Neil has a very creative/vivid dream life (thank you morphine and lorazapan). He lately he has been having a series of on going dreams and hallucinations about heaven.
The other night he dreamt he visited heaven on a one day pass. There are 3 parts to this dream. Part I, Yiddish Land; Part 2, Me, Me Me; Part 3, The Reality Show.
When Neil arrived in heaven there was no one to greet him and no fanfare; he wandered around until he noticed that there were signs for different ethnic areas. He naturally headed for Yiddish Land, which was huge. As in the other ethnic areas, there was plenty of hot fresh food arranged on a table the size of a football field. He spotted giant bowls of chicken fat along side platters of fresh breads challah, pumpernickle and rye. Next to that was the gribenas (fried chicken fat). Of course there were other healthy delicacies such as kishkas, pickled tongue, chopped liver etc. He noticed with interest that there was no buying, selling or money involved . After helping himself to a few snacks, he saw a building in the distance that looked interesting and was marked with the letters MMM. The only people comingin and out seemed to be much better dressed than the rest of the crowd. He hopped on a segway, although there were many modes of transport.. golf carts, old trolley cars, all availabe at no cost. He arrived at the MMM building having no idea what to expect, but his curiosity was aroused. It turned out to be some sort of a formal social/country club facility, with well dresseed people sitting around smoking cigars and drinking fancy beverages; he took a seat in the corner, observed and listened.
His excitement was quickly dimished after thinking that heaven might not be so bad. Although money was not used in heaven and purchases could not be made, the MMM club was the place to go to brag about former possessions. Many former materalists and braggarts were represented. Here are some of the conversations Neil heard as he wandered around the huge building:
"Me, I had a house with 6 bedrooms and 6 baths and two Cadillacs all at the same time.Me, I had all my suits custom made in Hong Kong as I traveled the world. Me I had three homes, a summer home, a winter palace and a ski chalet." Others were vying with each other to determind whose kids went to the most expensive colleges.
Disappointed, he left the building hearing more " me, me, me's" talking about their possessions. He decided this place was not for him and left. He hopped on an available golf cart. He saw another building where he thougth he discerned laughter. He hopped off the golf card and knocked on the door, overwhelmmed by the odor of cigar smoke that came wafting through the building. This building had a sign on the door that said "The Reality Show".
Neil knocked on the door and an eldery, bearded rabbi opened it; Neil asked what was going on..and the rabbi replied, "Come on in boychick and see for yourself,but you look too young; most of our members are over 80 and all former clergy of one religion or another. This is a place where former rabbi's and religious scholars meet. We are tired of discussing the holy books so we use this place for entertainment."
Along the wall s I noticed large, flat screen TV's and people with 3D glasses and binoculars. The learned men explained between laughter that they were peeking in at the lives of people around the world as they went about their daily affairs.. "Notice how many of them scurry about seeking meaning and trying to figure out what life is all about and worring about the meaning of life and death", he candidly told Neil with a rye twinkle in his eye. Neil responded that he thought his was a mean spirited thing to be doing. The holy men laughed.
"You do not understand", replied the holy man; "People are going around looking outside themselves for meaning that they can never find. They do not know that th only true meaing lies within themselves. True meaning may even be different for each person; it is not something someone else can find for you, although (they chuckeld) , we did make a good living trying to help them find it."
Hardly able to breathe because of the cigar smoke, Neil rushed to the door, hopped on his segway and headed for the exit. The more he thought about what he had heard from the learned men, the more he was determined not to go back for a second visit.
On the other hand between the food, Yiddish Land and the Reality Show maybe heaven would not be so bad after all.
Monday, December 5, 2011
Monday, November 28, 2011
GIVING THANKS
Neil’s spirit was very much with us at this, our first Thanksgiving without him. Marla Joel and I brainstormed on how best to honor Neil’s memory on this day. Most of the ideas revolved around charity/Hospcie/Giggle Fund. . It suddenly became clear to me how to best honor Neil. Yiddish was the language of Neil's heart.. A language I have long shunned as “old fashioned”. The language our parents spoke when they did not want us to understand them. Our four grandchildren will have their first Yiddish lesson. This is how we will honor Neil today.
I perused our bookshelves studying Neil’s extensive library, noting how much the books we collect tell about who we are and what we value. I choose a book called Essential Yiddish and proceeded to select the words that our grandchildren would learn this day, 10 words to start. I left the task of how to teach these words to Joel and Marla, both very creative teachers. Marla suggested each child make a book, with one word on each page to be illustrated by them. I liked that idea, and we will do that.
Joel embellished on the plan, by gathering the kids around us , asking one of them to bring him a glass of vassar (water) while telling them that we are all mispochcha (family). He wove a tale using the Yiddish words on the list. The kids were encouraged to guess the meaning. This was followed by review games, the final review game was for the kids to create and perform a skit using each of the words. They met the challenge and entertained us with their “creativity.” I will continue to send new lists of words and Yiddish expressions via email. It will be Joel and Marla’s task to teach them to their children. L” dor v dor.
Hopefully in our own small way the Rudin/Gluck family will keep a bit of Yiddishkeit alive. Neil would be
so pleased.
As I sat at the Thanksgiving table in Marla and Mike’s lovely home, I took in the faces gathered at the table. Lynn, Mike’s mother, my much loved friend, sat to my right and Michael on my left and all around me other beautiful shinning faces. Jordan, almost six, asked each of us to participate in her school projeclt. We were to write our answer to this sentence: I am thankful for………..
We willingly complied. After completing the task we each read the responses that ranged from:
I am thankful for my good looks to I am thankful for my family. But it was Jordan’s response that won my heart. “I AM THIANKFUL FOR THE WORLD AND EVERYTHING THAT’S IN IT.” It does not get more inclusive than that. Me too, Jordan, me too.
Thank you Neil for the gift of the family we have created together. We each mourn you in our own idiosyncratic way and at our own pace, but as Zack so well stated, we each have a piece of your heart in ours. And there it will stay. You live in us and in the faces of our grandchildren. You are so alive in us, my sweet boy.
Cheryl
Novemeber, 2011
I perused our bookshelves studying Neil’s extensive library, noting how much the books we collect tell about who we are and what we value. I choose a book called Essential Yiddish and proceeded to select the words that our grandchildren would learn this day, 10 words to start. I left the task of how to teach these words to Joel and Marla, both very creative teachers. Marla suggested each child make a book, with one word on each page to be illustrated by them. I liked that idea, and we will do that.
Joel embellished on the plan, by gathering the kids around us , asking one of them to bring him a glass of vassar (water) while telling them that we are all mispochcha (family). He wove a tale using the Yiddish words on the list. The kids were encouraged to guess the meaning. This was followed by review games, the final review game was for the kids to create and perform a skit using each of the words. They met the challenge and entertained us with their “creativity.” I will continue to send new lists of words and Yiddish expressions via email. It will be Joel and Marla’s task to teach them to their children. L” dor v dor.
Hopefully in our own small way the Rudin/Gluck family will keep a bit of Yiddishkeit alive. Neil would be
so pleased.
As I sat at the Thanksgiving table in Marla and Mike’s lovely home, I took in the faces gathered at the table. Lynn, Mike’s mother, my much loved friend, sat to my right and Michael on my left and all around me other beautiful shinning faces. Jordan, almost six, asked each of us to participate in her school projeclt. We were to write our answer to this sentence: I am thankful for………..
We willingly complied. After completing the task we each read the responses that ranged from:
I am thankful for my good looks to I am thankful for my family. But it was Jordan’s response that won my heart. “I AM THIANKFUL FOR THE WORLD AND EVERYTHING THAT’S IN IT.” It does not get more inclusive than that. Me too, Jordan, me too.
Thank you Neil for the gift of the family we have created together. We each mourn you in our own idiosyncratic way and at our own pace, but as Zack so well stated, we each have a piece of your heart in ours. And there it will stay. You live in us and in the faces of our grandchildren. You are so alive in us, my sweet boy.
Cheryl
Novemeber, 2011
Monday, November 14, 2011
THE GIFT, November, 2011
Last night I had the pleasure of having Zachary Samuel Gluck, our 7 year old, firstt born grandchild, spend the night. From an early age it was clear to us that Zack was precocious. At the age of four, he began to ask me math questions that sent me scurrying for answers.
It was also at that age that he started to talk to me about God. “How do you know about God?“ I asked.
“Oh It is something I have always known”, he quietly replied. Zack is an old soul.
Before bedtime, we played some games. After clobbering me in Connect Four, I realized I was out of my league. He is able to think several moves ahead and approaches the game with a well thought out strategy.
I, on the other hand, fly by the seat of my pants. I decided to teach him how to play gin rummy,
feeling on much safer ground ,as I have played gin for many years and have some card sense. Perhaps it was
beginner’s luck, but after loosing three games of gin rummy, I suggest that we read together, thinking reading would be much gentler on my bruised ego. However, not having been in my condo for a year, I did not have many age appropriate books. I did find our wedding album on the shelf, June 23, 1966, clearly written the album's cover
This would it be a good opportunity to introduce him to his great grandparents and his great, great grandparents. He carefully examined all of the photos and asked who the two teenagers were. "That’s your Aunt Brenda and Uncle Frank", I told him. Brenda and Frank are my younger brother and sister, who were 15 and 16 at our wedding.. “Wow”! he exclaimed., “ I never would have never recognized them.”
After going through all of the pictures, I closed the album, and it was then that he asked me a question I was not prepared to answer. "Do you know where Pop (Neil) went when he died”? , he asked me.
I hesitated, and then fortunately had the wisdom to ask him what he thought.
“ Well, he said, I have been thinking about this all week, and the answer became obvious to me.
When Pop died, his heart broke into a million pieces and everyone he knew got a piece of his heart.”
Now it was my turn to say “ Wow! “
We do all have a piece of Neil inside of us. When friends came to visit, he would often take their hand
and hold it over his heart and say, “ I am imprinting you on my heart, so that I will have you with me wherever I am going, but maybe what he was really doing was making a list of who would receive a piece of his heart.
As long as we live, he will too.
Zachary, thank you for the gift you gave to both Pop and me this morning.
Your words made me cry happy tears. Thank you for sharing your wisdom with me.
Bubbie /Cheryl
Sunday, November 13, 2011
Afterwards
I have a new title. One I did not ask for but none the less, was thrust upon me. Widow..... The taste is bitter as it rolls off my tongue.
Neil spent the last 4 months of his life in bed, but being who he was, he made the best of it. Our days were filled with joyous company. People came from in and out of town. His good friend, Natalie, came and read to him in Yiddish. Evenings were spent with me reading from his favorite writers. Once his father, who died many years ago, stopped by to listen in. Neil saw him clearly and was thrilled by his visit.
Thank you to all of you who came and filled our days with fun and laughter. It brought the outside world in and it was a gift we can never repay.
We never expected Neil would loose his mind; he was his mind, but on Sunday Oct 16 the unthinkable happened. He took leave of his senses and for me that was the day he died. He was no longer the Neil I knew. My best guess would be vascular dementia. He was in bed for so long and had no circulation, but the cause does not matter, living with the result was the issue. I would have not survived without Hospice.They moved him into a Hospice House, where he stayed for 2 weeks. I slept there every night except for the night he died, 11/1/11. I think that day was chosen for him because he was truly one of kind.I do not want him to “rest” in peace. I want him to soar and play and be embraced by the parents and grandparents he so cherished.
Shiva was filled with love, laughter and good memories and wonderful stories. Michael Strausz, our nephew spoke lovingly about his Uncle Nei and talked about how he l influenced his career choice. Michael is a professor because of Neil, and he wears Neil’s regalia with pride. Neil knew this and it gave him great pleasure. He and Neil had long talks together about academia.
On Monday Nov 7, Jordan, our soon to be 6 yr old grand daughter got up early and hopped into bed with me for a snuggle and some girl talk. We talked about her love for horses. I remembered how much Neil used to love taking our children on mystery trips so I told Jordan that we would be going on a mystery trip t later that afternoon. This would be an early birthday gift for her sixth birthday.We arrived at the horse back riding farm with my sister, Joel and Deb, Marla and Mike and all 4 grand children. It was an incredibly beautiful day, the air filled with the smells and sights of fall. As we got out of the car, we were greeted by Al the owner of the farm.Al, because of advanced MS, was in a power wheelchair, a chair that enabled him to traverse the farm. He told me his wife was a saint. She takes such good care of him. He was full of jokes, his smile punctuated by laughter. He laughed the hardest at his own jokes.“Life is short,” he told us, “we need to laugh more.”We nodded our heads in silent agreement.“You must love horses very much”, someone responded.Much to our surprise Al said “No, I wouldn’t care if I never saw another horse again in my life, but my wife loves horses and I love my wife.”
Ahhhhh, I thought, Al had discovered the secret to a happy marriage: Love your partner more than yourself.
I was familiar with that logic because I had experienced that kind of love.Lucky me. Lucky Al.
Cheryl
Saturday, October 29, 2011
The Journey, Oct 28, 2011
Our journey with ALS has been long and hard. ALS has lived up to its reputation.
I have, by choicem been immersed in silence for several days.
I sat, watched the lake and breathed in and out. It was my first time alone in the house in a long time. I have had a health care worker here everyday for the last 5 months. My space has not been my own.
Yesterday I woke up and realized it was Friday and I felt a need for community.. I yearned for shabbas dinner with friends. I needed to hear the words of the prayers to wash over and soothe me. I also craved a big bowl of Kathy Gordon's delicious lentil soup. She makes a vat each fall and brings me enough for several meals. I make it too, but it is never as good as hers. Unfortunately she lives in Buffalo, so I could only taste it in my imagination.
At 9 am Friday morning, I phoned my angel team and invited them to dine with me at Hospice House. Fortunately 10 people were available to honored my request. Veg Catering Service did the rest.
We gathered first in Neil's room to light candles. As we encircled him and blessed him, I could see
the love/sadness reflected in everyone's face. It mirrored the feelings of my heart.
After the candles were lit, we adjourned to a private dinning room, said kiddish over the wine, blessed the challah (which Lori and Steve Steinlauf made, their first attempt ever, a work of art and delicious)! As we sung the blessing over the challah, we held the hand of the person on either side of us so that our circle of blessing and love physically connected us. An electric current of love went through me as we created this circle of holiness.
We had a sumptuous feast. Baba ginoush, humous, toubelh, spanakipta... etc. Neil's favorite foods; he would have loved this gathering, this gathering to honor him and bless him on his journey home.
Thank you Angel Team, although I realize not all of you could come at the last minute, in so many other ways you have enriched our lives and made our journey so much more bearable. You allowed Neil an audience and let him entertain you. You listened to his stories, his jokes. He so looked forward to your visits and the milkshake brigade delighted and nourished him.. The gift of your presence made our house a holy place.
A few days before it was decided that it would be in Neil's best interest to be in a state of sleep, he said to me quietly one morning, " I see your mother floating above you.." She came to comfort you, he said..
Thank you Mom, you knew I needed you and you came. Sorry I could not could not see you, I would have liked that. I miss you. Please take care of Neil for me until I get there.
Cheryl
I have, by choicem been immersed in silence for several days.
I sat, watched the lake and breathed in and out. It was my first time alone in the house in a long time. I have had a health care worker here everyday for the last 5 months. My space has not been my own.
Yesterday I woke up and realized it was Friday and I felt a need for community.. I yearned for shabbas dinner with friends. I needed to hear the words of the prayers to wash over and soothe me. I also craved a big bowl of Kathy Gordon's delicious lentil soup. She makes a vat each fall and brings me enough for several meals. I make it too, but it is never as good as hers. Unfortunately she lives in Buffalo, so I could only taste it in my imagination.
At 9 am Friday morning, I phoned my angel team and invited them to dine with me at Hospice House. Fortunately 10 people were available to honored my request. Veg Catering Service did the rest.
We gathered first in Neil's room to light candles. As we encircled him and blessed him, I could see
the love/sadness reflected in everyone's face. It mirrored the feelings of my heart.
After the candles were lit, we adjourned to a private dinning room, said kiddish over the wine, blessed the challah (which Lori and Steve Steinlauf made, their first attempt ever, a work of art and delicious)! As we sung the blessing over the challah, we held the hand of the person on either side of us so that our circle of blessing and love physically connected us. An electric current of love went through me as we created this circle of holiness.
We had a sumptuous feast. Baba ginoush, humous, toubelh, spanakipta... etc. Neil's favorite foods; he would have loved this gathering, this gathering to honor him and bless him on his journey home.
Thank you Angel Team, although I realize not all of you could come at the last minute, in so many other ways you have enriched our lives and made our journey so much more bearable. You allowed Neil an audience and let him entertain you. You listened to his stories, his jokes. He so looked forward to your visits and the milkshake brigade delighted and nourished him.. The gift of your presence made our house a holy place.
A few days before it was decided that it would be in Neil's best interest to be in a state of sleep, he said to me quietly one morning, " I see your mother floating above you.." She came to comfort you, he said..
Thank you Mom, you knew I needed you and you came. Sorry I could not could not see you, I would have liked that. I miss you. Please take care of Neil for me until I get there.
Cheryl
Wednesday, October 26, 2011
Oct 26,2011
Leaving the dark, quiet tranquility of the hospice house this morning, I venture outside into the blazing sunshine. Birds are singing the sky is the bluest of blue; hard to imagine there is anything wrong in the world on the day like this.
After an 8 am meeting today with the Hospice Ethics Committee, a kind and compassionate group of doctors, nurses, chaplains, social workers and ,of course, Morgan, our dearly loved hospice case manager, I walked back to Neil's room. He was sleeping peacefully. I loaded the CD player with his favorite operas, kissed him and came home to wait for hospice to pick up his hospital bed, oxygen tank etc.
I met with the ethics committee because of my request for palliative sedation for Neil. This is something hospice takes very seriously, but Joel and Marla and I feel, this is in his best interest. It is what I would want for myself, if this were me.. He mentioned several months ago that he would want sedation should he become mentally incapciated. . He has fewer and fewer moments of lucidity now. A man of intelligence, wit and humor, he would not want to live this way. The ethics committee is must understandable tread carefully and they are uncomfortable with unsing palliative sedation. It is akin to euthanasia because it renders one unconscious and issues of legality arise. I am comfortable with the next best thing they can offer... a morphine drip that can be increased as needed and possibly phenobarbital if there is further distress or discomfort.
What I am seeking is an end to his mental/psychic anguish and physical pain. Food and drink will no longer be required, and he will sleep most of the time. I will continue to sleep on the sofa bed in his room to monitor him and be there should he wake up.
Neil was relieved when he thought he would die of a heart attack. He dreaded suffering the ravages of ALS. The thought of not being able to communicate would be the ultimate blow to him, a communicator, a talker, a laugher, a story teller.
I am soul weary. We have been sitting shiva together for nearly 4 months.. I think he rather enjoyed much of it. His 68th birthday was just 5 wks ago. He wanted a celebration, but without a cake or candles....just 8 friends who would come and make him laugh. And that they did with fun and flair.. As we ate pie and ice cream we laughed at the costumes and the jokes. . As one guest said, "The love in the room was palpable." The pictures are on facebook, just type in Rudin Family Giggle Fund to view them.
We have had an amazing summer in Sarasota. It was a gift, a time filled with incredible sweetness and tenderness. Visitors from in and out of town, our very own milkshake and mandel bread brigade. When Neil mentioned a food he was craving.. ie beef stew, steak,chicken soup with matzah balls, before we knew it, it appeared at our door.
Neil said he was lucky because he experienced love. He gave and received it generously. He often said that the 12 years after his heart attack (which he called his first death) were the most gratifying years of his life. During that time he saw Joel and Marla marry, he witnessed the birth of 4 beautiful grandchildren, and he engaged in meaningful volunteer work. Also during that time, we moved to sarasota and met an interesting array of people. Neil formed a men's laughing/discussion group that met every Friday, he published a book and started a charitable fund for the children of hospice
It has been a good life, a sweet life ,although too short. what he lost in quatity, he made up for in quality.
As I write I think of the thousands of others who suffer with illness. Many who do it with less love/support
than we have had. My heart goes out to them.
As we traveled this ALS journey, we have met amazing people and deepened friendships. We have been the reecipents of loving kindness from doctors, nurses, health care workers. There are people who I know are uncomfortable being around sickness, but who still came because they love Neil and were able to put their own discomfort aside to comfort him. We had so many more offers to visit than we could possibly accept,but are grateful for them nonetheless. I will forever be grateful to hospice for taking such good care of us.
I enter our our condo, a home now devoid of his precense, yet filled wtih it. I see him everywhere and it fills and comforts me.
What an impact he has had on me. He has been my moral compass. My guide into the world of Yiddish/Yiddishkeit, menschood. These gifts I will take with me where ever I go.
cheryl
After an 8 am meeting today with the Hospice Ethics Committee, a kind and compassionate group of doctors, nurses, chaplains, social workers and ,of course, Morgan, our dearly loved hospice case manager, I walked back to Neil's room. He was sleeping peacefully. I loaded the CD player with his favorite operas, kissed him and came home to wait for hospice to pick up his hospital bed, oxygen tank etc.
I met with the ethics committee because of my request for palliative sedation for Neil. This is something hospice takes very seriously, but Joel and Marla and I feel, this is in his best interest. It is what I would want for myself, if this were me.. He mentioned several months ago that he would want sedation should he become mentally incapciated. . He has fewer and fewer moments of lucidity now. A man of intelligence, wit and humor, he would not want to live this way. The ethics committee is must understandable tread carefully and they are uncomfortable with unsing palliative sedation. It is akin to euthanasia because it renders one unconscious and issues of legality arise. I am comfortable with the next best thing they can offer... a morphine drip that can be increased as needed and possibly phenobarbital if there is further distress or discomfort.
What I am seeking is an end to his mental/psychic anguish and physical pain. Food and drink will no longer be required, and he will sleep most of the time. I will continue to sleep on the sofa bed in his room to monitor him and be there should he wake up.
Neil was relieved when he thought he would die of a heart attack. He dreaded suffering the ravages of ALS. The thought of not being able to communicate would be the ultimate blow to him, a communicator, a talker, a laugher, a story teller.
I am soul weary. We have been sitting shiva together for nearly 4 months.. I think he rather enjoyed much of it. His 68th birthday was just 5 wks ago. He wanted a celebration, but without a cake or candles....just 8 friends who would come and make him laugh. And that they did with fun and flair.. As we ate pie and ice cream we laughed at the costumes and the jokes. . As one guest said, "The love in the room was palpable." The pictures are on facebook, just type in Rudin Family Giggle Fund to view them.
We have had an amazing summer in Sarasota. It was a gift, a time filled with incredible sweetness and tenderness. Visitors from in and out of town, our very own milkshake and mandel bread brigade. When Neil mentioned a food he was craving.. ie beef stew, steak,chicken soup with matzah balls, before we knew it, it appeared at our door.
Neil said he was lucky because he experienced love. He gave and received it generously. He often said that the 12 years after his heart attack (which he called his first death) were the most gratifying years of his life. During that time he saw Joel and Marla marry, he witnessed the birth of 4 beautiful grandchildren, and he engaged in meaningful volunteer work. Also during that time, we moved to sarasota and met an interesting array of people. Neil formed a men's laughing/discussion group that met every Friday, he published a book and started a charitable fund for the children of hospice
It has been a good life, a sweet life ,although too short. what he lost in quatity, he made up for in quality.
As I write I think of the thousands of others who suffer with illness. Many who do it with less love/support
than we have had. My heart goes out to them.
As we traveled this ALS journey, we have met amazing people and deepened friendships. We have been the reecipents of loving kindness from doctors, nurses, health care workers. There are people who I know are uncomfortable being around sickness, but who still came because they love Neil and were able to put their own discomfort aside to comfort him. We had so many more offers to visit than we could possibly accept,but are grateful for them nonetheless. I will forever be grateful to hospice for taking such good care of us.
I enter our our condo, a home now devoid of his precense, yet filled wtih it. I see him everywhere and it fills and comforts me.
What an impact he has had on me. He has been my moral compass. My guide into the world of Yiddish/Yiddishkeit, menschood. These gifts I will take with me where ever I go.
cheryl
Sunday, October 23, 2011
Transitions/Transformations Oct 22
We are now staying in a hospice house for the third time; we returned home from the other two, I am not certain that will be the case this time. The Jewish holiday, Sukkot was recently celebrated, a holiday that reminds us of the temporal nature of our homes/ lives. We all live in a sukka . We are short time visitors on this earth plain.
We are surrounded by a tight circle of love from all of our angels. We feel it and breathe and relax in its support. I read and reread and savor the emails, the sweet tributes. I continue to read them to Neil, hopefully he hears them. I do not need to sleep here any longer, but I like to keep watch over him. If he wakes up, he will be disorientated and scared. I am his familiar. He told me last week, he will miss my voice, my reading to him. I will loose him, bu he will loose everyone, everything, this lover of life.
Neil has experienced a noticeable downhill slide in our five days here, now sleeping 24/7. His breathing is strong and steady; he does not seem to be in pain. I told him the Giggle Fund is growing, I saw a tear form and roll down his cheek. He holds the title of being the second of Hospices longest surviving patients. Two days ago, he told me he could see his mother standing nearby.
On our second night here, he was still able to express himself. The night nurse, Faith, introduced herself. Neil took one look and was infatuated.
"You are so beautiful", he told her.
"I think I like you," she responded. "No one has told me I am beautiful for a very long time."
He asked her if he could hold her hand and she willingly complied. (It is a good thing I am not the jealous type). Faith is about 30, soft spoken and truly lovely. It was 9:30 pm, I had just put on my night clothes, with my cuddly, warm fleece jacket over my shoulders, my second skin, as I am always cold. I smiled and watched this tender scene, between Neil and his night nurse, Suddenly Neil turned, looked at me and said, "What are you wearing, you can't dress like that here. This is a very nice place. You should get yourself some new clothes." The next day I went shopping for a new nightgown,which I am now wearing under my cozy fleece jacket. I had the feeling that it was not only Neil who had a visit from his mother. She spoke through him, always a fashion plate. For me, though, comfort,warmth and coziness trump style. Besides they keep it so cold in here.
Each day brings dramatic new changes. He is no longer aware of Faith. He is not watching TV or
asking for news. He is withdrawing from the world. On Friday I bought him a corned beef sandwich, he really wanted to go out to lunch, forgetting he could not get out of bed. He ate it along with a bowl of sweet and sour cabbage soup. On Saturday he did not eat or drink; he spent the day sleeping, but was up most of the night. He is aware when people are around, but frustrated by not being able to talk/entertain/interact. His words are often garbled and slurred. Not being able to express himself so frustrating for him, a linguist and a people person.
Outside Neil's hospice room is a dazzling butterfly garden......Monarchs, zebra stripped butterflies, caterpillars, creatures in a dizzying array of colors and life stages, all busy transforming into the next stage of life before our very eyes. The metaphor is poignant and not wasted on us.
Life demands transition/transformation/change. It is all part of nature's creative process. I do not like this part of the process. It is hard to for me to think of loss as creative. Creativity holds such positive connotations for me.
A part of me will be relieved to see Neil released from the prison his body has become. I want him to walk, to run, to swim, to fly.. But thinking about missing him, living without him is not a transition I look forward to experiencing. Making this transformation will be my ultimate creative act.
Cheryl
We are surrounded by a tight circle of love from all of our angels. We feel it and breathe and relax in its support. I read and reread and savor the emails, the sweet tributes. I continue to read them to Neil, hopefully he hears them. I do not need to sleep here any longer, but I like to keep watch over him. If he wakes up, he will be disorientated and scared. I am his familiar. He told me last week, he will miss my voice, my reading to him. I will loose him, bu he will loose everyone, everything, this lover of life.
Neil has experienced a noticeable downhill slide in our five days here, now sleeping 24/7. His breathing is strong and steady; he does not seem to be in pain. I told him the Giggle Fund is growing, I saw a tear form and roll down his cheek. He holds the title of being the second of Hospices longest surviving patients. Two days ago, he told me he could see his mother standing nearby.
On our second night here, he was still able to express himself. The night nurse, Faith, introduced herself. Neil took one look and was infatuated.
"You are so beautiful", he told her.
"I think I like you," she responded. "No one has told me I am beautiful for a very long time."
He asked her if he could hold her hand and she willingly complied. (It is a good thing I am not the jealous type). Faith is about 30, soft spoken and truly lovely. It was 9:30 pm, I had just put on my night clothes, with my cuddly, warm fleece jacket over my shoulders, my second skin, as I am always cold. I smiled and watched this tender scene, between Neil and his night nurse, Suddenly Neil turned, looked at me and said, "What are you wearing, you can't dress like that here. This is a very nice place. You should get yourself some new clothes." The next day I went shopping for a new nightgown,which I am now wearing under my cozy fleece jacket. I had the feeling that it was not only Neil who had a visit from his mother. She spoke through him, always a fashion plate. For me, though, comfort,warmth and coziness trump style. Besides they keep it so cold in here.
Each day brings dramatic new changes. He is no longer aware of Faith. He is not watching TV or
asking for news. He is withdrawing from the world. On Friday I bought him a corned beef sandwich, he really wanted to go out to lunch, forgetting he could not get out of bed. He ate it along with a bowl of sweet and sour cabbage soup. On Saturday he did not eat or drink; he spent the day sleeping, but was up most of the night. He is aware when people are around, but frustrated by not being able to talk/entertain/interact. His words are often garbled and slurred. Not being able to express himself so frustrating for him, a linguist and a people person.
Outside Neil's hospice room is a dazzling butterfly garden......Monarchs, zebra stripped butterflies, caterpillars, creatures in a dizzying array of colors and life stages, all busy transforming into the next stage of life before our very eyes. The metaphor is poignant and not wasted on us.
Life demands transition/transformation/change. It is all part of nature's creative process. I do not like this part of the process. It is hard to for me to think of loss as creative. Creativity holds such positive connotations for me.
A part of me will be relieved to see Neil released from the prison his body has become. I want him to walk, to run, to swim, to fly.. But thinking about missing him, living without him is not a transition I look forward to experiencing. Making this transformation will be my ultimate creative act.
Cheryl
Monday, October 10, 2011
Caregiving 101
There is a sculpture at the Albright Knox Gallery in Buffalo that I seek out each time I go there.
I have thought about it many times over this past year. It is a 6 foot tall wooden sculpture of a toddler; on the tip of her shoe stands her 5 inch mother. The obvious message is that the mother's needs are dwarfed next to the needs of the toddler. I can envision a similar sculpture of a patient and his/her caregiver.
Neil and I have just returned from staying for 4 days at a Hospice House. The purpose of our stay was to provide a respite for me, but I realized after the first day that was not going to happen.Neil's needs are too great and Hospice is not intended to provide one on one care. That only happens at home.I realized this when Neil called me at home and asked me to call the nurses station and tell them he needed help. He could not reach the call button. He needed me to be there with him, especially at night. Right now he can do so little for himself; he was enormously relieved to have me there. I slept on an airbed on the floor next to him.
The room was beautiful, the service immediate once you press the call button, but if you cannot see or reach it, you are out of luck. Also pushing it 15 times and hour does not make you the most popular patient.
While staying at the Hospice Hospice I had an opportunity to meet with the social worker, a lovely young woman who truly understands the art of listening. As I spoke,she listened intently and every once in a while uttered the same annoying three words. I brushed her words aside and continued talking about our struggle with ALS and Neil's courage and compassion for others. She listened and repeated her three word refrain:
"What about you:? I brushed her question aside as if it were an annoying fly that had landed on my arm.
She is young and does not get it, I thought as I continued talking. "Can't you see," I said, "It is not about me, it is about seeing him through this." "So you are putting your life on hold," she responded. Now she finally gets it, I thought. When I saw her later in the day, I thanked her for taking the time to speak with me. And she said , "I did not say much, but I enjoyed hearing your wisdom." It was then that I told her, "I was annoyed by your word, but they struck in my craw." Her eyebrows raised in surprise. "Which word upset you," she asked with concern.I told her that it took me a few hours after our talk for her "wisdom to penetrate my thick skull. But when they did sink in I had an epiphany . She had held up a mirror for me and
I realized the impact of what she had asked me.
I am a slow learner. I have been ignoring my needs, as most caregivers often do. The caregivers needs are dwarfed by the needs of the patient. I am the mother on the toe of the child. The next day, I went for a massage... a wonderful, relaxing, pampering massage, which kept me calm and soothed for the rest of the
day. After the massage, which was in a beautiful Victorian home, I walked out the door and was immediately drawn to the house across the street. What had actually caught my eye was not the house, but the art scape on the front lawn. It was an amazing sight. I stared, eyes wide, taking in the beauty. I resisted the urge to knock on the door and thank the owners for creating such a work of art. Instead I clapped softly to honor the gift the owner had given me and others who walk down this street. Such creativity and beauty to behold.
Marla was here with us this weekend. I watched her feed Neil, read to him , hold and stroke his hand.
Who is the parent and who is the child?. When did she become so wise? Things have come full circle in our lives. I have always been drawn to circles. I knew there was a reason.
Some thoughts for the day: Listen more, talk less. Pay attention to the refrains. Be open to the wisdom of others, even when you do not like the message. Look for unexpected beauty; it lurks in strange places. Do not forget to honor yourself. Find what gives you joy and surround yourself with it.
Cheryl
I have thought about it many times over this past year. It is a 6 foot tall wooden sculpture of a toddler; on the tip of her shoe stands her 5 inch mother. The obvious message is that the mother's needs are dwarfed next to the needs of the toddler. I can envision a similar sculpture of a patient and his/her caregiver.
Neil and I have just returned from staying for 4 days at a Hospice House. The purpose of our stay was to provide a respite for me, but I realized after the first day that was not going to happen.Neil's needs are too great and Hospice is not intended to provide one on one care. That only happens at home.I realized this when Neil called me at home and asked me to call the nurses station and tell them he needed help. He could not reach the call button. He needed me to be there with him, especially at night. Right now he can do so little for himself; he was enormously relieved to have me there. I slept on an airbed on the floor next to him.
The room was beautiful, the service immediate once you press the call button, but if you cannot see or reach it, you are out of luck. Also pushing it 15 times and hour does not make you the most popular patient.
While staying at the Hospice Hospice I had an opportunity to meet with the social worker, a lovely young woman who truly understands the art of listening. As I spoke,she listened intently and every once in a while uttered the same annoying three words. I brushed her words aside and continued talking about our struggle with ALS and Neil's courage and compassion for others. She listened and repeated her three word refrain:
"What about you:? I brushed her question aside as if it were an annoying fly that had landed on my arm.
She is young and does not get it, I thought as I continued talking. "Can't you see," I said, "It is not about me, it is about seeing him through this." "So you are putting your life on hold," she responded. Now she finally gets it, I thought. When I saw her later in the day, I thanked her for taking the time to speak with me. And she said , "I did not say much, but I enjoyed hearing your wisdom." It was then that I told her, "I was annoyed by your word, but they struck in my craw." Her eyebrows raised in surprise. "Which word upset you," she asked with concern.I told her that it took me a few hours after our talk for her "wisdom to penetrate my thick skull. But when they did sink in I had an epiphany . She had held up a mirror for me and
I realized the impact of what she had asked me.
I am a slow learner. I have been ignoring my needs, as most caregivers often do. The caregivers needs are dwarfed by the needs of the patient. I am the mother on the toe of the child. The next day, I went for a massage... a wonderful, relaxing, pampering massage, which kept me calm and soothed for the rest of the
day. After the massage, which was in a beautiful Victorian home, I walked out the door and was immediately drawn to the house across the street. What had actually caught my eye was not the house, but the art scape on the front lawn. It was an amazing sight. I stared, eyes wide, taking in the beauty. I resisted the urge to knock on the door and thank the owners for creating such a work of art. Instead I clapped softly to honor the gift the owner had given me and others who walk down this street. Such creativity and beauty to behold.
Marla was here with us this weekend. I watched her feed Neil, read to him , hold and stroke his hand.
Who is the parent and who is the child?. When did she become so wise? Things have come full circle in our lives. I have always been drawn to circles. I knew there was a reason.
Some thoughts for the day: Listen more, talk less. Pay attention to the refrains. Be open to the wisdom of others, even when you do not like the message. Look for unexpected beauty; it lurks in strange places. Do not forget to honor yourself. Find what gives you joy and surround yourself with it.
Cheryl
Sunday, October 2, 2011
October 2, 2011
I awaken each morning and wait until I see the rise and fall of his chest. When we say goodnight, it is with knowing we may not see each other again.. How does one say goodbye to a life partner? There is no way. We have been each other's lives for over 50 years. It has been a good ride, filled with so many good memories.
Neil is fully aware of how quickly he is slipping. He is sad , but at peace. He talks to me about Kafka, Gimple the Fool, Lady of the Lake and his deep love of Yiddish.
He is a lover of life, of news of any kind. He loves good food, good movies, good friends and good jokes, emails from friends. He is happy when I laugh or make him laugh. That does not happen as much as we would like these days, but we are not without laughter. Good friends brought over a beef stew and a delicious honey cake (as per Neil's request) Friday night, and then introduced us to a very funny" Curb Your Enthusiasm" episode that we had not seen.. We laughed until we cried. Laughter.. .such a sweet release. He said he wants to die laughing. I think he came close Friday night.
Neil is first and foremost a family man; I know no one who enjoys being with his children/grandchildren more than he does. Our children have honored him by coming many times this summer and calling/skyping often.. Some days he is too weak to talk, but loves to listen in.
Neil once asked me what I thought were the highlights of our life together. I listed trips, weddings, special events and then asked him the same question.. For me, he said, the best times were the simple ones... waking up next to you each morning, holding your hand, walking on the beach, looking at the faces of my family and friends around the table. That was before the grandchildren, who delight him more than he can say.
He is teaching me how to die with grace and dignity. ..Together we observe his loosing pieces of himself . This disease has shaped our lives and it will continue to shape mine. I will strike back at ALS and take my revenge by to working towards a cure. Neil's love and concern for sick children drove him to create the Rudin Family Giggle Fund . My anguish and hatred of ALS will lead me to supporting and fundraising for ALS/TDI, a research institute in Boston that works 24/7 for a cure.
.
A very dear friend told me she heard a rabbi say that a death should be a celebrated event, even more so than a birth, because at a birth we do not know how a child will turn out or if the child will lead a good and moral life., But at death we know how a person lived, and if it was a good and decent life, it should be celebrated and honored. ..Morality, fairness and decency, humor, devotion to family, concern for those less fortunate have been consistent values in Neil's life. There is so much more he would like to accomplish, but that task must be left for us to continue.
cheryl
Saturday, September 17, 2011
Days of Awe
The Days of Awe are upon us. I shiver in expectation of what they will bring. In spite of my fear I am grateful and, I am in awe of Neil's creativity and concern for me and others as he travels this path. I know he does not want to leave me. A few days ago he said "I am so hungry for life, for the beach, for feeling the wind and the sun on my face". I will never go to the beach again without hearing his words or feeling his presence.
Thursday he had a wonderful day. A massage and a visit from his dear friend John Lindell,with whom
he shares a love of Kakfa, and with whom he always has good conversations. At bedtime he said "I had a such a nice day."
Friday hospice had to come because he had a blockage. As Morgan, our most loved hospice nurse, began the process of unblocking his obstruction, he asked for an opera. I put Opera's Greatest Hits on the CD player", which I will now always think of as music to have an enema by. I don't know many people who giggle during this procedure, but laughter mixed with a few yelps is what I heard as I closed the door.
September 18 is Neil's 68th birthday. He made it very clear that since this will be his last birthday,
he does not want a birthday party. No cake, no candles, but he would not mind if people came over to make him laugh. Because our bedroom space is limited, we invited the essential core of our Sarasota support team with the challenge that they must do or bring something that will make him laugh.... a joke a poem, a costume. They all willingly accepted the challenge. I hope Neil will be up to to receiving it.
Since yesterday when they administered large doses of morphine to get this through the "unblocking" experience, he has not fully gained his momentum. He is sleeping most of the time and having conversations with people who are not here, but they are here for him and he is enjoying them. During the night he had a lovely chat with his brother in law, Ricchard Strausz, whom he adores. He also had a chat with Daisy the 5 foot 80 lb dog Marla and Mike gave away 6 years ago (Ben was allergic). He invited her to jump up into bed with him so he could pet her.
His heart beat is slow, low and irregular, he is in and out of consciousness but becomes alert every now and then to ask me if I remembered to buy pretty flowers for the table and to tell me to make sure to buy enough lox.
So we are planning a party with jokes as I watch Neil sleep and fade away. So typical of the way he has lived. his life.................. Live life up until the last minute. Grab as many laughs as you can.. Enjoy the company of good friends.. Set a beautiful table. Make sure to have more food than you need when you have company No one should leave hungry. Make sure to always have flowers on the table and to make attractively designed food platters.
As we enter the days of awe, Neil remains in awe of the wonder of his life, in awe of the wondrous gift of our children and grandchildren. He is in awe of the love he has received from family, relatives and friends from far and near. Bless all of you and thank you for your gift of friendship. We feel your love and it is a source of comfort and support to us. I dutifully read Neil all of your emails and he so enjoys them.
May the Days of Awe be filled with gratitude for your life's blessings and as you have blessed us with your kindness, may you be blessed.
Cheryl
Thursday he had a wonderful day. A massage and a visit from his dear friend John Lindell,with whom
he shares a love of Kakfa, and with whom he always has good conversations. At bedtime he said "I had a such a nice day."
Friday hospice had to come because he had a blockage. As Morgan, our most loved hospice nurse, began the process of unblocking his obstruction, he asked for an opera. I put Opera's Greatest Hits on the CD player", which I will now always think of as music to have an enema by. I don't know many people who giggle during this procedure, but laughter mixed with a few yelps is what I heard as I closed the door.
September 18 is Neil's 68th birthday. He made it very clear that since this will be his last birthday,
he does not want a birthday party. No cake, no candles, but he would not mind if people came over to make him laugh. Because our bedroom space is limited, we invited the essential core of our Sarasota support team with the challenge that they must do or bring something that will make him laugh.... a joke a poem, a costume. They all willingly accepted the challenge. I hope Neil will be up to to receiving it.
Since yesterday when they administered large doses of morphine to get this through the "unblocking" experience, he has not fully gained his momentum. He is sleeping most of the time and having conversations with people who are not here, but they are here for him and he is enjoying them. During the night he had a lovely chat with his brother in law, Ricchard Strausz, whom he adores. He also had a chat with Daisy the 5 foot 80 lb dog Marla and Mike gave away 6 years ago (Ben was allergic). He invited her to jump up into bed with him so he could pet her.
His heart beat is slow, low and irregular, he is in and out of consciousness but becomes alert every now and then to ask me if I remembered to buy pretty flowers for the table and to tell me to make sure to buy enough lox.
So we are planning a party with jokes as I watch Neil sleep and fade away. So typical of the way he has lived. his life.................. Live life up until the last minute. Grab as many laughs as you can.. Enjoy the company of good friends.. Set a beautiful table. Make sure to have more food than you need when you have company No one should leave hungry. Make sure to always have flowers on the table and to make attractively designed food platters.
As we enter the days of awe, Neil remains in awe of the wonder of his life, in awe of the wondrous gift of our children and grandchildren. He is in awe of the love he has received from family, relatives and friends from far and near. Bless all of you and thank you for your gift of friendship. We feel your love and it is a source of comfort and support to us. I dutifully read Neil all of your emails and he so enjoys them.
May the Days of Awe be filled with gratitude for your life's blessings and as you have blessed us with your kindness, may you be blessed.
Cheryl
Friday, September 2, 2011
September 2
We are living in a strange kind of limbo.... a place between life and death. In the past week we both noticed a significant slowing down... no appettite, more breathing problems, more time spent sleeping, less energy.
The only thing that remains the same is Neil's amazing spirit. He tells me that he feels lucky. Lucky to have lived the life he has lived. Lucky to have had the friends he has had. Lucky to have had the parents/grandparents and children and grandchildren he has. He looks at the world with his glass
half full, rathe than half empty. I am not sure how many people who have been in bed for 2 months would say they were lucky.
He tells me that he is getting chest pains, and says it is because it is bursting with the love he has received. The love can no longer be contained. We both know and are grateful for this love.
Until you are sick, it is hard to imagine the gift of a visit or a smile from a friend. We have been blessed by that, for sure. Thank you everyone.
At Neil's insistence we sold our wheelchair van today and bought a new car. He wanted to do this for me, so that he could "oversee" it . It was his wish that i have one less thing to deal with "afterwards".
Joel neogitiated the deal when he was here, and the car was delivered today. A bittersweet purchase. The van served us well and allowed Neil the freedom to get out. Another chapter of our life that is no more.
One of the many things that amazes me about Neil is that while sick, he continues to worry about me and about others. I did not realize when I married him that I was marrying someone who loves me more than he loves himself. I see that cleary now. So I am the lucky one.
For several months now, Neil has been lamenting the fact that so many children are stricken with disease. Neil thought about what he could do to bring sick children some laughter and cheer. He wanted to find a way to brighten their days and comfort them as he has been comforted.
If you know Neil, then you also know the role humor has played in his life.. He generates and enjoys a good joke or a funny story. Laughter he tells me is the most potent medicine he takes. To that end he came up with the idea of bringing laughter and fun to hopsice children who face a variety of life threatening illnesses.
This week The Rudin Family Giggle Fund became a reality in conjunction with hospice. The intention of the fund, which will support children enrolled in the Essential Care Program of hospice will be to brighten the days of pediatric patients by covering the costs of celebratory events, entertainment and such activities that will bring joy to sick/economically needy children and their families. Hospice currently serves 25 families enrolled in this program, but there are 50 families on the waiting list to be helped. It is his hope that we will be able to help expand the fund to include them.
Should you wish to support this fund the address is:
Hospice Foundation of WNY (Rudin Family Giggle Fund)
225 Como Park Blvd, Cheektowaga, NY 14227.
Neil is excited about being here to see this happen. It is important to him to
leave a footprint of kindness on the universe.
Cheryl
The only thing that remains the same is Neil's amazing spirit. He tells me that he feels lucky. Lucky to have lived the life he has lived. Lucky to have had the friends he has had. Lucky to have had the parents/grandparents and children and grandchildren he has. He looks at the world with his glass
half full, rathe than half empty. I am not sure how many people who have been in bed for 2 months would say they were lucky.
He tells me that he is getting chest pains, and says it is because it is bursting with the love he has received. The love can no longer be contained. We both know and are grateful for this love.
Until you are sick, it is hard to imagine the gift of a visit or a smile from a friend. We have been blessed by that, for sure. Thank you everyone.
At Neil's insistence we sold our wheelchair van today and bought a new car. He wanted to do this for me, so that he could "oversee" it . It was his wish that i have one less thing to deal with "afterwards".
Joel neogitiated the deal when he was here, and the car was delivered today. A bittersweet purchase. The van served us well and allowed Neil the freedom to get out. Another chapter of our life that is no more.
One of the many things that amazes me about Neil is that while sick, he continues to worry about me and about others. I did not realize when I married him that I was marrying someone who loves me more than he loves himself. I see that cleary now. So I am the lucky one.
For several months now, Neil has been lamenting the fact that so many children are stricken with disease. Neil thought about what he could do to bring sick children some laughter and cheer. He wanted to find a way to brighten their days and comfort them as he has been comforted.
If you know Neil, then you also know the role humor has played in his life.. He generates and enjoys a good joke or a funny story. Laughter he tells me is the most potent medicine he takes. To that end he came up with the idea of bringing laughter and fun to hopsice children who face a variety of life threatening illnesses.
This week The Rudin Family Giggle Fund became a reality in conjunction with hospice. The intention of the fund, which will support children enrolled in the Essential Care Program of hospice will be to brighten the days of pediatric patients by covering the costs of celebratory events, entertainment and such activities that will bring joy to sick/economically needy children and their families. Hospice currently serves 25 families enrolled in this program, but there are 50 families on the waiting list to be helped. It is his hope that we will be able to help expand the fund to include them.
Should you wish to support this fund the address is:
Hospice Foundation of WNY (Rudin Family Giggle Fund)
225 Como Park Blvd, Cheektowaga, NY 14227.
Neil is excited about being here to see this happen. It is important to him to
leave a footprint of kindness on the universe.
Cheryl
Monday, August 15, 2011
August 15, 2011
Sad to report that there has been a noticeable decline in Neil’s condition.
More trouble breathing at night, trouble waking up in the am, sleeping more, some mental confusion. The ALS and the CHF are symptoms are kicking up. He struggles to be conversant and upbeat. He is a strong; a pragmatic realist, with a large and generous heart.
He asks me to laugh and smile more, saying it feeds him…… a tall order for me.
My mind travels back over the past year. June 28 , 2010 we moved into
our new condo in Buffalo. Our house was filled for 4 months with wonderful, delicious company. Visits from NJ kids, visits from Sarasota, Cleveland, Hawaii, Pittsburg and Vancouver, TX, NYC . … a reunion with 14 family members a year ago this month, when we met our new little grand neice. And of course, visits from all of our Buffalo friends whose love and support know no bounds. Our home was filled with 4 month’s worth of laughter, dinner parties, outings and fun, time spent with grandchildren before making the decision to leave for Sarasota October 26. Last summer seems like another lifetime.
The first 4 months, our time in Sarasota mirrored our 4 summer months in Buffalo.
Buffalo friends and family, kids/grandkids visited Sarasota. Our time filled with giving tours, going to the beach, the bay front, the noon time operas, lunch with friends, lovely Shabbat dinners at the Yudin/Charnes home, catered dinners here and an especially memorable catered Valentines dinner, filled with love, friendship and gales of laughter; some of the decorations are still around because we both smile at the memory of that evening.
We both have a vivid memory of being at K.H., our beloved shul, (how many people can say they belong to a shul with an African drummer and a guitarist at every Firday ntie service?) when a spontaneous dance occurred. Someone grabbed Neil’s wheelchair and placed him at the head of the dance line. When Neil returned to his seat afterwards telling me how much fun he had because he had not danced in years, he also reported that he felt like the Torah because everyone he “danced” by touched him or patted him or kissed him. Tears streamed down my face watching him.
The love and kindness we have received from all of you have remained with us as we as we travel this road.
As the downslide continues Neil refuses to let it define him. He defied it and times and suffered the consequences, but it did not stop him until it did.
Since July 11 he has not had the strength to get out of bed. I watch him become weaker each day. He has lost a great deal of weight. Food has little appeal. His voice is soft, weak and unsteady. Our evenings are still precious to us. We watch movies, read together and talk. Our health care worker is here all day; evenings are our only alone time.
Neil, ever the planner, has suggested a February reunion here with 2 dear girlfriends, one of whom who lives in Portland.We have rediscovered each other after not been in touch with for over 38 years. The February date is on her calendar. Neil suggested it, even though he may not be here to enjoy it.
Neil has also re connected with some of his old friends and family. He called them to say hello and goodbye; some have continued to stay in touch.
Neil loves genealogy and before his back surgery he was contacted by Boris, who shares his mother's family name and lives in London, Ontario. Neil's cousin, Sy lives in WA and has kindly submitted his DNA for testing as has Boris. In a few days we should know if we have discoverd a new branch of the family.
My mind travels to “after”….. a place I do not want to go, but must.
I do not want to sit shiva for more than one night. We are doing that now, together.
I will want to be with family; Neil will be with me in every cell and fiber of
my being. I will carry him with me in my heart where ever I go.
We will all face death one day, hopefully not for a long, long time.
I hope that when that time comes, it is with as much grace and dignity, strength and creativity as we can summon and with as much ease as the heavens will allow.
Neil and I agree that this is no way to live. His body is no longer serving him well. His spirit needs to be released so that it can soar and rejoin all of the ancestors he cherishes. May they welcome him with open arms and take care of him for me until I re join him.
Cheryl
More trouble breathing at night, trouble waking up in the am, sleeping more, some mental confusion. The ALS and the CHF are symptoms are kicking up. He struggles to be conversant and upbeat. He is a strong; a pragmatic realist, with a large and generous heart.
He asks me to laugh and smile more, saying it feeds him…… a tall order for me.
My mind travels back over the past year. June 28 , 2010 we moved into
our new condo in Buffalo. Our house was filled for 4 months with wonderful, delicious company. Visits from NJ kids, visits from Sarasota, Cleveland, Hawaii, Pittsburg and Vancouver, TX, NYC . … a reunion with 14 family members a year ago this month, when we met our new little grand neice. And of course, visits from all of our Buffalo friends whose love and support know no bounds. Our home was filled with 4 month’s worth of laughter, dinner parties, outings and fun, time spent with grandchildren before making the decision to leave for Sarasota October 26. Last summer seems like another lifetime.
The first 4 months, our time in Sarasota mirrored our 4 summer months in Buffalo.
Buffalo friends and family, kids/grandkids visited Sarasota. Our time filled with giving tours, going to the beach, the bay front, the noon time operas, lunch with friends, lovely Shabbat dinners at the Yudin/Charnes home, catered dinners here and an especially memorable catered Valentines dinner, filled with love, friendship and gales of laughter; some of the decorations are still around because we both smile at the memory of that evening.
We both have a vivid memory of being at K.H., our beloved shul, (how many people can say they belong to a shul with an African drummer and a guitarist at every Firday ntie service?) when a spontaneous dance occurred. Someone grabbed Neil’s wheelchair and placed him at the head of the dance line. When Neil returned to his seat afterwards telling me how much fun he had because he had not danced in years, he also reported that he felt like the Torah because everyone he “danced” by touched him or patted him or kissed him. Tears streamed down my face watching him.
The love and kindness we have received from all of you have remained with us as we as we travel this road.
As the downslide continues Neil refuses to let it define him. He defied it and times and suffered the consequences, but it did not stop him until it did.
Since July 11 he has not had the strength to get out of bed. I watch him become weaker each day. He has lost a great deal of weight. Food has little appeal. His voice is soft, weak and unsteady. Our evenings are still precious to us. We watch movies, read together and talk. Our health care worker is here all day; evenings are our only alone time.
Neil, ever the planner, has suggested a February reunion here with 2 dear girlfriends, one of whom who lives in Portland.We have rediscovered each other after not been in touch with for over 38 years. The February date is on her calendar. Neil suggested it, even though he may not be here to enjoy it.
Neil has also re connected with some of his old friends and family. He called them to say hello and goodbye; some have continued to stay in touch.
Neil loves genealogy and before his back surgery he was contacted by Boris, who shares his mother's family name and lives in London, Ontario. Neil's cousin, Sy lives in WA and has kindly submitted his DNA for testing as has Boris. In a few days we should know if we have discoverd a new branch of the family.
My mind travels to “after”….. a place I do not want to go, but must.
I do not want to sit shiva for more than one night. We are doing that now, together.
I will want to be with family; Neil will be with me in every cell and fiber of
my being. I will carry him with me in my heart where ever I go.
We will all face death one day, hopefully not for a long, long time.
I hope that when that time comes, it is with as much grace and dignity, strength and creativity as we can summon and with as much ease as the heavens will allow.
Neil and I agree that this is no way to live. His body is no longer serving him well. His spirit needs to be released so that it can soar and rejoin all of the ancestors he cherishes. May they welcome him with open arms and take care of him for me until I re join him.
Cheryl
Sunday, August 7, 2011
Lemonade
Neil has been having more frequent chest pains. The pains are brief, but occurring with greater regularity. He calls them love taps from heaven, and says that they inexplicably comfort him.
He continues to shed tears easily, especially when he says goodbye to our kids and grandkids or when he is saddened by a friend’s misfortunate or touched by an act of kindness.
On Sunday he opened a fortune cookie that said:
"Your family is your masterpiece "
He thought about it for a few days and decided that the purpose of the fortune was to tell him that his work is complete. His family can take care of themselves. He feels he has managed to help create a sweet and loving family of whom he is so proud. Our children and their spouses are people whom we really like. They are accomplished and are good and kind people.
Joel emailed to tell us that his former college room mate and dear friend, Neal B. would like to fly down to Sarasota from NYC for the day to visit us. Marla phoned yesterday to tell us that she is having a garage sale this weekend and Zack and Ben will have a lemonade stand. All profits will be donated to ALS research.
Sell lots of lemonade boys; we need to find a cure, so that in the future, no one will suffer with this disease.
cheryl
He continues to shed tears easily, especially when he says goodbye to our kids and grandkids or when he is saddened by a friend’s misfortunate or touched by an act of kindness.
On Sunday he opened a fortune cookie that said:
"Your family is your masterpiece "
He thought about it for a few days and decided that the purpose of the fortune was to tell him that his work is complete. His family can take care of themselves. He feels he has managed to help create a sweet and loving family of whom he is so proud. Our children and their spouses are people whom we really like. They are accomplished and are good and kind people.
Joel emailed to tell us that his former college room mate and dear friend, Neal B. would like to fly down to Sarasota from NYC for the day to visit us. Marla phoned yesterday to tell us that she is having a garage sale this weekend and Zack and Ben will have a lemonade stand. All profits will be donated to ALS research.
Sell lots of lemonade boys; we need to find a cure, so that in the future, no one will suffer with this disease.
cheryl
Monday, August 1, 2011
We Get By With A Lot of Help From Our Friends
Neil is a study in resilence and adaptability. He reminds me everyday that the human spirit can soar while the body is mal functioning. When am sad or express pity, he reminds me that there are so many who are worse of than he is. How did he get to be so mentally healthy? Where does that strength come from? He continues to be my teacher/hero.
He has been in bed for 3 wks 24/7. But having said that, we do have our angel team in
place. Yesterday Paul Roth was in town and a mtg of the men's club was called and held in our bedroom, which is also our living room,dinning room and sleeping room.
People stream in and out.. new friends and old friends. Delores, our health care aide has a new puppy, Blossom, who gets in bed with Neil each moring and snuggles with him and makes us both smile. She is a cutie and we encourage Delores to bring her everyday.She is very well behaved and we are fond of her. Blossom thinks this is her home.
Tomorrow I will go to an art retreat with my art group and Paul will come over and be with Neil. So kind of him as his daughter and grandaugher are also here.
Ron and Pat Rabin are in town and they remind us so much of us when we first moved here. They are having fun fixing up their house and are discovering the fascinating little nooks and crannies of Saraosta. I only wish Neil were able to give him his special Sarasota tour.. he so enjoyed giving it... He thinks of it as his town.
I encourage Neil to get out of bed, but because his heart is so weak, he is recluctant to even try. Last time he did, he got very sick.
His bed is safe and he has control over his surroundings. He has difficulty turning the pages of newspapers and books, so I read to him and he loves that. I enjoy it too. I read him the Huffinton Post and am in the middle of a good mystery. Evenings are my favorite time with him.. the day is done and we can read, talk, watch a movie etc.
Delores is a love, but it is another person in the house. Neil and I enjoy our private time together.
We both feel that we are lucky to have found each other and to have had the good fortune to move to Sarasota. We have had such a grand tme living here..... operas, shul events, beach, theather, parties and so many deliciously wonderful friends. We are truly farklepmt by the love extended to us from both new and old friends.. last nite two neighbors we barely know called to offer to come and stay with Neil or grocery shop etc... I hope I have the strength, sensitivity to pay it forward.
Both Goldie and Jennifer Singer our wonderful rabbis have been a source of love, light, strength..
Our children/grandchildren are our secret weapon. We live for the funny stories, pix and videos and visits from them.. of which there has been an abundance.
Neil is happy to just hold their hands and look at their faces.
Morgan, our hospice nurse visited today; she and neil have a special bond.
I wish I could video tape her visits. I usually walk in the door to bursts of laughter.
She is tough and honest, nohting is sugar coated. But she is smart and kind and it is clear that she cares for us and has our best interests at heart.
We have both become so fond of her. When she comes, Delores pull up a chair and gets ready for the banter.. Only Neil could turn a session with a hospice nurse into a comedy hour.
Love and peace to all of you from us.
Cheryl
He has been in bed for 3 wks 24/7. But having said that, we do have our angel team in
place. Yesterday Paul Roth was in town and a mtg of the men's club was called and held in our bedroom, which is also our living room,dinning room and sleeping room.
People stream in and out.. new friends and old friends. Delores, our health care aide has a new puppy, Blossom, who gets in bed with Neil each moring and snuggles with him and makes us both smile. She is a cutie and we encourage Delores to bring her everyday.She is very well behaved and we are fond of her. Blossom thinks this is her home.
Tomorrow I will go to an art retreat with my art group and Paul will come over and be with Neil. So kind of him as his daughter and grandaugher are also here.
Ron and Pat Rabin are in town and they remind us so much of us when we first moved here. They are having fun fixing up their house and are discovering the fascinating little nooks and crannies of Saraosta. I only wish Neil were able to give him his special Sarasota tour.. he so enjoyed giving it... He thinks of it as his town.
I encourage Neil to get out of bed, but because his heart is so weak, he is recluctant to even try. Last time he did, he got very sick.
His bed is safe and he has control over his surroundings. He has difficulty turning the pages of newspapers and books, so I read to him and he loves that. I enjoy it too. I read him the Huffinton Post and am in the middle of a good mystery. Evenings are my favorite time with him.. the day is done and we can read, talk, watch a movie etc.
Delores is a love, but it is another person in the house. Neil and I enjoy our private time together.
We both feel that we are lucky to have found each other and to have had the good fortune to move to Sarasota. We have had such a grand tme living here..... operas, shul events, beach, theather, parties and so many deliciously wonderful friends. We are truly farklepmt by the love extended to us from both new and old friends.. last nite two neighbors we barely know called to offer to come and stay with Neil or grocery shop etc... I hope I have the strength, sensitivity to pay it forward.
Both Goldie and Jennifer Singer our wonderful rabbis have been a source of love, light, strength..
Our children/grandchildren are our secret weapon. We live for the funny stories, pix and videos and visits from them.. of which there has been an abundance.
Neil is happy to just hold their hands and look at their faces.
Morgan, our hospice nurse visited today; she and neil have a special bond.
I wish I could video tape her visits. I usually walk in the door to bursts of laughter.
She is tough and honest, nohting is sugar coated. But she is smart and kind and it is clear that she cares for us and has our best interests at heart.
We have both become so fond of her. When she comes, Delores pull up a chair and gets ready for the banter.. Only Neil could turn a session with a hospice nurse into a comedy hour.
Love and peace to all of you from us.
Cheryl
Saturday, July 16, 2011
July 15
Everyday is a new normal. Wednesday both 911 and hospice were here when
Neil's catheter backed up and caused him much pain. Hospice finally got here after a two hour wait. (They are not 911, they reminded me and the nurse was with other patients).
When the nurse got here, she changed the cath (for the 3rd time.. a painful procedure)
His body seems to be rejecting it and he may also have another infection
Neil has been so upbeat until this week. It has been 7 days since he has been able to get out of bed. His heart is very weak; getting out of bed even with the hoyer zaps his strength. A week ago today, we went to his favorite restaurant, but had to come back home before ordering, because he became so ill.
My dear friend Marcella lent me a set of lovely Buddist tapes by Joan Halifax on "Being with Dying". The tapes are comforting/balancing/soothing/realistic They talk about death as liberation, a path to freedom from suffering, despite the pain of leaving all you love and know behind. They speak of the inevitibility of death for all of us, which we well know deep in the recesses of our mind.
For my much loved and adored Neil to be liberated from the pain of not being able to move, from the sorrow of not being able to do anything for himself and for or the sadness of not being able to leave his bed and being confined to the bedroom death would be liberating The fact that he has been able to remain so upbeat until now is a testement to his strong spirit and feistiness.
Delores, our capable health care worker says. "I will always think of Neil, not as a sick person, but as a gentle man with a huge heart.If anyone has a right to throw in the towel, he does, but he fights and tries to take care of others despite his own illness.
As I help him, he tries to help me help him. But every movement exhausts him. He is an amazing man, a man of kindness and great sensitivity. It is an honor for me to serve him in this capacity, an honor to be in his presence. He makes it easy for me to do what I love to do."
Delores is our CNA and has become part of our family. She has won the heart of our grandsons. When Zack calls us, then he asks to speak to Delores. She has a winning way with children. He taught he rummy cube and she was wowed by Ben's songs and magic tricks. When Marla and Mike left for Buffalo, they bought her gifts, one of which was a large coffee mug that said "You are one person in the world, but the world to one person."
Neil waits each day for her arrival and trusts her to meet his needs. She reminds me to take a nap and to take care of myself. Delores is part black, part native American and has much wisdom. She was a medic in the army. The VA has helped her to find a job and an apartment and fate/divine intervention brought her to us. May she be blessed as she has blessed us.
Cheryl
Neil's catheter backed up and caused him much pain. Hospice finally got here after a two hour wait. (They are not 911, they reminded me and the nurse was with other patients).
When the nurse got here, she changed the cath (for the 3rd time.. a painful procedure)
His body seems to be rejecting it and he may also have another infection
Neil has been so upbeat until this week. It has been 7 days since he has been able to get out of bed. His heart is very weak; getting out of bed even with the hoyer zaps his strength. A week ago today, we went to his favorite restaurant, but had to come back home before ordering, because he became so ill.
My dear friend Marcella lent me a set of lovely Buddist tapes by Joan Halifax on "Being with Dying". The tapes are comforting/balancing/soothing/realistic They talk about death as liberation, a path to freedom from suffering, despite the pain of leaving all you love and know behind. They speak of the inevitibility of death for all of us, which we well know deep in the recesses of our mind.
For my much loved and adored Neil to be liberated from the pain of not being able to move, from the sorrow of not being able to do anything for himself and for or the sadness of not being able to leave his bed and being confined to the bedroom death would be liberating The fact that he has been able to remain so upbeat until now is a testement to his strong spirit and feistiness.
Delores, our capable health care worker says. "I will always think of Neil, not as a sick person, but as a gentle man with a huge heart.If anyone has a right to throw in the towel, he does, but he fights and tries to take care of others despite his own illness.
As I help him, he tries to help me help him. But every movement exhausts him. He is an amazing man, a man of kindness and great sensitivity. It is an honor for me to serve him in this capacity, an honor to be in his presence. He makes it easy for me to do what I love to do."
Delores is our CNA and has become part of our family. She has won the heart of our grandsons. When Zack calls us, then he asks to speak to Delores. She has a winning way with children. He taught he rummy cube and she was wowed by Ben's songs and magic tricks. When Marla and Mike left for Buffalo, they bought her gifts, one of which was a large coffee mug that said "You are one person in the world, but the world to one person."
Neil waits each day for her arrival and trusts her to meet his needs. She reminds me to take a nap and to take care of myself. Delores is part black, part native American and has much wisdom. She was a medic in the army. The VA has helped her to find a job and an apartment and fate/divine intervention brought her to us. May she be blessed as she has blessed us.
Cheryl
Saturday, June 25, 2011
Precious Lord
In spite of not being able to get out of bed today, Neil had a sweet day.
We were not looking forward to having a new CNA for the weekend. Delores, our regular CNA is off on Saturday and Sunday.
When Latisha arrived, we were not impressed.. She was late, got lost on the way and had trouble reading a simple book to Neil. Neil decided to take a nap, so that he could be ready for his visit with Jennifer Singer, our wonderful, rabbi; He looks forward to her visits.
I asked Latisha to do some simple household tasks, while I ran some errands. I left soon after greeting Jennifer who chatted with Neil and sang him several favorite Hebrew songs and listened to his dreams (next blog). His spirits were lifted.
Jennifer is our rabbi but has also become our friend. Tomorrow she leaves for a kallah in Calif, but told Neil that since he can no longer come to temple she would like to hold a shabbat service in our bedroom when she returns in July. We were deeply,deeply touched by this offer. How lucky are we to belong to a temple like Kol HaNeshama.
When Jennifer left, Latisha came into the room to see if he needed anything.She commented on the beauty of the music she heard and told Neil she also liked to sing. In fact, shie told us, she was the aunt of the Sarasota runner up for American Idol! Neil mentioned that he enjoys Mahalia Jackson and gospel music especially the song "Precious Lord". (Google it, if you have not heard it).
Latisha a short andstout, rather non descript woman was suddenly transformed before our eyes into an angel as she belted out her version of Mahalia's "Precious Lord".
As I walked in the door, I was transfixed by the music coming from the bedroom. I thought Mahalia was paying us a visit. Latisha sang several other songs as I stood in awe in the doorway and silently wept along with Neil. The tears and the music flowed.
Latisha could not read, .but boy could she sing. I gave her a standing ovation and she favored us with world's biggest smile and ended with "You are the wind bemath my wings". Neil felt like he had a ringside seat today to two wondeful, moving, unexpected concerts.
The room still echos with her voice and Jennifer's spirit.
Thank you Jennifer, thank you Latisha for the the mitzvah of your special gifts.
You made our day!
Cheryl
I left the house at 3 and returned at 4:30. As i came up the walk, I thought i heard Neil listening to his favorite Mahalia Jackson CD playing. As I entered the bedroom, I was taken by surprise to hear Latisha singing Precious Lord, followed by You are My Hero. She sang so beautifully that my eyes welled up with tears and I stood in the doorway and wept, big soulful tears. Latisha could not read,but boy cold she sing.
We were not looking forward to having a new CNA for the weekend. Delores, our regular CNA is off on Saturday and Sunday.
When Latisha arrived, we were not impressed.. She was late, got lost on the way and had trouble reading a simple book to Neil. Neil decided to take a nap, so that he could be ready for his visit with Jennifer Singer, our wonderful, rabbi; He looks forward to her visits.
I asked Latisha to do some simple household tasks, while I ran some errands. I left soon after greeting Jennifer who chatted with Neil and sang him several favorite Hebrew songs and listened to his dreams (next blog). His spirits were lifted.
Jennifer is our rabbi but has also become our friend. Tomorrow she leaves for a kallah in Calif, but told Neil that since he can no longer come to temple she would like to hold a shabbat service in our bedroom when she returns in July. We were deeply,deeply touched by this offer. How lucky are we to belong to a temple like Kol HaNeshama.
When Jennifer left, Latisha came into the room to see if he needed anything.She commented on the beauty of the music she heard and told Neil she also liked to sing. In fact, shie told us, she was the aunt of the Sarasota runner up for American Idol! Neil mentioned that he enjoys Mahalia Jackson and gospel music especially the song "Precious Lord". (Google it, if you have not heard it).
Latisha a short andstout, rather non descript woman was suddenly transformed before our eyes into an angel as she belted out her version of Mahalia's "Precious Lord".
As I walked in the door, I was transfixed by the music coming from the bedroom. I thought Mahalia was paying us a visit. Latisha sang several other songs as I stood in awe in the doorway and silently wept along with Neil. The tears and the music flowed.
Latisha could not read, .but boy could she sing. I gave her a standing ovation and she favored us with world's biggest smile and ended with "You are the wind bemath my wings". Neil felt like he had a ringside seat today to two wondeful, moving, unexpected concerts.
The room still echos with her voice and Jennifer's spirit.
Thank you Jennifer, thank you Latisha for the the mitzvah of your special gifts.
You made our day!
Cheryl
I left the house at 3 and returned at 4:30. As i came up the walk, I thought i heard Neil listening to his favorite Mahalia Jackson CD playing. As I entered the bedroom, I was taken by surprise to hear Latisha singing Precious Lord, followed by You are My Hero. She sang so beautifully that my eyes welled up with tears and I stood in the doorway and wept, big soulful tears. Latisha could not read,but boy cold she sing.
Wednesday, June 22, 2011
Metamorphsis
Kafka woke up one am transformed into an insect.
Neil wakes up each morning also transformed ... Each morning he finds
peices of himself missing, both mentally and physically... nite brings changes; changes we do not want.
Yesterday, he could brush his teeth himself, today he cannot. Yesterday he could balance
the check book, today he cannot . He has a infection in his cathether; Friday he will start
anti biotics; the anti biotics, the nurse tells us may cause mental confusion.
Happy Days, (Beckett), one of neil's favorite plays is about a couple who awake buried in sand up to their ankles. Each day the sand gets higher,but the happy couple say 'Oh well our ankles may be buried, but at least we can still see our knees."As the knees become buried, they say "Oh well at least we can use our arms". Get the pix?
Happy Days is a metaphor for growing older and we are a metaphor for Happy Days.
We are living Happy Days in real time.
A weak heart and an advancing ALS plays havoc with the body and the mind of both the patient and the caregiver. Neil is smart and aware enough to know it is happening. He asks to be released from his body, which now imprisons him.
We have two rabbi's at our Sarasota temple, who are both amazing. Goldie Milgram is our winter rabbi living in Philly and traveling, but calls often. She called him yesterday and spoke to him for an hour. He loves talking to her. They talk and she sings to him.
She counsels him and soothes him.
Reb Jennifer Singer our summer rabbi is one special person.. She is smart, funny, and full of love and great energy. She visited us at the hospice house and has offered to come to our home for visit. Thank you Reb Goldie and Reb Jennifer for your love, wisdom and compassion. You are part of our angel team, as our our kids, grandkids, and freinds.
Our temple family are also part of our angel team. They bake offer to visit, bring food and lend an ear when needed. We are blessed to be members of this scared community.
Delores, our aide takes cares of both of us.. she bathes and dresses neil and is his therapist.
She cleans, cooks, shops, does errands and answers the phone when we are too tired to talk. She knows when I need a nap and encourages me to lie down.
She has just taken him out for breakfast, so i cd get cuaght up with things.
My heart goes out to people everywhere who are dealing with this and other aillments.
My heart goes out to caretakers who watch their loved ones metamorphize/melt away.
My heart goes out to us and to our freinds who love us and watch this process with us.
I wish it were easier for everyone who must deal with illness.
Cheryl
Neil wakes up each morning also transformed ... Each morning he finds
peices of himself missing, both mentally and physically... nite brings changes; changes we do not want.
Yesterday, he could brush his teeth himself, today he cannot. Yesterday he could balance
the check book, today he cannot . He has a infection in his cathether; Friday he will start
anti biotics; the anti biotics, the nurse tells us may cause mental confusion.
Happy Days, (Beckett), one of neil's favorite plays is about a couple who awake buried in sand up to their ankles. Each day the sand gets higher,but the happy couple say 'Oh well our ankles may be buried, but at least we can still see our knees."As the knees become buried, they say "Oh well at least we can use our arms". Get the pix?
Happy Days is a metaphor for growing older and we are a metaphor for Happy Days.
We are living Happy Days in real time.
A weak heart and an advancing ALS plays havoc with the body and the mind of both the patient and the caregiver. Neil is smart and aware enough to know it is happening. He asks to be released from his body, which now imprisons him.
We have two rabbi's at our Sarasota temple, who are both amazing. Goldie Milgram is our winter rabbi living in Philly and traveling, but calls often. She called him yesterday and spoke to him for an hour. He loves talking to her. They talk and she sings to him.
She counsels him and soothes him.
Reb Jennifer Singer our summer rabbi is one special person.. She is smart, funny, and full of love and great energy. She visited us at the hospice house and has offered to come to our home for visit. Thank you Reb Goldie and Reb Jennifer for your love, wisdom and compassion. You are part of our angel team, as our our kids, grandkids, and freinds.
Our temple family are also part of our angel team. They bake offer to visit, bring food and lend an ear when needed. We are blessed to be members of this scared community.
Delores, our aide takes cares of both of us.. she bathes and dresses neil and is his therapist.
She cleans, cooks, shops, does errands and answers the phone when we are too tired to talk. She knows when I need a nap and encourages me to lie down.
She has just taken him out for breakfast, so i cd get cuaght up with things.
My heart goes out to people everywhere who are dealing with this and other aillments.
My heart goes out to caretakers who watch their loved ones metamorphize/melt away.
My heart goes out to us and to our freinds who love us and watch this process with us.
I wish it were easier for everyone who must deal with illness.
Cheryl
Sunday, June 12, 2011
Thoughts from Neil
Thoughts from Neil on June 12, 2011
I feel as if I am being gently embraced and rocked by a huge and loving group of friends and family from Hawaii to Vancouver to NYC and so many places in between. I especially feel the love from my children and my Kol Ha’ Neshama family as I am being slowly and lovingly transported to another place.
My bags are packed with unbelievable memories of the past and recent present, bits and pieces of my persona and psyche and even some of my potentially useful shticks. In the distance I see legions of ancestors
waiting to meet me at the portals with welcoming and outstretched arms to help guide me on the next step of my journey, wherever it may lead.
I feel as if I am being gently embraced and rocked by a huge and loving group of friends and family from Hawaii to Vancouver to NYC and so many places in between. I especially feel the love from my children and my Kol Ha’ Neshama family as I am being slowly and lovingly transported to another place.
My bags are packed with unbelievable memories of the past and recent present, bits and pieces of my persona and psyche and even some of my potentially useful shticks. In the distance I see legions of ancestors
waiting to meet me at the portals with welcoming and outstretched arms to help guide me on the next step of my journey, wherever it may lead.
Wednesday, June 8, 2011
Dorothy was right
Dorothy was right... there is no place like home.. altered as it is with a large, new hoyer, 2 wheel chairs and various oxygen machines etc.
Neil got into the hoyer and we went to breakfast with with Mary, Moe and Delores our CNA.
After 3 days in bed, getting out in his wheel.chair was the equivalent to going to the French Riveria.. Mary said the look on Neil's face made her cry. I stayed home and attempted to gather my wits about me and breathe.
We lucked out with Delores, a kind/capable health care worker.. Neil told the agency to only send us CNA's who are Democrats and without missing a beat, the agency said "Of course, we only hire democrats....... an agency with a sense of humor. We like that, but little did she know we were not kidding.
We are on a high learning curve with the hoyer. We had our first lesson today with Morgan, our hospice nurse, Delores and Moe Lipson and me. We need two people to manage it. Getting into the hoyer is like the game of trust we used to play when u fall backwards into the arms of friends who u hope will catch you. It is an exercise in faith for Neil. He is getting used to it.
Mary and Moe are our guardian angels. She brought dinner last nite and tonite is bringing veal stew with grilled romanine and goat cheese (salmon for me).
Delores shops, cooks, cleans takes care of Neil and makes us take naps and right now, she is organizing our closets while we wait for our gourmet dinner.
I fear that if Neil had it to do over, he wd marry Delores. Between our hospice team, our , the nice emails from everyone and Delores we are continuing to enjoy the ride., bumpy though it may be.
Cheryl
Neil got into the hoyer and we went to breakfast with with Mary, Moe and Delores our CNA.
After 3 days in bed, getting out in his wheel.chair was the equivalent to going to the French Riveria.. Mary said the look on Neil's face made her cry. I stayed home and attempted to gather my wits about me and breathe.
We lucked out with Delores, a kind/capable health care worker.. Neil told the agency to only send us CNA's who are Democrats and without missing a beat, the agency said "Of course, we only hire democrats....... an agency with a sense of humor. We like that, but little did she know we were not kidding.
We are on a high learning curve with the hoyer. We had our first lesson today with Morgan, our hospice nurse, Delores and Moe Lipson and me. We need two people to manage it. Getting into the hoyer is like the game of trust we used to play when u fall backwards into the arms of friends who u hope will catch you. It is an exercise in faith for Neil. He is getting used to it.
Mary and Moe are our guardian angels. She brought dinner last nite and tonite is bringing veal stew with grilled romanine and goat cheese (salmon for me).
Delores shops, cooks, cleans takes care of Neil and makes us take naps and right now, she is organizing our closets while we wait for our gourmet dinner.
I fear that if Neil had it to do over, he wd marry Delores. Between our hospice team, our , the nice emails from everyone and Delores we are continuing to enjoy the ride., bumpy though it may be.
Cheryl
Monday, June 6, 2011
June 6, 2011
If all goes according to plan, we will be back in our condo tomorrow at aprox 3:00 pm.
The ALS symptoms are getting worse. Also Neil has had several heart issues this week. Hospice feels his stymptoms are being "controlled" and we are going home. This is not a long term stay facility. We have been here for 2 weeks.
He is anxious to be home in his own bed and familiar surroundings. We will have help in the house.
He has bad days and worse days lately. The morphine makes him hallucinate, but it is the only thing that helps him when his heart acts up. I have been sleeping on a airbed next to him at the hospice house; that is a comfort to both of us. He is emotional and weepy at times (who wouldn't be?) He has been in bed for over 48 hrs straight. The hospice people here at the facility mishandled the hoyer while gettting him in and hurt him badly; he was in pain for 2 days and now he is afraid to try it again.
The hoyer is the only way he can get into his wheel chair. A new hoyer was delivered to our home today; I will learn how to use it tomorrow. We both hate what is happening, but it is our reality and we are dealing with it as best we can.
Neil feels bad that he has put this burden/worry on his friends and loved ones, but that's Neil. I reassure him that he did not choose to have this disease.
Our friend Terry Haines, whose husband Jack died of ALS, says it is known as the nice guys disease. Small comfort.
Join me in helping to find/fundraise for a cure. Let no one suffer like this.
It will be one of my life's goals.
Cheryl
The ALS symptoms are getting worse. Also Neil has had several heart issues this week. Hospice feels his stymptoms are being "controlled" and we are going home. This is not a long term stay facility. We have been here for 2 weeks.
He is anxious to be home in his own bed and familiar surroundings. We will have help in the house.
He has bad days and worse days lately. The morphine makes him hallucinate, but it is the only thing that helps him when his heart acts up. I have been sleeping on a airbed next to him at the hospice house; that is a comfort to both of us. He is emotional and weepy at times (who wouldn't be?) He has been in bed for over 48 hrs straight. The hospice people here at the facility mishandled the hoyer while gettting him in and hurt him badly; he was in pain for 2 days and now he is afraid to try it again.
The hoyer is the only way he can get into his wheel chair. A new hoyer was delivered to our home today; I will learn how to use it tomorrow. We both hate what is happening, but it is our reality and we are dealing with it as best we can.
Neil feels bad that he has put this burden/worry on his friends and loved ones, but that's Neil. I reassure him that he did not choose to have this disease.
Our friend Terry Haines, whose husband Jack died of ALS, says it is known as the nice guys disease. Small comfort.
Join me in helping to find/fundraise for a cure. Let no one suffer like this.
It will be one of my life's goals.
Cheryl
Friday, June 3, 2011
Club Med Hospice Style
Neil was greeted yesterday morning by two hospice workers who burst into his room
laughing and singing hyms to him. (This is a day the Lord has made, be happy and rejoice in it). They opened the curtains to his spacious room
which then became flooded with light. Neil told them he felt he was at the gates of
paradise. Continuing his day, he got into his hoyer and we went into the
garden, where we sat for 2 hrs enthralled by the landscape... watching the birds, dragonflies, butterflies, cows (yes, there is a cow pasture) . I read to him from his book (Story of a Marriage, Andrew Greer) and for what seemed like the first time in ages we felt at peace, just enjoying the scenery and each other's company.
The glorious morning was completed when the staff brought him breakfast out on the patio. Interrupted only by the doctor stopping by to take his blood pressure and listen to his heart.
Neil said there was no day that he can remember that was nicer. He is so good at appreciating life's simple pleasures. He reminds me to do that too..
Thank you for your pledges and offers to pledge to the Giggle Foundatioin. We will let you know when it is set up. Neil worked on the brochure today and is anxious to start making it happen. Will keep you posted.
Cheryl and Neil
laughing and singing hyms to him. (This is a day the Lord has made, be happy and rejoice in it). They opened the curtains to his spacious room
which then became flooded with light. Neil told them he felt he was at the gates of
paradise. Continuing his day, he got into his hoyer and we went into the
garden, where we sat for 2 hrs enthralled by the landscape... watching the birds, dragonflies, butterflies, cows (yes, there is a cow pasture) . I read to him from his book (Story of a Marriage, Andrew Greer) and for what seemed like the first time in ages we felt at peace, just enjoying the scenery and each other's company.
The glorious morning was completed when the staff brought him breakfast out on the patio. Interrupted only by the doctor stopping by to take his blood pressure and listen to his heart.
Neil said there was no day that he can remember that was nicer. He is so good at appreciating life's simple pleasures. He reminds me to do that too..
Thank you for your pledges and offers to pledge to the Giggle Foundatioin. We will let you know when it is set up. Neil worked on the brochure today and is anxious to start making it happen. Will keep you posted.
Cheryl and Neil
typo's
Sorry for all the typo's on my blog. I usually type late at nite, when i am tired.
Just re read it and saw all the mistakes. oh well, u still get the gist.
c
Just re read it and saw all the mistakes. oh well, u still get the gist.
c
Homeword Bound
Hopsice says neil has "stablized"and we will be going home probably on
Monday. We will have help in the house, along with our former hospice
team. As I sit here and observe the nurse, the aides, the bathers, the cooks, the dishwashers, the room cleaners, the social worker do their jobs, I realize I was
doing all of these jobs. I had no time to just sit and be with Neil
I have had time to do that here. I have had time to read to him and just sit
talk., watch TV together, etc.
Thank you to all of you have visited us here. Seeing your cheery faces brightened
our day and made the time pass much more quickly. Also thank you to everyone
for giving me freedom from answering the phone. I have needed any extra time
I have had to clear my head and hear my own voice.
Cheryl
Monday. We will have help in the house, along with our former hospice
team. As I sit here and observe the nurse, the aides, the bathers, the cooks, the dishwashers, the room cleaners, the social worker do their jobs, I realize I was
doing all of these jobs. I had no time to just sit and be with Neil
I have had time to do that here. I have had time to read to him and just sit
talk., watch TV together, etc.
Thank you to all of you have visited us here. Seeing your cheery faces brightened
our day and made the time pass much more quickly. Also thank you to everyone
for giving me freedom from answering the phone. I have needed any extra time
I have had to clear my head and hear my own voice.
Cheryl
Friday June 3
Neil has been playing with an idea that he has finally been able
to articulate.
He has beeb talking alot about sick/w.chair bound children.
He said he only has had to live with suffering and with a w.chair for a short time,
but he is keenly aware that there are children who have to live this way
for their whole life. Since humor have humor and laughter have been
a lifeline for him him during this time, he gas been brainstorming on ways
to improve the lot of sick children.
On Wednesday after a call to Peter Fleischman, from
Jewish Philanthropies in Bflo, we are establishing The Giggle Foundation.
We will contribute seed $ and then seek contributions.
The foundation's goal will be to bring laughter and
joy into the lives of sick children in both Bflo and Sarasota.
We are especially interested in a program that Hospice has
established called Partners in Caring which serves sick children on medicad.
We would like to help fund clowns, story tellers, magicians, gift bags and scholarships to camps. The fund will be managed by the
Foundation for Jewish Philanthopies in Bflo and all contributions will go
to them. Hopefully the paperwork will be in place in a week or so.
Our children and their spouses to be the board of directors
and we would like our grandchilren (who are 7,6 and 5) to be involved in some
of the decision making. It is Neil's hope that this will contribute to their awareness
of tzedakah (good deeds).
We know that many organizations like this exist;
we will add our voices/energy /funding to the mix. Neil is
very excited about this project and has been talking to people
and collecting ideas. It has given him new purpose.
As we sat in the garden and talked yesterday, Neil chastised himself
for waitng until he was sick to become more concerned with providing for
suffering children. He said he was too busy with other things to think much
about it. But I reminded him how untrue that was. After retirement, he drove
cancer patients to apts and worked for literacy volunteers . In addtion to
his receiving the freshman advocate award and creating support
services for needy students as Bflo State.
to articulate.
He has beeb talking alot about sick/w.chair bound children.
He said he only has had to live with suffering and with a w.chair for a short time,
but he is keenly aware that there are children who have to live this way
for their whole life. Since humor have humor and laughter have been
a lifeline for him him during this time, he gas been brainstorming on ways
to improve the lot of sick children.
On Wednesday after a call to Peter Fleischman, from
Jewish Philanthropies in Bflo, we are establishing The Giggle Foundation.
We will contribute seed $ and then seek contributions.
The foundation's goal will be to bring laughter and
joy into the lives of sick children in both Bflo and Sarasota.
We are especially interested in a program that Hospice has
established called Partners in Caring which serves sick children on medicad.
We would like to help fund clowns, story tellers, magicians, gift bags and scholarships to camps. The fund will be managed by the
Foundation for Jewish Philanthopies in Bflo and all contributions will go
to them. Hopefully the paperwork will be in place in a week or so.
Our children and their spouses to be the board of directors
and we would like our grandchilren (who are 7,6 and 5) to be involved in some
of the decision making. It is Neil's hope that this will contribute to their awareness
of tzedakah (good deeds).
We know that many organizations like this exist;
we will add our voices/energy /funding to the mix. Neil is
very excited about this project and has been talking to people
and collecting ideas. It has given him new purpose.
As we sat in the garden and talked yesterday, Neil chastised himself
for waitng until he was sick to become more concerned with providing for
suffering children. He said he was too busy with other things to think much
about it. But I reminded him how untrue that was. After retirement, he drove
cancer patients to apts and worked for literacy volunteers . In addtion to
his receiving the freshman advocate award and creating support
services for needy students as Bflo State.
Monday, May 30, 2011
Memorial Day
How to describe the emotions we feel and the ups and downs of each day?
Words are inadequate, but i will try.
We have known love and compassion for sure, but to experience it to the zenith, walk into a hospice house. It is a unique collection of souls. A place of physical and spiritual beauty. Residents, visitors and workers all ready to embracce you, hold your hand and offer words of wisdom to guide on this part of the journey. A journey filled with pain, tears, yearingng, reminiscing, laughter; friends from far and near, family, and the voices of ancestors who appear when you least expect them.
I sleep at the hospice house on a cot next to neil's bed.. When he woke this am, he said he missed the bus.. he got there too late and it left without him. He does not want to live like this..so dependent on others for everything. I talk to the wives of the other patients whose husbands are dying. We share a special bond that only we understand.
I came to the condo to take care of some things and phoned from there. Much to my surprise his voice was happy, excited and he was giggling so hard he cd barely talk.
What happened you might ask?
Before we enetered hospice house we had a hospice home team and a very special nurse, a young woman, with an old soul, Morgan Thomas.. She is 24, but can keep up with Neil's witt and humor and even one up him. They became quick friends and when she came to visit at our home , she sat on the bed, ate ice cream with us and we giggled together as we figured out our next move. She is no longer his nurse now that he entered the hospice facility, but today, on her day off from work, she made the trek to visit him. He was delighted and as I write this she is visiting. I could hear the joy in his voice.
Neil is one of the most creative, generous, compassionate people i have ever met .More on that in my next post.
cheryl
Words are inadequate, but i will try.
We have known love and compassion for sure, but to experience it to the zenith, walk into a hospice house. It is a unique collection of souls. A place of physical and spiritual beauty. Residents, visitors and workers all ready to embracce you, hold your hand and offer words of wisdom to guide on this part of the journey. A journey filled with pain, tears, yearingng, reminiscing, laughter; friends from far and near, family, and the voices of ancestors who appear when you least expect them.
I sleep at the hospice house on a cot next to neil's bed.. When he woke this am, he said he missed the bus.. he got there too late and it left without him. He does not want to live like this..so dependent on others for everything. I talk to the wives of the other patients whose husbands are dying. We share a special bond that only we understand.
I came to the condo to take care of some things and phoned from there. Much to my surprise his voice was happy, excited and he was giggling so hard he cd barely talk.
What happened you might ask?
Before we enetered hospice house we had a hospice home team and a very special nurse, a young woman, with an old soul, Morgan Thomas.. She is 24, but can keep up with Neil's witt and humor and even one up him. They became quick friends and when she came to visit at our home , she sat on the bed, ate ice cream with us and we giggled together as we figured out our next move. She is no longer his nurse now that he entered the hospice facility, but today, on her day off from work, she made the trek to visit him. He was delighted and as I write this she is visiting. I could hear the joy in his voice.
Neil is one of the most creative, generous, compassionate people i have ever met .More on that in my next post.
cheryl
Sunday, May 29, 2011
May 29
Dear Friends,
We are both soul weary. This is a very difficult time for u and our family and for all who love us.
Marla left this am, but my sister and her family are here. Such a gift. They bring love, and laughter and good conversation.
Neil has been very chatty. Yesterday after being in bed for 4 days the nurses used the hoyer to put him
In his wheelchair and he was able to take a spin around the grounds , after which joel and marla and Brenda and her family , neil and I all had dinner together in the dinning room. It was such a treat for neil to be out of bed. We will try to get him out every day. He was going stir crazy.. He is still amazing in so many ways.
He is very aware of what is happening to him. Each day he grows weaker and can do less. How does one live watching pieces of him/herself disappear each day?
Hospice is wonderful. All of the workers kind/compassionate/loving. He has charmed all of the nurses, no surprise there.
They will evaluate him this week and tell us where they think we shd go from here.
cheryl
We are both soul weary. This is a very difficult time for u and our family and for all who love us.
Marla left this am, but my sister and her family are here. Such a gift. They bring love, and laughter and good conversation.
Neil has been very chatty. Yesterday after being in bed for 4 days the nurses used the hoyer to put him
In his wheelchair and he was able to take a spin around the grounds , after which joel and marla and Brenda and her family , neil and I all had dinner together in the dinning room. It was such a treat for neil to be out of bed. We will try to get him out every day. He was going stir crazy.. He is still amazing in so many ways.
He is very aware of what is happening to him. Each day he grows weaker and can do less. How does one live watching pieces of him/herself disappear each day?
Hospice is wonderful. All of the workers kind/compassionate/loving. He has charmed all of the nurses, no surprise there.
They will evaluate him this week and tell us where they think we shd go from here.
cheryl
Friday, May 27, 2011
May 27
Neil very low/emotional today. Our kids are here, my sister and her hubby and her kids arrive tomorrow. It will be quiet when everyone leaves.
We had a busy morning. The chaplin came followed by the grief counselor, followed by the social worker, followed by the therapy dog.
Then someone came to turn off Neil's debfrillator... very traumatic.
It has served him well. He is totally paralyized. he cannot move his body at all.
So hard for someone who has been such an independent man to be so dependent.
He hates being so dependent and feels safest and most comfortable in bed.
Today he is alert and seems to be enjoying all of the company/attention.
Saying goodby to people is always heart wrenching.
It is very beautiful here at the Ellenton Hospice House.. we have a large room with comfy chairs and sofas and a screened lani. We have pond view and there is a cow pasture. There are beautiful gardens with an orchid house and an herb garden.
The workers here are all so nice/kind/attentive. They will reasses him on Tues or Wed.
cheryl
We had a busy morning. The chaplin came followed by the grief counselor, followed by the social worker, followed by the therapy dog.
Then someone came to turn off Neil's debfrillator... very traumatic.
It has served him well. He is totally paralyized. he cannot move his body at all.
So hard for someone who has been such an independent man to be so dependent.
He hates being so dependent and feels safest and most comfortable in bed.
Today he is alert and seems to be enjoying all of the company/attention.
Saying goodby to people is always heart wrenching.
It is very beautiful here at the Ellenton Hospice House.. we have a large room with comfy chairs and sofas and a screened lani. We have pond view and there is a cow pasture. There are beautiful gardens with an orchid house and an herb garden.
The workers here are all so nice/kind/attentive. They will reasses him on Tues or Wed.
cheryl
Thursday, May 26, 2011
update from hospice house
Dear Friends,
Neil was moved to hospice house yesterday. It is a lovely place with wonderful people.
Our kids are here now along with ron rabin. they are laughing and talking and having fun.
Neil is at his best when whe is entertaining and around people.. it is his vitiman B12.
I had a talk with the hospice nurse today. and met the social worker and the dr.
Neil had hit a low point yesterday morning, but after a visit from molly ballow, linda and ron. and rala and russell
he improved dramatically, by the time we got to hospice i was feeling guilty for briinging him here.
We are so grateful for having the most unbelievable friends.. we do not know how to thank u.
There are no words.
The dr here said she will evaluate neil over the next few days and tell us whether he shd stay here or
go whether we shd make other arrangements. that will take 4-5 days. I will need a plan b.
Neil and I are both devasted by the fact that he can no longer get himself into the w.chair.
He has been in bed for several days now, he cannot move his body. He can still feed himself, but cannot
move his legs or his body.. Hospcie ssid they wd try tomorrow to use a hoyer to put hiim in a w.chair and
take him out in the garden.
He is weak and frail and sometimes makes sense and sometimes not.
He is sleeping more and more during the day.. but still lights up when he has company, of which we are fortunate enough to have no shortage.
cheryl
Neil was moved to hospice house yesterday. It is a lovely place with wonderful people.
Our kids are here now along with ron rabin. they are laughing and talking and having fun.
Neil is at his best when whe is entertaining and around people.. it is his vitiman B12.
I had a talk with the hospice nurse today. and met the social worker and the dr.
Neil had hit a low point yesterday morning, but after a visit from molly ballow, linda and ron. and rala and russell
he improved dramatically, by the time we got to hospice i was feeling guilty for briinging him here.
We are so grateful for having the most unbelievable friends.. we do not know how to thank u.
There are no words.
The dr here said she will evaluate neil over the next few days and tell us whether he shd stay here or
go whether we shd make other arrangements. that will take 4-5 days. I will need a plan b.
Neil and I are both devasted by the fact that he can no longer get himself into the w.chair.
He has been in bed for several days now, he cannot move his body. He can still feed himself, but cannot
move his legs or his body.. Hospcie ssid they wd try tomorrow to use a hoyer to put hiim in a w.chair and
take him out in the garden.
He is weak and frail and sometimes makes sense and sometimes not.
He is sleeping more and more during the day.. but still lights up when he has company, of which we are fortunate enough to have no shortage.
cheryl
Wednesday, May 18, 2011
May 18
Health wise it gets a bit worse each day. Neil can do less and less. He hates being so dependent, who wouldn't? His voice is getting weaker and he is having a harder time getting himself out of bed.
Joel is here and that is a big help, but I know it is hard for him to see us this way.
I dread the saying of goodbyes. It is heart wrenching.
Neil's friend Ron is also here for 10 days. He is very tender and kind. He is Neil's guy friend, but also my guy friend. His daughter Nora will be here on Saturday and we also look forward to seeing her smiling face.
Neil says he is sitting shiva for himself. People drop in or email lovely eulogies.
It is shiva and we have been in morning for almost a year now. He sometimes compares it to the old show "This Is Your Life".
I think of Tinkerbell who said something like "Help! My light is fading."
Neil's light is fading and I cannot help, only keep him comfortable and watch.
Wish I had good and happy things to write.. The good things are the wonderful guests who come to visit and share their energy, love and time. These are the gifts we gratefully receive.
Cheryl
Health wise it gets a bit worse each day. Neil can do less and less. He hates being so dependent, who wouldn't? His voice is getting weaker and he is having a harder time getting himself out of bed.
Joel is here and that is a big help, but I know it is hard for him to see us this way.
I dread the saying of goodbyes. It is heart wrenching.
Neil's friend Ron is also here for 10 days. He is very tender and kind. He is Neil's guy friend, but also my guy friend. His daughter Nora will be here on Saturday and we also look forward to seeing her smiling face.
Neil says he is sitting shiva for himself. People drop in or email lovely eulogies.
It is shiva and we have been in morning for almost a year now. He sometimes compares it to the old show "This Is Your Life".
I think of Tinkerbell who said something like "Help! My light is fading."
Neil's light is fading and I cannot help, only keep him comfortable and watch.
Wish I had good and happy things to write.. The good things are the wonderful guests who come to visit and share their energy, love and time. These are the gifts we gratefully receive.
Cheryl
Tuesday, May 17, 2011
May 13 Walking the High Wire
A Beautiful Day. May 13, 2011
Transitions… we are always in transition.. Death being the ultimate transition
and one that we spend much time avoiding.
We are looking this transition in the face. No avoiding it.
We live with it every day.
Moved along and cradled by love from expected and unexpected sources.
Watching Neil accept and deal with his disease and take it on the chin.
I complain more than he does. He is a pragmatist, a realist. So wise,
so mentally healthy. Always my teacher.
Humor is his constant companion as he makes this journey.
I try to imagine living without him and am filled with a feeling of emptiness
He is my friend, my cheerleader, my life partner, my everything.
Dick and Andre arrived yesterday. Our eyes filled with tears seeing them.
We have shared so many, simchas, good times together.
We met for breakfast and then spent the afternoon at the Bayfront,
the town square. We sat on a bench under the banyan trees watching
the world go by. A segway tour stopped in front of our bench
giving tourists a lecture on the trees; we become part of the tour.
Behind us a young man ties a rope to two tress
30 feet apart and begins performing a high wire balancing act. We watch in awe
as he practices his stunts. He takes a break and comes over to talk to us.
He is not with the circus as we first thought. He is a young business man,
who has moved here from Calif. He asks us who we are and where
we are from. Without missing a beat, Neil tells him that he is dying
and that his friends have come to say goodbye.
To his credit the young man takes it all in and before leaving says to Neil,
“I hope you enjoy the rest of your life”.
And that is exactly what we try to do.
Transitions… we are always in transition.. Death being the ultimate transition
and one that we spend much time avoiding.
We are looking this transition in the face. No avoiding it.
We live with it every day.
Moved along and cradled by love from expected and unexpected sources.
Watching Neil accept and deal with his disease and take it on the chin.
I complain more than he does. He is a pragmatist, a realist. So wise,
so mentally healthy. Always my teacher.
Humor is his constant companion as he makes this journey.
I try to imagine living without him and am filled with a feeling of emptiness
He is my friend, my cheerleader, my life partner, my everything.
Dick and Andre arrived yesterday. Our eyes filled with tears seeing them.
We have shared so many, simchas, good times together.
We met for breakfast and then spent the afternoon at the Bayfront,
the town square. We sat on a bench under the banyan trees watching
the world go by. A segway tour stopped in front of our bench
giving tourists a lecture on the trees; we become part of the tour.
Behind us a young man ties a rope to two tress
30 feet apart and begins performing a high wire balancing act. We watch in awe
as he practices his stunts. He takes a break and comes over to talk to us.
He is not with the circus as we first thought. He is a young business man,
who has moved here from Calif. He asks us who we are and where
we are from. Without missing a beat, Neil tells him that he is dying
and that his friends have come to say goodbye.
To his credit the young man takes it all in and before leaving says to Neil,
“I hope you enjoy the rest of your life”.
And that is exactly what we try to do.
Monday, May 2, 2011
day to day
Neil maintains an amazingly good attitude considering he spends most of his day in bed. He does not sleep,but it is where he feels most comfortable.
Today, after the person who bathed him left, the massuse came. A tender, lovely,knowledgable woman (as most hospcie people are).
This was her 2nd visit; she told him that after her first visit, she thought about him all day. She said sees a lot of people, but few with as many things wrong with them as Neil , and few with as good an attitude and as big a smile has he has.. He just charms the pants off of all of the hospice workers. His spirit rises above his illness..
How wish I could infuse him with energy/health. I keep looking for a magic pill that will make this all go away. I sometimes mutter to myself.. "God, please help us, and then i realize, she already has.. We have the gift of hospice and JFS and wonderful friends and family.
We have enjoyed Joan and Jerry who will be back on l Thurs. We have had long talks about living and dying and loving.. No holes barred. We are as honest with each other as anyone could possibly be.
Joan Accurso subcribes to something called heart quotes. It is a service that sends her wonderful quotes on email eveyday... Check it out. the quotes are little gems.
Mary and Moe (aka/ fred and ethel mertz) just stopped in. They always bring us smiles and good cheer. They are leaving next Tues for 3 wks. I can see the worry and concern/love on their sweet faces.
As always we feel surrounded by a warm cozy blanket of love . I don't know how people who do not have this kind of support survive..mabye they don't.
Neil is farklempt and grateful as am I.
Hope the day is good for all of you.
We look forward to our next round of guests.
Namaste.
Today, after the person who bathed him left, the massuse came. A tender, lovely,knowledgable woman (as most hospcie people are).
This was her 2nd visit; she told him that after her first visit, she thought about him all day. She said sees a lot of people, but few with as many things wrong with them as Neil , and few with as good an attitude and as big a smile has he has.. He just charms the pants off of all of the hospice workers. His spirit rises above his illness..
How wish I could infuse him with energy/health. I keep looking for a magic pill that will make this all go away. I sometimes mutter to myself.. "God, please help us, and then i realize, she already has.. We have the gift of hospice and JFS and wonderful friends and family.
We have enjoyed Joan and Jerry who will be back on l Thurs. We have had long talks about living and dying and loving.. No holes barred. We are as honest with each other as anyone could possibly be.
Joan Accurso subcribes to something called heart quotes. It is a service that sends her wonderful quotes on email eveyday... Check it out. the quotes are little gems.
Mary and Moe (aka/ fred and ethel mertz) just stopped in. They always bring us smiles and good cheer. They are leaving next Tues for 3 wks. I can see the worry and concern/love on their sweet faces.
As always we feel surrounded by a warm cozy blanket of love . I don't know how people who do not have this kind of support survive..mabye they don't.
Neil is farklempt and grateful as am I.
Hope the day is good for all of you.
We look forward to our next round of guests.
Namaste.
Sunday, May 1, 2011
Visitors from far and wide
We have had an unbelievably busy/full few days starting with thurs.
Joel and Ellie annd the Accuros were here at the same time on
thrus.mary and moe joined us and we had one big dinner party.
The weiss's left on friday and the Accuro's are staying a wk with a few side trips to visit friends in Naples.
Everyone is so tender and loving .. they just want to help. People come over with soup, cookies, homemade candy etc.
Yesterday we took the Accurso's to the Farmers Mkt (which is always fun) and then we went to a special BarBQ restaurant that dad/neil has been wanting to try..an off beat kind of place owned by a jewish woman who loves to BBQ.
We were able to walk there from the Farmers Mkt.. Unfortunately, dad is loosing his taste for food. He ordres and then cannot eat it. I don't know if if is his taste buds, his stomach or just part of the slowing down process.. He does love and is able to eat, Wendy's Frosty's..so I get him one everyday.
He manages to stay chipper and when Jerry gets weepy and tells dad how much he loves him.. dad tells Jerry to "Buck Up" and pull yourself together.
He tells Jerry that he has had a WONDERFUL LIFE, filled with a job he loved, friends and family he adores.. he has no regrets; from where i sit he is still living life as fully as he possibly can. I think dad is amazed at his populariy, but takes it in stride.. Guess i really picked a good one. All of the company makes my head spin,but it is also a wondreful distraction to both of us.
I remember at Joel and Deb's wedding, the rabbi asked Joel how he wd like to see himself in 40 yrs and the rabbi said that Joel's reply was "I wd like to be rich with love." And that is what i we have and what i wish for each of you.
Last ntie, Jerry made dinner for dad.. (served it and cleaned up!) while Joan and I went to the movies. The people sitting in front of us (the Recoons, whose daugher in lawMike and Mar know) asked us if we knew that there was an article about nel and the walk in the Sarasota news paper that day.
When we got home we found and read it and dad was pleased. one of our freinds from shul had put it in.
Joel and Ellie annd the Accuros were here at the same time on
thrus.mary and moe joined us and we had one big dinner party.
The weiss's left on friday and the Accuro's are staying a wk with a few side trips to visit friends in Naples.
Everyone is so tender and loving .. they just want to help. People come over with soup, cookies, homemade candy etc.
Yesterday we took the Accurso's to the Farmers Mkt (which is always fun) and then we went to a special BarBQ restaurant that dad/neil has been wanting to try..an off beat kind of place owned by a jewish woman who loves to BBQ.
We were able to walk there from the Farmers Mkt.. Unfortunately, dad is loosing his taste for food. He ordres and then cannot eat it. I don't know if if is his taste buds, his stomach or just part of the slowing down process.. He does love and is able to eat, Wendy's Frosty's..so I get him one everyday.
He manages to stay chipper and when Jerry gets weepy and tells dad how much he loves him.. dad tells Jerry to "Buck Up" and pull yourself together.
He tells Jerry that he has had a WONDERFUL LIFE, filled with a job he loved, friends and family he adores.. he has no regrets; from where i sit he is still living life as fully as he possibly can. I think dad is amazed at his populariy, but takes it in stride.. Guess i really picked a good one. All of the company makes my head spin,but it is also a wondreful distraction to both of us.
I remember at Joel and Deb's wedding, the rabbi asked Joel how he wd like to see himself in 40 yrs and the rabbi said that Joel's reply was "I wd like to be rich with love." And that is what i we have and what i wish for each of you.
Last ntie, Jerry made dinner for dad.. (served it and cleaned up!) while Joan and I went to the movies. The people sitting in front of us (the Recoons, whose daugher in lawMike and Mar know) asked us if we knew that there was an article about nel and the walk in the Sarasota news paper that day.
When we got home we found and read it and dad was pleased. one of our freinds from shul had put it in.
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