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
Saturday, October 29, 2011
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
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