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
Sunday, October 23, 2011
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
Subscribe to:
Posts (Atom)