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.
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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

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

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

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

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

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

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