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
Monday, August 15, 2011
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
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