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
Saturday, July 16, 2011
Saturday, June 25, 2011
Precious Lord
In spite of not being able to get out of bed today, Neil had a sweet day.
We were not looking forward to having a new CNA for the weekend. Delores, our regular CNA is off on Saturday and Sunday.
When Latisha arrived, we were not impressed.. She was late, got lost on the way and had trouble reading a simple book to Neil. Neil decided to take a nap, so that he could be ready for his visit with Jennifer Singer, our wonderful, rabbi; He looks forward to her visits.
I asked Latisha to do some simple household tasks, while I ran some errands. I left soon after greeting Jennifer who chatted with Neil and sang him several favorite Hebrew songs and listened to his dreams (next blog). His spirits were lifted.
Jennifer is our rabbi but has also become our friend. Tomorrow she leaves for a kallah in Calif, but told Neil that since he can no longer come to temple she would like to hold a shabbat service in our bedroom when she returns in July. We were deeply,deeply touched by this offer. How lucky are we to belong to a temple like Kol HaNeshama.
When Jennifer left, Latisha came into the room to see if he needed anything.She commented on the beauty of the music she heard and told Neil she also liked to sing. In fact, shie told us, she was the aunt of the Sarasota runner up for American Idol! Neil mentioned that he enjoys Mahalia Jackson and gospel music especially the song "Precious Lord". (Google it, if you have not heard it).
Latisha a short andstout, rather non descript woman was suddenly transformed before our eyes into an angel as she belted out her version of Mahalia's "Precious Lord".
As I walked in the door, I was transfixed by the music coming from the bedroom. I thought Mahalia was paying us a visit. Latisha sang several other songs as I stood in awe in the doorway and silently wept along with Neil. The tears and the music flowed.
Latisha could not read, .but boy could she sing. I gave her a standing ovation and she favored us with world's biggest smile and ended with "You are the wind bemath my wings". Neil felt like he had a ringside seat today to two wondeful, moving, unexpected concerts.
The room still echos with her voice and Jennifer's spirit.
Thank you Jennifer, thank you Latisha for the the mitzvah of your special gifts.
You made our day!
Cheryl
I left the house at 3 and returned at 4:30. As i came up the walk, I thought i heard Neil listening to his favorite Mahalia Jackson CD playing. As I entered the bedroom, I was taken by surprise to hear Latisha singing Precious Lord, followed by You are My Hero. She sang so beautifully that my eyes welled up with tears and I stood in the doorway and wept, big soulful tears. Latisha could not read,but boy cold she sing.
We were not looking forward to having a new CNA for the weekend. Delores, our regular CNA is off on Saturday and Sunday.
When Latisha arrived, we were not impressed.. She was late, got lost on the way and had trouble reading a simple book to Neil. Neil decided to take a nap, so that he could be ready for his visit with Jennifer Singer, our wonderful, rabbi; He looks forward to her visits.
I asked Latisha to do some simple household tasks, while I ran some errands. I left soon after greeting Jennifer who chatted with Neil and sang him several favorite Hebrew songs and listened to his dreams (next blog). His spirits were lifted.
Jennifer is our rabbi but has also become our friend. Tomorrow she leaves for a kallah in Calif, but told Neil that since he can no longer come to temple she would like to hold a shabbat service in our bedroom when she returns in July. We were deeply,deeply touched by this offer. How lucky are we to belong to a temple like Kol HaNeshama.
When Jennifer left, Latisha came into the room to see if he needed anything.She commented on the beauty of the music she heard and told Neil she also liked to sing. In fact, shie told us, she was the aunt of the Sarasota runner up for American Idol! Neil mentioned that he enjoys Mahalia Jackson and gospel music especially the song "Precious Lord". (Google it, if you have not heard it).
Latisha a short andstout, rather non descript woman was suddenly transformed before our eyes into an angel as she belted out her version of Mahalia's "Precious Lord".
As I walked in the door, I was transfixed by the music coming from the bedroom. I thought Mahalia was paying us a visit. Latisha sang several other songs as I stood in awe in the doorway and silently wept along with Neil. The tears and the music flowed.
Latisha could not read, .but boy could she sing. I gave her a standing ovation and she favored us with world's biggest smile and ended with "You are the wind bemath my wings". Neil felt like he had a ringside seat today to two wondeful, moving, unexpected concerts.
The room still echos with her voice and Jennifer's spirit.
Thank you Jennifer, thank you Latisha for the the mitzvah of your special gifts.
You made our day!
Cheryl
I left the house at 3 and returned at 4:30. As i came up the walk, I thought i heard Neil listening to his favorite Mahalia Jackson CD playing. As I entered the bedroom, I was taken by surprise to hear Latisha singing Precious Lord, followed by You are My Hero. She sang so beautifully that my eyes welled up with tears and I stood in the doorway and wept, big soulful tears. Latisha could not read,but boy cold she sing.
Wednesday, June 22, 2011
Metamorphsis
Kafka woke up one am transformed into an insect.
Neil wakes up each morning also transformed ... Each morning he finds
peices of himself missing, both mentally and physically... nite brings changes; changes we do not want.
Yesterday, he could brush his teeth himself, today he cannot. Yesterday he could balance
the check book, today he cannot . He has a infection in his cathether; Friday he will start
anti biotics; the anti biotics, the nurse tells us may cause mental confusion.
Happy Days, (Beckett), one of neil's favorite plays is about a couple who awake buried in sand up to their ankles. Each day the sand gets higher,but the happy couple say 'Oh well our ankles may be buried, but at least we can still see our knees."As the knees become buried, they say "Oh well at least we can use our arms". Get the pix?
Happy Days is a metaphor for growing older and we are a metaphor for Happy Days.
We are living Happy Days in real time.
A weak heart and an advancing ALS plays havoc with the body and the mind of both the patient and the caregiver. Neil is smart and aware enough to know it is happening. He asks to be released from his body, which now imprisons him.
We have two rabbi's at our Sarasota temple, who are both amazing. Goldie Milgram is our winter rabbi living in Philly and traveling, but calls often. She called him yesterday and spoke to him for an hour. He loves talking to her. They talk and she sings to him.
She counsels him and soothes him.
Reb Jennifer Singer our summer rabbi is one special person.. She is smart, funny, and full of love and great energy. She visited us at the hospice house and has offered to come to our home for visit. Thank you Reb Goldie and Reb Jennifer for your love, wisdom and compassion. You are part of our angel team, as our our kids, grandkids, and freinds.
Our temple family are also part of our angel team. They bake offer to visit, bring food and lend an ear when needed. We are blessed to be members of this scared community.
Delores, our aide takes cares of both of us.. she bathes and dresses neil and is his therapist.
She cleans, cooks, shops, does errands and answers the phone when we are too tired to talk. She knows when I need a nap and encourages me to lie down.
She has just taken him out for breakfast, so i cd get cuaght up with things.
My heart goes out to people everywhere who are dealing with this and other aillments.
My heart goes out to caretakers who watch their loved ones metamorphize/melt away.
My heart goes out to us and to our freinds who love us and watch this process with us.
I wish it were easier for everyone who must deal with illness.
Cheryl
Neil wakes up each morning also transformed ... Each morning he finds
peices of himself missing, both mentally and physically... nite brings changes; changes we do not want.
Yesterday, he could brush his teeth himself, today he cannot. Yesterday he could balance
the check book, today he cannot . He has a infection in his cathether; Friday he will start
anti biotics; the anti biotics, the nurse tells us may cause mental confusion.
Happy Days, (Beckett), one of neil's favorite plays is about a couple who awake buried in sand up to their ankles. Each day the sand gets higher,but the happy couple say 'Oh well our ankles may be buried, but at least we can still see our knees."As the knees become buried, they say "Oh well at least we can use our arms". Get the pix?
Happy Days is a metaphor for growing older and we are a metaphor for Happy Days.
We are living Happy Days in real time.
A weak heart and an advancing ALS plays havoc with the body and the mind of both the patient and the caregiver. Neil is smart and aware enough to know it is happening. He asks to be released from his body, which now imprisons him.
We have two rabbi's at our Sarasota temple, who are both amazing. Goldie Milgram is our winter rabbi living in Philly and traveling, but calls often. She called him yesterday and spoke to him for an hour. He loves talking to her. They talk and she sings to him.
She counsels him and soothes him.
Reb Jennifer Singer our summer rabbi is one special person.. She is smart, funny, and full of love and great energy. She visited us at the hospice house and has offered to come to our home for visit. Thank you Reb Goldie and Reb Jennifer for your love, wisdom and compassion. You are part of our angel team, as our our kids, grandkids, and freinds.
Our temple family are also part of our angel team. They bake offer to visit, bring food and lend an ear when needed. We are blessed to be members of this scared community.
Delores, our aide takes cares of both of us.. she bathes and dresses neil and is his therapist.
She cleans, cooks, shops, does errands and answers the phone when we are too tired to talk. She knows when I need a nap and encourages me to lie down.
She has just taken him out for breakfast, so i cd get cuaght up with things.
My heart goes out to people everywhere who are dealing with this and other aillments.
My heart goes out to caretakers who watch their loved ones metamorphize/melt away.
My heart goes out to us and to our freinds who love us and watch this process with us.
I wish it were easier for everyone who must deal with illness.
Cheryl
Sunday, June 12, 2011
Thoughts from Neil
Thoughts from Neil on June 12, 2011
I feel as if I am being gently embraced and rocked by a huge and loving group of friends and family from Hawaii to Vancouver to NYC and so many places in between. I especially feel the love from my children and my Kol Ha’ Neshama family as I am being slowly and lovingly transported to another place.
My bags are packed with unbelievable memories of the past and recent present, bits and pieces of my persona and psyche and even some of my potentially useful shticks. In the distance I see legions of ancestors
waiting to meet me at the portals with welcoming and outstretched arms to help guide me on the next step of my journey, wherever it may lead.
I feel as if I am being gently embraced and rocked by a huge and loving group of friends and family from Hawaii to Vancouver to NYC and so many places in between. I especially feel the love from my children and my Kol Ha’ Neshama family as I am being slowly and lovingly transported to another place.
My bags are packed with unbelievable memories of the past and recent present, bits and pieces of my persona and psyche and even some of my potentially useful shticks. In the distance I see legions of ancestors
waiting to meet me at the portals with welcoming and outstretched arms to help guide me on the next step of my journey, wherever it may lead.
Wednesday, June 8, 2011
Dorothy was right
Dorothy was right... there is no place like home.. altered as it is with a large, new hoyer, 2 wheel chairs and various oxygen machines etc.
Neil got into the hoyer and we went to breakfast with with Mary, Moe and Delores our CNA.
After 3 days in bed, getting out in his wheel.chair was the equivalent to going to the French Riveria.. Mary said the look on Neil's face made her cry. I stayed home and attempted to gather my wits about me and breathe.
We lucked out with Delores, a kind/capable health care worker.. Neil told the agency to only send us CNA's who are Democrats and without missing a beat, the agency said "Of course, we only hire democrats....... an agency with a sense of humor. We like that, but little did she know we were not kidding.
We are on a high learning curve with the hoyer. We had our first lesson today with Morgan, our hospice nurse, Delores and Moe Lipson and me. We need two people to manage it. Getting into the hoyer is like the game of trust we used to play when u fall backwards into the arms of friends who u hope will catch you. It is an exercise in faith for Neil. He is getting used to it.
Mary and Moe are our guardian angels. She brought dinner last nite and tonite is bringing veal stew with grilled romanine and goat cheese (salmon for me).
Delores shops, cooks, cleans takes care of Neil and makes us take naps and right now, she is organizing our closets while we wait for our gourmet dinner.
I fear that if Neil had it to do over, he wd marry Delores. Between our hospice team, our , the nice emails from everyone and Delores we are continuing to enjoy the ride., bumpy though it may be.
Cheryl
Neil got into the hoyer and we went to breakfast with with Mary, Moe and Delores our CNA.
After 3 days in bed, getting out in his wheel.chair was the equivalent to going to the French Riveria.. Mary said the look on Neil's face made her cry. I stayed home and attempted to gather my wits about me and breathe.
We lucked out with Delores, a kind/capable health care worker.. Neil told the agency to only send us CNA's who are Democrats and without missing a beat, the agency said "Of course, we only hire democrats....... an agency with a sense of humor. We like that, but little did she know we were not kidding.
We are on a high learning curve with the hoyer. We had our first lesson today with Morgan, our hospice nurse, Delores and Moe Lipson and me. We need two people to manage it. Getting into the hoyer is like the game of trust we used to play when u fall backwards into the arms of friends who u hope will catch you. It is an exercise in faith for Neil. He is getting used to it.
Mary and Moe are our guardian angels. She brought dinner last nite and tonite is bringing veal stew with grilled romanine and goat cheese (salmon for me).
Delores shops, cooks, cleans takes care of Neil and makes us take naps and right now, she is organizing our closets while we wait for our gourmet dinner.
I fear that if Neil had it to do over, he wd marry Delores. Between our hospice team, our , the nice emails from everyone and Delores we are continuing to enjoy the ride., bumpy though it may be.
Cheryl
Monday, June 6, 2011
June 6, 2011
If all goes according to plan, we will be back in our condo tomorrow at aprox 3:00 pm.
The ALS symptoms are getting worse. Also Neil has had several heart issues this week. Hospice feels his stymptoms are being "controlled" and we are going home. This is not a long term stay facility. We have been here for 2 weeks.
He is anxious to be home in his own bed and familiar surroundings. We will have help in the house.
He has bad days and worse days lately. The morphine makes him hallucinate, but it is the only thing that helps him when his heart acts up. I have been sleeping on a airbed next to him at the hospice house; that is a comfort to both of us. He is emotional and weepy at times (who wouldn't be?) He has been in bed for over 48 hrs straight. The hospice people here at the facility mishandled the hoyer while gettting him in and hurt him badly; he was in pain for 2 days and now he is afraid to try it again.
The hoyer is the only way he can get into his wheel chair. A new hoyer was delivered to our home today; I will learn how to use it tomorrow. We both hate what is happening, but it is our reality and we are dealing with it as best we can.
Neil feels bad that he has put this burden/worry on his friends and loved ones, but that's Neil. I reassure him that he did not choose to have this disease.
Our friend Terry Haines, whose husband Jack died of ALS, says it is known as the nice guys disease. Small comfort.
Join me in helping to find/fundraise for a cure. Let no one suffer like this.
It will be one of my life's goals.
Cheryl
The ALS symptoms are getting worse. Also Neil has had several heart issues this week. Hospice feels his stymptoms are being "controlled" and we are going home. This is not a long term stay facility. We have been here for 2 weeks.
He is anxious to be home in his own bed and familiar surroundings. We will have help in the house.
He has bad days and worse days lately. The morphine makes him hallucinate, but it is the only thing that helps him when his heart acts up. I have been sleeping on a airbed next to him at the hospice house; that is a comfort to both of us. He is emotional and weepy at times (who wouldn't be?) He has been in bed for over 48 hrs straight. The hospice people here at the facility mishandled the hoyer while gettting him in and hurt him badly; he was in pain for 2 days and now he is afraid to try it again.
The hoyer is the only way he can get into his wheel chair. A new hoyer was delivered to our home today; I will learn how to use it tomorrow. We both hate what is happening, but it is our reality and we are dealing with it as best we can.
Neil feels bad that he has put this burden/worry on his friends and loved ones, but that's Neil. I reassure him that he did not choose to have this disease.
Our friend Terry Haines, whose husband Jack died of ALS, says it is known as the nice guys disease. Small comfort.
Join me in helping to find/fundraise for a cure. Let no one suffer like this.
It will be one of my life's goals.
Cheryl
Friday, June 3, 2011
Club Med Hospice Style
Neil was greeted yesterday morning by two hospice workers who burst into his room
laughing and singing hyms to him. (This is a day the Lord has made, be happy and rejoice in it). They opened the curtains to his spacious room
which then became flooded with light. Neil told them he felt he was at the gates of
paradise. Continuing his day, he got into his hoyer and we went into the
garden, where we sat for 2 hrs enthralled by the landscape... watching the birds, dragonflies, butterflies, cows (yes, there is a cow pasture) . I read to him from his book (Story of a Marriage, Andrew Greer) and for what seemed like the first time in ages we felt at peace, just enjoying the scenery and each other's company.
The glorious morning was completed when the staff brought him breakfast out on the patio. Interrupted only by the doctor stopping by to take his blood pressure and listen to his heart.
Neil said there was no day that he can remember that was nicer. He is so good at appreciating life's simple pleasures. He reminds me to do that too..
Thank you for your pledges and offers to pledge to the Giggle Foundatioin. We will let you know when it is set up. Neil worked on the brochure today and is anxious to start making it happen. Will keep you posted.
Cheryl and Neil
laughing and singing hyms to him. (This is a day the Lord has made, be happy and rejoice in it). They opened the curtains to his spacious room
which then became flooded with light. Neil told them he felt he was at the gates of
paradise. Continuing his day, he got into his hoyer and we went into the
garden, where we sat for 2 hrs enthralled by the landscape... watching the birds, dragonflies, butterflies, cows (yes, there is a cow pasture) . I read to him from his book (Story of a Marriage, Andrew Greer) and for what seemed like the first time in ages we felt at peace, just enjoying the scenery and each other's company.
The glorious morning was completed when the staff brought him breakfast out on the patio. Interrupted only by the doctor stopping by to take his blood pressure and listen to his heart.
Neil said there was no day that he can remember that was nicer. He is so good at appreciating life's simple pleasures. He reminds me to do that too..
Thank you for your pledges and offers to pledge to the Giggle Foundatioin. We will let you know when it is set up. Neil worked on the brochure today and is anxious to start making it happen. Will keep you posted.
Cheryl and Neil
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