How to describe the emotions we feel and the ups and downs of each day?
Words are inadequate, but i will try.
We have known love and compassion for sure, but to experience it to the zenith, walk into a hospice house. It is a unique collection of souls. A place of physical and spiritual beauty. Residents, visitors and workers all ready to embracce you, hold your hand and offer words of wisdom to guide on this part of the journey. A journey filled with pain, tears, yearingng, reminiscing, laughter; friends from far and near, family, and the voices of ancestors who appear when you least expect them.
I sleep at the hospice house on a cot next to neil's bed.. When he woke this am, he said he missed the bus.. he got there too late and it left without him. He does not want to live like this..so dependent on others for everything. I talk to the wives of the other patients whose husbands are dying. We share a special bond that only we understand.
I came to the condo to take care of some things and phoned from there. Much to my surprise his voice was happy, excited and he was giggling so hard he cd barely talk.
What happened you might ask?
Before we enetered hospice house we had a hospice home team and a very special nurse, a young woman, with an old soul, Morgan Thomas.. She is 24, but can keep up with Neil's witt and humor and even one up him. They became quick friends and when she came to visit at our home , she sat on the bed, ate ice cream with us and we giggled together as we figured out our next move. She is no longer his nurse now that he entered the hospice facility, but today, on her day off from work, she made the trek to visit him. He was delighted and as I write this she is visiting. I could hear the joy in his voice.
Neil is one of the most creative, generous, compassionate people i have ever met .More on that in my next post.
cheryl
Monday, May 30, 2011
Sunday, May 29, 2011
May 29
Dear Friends,
We are both soul weary. This is a very difficult time for u and our family and for all who love us.
Marla left this am, but my sister and her family are here. Such a gift. They bring love, and laughter and good conversation.
Neil has been very chatty. Yesterday after being in bed for 4 days the nurses used the hoyer to put him
In his wheelchair and he was able to take a spin around the grounds , after which joel and marla and Brenda and her family , neil and I all had dinner together in the dinning room. It was such a treat for neil to be out of bed. We will try to get him out every day. He was going stir crazy.. He is still amazing in so many ways.
He is very aware of what is happening to him. Each day he grows weaker and can do less. How does one live watching pieces of him/herself disappear each day?
Hospice is wonderful. All of the workers kind/compassionate/loving. He has charmed all of the nurses, no surprise there.
They will evaluate him this week and tell us where they think we shd go from here.
cheryl
We are both soul weary. This is a very difficult time for u and our family and for all who love us.
Marla left this am, but my sister and her family are here. Such a gift. They bring love, and laughter and good conversation.
Neil has been very chatty. Yesterday after being in bed for 4 days the nurses used the hoyer to put him
In his wheelchair and he was able to take a spin around the grounds , after which joel and marla and Brenda and her family , neil and I all had dinner together in the dinning room. It was such a treat for neil to be out of bed. We will try to get him out every day. He was going stir crazy.. He is still amazing in so many ways.
He is very aware of what is happening to him. Each day he grows weaker and can do less. How does one live watching pieces of him/herself disappear each day?
Hospice is wonderful. All of the workers kind/compassionate/loving. He has charmed all of the nurses, no surprise there.
They will evaluate him this week and tell us where they think we shd go from here.
cheryl
Friday, May 27, 2011
May 27
Neil very low/emotional today. Our kids are here, my sister and her hubby and her kids arrive tomorrow. It will be quiet when everyone leaves.
We had a busy morning. The chaplin came followed by the grief counselor, followed by the social worker, followed by the therapy dog.
Then someone came to turn off Neil's debfrillator... very traumatic.
It has served him well. He is totally paralyized. he cannot move his body at all.
So hard for someone who has been such an independent man to be so dependent.
He hates being so dependent and feels safest and most comfortable in bed.
Today he is alert and seems to be enjoying all of the company/attention.
Saying goodby to people is always heart wrenching.
It is very beautiful here at the Ellenton Hospice House.. we have a large room with comfy chairs and sofas and a screened lani. We have pond view and there is a cow pasture. There are beautiful gardens with an orchid house and an herb garden.
The workers here are all so nice/kind/attentive. They will reasses him on Tues or Wed.
cheryl
We had a busy morning. The chaplin came followed by the grief counselor, followed by the social worker, followed by the therapy dog.
Then someone came to turn off Neil's debfrillator... very traumatic.
It has served him well. He is totally paralyized. he cannot move his body at all.
So hard for someone who has been such an independent man to be so dependent.
He hates being so dependent and feels safest and most comfortable in bed.
Today he is alert and seems to be enjoying all of the company/attention.
Saying goodby to people is always heart wrenching.
It is very beautiful here at the Ellenton Hospice House.. we have a large room with comfy chairs and sofas and a screened lani. We have pond view and there is a cow pasture. There are beautiful gardens with an orchid house and an herb garden.
The workers here are all so nice/kind/attentive. They will reasses him on Tues or Wed.
cheryl
Thursday, May 26, 2011
update from hospice house
Dear Friends,
Neil was moved to hospice house yesterday. It is a lovely place with wonderful people.
Our kids are here now along with ron rabin. they are laughing and talking and having fun.
Neil is at his best when whe is entertaining and around people.. it is his vitiman B12.
I had a talk with the hospice nurse today. and met the social worker and the dr.
Neil had hit a low point yesterday morning, but after a visit from molly ballow, linda and ron. and rala and russell
he improved dramatically, by the time we got to hospice i was feeling guilty for briinging him here.
We are so grateful for having the most unbelievable friends.. we do not know how to thank u.
There are no words.
The dr here said she will evaluate neil over the next few days and tell us whether he shd stay here or
go whether we shd make other arrangements. that will take 4-5 days. I will need a plan b.
Neil and I are both devasted by the fact that he can no longer get himself into the w.chair.
He has been in bed for several days now, he cannot move his body. He can still feed himself, but cannot
move his legs or his body.. Hospcie ssid they wd try tomorrow to use a hoyer to put hiim in a w.chair and
take him out in the garden.
He is weak and frail and sometimes makes sense and sometimes not.
He is sleeping more and more during the day.. but still lights up when he has company, of which we are fortunate enough to have no shortage.
cheryl
Neil was moved to hospice house yesterday. It is a lovely place with wonderful people.
Our kids are here now along with ron rabin. they are laughing and talking and having fun.
Neil is at his best when whe is entertaining and around people.. it is his vitiman B12.
I had a talk with the hospice nurse today. and met the social worker and the dr.
Neil had hit a low point yesterday morning, but after a visit from molly ballow, linda and ron. and rala and russell
he improved dramatically, by the time we got to hospice i was feeling guilty for briinging him here.
We are so grateful for having the most unbelievable friends.. we do not know how to thank u.
There are no words.
The dr here said she will evaluate neil over the next few days and tell us whether he shd stay here or
go whether we shd make other arrangements. that will take 4-5 days. I will need a plan b.
Neil and I are both devasted by the fact that he can no longer get himself into the w.chair.
He has been in bed for several days now, he cannot move his body. He can still feed himself, but cannot
move his legs or his body.. Hospcie ssid they wd try tomorrow to use a hoyer to put hiim in a w.chair and
take him out in the garden.
He is weak and frail and sometimes makes sense and sometimes not.
He is sleeping more and more during the day.. but still lights up when he has company, of which we are fortunate enough to have no shortage.
cheryl
Wednesday, May 18, 2011
May 18
Health wise it gets a bit worse each day. Neil can do less and less. He hates being so dependent, who wouldn't? His voice is getting weaker and he is having a harder time getting himself out of bed.
Joel is here and that is a big help, but I know it is hard for him to see us this way.
I dread the saying of goodbyes. It is heart wrenching.
Neil's friend Ron is also here for 10 days. He is very tender and kind. He is Neil's guy friend, but also my guy friend. His daughter Nora will be here on Saturday and we also look forward to seeing her smiling face.
Neil says he is sitting shiva for himself. People drop in or email lovely eulogies.
It is shiva and we have been in morning for almost a year now. He sometimes compares it to the old show "This Is Your Life".
I think of Tinkerbell who said something like "Help! My light is fading."
Neil's light is fading and I cannot help, only keep him comfortable and watch.
Wish I had good and happy things to write.. The good things are the wonderful guests who come to visit and share their energy, love and time. These are the gifts we gratefully receive.
Cheryl
Health wise it gets a bit worse each day. Neil can do less and less. He hates being so dependent, who wouldn't? His voice is getting weaker and he is having a harder time getting himself out of bed.
Joel is here and that is a big help, but I know it is hard for him to see us this way.
I dread the saying of goodbyes. It is heart wrenching.
Neil's friend Ron is also here for 10 days. He is very tender and kind. He is Neil's guy friend, but also my guy friend. His daughter Nora will be here on Saturday and we also look forward to seeing her smiling face.
Neil says he is sitting shiva for himself. People drop in or email lovely eulogies.
It is shiva and we have been in morning for almost a year now. He sometimes compares it to the old show "This Is Your Life".
I think of Tinkerbell who said something like "Help! My light is fading."
Neil's light is fading and I cannot help, only keep him comfortable and watch.
Wish I had good and happy things to write.. The good things are the wonderful guests who come to visit and share their energy, love and time. These are the gifts we gratefully receive.
Cheryl
Tuesday, May 17, 2011
May 13 Walking the High Wire
A Beautiful Day. May 13, 2011
Transitions… we are always in transition.. Death being the ultimate transition
and one that we spend much time avoiding.
We are looking this transition in the face. No avoiding it.
We live with it every day.
Moved along and cradled by love from expected and unexpected sources.
Watching Neil accept and deal with his disease and take it on the chin.
I complain more than he does. He is a pragmatist, a realist. So wise,
so mentally healthy. Always my teacher.
Humor is his constant companion as he makes this journey.
I try to imagine living without him and am filled with a feeling of emptiness
He is my friend, my cheerleader, my life partner, my everything.
Dick and Andre arrived yesterday. Our eyes filled with tears seeing them.
We have shared so many, simchas, good times together.
We met for breakfast and then spent the afternoon at the Bayfront,
the town square. We sat on a bench under the banyan trees watching
the world go by. A segway tour stopped in front of our bench
giving tourists a lecture on the trees; we become part of the tour.
Behind us a young man ties a rope to two tress
30 feet apart and begins performing a high wire balancing act. We watch in awe
as he practices his stunts. He takes a break and comes over to talk to us.
He is not with the circus as we first thought. He is a young business man,
who has moved here from Calif. He asks us who we are and where
we are from. Without missing a beat, Neil tells him that he is dying
and that his friends have come to say goodbye.
To his credit the young man takes it all in and before leaving says to Neil,
“I hope you enjoy the rest of your life”.
And that is exactly what we try to do.
Transitions… we are always in transition.. Death being the ultimate transition
and one that we spend much time avoiding.
We are looking this transition in the face. No avoiding it.
We live with it every day.
Moved along and cradled by love from expected and unexpected sources.
Watching Neil accept and deal with his disease and take it on the chin.
I complain more than he does. He is a pragmatist, a realist. So wise,
so mentally healthy. Always my teacher.
Humor is his constant companion as he makes this journey.
I try to imagine living without him and am filled with a feeling of emptiness
He is my friend, my cheerleader, my life partner, my everything.
Dick and Andre arrived yesterday. Our eyes filled with tears seeing them.
We have shared so many, simchas, good times together.
We met for breakfast and then spent the afternoon at the Bayfront,
the town square. We sat on a bench under the banyan trees watching
the world go by. A segway tour stopped in front of our bench
giving tourists a lecture on the trees; we become part of the tour.
Behind us a young man ties a rope to two tress
30 feet apart and begins performing a high wire balancing act. We watch in awe
as he practices his stunts. He takes a break and comes over to talk to us.
He is not with the circus as we first thought. He is a young business man,
who has moved here from Calif. He asks us who we are and where
we are from. Without missing a beat, Neil tells him that he is dying
and that his friends have come to say goodbye.
To his credit the young man takes it all in and before leaving says to Neil,
“I hope you enjoy the rest of your life”.
And that is exactly what we try to do.
Monday, May 2, 2011
day to day
Neil maintains an amazingly good attitude considering he spends most of his day in bed. He does not sleep,but it is where he feels most comfortable.
Today, after the person who bathed him left, the massuse came. A tender, lovely,knowledgable woman (as most hospcie people are).
This was her 2nd visit; she told him that after her first visit, she thought about him all day. She said sees a lot of people, but few with as many things wrong with them as Neil , and few with as good an attitude and as big a smile has he has.. He just charms the pants off of all of the hospice workers. His spirit rises above his illness..
How wish I could infuse him with energy/health. I keep looking for a magic pill that will make this all go away. I sometimes mutter to myself.. "God, please help us, and then i realize, she already has.. We have the gift of hospice and JFS and wonderful friends and family.
We have enjoyed Joan and Jerry who will be back on l Thurs. We have had long talks about living and dying and loving.. No holes barred. We are as honest with each other as anyone could possibly be.
Joan Accurso subcribes to something called heart quotes. It is a service that sends her wonderful quotes on email eveyday... Check it out. the quotes are little gems.
Mary and Moe (aka/ fred and ethel mertz) just stopped in. They always bring us smiles and good cheer. They are leaving next Tues for 3 wks. I can see the worry and concern/love on their sweet faces.
As always we feel surrounded by a warm cozy blanket of love . I don't know how people who do not have this kind of support survive..mabye they don't.
Neil is farklempt and grateful as am I.
Hope the day is good for all of you.
We look forward to our next round of guests.
Namaste.
Today, after the person who bathed him left, the massuse came. A tender, lovely,knowledgable woman (as most hospcie people are).
This was her 2nd visit; she told him that after her first visit, she thought about him all day. She said sees a lot of people, but few with as many things wrong with them as Neil , and few with as good an attitude and as big a smile has he has.. He just charms the pants off of all of the hospice workers. His spirit rises above his illness..
How wish I could infuse him with energy/health. I keep looking for a magic pill that will make this all go away. I sometimes mutter to myself.. "God, please help us, and then i realize, she already has.. We have the gift of hospice and JFS and wonderful friends and family.
We have enjoyed Joan and Jerry who will be back on l Thurs. We have had long talks about living and dying and loving.. No holes barred. We are as honest with each other as anyone could possibly be.
Joan Accurso subcribes to something called heart quotes. It is a service that sends her wonderful quotes on email eveyday... Check it out. the quotes are little gems.
Mary and Moe (aka/ fred and ethel mertz) just stopped in. They always bring us smiles and good cheer. They are leaving next Tues for 3 wks. I can see the worry and concern/love on their sweet faces.
As always we feel surrounded by a warm cozy blanket of love . I don't know how people who do not have this kind of support survive..mabye they don't.
Neil is farklempt and grateful as am I.
Hope the day is good for all of you.
We look forward to our next round of guests.
Namaste.
Sunday, May 1, 2011
Visitors from far and wide
We have had an unbelievably busy/full few days starting with thurs.
Joel and Ellie annd the Accuros were here at the same time on
thrus.mary and moe joined us and we had one big dinner party.
The weiss's left on friday and the Accuro's are staying a wk with a few side trips to visit friends in Naples.
Everyone is so tender and loving .. they just want to help. People come over with soup, cookies, homemade candy etc.
Yesterday we took the Accurso's to the Farmers Mkt (which is always fun) and then we went to a special BarBQ restaurant that dad/neil has been wanting to try..an off beat kind of place owned by a jewish woman who loves to BBQ.
We were able to walk there from the Farmers Mkt.. Unfortunately, dad is loosing his taste for food. He ordres and then cannot eat it. I don't know if if is his taste buds, his stomach or just part of the slowing down process.. He does love and is able to eat, Wendy's Frosty's..so I get him one everyday.
He manages to stay chipper and when Jerry gets weepy and tells dad how much he loves him.. dad tells Jerry to "Buck Up" and pull yourself together.
He tells Jerry that he has had a WONDERFUL LIFE, filled with a job he loved, friends and family he adores.. he has no regrets; from where i sit he is still living life as fully as he possibly can. I think dad is amazed at his populariy, but takes it in stride.. Guess i really picked a good one. All of the company makes my head spin,but it is also a wondreful distraction to both of us.
I remember at Joel and Deb's wedding, the rabbi asked Joel how he wd like to see himself in 40 yrs and the rabbi said that Joel's reply was "I wd like to be rich with love." And that is what i we have and what i wish for each of you.
Last ntie, Jerry made dinner for dad.. (served it and cleaned up!) while Joan and I went to the movies. The people sitting in front of us (the Recoons, whose daugher in lawMike and Mar know) asked us if we knew that there was an article about nel and the walk in the Sarasota news paper that day.
When we got home we found and read it and dad was pleased. one of our freinds from shul had put it in.
Joel and Ellie annd the Accuros were here at the same time on
thrus.mary and moe joined us and we had one big dinner party.
The weiss's left on friday and the Accuro's are staying a wk with a few side trips to visit friends in Naples.
Everyone is so tender and loving .. they just want to help. People come over with soup, cookies, homemade candy etc.
Yesterday we took the Accurso's to the Farmers Mkt (which is always fun) and then we went to a special BarBQ restaurant that dad/neil has been wanting to try..an off beat kind of place owned by a jewish woman who loves to BBQ.
We were able to walk there from the Farmers Mkt.. Unfortunately, dad is loosing his taste for food. He ordres and then cannot eat it. I don't know if if is his taste buds, his stomach or just part of the slowing down process.. He does love and is able to eat, Wendy's Frosty's..so I get him one everyday.
He manages to stay chipper and when Jerry gets weepy and tells dad how much he loves him.. dad tells Jerry to "Buck Up" and pull yourself together.
He tells Jerry that he has had a WONDERFUL LIFE, filled with a job he loved, friends and family he adores.. he has no regrets; from where i sit he is still living life as fully as he possibly can. I think dad is amazed at his populariy, but takes it in stride.. Guess i really picked a good one. All of the company makes my head spin,but it is also a wondreful distraction to both of us.
I remember at Joel and Deb's wedding, the rabbi asked Joel how he wd like to see himself in 40 yrs and the rabbi said that Joel's reply was "I wd like to be rich with love." And that is what i we have and what i wish for each of you.
Last ntie, Jerry made dinner for dad.. (served it and cleaned up!) while Joan and I went to the movies. The people sitting in front of us (the Recoons, whose daugher in lawMike and Mar know) asked us if we knew that there was an article about nel and the walk in the Sarasota news paper that day.
When we got home we found and read it and dad was pleased. one of our freinds from shul had put it in.
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