Random Thoughts on Calories, Hospice, and the Dying Process

Judi57

I talked to the Hospice nurse today about my DH's decreased eating and sleeping more.  He is eating less than 3,000 calories a week.  (When he was younger and doing carpentry work, he could eat that much in a day.) She said it was all part of the dying process.  And he tires so quickly after sitting up in bed for no more than two hours.  He does that twice a day. He seems to be growing bored by his favorite shows.  And though I like Gunsmoke and MASH, I'm glad he's taking a break from them.   He loves to listen to his country classic songs on the television.  

Thankfully, he still knows who I am along with other people.  In fact, when I called EMS for a lift assist about three weeks ago, he called out to one of the helpers by name.  He hadn't seen him in over two years.  Vascular Dementia sure has manifested differently for him as compared to Alzheimers.

Hospice is amazing.  I told the nurse it would be nice to have a bedside table.  And it was at my door the next day.  She comforts me, and the CNAs make him smile as they bathe him.  He has always enjoyed the attention and being pampered.

But still, the reality of it hits me when I realize it is part of the dying process.  I'm using the time we have left together to make good memories, be kind and helpful, and give him a life despite the dementia.  My prayers for us all no matter what stage your LO is in.  

Last Dance

Judi57 wrote:

I talked to the Hospice nurse today about my DH's decreased eating and sleeping more.  He is eating less than 3,000 calories a week.  (When he was younger and doing carpentry work, he could eat that much in a day.) She said it was all part of the dying process.  And he tires so quickly after sitting up in bed for no more than two hours.  He does that twice a day. He seems to be growing bored by his favorite shows.  And though I like Gunsmoke and MASH, I'm glad he's taking a break from them.   He loves to listen to his country classic songs on the television.  

Thankfully, he still knows who I am along with other people.  In fact, when I called EMS for a lift assist about three weeks ago, he called out to one of the helpers by name.  He hadn't seen him in over two years.  Vascular Dementia sure has manifested differently for him as compared to Alzheimers.

Hospice is amazing.  I told the nurse it would be nice to have a bedside table.  And it was at my door the next day.  She comforts me, and the CNAs make him smile as they bathe him.  He has always enjoyed the attention and being pampered.

But still, the reality of it hits me when I realize it is part of the dying process.  I'm using the time we have left together to make good memories, be kind and helpful, and give him a life despite the dementia.  My prayers for us all no matter what stage your LO is in.  

Last Dance

 Judth Wrote                                                                                                                     Vascular Dementia sure has manifested differently for him as compared to Alzheimer’s. But still, the reality of it hits me when I realize it is part of the dying process.  I'm using the time we have left together to make good memories, be kind and helpful, and give him a life despite the dementia.   

Like your husband Linda had Vascular Dementia on a scale from one to 10 I'd say she was A Six or maybe even a Seven to take care of. Linda also liked to watch Gunsmoke, but I had to have her stop watching it because she thought bad people were in the house to hurt us. She was a great Elvis fan and met him in person and even has a picture with him and her together, so I would play Elvis’s movies or music for her all the time that's what really made her happy. Linda stopped eating solid food of any kind on March 14th of 2017 however she would drink smoothies or other drinks that I would make for her, but as the dying process continued, she drank less and less each day she passed away three months later almost to the day on June 16th of 2017. The dying process is hard even though she wasn't eating, and she was sleeping more I still could not bring myself to the fact that I was losing her. I wish I could say that I made good memories in the last three months, but I didn’t It was hard watching her slip away and knowing no matter how hard I tried, how much I cried, or prayed I could not save her, my one and true satisfaction was that we are Christians and believe in heaven and I know that she is there waiting for me.  So make all the good memories that you can and take care of yourself          God's blessings to you Richard

Judi57

Thanks, Richard.  That is my husband's name.   My husband is also around a six or seven to take care of.  He never wandered, used other places as a toilet, or became aggressive.  But he did have others problems like not walking early, forgetting where he is, and being obsessed with different objects at different times.

I know the good memories may be few, but I'll write them down for later.  We, too, are Christians. If anything good can come out of this disease, it is how much closer we have come in our beliefs and to each other.  My prayers have changed from healing to comfort.  And like you, once he is gone I know he will be waiting for me.

You take care, also.

Sligo177

Judi,

What a beautiful way for you to express your deep love for your DH.  Any comfort, favorite music, anything he might like....this is something I'll strive for, when the time comes for me and my DH.  Making good memories.  You are an inspiration.  Prayers for you and him.

Cherjer

Judi...is your husband at home?

Judi57

Sligo.  Thank you for the nice compliment.  At times I don't feel like an inspiration.  Most days I struggled, but I continued knowing it is what I needed and wanted to do.  I cried, questioned, moped, but persevered.

And the ultimate comfort for him is ice cream. He loves it, and I enjoy seeing him eat it. 

Judi57

Cherjer wrote:

Judi...is your husband at home?

Yes, he is.  He is bedridden which just started about two weeks ago.  Until then, I pushed and pulled him around in a sit-to-stand device.  Despite losing his ability to walk and support his weight on his legs, he could still pull himself up onto the medical device.  That development just suddenly happened without any warning.  His decline started then.  

Ed1937

Judi, I'm sorry he is progressing further. Keep playing those classic country songs for him. "I'm using the time we have left together to make good memories, be kind and helpful, and give him a life despite the dementia". I'm glad you are doing that. That will bring you peace in the future.

ghphotog

Judi, so very sad and inspirational at the same time.
Wish I had the right words but thank you for sharing that.

Cherjer

I am so sorry about your DH's decline. Taking care of your H at home is amazing, and I am at the point where I am thinking I can do this at home, too. Going to a board and care would be the same that I am doing at home. My dh is still ambulatory but has some balance issues. He is at late stage 6 I believe. 

My decision will be made after the new year. I will have an in home dr. coming at the end of the month. My care manager has set this up and will be hard to have the conversation with our internist who has helped us along this journey. But I can no longer take my H to appointments so will see how this arrangement works out. 

Judi57

Ed, thank you for you kind words.  The country music does help comfort him.

Judi57

ghphotog.  I'm glad the words were inspirational to you.  When all of this is over for me, I hope to help those in my community find solutions.  When I first started on this journey, I felt so lost.  I don't want other first time caregivers to feel that way.

Judi57

Cherjer wrote:

Taking care of your H at home is amazing, and I am at the point where I am thinking I can do this at home, too. Going to a board and care would be the same that I am doing at home.  

I will have an in home dr. coming at the end of the month. My care manager has set this up and will be hard to have the conversation with our internist who has helped us along this journey. But I can no longer take my H to appointments so will see how this arrangement works out. 

There were times when I thought I couldn't do it at home.  But when I visit care facilities, I've not been impressed.  The fact he was immobile made it a bit easier.  I couldn't see paying money--which we really didn't have--for him to sit in a chair or in bed when he can do that at home.  

It was getting more difficult as the days passed to get him to appointments too. His regular PCP did visit him at home twice a year.  She was always available through mychart and is very responsive.  We were fortunate that his podiatrist visits every two months to trim his toes, since he's diabetic. 

To keep him at home, I did research and searched for help from different agencies.  I applied for every program available.  It never hurt to try.  So, I'm still plugging away at this and will do so for him...for us.  

ImMaggieMae

Judi, you are indeed an inspiration to those of us who plan to keep our spouses at home. Thank you for posting here. Prayers for comfort and to get through one day at a time with as many good memories as possible. You are right about how much closer this disease brings us to each other. Thank you for being here.

Cherjer

Thank you Judi for being so open and honest about caring for your husband at home. I see changes in my husband daily it seems, but I now am more calm with him. We can go for car rides together and short walks but there is no real communication anymore. I plan on having more care for him than the three days I now have...that may help with me keeping him home.

Take care...this is all so hard. I sometimes think at this late stage that my husband does know what is going on but just can't get out from under this terrible disease. 

caberr

My DH is in a facility since July.  He hasn't been able to walk since June.  My intent was to keep him home, but he got very agitated and combative we (our kids and I) decided it best to place him.  He is also on Hospice.  

Lately, I've been thinking I'd like to bring him home.  I visit him every day.  He loves music and we listen all the time. I feel the same, he can sit in a chair or in a bed at home, but I just don't know how to do it. And at this point don't know if I should even try.  Do you have regular help?  I am also wondering if Hospice would come more often if he was home.  

I think what you are doing is wonderful! 

Judi57

caberr wrote:

 I visit him every day.  He loves music and we listen all the time. I feel the same, he can sit in a chair or in a bed at home, but I just don't know how to do it. And at this point don't know if I should even try.  Do you have regular help?  I am also wondering if Hospice would come more often if he was home. 

caberr.   I don't have regular help beyond the CNAs and nurse who comes by each week.  The CNAs are here three days a week and the nurse once.  They are a big help, and on those days the CNAs are here, I don't have to worry about bathing him.   I do have an agency through the Medicaid waiver program who sends aids, but I put them on hold until the first week in January.  Too many visitors tire him.  

I think some people can get a nurse two times a week, but we don't need that yet.  

Another reason I have him home is while he is sleeping, I can get some laundry completed and other things.  If I would visit him each day, that just takes away from my time to work around the house at odd jobs.  

Thank you for the wonderful compliment about "being wonderful."  There are days I don't feel that way, but his smile when I enter his room is probably the best feeling of all.