Hospice and end stage Alzheimer’s

SBL83 · June 13

UPDATE and RECAP: My husband with Alzheimer’s, diabetes, etc started hospice care March 8th, 2024. He is 71, and was diagnosed with MCI 8 years ago, which quickly progressed to an Alzheimer’s diagnosis through a spinal tap done to check for biomarkers. I am 62.

Anyways, hospice gave him 6 moths give or take when he was admitted in March. Hospice has been wonderful, and they still feel he is “dying”, just not actively dying yet.

One of the things that caused him to be placed in hospice was difficulty swallowing big pills and certain foods. Those things have been eliminated, and he no longer takes most meds, except small pills and insulin.

We have had a couple of bad experiences (bad, heavy bleeding from a UTI or something else…CT showed bladder wall thickening etc), possible TIA, and some chest pains. He seems pretty stable right now, though he can do none of his ADLs, he’s incontinent, can’t walk etc.

I’m so thankful he is still here, but this is an emotional roller coaster. I’m torn between do we continue as if he is dying, or do I try and get him up and out (via wheelchair )? Hospice says he needs to be bed bound, and of course we worry about falls etc. He can not walk and is a huge fall risk.

I’m blessed that I can still take care of him at home, and I hope to continue to until the end. I’m tired and exhausted, but again, glad he can be home. I’m a teacher and have been on leave since January, when this big decline happened, but I need to tell them soon if I’m returning in the fall. If he’s alive, I will not return, because I hope to still be caring for him at home.

I’m just so confused on if this is “ the end”. He can talk, but mostly talks to just me, but will talk some to others. He can eat, but not just anything, and he has lost a lot of weight. I often wonder what others loved ones were like in those last few months of Hospice care for Alzheimer’s or another form of dementia. Sometimes I think, well, he’s swallowing a little better, should we restart the big pills we discontinued? Obviously I realize that he’s probably swallowing better because we removed the choking triggers.

I think I have in my head more of the picture of heavily sedated cancer patients in hospice because that has been my experience with people in hospice that I’ve known.

It’s hard to keep thinking he’s dying when he can still talk some and eat some. I know this doesn’t mean he’s not dying, but the good ( better, more alert ) days make me question if he’s as bad off as they say he is.

If anyone has something to contribute from your experiences, I would appreciate it,

Thank you!

SBL83

Battlebuddie · June 13

So you can be on Hospice for a while. My husband was on for two years. There is a set of things that will happen as he gets to the end . He will sleep more and more , till he is sleeping almost round the clock. He will loose A LOT of weight. Because they say the first thing to begin shutting down is the digestive system. Even if he is eating well, the food is just basically passing through them , without real benefit , and they get thinner and thinner. It’s like the brain forgets what it’s supposed to do with the food. It’s called Cachexia .
Everybody is different , and your husband has diabeties , so I’m not sure how that impacts things. It’s so hard to say where people are at, and Hospice doesn’t like to predict. But I would watch his digestion and sleeping for indications of where he is on the Hospice time line.
People don’t get better. I wouldn’t start him back on big pills or start taking him on wheelchair trips. Usually once they are bedridden that is all they can handle. At least that was my experience

Rick4407 · June 14

Hello SBL83. I've been in stage 8 for about 14 months. My DW also stayed at home in my care through though the end. Hospice was involved for the last month or so. The last two of weeks she was pretty sedentary. No conversation but she could answer questions or respond. Eating was very limited, not much. Most of her time was watching animal videos on TV. The last couple of days I knew it was the end and called her children to be with her. What meds she got were crushed in pudding or applesauce. The last 2 or 3 days when she seemed to be slightly agitated so we had hospice morphine liquid to put in her cheek. She died quite peacefully with me and her children beside her. Her care for those 7 years is one of my greatest pleasures of my life. I have no guidance for your employment question. Everyone is different, follow you heart. Rick

fmb · June 14

Possible death within six months is the Medicare criteria for hospice care but is not an accurate indicator of when the person will die. My DH has been in hospice care for 6-1/2 mos. He has a lot of the same characteristics as your DH. Although he gave me quite a scare two weeks ago (serious UTI), his very experienced hospice nurse says he is not actively dying yet. His care is gauged to meet his needs on his bad days. The good days are celebrated as a gift. It is indeed an emotional rollercoaster.

I would not start the meds again. As with food, with end of life Cachexia, medications that have to be digested are not absorbed well by the body. When DH entered hospice care, we discontinued all meds/supplements except those aimed at providing comfort care by reducing very uncomfortable symptoms of his co-morbidities or infections. He has Dysphagia and cannot swallow solids at all, so all pills are crushed and given in applesauce or pudding, and he eats pureed food. He has lost a great deal of weight and is very weak. He still is somewhat alert and talks a little on a good day. He is not bedbound yet, but requires a Hoyer lift to transfer him from bed to a Broda chair. I wouldn't start getting your DH out of bed at this point due to his high fall risk.

It is very difficult to keep your life on hold indefinitely, not knowing when your loved one will die. Even if he were to die soon, you will have a great deal to process both emotionally and in terms of paperwork and arrangements, especially if you are the executrix of his will. You may want to consider continued leave for this semester and possibly returning to teaching the next semester. Returning to teaching is a decision only you can make.

Everyone's experience is different, but I hope some of the above helps.

SBL83 · June 14

https://alzconnected.org/discussion/comment/212707#Comment_212707

Thank you so much for your reply. It is very helpful. I’m so sorry for your loss. I feel like he definitely has Cachexia. He’s eating, but still seems to be losing so much weight, and his body appears to be wasting away. The hospice nurse told me yesterday to let him eat what he’s able to swallow and what sounds good to him and not focus so much on nutrition because his body isn’t absorbing the nutrients anyway. This is so hard to watch, but I am so thankful and grateful to be able to keep him at home, and I hope that continues til the end.
Thank you for your help,

SBL 83

SBL83 · June 14

https://alzconnected.org/discussion/comment/212717#Comment_212717

Thank you so much for your reply. I’m so sorry for your loss. I’m sure that’s so hard. I’m so glad your wife was able to stay home. That is my goal, and some days when I feel like I wish there was more I could do for him, I take comfort in the fact that at least I can have him at home, and that that is comfortable to him I know. He watches or listens to tv in his hospital bed here at home, and I keep him as comfortable as I can. I’m thankful that I can be with him, and have not had to hire caregivers. I’m tired and exhausted, but it’s worth it .

Thank you for the helpful info.

Take Care,

SBL83

SBL83 · June 14

Thank you so much for your reply. Your husband is lucky to have you. I appreciate your good advice. I agree about celebrating the good days. I’m trying to realize and process that those good days don’t change the trajectory or what stage he is in etc. That’s where things get tricky sometimes for me. Some days I feel like the nd is getting closer, then there will be a good day or so, and I think maybe hospice is wrong in their predictions. It’s helpful to hear that others experience these days too. The emotional roller coaster is real, and I’m trying to do what’s best, and hope that I won’t look back too much , with regret , after he is gone and wish I could have done this or that better for him. Good luck to you and your husband, and again, thank you for your helpful advice.

SBL83

Babz0226 · June 14

Thank-you to all for this information. I want to keep my husband home with me and hope I can do it,any and all info is greatly appreciated I'm learning so much about hospice and caring for DH at home if I can do it.

Always so helpful

Thank you.

SBL83 · June 15

https://alzconnected.org/discussion/comment/212746#Comment_212746

Hello,

I too have learned so much from other people on this website, and I am always so grateful that people are willing to help and share info.

Hospice has been very helpful so far. My husband’s pcp recommended we have a hospice evaluation in March once the swallowing problems with certain pills and foods started. He was approved and they felt like he had 6 months or less to live at that at that time, but also explained that some Alzheimer’s patients are in hospice for longer than patients with some other illnesses. Hospice covers many meds ( through Medicare), incontinence supplies, and a whole host of other medical supplies. They have provided a hospital bed and other medical equipment, and they are very quick to get what the patient needs. It has also allowed me to not have to take him to so many doctor’s apts. It is very hard for him to leave the house now. Having the nurse come by and check on him and give me updates and run things past the hospice doctor is helpful too. They have many services to offer. I’m not sure how much time he has left, but I hope and pray, with the help of hospice, I can keep at home until the end. I wish you the best of luck with your husband.

SBL83

Babz0226 · June 15

Thank-you for all the thoughts and caring.

Hospice and end stage Alzheimer’s

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