Hospice timing with Alzheimer’s .

SBL83 · March 14

Hello,

My husband is 71 with vascular dementia and was also diagnosed with early onset Alzheimer’s about 8 years ago. He also has diabetes and coronary artery disease , along with a couple of other things

He is mostly in stage 6 Alzheimer’s, and has declined a lot in the last 2 months. He can no longer be alone, tries to wander, has delusions and hallucinations etc. All of this has gone on for a while, but has gotten a lot worse. We recently started Seroquel, and that has helped calm him some.

He started having trouble swallowing pills, complaining that they are getting stuck and not going down all the way etc. He is also eating less, and has lost weight. His PCP recommended we get a hospice evaluation, which we did. They approved him for hospice. I’m confused if this is too early to start hospice. I’m curious if anyone can tell me if their love one with Alzheimer’s started swallowing problems with pills, and if so, did it get worse quickly? Would the swallowing problems be a catalyst to involve hospice?

thank you!

SBL83

M1 · March 14

It's not too early at all, most people wait too late. A rule of thumb with other diseases is that hospice indicates probable death within six months, but that is not true for dementia. There are folks on this forum whose loved ones have been on hospice for over a year.

That said, his swallowing difficulties and weight loss are ominous, as these frequently lead to death from aspiration pneumonia. Not trying to scare you, but just trying to be realistic.

SBL83 · March 14

Thank you for your reply and for being realistic. It is helpful,.

tetwoman · March 14

It’s so amazing that you posted this today. My DH was sent to the hospital after only 6 days at MC. He was found to have pneumonia. He has not really eaten much at all for almost 2 weeks. The antibiotics seem to be doing the job on the pneumonia, but his not eating and other withdrawal behaviors indicate to me that he is telling us that he’s had enough. Palliative care consulted with me today and brought up hospice. The problem is that I cannot afford $15000 a month. I cannot keep him at home with hospice services - it’s simply not safe - too many steps, just to get into the house - what would I do if there was a fire!?!

I wonder if anyone else has faced this problem? Once the pneumonia is resolved, there is no medical reason to keep him in the hospital - but MC sent him to the hospital because he wasn’t eating and became listless. It’s a catch 22 dilemma.

BPS · March 14

I have nothing useful to add but I too am dealing with similar issues. My wife is about stage 6 and had a stroke Friday night and now has had a second one. The fist one was from a blockage and the second is a bleeder so they take different treatments. I have an appointment to discuss palliative care tomorrow morning. She is weaker today then she was Yesterday. I was getting close to moving her to memory care before this happened. Now I don't know where I am at.

SBL83 · March 14

I am so sorry to hear that for both of you. You both are in a tough situation. If they are able to return to memory care, I’m pretty positive you can have hospice care in memory care, if that’s what you want. Medicare covers the cost of hospice care, that much I do know..

Good luck to both of you!

harshedbuzz · March 14

@SBL83 Dad's MCF allowed residents to age-in-place. There was an expectation that family would provide additional private-pay aides and/or engage hospice services to help care for the resident. Would this be a possibility?

For medications and swallowing, I would reach out to his pharmacist for help. Sometimes meds are available in liquid form, sometimes they can be crushed into a suspension or given with apple sauce or pudding.

One of my regrets about my dad's death was that I wasn't proactive about hospice. He didn't have many of the classic end-stage symptoms of dementia, but he was silently aspirating and lost considerable weight in the last 6 months. When I pointed out the weight loss to the MCF (he'd been there 6 weeks at this point), they immediately ordered a feeding evaluation, bloodwork and x-ray and brought up hospice. I gave the OK for the hospice evaluation which was scheduled for the next morning; dad didn't make it until morning. His care was good, but I think mom could have benefitted from the support that would have been available to her.

HB

Cecil Jones · March 14

My wife is probably in late stage six and went on hospice the first of February. She has trouble swallowing pills and sometimes trouble with incontinence. I truly didn't think my wife would qualify for hospice but thanks to this site I got her evaluated. I often read how we as caregivers wait to long to get hospice involved, I'm so glad I didn't wait. They come 3 times a week to bathe her. RN comes twice a week. Preacher usually once a week but would come more if I asked. They have been a blessing to me. There is no out of pocket cost for this service or any supplies you may need...it's covered with Medicare.

midge333 · March 14

I don't think I have ever heard a family say: "I think we got hospice (or palliative care) involved too early". Seems like everyone regrets waiting too long before asking for hospice or palliative care evaluation...

SBL83 · March 14

Thank you all so much for your comments and sharing personal experiences. It is all very helpful and valuable information. I wish you all strength and courage as you continue to navigate care for your loved ones. It’s only been a few days, but hospice has been very helpful and kind so far. I think their help will be wonderful .

It’s so hard to know how long this stage will last, and if these swallowing issues signify that the end is closer than I thought . It’s a lot to process.

thanks for all of the advice!

Susan

SBL83 · March 14

https://alzconnected.org/discussion/comment/202120#Comment_202120

Could your husband go back to the MC with hospice services ? I’m amazed that Medicare pays for hospice, and I’ve been told hospice is allowed in memory care, which is wonderful.

tetwoman · March 15

https://alzconnected.org/discussion/comment/202176#Comment_202176

I spoke to MC caseworker today and will hopefully have hospice in MC. It is a big relief. Thanks to all for contributing ideas and sharing.

SBL83 · March 15

https://alzconnected.org/discussion/comment/202201#Comment_202201

That’s great news! My husband’s hospice nurse told me today that she has a lot of patients in Memory Care , and a friend also told me how wonderful and helpful hospice was for her dad while he was in Memory Care. I hope you have the same experience. Good luck and take care of yourself too.

SSHarkey · March 15

My father was put on hospice and maintained on it for 18 months! It was a wonderful support! I am always surprised that people wait too long!

upstateAnn · March 16

My still early styec DH has swallowing problems, but not for dementia. They are a result of past throat radiation. A nurse solved the problem for me. I grind the pills and put them in applesauce.

SBL83 · March 16

https://alzconnected.org/discussion/comment/202293#Comment_202293

I.’m so glad it was wonderful support. They are very nice and helpful. I hear a lot of people say they wish they had not waited.

tetwoman · March 16

update: With the help of palliative care, I have stopped all fluids, blood tests, antibiotics, potassium iv - and dj will be discharged to MC with hospice services coming in. This is a great relief to me and our children. Next uncharted territory will be the next few days or weeks. I know my sweetheart would be so grateful that I am doing this service for him. It all seem surreal.

housefinch · March 16

@tetwoman It must feel like a whirlwind, but you have done a great job advocating for your loved one. You know what he would want and got that. Sending you and your family and your loved one strength and comfort in the days ahead.

midge333 · March 16

@tetwoman, I am so glad you were able to get the resources you need to guide you and your husband through his end of life care. I hope he has a quick and painless death.

AnderK · March 16

I used to volunteer for a wonderful hospice organization in Minnesota. Here are some thoughts about hospice.

People may get better with hospice care, and may go on and off of hospice, and a reputable hospice organization will help you with that.

Hospice is there for you and your loved one.

Part of my volunteer responsibilities was to contact the contact person for the person in hospice to see how things were going. Almost all said that they wished they had done it sooner. And the hospice care ranged from loved ones in mental care, traditional nursing homes, as well as home care.

The range of services that hospice can provide is incredible. From trained volunteers who visit on a regular basis, to chaplain care to the traditional nursing care.

So much more than most think.

Kathy

tetwoman · March 17

https://alzconnected.org/discussion/comment/202368#Comment_202368

Dear Kathy - I think about you often and so wish we were close enough to meet and maintain this connection. It is a sisterhood and brotherhood we never asked for yet here we all are together. You will always be in my thoughts.

Susan

AnderK · March 17

Thank you.

SBL83 · June 13

UPDATE: 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.

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.

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

Thank you!

SBL83

Hospice timing with Alzheimer’s .

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