Ups and downs in late stage Alzheimers and Hospice
hello,
My husband is 71 with late stage Alzheimers and vascular dementia, diabetes etc.. He has been in hospice care since March 8. Hospice was recommended by his PCP due to difficulty walking, incontinence, trouble swallowing pills, weight loss etc.
Hospice gave him 6 months in March. Some days I think they are correct, and some days I do not. I know there is no way to accurately predict. He just had what we think was a bad bladder infection. We had to go to the ED because he had a lot of heavy bleeding and blood clots. I sort of think hospice would have preferred I just give him morphine and hope for the best, but no way I was doing that. He needed medical care.
This end stage is a confusing roller coaster. He’s incontinent, yet suddenly is wanting to get up and use the restroom a couple of times a day, yet doesn’t really know what to do when he’s in there. His depends briefs are still soaked, but for some reason, he’s feeling the desire to go into the restroom. It’s hard to stop him, and he’s a huge fall risk every time he gets up Hospice wants him bed bound because of this.
Despite us discontinuing many of his meds, at hospice’s suggestion , and because he was having trouble swallowing , there are a couple of pills we have to still try to give. He will still tell me they get stuck a lot, but sometimes they seem to go down ok. This makes me worry I shouldn’t have taken him off all of the other meds. Maybe he would feel better if he was still on all of his regular meds. The people from hospice are nice and supportive and caring, but is has always bothered me, how much hospice pushes caregivers giving pain meds. It puts the spouse, family members etc in a tough position. Lots of what if’s . I don’t want to live with the guilt that I hastened his death by agreeing to withdraw certain meds and give others.
This is an emotional roller coaster. The bad days, when I look at his shrinking body ( I worry he has Cachexia ) , I feel the end could be somewhat close. When he has a better day, then I think I’m wrong, and shouldn’t have stopped some meds etc.
If you have read all of this, I thank you!. Sorry it’s so long. If you have any advice or thoughts from your experiences , I would love to hear it. Thank you, and good luck to everyone going through this!
SBL83
Comments
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I apologize in advance for my bluntness. I am sorry for your situation. It sounds as if you are struggling with the fact that he is terminal. From what you describe, he is nearing the end. Ultimately, it comes down to what your goals are. Living as long as possible versus a comfortable death. Your DH will die from something. Urinary tract infection. Aspiration pneumonia. Stroke. Heart attack. How many things do you want him to suffer through before you let him go? What would your DH want done at this point? If roles were reversed, what would you want done for you? The hospice team is focused on his comfort. They are not focused on helping him live as long as possible. None of this is easy but all of us (caregiving spouses) will cross this bridge.
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I agree with the above, but I know it's hard to get in that mindset. From what you say, he almost certainly is going to die soon no matter what you do. You say you want him to feel better: that is correct, comfort is the only goal that matters now. The only question that matters is whether he is comfortable or not. If he is—then fine. If he's not, what can make him more comfortable? Pain and fever medications help give comfort in these last days, that's the reason behind their use.
I'm sorry it's such a struggle. Many have recommended the book "hard choices for loving people" as a good read in this situation.
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I can't add much that hasn't already been said, except to remind that a goal of hospice is to make him as comfortable as possible. If he is having the (common) difficulty of swallowing pills, I'd suggest speaking with the hospice team to get them via oral liquid or suppositories.
My spouse entered memory care and hospice this week, so I can understand the anxiety and mixed emotions as I'm experiencing them, too. I wish you peace.
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I’m sorry you are in this difficult situation. We went through this not long ago with our dad. The pain meds given do not hasten a persons death, but they do help the person remain comfortable. My dad was terminal. Once it became difficult (and scary) for him to swallow, all his meds were stopped. They weren’t going to stop the inevitable. My mom struggled with the pain meds in the beginning, but the wonderful hospice nurses explained to her it was only for comfort and would not hasten his death.
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How do we let someone die. It is not what we want to do.
If you are conflicted about the meds please consult your husbands Dr. Perhaps Pallative care could be considered.
Now regarding the swallowing difficulty…consult your pharmacist. There may be a liquid form or the pills may be an option. The pharmacist will be the one to advise.
All of the being said, this is a harder than hard time for you. We understand…
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Thank you for your honest reply. I appreciate it. It’s helpful. I do want him as comfortable as possible, I just struggle with stopping some of his meds, as I don’t want that to add to his cause of death. I also just struggle with being sure that they are right that he is dying when some days he doesn’t seem like he is. I’m thrilled for the good or better days, but they can give false hope. Thank you for listening.
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Thank you for your helpful reply. I will look into that book. Thank you!
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Thank you for your helpful reply. So sorry about your spouse. I know that must be very difficult . Take care of yourself!
Sending Prayers
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trottingalong:
Thank you for your reply. I’m so sorry about your dad. I know that’s hard. I’m glad hospice brought comfort and understanding. They came today, and they said similar things. They have been telling me this, and kept saying today that he is dying and not going to get better. He’s not actively dying yet, but he is declining and headed toward transitioning. The ups and downs and good days and bad days make it hard to always believe they are right that he has weeks to months at most left, but could be sooner. When your dad had trouble swallowing, was it something that gradually or quickly got worse?Thank you,
SBL83
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Thank you for your kind reply. Some of his meds don’t come in liquid, and any efforts to crush them and put in pudding etc have not worked. We’ve also tried crushing and mixing in water with a syringe , but he fights them and hates the taste and doesn’t want them. I’m still giving insulin, but he is really starting to hate it, and seems terrified and afraid of the needle all of a sudden. I feel bad continuing, but a brittle diabetic without insulin will suffer in many ways and feel physically awful. Hospice and his pcp both feel some of the meds don’t matter anymore, and I guess it’s just hard to stop them, even though they are right.
Thank you and take care.
SBL83
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Some meds are for long term health goals, e.g. blood pressure control and lowering cholesterol, and simply do not matter in the short term. If the medication does not provide comfort, it really isn't needed anymore. Insulin is a tough one because diabetcs do feel awful with a high blood sugar. If he is a type 2 diabetic, his need for insulin may gradually decline because he is eating less and losing weight.
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dad was slowly finding it more difficult to swallow and he was loosing his appetite. The swallowing came on slowly, but reached the point where the pills scared him. He was losing weight because food wasn’t appealing to him. He also had some very good days here and there, and then those days just stopped and the progression quickened. I remember my MIL with dementia. We had hospice in and all of a sudden she was doing great and we all thought, what the heck and considered removing hospice. But, again, that all stopped and she quickly declined. Every individual is different, so enjoy those good days and take it one day at a time. We are all thinking of you.
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Thank you so much for sharing those experiences. That is very familiar sounding to what is going on here, and it is helpful to hear from someone who witnessed the same. I’m sorry about your dad and MIL. I’m sure that was very hard. It’s a cruel disease, but I remain thankful for the good days we have had since diagnosis 8 years ago, and for the ones we may still have ahead here and there.
Thank you and take care!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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