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Me again… just when you think it’s ok to go back into the water! Don’t mean to be flip just trying to get through this without tears. 92 yr.old LBD husband back home from the hospital. CHF pericardium procedure with blood in fluid. No cancer, no virus..sent home and has quickly declined. Refusing to eat or drink ..lots of mumbling and saying I don’t feel good, doesn’t want to get out of bed..2 days before in the hospital he presented pleasant and agreeable to Dr.and nurses.
I am beyond confused, annoyed, and uncertain about what to do and how to help him..
I can be very firm with him and get some results to eating and drinking… no where near a normal amount for him .. no effort on his own to help with anything that involves physical effort..
I know each time he has had to do things that require change of routine or environment it takes something out of him he never regains his strength…
Question, am I being played by him or could he be nearing the end?
He is very passive aggressive and after 56 yrs of marriage I’ve learned his ways of getting his way …where do I find the answers?
I have been isolated with him for nearly 2 yrs.. first because we always isolated for the flu and then covid started ..
If this is the dementia it’s a thousand times worse than what I have already experienced in the last 5 years..He has a mind set that he “can’t” eat, drink, talk, breathe… even though he has never thrown up and can find his normal voice when pushed to use it..very sad ..breathing and oxygen is good when breathing through his mouth…
The CHF is new and he was sent home without any directions or meds? On how to care for him…
Thanks for letting me be part of your group..everyone has always been kind and helpful..
I’m scared … sad …confused… and feel pressured to make a decision on his care ..ideally he would stay home and go peacefully in his sleep… not sure anymore about placing him in some type of care..Anything you can share from your experience and wisdom will be greatly appreciated..

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You have a very old man here with serious physical issues and quite obviously some dementia. Nothing you do or say is going to make this situation better. If you want to be his caretaker and can take what he is doing, leave him in peace and make his last days pleasant - or if that is not possible, you need to place him. Very sad.
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somanyquestions: Imho, I am surprised that the hospital sent him home with the medical conditions that he has. Since he has LBD, who was his patient advocate? It was IMPERATIVE that someone speak on his behalf.
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You need to have his urine tested fir a UTI first.

As far as food goes, he could be at the point of swallowing is difficult for him.
Put him on a soft diet and add an Ensure or two every day.

You might speak with his Dr about putting him on Hospice Care
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Can you get a referral to a heart clinic in your local hospital? When my 67yo husband (who also has dementia) was released from the hospital (twice) after CHF earlier this year, he was sent home with a referral to the heart clinic. He went once and decided he didn't need them. I did call and ask for guidance one time. They told me to feel free to call whenever I needed to. I do think you should check with your pcp about this. (I also second those who have suggested hospice.)
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It sounds like it is time for Hospice. Start with a call to your husband's physician and he will initate and order. They will ask if you have a hospice you perfer or would you like the Dr to recommend one. This doesn't mean your are bringing in hospice for end of life. Hospice provides comfort care for families when a family member has dementia. The patient does need to be in the later stages, which your husband is. They make an appointment to talk with you and leave paperwork for you to fill out. After they receive the paperwork back someone will call and then a nurse will call to schedule a visit. This is where we are with my mom. Help will be on the way, keep calm and good luck.
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I don’t have experience/wisdom to share. We aren’t there yet. I wonder if calling in hospice would help. Then you would have easy, ready accessible medical,professionals to ask. (Hospice used to mean your loved was on the verge of death. Nowadays a person might stay on hospice for a long time.) My heart goes out to you.
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Have no advice for you. Just want to acknowledge how difficult your caregiving situation is. It is even more difficult with isolation brought on by Covid-19.

Not sure why hospital did not give you specific care instruction. Medicare will cover nurse visits from a home health agency and they are often good about giving care guidance.

Yes ask doctor, but know there may be a time lag in getting access. Home health Nurse can get to your home faster for in-person eval. Still need referral from doctor for home health, but often the doctor’s nurse can handle that.

Believe a doctor also has to order hospice eval.
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My dad had a long road with CHF as is often what happens. It’s an exhausting condition, zaps energy and drive. Though he’ll likely take Lasix or another diuretic there are limits on how much that helps, its often a fine balance to pull off enough fluid without the nasty effects of dehydration and kidney function loss. Each hospitalization with my dad took away more ability, even when he went to rehab after there was always a new, lower baseline of function. He didn’t deal with dementia but was often lethargic and what looked like a lack of motivation. I came to see and accept that it wasn’t stubbornness or lack of willpower, but genuine tiredness and frustration at not feeling good enough to do much. And he was always polite, even a jokester while in the hospital and then coming home to be unmotivated, everyone needs a soft place to fall meaning a place they don’t “keep up appearances” I hope you’ll have an honest conversation with your husband’s doctor about the most likely scenario you’ll see, see if outside care is best for you both, and maybe start hospice.
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He may be depressed. Ask doctor if there would be benefit to seeing a mental health provider or psychiatrist.
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Book an appointment pronto to talk to his primary care doctor about his CHF and get evaluations and treatment. Usually, folks with CHF require medications to help "pee off" extra fluids and strengthen heart functions.

In the meantime, you can care for your husband. Weigh him on a scale every morning with the same amount of clothes (usually underwear) and keep a record of his weight. If his weight goes up, he is retaining fluid. If he is retaining, fluids, he needs to go to the hospital to have it removed with medications while being monitored. He may be more comfortable sitting upright which makes it easier to breath. Allow extra time for any activities he does for himself, but make him do as much as he can for himself.

I hate to bring this up, but the hospital may have considered that your husband has end stage disease. This may be why they did not send him home with instructions or medications. It might be time to talk to his doctor about hospice.
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Have pre-planned funeral or cremation done, and get your affairs in order. Have you considered hospice care? You can call his doctor and get an order.
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I cannot understand how your husband was sent home and nobody discussed his current situation and condition with you. It seems cruel, but maybe because of COVID the hospital deemed it sufficient to just discharge your husband without any explanation about him. His PCP should be able to access the hospital records and talk to the hospital physician who took care of your husband and ascertain what is going on. Given your husband’s age, any change in eating and behavior would not be good. If you think there is further deterioration take him back to the hospital ER for help. Usually there will be a change in staff and you should get better help. Tell them what you told us here that you are scared … sad …confused.
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Bless your heart, you are struggling with so many unknowns and need some medical care advice. I'm a nurse and so when I read your post I wonder, Can you have a discussion with his primary care provider to discuss the care he needs? Could you ask the PCP if husband is ready for Hospice or Palliative care? It's a wonderful medicare benefits!
Were there any discharge instructions given?
He may be ready to pass. Perhaps the lack of eating and drinking is the body's way of getting ready to die. If he has severe CHF and had to have drainage of pericardial fluid, mostly will need follow up appointments or care of some type. I would be calling the doc to discuss all these things and ask those questions. Talk to his assistant and ask firmly that the doctor call you as soon as possible. Discharge planning is required and sounds like it didn't happen. Praying you get answers and comfort knowing you have done all you can.
Blessings ...
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Was he given anesthesia for this procedure? I'm asking because sometimes it doesn't go well for the very elderly and they can be in a temporary or permanent fog afterwards. I don't know if there's anything but time that would remedy it.
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It definitely sounds like it's time to get hospice involved. They can better advise you as to what is going on.
Your husband has a lot of different health issues going on, and his body may be saying enough is enough.
And as far as doing the right thing for your husband, there is no right or wrong when you're dealing with someone with dementia. There is only doing the very best you can, and that has to be good enough.
I think once you get hospice on board, you and your husband will feel much better, just knowing that there is someone else in your corner. I wish you both the very best.
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Call s hospice agency and ask for an evaluation.
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