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..
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.
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.
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.
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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