Caregiving

a083129 · May 13

Never in my life did I ever think that I would be a caregiver to a person with VD with a heart failure diagnosis. Some days I think I can get through it and then other days I question whether or not I am failing and needing to go to the nut house myself. I feel I am living a nightmare that just won't end, and I have no clue how long this will go on or if I will end up dying before him. I am trying to care for myself, but the demands are still working a full-time stressful job is an extreme challenge. I can't afford to retire yet. I still have 2 years to go. He has limited resources, and I am doing my best to keep him home for as long as I can. Has anyone else been able to keep their LO at home so they can pass peacefully at home? Or does everyone end up sending them to a MC facility? He just doesn't have the resources for $110-$115K per year. I am just lost and don't know what to do.

SusanB-dil · May 13

Hi and welcome. Maybe check on adult daycare for a few days a week? Caregiver burnout is real, and you cannot continue the pace.

Some memory care centers will give what is called respite care for a week or two.

As is said - must get the oxygen mask on yourself first.

Whyzit2 · May 14

have you considered having him evaluated for hospice care? If he qualifies he may get services that

Would help with bathing etc. which has relieved me of some of the caregiving duties.

(((hugs))) I understand and appreciate what you’re going through.

a083129 · May 21

He is on hospice. He has had service now for about 1 month. I've been told that I will have good days, bad days and then horrible days. I know I have been grieving a lot because I am having a hard time believing this is where he is in this life. I see the mental changes every day, little by little. Last Saturday, he was obsessing over my car. He insisted on going over to the neighbor's house to discuss and see if the police could be called because there was something wrong. Long and short, he thought I still owed the gold equinox, and he thought the gold car was stolen and replaced with my new car, and it was a stolen car. When my neighbor told me that he kept talking about the gold car, then it clicked what was going on, but he could not communicate it to me. He could tell the neighbor, but not me. Not sure why. So, now the hospice team wants him to start taking Zoloft which doesn't mix well with Sotolol. I called the pharmacy to confirm my worries about the drug. They told me that it is NOT recommended and that it could cause an arrythmia which is what was causing all the problems in January, thus getting a defibullator. Now, I am questioning why the hospice doctor would prescribe this drug. They were told his heart history and his medications. I am wondering whether I should contact another hospice company and change. He already doesn't like his nurse because she has been really pushy with him. What would you do?

a083129 · May 21

I have started giving him Ativan every 6 hours and it is keeping him calm. Why change drug if it is working with the confusion and agitation.

housefinch · May 21

The ultimate goal of hospice care is comfort care, and it is possible the team felt the benefit of less anxiety on sertraline outweighed the risk of using it with sotalol. If you’re worried about their knowledge level, ask about their reasoning in recommending those 2 medications together. Remember that the pharmacist is answering your question in isolation, not in the context of a hospice patient who may be agitated, anxious, and uncomfortable. Also, it may be worth discussing whether he should continue having the defibrillator active. My understanding is that receiving a shock can be pretty uncomfortable and stressful. In someone on hospice, it might be worth a conversation with his medical team. Same thing with medication to control arrhythmias. Sending you big hugs and comfort during this very hard time.

Caregiving

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