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.

a083129 · June 8

We did have the defibrillator turned off. I will ask the hospice team about keeping him on the sotolol. Over the last few days, I have tried to encourage him to stay up. The best I can do is when it is time for meal, to get him up for it, eat and then he wants to go back to his "home" and sleep in his bed. Is this normal? It seems like he is being more tired and not really wanting to engage in much anymore. Yesterday, I was able to take us for a drive to a local State Park that we use to RV in hopes of bringing some life back to him. He enjoyed if for the moment we were in but to no avail, when we got back home, it was back to bed. He didn't want to stay up. I suppose, he is at the point that he wants to be in bed more than up. I am wondering if the heart failure is progressing and heart slowing more which is why he is so tired. I will ask the nurse on Tuesday and the CNA tomorrow if this is all normal or not and what more I should be doing other that what I am doing for him. At times, I just feel so lost and alone. I just need someone to hold me and hug me. I cry lots during the day to try and relieve the stress I am experiencing. This is most definitely the hardest thing in this life to go through, to slowly watch my love one fade away. He doesn't complain of any pain, for which I am thankful.

weareallunique · June 8

You may want to talk to a no cost social worker that the Alz Assoc provides- info below . It is hard to accept when a LO has a disease we can't cure or slow.

I hurt for you when you say you took him for a drive " in hopes of bringing some life back to him." Sadly, the disease is progressive. Changing meds for comfort in the present may make sense to the hospice doctor as he isn't going to heal.

Maybe he did want to separate the assets when you divorced so that you wouldn't lose everything because of his health . Have you talked to an elder law attorney about what options for care are available for him? If you are his DPOA his assets could probably be used for the consult.

If he is alone during the day while you work you may want to look into care options sooner than later since he's wandering - going to the neighbor- he may let people in the house, wander leaving the door open or unlocked while you aren't home.

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SDianeL · June 9

so sorry you are at this stage. Sleeping a lot is common in the late stage of the disease. Let him sleep. Continue to wake him for meals. Can you prevent him from going to the neighbors’ house? I also wouldn’t take him away from the house. Maybe just outside for fresh air for a few minutes. Hospice focuses on comfort care not getting better. Trust they know what they are doing. They would weigh the side effects vs the benefits of the drug. Glad the Ativan is working. Hospice has counselors and Chaplins. I would recommend talking to them. They understand what is happening and what you are going through. We’re also here for you. Come here often for support. Sending prayers and hugs. 💜🙏

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