Decision to Move Dad into Nursing Home?

SRK82 · August 10

I'm brand new here and could really use some support from people who have been through something similar.

I'm an only child, and my 73-year-old dad has several serious medical conditions, including end-stage renal failure and a previous stroke that left him with speech aphasia. My mom died five years ago, so I'm the only family he has left.

My teenage daughter and I moved in with him in January because he could no longer safely live alone. He was forgetting medications, leaving the stove on, falling, etc. Once we moved in, though, it became clear how much more had changed. He became increasingly agitated and confused, rarely slept, woke me throughout the night, tried to drive, cook, do yardwork and other things that weren't safe, and we were constantly battling.

What has been hardest for me is how drastically he fluctuates. One day he can work in the yard and have a completely normal conversation with me. The next he may be extremely confused, falling, incontinent, or barely functioning. It constantly makes me question my own judgment about what he's capable of.

After his fifth hospitalization in seven months, his palliative care team strongly recommended that I seek guardianship and move him to long-term care. I now have temporary emergency guardianship, and he entered a VA-contracted nursing facility five days ago.

Yesterday I visited and he was suddenly my normal dad again — completely lucid and aware of his surroundings. He was horrified that he was there, emotional, and absolutely convinced that when we go to court to finalize the guardianship, the judge will let him come home.

And now I'm second-guessing everything.

For those who have had to place a parent who sometimes seems completely lucid and capable: How did you cope with the guilt and doubt when they begged to come home? How did you keep reminding yourself why placement became necessary when you caught them on a really good day?

SusanB-dil · August 10

Hi SRK - Welcome to 'here', but sorry for the reason.

You are second-guessing the good days. You really need to go by the 'bad' days. Go by the days that he was leaving the stove on, forgetting meds, waking up, the incontinence, trying to drive, etc. As you've said - these things are not safe.

Also remember - 'you' didn't place him there, 'this' horrid disease did.

A dear friend made the analogy of a florescent light bulb. Some days it will barely flicker on, other times it may 'click' and burn just fine, but for the most part, indicating that something is dreadfully wrong. Therefore, not safe to be left alone, and usually, too much for us to care for 24/7.

April23 · August 10

I’m so sorry, it’s very tough. But you have to make your decision on placement based on their worst day/behavior/cognition, because that is the reality, not the good days. Those good days are just a gift.

Quilting brings calm · August 11

You are not doing this to him- you are doing this for him. He is in a place that is staffed 24/7 by people who get to go home when their shift ends and rest. You will still be his advocate, his link with the outside world. There’s no shame in recognizing that he needs more care than you can give … and that your daughter needs your time and attention too. Many caregivers actually die before the patient because they neglect their own health. There’s a saying - the disease WILL take them down, don’t let it take you too,

easy23 · August 11

My 72 year old husband is in a nursing home. His mental and physical problems were more than I could handle. He is younger than most other residents and has good days. I often wish I could bring him home, but then when I talk to staff I find out what a handful he is to care for.

Don't second guess yourself. You did the right thing. Just go visit him and get to know the staff.

sandwichone123 · August 11

I'm going to weigh in here agreeing, but also advocating for the teen, who does not have a terminal condition, and who needs to prepare for a life of independence. She needs space to grow and develop, to develop and maintain friendships. It's good to show her that we care for family, but the uncertainty is making it difficult for her to reach the developmental milestones of pushing away and working on her own identity. It's hard for kids, and often they won't complain because they see it as disloyal.

Another concern is that as personality changes come, the PWD often attacks (usually verbally) the kids and makes their own home feel unsafe.

SRK82 · August 11

https://alzconnected.org/discussion/comment/279611#Comment_279611

That's absolutely true. When we first moved in, we had planned on fun movie nights and cook outs with grandpa. Instead, I found myself getting calls from the neighbors stating that they had called the police while I was at work due to hearing my dad screaming and cussing at her in the front yard and were unsure what was happening. She has been very affected by this, and sadly, my dad does not understand why she won't have much to do with him on his good days when he wants to spend quality time with her. This disease is a nightmare, and it has robbed my daughter of what I had hoped would be some good memories in his final days. Thank you for your input and perspective - that is very validating.

ajzjmsmom · August 11

At the end of the day, from reading your post, you did the right thing for your Dad, daughter and yourself. They will have good days but those good days will become fewer and farther between, so as everyone has said, you placed him during a bad time, now think of that bad time when he has no more good days and would you then regret bringing him back home?

Decision to Move Dad into Nursing Home?

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