My father is in an awkward place. He "performs" for doctors and nurses and fools them with his mental state. He then reverts to his normal which I would characterize as moderate cognitive impairment/dementia. We cannot get a dementia diagnosis... and yet he is unable to remember anything, constant questions, confusion, inability to understand simple processes, repeated information, etc... which then contributes to his demeanor, cranky, mean, bordering on abusive. He uses pity and guilt to manipulate to get what he wants. His underlying condition is COPD. He won't use or take his medications. He sometimes uses his oxygen. Yet complains he can't breathe well... He doesn't want others in the house to care for him. He expects his daughters (me and my sister) to drop everything in our lives to care for him. He has in the past month become weakened to the point of only getting out of his chair to get to the bathroom and often doesn't make it in time and messes his adult diapers. He will eat if someone brings him something to eat, but won't usually go get it himself in the kitchen. He won't bathe or allow others to bathe him. His last shower was New Year's Eve. We cannot give him anything for anxiety because he won't take it. We just got a consult for hospice and they warned us that if he refuses their services, they will have to discharge him from their help. He is in denial about his condition and the need for extra helpers. He is getting to the point of being a fall risk, unsteady on his feet, weak. He is getting to the point of needing 24/7 care. He wants to remain in his home but doesn't want anyone else but family here. He still has "capacity" to make his own descisions. What do you do when he can make his own decisions but the decisions he makes are not in his best interest and he needs more care??? My sister and I are still working and cannot be the 24/7 caregivers. He has two CNAs who split afternoons and come for about 1-2 hours but that is not enough. My sister and I would love to put him in a facility but he will fight that tooth and nail and he has capacity to make his own choices... so what the heck do we do?

Find Care & Housing
The sad truth is that by continuing to do the care you are enabling him to deny his needs. I honestly wish I had a good answer to this, because I understand you cannot "cut and run". If he is able to make his own decisions, and they are not the good decisions, then I would step away a while so that he can come to some understanding and acceptance of this, because without that why would he ever know that what he has engineered may be ideal for HIM, but it is not for others. Sit with him and explain to him that you now need to be more participatory in your own lives. Be certain he has all the phone numbers for 911 help, and tell him that he will have to use them. That you will be there for certain scheduled help with appointments and shopping, but that you cannot continue to do what he is doing. Suggest that you are willing to help him explore living conditions where he will have care and help ongoing, but that you cannot continue on as you are doing.
Helpful Answer (3)
Reply to AlvaDeer

What you do is back off, he has to see his need for accepting change and appropriate help. You’re trying to be kind hearted and help, but it’s preventing him from getting the kind of help he needs. Sorry that’s the reality of it
Helpful Answer (3)
Reply to Daughterof1930

Your father is an adult. You are an adult. Your sister is an adult. You should all be equal and autonomous.

He decides what he'll do with himself. You decide what you'll do. Your sister decides what she'll do. He's doing a pretty good job of it. You and your sister not so good.

Why is it that he can decide what you do?
Why is it that you won't do what you want? And instead you do what he wants?

Answer these questions truthfully to yourself then you can answer your own question: "... so what the heck do we do?"
Helpful Answer (2)
Reply to polarbear

This will sound harsh---but if he can make his OWN decisions, so can you.

Have a 'come to Jesus' meeting with him. Lay it on the line. You and sis can no longer meet his needs. (He has not showered since Jan 1st and has had fecal accidents since then? That's pretty telling of a mind that CANNOT make a healthy choice!) Point that out to him. Hopefully you will have found options for him, give him said options and let him know you'll support any decision that makes his living situation HEALTHIER and SAFER for him. It 'can' be in home, if he is cooperative, but if he isn't, then I wouldn't fuss him at home.

Then walk away and let him decide.

You have no obligation to care for him--and it sounds like you simply can't anymore. The hygiene issue, for me, would be a non-starter. When my FIL began refusing to bathe or shower, I refused to take him anywhere. It was a battle and I am not proud nor happy about how nasty I had to get to force him to clean himself.

OF COURSE he doesn't want any other care. You and sis are doing what he wants and in someplace in his brain, he is working the two of you.

My FIL didn't live long enough to get placed in a NH. We were in the beginning stages of doing that and he died. I know he did not want to live anywhere but his own place, and we made that work as long as possible.

It's called 'tough love' and it sucks, but you need to parent your parent now.

Others will chime in with the actual steps you need to take--I just wish you luck in this.
Helpful Answer (3)
Reply to Midkid58

Ask a Question
Subscribe to
Our Newsletter