How to handle difficult father who is caregiver to my mom with end stage dementia

Feels impossible to know the right thing

Hey all,
My mom with advanced alzheimers is still living at home with my father who is a psychiatrist, very conservative Christian, and strongly wanting to keep my mother at home as long as possible. My brother died last year so it is just my sister and I trying to support while being states away. We offered for years after my mom's diagnosis for them to move closer to me in Colorado or my sister in Arizona. They refused and said they are happier there...they have no family support but have church support. There is some resentment on my part as it is hard to support from a distance but they had years to move closer to my sister or myself. My dad is so difficult to work with and opinionated even though he is in the medical field. He is trying his best but he in my opinion is hindering her care as he disagrees with most ideas for support and her medical team recommendations. I got a phone call from my mother's doctor asking for help knowing how to support and get through to my dad, as they feel my mom needs to be in a 24 hr. facility. Hospice was visiting but believes my mother needs higher level of care and will not force my mother to eat or bathe while at home. My dad, who is a doctor, has basically alienated the medical support and now my mother is refusing to bathe for weeks...My dad finally had to force to to get in the shower with all her clothes on, forcing her to get undressed and shower. She and my father were horrified with that experience. My dad is now asking my sister or myself to come up to help her to bathe. I don't feel like that is a long term solution and I feel she may need to go to a facility. I told him I needed to think about it and I honestly feel I cannot do that but feel more responsible to try as I am a nurse. My dad has been pretty transparent about what has been going on with my mom since her dx and as a family we decided we don't believe in prolonging life in this state of her mind...my mother was a hospice nurse and cared for her own mother with dementia and she always advocated for allowing her to not eat, etc to allow this disease to be so long and drawn out. But I also struggle with if it is up to me to decide having dementia means it is not worth being alive?? It looks miserable and feels miserable as her family but she seems ok. My parents have been extremely strict evangelical christian my whole life and my dad struggles as my mom has lost interest in their faith...I think it makes him question some things. Our family like many others have deep rooted issues which make all this even harder but if anyone has any advice I am open to it

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towhee

Hi Esther, welcome to the forum. For the doctor to take the step of reaching out to you means things are pretty serious and probably they are concerned about your father as well as your mother. I also think that you are not going to sort this out from a distance and that you really need to see the situation for yourself. Has your father had home health aides in as well as hospice? Did he fire hospice or did they quit? Home health aides with additional hospice services can provide almost nursing home level of care, although it is expensive, but it might be that he interferes with care so much that a facility is the only answer. To care for someone with dementia you have to understand that they have dementia and change your own pattern of behavior, and some spouses cannot do that. You are probably right that your father is making things worse. Many caregivers end up with depression and get burned out. Would he listen to his minister?

I realize that traditional older men do expect daughters to do hands on care for their mothers, but when you live at a distance and are working, that is not really a rational expectation.

Not bathing, changing clothes, or not eating are all common dementia behaviors. There are techniques that help and sometimes you have to change your expectations, and sometimes medications are required, and no one gets it right all of the time, but if you will not try and you will not accept help, you should not be a caregiver. I know that is blunt.

You said hospice would not force your mom to eat. They will not force her to eat in a facility either. They will persuade or cajole and will simply offer, but they will not force. They might try for 5 minutes, take a break, then come back and try again, but that is it. For bathing, unless she has pooped and needs cleaning up badly they are likely to do a bed bath if she really resists a shower.

I hope you have success in persuading your father to get help.

Feels impossible to know the right thing

Thank you so much for your responses and advice...I really appreciate it and it gave me some new ideas and some hope. I want to think about your advice and ideas and try to incorporate it because it was great advice...I think it sounds like a visit is needed. Thank you very much