Working with an uncooperative caregiver/parent

doehmke

My dad is the primary caregiver of my mom. My mom is in the middle stages of Alzheimer's and they are living alone in their own home. Dad refuses to share medical information regarding mom or himself (my siblings and I have seen a decline in his cognition, behaviors and abilities).

Dad is unable to speak due to Aphasia, caused by multiple TIAs. We have also observed a marked decrease in his ability to write understandable messages and texts (grammar, context, word placement). I'm in contact with mom's neurologist (parents issued a HIPAA authorization). However, dad will not give any of us access to their myCharts and we have no idea who dad's healthcare providers are. We have not even been allowed to read the language in their long-term care policies.

We don't know how and what dad is communicating to their healthcare professionals. Mom's neurologist had no idea how far she has slipped in abilities and memory since the February consultation until I called a couple of weeks ago.

This has been going on for a couple of years and things continue to get worse for them. We are trying to avoid a catastrophe, but not sure how to begin to manage this situation without taking legal action. Dad has dismissed any discussion regarding assisted living communities. Any guidance/advice would be greatly appreciated!

Thanks, Dawn

M1

Welcome to the forum, though I am sorry you have need of it; you have come to a good place for advice and support. This is a complicated version of what happens when the primary caregiver doesn't outlast the loved one with dementia: except now you are dealing with two persons with dementia. You should absolutely take legal action, though it is likely to be quite painful. You can't really expect to reason with him, or that he will cooperate in any way. There's a saying on this forum that safety has to drive the decision making, and it sounds like both of them are in danger. You may have to sue for guardianship of both parents. Certified elder law attorneys are the ones to consult; you can find lists by location at nelf.org.

Some of these might be able to persuade your dad to sign over POA; it's not their first rodeo. Some here have had luck with the strategy of saying that everyone in the family is updating their paperwork. But it's probably best to go in with the attitude of being prepared to sue for guardianship and if it settles for less than that, well and good.

H1235

I agree with M1. I know guardianship sounds extreme, but some extremely bad things could happen if it’s not done. I know it will probably cause some very difficult problems with your relationship with your dad, but the alternative could be much worse. I’m my opinion you decision should be based on safety and their overall health. Regardless of what you do you will probably have a hard time not angering your father, so trying to avoid it is just not going to work. So sorry you are going through this.

Victoriaredux

If your Mother is middle stage dementia and your Dad can't talk— how would a home fire or break-in even be reported /noticed to get them help? Are they driving- still handling their finances? Sounds like you and your siblings need to get with a good elder law attorney to game plan getting them safe asap. And neither of them may ever understand or agree the steps that need to be taken so you'll have to work around them .

Do they have legal documents - like a trust already prepared by an attorney , maybe they drafted DPOAs but never shared it with you kids . If they own a home then the house should have been placed in the trust & the document will have the attorney' s name . You can also check if their property taxes are current as a quick gauge if he is keeping up.

I'm sorry , it is sad to see and nothing anyone is prepared for—especially from the folks who raised us and kept us safe all those years, now they need you . You may be tempted to "ease" into it . My experience is half measures just drag it out . When the flag is thrown on the field for safety , you have to go for complete physical and financial safety. Dementia doesn't reverse. And since trying to get agreement doesn't work you'd just be making your relationships worse tussling trying to somehow get them to see the wisdom .

Quilting brings calm

We have a saying her about uncooperative or stubborn parents- sometimes you have to wait for the crisis. In your case however, that crisis could be fatal in the case of a fire/ medical crisis etc- since she’s middle stage and he can’t even talk. He can’t even call for an ambulance.

So I think you do have to pursue guardianship. Even if it is not granted for him, maybe you can get it for her and get her into a safer environment. Maybe once she is placed, he will follow to be with her.

harshedbuzz

It sounds like you are going to have 2 options.

You could sit by and wait for the crisis as QBC mentioned. There will come a point when dad can’t manage due to sleep fragmentation or incontinence care or he has a medical crisis that requires you to pick up pieces on the fly.

Or you could push for guardianship now and hopefully prevent a financial crisis in the form of dad being in an accident and being sued or them being scammed or even dad not paying his property taxes or LTC premiums and losing assets needed for their future care. IME, guardianship will trigger a court-appointed evaluation of dad at the very least. Given that dad has clearly had a cognitive shift and cannot express himself I would expect you’d prevail.

A friend and his brother had to obtain emergency guardianship of their dad because he was hoarding and not safe. Dad was a retired PhD scientist with a lot of cognitive reserve and decent communication skills. He even had the wherewithal to engage his own representation. But in the context of both brothers in agreement and dad’s poor judgment/executive function and memory, the judge did award both emergency and later permanent guardianship. Weirdly, he lived in a cottage on the older son’s property and was very involved with the family. During the guardianship process, he continued to have dinner and socialize with them as he always did.

HB