Managing care long-distance

CC93

I could use some advice. My mom, who is 81 years old, is in stage 4, borderline stage 5. She still lives at home in MA with my dad, also 81. I live in VA and manage all of their finances, medical, house related items, etc. I fly home every 4-6 weeks for doctor appointments, house cleaning, hair cuts, laundry, etc. since my mom no longer has the capacity to do so (though she will adamantly insist that she "just did that" or "was just about to do that"). My parents both vehemently refuse to allow me to bring someone into the house to help with things and allow my father an opportunity to step away for a couple of hours to give him a break. My father also refuses to allow me to place mom in a memory care facility as long as he is alive. Recently, I have started to realize that my mother has been withdrawing money from both her savings account and my dad's - totaling several thousands of dollars each month! She no longer drives, but she is making my dad drive her to the bank multiple times a week because she doesn't remember that she already went! If he refuses, or tells her that she went already, she gets angry and violent, so he gives in. There is a casino near them that my dad takes her to as a way to "get a break" for himself. I'm quite sure that the casino is the recipient of all the money that she is withdrawing! I am pleading with my dad to a) stop taking her to the bank and I'm trying to teach him how to divert her attention until the thought passes for her; b) if he does take her to the bank, he NEEDS to go in with her and control how much she is taking out; and c) stop going to the dang casino or at the very least limit how much she is spending!! My parents are old-school Portuguese and refuse help from others (except of course from me). They have no hobbies to keep them occupied and refuse to learn anything new at this point, so they pass the time either sitting in front of the TV at home or at the casino (unfortunately and horribly!) I really don't know where to go from here. It is so clear to me that, as much as my mother loudly and viciously protests, she needs far more help and supervision than my father can provide at this point, but I am also not in a position where I can move back to MA to help to make this transition nor will they move to VA to be closer to me. I need to stop her from blowing their life savings (and her long-term care money!) on gambling. I need to get her, at the very least, in-home assistance. And, I need to help my dad understand this disease better. He just keeps asking me to "fix it" and I can't get him to understand that I can't. I have given him all kinds of things to read about the disease, but he just continues to be a roadblock and detriment to getting mom the help that she really needs. He continually exacerbates every interaction with my mother and causes her to get violent, throw things, scream and have tantrums. It is having a terrible impact on his health and well-being as well. My grandfather and three of my aunts on my mom's side have had dementia so I have had quite a bit of experience with the disease but, trying to manage all of this long-distance complicates things tremendously. I'm sure that I am not the only one who has been in this position so I'm hoping that someone who understands and has experienced this can offer some practical advice. Thanks for listening...

towhee

CC93, welcome to the forum, so sorry for this situation. Good Grief! First, the forum is a little slow right now, but others will be along. I will do what I can to help, and please know that others care.

I'm afraid that your father might not be able to change the way he interacts with your mom and that trying to get him to do so will just cause conflict and make him more unhappy. He is asking you to fix it, and if you listen to that need instead of the things he is refusing to do, it might free you to make some moves around your father instead of through him.

You might start with your father's medical condition. Reach out to his doctor and find some way to get him an appointment for the next time you go. Inform your fathers doctor beforehand about what is going on. It is not uncommon for the spouse who has not been diagnosed to also have some cognitive issues. These could be caused by depression or other physical problems. Talk also to your mother's doctor. If she is not on some kind of medication for anxiety or agitation, she needs something, and if she is, it needs to be reevaluated. I am not usually one to push medications, but-

Do you have a durable power of attorney (finance) and a healthcare power of attorney for both your mother and father? Or does your father have one for your mother? These are necessary. You should be the one to have these if at all possible. If your mother is past signing one, then you will probably have to go for guardianship. It is not just that they are spending thousands of dollars at a casino, they are leaving themselves wide open for scammers or even thieves.

A geriatric care manager might be helpful here. While your father will not bring in help to the home, he might not resist someone checking in on them once a week or so. This might help you and be someone who can provide info to a hearing if guardianship becomes necessary. A geriatric care manager with a nursing background will be familiar with these situations, and know what care is available locally.

Your mother seems to be obsessed with gambling, whether she is addicted or whether it is just a dementia obsession, maybe medication will help. Are there any other healthy social outlets around? A senior center or church lunch program, bingo, adult day care?

I hope things get better, come back anytime with any questions.

harshedbuzz

CC93-

This is a dire situation.

Do you have the legal papers in order to act on behalf of your parents to protect them?

I am kind of intrigued by your dad allowing you to "manage" so many aspects of their lives including finances. Why is he doing that? It's unusual for a man of his generation to cede that to an adult child without a court order.

I wonder if your dad has had a cognitive shift that you haven't identified yet being so focused on mom's care. My dad's early phase of dementia was mostly about really poor judgement. He managed to day-trade away $350K while mom pretended he was aging normally. That's money she could have dearly used for his care and potentially her own given that she's a serious fall risk with osteoporosis and AMD. Dad's lack of sound judgment was more obvious initially than his memory lapses. You could also be looking at profound depression causing this sort of behavior.

HB

CC93

@towhee @harshedbuzz Thank you both so much for your responses! Your input is very much appreciated. Thankfully, I had my parents do "estate planning" several years ago when they were both in better health. I have both medical and financial powers of attorney in place and had moved the majority of their money into investment accounts that, at this point, only I know how to access. I also have signed medical directives for both of them.

I will definitely look into a geriatric care manager in their area. That sounds like it would be a great starting point to "transition" both my parents into having someone "look in on them" on my behalf.

When I said that my dad is "old-school", he never went to school past 8th grade. He spent his young life working on my grandparents farm and, when the farm was sold, he become a heavy-equipment mechanic. He has never had to deal with taking care of the household (finances, laundry, cooking, cleaning, etc.). My mom handled all of that. Now that she is unable to do so, he has turned that all over to me to manage, despite the fact that I live in another state.

I do have a very close connection with all of their doctors (his and hers) and all are aware of mom's status. Mom is on meds for the anxiety/agitation, though it is random whether she takes them or not. I have a 30-day pill pack that I keep filled so that she can easily take them and have asked my dad to put them out for her every day but often she will just say "I already took them" or will get agitated and flush them down the toilet. Dad is also on meds for depression but I am experiencing cognitive challenges with him now as well.

Again, thank you! It is a blessing to have a place to communicate with people that "understand". This is such a heavy weight to carry...

Ed1937

You have excellent replies above. You can also call the alzheimer's helpline at 800-272-3900. This is a free service and if you call, ask to speak with a care consultant. They are highly educated in dementia, and they can offer solutions to your problems. They are available 24/7.

Jill N

Once allowed legally (your father is not yet diagnosed?), Id move all of that money to an account they cannot access, and only transfer a set amount each month for needs.