Mom early/quickly progressing dementia

Docgus

Hello everyone. I hope I can concisely explain what’s going on and get some practical advice. My mom does not have a diagnosis.

My mom and dad are 89 and 86, respectively, and I have spent the last 3.5 years trying to get them moved to a small house already on my property 3 hours from where they have been living. The move finally happened about 16 months ago while my mom was receiving treatment for a chronic cancerous mass. Though she wasn’t terribly happy about moving, at that time she did seem to accept it. However she refused to get her monthly treatment from anyone besides her doctor 3 hours away.

From that time until now they have traveled back and forth many, many times to doctors, to get more stuff from their old house and to transport their great granddaughter back and forth (another complication).

It has progressed to them now living in their motor home at their previous home since there is no furniture in the house. Dad has been in the hospital twice in the past 6 weeks that they have been gone. I just went down for 24 hours to assess the situation. Dad is much improved but in general his health is much worse than hers.

Mom has become paranoid and claims things like “Everybody is always telling me what to do and I hate it”. She has repeatedly become lost while driving, and while I was there she could never tell me where her car actually was in the parking lot. She told me where she thought it was if she could recall the right words, but she was always wrong. The afternoon desk attendant was helping her in and out of the hospital every time and reminding her where her car was.

She is suspicious of everyone but mostly concentrates on me since I’m the one trying to get her to come back home. She gets very upset when Dad and I talk without her present because we are talking behind her back. She has told dad she wants to get their wills updated and remove me as POA but he does not understand why and states that will not happen. There is literally no other family member to choose from.

As far as dad goes, as I mentioned, he is physically not as healthy and often not strong enough to drive. He also feels overwhelmed emotionally with the whole situation and cannot force her to come back and see doctors here.

I thought I would have more time before having to actually “do something” but I can now see that that time is approaching. How do I start figuring out what to do? They cannot continue to live in the motor home indefinitely and she refuses to come back to Tennessee.

I realize the plan will likely depend on dad’s health over the next weeks and whether he can take care of himself or not. If not, they will have to come back so that we can organize care. At that point I expect I will have to keep her from driving somehow. One problem is that she is not so severe that she won’t notice the car being gone, and it does not matter what I tell her about it, she will not believe me. And since there is absolutely no reasoning with her, she will probably end up walking the 139 miles.

I am sure I have not been complete but if anyone has any advice I would be so appreciative!

Thanks for reading

M1

Hi Docgus and welcome to the forum. What a terrible situation and I'm sorry for it, but you have come to a good place for help and advice.

This may sound harsh and i don't mean it to, but: if you are POA, you need to enforce it and you have an obligation not to just go along but to act in their best interest. Honestly, your mother does not really have a choice here any longer. There is absolutely no way she should be driving--she and you, if you are POA--could stand to lose everything they have, not to mention the tragedy that could ensue from a fatal accident. The car needs to disappear. Say it's been stolen, if you have to, and talk to the local police to let them know that's not the case should she call to report it.

If she is paranoid, you may have to hospitalize her against her will to get her assessed on a geriatric psychiatry unit. I had to do that last year so I know whereof I speak (though it was my partner, not my parent). It's very hard, I know, but the advantage is that the social workers in the hospital can then help your arrange an appropriate living situation for both of them.

All of us who live through this go through various phases of realizing that things are worse than you think and the time to act is now. You have probably been like the frog in the proverbial gradually heating water here, and you are likely very close to the boiling point. You are not going to be able to convince her or get her buy-in. But you have to do it anyway and you have to be the goat, unless/until she forgets. Safety drives the decision-making.

I'm sure others will chime in. Please keep posting and let us know what happens.

mlowe6

I think it’s important to get the Drs on your side as well to help facilitate the new direction of her care because then he/she can formally back you up. Also we have the same situation with the car thing and have been thinking about pulling the distributor cap because they won’t know and they don’t have the money to fix it, so no more car. If you have the money an elder law attorney can also help but for me they are just way too expensive. Use the internet and do your own research and make sure you get several sources not just one or two. Try to find the sources that are best suited for your state and what your family goals look like. I know how hard this is for you my parents are both suffering greatly and are stubborn too and about the same age. Please get your rest so you can effectively deal with them because if you go down then who will they have? My prayers are with you!

towhee

You had a good plan for your parents, I am sorry it has not worked out so far. The first thing is to never let the great granddaughter ride with them again. It is just too dangerous. If you can, consult with a lawyer about your DPOA, find out what you can and cannot do, and whether it is good in both states. Having the car have mechanical problems might be better initially, especially if you think your mom might call the police. Is the motor home drivable?

I agree with getting the doctors informed as to what is going on. Has your moms PCP evaluated her recently with a focus on her behavior and her getting lost? Your moms behavior is similar to that of early stage dementia, whether that is the cause or not. The PCP could check the usual causes and possibly provide medication that might help, and if you look at the You tube channels of Dementia Careblazers and Teepa Snow you might get some info on how to interact with her that will reduce her behavior.

If your dads doctor knows what is going on perhaps he could say it would be a good idea that your dad have more care available to him for a couple of weeks. If you sell it as temporary, maybe your mom would move back. One step at the time.

Do you know what is drawing your mom back to her home besides the doctor visits? Are there family and friends she is visiting? Is your father going just for her or also for himself? In the later stages of dementia our LOs often "want to go home" sometimes when they are in the home they have lived in for 20+ years. Sometimes that desire is caused by an unmet need, emotional or physical, sometimes it is just that "home" is where they thought they would be like they used to be, younger and well.

We never know for sure what will work, so trying everything is sometimes the best option. 🙄

Docgus

Thank you, M1. I know you are right so I just need to figure out logistics.

And yes, at the top of my list this week is calling the doctors she actually likes to discuss the situation with them and get their advice. Since they are in Ga and I’m in Tn they should be better aware of legal issues.

https://alzconnected.org/discussion/comment/171464#Comment_171464

My dad says she 1. Wants to keep her doctors, 2. Wants to stay with Aleah, the GG and 3. Still keeps in touch with friends there. Dad has taken her to several churches up here that he thought she would like but she refused them all. She does not want to or thinks it’s too difficult to make new friends. I understand all of that, but of course I want the safest situation for her and that’s not it. The whole situation really bites.

I am also reading through all the literature people here have recommended and I am a health professional so I understand the technical aspects of this disease process but I am still a daughter and find it very difficult to interact with her without pissing her off. I am hoping for some guidance with that and will check out the YouTube videos mentioned.

Thank you all so much! This is a great help!

Shan

One of the many difficult parts about this disease for me is still all the lies we have to tell our PWD to keep them safe and get them to cooperate in the ways we need them to. I know here we call them fiblets because they are done only from a place of love and care, but it is still hard to get past the notion that I have to keep lying to my mom. But, I do it because it is one of the only things that works in a lot of circumstances. For instance, your mom refuses to see a doctor closer to you and insists you drive her 3 hours to her own doctor - solution a fiblet that her doctor retired or moved to another state and you have to find a new doctor together. Making sure they can no longer drive when it’s not safe anymore - solution a fiblet the car had to go in for repairs, when it takes longer to fix than she will believe, the part is on back order, they found more wrong with the car when one issue is “fixed”, just keep kicking that can down the road. She doesn’t want to move to the home on your property for her own good- solution, a fiblet it’s not for her it’s for your dad because he needs more medical care right now and it’s only temporary. I agree if she’s being paranoid, it might be a good time to start finding meds that help. We waiting too long to start that with my mom and we are struggling to find ones that help while she’s in MC. We’ve been forewarned by the director of nursing that if her agitation and combativeness gets worse, we are looking at a geriatric psych admittance to get her behaviors worked out so she can stay in MC. It’s so much easier to start addressing problems before they escalate, and sadly with this disease escalate they will. Another way I found to get my mom to cooperate is to distract her with something else. She responds to humor so if I can do or say something silly or bring up a past funny incident to get her to focus on I can usually turn a previous no into a yes long enough to get her to do what I need her to do. Also, we need to remember even though their brains are broken and not working like they used to they still can feel sad and scared and grief for all they have lost to this disease including autonomy, independence, making their own decisions. I find that when I enlist my mom’s help and give her options to solve a problem I can get her to cooperate better than if I act like a drill sergeant and tell her to do something. For instance when she’s refusing to go to the dining room to eat dinner, if I just tell her it’s dinner time and she needs to go eat, I usually get a “no, it’s bedtime, I don’t eat now.” But when I say “they are setting up the dining room for dinner, should we go see what they are preparing to eat and help?” I usually get “yes, we can do that” . The saying “you catch more flies with honey than vinegar” really helps when trying to get cooperative behavior from PWD so we always have to keep looking for the honey that will work in each situation and avoid the vinegar. Hope this helps. Keep coming back and posting for more help and support. This is a good, safe place and everyone here is so helpful.

Docgus

So I found my parents’ wills and health directives this weekend. They are each designated as the other’s POA and I am listed as secondary POA if either is unavailable or unable. The way things are going my dad will likely die before mom and I am afraid she will try to get me removed as her POA at that point. I may be wrong, but what can I do now to avoid that possibility? Do I have to have her legally declared incompetent? Is that even what it’s called?

Docgus

No drama over the weekend and dad did go “home” to the motor home Saturday. And just to clarify, their preferred doctors are not 3 miles away, they are 150 miles away 😳 from me.

jfkoc

Please check to see if the document is a durable power of attorney. If not your position as agent is null and void at some point.

At any time your father can quietly resign leaving you as agent. If his POA is not durable I would have it redone.

At no time would I discuss any of this with your mother.

No more driving. Tell your mother she has to take a test due to her age. If she can not drive then she may get tired of being stuck in the mobile home.

Now is the time to be strong and do what needs to be done and just be ready to accept anger in return.

-J

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