It's actually not true that you change so much that you can't be proactive. The problem is denial. So people want to gloss over the early, early symptoms and then very few follow through. In the Netherlands only 100 out of 45K with Alzheimer's choose medical aid in dying in any given year. In Switzerland they say it's only "well educated, very determined people who have planned for years."

We had a woman here in Canada, a psychologist who also documented her slide. She again was extremely self-aware and the period of competency for subtle changes lasts in years, not months. She documented her thoughts on www.deadatnoon.com. Most people are selfish or afraid and just don't want to think about it so ignore those early signs.

I do the SAGE test from the University of Ohio every six months and I am 100% certain that I will catch the window and follow through. I'm not throwing away a lifetime of assets on care and I refuse to dump on the low-status women care workers who are stuck doing this awful job.

Anonymous wrote:Go back to court. Explain the situation.

We have medical POA. I'm more interested in who would give us a balanced medical perspective.

Sheppard Pratt in Baltimore has an inpatient memory clinic where your father could be thoroughly assessed and hopefully stabilized before being moved to a care facility. We did that for my mother (in another state) who would randomly become violent and throw things with her Alzheimer's.

https://www.sheppardpratt.org/files/6114/2775/7799/670_03_Neuropsych_memory_bro_web_ready_02_2015_wbi.FINAL.pdf

Anonymous wrote:Good lord this is a grim thread. Haven't faced this (yet - hopefully won't - trying to be optimistic!) with my parents, but yikes this has me thinking - both of them, and me (and my husband) way down the road. Can't there be a better way?? Who wants to be in this situation? I would so much prefer to be dead than inflicting this torture on my daughter (my only child) - and I know my mom and dad would answer the same way. So why do so many end up inflicting this horrific situation on their loved ones????

I am in a similar situation, and my dad said the same thing you are saying (and I say myself) about never wanting to live this way, and never wanting to inflict this on their child. The problem is that the disease changes you. Before my dad lost his ability to make decisions he started to change, so that he was willing to live with his deterioration rather than die. Before the disease he absolutely would have wanted to die rather than suffer the indignities he now suffers, and rather than inflicting pain on others the way he does. But the changes happen slowly, and someone would have to have the desire and ability to commit suicide before they become more impaired in order to avoid this fate. There is nothing other than death that would have prevented my dad's decline. Its terribly sad, and I miss the man he was.

Go back to court. Explain the situation.

Anonymous wrote:Great advice given, OP.

Been down this road before and I suggest reaching out to your father's physician if he has one. The physician might be able to provide a medical referral or at least steer you in the right direction.

Your father may need to stop taking some medications as they are prolonging his life. I had to get hospice involved with my dad's care (dementia); my mother was insisting that my father take his blood pressure meds, have dental cleanings, etc. when it was inappropriate.

Establish medical proxy, figure out if you want a DNR, too.

PP - My father is on a lot of meds for high blood pressure, diabetes, etc prolonging his life. The whole thing is crazy. His health is getting more robust while the physical disabilities and the slide into dementia is accelerating. He is at an assisted living place. Is it someone there I would talk to about whether his care is being managed appropriately? I feel like somehow he must know that he is trapped and living an endless nightmare.

Good lord this is a grim thread. Haven't faced this (yet - hopefully won't - trying to be optimistic!) with my parents, but yikes this has me thinking - both of them, and me (and my husband) way down the road. Can't there be a better way?? Who wants to be in this situation? I would so much prefer to be dead than inflicting this torture on my daughter (my only child) - and I know my mom and dad would answer the same way. So why do so many end up inflicting this horrific situation on their loved ones????

drugs

Would also be interested in the name of the above place. Wondered if anyone has a parent who has issues with tardive dyskinesia? My parent got that from the antipsychotics (seraquel)-it was awful shaking everywhere. Luckily it stopped by now no one knows what to give him. I feel like even the doctors are clueless. Worries he will be kicked out if his behavior doesn’t improve and he is already at a memory facility that is part of sunrise. Would be willing to go to Lancaster if that is the best closest option.

There is a place in the Lancaster area run by Mennonites that manages violent dementia. It is literally the only place that would take my friend’s husband.

I’ll try to get a name.

OP, can you slip his meds into his foods so you know he is taking them? Perhaps that will help with his behavior? A transition to a facility will be very difficult if you promised him he could stay in home. Also, once you move him to facility they can give meds to keep him under control but that really is no way to live.

Can I ask how much time do you or other family members spend with him on regular basis? I am taking care of family member and I know they do better with seeing a family member regularly. I also play games with them which they look forward to and it passes the time and they appreciate the company. It gives us both something to focus on other than their condition.

OP here and thanks for all the replies. My dad is in a rural part of Maryland and does not have specialists beyond his neurologist. He is on anti-psychotics now or is supposed to be but is not always consistent with the medication. He has home health aides for the moment but we don't know how much longer that can continue as he has attacked two. If he decides he doesn't want to take the meds he won't and will get very angry about it so the aides back off. I do know about the UTI and mental state connection as this is one of my MIL's frequent problems (yup I've got the caregiving on both sides) At this point I feel like if we can get him into a place it will be a better set up than having him at home He did carpentry and building as his career and alone in the house he is "tinkering." In his altered state he is slowly destroying the house. I learned that he removed the dining room pendant light over the weekend. He's removed locks from doors and messed with plumbing flooding the basement. Why hasn't he been moved already? He fought guardianship tooth and nail and when my sister finally got it it came with the caveat that he remain in his own home and we now have to go back to court to get him moved to a facility.

Anonymous wrote:My dad has dementia and is violent when upset. His dementia actually looks like mental illness (to me at least). He has now assaulted a second caregiver. He remains physically very robust. Anger was always his go-to emotion before he was ill. My sister who has guardianship and actually works in the nursing home industry says there's nowhere for him to go. My other sister and I think he needs to go into memory care but I know that places can be selective. What are my options?

OP, you don't mention what medications your father is on currently. Can you post if he is on any? Also, have you had your dad checked for a UTI? They can really mess up an elderly person and may go undetected.

Anonymous wrote:You can search most states online records for licensing surveys. Potomac valley’s skilled unit does pretty good on their last few surveys. Based on the patient demographics part 75% if their skilled patients have dementia. Seems like a solid option but I would still recommend ask about their activities/programming interventions.


http://mhcc.maryland.gov/consumerinfo/longtermcare/Nursing_Home/Users/FacilityProfile.aspx?FacId=15024

Survey's don't include everything nor do they talk to everyone at the nursing home. My relative is at a highly rated one and its not a good place.

It also might benefit you to connect with a geriatric care manager; you can google for someone local who is accustomed to managing very complex cases and is familiar with local resources and facilities.