As many here know my brother & I are the DPOA's for our stepmother.
She has Front Temporal Dementia, it started about 12 years ago, no name put to it at that time, but we noticed subtle changes in her cognitive behavior.
Four years ago she went into AL, 2 years ago we moved her into MC as she was hoarding food, rocks, sticks, shells and dumpster diving, climbing on the ladder and jumping into those big commercial dumpsters.
For the first year and a half, she continued to do what she liked to do, draw and color, plus take daily walks with the staff. She bathed and changed her clothes.
Two months ago, she didn't want to bathe. Then she wouldn't put on clean clothes. Last month she stopped going to the meet up room to color and draw. Ladt two weeks she won't come out of her room; she is sleeping most of the day.
The psychiatrist met with us on Wednesday, he started the usual go around, well maybe this or that.
We had told him before, just lay it out to us, we are the finders of truth.
He responded, " Most family members are in denial and don't want the truth, you two are different"!
Yes, we are, we have prepared ourselves for the inevitable.
Not sure what our next move will be but NH care can be provided right where she is, so most likely that will be the next step.
Her time is around the corner, I detest this disease, it has tenacles that reach far & wide affecting all it comes in contact with and there is no way to stop the downward progression.
I guess that I am just frustrated, we have an epidemic on our hands as people are living longer and still no cure.
Rant Coming! The government just spent 6 billion dollars freeing Iranian hostages that shouldn't have been there in the first place! Dementia research could have surely used this money.
Thanks for listening to this disjointed post, right now my heart is filled with sadness!
May The Lord give you peace, comfort and mercy for this sad time.
I am sorry to hear your mother has taken a turn for the worse. Dementia is a terrible disease and it's heart-breaking the way it destroys people and families.
You are wrong about the 6 billion dollars being paid to Iran to free people being held hostage.
That money already belonged to Iran. It was part of their country's ecomony.
That money was in an American bank (Chase Manhattan Bank). It was deposited there along with a lot more when the former ruler of Iran the Shah (or king) stole it then fled country in the 1970's when they had a revolution and the Ayotollah Khomeini and his group declared that Iran would now be ruled under Sharia Law (religious law based on the Koran). They wanted Iran's treasury back from the American bank the former ruler deposited it in. So they took American people hostage and demanded it back.
Most of the money was given back, but not all of it. The American government was holding the rest. It was recently given back to the Iranian government.
It was their money to begin with.
Many people hear this word lately and a shudder goes through them. BUT, it has the power to study and diagnose where researchers and doctors have failed (my hubs just sent me an article the other day of such a case).
This therefore means that, maybe combined with other info (DNA test kits?), it may have the power to find the cause of some other diseases.
Can AI be used for evil? Sure. But Cain killed Abel with a simple rock. Can rocks be used for evil? Sure. But they create foundations and protection and housing and gems and more.
Right now with AI there has never been more hope to find disease origins and therefore preventions or cures. Cancers? That, too.
Money and funding may not be what finds answers when it comes to dementia. I'm looking forward to the day where we'll have one less disease to rant about.
MeDolly, may you receive peace in your heart ((hug))
"Not sure what our next move will be but NH care can be provided right where she is, so most likely that will be the next step."
You are right. She isn't any longer at a level of care where ALF is appropriate placement any longer. I do know that one of the worst problems in my brother's ALF was the struggle for staff, admins, clients and their families to deal with the issue that some people there were simply too far into dementia, and unable really to participate in group living (which is what it kind of is). Those clients took up all the time of the staff, and often were difficult for other, more well residents to deal with.
I think really a psychiatrist can't do much other than try the usual drug cocktails, and because resident is not in hospital situation they cannot easily assess how these meds are working. The line strived for is so "fine" somewhere between struggling and sleeping.
We simply live too long. I don't know that there will ever be an answer to the plaques, the aging brain, just as the aging heart has only one answer--it being death. While we may have no "answers" any time soon (just as we don't with mental illness) I do wish there were more research and most of all BETTER affordable care. And better support for those struggling to provide for elders in a home situation.
As to the connection with the freeing those held in Iran, I just can't put the two together.
To me it's apples and oranges. I happen to agree with you that this last release was not a good thing, but I agree for different reasons. For me the problem with it is that it encourages this kind of piracy--this taking of hostages.
As to what we spend on. Problem for both parties is the amount of money getting stuffed up the coatsleeves. All the deals. All the waste. It's all SOOOO big that it makes it easy whether city government (my own SF is rampant with fraudulent use of everything--we have a little paper called the Marina Times that pretty much lets us know of the pay-to-play deals weekly).
Human beings are simply not very nice animals. Never have been. Like every other animal on the face of the earth it's all about territory and breeding rights, the struggle, and in that struggle we are quite the most unpleasant and cruel animal ever created to my mind.
Perhaps AI will kick us off the face of the earth. Perhaps that's for the best, I always think.
But don't get me STARTED, Dolly. It's too early in the day.
I sure wish you luck with next steps and hope you'll keep us updated about it.
That's the kind of assumption that is self fulfilling and why so many people are looking for answers on sites like AgingCare. I've seen that some people go very quickly after reaching this point, for her sake (and yours) I pray she is one of them.
How do you agree about it encouraging piracy from Iran because the U.S. gave them back their money which was already theirs?
Say someone took your wallet. Would you do nothing and just let them have it?
I don't think so.
Then the theives decide that they will return your wallet. Only they will be holding back half of your money because they don't think you should have all of it.
Are you just going to say okay and let them keep it? I don't think so.
The U.S. had Iran's wallet. They wanted it all back.
As for your other point on AL. It is so true. My facility did not allow residents to stay if their care progressed to needing nursing or memory care.
Towards the end of my time there (and past of the reason why I left) was because the new administrators were allowing people to stay when it was dangerous for them to.
We had dementia residents taking off all the time. We had falls and injuries when residents became immobile ad should have been in nursing homes.
I shouldn't even have commented in all truth, given the amount of news I watch nowadays. I have pretty much removed myself from everything save 1 hour of NPR in the a.m. At 81, simply not my world at this point. The problem for another generation. Been there and did that in my own world.
Over all, any "deals" we make with kidnappers does, to my mind, cause more kidnapping. But we can agree to disagree given we often DO agree, ha ha.
On to the next subject at hand: Yes yes and yes on those staying too long in ALF when their needs have progressed. The admins at my brother's facility would often attend the cottage meetings and would discuss the problems they have with trying to keep residents who cannot afford the MC facility. They tried to meet the needs of all families, residents, and they were very active and pro active. But being there you could not help but witness the problems that the staff had trying to care for one person who gobbled up the care of 14 others housed in the same cottage. They were very good at recognizing they could not keep residents in the lower cost care. But it was a tragedy and a struggle for all involved.
I am curious . Did your friend end up with Alzheimer’s at a younger age than her Mom?
One of the things the doctor who diagnosed my Mom told me was that , dementia is common in people who are worriers , or in general very unhappy , or stressed a lot . My mother was like this due to her narcissism and always wanting things her way and feeling like the victim. She did no caregiving .
I am a worrier because I am a fixer , and always waiting for the other shoe to drop . I’ve done a lot of caregiving which made me very stressed . My mom and her mom both had dementia . I’m wondering if the stress of caregiving is going to make me come down with it at a younger age than they did .
thought so. I just hope I’m pleasant and cooperative like my grandmother was . I don’t want to be the horror that my mother was . Dementia on top of her narcissism was a bad combo .
I love NPR myself. You know what I find to be one of the worst and most disheartening things in the world?
Cable news and cable news talk news shows.
I have had to listen to hour after miserable hour of that crap for years and years. On the job and at home with my mother.
It's hell on earth and no mistake.
I am so sorry to hear your news. Dementia is one of the most difficult challenges in our lives.
Money does need to be raised and allocated for further research. It’s fascinating to think about how far we have come regarding our health care issues. We still have a long ways to go!
Wishing you peace as you and your brother continue to care for your stepmom.