@surfcity Roz Chast (a memoir) already wrote the book “Can’t we talk about something more pleasant?” referred to way, way back on this thread. Slow decline of her meek father and overpowering mother handled by only child Roz. No details are spared. Pictures on every page (cartoon like).
Well, we are still playing hot potato with the folks not wanting to talk about finances or the ONLY facility they’ve wanted to live in finally being available but requiring a 7 figure buy-in and monthly fees of nearly 5 figures for meals and basics. They’re supposed to be moving in this month but still haven’t figured out finances or moving or anything else.
They have asked several times if I want to move to their home and I’ve repeatedly said it’s too big for us (plus it needs a ton of work and makes me physically ill with the carpet and other allergens).
Everyone is acting like things are great but there are lots of gaps between how things are and how they’re magically all supposed to fall into place in a very short time period. I have no idea how things are going to work out.
My brothers each gave some financial authority but no one even has the entire financial picture, including my folks. Tonight my brother and I tried to impress upon dad that he needs to find out how much money and when it’s due so assets can be liquidated.
@HImom does anyone in the family have POA to take this over for your dad while pretending they are not taking it over? I know that my dad, about 4-5 years ago, would declare with such confidence that he would “take care of it” and with details about how he would “take care of it,” we believed him. He didn’t and I learned quickly I just needed to take over while pretending he was managing the finances. One thing about dementia, initiative is one of the first things to go.
Elder Rage or take my father please by Jacqueline Marcell is an excellent book. I read her book and attended one of Jacqueline’s presentations years ago. Sadly although my parents have wonderful insurance, my mother refused any medical evaluation for my father’s mental decline for over ten years. Dad has multiple specialists but not a primary physician.
I think it is too late to slow dad’s mental decline and it is sad.
The two brothers have SOME power but dad is wanting to “be in charge,” even tho he has no idea how to deal with all that it entails and how to manage to forward. Dad claims that he’s given power to one or more of my brothers but they don’t even have all the info on his assets.
@lamom If it makes you feel better, we don’t have any good evidence that anything works well for the mental decline of dementia.
@HImom, I would encourage you brother to surreptitiously find and be prepared to take over the accounts. My father wanted to be “in charge” and until recently, I pretended he was. But the financial advisors for the various accounts all called and made arrangements with me unbeknownst to dad. It requires snooping (to find the accounts) and subterfuge. Something I don’t come to naturally but I’ve become quite good at it.
Yes, my brother is doing what he can and already has power over all of mom’s accounts (that dad hasn’t already spent). It’s so good that he’s been doing this or I don’t think they’d have anything left! It’s really sad and I’m very grateful to brother for stepping up, as the others play “least in sight.”
GTalum, true but dad hasn’t had opportunity to be examined. Everyone is different but friend’s dad who started decline before my dad has been helped immensely. I am pharmacist on team that’ works together with emphasis on non-med interventions sometimes we get lucky, but at least we try.
^ true. if dementia is caused by a b12 deficiency, or result of a side effect from medication, correcting those things would be impactful. Do you think any of the approved medications for Alzheimer’s have been effective ? I applaud you for your efforts to intervene. It’s such a horrific disease, and sadly the medications to reduce beta amyloid or tau have not been too successful.
Re: meds for dementia. My mom was on one for a time. There was some short-term improvement, but it didn’t last. In all honesty, I’m happy she had a rapid decline - only 15 months from moving from rehab after a fracture to her death. The dementia was so hard on her as she knew it was happening and it would never get better.
With my in-laws, H and his sibling had to tell FIL that his days of managing assets were over. They had deposits spread all over town and he could not keep track of any of them. He’d keep lists and lose the lists or spend entire days fretting over a CD about to expire. SIL was retired and took it all on. They pay her to handle bills and banking and it is a load off of all of us. It was incredibly difficult to do, but there were a couple of things he’d done that in hindsight were flags that it should have been done long before. It started slowly with each transaction reviewed to where we are now with SIL doing all and keeping records for tax, etc. we trust her completely.
We stopped mom’s meds for dementia as there was no improvement. We got more bang for our buck stopping her cholesterol meds. For dad, the meds did make a difference. The problem is that he couldn’t remember to take them daily and was doing so inconsistently. I was planning on starting again about 4 weeks ago, but we can’t seem to get the aides to give mom (also someone who doesn’t take meds unless given to her) her one BP pill daily. I did not want to start the dementia meds until I knew it could be done regularly. I don’t think there is much point in starting again now.
There is a range of cholesterol medication - and different insurance formularies may be a match. One doesn’t want to risk a stroke to save $$ on important medication.
Agree that memory medication - if it doesn’t seem to work, can be the one to cut.
If the paid aid doesn’t ‘remember’ to give the medication, you write up the ‘list’ (and have the BP pill first on the list) so the aid has the visual aid to remember the important things to do during parents’ care.
Some memory meds have tough side effects. I’m pretty sure Aricept contributed to my grandmother’s physical decline.
@SOSConcern, when I say “more bang for the buck,” I mean better improvement in memory. I think the cholesterol medication is the first to cut and the data on prevention for those over 80 is questionable. I’m using the aides and the CCRC and they are supposed to be supervised by the RN. Isn’t that why I’m paying more than if I hired one privately?
Over 80 - don’t know the data there. I think case by case on how ‘frail’ that particular body is, what is medically indicated. H’s aunt at 96 had COPD (chronic obstructive pulmonary disease) and was too frail for aggressive medical intervention. She had recovered quite remarkably from a stroke which affected speech and one side of her body (she was over 90 with the stroke). She lived a full life.
One has to use medical and personal judgment, case by case.
Heck, I am sure going to question getting off of Tamoxifen at 10 years - I sure don’t want to be one of the folks that could have benefited being on it longer than the statistics show (estrogen positive breast cancer).
Yes. One can’t assume these are guarantees, that somehow memory meds are the better life decision than not. My gm didnt have Alzheimer’s; after a more intense work up, the docs decided normal senile decline. I feel (rationally) that she should not have been on the Rx. At the time, memory meds could/maybe slow the progression, not reverse or halt. And were known to work best earlier- before age 60?
For those whose parents are more clearly and certainly diagnosed, it needs to be an informed decision.
I’m very grateful that I noticed this thread. I’d like help putting my mother’s decline into perspective.
Last year my mother was officially diagnosed with mixed dementia, with vascular & alzheimer’s symptoms. She had non-significant short-term memory issues for a few years: symptoms that could be annoying to others, but didn’t negatively impact her. Then last year she had worrisome problems with executive function and judgment. Until then, I would have described her cognitive decline over those recent few years as “normal” senility, given she will be 100 years old at the beginning of 2018.
She began to take aricept in Jan 2017, and namenda was added a few months later. Her weight began to drop significantly (about 10%) & the aricept was decreased in May. She has gained back about 1/2 of what she lost.
Her physical health is generally good. At worst she appears frail & walks very slowly. When she agrees to use a cane & unexpectedly needs to walk faster, she’ll carry the cane to speed up. HBP & Diabetes (type 2) are managed well with medication. She sleeps more (even before beginning aricept & namenda), preferring to lie down or nap in the morning. She does not have symptoms of depression. She lives in senior housing near my brother, who sees her nearly every day to ensure she takes her medication & eats; has an aide come in twice weekly; and attends a day program twice weekly. Although she lives alone, she has a good support system in her building.
My concerns come primarily from living a long plane ride away. With that in mind, I turn to all of you with experience.
Right now, I think the aricept should be returned to the original dosage (from 5 to 10mg). Since she’s been aware of her decline in memory, she repeatedly says that she does not want to reach a point where she does not know who she is or cannot recognize family. Knowing my mother’s wishes and given her age, I think her physical decline, like losing weight, is less important than her mental decline.
My conundrum is her gerontologist wants greater weight gain before increasing the aricept back to 10mg. I realize it’s unclear the extent to which aricept stabilizes or slows the decline in memory. On the other hand, her short-term & intermediate memory have been declining at a faster rate since the dosage was decreased.
–Thank you for reading & any thoughts
Any idea why she lost weight? Appetite, metabolism, or ?
@ManhattanBoro the best medical evidence we have is that the risks of weight loss are higher than any benefit she might get from a higher Aricept dose. It might be that her decline in short term memory would be the same on 10 mg of Aricept. At her age, it doesn’t seem worth the battle.
But then again, I’m the one on the board who might be the biggest medication sceptic for those with dementia. We want so much for something to help or prevent it. But really, I’ve been in medicine for 36 years and there is nothing new as we don’t really know the cause or understand the disease process.
Supplement mother’s dietary with products like Ensure - about 220 calories a can, and it is easy for senior intake. They have flavors that make them taste pretty good. Maybe consult a dietician? Sounds like your mom is very well managed @ManhattanBoro . Sounds like a little tweaking. What does the doc think is negatively happening with going from 5 mg to 10 mg?
My mom’s mental decline probably was slowed by memory medication. She died fairly young (77) of dementia/Alzheimer’s. Body and mind both went about the same time. She was borderline for needing a pacemaker, but no as to not keep her body going longer than her mind.