@ManhattanBoro , what does your brother who is there all the time think? There is a steady theme on this board that the one who is there all the time gets frustrated with second guessing from the ones that live far away and just visit once in a while.
(unrelated anecdote - My mother visited her mother at least once and usually twice a day when she had to go to a Nursing Home for Alzheimer’s. When my aunt and uncle called my grandmother, she said she never saw my mother. She wasn’t lying - she had Alzheimer’s, she just didn’t remember. The point is it’s hard for you to know what’s happening from a distance. Your brother sees things day to day.)
And what GTalum said - there are no good treatments, no matter how much we all want them.
@lookingforward - The gerontologist thought weight loss was side effect from aricept. That’s one of the potential side effects for that class of drug.
My mother’s internist thought her weight loss was less from aricept & more related to her age. There was the outside possibility of cancer, which was ruled out.
Her weight has increased from increased caloric intake, including daily supplement of Ensure. And, my brother’s been providing higher calorie to volume items, like macadamia nuts.
@GTalum - re: the risk from weight loss … that’s part of the dilemma … she’d prefer to die from a physical cause, like a stroke, which I then wonder whether weight loss would facilitate her wish. Needless to say, rationally to facilitate her wish makes sense, but emotionally it’s difficult to think along that path.
@MomofJandL - my brother & I agree…we deeply respect her & her wishes… we’ve been very fortunate in that he’s very good at managing the day-to-day & deflect potential conflicts … many would say he’s very zen … and, we’re also fortunate in that my mother has been quite docile, no unexpected outbursts
As for treatment, I’m not looking for nor expecting anything even mildly dramatic. At best, slow the mental decline and die from a physical cause. After all, she’s nearly 100 years old. If anyone lives to that age, I think one has earned or deserves to die from “natural causes.”
The thing that is awful to medical folks and patients and families is having “heroic measures” and feeding tubes and similar inserted which will insert nutrition but the person is not really there or may have questionable quality of life. This can make the dying process take many, many years and is agonizing for everyone. We have a friend who has had 5 years of feeding tube and being trapped in her body. H has an aunt who is not much different. Both are bed bound but “alive.” Neither has any hope of leaving their beds or speaking.
I am still moving slowly through the entire thread; I am about halfway through now. And by doing all this reading, I have realized that I am much better off than I thought I was, so it’s all worthwhile. My mother has “found her words” and is expressing herself again, thank goodness! She still searches for the word she needs, but the instances of not being able to find it are not as often.
I am also fortunate in that she willingly sold her condo and moved in with us nine years ago, and at that time she handed me her car keys; she always had a horrible sense of direction, and she knew she would never find her way around our new neighborhood and area. I have her finances under my control, and my brother (who thought what was hers was automatically his) has Alzheimer’s and no memory of the fact that she has bank accounts. If she needs aides more than the 8-hour days she has one now, there are a couple of good services I can call. So far, she goes to bed at 8:00 and is able to do for herself when she wakes up in the morning. I have a baby monitor in her bedroom, and a camera in her living room.
I am still mentally exhausted, but most days I can tell myself this is my new reality. At least I go to work and get away from it every day. My ‘job’ is just sitting in my office and signing papers/checks, and putting out fires that might crop up. I like the people who work for me, and they like me and each other, so we have fun when it’s slow.
My thoughts are with everybody who is on this thread. I pray for each of you as you go through the trials of taking care of the elderly toddlers we are blessed with.
I asked about the weight loss because one Aricept side effect can be diarrhea, which the elderly don’t tolerate well, leads to dehydration, which in turn affects organs and can cause confusion.
My grandmother had been healthy as a horse, all her life. Granted, she was 95+, so we can’t really know if it was simply her time. But I do have lingering questions about how that Rx may have affected her decline. Best wishes. It’s so hard.
There has never been any suggestion of testing or memory meds for my mother; is that unusual? Our doctor is a geriatric practitioner so not just a general internal medicine doctor. Mom was never the sharpest knife in the drawer, and I assumed that she was just going through some kind of normal decline of old age.
My mom’s cardiologist mentioned memory meds at her visit on Monday, but acknowledged that she didn’t have enough experience with them, or with the possible interaction with depression meds. She recommended my mom see a geriatric specialist and we are making an appointment with the doctor she suggested. It’s also clear to my sisters and me that when our mom is properly hydrated and eats regularly, she seems less confused and her memory is better. So, we’re trying to get her to fill a water bottle in the morning and keep it with her all day, as well as eat something within a reasonable time of getting up so her blood sugar doesn’t fluctuate so wildly. We’ll see. Doc also consolidated her meds so she only has to take them once a day and eliminated some - including the cholesterol meds.
I just got the shingles shot (as I am over 60 and my medical insurance covers) and I just noticed that all 4 MDs with our Family Practice group office had retired - it makes sense since they were all older than me (I knew when our MD retired and had a smooth transition with the new MD for us).
There are ways to have well cared for/medically attended to for the age seniors. Going to right kind of doc, learning what one can. It does help to see what kind of interventions would work or not work.
Gosh when one on this thread mentioned weight loss potentially due to memory medication dosage rate, failed to mention mom was close to 100 or approaching (anyone over 90/95 is typically going to have medical fragility).
Sometimes families have good genes - H’s does - more on one side than the other; starting with records we have. And this is prior to all the medical improvements made to assist all in living longer. GGGGF who died in 1917 at age 83. GGGM died in 1939 at age 73. Even grandparents on mother’s side - GF died in 1961 at age 74, and GM died in 1974 at age 83. Three great-aunts lived to 105, 106, and 107. GF lived to 96 (died in 1990).
Just missed seeing that @CountingDown until the next post - I honed in on the weight loss, as nothing much seemed to have been said about combating that, until another post
IDK how much to balance this all is with someone over 80, over 90, how individual differences affect one.
Almost anyone over 95 is going to be rather frail. Some with various medical conditions have a lot of issues dealing with things in their 50’s, 60’s, 70’s, etc - and some with very chronic issues much sooner.
My mom had a gerentologist who never prescribed any memory meds. He basically said keep her comfortable and content, if possible. He was wonderful, but too far away once she needed more frequent care. When she had a hospital and rehab stay, the nursing home doctor put her on aricept. She does fine on 5 mg but gets bad diarrhea on 10mg, so she’s back to 5. I can’t determine if it’s done any good since she drastically declined from a 5 day hospital stay and is far from the prior level of functioning.
Reading everyone’s struggles, I’m thinking of adding something to my medical directives : If I am no longer able to make decisions on my own, and if a treatment or medication makes no noticible improvement to my health or comfort after (30? 60? ) Days, please discontinue this treatment.
@dragonmom, my impression is that it’s a lot easier to refuse treatments than to stop them after they’ve been started. A couple of examples are feeding tubes and pacemakers. I think this is because there’s a psychological difference in many people’s minds between doing nothing, even if it leads to death; and doing something that leads to death. So I don’t know that I’d want to be that specific in the medical directive itself because I think it could tie the hands of my substitute decision makers and could result in me being kept alive for a long time when that would not have been my wish nor that of my family.
I’ve made it clear that, toward the end, they’re free to make the rational decision, not be beholden to either their fear of losing me or some silly thing I may have said in my dotage. There’s more, but you get the idea.
So many get to the end with their elders, then think they “have to” meet some wish or demand that doesn’t now make sense. My gm started saying she wanted to live to 108 (or was it 117?) I can’t see interpreting that as heroic measures.
The tricky thing is figuring out what is “near the end”. When mom was hospitalized, she didn’t open her eyes or talk for three days. When they asked me about any advance directives, I couldn’t even go there. (Up until 20 years ago, she wanted to live forever. Since my dad died, she has constantly talked about not wanting to be around anymore.) Her non-responsiveness made me wonder if she was near the end. But then the 4th day, she woke up! And knew who I was! Her dementia is worse, and now she needs much more care, but she does know us and enjoy moments each day.
I agree that it is tricky figuring out what is “too much” and how to guide our loved ones without making them feel that they will be KILLING you. My H has made it clear that he has no desire to have any feeding tubes or kept alive if he’s paralyzed in his body (we have a loved one who has been in this condition for 5 years and it’s taken a toll on her H and everyone who cares about her). Short of that, it’s just good to share with your loved ones things that you see that you WOULD and WOULD NOT want, and appoint a medical power of attorney who KNOWS what you say you would and would not want and will stand up to anyone who disagrees.
Understandably, the medical community tends to provide care if there is at least one noisy, squeaky wheel who wants the patient to have continued care, just because they don’t want lawsuits for not providing care. This can lead to a rather protracted “dying process,” which is draining for providers and loved ones alike.
Weight loss is more likely to cause physical disability with weakness and frailness which would decrease quality of life and I doubt would help any memory loss and may promote memory loss. You mentioned she was on other medications. If the goal is to allow her to die a natural death, it makes more sense to take away other medication rather than add something more. I’m sure there are those who disagree, but palliative care that promotes quality of life is my goal for my parents.
Speaking of my parents, we had a bit of a crisis yesterday. My dad hit the aide with a chair during one of his sun downing periods. The home care staff was upset, called security, and insisted we bring him to the ER and admitted for a psych evaluation. After many hours, the ER decided there was not precipitating medical conditions and felt no need for a psych evaluation for a man with typical dementia symptoms. Not sure where to go from here. This is the first time there has been any violence. Personally, I feel if there was a plan in place of what to do in anticipation and during his sun downing episodes.