Mom has stage 4 Alzheimer's but is otherwise high-functioning...so high that her friends don't believe the diagnosis, especially those that don't see her often. Some are telling her to 'fight back' and 'resist' the care I'm providing her, which will include moving her into an ALF this fall. Does anyone know how to deal with friends/family who deny the truth and then go the step further of getting in the way by telling your loved one that the doctor's and you are wrong and that he/she (the patient) should 'fight back'? Thanks in advance!
it took seemingly forever for doctors to diagnose my father. eventually doctors realized his decline was obviously alzheimers, but the delay in diagnosis was a delay in specific care. that was about 5 or 6 years ago. a lot has changed for the better. neurologists know much more of what to ask. they have far more studies under their belt. they can distinguish parkinsons from strokes and dementia much faster. this is critical.
for my mother, she was displaying signs of alzheimers but her symptoms have had much more to do with having strokes. she has recently regained many of the skills we had thought permanently lost. she's not all better. she's not going to be 45 again, or 75. but she's a hell of a lot better than she was six months ago.
Her neurologist was awesome. She was on task and to the point without ever making my mother feel rushed or patronized. she was very kind about delivering tests that would tell my mom's ability to draw, remember, conceive, etc.
But as a caregiver YOU MUST BE PRESENT. YOU MUST ADVOCATE EVERY STEP OF THE WAY. This is critical. Not all doctors are awesome. (sigh.)
Be sure to tell the neurologist what the condition of your loved one was a month ago and a year ago. Bring a list of all medications. If there has been a catscan recently, make sure the doctor gets the results of that (it will relieve your loved one of having to endure more procedure and relieve your medical bills too.)
All of the inconsistencies in behavior that everyone cited above should be mentioned to a neurologist and of course, to the primary physician.
And yes, the legal definitely should come first. Get power of attorney, get yourself on the checking account and ahold of all finances.
However, many states do not cover assisted living and that will eat your finances faster than anything. Keep your loved one as independent and as social for as long as possible. Make assisted living the last resort.
If your loved one is willing, adult day care is great. Look into services offered by community centers and what they offer for social activities and opportunities for seniors. This is critical.
Best to all.
They may be telling her to resist assisted living because of the aging that happens. Also many ALFs do not have great care despite the advertising. Many do. Some people thrive in ALFs, most last about two years. Your mother's friends/family have their own mythologies about the care your mother may receive and are dealing with their own terror of the situation. I would talk to them about the ALFs you've found and the ALF you have chosen. Invite them to see the place.
What does "high functioning" mean? Is it because they see her walking therefore she does not need care? Has she been officially diagnosed?
My father was pretty physically fit but his Alzheimer's had him deeply confused. Once he started wandering into the kitchen at night to turn on the stove, my mother decided she could no longer care for him. He was tall and too heavy for her to pick up if he fell. She visited him twice a day at length and advocated to the best of her ability.
My mother now has a lot of confusion due to dementia from strokes. She had put her self into an ALF but soon ran out of finances since the costs there escalate without much regulation. It was a place with an upbeat staff and residents that she had some bonding with but I still wish she had not moved in to the ALF. It was three hours away from me and so I could not possibly be there every day. After awhile, she lost her will to live there. She is back in an independent living situation after intense care from me that she did not receive in the ALF. Now her living situation suits her albeit much to my sacrifice of time and attention. (She should have had this apartment then and the ALF now.) But the sacrifice has paid off in positive bonding with my mom, recovery of her will and sense of humor and knowing that she is getting the care she deserves at the end of her life.
So there are two stories in one family with very different experiences around dementia and care. I would not have been able to care for my father in the way that I can care for my mother. I wish I could have.
Your mother's friends and family may have their own stories which are flag wavers for them. They are fueled by their own fears and although I'm certain they mean the best for your mother, they may not have the facts straight no matter what you've told them. If you are very clear about your mother's condition and what you are able to take on, if you have sought diagnosis from a good neurologist, etc., and you have presented this information to her her friends and other family who persist to "get in the way," then invite them to take over her care. Many of the residents at my mother's ALF did well because those friends and other family members showed up and visited. People who cared about their welfare were there with extra money, dinners, socializing, etc.
The residents who did not do well, had few visits and no advocates.
Even if your mother goes to an ALF, assure her friends and family that she can not be left alone there for it all to work.
Good luck. None of this is easy and everyone's story is different.
I am convinced more than ever now that she does have it, or else she has severe depression or both. She used to be real good at remembering birthdays, the family's as well as other's, but this month she couldn't remember the dates of her two grandchildren's birthdays. There's lots of things she doesn't remember, things that a person doesn't forget just because they're "old".
The doctor has her on citalopram for depression. She would be worse if she wasn't taking it but I keep wondering if there isn't another one that might make her be better than she is. All she wants to do is sit in her chair with her hands in her lap and stare at the TV or the floor (instead of the TV). She doesn't seem to really focus on it or really know what's happening on what she's watching. She is a very pathetic person who acts more like a zombie than a human. She has no interest in ANYTHING that I can tell. She never did have many interests except working outside or watching TV but now that she's not able to work outside, she doesn't even seem interested in just going out and sitting for awhile. I'm not an outdoor person myself and not physically able to do things like that and have more than enough inside to take care of, so I've hired a woman to pull weeds in the flower beds insteand of just letting them go to wrack and ruin. That doesn't seem to matter to her either. I practically had to make her go out and sit on the bench in the garden the woman was working on so she could tell her what to do. She used to like working on scrapbooks but hasn't done that lately. She is 92 years old and was never a sociable person (she tries to blame that on her parents not letting her do things when she was in high school). She couldn't care less about having company (including mine). She doesn't go to church any more since she fell. She says she doesn't go because she's not able to walk. Actually, that's just an excuse because she's able to walk good enough when she needs to go to the doctors. When someone from the church calls to see about her sometimes or the woman she rode to church with comes to visit once in a while, if the truth be told, I think she'd rather that they didn't call or visit. A lot of old people (including me) would just love to have someone to talk with but not her. Absolutely not. All she wants to do is sit in her chair with her hands in her lap.
She either can't or doesn't want to think about anything, including what to tell me to get for her at the store or what to watch when her regular programs aren't on. She doesn't like bologna but fixed a sandwich out of mine one day because it was the easiest thing to put together. Even when I fix her meals for her, she won't name something that would really be tasty to her, she just wants whatever is the easiest. She sits in her chair in front of the TV and sometimes watches things that she isn't the least bit interested in, when her regular shows aren't on, rather than THINK of something to pick out of her video collection or mine (a HUGE amount), something that she might enjoy watching. But maybe NOTHING is enjoyable to her any more.
Now when someone doesn't even care enough about picking something good to eat or to watch (if they like TV), and will watch or eat something they don't like, rather than pick something they would like, I don't need any medical training to know there is something very wrong with that person's mind.
I called her doctor today and made an appointment. I couldn't get one for another couple of weeks. I am going to try to tell her AGAIN how she is acting, if the doctor doesn't brush it off like she did before. If she does, do any of you have any suggestions what I should do? Her doctor is my doctor too so I don't want to do anything that would make her angry towards me.
We took Dad to the emergency room first and he checked of fine medically, so we had to check him in for psychiatric evaluation. He couldn't speak a coherant sentence. While he was in the psych ward for 8 days, my sister and I found a total dementia care locked-down assisted living facility. We knew that as he got better - back on meds, no beer, meals, sleeping at night - up during the day, he'd think he's fine and he'd be exit-seeking.
So, these friends, which includes my Dad's attorney, who wrote the Power of Attorney and Medical Advocate for my sister and I - advised my Dad he could revoke his Power of Attorney and Medical Advocate and leave the assisted living facility and go home. We're so angry we could scream!
Now our choice is to petition for guardianship and conservator, which he'll contest with the help of his friends. Our attorney advised expenses could reach $30,000 and no guarantee we'll win. Or, we can just leave him at home, a danger to himself and others - and with the help of his friends, he'll re-write his will so the girlfriend gets his money.
If you find out, let me know what I can do with these friends. I know what I'd like to do with (to) them.