We're 6 years into this saga (at least, maybe 7 or 8). I guess whenever I heard that dementia patients raged at their caregivers, I assumed they were sort of unintelligible or partly babbling. Boy was I uneducated.
I wish my mother fit clearly into any of the dementias so I could have some idea of what comes next and how much I should be sweating about the money.
I know - everyone does dementia different and that's aggravating. She has a little bit of the classic symptoms of Alzheimers, a bit Lewy, kinda-sorta vascular. We've had so many doctors appointments and referrals. Two and a half years ago, cognitive testers said "congratulations- no alzheimers!" I could NOT believe it.
Yesterday was only the 1st part of a new round of cognitive testing and now we have to wait 2 weeks for 2nd part, then a week or two after that for the sit-down talk with the psychologist. We have waited so long to find out what in the world is going on! I threw my hands up yesterday and said I am moving her to an assisted living facility with the option to move into the memory care section if they see a need for it, NO ARGUMENTS. I put the deposit down and started the paperwork. She moves in by April 21.
She can't take care of herself and that's that!
Well, she has been cussing me out ever since, telling me I have a lot of nerve deciding her future without trying to help her get well first. Vulgar, nasty stuff too. I can't sit here in her independent-living apartment and babysit her when I've got a job and a husband to get back to. She is too terrified to be alone, delusions 24hrs a day, hallucinations in the evening, and wanders the halls looking for help. I left to go for a walk for 45 minutes one day and when I got back she was throwing the contents of her purse and wallet all over the place, all upset. Quetiapine helps with hallucinations somewhat just by knocking her out, but only half the time. It does nothing for delusions.
I've been here since early January when her delusions and hallucinations went into overdrive, and now it's March 20. Yes, my sister does 2 days a week, and yes I am paying someone $200 tomorrow to sit on her couch for 6 hours while I go to an appointment.
How can she be demented enough to be delusional and say she hopes my private parts fall off when I run around with all the men, BUT she can talk intelligently to a stranger about the education system, understand the newspaper, run the washer and dryer, feed herself, and go to the bathroom on her own?
AT LEAST SIX YEARS of family and friends saying "mom ain't right". Started with personality change, anger, inability to plan, hallucinations and delusions all in the first year. Now she's 79. No tremor. No shuffle. No incontinence.
Excuse me being blunt, but why isn't she dumber? Or not recognizing people?
Hallucinatuons may be more in line with Lewy Body Dementia... personality changes & lack of filter with FTL. People can have mixed dementia symptioms & have other health conditions going on too.
I hope the 2nd part of the medical testing gives you some better answers.
As to a dx or not, your Mother cannot manage in independant living, she needs a higher level of supervision & care. She may be angry about this change. But as you say, there is no other choice. She lacks insight to this.
This is what it is.
Keep us updated if it helps you.
Take breaks & know that this too will end.
For example husband's LO helps the high school and college volunteers with their math homework, they cannot follow a simple multi stage instructions to get an egg but they can still teach kids calculus, and still knows how to count cards.
Some people hold on to long term memories to the very end. Had seen some cases that no matter how bad it go forgetting where the bathroom was, berated staff she always recognized her son no matter how he changed his appearance.
Yet my mom is a mash potato mess up in her head.
Just get her settled and leave asap. Love ya ma, but I've gotta go now. Try not to get SO caught up in this situation that you'll ruin your own life in the process. Dementia is a no win situation for ALL concerned. Remember you didn't cause this, you can't cure it, nor can you control it.
Best of luck to you.
The people at the AL I'm moving her to have promised they will give her lots of attention and love her like family. It's in a rural area so there's not so much employee turnover.
I will drop in once or twice a week so she can have her target practice, and then I'll go dancing back out.
Dementia folks do say some vulgar stuff. I remember my father in-law accused my ex husband of having an affair with this mother. We knew something was off even though he had not been tested. 👺
I've watched them showtime. They can act really good for awhile especially in front of company or physicians. However, when it is just the carer and the person, it's a different scenario. The stubborness, meaness, yelling and screaming comes into play. It seems like another switch goes off and you are dealing with another person. Dementia is a strange illness. You can try redirecting and maybe toileting if needed. Sometimes offering a snack or a drink of some kind can help. If this doesn't calm the person down, make sure they are safe, and leave the room to get a breather. This is the time I would do laundry or take out the trash.
Try to remain calm keeping your voice low. Nice music helps too. Try switching on to a nice radio station. I remember reading about music helping. When I did my clinicals at a nursing home over thirty something years ago, a nurse was passing out medication to an older man. She told him, you always have nice music. The music was nice, and he loved it.
Heck, if the music doesn't help the loved one, it would definitely put us in a good mood. I listen to rock when I want to get out of a depressive funk.
A good support group helps. Altzheimer's Association has a hotline you can call when we get overwhelmed. We do get overwhelmed.
Hopefully, your mom is in memory care, so they can work with her there. Go back to your life as soon as possible.
She's always been a pill.
No one has the answers to your questions. It’s impossible for us to know what is going on with your mom.
I stopped by to say that I am thrilled that you have decided to place your mom.
I am sorry that she has mistreated you so badly.
Honestly, I feel like it’s par for the course for them to treat people who offer the most help the worst. Maybe, it’s because they feel closest and safest with them. Who knows?
Anyway, good for you for getting this process started! Wishing you all the best.
My nephew is having a similar issue , where his Mom’s symptoms are not really following what is expected for her Vascular Dementia per MRI. It stinks no matter what anyway .
I’m sorry you told Mom so soon that she was moving . I think I would have waited closer to moving day if possible .
Hang in there .
"Yesterday was only the 1st part of a new round of cognitive testing and now we have to wait 2 weeks for 2nd part, then a week or two after that for the sit-down talk with the psychologist. We have waited so long to find out what in the world is going on! I threw my hands up yesterday and said I am moving her to an assisted living facility with the option to move into the memory care section if they see a need for it, NO ARGUMENTS. I put the deposit down and started the paperwork. She moves in by April 21.
She can't take care of herself and that's that!"
Your approach was one of anger, and you acted before the completion of testing.
A much better approach would have been to complete the testing, then sit with MD and Social worker to explain that she needs 24/7 care now, and that you cannot take this on.
GENTLY.
WITH LOVE AND SYMPATHY. With mutual tears, I would think. With mutual grief.
I am surprised that her response to what you did is a surprise to you.
Did you think that she would take this loss happily? Something like "Oh, I understand dear. Go ahead and do what you think best for me. And go ahead in the middle of all this testing. Because I trust you to have my best interests at heart. You are in charge of everything now."
Is that the sort of gentle reply and response you expected?
If so, I guess the answer in all of this is not to expect "happy-and-grateful-all-the-time when someone has dementia. Instead, expect the unexpected.
BlueHeron, you were pretty blunt with your Mom. I can appreciate blunt when the other person is capable of fighting back. But in this instance, with your Mom about to lose EVERYTHING including her own power of decision for her own life? Might I suggest gentleness. I know you are both overwhelmed. But you aren't demented. I know you are burnt out. But you aren't demented and losing EVERYTHING that makes you who you are, including control over your own life.
AS far as WHY our elders get mean and even obscene with US, the family, when they play coy and cute with others will forever be a bafflement to me.
My late MIL had a mouth like a sailor the few months before she died. She'd always had that 'side' to her, but showed it to very few. Once her dementia got the better of her, she'd let it rip with anybody/everybody.
Honestly, if she hadn't been so foul at the end she could have died in her home, which was what she wanted. My poor SIL--the things my MIL could and would say were over the top.
There's nothing new that the ALF hasn't seen. Don't take it personally when she rages at someone (esp if that's you). It's the disease.
She's a bird.
Her venom is reserved for me. Sweet as candy to others who visit.
I’ve long suspected that her dementia doesn’t just diminish some skills/tasks but also the motivation or comprehension of the reason to perform them. Was she unable to recall how to use the washing machine or was it feigned helplessness to get me to take on yet another chore? Had she lost her ability to work the stove or was she tired of cooking? Why walk when there’s a perfectly good wheelchair? (she decided when she’d never walk again) Why feed herself when someone else can feed her? She used to rage that I didn’t do enough for her and this is kind of a continuation. As if the mental capacity for “Why?” declined as much or more than the “How?” It’s so baffling and so frustrating.
Like your mother, I think my mom was done with serving herself meals and loading the dishwasher. She has me and my sister to do the waitressing. She sure doesn't mind nagging me to clean up the kitchen!
It's the fluent, clear speech with advanced vocabulary that surprises me the most. My great-aunt Annie babbled when she had dementia, nearly the whole time.
ALZ does not effect the brain like other Dementias. So, seems tests were looking for ALZ not other Dementias. The ones mainly talked about here are Vascular, Frontal Lobe and Lewy Body but there are others. Tremors and shuffle I have never heard of being associated with Dementia unless Parkinson's involved or another neurological problem. The doctors she is seeing are Neurologists?
I have read that Lewy Body often presents with tremor and/or shuffling gait, but not every time.
Everyone would like to know exactly what is going on with their parent’s health. This can take quite a while to sort out.
You have clearly seen that your parent is not safe and have decided to place them in a facility.
Consider yourself one step ahead of the game because you have chosen to place your mom now instead of waiting to have more information. Good job! 👏
It’s so important to know your limits. You are doing all that you can possibly do for your mom while maintaining your own sanity and wellbeing.
Blue , I’m not saying your mother has this . It’s just another example of many reasons that can cause strange behavior . It can take time to sort and figure it out , by ruling out other things first .
What a wonderful doctor to continue running tests in order to determine what the issue was.
My mum has vascular dementia, from having had a severe stroke (it was a bleed at the back of the brain) 13 years ago. She was diagnosed about 2 years ago. However, it was difficult to tell because the stroke had already caused difficulties with memory and damaged the part of the brain that governs appetite and eating.
Mum's illness is completely up and down. On her down days, Mum is barely aware: on her good days, you wouldn't be aware that she has dementia.
Looking into it, the brain's neurological pathways can sometimes change, so that there are times when something that has been forgotten can suddenly come back for a while. At least, that's my understanding of what I read. And that's what I've seen in my mum.
Despite having significant brain damage, my mum can have times of surprising lucidity. She often beats me and her husband when we watch a quiz show on TV (a daily activity) and can sometimes explain the meaning of words that I don't know - I'm an English teacher! However, when she wants to express her needs or wants, or explain something, she cannot find the words. Mum can't make decisions and she no longer has any will power to force herself to eat.
Recently, she accused her step-daughter of trying to poison her. She will tell me to "piss off" if she doesn't want to do what I'm helping her to do, and my step-sister told me that Mum has also started to swear at her husband for the same reason.
They can't take it with a pinch of salt like I can. My mum worked with the elderly while I was growing up, and I have seen her calmly deal with those suffering from dementia so many times.
It's the illness, not the person. We have to be strong and make the tough decisions because they can't. We have to remember the person they once were. Because they can't.
You are making sure that your mom is getting the care she needs, well done. Don't feel bad about anything you are doing, it's a hard road and it's been years, it's time that mom loses the control that keeps her from getting the appropriate care and keeps you imprisoned.
I pray that the AL spoils her and she gets the kind of care that let's you get your life back.
She always prided herself on her excellent writing and math abilities, but when the year 2001 rolled around she would write the date as 2000-1. She was clearly struggling cognitively in some ways, but the main feature was the meanness.
Once, she punched my mother (her only child) in the stomach. She had never been physically violent before the dementia.
It's a very difficult situation. She always recognized people, unlike my other grandmother with dementia. She only lost her intelligence when she ended up being heavily medicated her for her violent outbursts.
I think it is interesting, as KNance pointed out, that dementia is much like schizophrenia. For years I thought grandma had the latter and was misdiagnosed with dementia.