My 90-year-old mother is declining in memory and cognition rapidly. She still lives in her own townhome, with aides and relatives coming in almost every day to help her.
Sometimes she is like her old self, but more and more she has not just memory lapses, but more like rewrites of events, where she revises what took place and who said what to her (I am often the bad guy in the rewrites as I am the primary caregiver). She remembers the basic events, but in her mind changes what happened.
When she was in rehab from a fall recently, I provided a written, dated summary to her frequently of what had taken place each day, as she was particularly tangled as to timeline and events. Should I continue to do that for other events that she is now changing about in her mind, and sometimes denying things she did that caused her problems, like she has been repeatedly unplugging her phone, then blames me or her aides for it not working? Or should I just fix the phone, and other things, and spare the argument?
I set up a private messaging system for close, helpful, relatives to know what really took place, and what to watch for, as she will unload all these suspicions and anger, often about me ‘bossing’ her, on them, and they have no other way to know what she’s saying didn’t really happen the way she is telling it.
That is helpful to me and the rest of us, but how much should I try to document for her? I say ‘document’ because she wants things written down, and has a calendar with her constantly. How much should I try to give her as information, and how much is just futile to try to straighten out and document for her, especially when the truth might portray her in a bad light to herself?
While she is in rehab I would have her evaluated for 24/7 care. If its found this is what she needs, I would consider Assisted Living if she can afford it. You can sell her condo to pay for her care. But if Medicaid would be needed within the next 5 years, the Condo needs to sell at Market Value. All proceeds going towards her care.
Mom will not get better. Now is the time to make decisions for her. I hope u have a POA in place. Get a copy of that eval to show the friends and relatives that Mom can no longer live on her own.
As a chronic 'victim' she remembers exact things people said to her and she does not forgive, ever, nor forget.
My husband turned 69 on Valentine's Day. He was born during a huge snowstorm and when she had called DH's dad to come get her, he was coming off a 2 day stint as a firefighter, so he was exhausted. AND she had made him take her to the hospital 3 times already in false labor. He came and got her and STOPPED FOR A HAMBURGER. Left her in the car and sat down in the diner for 15 minutes. DH was born in the ER, as they barely made it.
Now, after 20 years, this should be a funny story. Nope. It's trotted out year after year as a reminder what a horrible, horrible person her DH was. (They divorced 33 years ago, so OK, get over it). She actually gets madder and madder as the years go by.
This is just one of literally HUNDREDS of issues she cannot let go. When DH and I were dating, were both in college and staying up late studying at his house b/c it was quieter than mine. She would stand at the top of the stairs and scream at him to "take her home already, she's been here since 7!" It would be, IDK, 10:30. She told DH a few weeks ago that this is the source of her inability to sleep, she maintains she has not slept (literally) for 46 years and it's MY FAULT. If Dh would divorce me, she could sleep.
There's some serious mental health issues going on--I couldn't begin to know what. In my book she's just the nastiest thing going. I quit talking to her almost a year ago and voila! Dh suddenly sees what a crazy person his mom is. Without me to take the anger and hatred---she dumps it all on him. I feel sorry for HIM, but he finally, finally GETS IT.
His mom will never be better. One dr said the best we can hope for is keeping her slightly sedated all the time. She won't take anything, but a Valium now and then, and I doubt that helps.
So sad--a whole life, really a very blessed life and all she can see is the horrible things she has gone through at the hands of others.
My father who passed away two years ago and who was divorced from her 40 years ago is still to blame for the misery of her life. Enough is enough already.
If your husband still wants his mother in his life, he needs to start deciding how that relationship is going to work. He does not have to tolerate her nastiness, negativity, and abuse. He does not have to be her dumping ground. I say it all the time that being elderly does not give a person a free pass to behave abusively to others. Your husband doesn't need that in his life and he should refuse to have it. You should too. Neither of you should have a moment of regret or doubt if you put her in a nursing home either. If she's alone, well some people deserve to be. It sounds to me like your MIL does.
If you're able to, just fix things like the phone and spare yourself the exhausting and useless arguments. That's a classic narcissist who can't possibly accept that something could also be their fault.
Then tell her that if she thinks you're "bossing" her and is going to tell anyone who will listen how terrible and insufferable you are, that it would be best for both of you if you no longer help her. Then stick to it. Tell your family members what's going on and refuse to help her with anything for a while. If you still want to continue doing for her then it has to be on your terms, not hers.
The minute she calls and starts complaining to you about her home aides or instigating something with you, hang up on her. If you're at her place and she starts up walk away.
This is the only way you will be able to maintain your own sanity in the caregiving situation. This is what I have to do with my mother and unfortunately for me we're in the same house. When she starts about someone taking some item of hers that she misplaced, or starts instigating something because she wants a fight, I walk away and completely ignore her. I refuse to play that game. I will not jump to attention because she wants something either, and I make her do for herself in the ways she's still able to. Whether she likes it or not. You should try some of this tough love in your situation too.
One of my favorite stories about him: Every so often, people (at either the ALF, rehab, hospital, etc.) would come up to me and say "Oh your father is such a WWII hero. I didn't know he was a Holocaust survivor!" I would burst out laughing and tell them "Um, no. He has never been to a concentration camp and he's not even Jewish." He would say anything that would get him sympathy/attention/accolades. The only charitable things he did throughout his life was when he would get public recognition, pats on the back, and could act like a big shot. We always knew when he was lying, could never keep his stories straight. I could fill a book! LOL
As to what light people's renditions of any of this nonsense gets people painted in, really, who cares? Too unimportant to discuss given all the trials and tribulations that honestly DO matter.
I always just said "maybe you just forgot where you put it" and started to search for the thing. Then we would laugh at where she had stuck it. No use in pointing out her error, I didn’t want her to feel bad.
Although after she had accuses the staff of taking things I brought the director back to help look. I warned Mom that accusing a staff member was very serious and might get someone fired. She stopped doing it after that.
He acts genuinely surprised when we get something working or find the missing object.
We haven’t gotten to the blaming us part yet, but I know it’s coming.
1. Your mother finds that her phone is not working.
2. This annoys her, because she wanted to make a call.
3. Being annoyed, she starts out on the wrong foot to solve the problem.
4. Unable to solve the problem, she becomes more frustrated.
5. Because she can't solve the problem, she assumes that somebody has done something to her phone to stop it working.
In none of this is her reaction actually unnatural or disproportionate.
All you have to consider is:
1. Her phone is not working when she wants to use it.
2. Is there any way to help her correct the problem that causes her phone not to work?
I like checklists myself, nice clear bright checklists on laminated paper. [The trouble is she's very unlikely to refer to it, but you never know - there could be a way or a place to display it...] e.g
**********************************************************
TO MAKE A CALL
1. Check the phone is plugged in.
2. Listen for dialling tone.
3. Dial the number.
WHEN YOU FINISH THE CALL
Press the red button on the key pad.
That's all.
You don't need to do anything else.
*********************************************
The general principle is this: that you do not need her acknowledgement of what has gone before. You don't have to make her see or agree that the problem was her own doing, and not someone else's mischief. Instead, you look for ways to make her routine mother-proof - yes, I know, good luck! - but at least it gives you a constructive approach to work with. And as for her complaints, acknowledge the problem (the phone didn't work), sympathise with her annoyance (that's a pity, I know you wanted to call Lily on her birthday), and then without comment do what you can to preempt a repeat of the issue.
Beautifully written for me...
What a blessing, Thank you
I have had the wonderful experience of raising a son who was diagnosed throughout the years with the best guesses of professionals at that specific time in history. As a result, his diagnoses (and medications) have changed many times...ADD, ADHD, Mild Mental Retardation, Moderate Mental Retardation, Bipolar(!), and then, at the age of 27, after a 2-month stint in the hospital and complete loss of memory, a competent neurologist who worked with Alzheimer patients informed us that his frontal lobe was underdeveloped and he scored very high on the autism spectrum. At 36, he is now properly diagnosed and with his care and medications now correct, he is amazing. I tell you this for one reason only. I have cared for a confused, loving, angry, aggressive, sweet, violent and very special person for much of his life. It was my training!!
I have now been the primary care giver, in our home, for my 90 year old mother with rapidly deteriorating dementia. She moved here at the beginning of the pandemic from Washington state. The remainder of my family is in Oregon and Washington, which leaves my husband and I no respite.
What I have found, is that I have had so much training for this time in my life. It is like my son's development now going backwards! She requires the same intense patience and understanding. The same slow explanations, over, over, and over again. I knew right from the beginning that phrases like, "I told you that yesterday.", or "Don't you remember, I've showed you that." would not only begin to feel disrespectful to her, but would make her shut down and not ask questions. I know who stories are inaccurate. I know she makes things up, But so does everyone else. I email her updated progress and significant changes to others in the family. I DO NOT spend any time trying to correct things she says, I just keep everyone up to date. They know to listen to me, not Mom, and it keeps everyone in a loving and caring place.
I now understand that I am uniquely experienced and qualified to be her caregiver and will do my best. No, it is not always fun. Yes, there are days I wish that I was not the one. That is the reason I joined Aging Care yesterday. I know that just like all of you, I will need that extra support and your experiences to see me through days ahead.
My best to all of you on your challenging paths. Love them the best you can. Never ever hurt them, even with your words. They do not deserve it, and in the rare case that they do...you should not be their caregiver.
None of the little things matter.
Let her think whatever she wants because she will anyway and neither one of ya'll have extra energy to use up arguing.
Juse learn to agree to disagree.
Yall both are just seeing and remembering things differently and
IT DOESN'T MATTER!
It's Better to have PEACE than to be RIGHT.
You really should set up Nest Cameras in her home which are easy enough to set up and you can watch her 24 7 on your phone or computer and play back and be able to show her what she really said and did.
People can come off Bossy when telling someone what to do, that's unavoidable.
You could try not to be so bossy...
I always ask my 96 yr old Dad not tell him and regarding food or drink, I'll give him a choice.
Put yourself in their shoes.
It's hard not being able to do what you use to do and it's hard having to need and depend on others to do for you because even tho they help you, it's never the way they would do it if they could do it.
Try to ask instead of tell and I assure you it'll go a long way.
Remember, at that age they deserve to die with as much happiness and dignity as possible.
Smile, Agree, Have a Pleasant Visit.
I understand it's not easy.
But it makes for a much nicer visit.
The only exceptions, are I was very firm about her not walking on the ice to the mailbox right after surgery for a broken hip! Aides and visitors bring in the mail. Likewise driving. Other than those, I consider she is still an adult who can make her own decisions, for good or ill, and her choice takes precedence over mine.
My concerns are NOT for his aging, hateful mother, they are for his sweet, sweet sister who is being forced to carry the entire load of CG for MIL b/c my Dh won't step up.
Yes, she is absolutely horrible to him and every time he stays longer than an hour they end up fighting--loud, nasty fights. They BOTH have to be right and that will never happen.
All I wanted him to do was to listen to me about my concerns for his sister who is going to MIL's 5-7 times a week to do EVERYTHING.
He said he'd call his sister, but he won't. As long as MIL isn't actively ill (and she never is!) he is not involved, nor does he care.
He'll never win an 'argument' with his mother, but he CAN do a load of laundry, clean a bathroom or vaccuum. Well, actually, he CAN'T, but he can learn.
I don't give a hoot about his mom, but I would hate to see my SIL get more stressed b/c her NPD mother just sucks the life out of everything.
That's just one tiny example of a story that got my hackles up for no good reason. I listen to stories about how she has to go to her mother's house & 'take care of the children', and come to my house to 'take care of her children' and I am her only 'child' who's now 63. It's endless. Trying to explain facts to my mother is like trying to light candles in the Wyoming wind. Impossible.
Spare yourself the time & aggravation of trying to present your mother a written list of the facts. Enter HER reality now & agree with it. If she says the sky is red, it's red. Whatever, who cares? Unless she's trying to ice skate to get the mail, just go along with her. And realize that living alone will likely become impossible in short order here unless someone is willing to stay with her 24/7. Dementia is just too tricky and she has way too many opportunities to kill herself in her own home at any given moment, between the kitchen, the bathroom, the chemicals under the sink, the front door..........the list is literally endless.
Wishing you the best of luck with a dreadful situation. Dementia just sucks for all of us.
Who for, mainly? Because, here's a chance to research and develop improvements in signage and instructions for dementia care environments, and boy! is there a market.
I can certainly sympathise with the frustrations involved, having built up my own collection of entirely ineffective material - tried and tested by my late mother, may she rest in peace with nobody tearing their hair out about her call button or her walking frame ever again.
But your mother continues to carry out quite a wide range of tasks. So which signs and checklists work for her, and why, and don't, and why not?
A little humor that helped me when he would insist something(fan, radio) was broken, I would say ' it's a good thing I'm a genius!' while plugging it back in!
Take care of you.