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?
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.
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
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.
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
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.
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