Hi everyone.
I am a caretaker for my grandparents in their late 80s.
My grandmother has dementia. She is constantly asking why she no longer has a computer, or why her cell phone changed to a simplified version.
She was neglecting to pay bills, falling prey to scams such as "proprietary" health news subscriptions, "miracle cures" etc.
It breaks my heart because the computer was a link to the outside world for her and I don't know what to tell her on days when her dementia is good and she is self-aware and truly mystified as to why her world has changed. Though other days she is not aware that any such changes have been implemented.
Does anyone have any insight on how to communicate to her gently that she has been having some slight changes in memory so that I can diffuse some of the understandable anger and resentment that her belongings were taken, and her responsibilities transitioned?
I ask because on days that she's sharp and self-aware, she feels like there's a maligned collusion toward her to push her into isolation which is not the case, I assure you, and I'm the only one in the family who cares to try and make an effort to soften the blow of that realization.
Anything helps! Thank you!
Tell her the computer has a virus and needs to be repaired, but you don't have time to take it in at the moment.
I actually like the idea of putting safety measures on it, like you do with a child.
The results from this meeting and her MRI, she has Front Temporal dementia. I thought she was in denial, but I have now learned that she also suffers from Anosognosia, so she doesn't realize that she has a problem.
No sense is saying anything to her about it, she doesn't get it. I just try and remain patient and roll with it.
Having said that, she doesn't remember 2 hours later.
Research "therapeutic Fibs".
world ( I called that her wack-a-do-days) if she asked for it I told her remember it needed to be repaired so I brought it to the repairman. it will be back soon.
with my mom I played cards, watched tv game shows, even did puzzles when she was good. we laughed and cried together. I learned to love her more than I ever did before.
I also told mom the truth that she had a disease called dementia and that is why her mind wonders more than other days. no matter what you tell her she will forget it. with dementia you either tell them the same thing over and over again or you suck it up and sometimes some people just blow up .
you know that her health is declining and it breaks your heart. there is nothing you can do about it except to talk, laugh and love each other as much as possible until the end. she will remember the love and laughter she had with you and you will remember the love you got back.....
I know I did it for years with both of my parents sick at the same time. they died three weeks apart. I do not regret one minute of it.....the memories will be there forever.........
I have been really struggling with the decision of whether or not to move my Aunt closer to me.
I realized last night that by moving her from California to Montana with me, I could at least make her remaining years beautiful. No one else seems to understand.
Your post gives me hope!
AD too but this time around is completely different.
In any case, there are people who recognize that they're having memory issues, and others that will make excuses for their deficits rather than accept even a medical diagnosis.
I wish you luck. It is much easier if the person is willing to acknowledge the issue and accept treatment, if only to delay for a while a further decline.
It's nice to try to be kind, but, easing people into them having dementia is often not possible. They often refuse to accept it and even if you tell them, they are scared, confused and not able to process it. And, finally, they will forget it all eventually. I'd try to line up the help you're going to need now. It can happen suddenly and it's very stressful.
I hope you are doing what you're doing on good authority. Are you your grandparents' POA? How's your grandfather's state of health?
Given your complex and challenging family background, I think anyone on the forum would suggest you start researching continuing care facilities where your grandparents can live together, and at the same time research what funding and support they're eligible for. Doing this alone, even if there weren't so many emotional pitfalls, would be - an awful lot to ask of one young person.
that I fear getting Alzheimer’s and I’m sure dad did also, so I just gave it a different name for him.
As someone mentioned, it is incomprehensible how they can't think clearly at one moment and can make a rational excuse for their actions at another moment.
Experiences that have intrigued me: 1) Mom was unable to do ADLs by herself, and was incontinent. I wanted to lay flat on her back because she had abdominal pain. She could not do it. Finally, I said, "We don't need to do this!" She replied, "You are angry with me" (They are very good at picking up emotional cues). Me: "No, I just wish you could do what I ask." Her: "You know I would if I could"
2) Several years later and declined significantly, She asked my father if he was her father. Being HOH, he asked "What?" I quickly interjected that it was time to go to her Memory care facility. As we walked to the car she said "You know, I miss my Dad. I miss everything. Everything is such a mess!"
3) Mom is now mostly nonverbal, and sleeps most of the time. My Dad said in front of her "Too bad she has no idea what is going on." I told him that I do not agree with that. I believe there are times she is aware, and a good chance it is more often than I realize. I looked at her and tears had weld up in her eyes. When Dad took her hand she squeezed his hand as hard as she could and growled at him. I am sure she was trying to tell him she was angry for what he had said. When he kissed her good-bye, she giggled like a school girl. So do not write her off at any point.
I found the book 'Still Alice' very true to what I was experiencing at the time. It left me in a funk for several weeks, but I am glad I read it.
Look for the blessings in this long difficult journey.
My dad refuses to believe it and when family has said that I told them that he has some dementia I was called a fning liar. I just let it go.
When I get questions from the dementia I just say I don't know, I can check into it or I make noises of acknowledgement and promptly forget the grumping.
Learning to not answer a question is challenging, learning to tell lies is challenging and seeing an elder deteriorate right before our eyes is challenging. It is a brutal disease for everyone involved.
Can I recommend that you start getting resources together for the time that you can no longer care for her in home. It will help you feel less overwhelmed, this is one situation where knowledge is power.
Edit: there are different kinds of dementia and different stages to each and they are not mutually exclusive, she could have more than one kind. The only thing anyone really knows is that it will get worse and just when you think that you have something figured out, the disease progresses and you are at ground zero again. Tons of helpful information here but I think that we would mostly all agree that it is an individual journey and you just have to try until you find what works best today, because tomorrow could be different. It is really hard in the beginning because they are themselves so often that you wonder if you are the one losing your mind.
I've seen a lot of ads for the Grandpad. Is that something you think she could use rather than a computer?
Don't try to tell her. Either she won't remember or she'll be angry you suggested it.
For example, "where's my computer" ---"Grandma did you get enough to eat for lunch? "
"Why does my cellphone look like this?" ---"Grandma is trashday on monday?"
Sometimes a white lie can get you there faster but it depends what you're comfortable with. "Where's my computer?" ----"It broke, so I took it to be fixed"
"why's my cellphone look like this?"----"The plan was cheaper"
But there's a larger issue for you, which is what you realistically want to/are able to do for them. Dementia/cognitive and physical/health issues will just keep increasing, and often there will be decline on every front, almost daily as they lose abilities to do what they used to do. IMO you can help them get transitioned into a care community (like assisted living or a nursing home) but you will first need to have a very clear picture of what their finances are. If you do not have durable Power of Attorney for them, and if they are resistant to revealing this info to you (which is quite common), your ability to help them will be limited and needlessly difficult.
Is your grandfather in better cognitive condition than your grandmother? If so, you can try to have the conversation with them that you can't be their caregiver and they need to have a plan in place. You can offer to help with certain things (and you will need to put up boundaries for this). Not sure how this conversation will go. If they both seem to have cognitive issues, and you do not have PoA for either of them, there is really only one other pathway for them and that is for you to get social services in to assess them for in-home services and allow the county to eventually take guardianship of them so that they will get taken care of. Even if they were willing to compensate you, it wouldn't be enough and it is a very stressful job that ties you 3 together for a long time without much career/financial reward and the risk of the stress having a negative health impact on you. Please read some of the thousands of posts on this forum under Caregiver Burnout from the children and grandchildren of loved ones for whom they tried to provide care.
If your grandparents have some financial means (more than just their social security checks) and at least one of them has all their mind, you could help them look into arranging a professional Power of Attorney (usually an attorney) to take care of their needs.
Caregiving often begins in small increments: some yardwork here, some grocery shopping there, bringing a meal, driving them places, finding out the bills aren't being paid, one of them falls and breaks a hip -- and before you know it you are heroically and desperately trying to juggle flaming balls but catching fire as you do. don't envy you having to make whatever decision you settle upon, but you are too young to take this fully upon yourself alone. Blessings!
As for her questions, this is where the therapeutic fib comes in: gee grandma, we had to take the computer in to get fixed and it isn't ready yet. The phone came with the new phone plan, it is supposed to be easier to work and was a much better deal.... The idea is to give whatever answer sounds reasonable and will satisfy her for a while, but of course she will keep asking because she won't remember.