How to let my LO know she has Alzheimer's - Mood over Memory

salguod

Hello all!

This is my 1st time posting to this group. My wife and I are caregivers for my 87 YO mother who was diagnosed last year (September '20) with Alz. I know she knows she has a memory problem, but we don't say she has alz as Mom is a worrier; and I don't want to make her anxious. One thing that has stuck with us after speaking Dr. that conducted the interview last year was "Mood over Memory". My wife and I have tried to use that as our mantra when interacting with Mom. Not sure if it would do any good to mention to her that she has Alz?

Additionally, I have scheduled an upcoming memory appt. for her in December to see where she is now since a baseline was established last year. However, I am not sure if it matters that much to put Mom through this again, and she goes into worry mode. It may be a moot point considering there is no magic pill. 

Thanks for listening!

Arrowhead

 Most dementia patients don’t take the news very well. Like my wife, they refuse to accept it. When that is the case it’s best not to bring it up. Giving her the memory test is a good idea. It will give you an idea on how her disease is progressing. My wife was diagnosed in July 2016. She received her first Mini Mental Status Examination in January 2019 and she scored 15 of 30. In January 2020 she scored 13 of 30. In January of this year her score was 8 of 30. During the course of this struggle I hope you find ways of dealing with it that work out well for you and her. 

DawnOfANewDay

We never mention it to my mom.  If she says something about her memory we acknowledge the comment in a way that doesn't admit to the problem.   If she says,"My memory is so bad. What happened?"  We just say, "We're here to help you.  You can ask us anything."  

The more you do it, the easier it becomes to do the work around.  

She will ask, "Do you think I have Old Timers?"  (That is what she calls Alzheimer's).   I say we are all getting older.  I can't believe that I am 55.  How did that happen?

I she asks "Is my sister dead?  Why didn't I go to her funeral?"  I will say, "Were you thinking about Aunt Joan?  I remember when we used to go swimming in her pool.  It was the biggest pool I had ever seen."

Years ago, her doctor tried to explain to her that she had Alzheimer's and the minute we closed the office door, my mom said that the doctor was crazy and there was nothing wrong with her.  

We now just try to maintain  "confused but pleasant."  

terei

IMO it serves no purpose to tell your LO she has Alzheimer’s.   If my mom asked about her condition I told her she had ‘memory problems’.   The word itself can strike fear into anyone, if they even remember it.

Whatever kept my mom calm + content was what I told her...nothing else.  I never even brought up her condition.  If she asked about it, I would answer briefly with memory issues + change the subject.

Rescue mom

As others said, there’s really no point in telling her Alzheimer’s. “Mood over memory” is good, I have not heard that before.

As for the test, I have mixed feelings. On one hand, it’s  interesting to get a baseline, or track progression. But on the other, the tests may have little to do with how she really functions—which is more important, IMO. 

For example, my DH could reproduce any drawing—including that darn clock—on the test perfectly. But he is utterly unable to do anything for himself, to read and comprehend, to have a conversation, so many other things. 

Those—things done and seen in the course of daily life—seem more important to me, than what a test may show. (I hope that makes sense). 

If testing caused any problems, or was unpleasant for her, I’d say no. My DH —who is very docile—doesn’t seem to mind, so we do. Not sure for how long, though.

jfkoc

I would not tell  her nor would I have anymore memory testing done. You know how she is already. You know how the disease is progressing and since the speed of decline is  not predictable I can see no reason to test.

The word dementia was never mentioned in my home. I did, however, on occasion blame a lapse on the brain "snapies" not working at the moment.ds

Carmella Lee

My mom’s doctor advised us against telling her. She said it would only make her angry and encouraged us to go along with her stories and try not to contradict her. It was hard for me at first, but I’m starting to become better at changing the subject.

loveskitties

IMHO I don't see any up side to bringing up this disease with our LO.  May cause more issues if it upsets her.

I agree with other posters that memory tests do not accurately judge our LO's abilities in daily life.  Drawing the picture of a clock does not mean that they will know what day it is or even if it is time for bed or to get up.

The baseline you are looking for is in your own dealings with your LO.  Keep a journal of behaviors and abilities on good days and bad.  You will determine more that way than any memory test.

This disease does not present consistent behaviors or abilities.   One day or one hour my dad may seem to have all abilities appropriate for his age, then suddenly he will not know that he doesn't need two t-shirts or doesn't have to wear a coat and hat when it is hot outside.  That is what makes it so very difficult to be the caregiver.

salguod

Thank you all for your input and suggestions. From those posts, talking with my brothers, and conducting further research, I agree with you all about not bringing up any terms such as Alz or dementia. 

And in regards to the upcoming appointment, I am going to cancel it. However, I do like the idea of journaling Mom's "journey" so to speak!

Thanks Again,
salguod 

harshedbuzz

I'm of two minds on the appointments with a memory specialist.

On one hand, her day-to-day caregivers have a better sense of where she is in the disease process from living with her than any expert. And they can be stressful. Dad hated his neurology appointments, but adored his geripsych who did a lot of the same tests.

That said, there are certain situations where an on-going relationship with a specialist could be critical. If she had a springing POA or you need to establish guardianship, you might need conformation from a medical expert to act on her behalf. Some people with dementia develop anxiety that makes their lives miserable and their care traumatic to all involved; a specialist could help with medication to dial that back and improve quality of life for all involved.

HB

suze0450

Hello friends,  Long time since I have written a post. I guess I am at my wits end. After almost 5 years of caring for my dad it has been pretty evident of how to proceed until now. Dad lives alone as he is very strong willed and easy to anger  man that has insisted on staying at home alone in "his house". I totally wanted to  continue for as along as possible.  In June he suffered a heat stroke from sitting in the sun /his favorite pastime . It was pretty stressful  and nasty ordeal. We took him into the ER and after he got some fluids into him he became agitated and wanted to leave. We were able to calm him for a bit. His agitation just built and he pulled all the ivs about him started cussing profanities and wanted his things and to get him dressed and leave. Which we did after a very nasty nurse helped him yank the ivs out telling him "you aren't the only patient we have here. I told her he has dementia. Poor treatment. He was being extremely difficult. This summer has been very challenging. He tried to start a stashed away lawn mower and injured his shoulder and had to go back to the ER.. It was extremely hot and Smokey this year also very miserable. I have had to be so proactive about fluids meds taking foods and watching him I have had zero time for myself . Mind you I have been on steady for 5 years. He is probably a 5 /6 in dementia. I have seen the progression rapidly over this year. I have been taking meals, shopping, paying bills cleaning and just living his life for him. He still thinks he is shopping, cooking banking, whatever. He stopped cooking two years ago and banking 5 years ago. It is all dropping off. Now he is not showering. He does make his bed every morning and coffee for himself and dress. I am now having to show him how to run his washing machine but just gave up and started doing that too. I come over at 10ish to make sure he has a snack and water. Mostly my timing is just sh--. He is never hungry at the times I am bringing him his lunch or dinner. So I end up having to go back  more times to ensure he at least eats a bite or so. I am becoming very frustrated. He really need to go to al or mc asap. He refuses the idea. I have talked to some facilities . We are isolated and aren't many options here. I am crashing from exhaustion and do not know how to proceed. He is going to be 88 in January has stage 3/4 ckf ,diabetes can't hear a lick or comprehend even with his hearing aide> That is going to be very challenging also. I need help of what to do. I have no life. He does some funds to go to make the transition. His personality will be the make or break. I need tips idea and help.I had to caregive my 15 yo dog with tcc cancer this summer . My house is a mess trying to do it all.

Space within

  I agree with the others on not labeling it.  

IMO, We naturally want to be healthy or perfect humans as in "right"...and when someone states you are ill - perhaps we all try to deny it and cover it up. With dementia or any mental illness for that matter, the person then may naturally try to cover it up, or deny it...which could intensify the isolation .

My mom recently passed away and looking back I wish I would have been able to give her more space and meet her where she was, especially during the early stages.. .

I imagine being told by the only people you know or think you know that you pretty much don't know what's going on can invoke such strong feelings of disconnect, fear. and panic.   

SO VERY LOVING what DawnoftheDay wrote.   Yes bring up memories or times they may remember.   Possibly converse about things she remembers and try and gather information from her on what she is experiencing.      

We all desire the same things as humans...love, connection, support, lots of hugs or gentle reassurance that you are there for each other.