Good Days-Bad Days

[lizzy66]

Hello,
My son just came down to visit my Mom. She is in a Assisted Living Facility. She does have dementia with Lewy Bodies. The first day that we went they visited while I did her laundry. She mentioned things to my son as to, I don't know why your Mom doesn't give me any money. I told my son that if she were to need anything, they will get it for her and add it to her bill at the end of the month. She forgets where she puts things anyway. I did give her $10. and she misplaced it. Maybe gave it to someone who knows, it doesn't really matter at this point. She also mentioned the fact that she never thought that she would be in a place like this. (ALF). My son understands her disease and he tried to explain to her that we never know what life is going to hand us. We just have to try to make the most of it. Then some other things that I won't go into.
Then we went up again yesterday. She was totally disoriented. The total opposite of the day prior. Nothing made sense when she was talking. She introduced my son to someone as her son. And when we left and she was saying goodbye to him she called him by another person name, but could not pick up on what it was. She also mention how dusty the baseboards are and she doesn't have baseboards not to mention that she is legally blind. Then she said, "And they need to come in and clean up that pile of dirt on the floor over there." Of course you don't question that. I will have to see how she is tomorrow, because she may have another UTI.
Today is his last day to go up for a visit before he heads back north. I am not going to go this time. He is having a hard time dealing with it also. I have told him about my visits with her, but he told me that he didn't fully understand until he saw it himself.
My stomach is getting more and more churned everytime I go see her. I just never expected to see her like this. I hate this disease. She is on an antidepressant and doesn't seem to have as many crying spells. So that is a good thing. They want to put her on Aricept as well, but she is a anti-meds person. She has had chronic A-Fib for 10 years without coumedin and she is still kicking.
I personally don't see her lasting much longer. I think that one night she will lie her head on her pillow and simply go to sleep and not wake up. I see such a drastic change in her in the past 3 months since she has changed her ALF's. Yes I know that change is very hard on the elderly. I hear that most people don't die of this disease but of something else like heart, stroke, or pneaumonia. She wants to go and be with my Dad who passed 4 years ago. I know that things are not getting any better and they won't and medicine won't bring her back to her old self again.
I just want her to have the diginity for however long she has. I have come to terms with her dying. Actually, she would be blessed if the lord took her. She knows she is not right and she can't change it and it drives her nuts.

Well, hope that all made sense to you. I really need a vacation. She used to tell me to go ahead and go away that she would be fine. When I told her the other day that I was going to be going north to see my grandchildren she didn't say anything, because I don't think that she wants me to go. Although, she didn't say don't go. I don't know, she has just really gone downhill and all I know is that I hate this disease as I am sure everyone else going through the same thing feels.
Thanks for the venting.

[petal*pusher]

Lizzie...in the beginning of Mom's disease...(actually, probably in the middle...since none of us wanted to admit the obvious changes we were seeing...) I curtailed most of my after-work activities. My Mother needed me after all...and the guilt I felt for agreeing with siblings to place her in an AL surely meant I owed her my time!!

The first couple years we all spent countless hours with her...and endured her frustrations, challenges, and tirades thinking it was our duty to do so. Soon, I was the only one of her 6 children to visit her...and that still holds true today.

We found that she was just as happy with a few dimes or quarters as with paper money! That was used for bingo games...but after a few weeks it wasn't even an issue.

Even in the beginning of this horrendous disease, Mom often got names mixed up...couldn't remember faces...and talked gibberish that only she seemed to understand. I still believe an Alzheimer's patient can absolutely understand everything that is said to them...their thought process and speech to answer is just so jumbled it often makes no sense. I would simply pick one distinguishable word and repeat it back to her in a tiny sentence and she seemed content that I understood.

When she is mentioning "baseboards" or things so extreme...I think that must be a tiny memory from the past slipping into her "right now reality".

I'm so sorry for each of us that are going thru this ordeal. I have learned much from observing Mom and those around her. It develops differently in each person...but the results are always the same.

Long ago...after trying to prove to myself I was the strong person who could endure whatever came my way...I realized no matter what I did...the grasp of this disease on Mom would still progress...............I had absolutely NO control of it! I started changing my visits to only once a week...(an hour drive each way)...resumed teaching my Adult Ed. classes...and started taking orders for wedding flowers again! (I'm a florist...also teach in a Horticulture class at a vocational school)

When my Oregon daughter wanted me to visit...I DID! When my Arizona sister wanted me to visit...I DID! When I felt like taking a weekend in the Upper Peninsula...I DID! At first, I paid extra for flight insurance...just in case. Now Mom has been in the facility for 9 years...I do not do that now.

My own method to follow Mom thru this journey has been to think of Alzheimer's as "an interesting disease"........subtle changes turn into huge ones...if I let it take control of ME too...I am just as much a victim as Mom.

I know this is long....but hope it can help a little........Pam

[Martha H]

Excellent advice! We do learn - it just takes longer for some ( like me) than for others.....

Love,

Martha