Alzheimer's from a 19 year old's perspective...

Okay- I should be going to bed. I'm tired and haven't been sleeping well. But I need to write some things down before I forget them.


I shared the following on the alz.org website.


Alzheimer's from the perspective of a 19 year old boy: (DS means "dear son")


DS is playing Guitar Hero in the family room. Mom walks in and sees DS with his fake guitar. "When did you learn to play guitar- no one told me!" DS: "It's a game Gma- this guitar is a controller to a game." Mom:"Oh okay."




Couple of days later DS is again playing Guitar Hero. Mom walks in and watches. Sees DS "playing the guitar" and notices the TV is on. (the game is shown on the screen) Looks at my son in amazement and says:"You are so talented! You can play the guitar and watch TV at the same time. I wish my dad was still alive to see this. You must have gotten his musical talent." DS (couldn't bring himself to tell her it was a game) Thanks Gma.


*********
Scene set up- DS playing an Xbox game while sitting on the couch in the family room. He has headphones on and is playing a combat game with friends who are in other cities. He plays this game a lot.


Mom wanders in stops and watches for awhile. Walks away- shaking her head. Comes back 5-10 minutes later. Watches awhile. leaves. Comes back. Taps DS on shoulder. "There sure doesn't seem to be much plot to this movie." DS: "Its a game GMA- we're having a battle." Mom: "Oh- OK."


The next day- Mom walks in as DS is playing the game again. Taps him on the shoulder- "Do you watch the same movie everyday?" DS-"Its a game GMA. Not a movie." Gma wanders off muttering-"Still doesn't have much plot."


**********
DS playing the same game at a later time. He has his headphones on and is talking to his friends via the headphones as he plays. Mom hears him talking and comes up behind him and taps him on the shoulder. "Who are you talking to?" DS: "Some friends I'm playing a game with."


Mom: "How can you play a game, watch a movie and talk to people on the phone at the same time?" DS: Starts to explain to her that the movie is a game, and he's wearing headphones that he can use to talk to his friends. Decides against it and say: "I'm talented Gma- you said so yourself." Mom pats him on the shoulder and says "yes you are. yes you are."


(In the back ground my father can be heard yelling "its a game! Its just a game! Leave the boy alone!")

**********
6 AM one morning as DS gets ready for work- making his lunch for the day. Mom wanders into the kitchen. She doesn't have her hearing aids in yet, so she can't really hear a thing.

Mom: Hi, I don't have my ears in yet. (Big smile)

Mom: What are you doing?


DS: Making my lunch.

Mom: What??

DS: Making my lunch.


Mom: When did you eat breakfast??
 DS: I'm packing a lunch to take to work.


Mom: What? You work today? Do you work today?


DS: Yes Gma.

Mom: Do you work outside?


DS: Yes, Gma. I work for a company that creates hybrid corn. I work cross pollinating the corn. Sometimes I work in the lab.

Mom: Your work is bad? I'm sorry.


Later that afternoon when he comes home from work- sweaty, sunburned and smelly...


Mom: Were you out fishing today?


DS: No Gma I was at work.


Mom: Do you work outside?


DS: Yes Gma- I work outside. I'm going to go take a shower.


Mom: You could hug your Gma.


DS: You don't want to hug me right now Gma- I stink!

The last two days...

The last two days have gone really well for the most part. Dad is so very happy to be here and he tells me that more than once a day. Mom has her ups and downs, but I really think she is doing quite well considering the changes that have taken place in her life.



Thursday and Friday she spent a lot of time with my daughter C and her two youngest, Little Bit and Hot Rod. Little Bit is 5 and is a real girly girl. Hot Rod is 3 and loves his boy stuff. Mom showed Bit how to say “I love you” when holding hands. (A hand squeeze) They did a lot of hand-holding and squeezing. Mom had a great time. And both nights she slept really well. I think the extra stimulation during the day is helping.


My daughter C talked to Mom about driving. Mom was complaining we won’t let her drive by herself. C told her we were worried that since she can’t hear and can’t use a telephone, if something happened or if she did get lost, she wouldn’t be able to get help. Mom seems to be remembering that and has brought it up a couple of times.


She is confused about some things. It’s odd how one day certain things are confusing to her and the next day they are just fine.


Last night she told me she couldn’t use her computer. The screen was black. I asked her if she had turned it off, and she looked at me as if I were nuts. So I went and checked, and sure enough it was off.


Then she couldn’t remember how to forward her email to someone else (sorry folks- I showed her how again!) She also didn’t remember what a disc was and that her medicine list was on a disc. She blames my redoing her computer. And that is fine- I can handle that!


There was a lot of confusion about medicine last night and she was very agitated because she must “pour” Dad’s meds on Saturday night. I’ve offered to help and she seemed ok with that.


But she was not okay with realizing at the time that she wasn’t remembering things. I told her she was just tired and tomorrow would be better.