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There are a couple of things I've been looking for for...years, it seems. One since 1994 and one since 2000. Of course, I didn't remember when I'd gotten them. They were both letters from my Aunt Patsy and were about Meme as she progressed down the road of Alzheimer's (or something very like it).

Because I don't ever want to lose these again, I'm going to transcribe them, here.

Maybe it'll give some of you who don't know what it's like having an Alzheimer's victim [sic] in the family an idea.

The first is a poem called "Remember Me" by Kenneth Chafin.

Remember Me


by Kenneth Chafin

When you forget your own address
and find yourself on strange streets, we'll sell your car,
and I'll drive you to all the places you need to go,
like you did for me when I was a child.

When you forget how to dress
and end up with three sweaters, two sets of panty hose, and a slip on over your dress,
I'll help you to look proper when you go out,
like you did for me when I was a child.

When the words on the menu don't match the pictures in your mind,
and you keep ordering things you won't eat,
then I'll order the food that I know you'll enjoy,
like you did for me when I was a child.

When finding your way at church is frightening,
I'll take you to your class and pick you up and let you sit with me in big church.
If the sermon seems long and you get sleepy,
I'll let you put your head on my shoulder,
like you did for me when I was a child.

When hot and cold faucets confuse you,
I'll put you in a tub of warm water and give you a bath,
like you did for me when I was a child.

When you forget who people are
and can't tell your family from total strangers,
I'll be your memory and tell you their names
like you did for me when I was a child.

When they're having a party for all the residents,
and you want to go but don't know what to wear,
I'll make you a costume that everyone will envy
like you did for me when I was a child.

When you forget who I am,
not just my name or my birthday, but that you ever had children,
then there isn't much I can do but go somewhere and cry,
like I sometimes did when I was a child.


That one never fails to make me cry, including now.

Secondly, this is a letter from 2000. I'm transcribing it and correcting a few minor spelling issues (use and suppose for used and supposed, mostly), but other than that, this is what my Aunt Patsy wrote four years ago. I opened it in the kitchen of my apartment in Duluth, read it, and cried. You might read it and not cry...but that's because you never knew the Meme I grew up with, who was always in charge, knew what was going on, what do do, when to do it, how to do it, and made sure we all did, too. Spelling errors are probably mine. I added a few footnotes, and those are entirely my own, just to clarify some stuff.


A Glimpse Into Meme's Life

...as she might tell it

December, 2000

My name is Sue Henderson from Eutaw, Alabama and if you ask how I am I will usually say, "I'm as mean as ever."

These days I live totally in the moment and the far away past. Most of the time I think my caregiver is Mary 1, my sister, although I call her Patsy off and on 2.

I am feeling a lot of confusion about my life right now although I am very certain about many things on a day to day basis. While I am sure about some things, I am still more lost than I used to be. What I think is real to me--real or not.

Every day, especially in the evenings, I am certain I must go home to see my mama because she'll worry about me and she needs my help. Although I think I can still drive, I don't see my car. When my caregiver tells me I'm not going home tonight, I am sure with my two feet I can walk, so I think I'll just go. I have no idea how far it is but that doesn't matter. I just know I have to go.

The people around me do not understand what I tell them but I know they (she) doesn't know everything.

I know I'm am not 88 years old because Mary is older than me. I believe I'm between 15-20 years old. I never think about being married and having eleven children. Patsy says I have lots of grandchildren and great grandchildren but I just look at her and wonder why she tells me these things.

I see children off and on around me and most of the time I have to correct them. Their mothers don't make them mind. I get mad with them a lot because I do not understand what they are doing. Sometimes I roll up a newspaper and try to swat them with it. I do like them when they show me the way to the bathroom or help me get out of the car. Sometimes I won't listen to what they tell me because I'm supposed to do what the lady with me tells me.

I cannot find where to go to eat or drink or where my clothes are or where I'm supposed to go to bed. If I need something, I just wait on someone else to wait on me. I don't ask for food but I seem to know meal times and I go back and forth to where I think the kitchen is. I also rush to the kitchen if someone goes in there to work. I may have just eaten a large meal but I don't remember that. My stomach doesn't tell my brain I have eaten. I don't know what I'm supposed to do lots of hours and I ask the lady of the house if she knows. I cannot work and do chores like I used to. I try for a long time to separate and fold clothes but I stop whenever I get confused and just roll things up in a pile. I dry dishes better than I wash them because I let the sink run over with water. I also miss the food on the plates and I don't remember to rinse them either. When my back starts to hurt I can't get finished so I just go sit down.

Patsy lets me sweep the floor sometimes but I see her redo it. I must miss some dirt and I can't use a dust pan. 3

My mind seems to be busy all the time and it's strange how I can't keep thoughts straight. I count road signs and identify the blue versus the greeen ones and I count cars and trees. I just don't undersand why everyone is in such a hurry all the time. When we park at a mall I always wonder how we'll get our car out because people are on both sides and in front of us.

A lot of roads we ride on I believe I have walked them off and on--some recently and some a good while ago. I do remember, though, that I walked them.

When I eat my meals, I eat better if I have a plate full of vegetables and meat. I don't think I've eaten if I get a hamburger and fries or soup and salad. I'm usually waiting for the real food three times a day. I even tell people sometimes that I haven't eaten all day.

I remove my dentures at night and rinse my mouth. Then the next morning if my "sister" doesn't remember to give them back to me I sit down to eat and go right on trying to chew. I do the best I can and think this is the way I'm supposed to do. I am still such a lady I cut my bread and take tiny bites. Sometimes I cut the small bites up that have been cut for me. I always eat orange or red things first like yams and carrots. I chew chicken better than beef and I drink so much it's hard to eat all the food. I don't like to drink a glass of water between meals though--a few sips are enough.

I can't seem to find my bed at night and I usually think I'm taking someone else's. I don't like striped sheets or images (vehicles, I call them) on the sheets. They scare me and I don't like that kinda mess. If I lie down 15-30 minutes and get a nap, I get up thinking night has passed and it's time to get up and work. When I go to the bathroom at night I shut all doors I go through. If I look for my bed, I don't know which door it's behind. I just go to the couch and sit and I think I'm in the bed there. Even if I get put back to bed 3 to 10 times a night, I seem to end up on the couch. Sometimes I'm happier to just stay there an hour or two.

I can get my shoes on if I see them but I don't like that lady to strip me naked to bathe me. If I've got a gown or anything on there's no need to redress. When I do get in the shower I usually think the water is too hot or cold because I am very sensitive to heat. Lukewarm to cool feels hot to me.

I do know I am supposed to stand up and pull when my clothes come from the bottom up but I have trouble pulling things over my head on and off. Patsy tries to pull my neck off.

I like colorful things to wear and often think they are so pretty. I always put cream on my face everyday like I've done for years but the other day I got confused. I put it all over my arms and filled my hair full, too The nice lady who does my hair is nice to me and she washed it two or three times to get most of it out. She had to leave a little. 4

In all conversations I think people are talking to me or about me and I believe the people on TV want me to do certain things I can't figure out how to do. I get sentences from several different places and combine them into a thought that doesn't always make sense to "Mary." I don't even know what I'm talking about either. Sometimes I do know some things I hear that I want no part of and I say so. I still hate to hear people call children "kids." They are not "kids." 5

If I hear music, I pat my foot and I sing along when I can. My voice and pitch are a little off. 6 I don't know why. I sing in church with the soloist and choirs although I'm in the congregation. I don't see any reason not to. I speak out in Sunday School class about anything I think. I even speak to the mannequins in the department stores and I'm insulted when they don't speak back to me. I am overly friendly and I tell people to move over when they're coming through. I don't know people are in line to pay and I just "toot toot" them away and say, "Here we are."

I'm amazed when the driver of the car stops in the road and lets other people go first. She tells me she stops for a red light and I thought she was just being thoughtful.

Lately I haven't been able to walk much without getting weak and fainty. I get to ride in a wheelchair so I can get around and see all over a store. I keep offering to push Patsy when she gets tired but she just won't let me push her.

When I see her work around the house I am reminded I need to go to my house and do some of the same things (like decorate for Christmas). In church I try to take notes and when I get words on top of each other, I just ask my "sister" to write down for me what the preacher says.

I don't like sitting in the back and if Patsy gets busy I just go by myself to a row. I find someone to sit with and talk to and I tell her to go do her thing and I'll do mine. Sometimes I find Bibles and purses and car keys on a bench and I gather them up for Patsy. One man was looking for his keys and luckily I told Patsy I had hers. She said they belonged to the man.

This is a strange time for me in my life. I sit and shut my eyes and rest and pray but I'm not always asleep. When I hear a phone conversation or people talking, I jump in to check out if things are getting settled and worked out.

I believe I'm strong physically and that I can do anything I think about. I could relax and be more comfortable if I could just talk to Katrina or Ross and my mama.

I still look pretty good and rise to the occasion to visit and be gracious around a group. 7 They don't always see how hard this void and emptiness I feel really is. I can't explain it myself--but I know it's there.

Every now and then I try to wander off to find the folks I need to see but she always watches me and brings me back. She doesn't know what I know but she thinks she does.

I just keep waiting and waiting for that day for her to understand and when she'll finally take me home.

Mama will be glad to see me.
1 Of the three sisters I can think of right now, two have or had Alzheimer's. Mary does not.

2 Most of the time, she has no idea who Patsy is, but they'll be sitting at the table eating, and suddenly Meme will say, "Patsy, pass the salt." It's almost like all the macros are still there in the brain, but the central processor has forgotten how to consciously access them.

3 I think the part of all this that made me cry was that even in this extreme when she's forgotten everything else, Meme still wants to help and be useful. And just can't.

4 Seems like I read about this. They start to do something sort of unconsciously because it's a habit...and then the brain kicks in and can't remember why they're doing it. So they just keep on doing it even though they aren't really sure why. She knew she had to put cream on. So she kept putting it on.

5 I'm not really sure where this hangup comes from, but it's always been there. She'd always say, "They're children, not goats!"

6 She always had a very good voice. So do most of my uncles, aunts, and cousins. I say 'most' because, occasionally, the inlaws' genes override the good, musical ones from Meme and Pawpaw.

7 This is the most amazing thing about Meme. No one knew she had a problem with her memory because she is incredibly adept at social graces. My mother noticed it before a lot of her own children because my mother lived in town with her and saw her more often. If you didn't spend more than 15 minutes talking to her, you would not know she had made dinner three times the night before and frozen it all because she kept forgetting she'd made dinner. Or paid the bills twice. Or gave money to salesmen for stuff she never got. Or sent people two gifts for their birthdays. Just little stuff. And this went on for years until her children would recognize/admit it was a problem. I think the trigger event was when she had agreed to host some church to-do at her house...and then forgot it. So people arrived and she had no idea why they were there. But, being the epitome of a good, Southern hostess, she made them at home and made sure they had refreshments...but it was obvious at that point to them that something wasn't right. She seemed distracted. Etc.



There.

Both of these have been reprinted without permission. I discovered the poem on a web site about Alzheimer's, so I didn't have to type it out.


Atheists Are People, Too  Antispam  

Comments

( 5 hisses — Hiss at me! )
elims
Oct. 4th, 2004 02:09 pm (UTC)
Amazing. Just quite simply... amazing. What an incredible insight!

(Deleted comment)
kaasirpent
Oct. 5th, 2004 03:40 pm (UTC)
One of my greatest fears is getting it.
(Deleted comment)
ungeschickte
Oct. 5th, 2004 08:01 pm (UTC)
Hi, we don't know each other, I just happened to read this from a friend's LJ links, and I hope you don't mind me posting.

My grandmother died of Alzheimer's back in 1987, when they didn't really understand much about the disease and could only truly diagnose it through an autopsy. She was one of the most influential people in my life, one of the truly "good" people I've ever personally known. When she got to the point where she didn't recognize me or my family, burned some of her most treasured possessions in a backyard bonfire, and took swings at my parents (she was a staunch believer in non-violence), it was incredibly painful; the memories of those moments haunt me to this day. The disease is incomprehensibly frightening for both its victims and the people around them who love them.

My point- thank you for posting these, even though they made me a bit teary-eyed. It's important to share them.
( 5 hisses — Hiss at me! )

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