Learning to Live with Alzheimer’s Disease

Today’s contributor, David Partridge, 72, was diagnosed with dementia several years ago.  David grew up in New Hampshire.  His father was a bobcat hunter and a licensed wilderness guide and his mother was a nurse.  He and his siblings spent their childhood exploring the outdoors, before David joined the Navy at 18.  After being discharged at 25, David returned to New Hampshire where his match-making mother threw a party and invited three single women; one would become his wife, Sandy Partridge.  As a young couple, Sandy and David moved to Missouri, near where David’s sister lived.  Before retiring he worked as a maintenance supervisor in plumbing, heating, and refrigeration.  

A few years ago, David and Sandy moved to Mulberry, Kansas.  Their daughter is their neighbor and also assists the couple in navigating David’s early stage Alzheimer’s disease.

Kelly Jones, Heart of America Community Outreach Coordinator, interviewed David for the Early Stage blog.  During the interview, David shared the struggles of accepting an Alzheimer’s disease diagnosis, the frustrations of giving up his driver’s license due to memory loss symptoms, and learning to move from a life of independence to a life of interdependence. 

What follows are David’s words as recorded by Kelly.

I wanted to go where it is warmer so I left New Hampshire as a young man.  Now if I could be anywhere I’d be in New Hampshire, but Fulton, Missouri would be fine too. That’s where we lived before here. Three years ago, we decided to move closer to my daughter in Kansas.  I left my church and I left my friends.  I’m not big on making new friends so…sometimes I miss Fulton.  I miss that life.

Sandy and I moved I guess because I got diagnosed with Alzheimer’s disease.  The first time I got diagnosed was in Columbia, Missouri.  They said that I had some kind of dementia and they called it Alzheimer’s disease.   At the time, I thought they were just grasping at straws, you know. Then some time passed and I moved to Kansas.  I went down and saw a psychiatrist in Fort Scott and he also diagnosed me as having Alzheimer disease. I don’t know if I believe it now.  I really have a hard time accepting the fact, but when I don’t accept it, it just turns into an ongoing argument with Sandy, with my doctors, with myself.  I know I forget things, but sometimes I wonder if it’s to the extent that I have to have a hard & fast diagnosis. 

I remember, I went in and I took a test.  They asked me to remember a few things from a half hour ago and then they had me draw pictures and a few other things. When I got done, I thought, “No problem I passed with flying colors.”   And I had everything wrong.   When the lady gave me the results, I was floored.  I didn’t think there was a thing wrong with me.  I could remember things.  I did things.  Matter of fact, I thought this visit to the psychiatrist in Fort Scott would open the door to get my [driver’s] license back, but it didn’t.  I don’t know what happened?  I guess I didn’t do things in a timely manner…I don’t know what it was but they confirmed my diagnosis was Alzheimer’s disease.  Now since then, we’ve done a lot of talking about vascular dementia, but I guess it doesn’t matter; a rose by any other name is still a rose. 

When I hear vascular dementia, I get this feeling, I don’t have an incurable disease- well, I guess I still do, but not Alzheimer’s disease.  Not that.  I’ve read books on Alzheimer’s disease and they scared the living crap out of me.  I read one that was written by a guy who right up until he kind of lost it…so I don’t want to do it.  I don’t want help.  I’m scared I’ll do something stupid.  I don’t know what I’ll do if I get that way.

I lost my drivers license because of the Alzheimer’s diagnosis and now Sandy drives me around.  It’s one of the hardest things I’ve ever done in my life giving up my driver’s license.  I didn’t want to do it at all.  I just loved driving and doing things by myself.  Before I could just go somewhere and now it’s at the whim of someone else.  Some days this driving thing is very hard, I can’t tell you.  I get very frustrated and I think it makes me worse.

Matter fact yesterday, a lady came here for some reason.  She was somebody who was going to help with the house work through the Area Agency on Aging and I thought she was you when I saw her.  I thought she was you from the Alzheimer’s Association and then for the rest of the day I had a hard time understanding what that was all about [the person cleaning from the Area Agency on Aging].  It’s like, sometimes, I have a hard time following what people are saying about whatever and I just don’t understand what they are trying to say.  Since all this memory loss stuff, I have this thing about people talking about me.  When two people talk and I’m there; I figure they’re talking about me. I just have this feeling that I’m misunderstood and people are talking about me behind my back and that’s frustrating.    

I was in the hospital last month for my shoulder and I was having a hard time coming out of it, I don’t know if it was the memory loss or what, but I could hear them talking and all I could make out was nursing home, nursing home and I couldn’t talk to anyone.  When I came out of it, I was scared and I kept asking are you going to send me to a nursing home, are you going to send me to a nursing home?  And she said no we don’t have to.  I don’t want to be, I just don’t want to…well, there are some people who go through this and they don’t have a clue what’s going on.  That’s hard on the people who take care of you and for the person it’s happening to- it’s very confusing.

Is it helpful to hear that other people have said similar things to me? That I frequently hear that people with early stage Alzheimer’s sometimes have the feeling people are talking about them?

Do you really?  Yes, it helps that I’m not the only one paranoid, I suppose.  That it’s normal?  My daughter always plays game with me.  She’ll say, Well, we told you that.  It kind of knocks me out of it…  Boy, I used to have in-depth conversations.  I don’t anymore.  I can’t.  I couldn’t possibly [follow] anything really in-depth, I don’t think. 

Isn’t this an in-depth conversation right now? 

Yeah, but that’s because you understand me and my memory…and you don’t understand me because I’m your husband, you understand me because you know I have dementia and I think that kind of cuts through a lot of the problems. 

So it helps if the person having the conversation understands the memory loss?

Yes, but really it helps that they are not emotionally involved.  You know sometimes, it’s like- [when Sandy says] I told you about it and you know I did!  And somewhere inside the person that’s telling you that, they have to believe it and on the other hand, me- I’m just thinking I’m getting verbally attacked. 

You mentioned yesterday was a rough day?

Yep, it was. Started out kind of bad and just kept on going.

What does a good day look like?

A good day looks like?  Well, I have a good time when I go outside and work in the shed and I feel pretty good about the whole thing.  I get out as much as I can.  I don’t think Alzheimer’s is going to go away.  The way they talk about it it’s always going to be there.  If I had something wrong with me and I could cure it or take care of it, I could take that but, this is never ending.  I still have a hard time accepting it.  I go along with it because it makes it better for everyone concerned, but you have to be true to yourself you know?  I think probably some people with Alzheimer’s disease to have the same thing happen to them.  The hardest thing about it is when you’re first diagnosed.  I still hold out hope that someone will come along and test me and say you know there isn’t anything wrong with you? I know that’s not going to happen- everyone’s got a preconceived idea anyway.  I want you to test me and see if I have Alzheimer’s disease- right away they probably think, oh he’s probably got AD.  If I could just drive & didn’t have to ask Sandy.

Does your driving situation cause stress for you and Sandy? 

I’ll tell you what, we’re driving down the road and I say, Let’s stop here.  And she says, I’m not going to stop here and she keeps going.  Or when we’re driving around town, I’ll say- Listen, why don’t you drop me off at the Home Depot and I’ll just walk around?  She’ll say, No, you have to stay with me.  So it gets to be this kind of back and forth thing.  Like, my church is important to me so I’ll say, Let’s go to church. And she’ll say, Not now… So I’m at the point where I’m doing what she wants me to do and I don’t think she understands it, but if she did what I wanted to do once in a while I’d be a lot happier.  Driving someone around is too emotionally involved.  

I told [Amy, his Alzheimer’s Association Dementia Care Specialist], You know how it feels?  I don’t think I have Alzheimer’s disease.  And she said, Okay.  What do you think you have? And I said, I don’t know.  If you call it by some other name maybe I’ll feel better about it, you know.  Vascular dementia lets me off the hook somehow?  I don’t have an incurable disease- well, I guess I still do, but not Alzheimer’s disease.  I’ve read books on Alzheimer’s disease and they scared the living crap out of me.  I read one that was written by a guy who [wrote] right up until he kinda lost it so I don’t want to do it [Alzheimer’s].  I don’t want help.  I’m scared I’ll do something stupid.  I don’t know what I’ll do if I get that way. 

Sounds like the dementia has caused some depression? 

Yes.  It really has.  I keep thinking, I feel down about things and I can’t help it.  I cannot stop.  I know they say depression, everybody has it, but most everybody gets out of it.  I keep going deeper and deeper and I don’t know where I was.  I don’t think it’s because I did anything at all; I think that’s just the way it was.  Oh, I was fully aware that I had been diagnosed.  When they diagnosed me down in Fort Scott, I was mad at Sandy.  I thought they were conspiring against me.  It didn’t make any sense that they would, but I just thought- They were trying to conspire against me to make me something I don’t want to be. 

When did you have enough insight to know they’re not conspiring against you, that something was wrong with your brain?

(Laughs) Well, I don’t know that there is!  Sometimes you can look inside and say that’s the way it is and I’ve got to live this way. It takes the pressure off and then you don’t have to worry about it anymore.  If I knew more people with dementia and I was sitting there talking to them, I might not be quite so worried because I’d think Well, they really get this.  It’s been a long time, I’ve been at this.  It’s not easy to understand unless you have it. 

Do you feel like people only think about your dementia? 

Yes.  [They think], I have to protect him because he might walk into traffic or something, but that’s not so.  I have enough insight to know not to do that stuff.  I go out in the shed and work with my power tools, but I’m very careful about it.   I make sure everything is just right.  That’s just the way it is.  Sometimes when I talk to people, I’m thinking- They’re talking to me like I have dementia again.  Somehow it makes me feel left out or something.  It’s like when they pick sides for grade school teams and the guy who’s left out, he’s in a lot of trouble.  No one wants to play with him, like the guy who has Alzheimer’s disease…It’s not going to get better is it? 

It’s true that the memory loss does not get better, David.  That’s true, but it doesn’t mean when you have a down slide, like you did in December when you were recovering in the hospital that you can’t come back to where you are now. 

Does it all wind up in the same place?  I can’t see the future, right?  I’m 72.  How old are you? 

I’m 38.  What advice would you give me about the future? 

Well, it would be: Trust in God and don’t let anybody talk you out of it.  That’s powerful.

Do you still retain trust in God, David?

Yes, I do.  Yes, I do.  More so sometimes then others…God is just a little closer sometimes than others, I think.  I can see the end there and can see that things progress along that way, you know? I’d like to be able to say, Oh to hell with it and not worry anymore.  I do that with Sandy.  I say,  Boy oh boy, would you stop worrying about things?  But when it comes to my own health, I can’t stop worrying about it and well, that’s just the way it is.  I have to get some answers. 

What advice do you have for other people with early stage memory loss?  

Keep busy.  Like, I write about my childhood, about my Dad, who was a bobcat hunter.  He was an interesting guy.  I like thinking about that, working on that.   And [like I said] I work in my shed and I build birdhouses.  That’s a good thing.

Short URL for this post: http://tmblr.co/ZTG2-wFgy1JP