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.

Gwen Richards; Alzheimer’s Disease Advocate and Blog Contributor

Our first contributor, Gwen Richards, was diagnosed with Early Onset Alzheimer’s Disease in November 2008 at the age of 54. Since receiving her diagnosis Gwen has been an active and valued Alzheimer’s Disease advocate on both the local and national level.  She serves on the National Alzheimer’s Association Early Stage Advisory Group as well as the Missouri State Alzheimer’s Taskforce.  Gwen lives with her husband in Kansas City, MO and has two adult daughters that live outside the metro area.  Gwen and her daughters e-mail and/or talk on the phone every day.  By doing so, they each know everyone is okay.

Recently, Kelly Jones, LMSW, Heart of America Community Outreach Coordinator, sat down with Gwen at her home in Kansas City, MO.  During the visit, Gwen shared details of the moment she received the Early-Onset Alzheimer’s Disease diagnosis.  What follows are Gwen’s words as recorded by Kelly:

I first went to my regular medical doctor with my concerns. He basically thought I was in need of more rest or something of that nature. Knowing that was not the case and having watched my mother and oldest brothers’ struggle and demise with the disease and their ultimate untimely deaths, I decided to contact one of my other siblings that had been diagnosed with the disease and asked for her doctor’s contact information.   I then contacted him and made an appointment.  On the day of my appointment, I left work and met my husband at the doctor’s office. 

The doctor performed a mini exam where he flashed cards and asked me to memorize the images.  A few minutes later he asked me to recite the images that I previously saw on the cards.  I was unable to do so. According to the doctor, a person with my age and education should have performed much better on the test.

My husband and I were at the doctor’s appointment together.  I remember the doctor asking me one of the memory-test questions; I can’t recall what it was, but it was something real simple, something I should have been able to answer and I absolutely did not know the answer to.  At that point, I looked over to my husband and he had pulled his cap down over his face, like this.  (Gwen mimes pulling a baseball hat down low, covering her eyes and half her face with her hand.)  He understood right then that something was wrong and by the end of the visit, the doctor said “Alzheimer’s”.   That may have been the moment [my husband] got it, but for me, the only thing the doctor’s test did was confirm what I already knew.  

My mother had the disease and passed away.  My oldest brother had the disease and passed away.  So when Alzheimer’s disease came knocking on my door, I knew it was that monster.  I understood the early signs; I currently have two other family members living with disease.  They can be subtle and people don’t always see them or want to see it, but I knew.  One big thing I first noticed: I was bringing work home because the noise in the office distracted me from completing [tasks].  That wasn’t normal for me. 

On the day that I received my diagnosis, I remember I drove straight from the doctor’s office to work.  I sat in my car in the parking lot and I read the piece of paper from the doctor that said “Alzheimer’s”.  And that was it!  I went inside the building of the company where I had worked for 25 years and told my boss, I have Alzheimer’s Disease and today is my last day.  He was real good about it, real understanding.  He said, Gwen, you do what you have to do to take care of yourself.  He told me to go ahead and live and enjoy my life.  I gathered some of my personal belongings and told a couple of co-workers that I was leaving.  I miss work, but being home is better for me now.  I’m comfortable here; no one is going to ask me for anything.  It’s safe.

What was ahead was frightening, yet I knew enough to search out the Alzheimer’s Association just as I had when my mother was diagnosed.  I felt that unlike the doctors, they could help me find purpose during the unexpected transition in my life.

I do worry about my husband.   That’s what bothers me the most, how [Alzheimer’s] affects my family:  my husband, my daughters, my grandchildren that I may never know.   My daughters will have to go through what [my siblings] and I went through with Mama.  I worry about my daughters and grandchildren getting Alzheimer’s. 

I’m a person who struggles with Alzheimer’s disease every day.

How do you cope with the stress associated with disease? 

Well, I attend an early stage support group at the Alzheimer’s Association and the people in that group, we support one another.  Even outside of group sometimes; we’ll e-mail and check in on one another.  And I write [about it] when I can.  I’m a writer, like my daughter.  We both love to write.   Both girls and I e-mail almost every day, but we don’t talk about Alzheimer’s all the time- just communicating with them helps.   I have on-line friends that also have Alzheimer’s disease.  One of my online friends and I check on each other daily; we chat about our lives and how we’re coping.  It helps and we understand each other even though we have never met and maybe never will.

What advice would you give a person who is experiencing early signs of memory loss?

Consult a doctor and make sure they listen to your concerns.

If the doctor dismisses your concerns, find another one; don’t waste your time.

Seek out the local Alzheimer’s Association chapter.  They’ll provide directions and all the tools necessary to cope.   I saw two doctors before I found one that believed me.   In my case, I didn’t look and behave like the stereotype of a person with dementia so it was challenging getting a diagnosis.  It’s important to connect with someone that will believe you.   The other thing I would add, if you find out [you’re memory loss is dementia], it’s good to have a purpose as life changes.   For me, I work at raising awareness, raising advocacy, but that can be frustrating at times.  I want to be able to do more.

THE MONSTER

 

By Gwen Richards

 

A monster came to visit me

I can’t remember when

He barged right in and didn’t ask

As if he were my friend.

 

He resides somewhere within my brain

And scatters things around

When I go to retrieve my thoughts

They are nowhere to be found.

 

Memories of yesterday

Some scattered to and fro

Where are my thoughts from yesterday?

Oh God, I do not know!

 

The monster sprinkles bits of fear

Where fear did not reside

He makes me sometimes feel ashamed

He makes me want to hide.

 

In my home where I am safe

And sheltered from the world

Surrounded by familiar things

Protected and secure

 

No one to care or even know

What lurks within my brain

Yeah, a monster lives within me

My mind he’s trying to claim.

Welcome to the Alzheimer’s Association Heart of America Chapter Early Stage blog!  Approximately monthly, we will invite an early stage advocate from our chapter to contribute to the blog.  We create this blog to provide a venue for people in the early stage of memory loss to share stories of how they live meaningful, full lives while coping with Alzheimer’s Disease and related disorders.  Our purpose is to:

• support and provide insight to individuals in the early stage of disease and their families and
• advocate for ending disease stigma, increasing early detection, expanding funding for research, and raising public awareness of memory loss.

We encourage readers to use our comment section to share your own insight, observations, and questions about Alzheimer’s disease and other dementias.

For more information about dementia and our chapter services, please visit our Heart of America Chapter website.