Alzheimer's: One Woman's Personal Story

I was the primary caregiver for my grandmother for ten years. She was diagnosed in 1981 and my dad lived with her for three years, until he passed away and the mantle of care for her was passed to me. I moved my family into her house and we lived with her until she passed away in 1994. 

I read a statistic, which I'm sorry I don't have the source for; that the average Alzheimer's person lives eight years after diagnosis. So I think my grandmother living thirteen years in our combined care is pretty good.

There were some very hard times during our ten years, but, as with most things in life I've found, the hard things that one deals with only serve to make one stronger, and I would have to say that was true of my family. 

I have five children who are all grown and out on their own, all married with families of their own and doing quite well.  They were all in a hurry to "leave the nest", possibly due to our caregiving situation, but they nonetheless benefited in ways I'm sure that they are unaware of. 

They are all strong people of character, who are able to face life as it comes and deal with it in the best way possible.  I think taking care of my Grandmother helped give them that and I thank God that He kept His promise to take care of things entrusted to Him so well.

To begin with, after my Dad passed away, I began going over to my Gran's (I named her "Grannan" when I was three years old and she was known as Gran or Grannan from that day forward) to help her with paying her bills and cleaning and simple household things. 

She was a very independent woman and there was no thought of her not being able to fend for herself in her own home alone, at least in her mind that is.

At the time she was 74 years old. She seemed quite lucid and competent to most people and only those who knew her well noticed anything out of the ordinary with her.  I noticed that she would forget things now and then, but attributed that to normal aging. 

You see, it wasn't until three years later that I found out that she had been diagnosed with Alzheimer's.  And that was a "gotcha" moment for me when her doctor, after a scheduled checkup came to me and said, "...well she seems to be progressing normally..." and at the confused look on my face added, “You do know that she was diagnosed with Alzheimer's don't you?" At the time I had no idea there was such a thing as "Alzheimer's"!  Suffice to say, I was to learn much on the subject!

My first piece of advice for anyone who has Alzheimer's and the family members of someone afflicted with it is to make sure that all members of the family understand that, especially if they might possibly end up in a care giving situation!

Anyway, back to the story...

After a month or so of going over to Gran's to help her out, she told me that she had noticed that the neighbors were signaling to each other at night with their porch lights and asked if I would buy her a gun.  I was to find out later that paranoia-like symptoms are common in Alzheimer's patients, actually more like a general mistrust of the motives of others than true paranoia I think. 

Regardless, I didn't buy her a gun because she didn't see well and I didn't want her mistaking me for one of her untrustworthy neighbors!  But my suspicions that something more than "normal aging" might be going on were aroused.  I became aware that she was becoming afraid of being alone when she suggested, as she would never have done in the past, that we move in with her. 

Fortunately, in our financial situation, this was a good idea for all concerned and with a little remodeling; we were able to accommodate all of us in her home, which is how we lived for the next ten years.

This leads to my second piece of advice.  The person who is diagnosed with Alzheimer's must have the courage to face it, and the consequences of it, and make disposition of his or her assets before they become incompetent to do so. 

Smarter people than me know how to make living wills and instruments of power of attorney, etc., but my advice is that these arrangements are an absolute "must" for the person and the family of the Alzheimer's patient.

Seek competent legal help at the earliest possible opportunity.  Once the disease has progressed, even just a little in some cases, the patient will no longer trust in their ability to make good decisions, will possibly distrust those in the family trying to help, and will therefore make no decisions regarding appropriate plans of action, until the disease makes the decisions for them.  This is usually detrimental to all concerned.

Ten years of living with someone gives so many memories and stories, but I'll try to just give you highlights that I believe might help others who are struggling with this disease.  I'll also list some of the obvious things, or at least they are obvious to me because I lived with it for so long, but may not be as obvious to others just learning about it.

Gran was constantly trying to "go home".  One time she actually was able to get out the door, walk to the bus stop and actually ride the bus downtown before the driver realized that her searching her purse was due to a lack of money for the fare!  He then called dispatch when he was unable to get cogent answers to his questions from her and they sent a van to bring her back home. 

They knew where home was because my Mom had the brilliant idea of writing her address on the flap of her purse, which she carried with her for the entire ten years that we lived with her! 

I don't know if this is common, but if there is something that the Alzheimer's person is attached to in that way, make sure that their address and phone number are attached to it because they won't be able to tell anyone where they live in a very short time after diagnosis.

Next, if someone is in a care giving situation, it is imperative that they have a good support group to talk with about it.  In my case, I had a large family and that was enough, but depression among caregivers is a constant battle that must be dealt with.  You'll be unable to be of any use to the Alzheimer's person if you fall to depression.

The disease is insidious.  I remember one time early on, Gran was watching TV and started having a conversation with the people on the screen.  You wouldn't think this type of dementia to be abnormal for an Alzheimer's person, but in the early stages, they don't really know how sick they are.

Gran realized that she was having a conversation with the TV and, startled, looked around to see if anyone had noticed.  She was so embarrassed when she saw that I had been close enough to see it.  Later on, she regularly had long conversations with the TV, but was no longer able to tell that she was
doing it.

I remember the time that she was able to convince a well-meaning social worker that she needed to be able to move out to an assisted living apartment, that she was totally able to fend for herself. The social worker was basically poo-pooing everything that I said about this until I turned to Gran and asked her what year it was.  It felt like a mean thing to do, but Gran was unable to answer the question. 

What struck me at the time was how Gran was so able to "hold it together" if needed, to suit whatever purpose she was working on.  Later on, this was not the case, but in the early days, it was, eerie.

I remember thinking how terribly tragic it was, when Gran came to me with her purse, crying, and telling me that she couldn't find the one hundred dollar bill that she'd had.  I thought, how terrible a disease that would first convince a very poor, sweet little old lady that she had one hundred dollars, that she never had, only to dash her hopes by making her think that she'd lost it somewhere.  Remember the advice I gave above about the
caregiver needing to deal with depression? 

One of the first signs that I had that Gran's dementia wasn't "normal aging" was the day that I was in the living room watching TV and she came out of her room rather agitated and asked me why I was allowing "that"?  When I asked her what "I was allowing", she said, "...don't you see?  Out in the driveway!  Those Eskimos are killing that man!"  I had her show me at the window, but they were "no longer" there and she said they "...must have moved on", and went back to her room. 

It was shortly thereafter that the doctor told me about her Alzheimer's and I started doing research to find out what it was.

One of the biggest reliefs to me and I'm sure my family, was the day that Alzheimer's took away her ability to unlock the screen door at the front of the house.  Strange the things that are huge in the eyes of the caregiver, but we no longer had to "have eyes in the back of our heads" watching her, making sure that she didn't "escape" to "go home". 

By the way, "home" was a small town she had lived in when she was in her late teens and early twenties.  She had lived in the house we were living in for forty years, but she needed to "go home". 

We used a toddler gate across the entrance to the kitchen, which worked well to keep her away from dangerous heat sources like the stove.  Later on, she would stand at the entrance to the kitchen, or at the screen door and shake them in an attempt to get through, so we still had to keep an eye out, but it was much easier than it had been before.

Another piece of advice is to not bother arguing with an Alzheimer's person about things.  Even if they agree with you, the argument is short term memory and will be forgotten quickly.  So obviously, it's unimportant.

Over time, the Alzheimer's person is going to forget everything.  Gran had a hearing aid that ended up in the glass of water for her dentures next to her bed once too many times, and then she "obstinately" wouldn't put her dentures in her mouth and was therefore no longer able to eat anything but soft foods. 

These are just the day-to-day concerns of the caregiver, but people contemplating doing it need to know things like this will need to be dealt with.

Gran passed away in her sleep after battling pneumonia, which is often the way Alzheimer's patients go. 

For the last two months she was given her medications, dressed, spoon fed her breakfast, bundled up in warm blankets and carried to a window in the living room where she could watch the world and the birds she always loved each day. 

She couldn't walk and had to be carried everywhere.  I would feed her lunch the same way and then dinner, but that required waking her up to feed her as she slept most of the time. In the evening I would carry her to her bed, which was a mattress on the floor because I didn't want her to hurt herself falling out of a raised bed.

This was our routine for the last two months of her life.  I'm sure that had we had any money we could have purchased things like wheelchairs and such to make things easier, but this was our situation and we simply dealt with it as we needed to.  We were desperately poor.

This has gone long and I guarantee there are more things I could say.  But before I forget, I wanted to mention that I have purposely not mentioned the town where this all occurred, the town where Gran wanted to "go home" to or any other details about my family.  The reason for this is not the obvious interest in our privacy as you may suspect.  It is actually out of respect for the wonderful Grannan that I loved and admired. 

I choose to remember the person who loved me and taught me to play Scrabble, but would never “just let me win".  Who took my brother and me camping multiple times when we were kids. Who took my brother and me in to live with her and my Grandad when my parents were trying to make a go of it in another city for a year. Who was always there to talk with when I needed advice, and was usually right about what to do.  Who was self-educated and extremely well-read.  Who taught me to love Sci-Fi and made sure that I had a copy of Dune to read on the plane when I was headed to boot camp and four years in the Army in 1972.

Yes, she got sick in her later years, and she handled that with much of the grace that she handled her whole life with and it was my honor to help her in her last years.

I have written this in the hope that it truly helps someone or I wouldn't have opened all those (many quite painful) "rooms of memory" that have been closed for such a long time now. My Grannan was a wonderful part of most of my life and I wish her to be remembered in that way.