Alzheimer's Reading Room: Learning How to Use Alzheimer's World to Your Advantage

Alzheimer's Reading Room: Learning How to Use Alzheimer's World to Your Advantage

As always Bob DeMarco hits the nail on the head.  So many times I get a positive response from Betty when I approach the playing field with a positive attitude.  Often times less explanation is better!

Raymond  -   Brett Eldredge


I work down at Ashberry Hills
Minimum wage, but it pays the bills
Cleaning floors and leading hymns on Sunday

Katherine Davis, room 303
Sweetest soul you ever could meet
I bring her morning coffee everyday

Chorus:
She calls me Raymond
She thinks I'm her son
Tells me get washed up for supper
before your daddy gets home
She goes on about the weather
how she can't believe it's already 1943
She calls me Raymond, and that's all right by me

She talks about clothes on the line in the summer air
Christmas morning and Thanksgiving prayer
Stories of a family that I never had
Sometimes I find myself wishing I'd been there

Chorus:
When she calls me Raymond
She thinks I'm her son
Tells me get washed up for supper
before your daddy gets home
She goes on about the weather
how she can't believe it's already 1943
She calls me Raymond, and that's all right by me

There's a small white cross in Arlington
Reads Raymond Davis '71
Until she can see his face again
I'm gonna fill in the best I can

Chorus:
When she calls me Raymond
She thinks I'm her son
Tells me get washed up for supper
before your daddy gets home
She goes on about the weather
how she can't believe it's already 1943
She calls me Raymond, and that's all right by me
She calls me Raymond, and that's all right by me

Today is Sunday and the schedule includes having Betty here for cards and dinner. It is also the day when I try to gather some of her clothes to wash, which is never an easy task as Betty is sure that she has worn her clothes only once or twice even if it is more like seven times.  One of the most difficult tasks in talking to someone with dementia is the tone and phrase you use to get them to do something or not do something.   Arguments always ensue if there is the slightest bit of tone that may make Betty feel "less than capable" so we try very hard to use the terms that have had success.  The problem occurs when she gets defensive because then "THE SPIN" as we like to call it can leave the whole attempt spiraling out of control.  


We have built a semi-concrete schedule to get important things done, such as hair washing and showering.  We sneak in washing the sheets and clothes trying for the nonchalant grab.  I do the shopping in such a way as I arrive with a cloth bag and put things away as fast as possible.  The pills have evolved into me filling the pill box a few days at a time and keeping all of them here at my house with her vitamins.


This schedule works for us for now but we realize we need to take a further step and get someone to come into Betty's home at least once a day to help her with dinner and pill taking.  Why we have so much difficulty moving to this is beyond me.  We talk the talk but it ends there.  We talk about going to a caregiver support group but again, all talk.  There is this exhaustion that takes over so that when you are not with Betty you want to veg on the couch and not think, move, or even do something that would be beneficial.


I am hoping that today will be a good day.  I'll try to do my part.

The naming of a blog...
I have always admired Ruth in the Bible. In the Old Testament the book of Ruth Chapter 1: 1 - 22.  Book of Ruth


To make a long story short Naomi's husband dies leaving her a widow and then her sons die leaving their two wives.  Naomi tells her daughters-in-law to go back to their homes and while Orpah can't get away fast enough Ruth begs her mother-in-law to let her stay with her.  I admit it... I AM ORPAH!  See ya!  Poof!  Gone!  See this dust?  


I have been married three times.  My mothers-in-law never liked me.  I seemed to marry men whose mothers wanted better for their sons and so we were cordial but never best of friends.  Betty was no different.  She was never all that happy to share her son and I seem to recall he called and asked her permission to marry me.  Hmmm... what would have happened if she said, "No!"  The day of our wedding she had an anxiety attack and spent 1/2 hour behind the building so no one would see her.  


Anyway, now I am Betty's caretaker and although she is nothing but sweet and huggie and has all good things to say about me... I am no Ruth!  A perfect example of the fine line I walk, last night I opened her bedside drawer trying to find her misplaced tweezers and she told me that no one was to go through her things.  With tone! LOL  I do try very hard to not invade her private space but there are times when I must.  


So, for today, I continue the journey with Betty, trying to help her through her day while trying to stay sane, kind and away from cookies.  (Not necessarily in that order!)

I told Bob on the way home that I am exhausted.  I can't think of another way to describe how I am feeling.  We can't possibly think about our summer with Betty because it would be too overwhelming.  The condo is small when it comes to sitting room and since Betty does not stay in her room to listen to the radio or do puzzles she spends 100% of the day sitting right there on the couch.  I realize I am complaining but until you have answered, "So, how is your family?  Do they like school?" over and over a dozen times, you can't be judging me!


I am exhausted.  Period.  Not just in pain.  Exhausted.


Original posted to my veryinkyfingers blog;  A history;

Betty is my mother-in-law.  When we first met I think she might not have been too fond of me.  I met her once in the summer and by Christmas I was in her house visiting for 10 days with her beloved son.  She is one of the original helicopter moms.  It may not have seemed so to Bob at the time but I could see it right away.  

That Christmas I went out and bought lots of gifts and wrapped them and put them under their tree.  I saw Bob's dad go out to Sears and buy a bag full of hand tools, for me, which he was told he could not give to me as, "You don't even KNOW her."  He wrapped the gifts, sitting on the floor, grumbling about having to give them to Bob as Betty instructed.  "Mary is the one who likes tools," he told Betty.  Trust me, even then I knew she was not to be dealt with and so the wrenches and screwdrivers were opened by Bob and I was given a coffee mug which I have often thought was a re-gift.

The next Christmas I arrived laden down with gifts and with no expectation to receive gifts in return.  That Christmas Bo bought me some tools from Sears, wrapped them and there did not seem to be any arguments, they were under the tree with my name on them.  He sent me home with one of his saws as well and some plastic ties from a package of a zillion he had.  He genuinely seemed to like me from day one but it took Betty awhile.  A long while.

Betty would tell the same stories over and over and would repeat things almost verbatim, as though memorized and told as "story."   I would go home from the visits and think to myself that she had spent so much time bragging about herself.  I thought it was strange but Bob did not seem to see it at all so I thought it must be me...maybe I was exaggerating.  Year after year I heard the same stories over and over.  To me it seemed so odd but Bob did not find it strange.  

When Bo died Bob started out calling his mother twice a day.  For the original helicopter mom those calls were all she lived for.  She hardly ever went out to play golf after Bo passed as that first year she nearly fell and hurt her shoulder.  So, those calls meant a great deal.  There didn't seem to be any friends and certainly no activities.  She was never much of a reader, no crafts, no clubs and with golf curtailed that left, sitting at home waiting for "the calls."  

I went out and purchased a laptop so that she could e-mail Bob and maybe get some interest from being online.  I got her a digital camera so that she could take pictures without worrying about development.   Almost daily I was on the phone with Betty, talking her through getting the computer on, finding the e-mail that had just "disappeared" without her touching "anything" and just turning the thing on and off.  Dealing with her unplugging things because they felt warm or she heard a fan running was in itself frustrating.  I could spend an hour a day talking with her and I did it over and over with as much patience as could be mustered.  Trust me, she NEVER knew if I were frustrated by the calls, although she was always apologetic.  That is something she has always been!

The laptop worked for the first year and a half maybe two, daily calls included.  She looked forward to Bob e-mailing during lunch and she would sit and type out a long e-mail to him.  What I would ever have to share with my kids for two calls and an e-mail I have NO CLUE!   But, they seemed to be able to find things to say and I am glad I was able to give her the ability to do that.  

One of the RED FLAGS that happened was one fall when Betty got home, she could not find the cords to her laptop and she started accusing her neighbors daughter, Vickie, of using the computer during the summer. Vickie's mom and dad came over, no doubt pretty hurt and angry, and found the cord under the bed where Betty had hidden it before she left.  

Luckily these neighbors knew Betty and loved her before this happened so they realized that things were changing with her memory, and have been kind about her forgetfulness.

When Bob and I got married, Bo had already passed.  Betty had to go outside before the wedding and during the reception as she got to feeling faint.  Helicopter mom.  She actually told me she had an attack.  I was having such a good time I just smiled and told her I was glad she felt better.  That seemed to take care of it and she appeared to enjoy the rest of the day.

Betty always had good things to say about me, to me.  But, she has often asked for pictures of me when Bob and I first met because she says, "I have told my family how you looked when you first met Bob and they can't believe it."  (I have gained 30 pounds)  Hello?  So, I have tried to always be kind and respectful to Betty but have known that she has had issues with anyone being between her and her Bob who she has more than once called "her boyfriend."

That brings us to now.  The caregiving.  The tremendous patience it takes.  Allowing dignity. Trying to think ahead of trouble.  Listening to the neediness and knowing that a part of me remembers the years when I was on the #1 re-gift list.  Putting her neediness before my needs when often I could curl up into a ball and beg to be left alone.  Setting aside my sadness and realizing that she is afraid and sad beyond belief and that I would be a lesser person if I did not put her needs ahead of my own.  Holding my tongue when Betty says things that could seem crazy when I know that it is the disease talking. And sometimes, no most times, she just needs to talk and feel less crazy not receive affirmation that she is crazy.

So, it is a struggle.  I am only writing here about my struggle.  I am only writing about the part that I feel safe to share.