Friday, April 25, 2014

My Mom has been diagnosed as having Severe Dementia

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My Mom has been diagnosed as having Severe Dementia
I don’t know when I first really felt the change that is taking place in my life.  Was it when I was in the garage and sorting through the boxes…?  Or was it when I made the decision to join the Alzheimer’s Support Group?  Or maybe it was when the Geriatrician said the words “severe dementia”…?

The box sorting happened as I needed more space in the garage. I had to open my Mom’s old boxes that were packed in Regina and then shipped to Peterborough 7 years ago.  They have been sitting quietly in the back left corner gathering dust.  In the boxes were all the things from my Mom’s apartment that she had to move out of… and far too many things to put in her smaller room in our house.

As I looked through the boxes I was almost overwhelmed with feelings that usually come at the funeral…Grief.  The things reminded me of a time long ago when my Mom was vibrant, engaged and cheerful.  She was lady fully in charge of her own affairs and very creative in so many ways.  She was taking a writing course at the University and also a very advanced pottery class as part of the Pottery Guild that she belonged to.  Mom was in her 70s then and approaching the 80s in the next few years.  But my Mom isn’t like that anymore.  My vibrant Mom died a few years back… and the one that she has become moves very slow, cannot remember many things as well as demonstrating her anger mixed with deep sorrow – at the least little thing coming her way.

I mentioned that it might have happened when I joined the Alzheimer’s Support Group.  In this group there are other men and some women that meet every two weeks to share where they are at. By talking about how they are doing – and how their spouse is doing… there are new reference points for the listeners. People like me – listen and trying to figure out what stage I am at as a care giver… let alone what stage my Mom is at in the deep progression toward more frustrating times.  I realized at that moment of entry that we have huge problem that is only getting far worse – day by day.  As the other men described how their wives sit with their heads down and eyes staring straight ahead… not knowing who their husband is… I realize that I am heading into these unknown waters of my life where I will be looking after my Mom who will become just a shell of the person she once was.

When the Geriatrician said the words “severe dementia” I was rocked a bit at that moment. I had suspicions that we were having some problems but never guessed at the word “severe”. I knew that for the past 7 years of her living with us there had been many frustrating moments for me (and for my Mom) when ordinary things that should be very easy to cope with happened… and she would lash out like a viper. I would counter with disgust and walked away. 

I have spent a lot of time in my workshop escaping my strange Mom, the Mom I do not understand now.

I had left home at around 19 years of age with some small escapes a number of times before that. I only really knew my Mom for maybe 19 years. I couldn’t wait to leave what I thought were things that I didn’t want in my life. 
Then 7 years ago we move my Mom from Regina, Saskatchewan to Peterborough, Ontario… 1700 miles away from what was normal for her.  The Mom that I moved east was not the one that I knew 52 years earlier.  She was already showing deep signs of dementia.  I had credited the “evidence” we saw as her feeling of loss having moved from her home province of 86 years.  I thought at times she had a hard time adjusting to the new routine of living with two other people. I thought a lot of things…

It has taken me 7 years of long and horrible battles inside of me to come to the realization that my Mom has dementia that has changed her life and mine.  And nothing I try to do about it will make any difference. Dementia cannot be fixed.

The kind of dementia she has exactly is vague at this point. It could be vascular dementia of maybe one of the other four that are now known. And just in case one of these five is not the correct one.. the Geriatrician said it could be a mixture of different kinds.

Opening the head up to just take a look to see what it might be is not an option. Mom isn’t quite like a car where I can open the hood and look at the motor.

But I can take a look at me and how I am doing.  Together with my wife, as we look after my Mom’s state of affairs for that day or this time… we certainly need to check our attitudes often.

It would be so easy to say, “Mom… have you just got more stupid each day or what!?  What is the matter with you anyway?  You know better than that – come on… try harder this time…!!!”

It would be so easy… so stupid to say that now.

My Mom will cry easily now… sometime for no obvious reason. She will sometimes say… “I always do it wrong. I always make mistakes…” But as time has gone on… she now doesn’t say that as much anymore.  She is failing day by day. She used to say she was “I am so sorry for what I did… please forgive me.”  Now she does something… waits until we help her and then moves to the next thing she needs to do. The words “so sorry” have stopped.
No there is nothing to feel sorry about. But when she was a self sufficient person all those years that was close to perfect … making a fool of the way that you eat… use the toilet… or fail to do the ordinary things that everyone takes for granted… you feel a deep sorrow and are very sorry.

I have a whole new sense of what will happen next.  My Mom has dementia problems and I need help.

Oh yes… I have tried to answer the question that some many of the professionals have asked… “Have you thought of placing your Mom in a senior’s care home?” 

Yes I have considered it. BUT… having her there and not knowing if the staff give a “rat’s ass” about the old lady that won’t eat… just kind of goes against my grain.  Having her sit in her faeces until the lunch time is over… coffee break/smoke break is over… kind of stirs me inside.  I know that I can’t do better than some… but I can care more than some of the others.

My Dad was about ten months away from his own death in the fall of 1986.  I was driving in his car across Canada. Mom was sleeping in the back seat.  He looked at me and told of his great concern of what would happen to Mom after he died.  I tried to console him by saying very clearly, “It’s okay Dad, I will look after Mom when you are gone.”

I have a lump in my throat again today thinking of that… the same one that I had in the garage with the boxes… the same one when I joined the support group… and the same one when the Geriatrician said the words “severe dementia”.

My Mom has dementia… and I am a care giver.

~ Murray Lincoln ~

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Anonymous said...

Dear Murray,
What a very moving essay you have written. Your deep love is so apparent for your mother. She is very blessed to have you and your lovely wife as care givers. I will pray for you when I think about your situation. I know His Grace is sufficient for you. god give you strength,courage and Heath to continue on your journey.

Mark Gillett said...

Praying for you, Murray.
Mark Gillett

Brenda said...

Murray--This is an excellent Blog. You have written it beautifully. We feel for you & Alida. It is obvious your Mom has passed what My Mom dealt with in her dementia--I guess every case is different. Thankful for you that you have some respite week-ends.
Keep up the great work--God Bless you as you continue to cope.