Monday 6 May 2013

Never simple - Alzheimer's ** long**

    We just want to thank all of you who have been so patient and gracious with us.
On the 3rd of May our hearts broke as we said goodbye to our Dad. Mel was with Dad and Mom as Dad slipped away from us.

As you may have gathered, our Dad had Alzheimer's disease. At age 60, after a battle with cancer, dad seemed a bit confused in the day to day activities of life. 
It is simple enough to explain away with the firm belief that "he was under a lot of stress" and that is why he seems a bit confused.

After cancer recovery Dad went back to work. When the winter came the shop was quiet so he was laid off.  The confusion was less evident to us because he spent his day's at work and resting when he arrived home.. until he was laid off ...
After a few years of this work pattern Mom decided it was time for Dad to retire. There is no need for a 62 year old to be lying under trucks on the side of busy highways in the rain, sleet and snow. Dad had earned his retirement from being a mechanic at a large paving company.

Mom decided it was a good time for her to retire too. And there they were, together again, ready to explore the world!  After a few weeks Mom started to notice some odd behaviors; trouble following directions, simple tasks seemed to take much longer, a change in personality (more irritable). Dad was always loosing his tools in his garage - we know because he would get in the truck and head down to the Canadian tire to buy new ones.

Conversations were had and Mom was told not to worry about it "he was just getting use to being retired, he will find his routine and be back to his old self"  Dad was getting a bit depressed. We think he knew what was happening but tried to hide it .. or ignore it. He soon became depressed.

The odd behaviors worsened and Mom started to ask BIG questions. I don't think any doctor wants to diagnose Alzheimer .. and so Dad's doctor tried to come up with every other possible reason for this change in Dad.  Our Grandma had Alzheimer's, Mom had seen this before and so she pressed on. After complete frustration she was finally able to make the doctor give Dad a "mini mental" .  That did not go well, when asked to turn the clocks hand to 2:15, my Dad could not do it, when he was asked what day it was, what season it was, what year it was ... none of those could he answer. During this interrogation (as he felt it was) he began to grow angry, he was looking to Mom for the answers but she could not respond.  It was heart breaking for Mom, there was no need to go any further, her fears were confirmed. Still, the doctor would not say the words, Mom needed a specialist for that.

A few weeks later they had the appointment at the specialist and yes, it was Alzheimer's.
Now what? Well, it was time to take his license away. Our dad was born with a wrench in his hand, he was always found peering under the hood of friends cars .. or even under them!
As we grew up many an evening we would be coaxed out into the garage to help him fix something under the hood. Mel and Dad rebuilt and engine together. Mel has tiny little hands and they were great for getting into small places that Dad's hands could not get into.
We lived with the fragrance of grease and oil, and it was comforting, it was our Dad's scent.
How do you take a license away from a purebred mechanic?
He was angry, but truth be told, Dad didn't drive to far or too much anymore. He would always handover the keys "here Melly, you drive". He knew but that didn't stop him being angry about it.

The disease progressed. It was hard for friends to watch .. so friends stopped coming around. Dad didn't know their name, couldn't make much conversation and would sometimes get angry in public for no apparent reason. He was a loose cannon and they were scared. It is a scarey disease, it robs you of who you are, it steals away your personality, it makes you behave in way's you would never want to behave and then it takes away your life by slowing tying up your brain into tangled webs , strangling out communication until you can not think how to eat, how to move, how to drink and then how to breath.

We did have a lot of angels around us. My parents have lived in their house over 40 years. My Grandpa had bought the property and built the house. Dad grew up in that home. Over time the neighborhood developed and Mom and Dad made new friends, new neighbors.
Dad was never around come dinner time .. you could always find him down the street helping someone or just chatting about the day. He was a social butterfly.
It was the neighbors who came through, they visited often, they helped with grass cutting and watching Dad while Mom went out. They even came running when Dad wandered down the street with a bee in his bonnet and Mom could not stop him or get him to come back.

There was another angel friend. Bill visited Dad every Friday. He brought coffee and donuts and conversation. He was wonderful. Living in a house with Alzheimer's can get pretty lonely. You can run out of things to talk about very quickly, especially when the conversation is filled with confusion. It is important for people with ALZH to be active and engaged, stimulating the brain keeps it working! Day programs became essential and over night stays at the V.O.N would give Mom a bit of rest.

Sundowners is something that most people living with ALZH go through. Near 4:00pm Dad would start to roam. He would open doors and close them, turn off lights and shut them off, move furniture from one side of the house to another, turn on and off the taps. This can go on for 2 or more hours. It is hard to watch. Eventually Mom had to Dad proof the house. She had stoppers put on all the doors, locks installed at the tops of doors and a alarm system that would make a sounds when the doors would open and close. She had to keep him safe and this meant keeping him in the house. Very heart breaking.

And Oh the things he broke. He was a fixer all his life but he could not keep his hands off things. Constantly taking things apart, stashing things away and just throwing stuff out!
It would be no surprise if your phone was missing by the end of the evening. Sometimes you could find the stuff, in his coat, his pocket or his top dresser drawer. Other times things went missing forever. Funny but scary moments like when he tried to cut his nails with scissors, or he could not figure out how to take off his thick leather belt .. so he just cut it off.. with what we don't know. We tried to have him wear an and metal ALZH bracelet .. but he ripped it off .. that must have hurt.

And the disease progressed. Mom had to take down or cover all the mirrors in the house. Why? because Dad would have conversations with the person in the mirror. He did not recognize himself. He did not know who we were either, his children. Dad tried so hard to be a good man. Until his last day you could hear him say "excuse me and sorry" to caregivers who helped him bathe and dress. We could take him for drives and he loved it, he would smile from ear to ear and of course we would stop for donuts or ice cream.

And the disease progressed. The point came when Dad refused to eat, he would not do it on his own. We tried to feed him but after a while he would refuse and clench his teeth.
He rapidly lost weight and became weak. It was time for Mom to move him to a home. By the grace of God a spot opened up at the Home that was my Moms first choice.

Dad had sleep apnea, he has worn the "mask" for years. It kept air flowing into his body helping him to sleep better. Sleep apnea is hard to explain Here is a link to find out more.
Dad found out he had it when we were in our teenage years. So he would have been in his early 40's. On the most basic scale people with sleep apnea stop breathing for periods of time when they are sleeping, there body then gasp's for breath as they wake. This happens many times a night and the sleep apnea sufferer never really get's a good nights sleep.
During the time the brain is deprived of oxygen .. which is really not good for the brain.
Couple sleep Apnea with ALZH and you have an accelerated rate of brain deterioration.

Dad only spent 4 weeks in the Nursing home. He was too weak because he was not eating and he would not keep his sleep apnea mask on. Soon he could not remember how to swallow.
The last 3 day's we were told that things did not look good and on Friday May 3rd at the young age of 68, Dad slipped away from us while fast asleep.

So once again we thank you for your patience as we digested the loss of our Dad.
We are back to work and filling our orders as quickly as possible (but with great care!)
Thank you also for taking the time to read this.

If you are curious about Alzheimer's, we have found social media, in particular twitter, very helpful. You can follow ALZH groups from all over the world, keeping up to date, asking questions and reading pertinent articles. We are by no means experts and we are only publishing our own views ... we are just lovers of someone affected by ALZH so please do your own research :)

Thanks for reading!

Aim & Mel