On Giving Tuesday 2016, you supported our caregivers with $1400 in donations – thank you! That’s enough to cover Support Group sessions for 56 caregivers!
Murray, one of our dedicated caregivers, tells the story of his caregiving journey...
Discovering I Am Not Alone
By Murray Lincoln
Murray and his Mom Marion
When my mom Marion moved to Peterborough in March 2007, we had a perfect plan. And better than that I was fulfilling a promise I had made to my father that I would look after mom after he left us. That promise was way back in 1986.
In December 2006 my mom’s Doctor in Regina, Saskatchewan had called me to give the news that she needed to be in an “assisted living” arrangement of some kind. Without us knowing the Doctor had seen something that we knew nothing about, but he would not say more on the telephone other than he was adamant she needed a new living arrangement.
The move took place. Mom loved it and hated it at the same time. Now she was 1700 miles from her nearest relative in their very close family. Her reactions to what I did and said were odd. Mom had never talked to me that way before. I seemed to become the focus of her vile anger. Shocking to say the least, Mom had never been that kind of person. Other times my mom was happy and so thrilled to be living with us. She loved it! I was confused.
We had her room all fixed up and ready for her when she arrived. All her needs were taken care of as far as I could see. To top it off my wife as a former RN stepped in to help wherever she was needed.
The story is too long to tell here… but as time passed mom grew more and more dependent on us for her care. Eventually she couldn’t bath herself or do the normal personal care as to the toilet etc. She had passed the 90 year mark – and we had passed into the “severe stage” of living where we were now “Mom-Centric”.
Every waking moment and in fact every sleeping moment was filled with Mom. It was not uncommon to have a loud banging on our door at 3 am… or have loud thud from her bedroom as she fell time and again.
I had promised my dad that I would look after mom – but this was crazy and even crazier the next day. We had never felt more alone at any time in our lives. Surrounded by friends and yet alone in our nutsy world of caregiving for a person that had something wrong that could never be fixed!
My wife and I were at a small meeting that was advertised as “someone doing a LHIN survey for care of the elderly”. We sat with some others around a table and each described what we were facing. One lady mentioned that she had been to the “GAIN Clinic” to have an assessment done for her husband. GAIN Clinic – what was that!???
We had no idea that community help was available for us… or what kind of community help there might be. We were so involved with just maintaining a semblance of sanity in a very bumpy and unbalanced life that there was no time to look into anything. We did get an appointment at the GAIN Clinic. While there they did an assessment on my mom. They also interviewed my wife and me to see how we were doing. I am sure now that what they saw, we couldn’t see or have any idea how bad things were.
One of the GAIN Clinic team members that day asked if we would be willing to attend a group for people that were caregivers. That group idea was something to do with the Alzheimer Society. We had no idea that such a Group existed and that the one they suggested was only a short distance from where we lived!!!
In about a week’s time we met the most amazing young lady by the name of Denise – the facilitator of the Alzheimer Society Support Group. Our entrance was slow and careful in that I had no idea who these folk were. I had to be real careful with my “public image”. The anger and frustration in me that had grown while trying to help my mom had grown as my mom’s hidden disease had grown. If I said anything I would blow my top like a volcano that was trembling from deep inside.
But after a few meetings and listening to others, I couldn’t hold back anymore… I exploded verbally, truthfully, irrationally, impossibly, angrily and in just about every adjective that might describe a man out of control… and hating every moment of the promise that he had made to his father years ago. This happened many times – but no one ever condemned me or was shocked by what was said.
We have been regular members of our Alzheimer Support Group for over three years now. I have found peace. With the Alzheimer Society we discovered help for us personally and information to understand.
With our community help we had discovered an Adult Day Program through the VON that also offered their respite weekend care for mom. Finally, we had also discovered a wonderful long term care home for mom at Riverview Manor, where the staff could not have been more kind and understanding.
My mom passed away last November 2015.
We were not alone. There was wonderful help for us… as there is for you if you are a caregiver.
In addition to support groups for caregivers and people with dementia, your Alzheimer Society offers a range of education and support services at no cost.