Sandra Savell shares her experiences of caring for her mother, Helen, who had Alzheimer’s.
Who are you?
Sandra Savell – I cared for my mother who had Alzheimer’s disease until her death in 2010. I was her main carer for 10 years – from the beginning to the end of the journey.
How was your mother diagnosed?
She was not properly diagnosed for five years. I took her to the physicians I worked for and they provided the diagnosis of Alzheimer’s disease, although even that diagnosis was a long time coming.
Did you take any key steps once they had received their official dementia diagnosis?
I hired a part-time carer and went to a part-time status at work. I started my mother on Namenda and Aricept medication. I also enrolled her in a Silver Sneakers exercise class and just tried to figure out daily how to handle what she was living through for that day.
How did you tell people and what was their reaction?
A lot of her friends and family refused to believe it. Many people didn’t want to hear about it. Nobody but my husband knew what I was going through.
What challenges did you face and when did they happen?
One big challenge was when she no longer wanted to shower. I could not coax her into bathing for any reason. But Mom cared a lot about what my husband thought and he would tell her that she smelled and asked her if she would take a shower, and she would for him. I tried diverting her from her anxiety, but it was very difficult to distract her. There were times when I would give her a light tranquilizer so she would not become so agitated that she would be up all night.
Did any services made a difference?
I found my carer on my own, but I used carer agencies to fill in when needed and they were very helpful.
How did the dementia journey end?
My mother slipped and fell, breaking her hip just five hours before her surprise 85th birthday party at her memory care unit. She was in the hospital for nine days before she died of coronary heart disease. Her heart just couldn’t take all the stuff that went with the broken hip, the drugs and the surgery.
Was your experience of living with dementia better or worse than expected?
It was a nightmare. I never expected it to be so difficult and heart wrenching.
Were there any earlier signs that, looking back now, you recognise as the early stages of dementia?
When my mother decided to retire, I urged her to continue working part time. I knew she would eat poorly, get no exercise and smoke and drink alcohol too much. She did not listen and it happened as I feared. She first had trouble writing cheques. She forgot to pay bills. She would forget doctor’s appointments. She would forget it was Sunday and would not be ready when the church sent a ride to pick her up. I knew then that she was in the early stages of dementia.
Is there anything you know now that you wish you’d known earlier?
How badly my health would be affected. Also, I quit my job eventually and now I wish I hadn’t. I loved that job…but I’ve been replaced and they no longer need me.
What lessons have you learnt?
That family will not always help you. Friends may get tired of listening to you. And not many will understand you unless they went through it. Just remember that this stage of your life and their life is temporary. You will survive it and will take up your life again one day; although it will most likely be a different life to what you had before.
Sandra is the author of Dear Clueless: A Daughter’s Journey Through Alzheimer’s Caregiving.