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First Person: No family or residence is perfect, but we must try harder

Barbara Moser and her mother, Eva, at the Times of Your Life Festival in ’89.

Barbara Moser and her mother, Eva, at the Times of Your Life Festival in ’89.

Losing my mother, Eva, in early July was nothing like I thought it would be. I thought I had done what I could to make sure she was taken care of by finding a small residence with people who seemed to love her.

I placed her there seven years ago when she started showing symptoms of dementia. She was given a lovely room and we “individualized” it with pictures of family covering the walls. We moved in her favourite pieces of furniture. Everything seemed perfect, except there was little or no stimulation from what I could tell. Often when I arrived unexpectedly, she was sleeping. I let it be because they seemed to be taking very good care of her.

Little by little, she lost whatever interest she had in doing small chores like setting the table and folding laundry because everything was done for her. I had The Gazette delivered (which she had once read avidly) but there was no one to read it with her. And I let that be.

I wondered about some of the meals I saw being served on weekends: sandwich halves on white bread or hot dogs with made-from-frozen fries. And I let that be.

I started to worry when I met the doctor who visited once a month. He did not want to look me in the eye and was brisk and cold. He wasn’t keen on discussing my mother’s health or quality of life with me. And I let that be.

Then things got worse. Our podiatrist informed me that my mother’s toenail had to come off because no one had noticed how badly infected it was.

About two years ago, my mother was diagnosed with breast cancer. Again, it wasn’t the doctor who noticed the substantial lump on her breast, but the wife of the owner. The lump had been there for quite a while, the oncologist told me, but because my mother had Alzheimer’s and it was growing slowly, he would treat it with medication because surgery would be too traumatic for her.

A few months ago my mother took a turn for the worse. She no longer enjoyed food at her favourite restaurants. She forgot how to use her fork and knife. She stopped smiling and making jokes. She didn’t seem to know who we were. Over a month or two she forgot how to walk. She would take two or three steps and then begin to fall. When I asked the residence about this, they said I shouldn’t worry, even when she forgot my name and ceased recognizing me altogether. It was happening too quickly. And I let it be.

One day I showed up and she looked ill. She was sitting slumped over and didn’t budge or acknowledge my presence, even when I put my little dog on her lap. When I called the owner, he said she was tired from a recent activity—singing. It was clearly more than that. What was happening to my mother? I told the residence owner that she needed a doctor. But the doctor wasn’t called. And I let it be.

On the evening of Saturday, July 6, the owner’s son called and told me I had to call the ER doctor right away because she had to know if I wanted them to use extraordinary measures if my mother should lose consciousness.

My mother had been sent to the hospital by the doctor during his monthly visit at 5pm. I was being informed at 11pm, ostensibly because they thought I had left town. If that was true, why were they calling me six hours later?

My mom was sent alone in the ambulance, confused and in pain.

When we rushed to the hospital, we were told she had sepsis, from an undetected infection. They weren’t sure if it had started in the urinary tract but that seemed possible.

I was left to make quick decisions that would keep my mother alive, but for how long? I was shocked to see her so agitated and in so much pain. When the ER doctor told me that no matter what we did, she probably wouldn’t last the night, I told them to take out all the tubes and needles and let her die in peace.

The four of us—Irwin and I and my daughters Amy and Molly—spent the night by her side while she got morphine and seemed much more comfortable. We sang to her, all her favourite songs, and talked to her. At one point, she seemed to come back to us. She looked into our eyes and seemed to know us. Finally in the morning she died. It was such a gradual process that I didn’t know when she was actually gone.

 

I tell this story because I know many have gone through what I have and what my mother did. I feel guilty because I didn’t push harder to bring another doctor into the residence (although that is not easy) when the owner wouldn’t listen to my pleas. I feel guilty that I didn’t check my mother for signs of infection, didn’t take her to a doctor when she kept complaining she couldn’t walk and listened instead to the owner who said she was walking fine at the residence and as always, “it was nothing.”

Later I was also told that my mother had fallen and they had put her back in bed and informed the CLSC nurse later. I have since learned this is exactly what not to do. Never move a senior who has fallen. Call 911 immediately and then inform the family.

What are the lessons to be learned from my experience? Follow your instincts. Don’t let others tell you not to worry if you know something is wrong. Check for problems yourself. Don’t wait for doctors and caregivers to discover and treat your parents’ symptoms. If possible, visit often and at different times of the day and week. Look for sudden changes in weight and appetite. My mother lost a lot of weight in the last few months.

Am I grateful that I found a residence that looked after my mother for seven years? Yes. Could I have done better for her by moving her? Probably not. The move would have been traumatic for her.

If you have a loved one in a residence, learn from my story: Don’t let it be.

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