A journey through dementia: Savouring the gifts
by Elaine MacLachlan
My mother died of Parkinson’s disease and dementia two weeks before her 88th birthday. That was over 5 years ago. It was a long and often difficult journey. Looking back now, instead of regret and sadness, I choose to remember the gifts she gave me during that time. And, there were many. Those are the things I cherish.
Her health started to decline around the age of 80 when she fell down the stairs fracturing her pelvis. She was hospitalized for a month after which she spent 4 weeks in an inpatient rehab program. It was around that time that we saw the foreshadowing of what was to come.
My English-bred mother had always been a strong, contained and independent woman, reserved in her opinions and private about her feelings. Part of that meant she never said, “I love you”, at least not to me. I don’t recall her saying that to anyone else either. As I got older, I set about to change all that by deciding to say those words to her, fully expecting that she would respond in kind over time. She didn’t. “I love you mom”, I’d say, when I was leaving or had just given her a big hug. “I know”, she’d say back.
As my mother’s physical and mental health deteriorated, she became increasingly disinhibited which later, I discovered, is quite common for people with dementia. She began to lose some of her reserve and sometimes said things she would never have said before. Maybe now she’ll say those words, I hoped. And waited.
My first glimpse at how the effects of her aging and dementia would change our relationship occurred one day in the rehab centre while I was trying to help her put on a sweater. I may have been impatient. She may have been frustrated. The atmosphere in the room held a prickly, taut energy. She was annoyed with me. She huffed and puffed around a bit and finally sat down on the bed. With all of her pent-up exasperation, she looked at me and said, “MOM, I don’t want to wear that”.
We both caught the error and sensed its pending significance, staring silently at one another for an instant, immobilized. At that moment, I realized the shift in our relationship. I think she did too. I picked up the sweater and slipped it onto her right arm, neither of us speaking.
She struggled to live on her own with ever-increasing assistance but, when she was no longer able to manage, she went into a nursing home. At the beginning, before we had a proper diagnosis and medication to help calm her, she was frightened and paranoid. She was convinced that other residents in the home were being murdered at night and that everyone thought she was the murderer. This was a ‘fixed delusion’ I was told, also part of her illness, and she couldn’t be reasoned out of it. She refused to go into the dining room and sit with others who knew about her deeds.
Eventually, her fears were quelled and we never heard about the murders again. The staff grew to love her. She was friendly, loving towards others, had a great sense of humour and never made a fuss. Towards the end of her life, she grew softer and less guarded.
As time went on, she wasn’t always sure who I was. One night after work, I went to visit. It was about 7 p.m. and she was already in bed, not sleeping. There was a dim light on the nightstand. I pulled up a chair by her bed and sat next to her, holding her hand. We stayed silently like that for a few minutes when I noticed her staring into my eyes and studying my face.
I asked, “Do you know who I am”? She paused for a moment, looking at me quizzically and said, “You look familiar”. I didn’t respond. She continued to stare at me and then said, “Do you know my daughter”? Again, I did not reply. A moment later, she squeezed my hand and said, “You should meet my daughter. You’d really like her”. That was a gift.
Over time, she found it more and more difficult to talk or to have a conversation. She couldn’t find words. That was mostly because of the Parkinson’s disease. So, often we would just sit together in silence.
One bright Sunday afternoon, we sat with others in the nursing home lobby, during a church service, singing hymns that she had known as a child. By that point, she could barely speak at all. But she knew the lyrics to the songs and was able to sing along. That was another gift.
Those who have witnessed the painful process of watching a loved one fade away with any form of dementia know how much these devastating illnesses take from us. They take the person, their words and our relationships with them. But sometimes, they also bring us gifts. When I think back on that difficult time, I am thankful for those.
Someone told me years ago that it is important to say the following five things to a loved one before they die: Thank you; I forgive you; I know you forgive me; I love you; I know you love me. I am blessed to have been able to say all of those things to my mother.
I was with her the night she died. That was a gift. Earlier in the evening, as she struggled to breathe, I held her hand and whispered, “It’s OK to go”. My brothers and other family members had gone home to sleep, exhausted by hours of keeping vigil by her side. My partner went to sleep down the hall in the family suite at the nursing home.
I, too, was exhausted and had laid a mat on the floor by her bed. Strangely, it was more comfortable than the reclining chair the nurses had provided. After spending hours watching her breathing stop, then start, then stop again, I was very tired. I decided to lie down for a moment on the mat. I turned off the light and fell asleep instantly. About 20 minutes later, I was startled awake and bolted up from the floor. I stood up and turned on the light. She was gone.
I touched her face and kissed her forehead. “I love you, mom”, I said. I’m sure I heard her whisper back, “I love you too”. Whether that happened or not doesn’t really matter. What does matter is that I felt those words in the many precious gifts that she gave me. And, that is what I choose to remember.