“I’m leaving soon”, she said, the hint of a twinkle in her eye. She continued enjoying the popsicle the staff had given her, any encouragement at nutrition necessary these days. We smile and I simply replied, “Really, tell me more.” She considered my question. Conversations had become brief and rare in her advanced state of dementia, yet there were these occasional moments of breakthrough.
“Are you going to heaven?” I asked. She smiled broadly then gave me a look of certitude. “Well, I should certainly hope so!” she replied, then chuckled and turned her attention back to the popsicle. That was nine months ago. On June 13 th she left, walking through the gates of heaven, once again in the company of Ron, her husband of 75 years. I had no doubt that is where she landed.
How do you Grieve?
Dorothy’s dementia began over a decade ago, initially with short term memory loss, then with perseveration, repeating the same questions or stories over and over, often to the annoyance of others. Her wit however remained sharp. I would sometimes say, “I just gave you the answer to that question, don’t you remember?”; to which she would respond, “I’m lazy and you have all the answers.” Once when I asked her about her memory she looked at me, grinned and said, “I forgot to put the hard drive in!”. As she was not a computer wizard by any stretch of one’s imagination, I wondered where that answer came from.
There are many forms of dementia. Mom suffered from ‘multi-infarct’ dementia, formerly called hardening of the arteries. This meant a step-wise decline, little strokes stealing away parts of her over time. With each loss you grieve, recognizing that what once defined the person is being lost incrementally. One day they are as they have been for a few months and the next day that has changed. Bit by bit the decline occurs, short term memory, long term memory, every day tasks, the ability to groom and dress or take a shower, the names of your children, continence, and inevitably speech. You learn to celebrate the occasional lucid moments, to smile and laugh together. Mixed with that you shed many tears on the days where the body is present but they are simply not there in spirit.
So how do you grieve when they finally pass, when you have been in the process of grieving for years? Certainly, you feel the loss, as profoundly as one can imagine, while at the same time you feel an enormous sense of relief as the spirit of the person you love is now free, no longer trapped within its human form.
Last October in my Seeker Column I wrote the following:
The Thief
He crept in slowly, silently and insidiously, leaving no trace that he had been there. No fingerprints, no broken locks or silenced alarm systems. No footprints or evidence of any kind. No jewels or family heirlooms went missing, no electronics or other valuables taken.
What he stole could not be seen by the human eye. It would only be noticed months after his initial visit. His visits would continue day after day, week after week, month after month and year after year until he had stolen everything. His name DEMENTIA.
The thief first appeared about fifteen years ago. He stole very little to begin with, a few recent memories, the snippets of conversations with family and friends, a dinner gathering with family. No one thought much about it, after all, a few memories misplaced by an 80-year-old did not seem significant. Those close to her began to express annoyance when she repeated herself, asking the same questions over and over and immediately forgetting the responses. “What is wrong with you?”, they would ask, “are you not paying attention”. Perseveration it is called, and as this worsened those close to her began to realize that she was not doing this intentionally, she simply did not remember. She would laugh and say she was being lazy and why should she bother to remember when we did. On one occasion she stated that she had turned on the computer but forgot to insert the hard drive, a witty response I had to admit.
Along the way you learn a lot, you learn to be patient, non-judgmental and most importantly not to make her wrong. That may have been the biggest lesson of all.
Relief
So yes, I am relieved. Visiting Dorothy regularly, as I was her POA for personal care and because she became ‘mom’ to me many years ago, it was always guesswork as to what we would experience. I learned to cherish a smile, a few garbled words, eye contact, any sign that she was in there somewhere. On one of our final visits, she took my hand, looked deeply into my eyes, as if imploring me to release her from this existence. She had not looked at me recently preferring to connect with Jim whom she thought was her deceased husband, Ron. On this occasion we connected, profoundly. I am not sure why she chose me that day. I left in tears. I knew the journey was coming to an end.
Ten days before she passed, we met with the physician. Let me share that Dr. Cookson, is one of my heroes. She took the time to speak with Jim and I, to compassionately explain what was happening and what to expect, and to honour our wishes to make her as comfortable as possible. In making these choices, we new only a few days remained. The relief in knowing she was being cared for so intentionally, gave us peace.
And finally, relief comes in another form. For those of you who have had a family member or close friend with dementia, you will understand me when I say many people simply don’t get it. How many times I have explained to friends and colleagues that Dorothy is no longer able to communicate, or remember our names, or…. It is tiresome, making our reality in many ways even more painful. Some could not believe what we were telling them. So please, if you are reading this, and you have yet to experience someone with dementia, be kind and compassionate with the family members and caregivers. I am relieved that I no longer need to explain.
Final Word
I celebrate the life of Dorothy Louise Healey (Jacques), born in Martintown in 1928, one of 19 children, a mother, grandmother, great grandmother; a woman who loved education yet was deprived of the opportunity; a woman who went on to finish her high school diploma and go on to St. Lawrence College to study drafting and become a draftsperson for several years (in her thirties and after having six children). She was tough, resilient, dedicated, a founding member of St. Francis de Sales Catholic Women’s League and the last surviving member of this group. She lived to be 97 &; ½ years of age. I am sad, I miss her and I am relieved.
Until Next Time
Betty Healey
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