This is not the usual Father’s Day reflection.  Father’s Day – a day marked in North America and other parts of the world to remember and celebrate the fathers in our lives … biological, foster, adoptive, grandfathers, etc.  And at the same time, it is ‘usual’, because it speaks of love … love of a daughter for a father when he was fully present as “Dad,” and love of a daughter for a father who began to fade away from being “Dad.”

It was many decades ago when I learned of Dad’s dementia diagnosis.

It was a journey that our whole family took, but particularly Mom, as she watched the man she deeply loved, fade away.  Dad was a brilliant man – highly intelligent; articulate; wonderful conversationalist; art historian; consultant for the National Art Gallery in Canada; entrepreneur; stockbroker; loving and devoted father, husband and grandfather; autodidact and listed in Canada’s “Who’s Who.”   Not surprisingly, none of us could understand the dementia diagnosis for him.

The “why” questions emerged.  At that time, so long ago, little was known about the disease.  And there were no guidelines for caregivers.

Mom devoted herself to Dad and as a result, her health suffered.   We almost lost her.   A decision had to be made and because Mom emotionally couldn’t do that, I flew across Canada to be with them, signed the paperwork and travelled with them to the care facility.  While it was one of the most difficult decisions and days of my life, it must have been far worse for both of them.

I lived over 4,000 miles away.  My brother lived over 2,000 miles away.  He was seriously ill.  We couldn’t be there on a regular basis and take some of the caregiving of Dad off Mom’s shoulders.  Mom was on her own.  As she no longer drove a car, she took the bus – an hour’s bus ride to the facility in the morning, and an hour’s bus ride home at night in all kinds of weather.  From the day I signed the papers and Dad moved into institutional care, Mom was with him – breakfast, lunch, dinner – every day.  Not surprisingly, her health suffered.  We almost lost her.  Physically.   Her doctor became so concerned that he told her (and phoned to tell me) that she had to stay away from the facility and couldn’t visit Dad for six months.  We almost lost her again.  This time, emotionally.

She just couldn’t imagine not being with Dad every day.  Her grief was compounded by guilt and exhaustion at all levels.

When her doctor intervened, Mom was understandably angry and upset.  But she listened, heard my concern for her and my reassurance that Dad was safe and well cared for, did as she was advised and came to live nearby me.  Fiercely independent, she agreed to the move but wanted to maintain her independence.   Slowly, her health began to improve.  And slowly she began to see and understand the importance of self-care.

When she returned to Dad, she was healthy.  And, she was wiser.  She knew how to balance her time … time with Dad and time for personal rest and re-creation.   After Dad died, Mom formed the first Alzheimer’s Association in Ontario.  No surprise to anyone who knew her.   Mom (Joy Mack) was a woman of many gifts and talents.  She was a courageous woman with a vision who was determined to help people in Canada and their families faced with the diagnosis of dementia/Alzheimer’s and to this day, thanks to her, the Alzheimer’s Association in Ontario is an integral source of information, counselling and support for those dealing with dementia either as caregivers or diagnosed with the illness.

That was long ago.   Today, diagnoses of dementia/Alzheimer’s continue to be pronounced.  And as I get older, it seems that particular diagnosis is happening more and more frequently.  The road ahead is not an easy one for caregivers of dementia patients.  The person they knew, is no longer the same person.  As the illness is first diagnosed and then progresses, it can take more and more of a beloved spouse, parent, sibling, grandparent, far away from reality (sometimes, slowly; sometimes, quickly).   Gratefully, new medication is delaying progression in many instances but still, the changes are evident and there is deep pain at all levels for all concerned.

While dementia patients endure many basic frustrations and losses (memory is only one), caregivers endure frustration and loss when changes in their loved one emerge … the ability to enter into a meaningful conversation becomes short-lived or non-existent … the ability to understand banking or technology or recipes or even how the phone works becomes short-lived or non-existent … the ability to understand it to be a particular day or month or year … the ability to remember a birthday or anniversary or Christmas etc..

As the illness progresses, things can change for the caregiver even more … loss, grief, reality set in as the realization that the above ‘abilities’ are not functioning and no matter what they do, they cannot help their loved one to regain those abilities … stress can bring physical, intellectual, spiritual and emotional responses / reactions – not sleeping well –  exhaustion – not able to concentrate – anger – reliance on alcohol / prescription drugs / medication to help ‘get through the day’ – social isolation due to not wanting to leave their loved one alone for too long – frustration at having to repeat answers to the questions over and over and over – patience is no longer part of their personality – a sense of guilt arises about leaving the person alone at home while the caregiver gets their hair done, goes grocery-shopping, takes a course/workshop, etc..

What to do?  Self-care.  How that self-care is manifest, is different for every caregiver because every situation is different.  But the directions of flight attendants in plane emergencies: (“If the oxygen mask drops down, put yours on first and then help the person who needs help”) are a guide: self care, first and foremost. Dementia is a difficult journey for all concerned – the person diagnosed, family members who try to help by bringing up memories of the past and say “Do you remember when we … you … I did such and such?  Do you remember … fill in the blanks.”

The reality is, they don’t remember and realizing they don’t remember only serves to cause them distress.  So we must not go that route with them.   We must “be” with them – where they are … in their time zone, in their physical space, in their understanding of situations and people.   Not insist that they are with us in our time zone, physical space, understanding of situations and people.

My hope and prayer is … that family and friends will remember the importance of not asking the “do you remember” questions. May those who are afflicted with dementia know they are loved.   May family members and friends not judge the decisions caregivers make for themselves, or for their loved one who has been diagnosed with dementia, for they are doing the very best they can.

And may caregivers remember the importance of self-care and take care of themselves.

First.

Their loved ones would want them to.

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A PERSONAL ASIDE:  Yes, this might be an unusual Father’s Day reflection, but hopefully it is seen in light of tribute to a man who faced his devastating illness with courage.  The man I remember this day and many other days, Albert Edward Mack (Eddie)  was a gentle, wise man – a loving and respectful-of-all-people –  man.  The lessons he taught were ‘gift’ as I was growing up and even more so now that I am older than he was when he died.

This day, I remember Albert Edward (Eddie) Mack with much love and deep gratitude.
Rest in peace, Dad.
Rest in peace this Father’s Day and all days.  You were a wonderful father and I honour you.
Your memory is such a blessing.

© June Maffin

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