It was many decades ago when I learned of my father’s Alzheimer’s diagnosis and the importance of not asking Dad the “do you remember” questions.  It was a journey that our whole family took, 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, entrepreneur, stockbroker, incredible father, devoted husband, autodidact and listed in Canada’s “Who’s Who.”

Not surprisingly, none of us could understand the dementia/Alzheimer’s diagnosis for him.  The “why” questions emerged.  At that time, so 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.  Toward the end of Dad’s life, a decision had to be made and because Mom emotionally couldn’t do that, I flew to be with them both, signed the paperwork and travelled with them to the nursing home. It was one of the most difficult decisions and days of my life.  It must have been far worse for both of them.

I will never forget “that day” when Dad moved into institutional care. But that part of the story perhaps, will surface in another blog posting.   This blog posting is about Mom and Dad and Alzheimer’s / dementia.  From the day Dad moved into institutional care, Mom was with him – breakfast, lunch, dinner – every day.  I lived over 4,000 miles away; my brother lived over 2,000 miles away.  We couldn’t be there for her on a regular basis and take some of the caregiving of Dad off her 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 ride home at night.  She wasn’t a young woman.  And not surprisingly, her health suffered.  Again, we almost lost her.  Her doctor became so concerned that he told her (and phoned to tell me) that she had to stay away from the nursing home and couldn’t visit Dad for six months.  We almost lost her again – a third time.  Not physically that time, but emotionally.  She just couldn’t imagine not being with Dad every day for as many hours as the nursing home allowed her to be there, and 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 with me for six months.  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 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.  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.

That was long ago.   Today, diagnoses of dementia/Alzheimer’s continue to be pronounced.  As I get older, it seems that particular diagnosis is happening more and more frequently.  In the past month, I’ve learned of three friends who are dealing with their husband or their parent’s diagnosis of dementia. And tonight – a fourth (!) phone call from a friend who learned of her husband’s diagnosis today. The road ahead is not an easy one for these caregivers.  The person they knew, is no longer the same person.  As the illness is first diagnosed and then progresses, it takes more and more of a beloved spouse, parent, sibling, grandparent, far away from reality (sometimes, slowly; sometimes, quickly).  There is deep pain at all levels for all concerned.

And while Alzheimer patients endure many basic losses (memory is only one), caregivers endure loss too, 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 is a particular day or month or year or remember a birthday or anniversary or Christmas or … becomes short-lived or non-existent.  Their mind could be living in the previous month or year or five years ago or twenty years ago.

As the illness progresses, things 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 them ‘get through the day’; social isolation due to not wanting to leave their loved one alone for too long; frustration can emerge at having to repeat answers to the questions over and over and over; discovering patience is no longer one of their virtues; a sense of guilt can arise about leaving the person alone at home while the caregiver gets their hair done, goes grocery-shopping, takes a course/workshop, goes out for lunch with a friend etc.

What to do?  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.  How that self-care is manifest is different for every caregiver because every situation is different. Dementia/Alzheimer’s is a difficult journey for all concerned.  May family and friends not ask those who are afflicted if they ‘remember’.  May those who are afflicted know they are loved.  ay family members and friends not judge the decisions caregivers make for themselves or make for their loved one who has been diagnosed with the disease.  And may caregivers remember the importance of self-care and take care of themselves.  First.  Their loved ones would want them to.

© June Maffin