Now It's Dad's Turn to Hold My Hand Like a Little Child

I am continually fascinated when hearing why writers write ... this could be to share, to teach, to encourage and to even cope. My reasons for writing "Caregiver's Guide for Canadians" involved all of these. As a former caregiver myself (Mom had Leukemia and Dad had Alzheimer's disease), I relied on the craft of writing to reduce my increased stress. One of my many caregiver -related articles was published in the Edmonton Journal on Father's Day, 2002. Entitled "Now It's Dad Turn to Hold My Hand Like a Little Child", this story focused on the changing relevance of Father's Day. I share this below:


Now It's Dad's Turn to Hold My Hand Like a Little Child

He is twice my age, yet holds my hand like a little boy. he, however, does not think slingshots, baseball or how to avoid taking a bath. Nor does he gleefully pull a girl's pigtails, chase the family cat or hide a frog in his pocket. This little boy is my father.

Following the day of Dad's Alzheimer's diagnosis, my life has changed dramatically. I have gone from being a son to being a caregiver to being forgotten. Warm smiles of recognition have been replaced by formal handshakes - as if we were meeting for the very first time. Officially, I have become joint Guardian and alternate Trustee for Dad and have had to make many decisions for him. My acquired responsibilities have included banking, chaffeuring him to doctor's appointments and watching for unforeseen dangers when we walk.

I have tied Dad's shoelaces, zipped up his jacket and ensured he was wearing long underwear in the winter. I have searched for hours looking for his missing glasses and silently blessed his real teeth, which, unlike dentures, do not go astray. I have patiently listened to his endless repeating of questions and stories. I have often lain awake long into the night, recollecting tomorrow's schedule or fearing if he has fallen from his bed. Life as a caregiver has been stressful and challenging.

In the search for suitable care, Dad has been moved three times in the last five years. Considerable effort has been made to make each stop feel like home but there is less and less storage space for Dad's personal belongings. His current room holds little more than a bed and small bookshelf, cluttered with family photographs, books and various objets d'art. Each of these items, the quilt on his bed and his clothes were all painstakingly labelled for identification.

The level of care at Dad's current home is excellent; however, it has been difficult for me to accept him being there. The salmon-painted hallways are intended, ironically, to soothe those who walk among them - I have cursed these corridors. The shared rooms and privacy curtains seem very institutional and offer proof of Dad's decline. Learning more about Alzheimer's disease has not been easy - this affirms that Dad is not who he once was and will never be the same again.

Dad's further weakening, both mentally and physically, is characteristic of this disease and has to be one of the hardest things to watch. There is absolutely nothing I can do. Here was an intelligent man, professional and highly regarded. I remember him leading vigorous family hikes up steep mountain trails; now, he is hunched over and can barely walk a few blocks without tiring. He has become a shadow of who he once was. I, in turn, have become someone I never knew or expected to become - the adult in this relationship.

Judging by his boyish smile these days, I sense Dad is content. Perhaps he is remembering playing with a slingshot. His communication skills have been reduced to mumbles so I can only guess what he is thinking. Seeing him happy makes me more accepting. I will certainly continue to accept my responsibilities but no longer think I have to do it all. Life continues. My biggest regret is that I never knew this man and never will.

Today is Father's Day. At this time, I have mixed feelings. I know the day means nothing to Dad yet it still holds significance for me. Dementia is robbing my father of his memories but it can never rob the fact that Dad will always be Dad - he taught me how to tie my shoelaces and how to drive his car.

For his patience and for his courage, as well as for his being the best father he could be, I'd like to sincerely thank him and wish him, "Happy Father's Day, Dad."

Top 10 Tips for Caregivers

How can a caregiver provide the best care for a loved one? Here, in no particular order, are my top 10 tips for family caregivers to remember:

Schedule personal respite time. Allow yourself to take a break from your caregiving responsibilities. Doing this is not selfish. You will return more relaxed and become a better caregiver for doing so.

Learn about your loved one's health condition. With knowing the symptoms and the prognosis, you can better communicate with presiding health care professionals.

Look after your own health. Rest, eat well and visit your own doctor on a regular basis. On a related note, watch how you move, turn and lift as a caregiver. Be gentle to your back.

Accept outside offers of help. When someone within your social circle is willing to help, be gracious and recognize that.

Delegate others to help. Reach out to family members, friends, senior's support services and so on to relieve you of assuming all the responsibilities yourself.

Trust your instincts. That little voice inside of you is, more often than not, correct.

Advocate for your loved one. When your parent can no longer speak for him/herself, it is your job as a caregiver to protect his/her individual rights.

Seek support from other caregivers. Take comfort and learn from other caregivers who have walked in these same shoes. Join a community support group or seek out an option on-line.

Allow ample time to grieve. Grieving is a personal process - no one can tell you how best to grieve nor how long this may take. Understand that grieving may occur at different stages of aging and/or decline.

Keep yourself balanced and organized. Caregivers typically have to juggle their own careers, family lives and outside interests while providing care. Know where the important information can be found, retain business cards of caregiving contats and photocopy the vital paperwork.