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Yesterday our community in Vernon, British Columbia, observed a Walk for Alzheimer Research and for those who are living with Alzheimer Disease and their families. The Ukeleles for Fun band for which I usually play percussion performed for the walkers as they rounded the arena track. I wasn’t able to participate this year as I had an important commitment at my church, but I was there in spirit. I also contribute regularly to the Alzheimer Society’s research campaign and have been doing so for many years. I urge everyone to consider regular donations of whatever they can afford to Alzheimer research. The main reason I am so committed to this worthy cause is that my late husband, Gus Johannesson, had early onset AD, was diagnosed at age 58 and died four years later. At the time of his diagnosis our children were 12 and 17 years’ old. Now my present husband, has been diagnosed with mild cognitive impairment and is getting some help from an Alzheimer drug that wasn’t available when Gus needed it back in 1992. It is not a cure, but can hold off many of the complications from AD for a length of time. I’m hoping and praying that a cure may be found in the near future. In remembrance of Gus, I am sharing a copy of the letter that Alzheimer Manitoba asked me to write for their 1994 campaign.
November 7, 1994
This September my husband Gus turned sixty. We wanted to celebrate as many families do, but the plans for our party were a bit different. His 60th “Toast and Roast” became the retirement party he never had and an affirmation of what he has meant to his family and friends while he is still able to appreciate it.
On the day of festivities we presented him with a book of remembrances gathered from friends and relatives around the world. This book is a tribute to Gus’s life as well as a tool for memory as he copes with his illness.
Two years ago Gus was diagnosed with Alzheimer Disease. I can’t say that our lives immediately changed. The disease doesn’t change your life overnight, but has over a number of years changed every aspect of our lives. To date, the cause of AD is unknown, there is neither cure nor definite treatment; it is progressive and will eventually be terminal.
It is incredible the emotional upheaval we all have been through these past years. All four of us have had counselling and hope that it remains available whenever we need it. The family has found comfort, relief, professional information and fellowship in support groups for adult caregivers, a children’s support group, the early stage support group, numerous educational sessions, and from Alzheimer staff and volunteers.
The Alzheimer Society of Manitoba has been able to provide these services because of people like you. I am happy to have this opportunity to personally thank you and let you hear firsthand how meaningful your help is for my family and many others.
It took a long time to really recognize that something serious was happening as Gus has always been a bit of the “absent-mined professor” type and we just figured he was getting more-so with age. This is not the situation. A man admired for his keen mind, having studied at the doctoral level in systematic theology has now forgotten how to tie a tie or manage the simple task of handling a sandwich. In happier days Gus was a Lutheran pastor giving support and guidance to others. Today he is on the receiving end.
Alzheimer Disease attacks the whole family. We are all hurting, angry, frustrated, scared; dealing with a tremendous loss.
Your roles change. I have had to become in as many ways as possible mother and father to my children and husband, directing all my energies outside of the workplace to the family. The children and I have become caregivers, not easy for an adult, let alone a twelve-year-old and seventeen-year-old. A caregiver’s day is often referred to as the “36-hour day.” That is how we live, each and every day.
As is typical with early AD, symptoms come and go resulting in good and bad days. So far Gus’s skills that are totally gone are writing, public speaking, driving, anything mathematical, and many deductive reasoning processes.
We thank God for the good days, for the patience that we are learning, for on-going medical research, for the help offered by the Alzheimer Society and most of all, for the prayers, love, help and support of family and friends.
Our family includes you when we say “Friends.” You probably don’t know us personally, but as a supporter of the Alzheimer Society you help make each and every day a little bit brighter, a little bit easier.
Once again, thank you for making our lives happier. Please continue your needed support. It is your caring and generosity that makes the difference!
With our sincere appreciation,
P.S. The number of families coping with the devastating reality of Alzheimer Disease is expected to at least double in the next decade.