You are not alone: a caregiver's journal
In 2012, Anne Hopewell founded the Memory Boosters Social Club in Waterloo, Ontario. The club provides a warm and supportive place for people living with dementia and their care partners to relax and have fun.
Anne's husband Ron is living with dementia, and she has shared two very honest and beautiful stories with us. We hope that they will give others comfort that they are not alone on their care partner journey. Thank you, Anne, for opening your heart to help others.
The reports are in. Tests, x-rays and scans done. Our interviews are complete and we are awaiting the doctor for the diagnosis.
My spouse Ron and I know something is not quite right and we are worried. This man I have shared so many years with - the father of our children, my lover, confidant, best friend and companion - has difficulty remembering so many things. We know there is a problem.
We hear the words we have been dreading: "You have dementia”.
The rest is a blur. I know I am being told many things, but I have shut down. My heart is broken and my soul is crushed. I simply don’t want to hear any more. I am not ready to deal with this or face what the future holds. THREE WORDS and our world has been turned upside down.
Plans for a happy retirement, travel, freedom from raising children and holding down a job disappears like melting snow on a warm April day. Somehow, we get home with me behind the wheel, choking back the tears. Because this is one of the first things you lose: the ability to drive. Even though Ron had driven to our appointment quite capably, he no longer can. It is the law. THREE WORDS and a couple of hours and Ron has been reported to the Ministry of Transportation and his license is revoked.
I sink into a deep depression and the tears flow. How cruel, what a devastating blow. Ron feels it even more but cannot release his emotions and becomes silent. I feel a deep sadness for him and helpless to know how to help him. Little did I know how often the sadness would return again and again over the years. But with time comes acceptance and we move forward. We adjust to our "new normal" and begin to see a glimmer of light and hope in the distance.
After a very challenging winter, we are enjoying some lovely spring days and I am restless. It has been a hard several months. We have lost some family members and friends, and two women that are very dear to us are battling cancer. It has affected me deeply and there are few I can share my feelings with, least of all my partner who is barely aware of the deaths.
I am in need of a retreat, where I can go to sit and relax and play my music. A place where I can watch the TV shows that I like without interruption. This is a bit of a problem. We live in a spacious apartment but with no place that I can call my own. I think that a little personal space may be something we all need.
I pondered what I could arrange that would work for both of us. Ron is becoming insecure and always needs to know where I am. If I am doing something in another room, after a very short period he is on the hunt for me and relieved when he finds me. This is a new change that we have to adjust to.
I had an idea for the perfect solution! I would get a new chair for the bedroom and toss the old, uncomfortable one out. I found the correct size for the space on my side of the bed, where I have a ledge that I can put my things on. The sales person knew exactly what I wanted and found the right chair for me.
I am in heaven!! When I sit in there, it is so peaceful and comfortable. Ron is also pleased. He can come to check in when he gets anxious and is reassured that I am there if he needs me. Who knew that the simple addition of a chair would work so well!
There is an added blessing, quite unexpected and delightful. Many years ago when my babies were born, we had a rocking chair in the nursery where I would do the 3am feedings and quietly bond with my newborns. The house was quiet and peaceful and I loved those days. When the girls were growing up, there were many moments in the rocker where I fed them, comforted them and read them stories. When I am sitting in my chair today I think back to those precious times and I am at peace.