“That’s my arm, no that’s my foot, you have to let go of my arm, it’s my arm.” Ah the joys of winter, putting on all that gear. James cannot distinguish between his arm going into his coat or grabbing my arm to put into his coat. I suppose I could wear contrasting colours to what he is wearing. And I do have contracting colours to help him - his plate, bowls, cups are red, easier for him to see. We have learned to adapt to the constantly changing needs of James’ Alzheimer’s. For example, James enjoys talking to his friends in the mirror, but like in any friendship there can be disagreements that can make him sad or angry. Most mirrors are now covered up, with one on the main floor available for him to converse with. It is mind boggling how fast the early onset Alzheimers progresses.

From five years ago being able to have somewhat of a conversation with him, to him now speaking mainly gibberish with one or two words we can understand. When we speak to him, we keep it extremely basic. James has zero ability to do any self care. At times that has left my family and me in a situation that we would never have imagined, doing this kind of self care for our father/husband.  

I listen to his voice mail message sometimes. I just want to hear his voice, the person that he once was, to get comfort from his voice, the familiar cadence that is no longer there. I was listening to a conversation about the loss of a loved one  and how they grieved the loss especially during holidays and birthdays. I felt their grief but I didn’t feel like I could add to their conversation because my loss is ambiguous. A term used when someone experiences the loss of a loved one who is still alive but mentally or emotionally absent. With Alzheimer’s, they are no longer the person you knew, which creates a unique and complicated kind of grief. Each celebration for me is a reflection of what he is like now, what he was last year, and what he will be like next time.

I actually do not like to write about this, I find it very personal.  I do it because I hope to give an understanding of what the disease is like and to raise funds for the Alzheimer’s Society.   It has been  challenging times this past year, and I am so grateful for the Alzheimer’s society support.  They have given education and guidance to the various PSWs that support my love.  Listened and advised me on negotiating difficult situations.  Alzheimer’s society offers various workshops to guide caregivers with their loved ones.

I am so grateful we have our own local Alzheimer’s society. We hope, when you are allocating your support to the various charities that you donate to, you consider supporting the Alzheimer’s society, as my family and I appreciate the work they do for us.

My children may not call him Dad anymore, they are his caregivers, he is affectionately now called James, Jim or Buddy. I know we meant the world to him, and his love will remain with us forever.