A year later when I asked him how he was feeling one day and he told me, “less than minus.” A few months ago he told me, “I’m stuck.” Yesterday when I asked him what I could bring him from the store he told me, “children.”
By Mary Gazetas
Alzheimer's Reading Room
If you’re like me, I think about this journey pretty much all the time.
It’s hard not to when I see my husband’s things in the house. His books, papers, clothes and shoes that I’m reluctant to give away or get rid of.
Then his bicycle, tennis racquets, ping pong table and favourite other things that define who he was.
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While I’m in our house I also think a lot about how he is doing in a residence that is about 15 minutes away. I imagine what he is doing, thinking and how his day is going. I visit him every day. Short visits. Long visits.
And when I can, I escape to have some restorative Mary time. I have done some amazing trips in the last two years. When he was living here in the house in 2008, 2009 travel was a very anxious and unsettling experience for him so we hardly went anywhere anymore.
My “escapes” have included a road trip to the California desert, an off-the-grid stay in a village in Baja – Cabo Pulmo, and an artist’s trip to Guatemala, a visit to the Nevada desert amazing playa - plus many short trips to go fishing and camping with my sister.
He doesn’t know when I am not there and I totally trust that the staff and other families are keeping a watchful eye on him to keep him comfortable and happy.
Yet how do I cope with having him and his situation on my mind? Who do I share my feelings and thoughts with?
I write a lot of e-mails to my twin sister and my two daughters who live far away. We phone each other at least two, three times a week. They are like my A Team because I need their love and support to share this emotional journey with.
The other thing I do is I write a journal!
Back in the summer of 2009 when I was struggling with this sudden change in our lives when he had to go into a 24/7 extended health care facility it was my grief therapistwho suggested I write a journal.
That was something I could immediately connect to. I have been writing journals for years. In my bookcases and beside my desk there are paddling, travel, photo journals. Artist journals. I love sketchbooks and blank books to take pen to.
I now have three thick journals filled with my words about what has happened that document my husband’s days, and my days too.
In my opinion there are no rules to journal writing. Make it a medium you’re comfortable with. Don’t be afraid of the blank page.
My journals include handwritten notes. Sort of semi diary/scrapbook entries. Thoughts. Worries. Some objective. Some more subjective. Photographs. Glued in emails from family, friends and the residence staff. In the last two and a half years I have used a lot of glue sticks!
My favourite entries include words my husband has said to me in conversations since he doesn’t live here anymore in the house beside the river with me and Hugo the dog.
When he first went into a steep decline I asked him what I could bring from home. He told me he wanted a “paragraph.” Another day he told my sister, Phoebe and me that “the table of contents was missing.”
A year later when I asked him how he was feeling he said, “less than minus.” A few months ago he told me, “I’m stuck.” Yesterday when I asked him what I could bring him from the store he replied, “children.”
All poignant words that go into the journals.
Other best entries are from the rare days when he picks up a pencil or pen and creates a drawing. His drawings are I understand fairly typical of a person living in the late stages of this disease. For me they are fascinating.
When I fill the pages it is for me like a form of meditating. It’s a quiet time to reflect.
And, admit things like – “wow that was an amazing day.” Or wow, “he is still here – hello you. “
I journal the stories about his world living with Alzheimer’s. Mine too. It gives me peace.
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Original content Mary Gazetas, the Alzheimer's Reading Room