I receive the AFTD newsletter and saw this article in it about a husband who has FTD and the wife's experience. I am reposting for your reading.
From Catherine Montgomery
Finding Companionship in a
The hours when there is no communication between my husband and me make
me wonder if this is what it is like to live with a deaf person. Robb,
however, is not deaf. He has FTD--Frontotemporal Degeneration--a
dementia that that has taken away his ability to converse. I call it
living in a vacuum. As the dementia has progressed, one by one, the
many and varied interests of his have dropped out of his memory. The
creative gifts have also disappeared. First the gift of surgical talent
was stilled, and then it was his ability to design and create stained glass
pieces. All memory of that artistic era has disappeared. He used to be
full of ideas and had opinions about many subjects. Now I guide him
through the day with a simple routine of sleeping, waking, eating and
dispensing medicines. We do watch TV, and he chooses music to play on a small
DVD/CD player. The one outdoor activity, which marks each day, is
feeding the birds. He no longer can tell me the names of the birds or
identify the calls as he used to do. There is one thing he can do well
and that is to beat me at Gin. We slowly play several hands after
dinner, and he continually outplays me.
Recently Robb was asked, "How did you decide to become a
podiatrist?" Unable to recall his decision, he looked to me to answer
the question. Listening to me as I related the events, which led to a
discussion of his life's work, it was as if he were hearing it for the first
time...like it was a story about someone else.
As I do not see the situation improving in Robb's condition, I must make a
friend of the silence. There have been times as a young mother, raising six
children, when I would have welcomed some quiet. Little did I know how
a day without sociable conversation would make me work to keep engaged with
the world around me...trying to interpret what Robb struggles to say takes
all my concentration and sometimes we just give up.
I am really glad that there are activities that I can do to fill the hours of
quiet. It has allowed me to take a renewed interest in planning and
preparing meals, to write to family and friends, and to begin painting once
more. We have family and friends who come to visit, and even though Robb does
not contribute to the conversation, he is a part of the group.
As our children come to visit us, Robb no longer struggles to keep back tears
when they leave. The first time this happened I asked him, "You
don't think you will see them again, do you?" He nodded yes.
Then we both cried. Tears are really helpful, and we do not hold them
back. One of the precious moments we share now is tears. I would
never have expected this to have the meaning it does.
I share these various ways I can help my beloved husband with the hope that I
may help someone else who will walk along the same path.
--an exerpt from Memory is a Fragile Thing
- Reflections of my life experiences from childhood to the present. ©
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