JOAN’S BLOG – TUES/WED. JULY 27/28, 2010 – THE LOSS OF FREEDOM

As spousal caregivers, we often discuss our isolation and loss of freedom to simply get out of the house and do something or go somewhere by ourselves. To escape the house arrest of caring for a grown child day in and day out. We are not at that point in our Alzheimer’s journey. For my husband and me, I am talking about a different type of freedom – the freedom of healthy spouses, unburdened by child rearing, jobs, and beholden to no one, to pick themselves up – together- and go wherever they want, whenever they wish. To go without having to worry about forgetfulness, confusion, wandering, incontinence, multiple medications at varying times, inappropriate behavior, and angry outbursts.

This train of thought started because my cousin and his wife (the same cousin who negotiated my new car deal for me), who were married one month before us in 1970, left last week for a summer cross country jaunt. Yes, they have reservations at some hotels on certain days, but basically it is an adventure to see the country, sample the golf courses, scenery, wineries, visit their children, and simply be free to be “you and me”. If they do not like a place, they will just leave. If they do like it, they can stay longer.

I remember the thrill of a similar trip – one Sid and I took a year into our young marriage. We lived in Massachusetts, and started off to Montreal, excited that it was just the two of us. No children or pets to worry about; and old enough not to have to check in with parents. No responsibilities. Just us. By the time the trip was finished, we had traveled from Canada to Provincetown, Cape Cod, and back home to Western Massachusetts. I can still feel the excitement of liberation. Off on our own, enjoying the sights and sounds and each other.

Just four short years ago, we took a journey comparable to the one of so many years ago. In the process of moving to Florida, we decided to sightsee along the way. We started out in Massachusetts, Sid driving all the way (He never let me drive). We stopped in Maryland to visit relatives, then made our way down to South Carolina, and spent time touring Charleston. I felt as if I had stepped into the novel, Gone With the Wind. I loved Charleston. On to Savannah, Georgia, and another fascinating tour. Thinking back on it, we should have taken more time, and stopped in more places. How was I to know we would never have such luxurious liberty again?

Four years later, and now my husband no longer drives (although he still insists he is perfectly capable of doing so); is physically disabled due to his advancing diabetic neuropathy; needs to be reminded every 15 minutes of what we are doing today; and forgets what he did or what he was told within those same 15 minutes.

Four years later, and I am now chief driver (YUCHH!), and due to his declining memory and physical problems, find myself unable to leave him for more than a few hours to do errands.

Four years later, and it is the joy of independence – to come and go wherever and whenever we please; that feeling of “arms in the air”  free will to just GO, that Alzheimer’s Disease has stolen from us.

Feedback to joan@thealzheimerspouse.com

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The Alzheimer Spouse LLC
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