JOAN’S BLOG – THUR/FRI, JUNE 4/5, 2009 – I FELT THE WALLS CLOSING IN

None of us truly understands the difficulty of any stage of Alzheimer’s Disease except the one into which our spouses have pulled us. We can offer empathy to those who are in later stages than us; we can offer advice to those who are in stages we have passed; we can offer a hand of support to all. But just as outsiders can never know what our lives are like, neither can any of us know a stage until we are in it with out spouses.

I am currently lucky that I can leave my husband alone at home for a day, and not worry that he will wander away, use the den as a bathroom, or not be able to feed himself. He is high enough functioning that although he does not LIKE to be stranded at home alone, I know he would be fine. But yesterday, for a brief moment, I had a personal glimpse of the world in which so many of you are imprisoned. I felt the walls closing in on me and I panicked.

Next week, I am scheduled to attend an Advocacy Training Retreat from Friday morning until Saturday afternoon. It is 50 minutes from my house, but I will be staying in a hotel, because the schedule is full, and it would be exhausting to drive back and forth late at night and early in the morning. Sid can stay home alone for that amount of time, but I do not think it is fair to leave him marooned here by himself. So I asked a non-Alzheimer friend to come to spend the day with him on Friday. Although last week when I asked him, he said his schedule was clear unless something came up, yesterday when I spoke with him, he said that something had come up, so he would not be able to spend next Friday with Sid.

That is when reality hit. I thought – what am I going to do when the disease progresses to the point that he cannot be left alone? I am not, nor ever will be, retired and able to stay home with him all day every day. I have to work, and although most of it is done from home, there are times when I have to do speaking engagements and attend conferences. Sometimes overnight. Since there is no money for me to hire someone to stay with him, it has to be me. I felt what you who are 24/7 caregivers must feel – the walls closing in on me. Where will I turn? How will I go out when work requires it?

My blogs tell the stories of the stages I have struggled through, kicking and screaming. I can give experienced counsel to those of you who are behind me, and support to those of you who are ahead of me. That is what we do here – we learn from each other’s experiences. But unless we are in the stage, or have been through it, we do not know. I found that out yesterday, when I saw and felt the future.

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