JOAN’S WEEKEND BLOG – JUNE 25/26,2011 – TRADING PLACES

As many of my blogs and your message board posts attest, meeting someone else’s constant physical and cognitive needs can be FRUSTRATING as well as exhausting. 24 hours a day, 7 days a week of not only waiting on someone, but answering repetitive questions, explaining the simplest instructions one step at a time, multiple times, and tending to every one of their physical needs, can make you want to run away from home. Screaming as you go. We have all felt that way at one time or another as spousal caregivers.

During my recent surgery recuperation and ensuing mystery illness, I experienced two days of being “on the other side” – totally dependent upon my husband, of all people, to meet MY needs. It was the most helpless and frightening feeling I could ever have imagined. As I explained in my last blog (see below), we had two days alone. My sister had gone home, and my aide’s car was being repaired. Being in the “Independent” neighborhood behind the Assisted Living facility affords us many privileges, but aide services from the ALF are not part of them.

There I lay, feverish, one armed, in pain, and only able to lift my head from the pillow to throw up. Sid was a wreck with worry, not only about me, but because he knew he did not know what to do without me telling him. And I was horrified – The scenarios that were going through my head were imprinted on my brain from the mystery/thriller novels I had been reading. I could picture myself found by the police days later, dead on the floor, mired in my own filth, while my cognitively impaired husband was wandering around the house sobbing, not knowing who to call or what to do. Somewhat melodramatic, I admit, but I was SCARED. I was in a vulnerable position, totally dependent upon someone else to meet my physical needs, and it put me in a panic. Especially since the person on whom I was dependent was incapable of making any independent decisions.

Which brings me to the point of this blog – trading places, which I was forced to do. No matter in what stage our spouses with AD are , they KNOW, on some level, that they are completely dependent upon us to take care of their every physical and mental need. They have to be as frightened as I was, as I lay in bed, reliant upon someone else to guide me the three steps from my bed to the bathroom. Is it any wonder they cling to us, shadow us, demand to know our every move?

In earlier stages, I would imagine the anger and verbal abuse spewed at us comes from the sudden fearful realization of their dependence, and their resentfulness of it. In later stages, their clinginess comes from the regression to childhood that is part of the disease. As with any child, they fear the loss of their support system.

Don't I always say that one learns from every experience?  This experience was no different. I learned what it feels like to be helpless and dependent. It is terrifying. Maybe this will help me have a little more empathy towards my husband during his demanding and angry periods.

In the meantime, although my shoulder is healing well, I am still sick from something that is baffling my primary doctor and all of his tests. I am still dependent upon my aide who comes 3 times a week. What would I do without her? What would our spouses do without us?

MESSAGE BOARDS: TRADING PLACES

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