JOAN’S BLOG – WED/THUR, JAN. 27/28, 2010  - AM I AN OSTRICH?

Yesterday I wrote that in the case of our AD spouses, sometimes “Ignorance is Bliss”. It is not necessary for them to know the details of their decline, as it will sadden them for the moment, and they will forget it anyway.

It is our job to learn the details of what lies ahead and to plan for them. We research and learn about Alzheimer’s Disease/dementia, so we know what to expect and how to handle it. We learn about the forgetfulness, confusion, shadowing, pacing, sundowning, rages, incontinence, blankness, and more, until our brains are Alzheimer’s encyclopedias. 

We learn about and research the various types of facilities in which our spouses may need to be placed – Home Care, Independent Living, Assisted Living, Nursing Homes, Locked Dementia Units. And we learn about the means by which to pay for these services. We set up living wills, powers of attorney, health care proxies. By the time we are finished preparing, we are Super Knowledgeable and Ready Caregivers.

I certainly have armed myself with plenty of knowledge and preparation, but do you know that I have not toured the Dementia Unit in the Assisted Living Facility next door to my Independent Villa neighborhood?  I have lived here for 5 months, and have not set foot in that section of the building. Nor have I called the woman in charge of the department, although I have been asked by management to introduce myself and offer to speak to the support group she facilitates.

Of course I know that if he does not die from something else first, my husband will end up as his grandmother and aunt before him – a blank shell in an infantile state. But I cannot bring myself to tour that section and actually SEE his future. I have been to two dementia facilities in the last two years. I was nauseous when I left the first one, imagining my husband living there away from me, unaware of what was going on around him. The second one was a top notch, high end, expensive facility. Their dementia unit was called a “neighborhood”. They had built a circular courtyard for “pacing”.  It had flowers, benches, trees. It was lovely. Our member, Tony, whose wife passed away from EOAD at the age of 43, was with me during the tour. I was so shaken up, he took me to one of the benches, and we sat there while everyone else finished the tour. I could not bear the thought of Sid pacing around the courtyard, emptied eyed and confused. I just could not bear it.

Does this make me an ostrich with her head in the sand?  Shouldn’t I be touring a variety of facilities? Particularly the one next door. Sid is not even close to being ready for a facility, but all of my research has told me that his condition could change in a minute. It has happened to many of your spouses – you have told us so on the message boards.

I have been admonished by one acquaintance to get over it. It is part of life, and you just have to face it and deal with it. I am aware of that, but in this Alzheimer journey on which I have been involuntarily thrust, I take one small step at a time. I have learned; I have shared my knowledge; I have prepared by moving to an Independent Living Villa “sooner rather than later”; I have made one adjustment after another as his symptoms change; I am in the process of planning on how to pay for placement. One step at a time. I am just not ready to walk the halls of a dementia facility and see my husband’s future. Not yet. If that makes me an ostrich, so be it.

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