JOAN’S BLOG – FRIDAY, SEPTEMBER 5, 2008 – THE MOST DIFFICULT STAGE

Yesterday’s blog dealt with the childhood developmental stages (Our Spouses, Our Children) as they relate to an Alzheimer patient , but today I just want to talk about the beginning, middle, and end periods of Alzheimer’s Disease and the emotional impact each one has on the spouse. The questioning of which stage of Alzheimer’s Disease is the most difficult for spouses to deal with was mentioned on the Message Boards yesterday, but I had been thinking about it for a long time.

In talking about the different stages of Alzheimer’s Disease for the purpose of this blog, I mean:

The beginning – when we are hit broadside with the personality, mood, relationship, cognitive, and memory changes. When once we find out that Alzheimer’s Disease is causing all of it, we have to accept that our relationship and spouse will never be the same.

The middle – when we understand that decline is inevitable; that we must adjust to each new change – increased memory loss, loss of recognition, incontinence, increasing dependence upon us for feeding, bathing, dressing; and find ourselves living the in the “new normal” – the Alzheimer’s World.

The end – when we have to watch our spouses deteriorate to the level of infancy, and truly leave us forever.

Every stage has its tears, its heartaches, its grieving periods. Each loss of function brings new pain. But for me, and all of the newcomers in my support group, many of the newcomers on the message boards and e-mails, and most of the newcomers I meet at conferences, the beginning is the hardest.

Although I have not yet had to cope with loss of recognition, incontinence, or ADL (activities of daily living –bathing, feeding, etc.) factors, I do consider us in the middle, by virtue of having survived (more or less) the beginning shock of the personality and mood changes. I do not LIKE having moved on to the middle - living in this Alzheimer’s World. I do not LIKE that this is my “normal”. But without a shadow of a doubt, I feel that the confusion,   the unknown, the shock of my husband turning into a stranger, in the beginning was, for me, the worst.

That out of the blue, completely unexpected “punch in the gut” realization that our loving, life-long relationship was deteriorating; that Alzheimer’s Disease was stealing the partner/lover/spouse with whom I had shared my life, that our marriage would never again be the team of “US” that it had always been, was for me, the most emotionally devastating experience I have ever had to endure. The “out of character” venomous anger and rages that I was forced to tolerate in the name of Alzheimer’s Disease, almost destroyed me emotionally and physically. They dragged me, once and for all, out of the “beginning” into the “middle”, - the acceptance of living in this Alzheimer’s World of Hell. No escape. No “get out of jail free” card. We’re here now and have to make the best of it.

Maybe I will feel differently in this middle period, when the next blow strikes – the first time my husband does not recognize me; when he forgets how to use the telephone; when he forgets our son. But as tough as these will be, at least I will have known they were coming.

As for the end, I do not think about it. Everyone reacts differently. Some of you have felt relief that your dear spouse’s suffering was finally over; some of you grieved so long and hard for the spouse lost long before death, that there was no grief left; some of you felt the loss profoundly. Maybe this was the worst period for you.

I have no answers, only my own opinion. I would like to hear yours. Please post your comments under the Message Board Topic: Which period of the disease has been the worst for you?

©Copyright 2008 Joan Gershman

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