JOAN’S BLOG – MONDAY, OCTOBER 8, 2007 – One Year Since the Diagnosis – How Our Lives Have Changed; How We Have Coped

 This month is our one year anniversary. No, not our wedding anniversary – the anniversary of those words I had been dreading for 3 years – “There is definitely dementia, and 70% of dementia is caused by Alzheimer’s Disease.” I was reeling. After they whisked Sid off to have his brain scanned and wires hooked up to it for an EEG, the doctor put his arm around me comfortingly and said, “You’re not really surprised, are you? With your background (Special Education and Language Disorders), you knew.”  Of course I knew something was seriously wrong, but both the neurologist and neuropsychologist we had left up in Massachusetts, just before we moved down here to Florida, had insisted it wasn’t Alzheimer’s Disease.  I didn’t believe them, and had we not been moving in a couple of months, I would have taken Sid into Boston to Massachusetts General Hospital.

So here we were at one of the top Memory Disorder Centers in Florida, being sent home with this devastating diagnosis, a prescription for Aricept, advice to contact the Alzheimer’s Association immediately, and a life altered forever.

I had been living for almost 2 years in a confused state of Hell. It is all chronicled in the Blogs I have written for this website – the personality change; the irrational behavior; the temper tantrums; the inability to reason; the forgetfulness; the anger; the frustration; the misinterpretation of everything I said; I would open my eyes in the morning, look over at my husband’s face, deceptively peaceful in sleep, and shudder at the thought of what the day would bring when he woke up. He was a stranger to me, and a hateful one at that. I missed the husband I adored. Where was he? What was happening to us? I didn’t understand any of it.

So I read, I researched, I learned. I learned that what was happening to my husband was a manifestation of Alzheimer’s Disease. We joined a Support Group, and met people who showed both of us that we were not alone – that other’s were going through the same struggles.

Because no one talked about the havoc this disease could wreak on a marriage, I started this website to help myself and others cope with the unique issues faced by spouses- the loneliness; the hurt; the anger of watching our life partners fade away little by little, piece by piece.

So where are we in our relationship 4 years after the change was noticed, and one year after the definitive diagnosis?  Right now, we are in a peaceful place. I am not delusional or in denial – I know things can change in an instant with AD. But something very interesting and unexpected occurred in our relationship after I started this website. Sid does not process oral language very well at all; he misconstrues so much of what is said. I could talk, explain, plead, in a futile attempt to get him to understand how his tantrums were hurting me and our relationship. As I said –FUTILE. Then one day, he started reading my Blogs. He said he can read what I write at his own pace; re-read it as many times as needed to understand it. Through my writings, he has come to truly comprehend what has been happening to him, to me, to us. Since he has been reading what is in my , he has made a Herculean effort to control his frustration  and tantrums. Seeing how hard he is working, and how exhausting it is for him, I in turn, am making the supreme effort to be patient; not to become angry with his instant forgetfulness; impulsiveness; and neediness.

We have come a long way in the year since the diagnosis. As I have written before, we do not have the same relationship we had for the first 34 years of our marriage.  It is gone, and is not coming back, a heaviness on my heart that I have to bear. The dynamics are different – as much as Sid hates this analogy, I am often mother to child; teacher to student; rather than wife to husband. But we’re hanging in there. We love each other, and we’re both learning to do the best we can as we stumble together through this Alzheimer journey that neither of us, nor any of you, voluntarily signed up for.

Feedback to joan@thealzheimerspouse.com

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