JOAN’S WEEKEND BLOG – NOVEMBER 10/11, 2007 – LESSONS FROM THE CAREGIVING CONFERENCE

Yesterday, as many of you know, Sid and I were panelists at a Caregiving Conference at North Broward Medical Center in Deerfield Beach, Florida. The purpose of our panel was to give the conference attendees (nurses, social workers, doctors, support group leaders, as well as caregivers), an honest, soul-baring glimpse into how Alzheimer’s Disease affects the lives of both the caregiver (in our cases – all spouses) and the AD afflicted – our future plans; emotions; relationships; self –esteem.

As I mentioned in the 11/7/07 Blog, our social worker moderated the panel, asking each of us questions about how AD had affected us, and what message we wished to convey. Everyone on the panel performed well, and after we left the stage, each of us was complimented equally by the audience members. But I am going to focus on my part, because of its relevance to this website.

I talked about my utter shock and confusion when I discovered that Alzheimer’s Disease kidnapped by beloved husband and exchanged him for a stranger, who was prone to irrational behavior, temper tantrums, language confusion, and a complete inability to be reasoned with. I talked about Alzheimer’s Disease changing the relationship dynamics from wife/husband to mother/child, and how neither one of us was comfortable with the new roles. I talked about how there were no support groups and resources that dealt specifically with Alzheimer’s Disease and spousal/relationship issues, so I started my own – this website. As I was speaking, I saw heads vigorously nodding up and down, and heard voices asking the address of the website (In my nervousness, I neglected to announce the website address).

It was what occurred after our panel discussion was finished that surprised me the most. There was a break after our participation – everyone was supposed to go across the parking lot into the section where all the vendors were displaying their products and services. I didn’t make it over there until the last five minutes of that portion of the program. I was continually stopped by spouses who wanted to share their stories with me, and tell me how much they related to what I said.  Although I was astonished at all of this attention, it reaffirmed what I have known from the beginning of my AD journey, and the reason I started this website – spousal caregivers are starved for affirmation of their emotions and experiences, and they need supportive resources. I felt gratified and fortunate to have contributed to this need.

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