Alzheimer's disease · Behavior · Caregiver · Family

The wedding / June 24, 2006

Today was the wedding day. Last night I hemmed the pants to my mother’s new pantsuit, and then I set her hair with the new sponge rollers I’d bought. At some point she began to confuse today’s event with a graduation, and wanted to know whether all the students would be there to get their degrees. I had to correct her several times on this point, and I’m not sure why she made the mental shift to a graduation. Of course the newspaper has been chock full of high school and college graduations, and maybe she merged the two. My cousin, the groom, had asked my mother in better days if she would bring some flowers up to the altar in memory of his mother, her sister, during the ceremony. As her dementia worsened she began to obsess about this request and it seemed to take on a life of its own: I think she equated walking up to the altar with the flowers and going up to a podium to get a degree. Despite my assurances that she was no longer expected to walk up to the altar she continued to worry.

But last night she seemed pretty sanguine about it all, and I hoped this would carry over to this morning, but it was not to be. I was very careful not to be pushy–I brought her her pills and reminded her that today was “the day” (she had actually forgotten). Mornings are not good for her under the best of circumstances and I could tell at that point that she wasn’t going to go. Oddly enough, she seemed more alert than she usually is in the morning, but she just did not want to go. And I’m learning that when the emotional course is set, there is usually little hope of renavigating.

To make matters worse, my sister is–as I mentioned to my friend Paula–establishing some “behavioral distance,” which is something like the sibling who is not in the same zip code but still has a lot to say.  Liz, I know, is having much trouble facing my mother’s illness, and on top of that, she has some longstanding demons to fight.  But her behavior makes it harder for me.  For example, I ended up attending the wedding alone today not out of sheer obligation but because these are family members who mean a lot to me and who are involved in my mother’s life.  The groom gave the eulogy at my father’s funeral, even though he’s from my mother’s side of the family.  My sister had decided sometime during the week that she just wasn’t going to go to the wedding, but she did not tell me.  I called her last night (when I had hope that the three of us would attend) and that’s when she admitted her plans.  Now this is someone who calls me for every little thing–but not for this?  On top of that, because I had to leave my mother alone I left the wedding early–which made me sad because it was an additional “slight” in my mind to the family, the first being that my sister was a no-show.  She might have offered to stop by and hang out with my mother for awhile, but all she’s offered is an odd silence.

It seems to me that a secondary stress of caregiving nearly always involves sibling stress. The pressures of being on the frontline make the “primary caregiver” preternaturally aware of how each piece fits into place, and how much time it takes to do the fitting, something secondary caregivers aren’t aware of unless they make the effort to know.  I wonder if there are situations where responsiblities are truly shared?

Oh, the wedding was lovely.  As I’ve mentioned, it took place in an old Baptist meeting house on a beach road leading to the South Ferry landing in Narragansett, Rhode Island. Today was an exceptionally rainy day but it let up just a bit after the ceremony, and we could all schmooze in front of the church.  I guess because I’m losing mine I feel particularly sensitive to family these days.  My parents’ generation is almost gone and I’m more inclined to stay close to the cousins I have in the area.  Both parents came from large families, so I have quite a few first cousins, and now they have families (grandchildren, in some cases), and it’s nice to get to know them as adults.  What used to be an ordeal for me (family gatherings) is now important, which is why I went to the wedding today.  Again, it comes down to the past–the shared past that also holds the present together.

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