In a twilight zone

On Facebook today, I saw messages from children of all ages to their mothers, wishing them a happy Mother’s Day. Several were accompanied by photos of mother and child with arms around each other and smiles on their faces. Other Facebook friends posted remembrances of their deceased mothers. I wished I could have posted something but I did not know what to say because the situation for me and my siblings is betwixt and between—our mother is alive, but she has dementia. She is in a twilight zone and in many ways, we, and our relationship with her, are also in that twilight zone.

I will not pretend that I have been close to my mother for the last fifteen to twenty years. She and my dad were wonderful parents when we are growing up and I know I was lucky  to have the wise, disciplined, and loving parenting they provided. But over the years, my mother changed emotionally and mentally and her refusal to acknowledge or seek treatment for those changes was draining. Although I spoke with, emailed, and visited her, I removed myself emotionally to avoid being sucked down with her. But however complicated my adult relationship with her has been, I would not wish what has happened to her on my worst enemy.

When my brother became her guardian a year ago, there was a faint hope that our mother would be able to move from her ‘independent with in-home care’ living situation, which had become untenable, to assisted living, but within a matter of weeks, it became clear she was not a candidate for that. Her physician and the geriatric social worker we consulted recommended a local Alzheimer’s care center. Even then, we hoped that after the initial evaluation period, she would be able to move to a unit that was more like assisted living than the unit she was admitted to, and is in now, but that was not to be.

We have learned, both from the staff and our own experience, that dementia is not reversible; that the most one can hope for is to halt it in its tracks or slow its progress. Thanks to her doctor, the line was held for a few months, but now, our mother is slipping away before our eyes. Given some of her other issues, I am not sure she and I ever would have had any kind of resolution or reconciliation in our relationship, but now there is no chance, nor will there ever be. All we can do is watch over her, make sure she is safe and well-cared for, and appreciate that for now, she usually knows who we are when we visit.

So today, my sisters and I visited her with cards and flowers and cupcakes and gave her pretty mint-green sheets for her bed. We sat around a table in the dining area, talking with her, sometimes talking around her because she zones out easily. Before we left, my brother-in-law took a photo of us three girls around her. Now I look at that photo and my heart breaks that the vibrant, intelligent, articulate woman I knew is no longer with us.

Saying goodbye

A boyfriend once told me of a t-shirt he’d seen imprinted with a cartoon. In the cartoon (by Jennifer Berman), a banner saying ‘Adult Children of Normal Parents Annual Convention’ is displayed over an auditorium empty except for two people. I said ‘that’s me’ and he replied, ‘yes, it is.’ My parents weren’t perfect, but they were good parents and I knew that even when I was young.

This comes to mind because I’ve spent the last couple of weeks with my two sisters, closing out my Mom’s storage spaces. It has been a sad process in many ways. For one, by closing the spaces, we acknowledge that our mother will not live independently again.

When she moved from her apartment into respite care three months ago, we hoped that she would eventually be able to move to an assisted living facility, so we stored the contents of her apartment. In the month my mother was in respite care, it became clear that she was not a candidate for assisted living and would need fewer of her possessions going forward. As much as we would have liked to postpone the process of disposing of her belongings, we had the choice, as my brother says, of using the money we were paying for the storage spaces for her to have a good life or for her possessions to have a good life.

The process was also sad because it reminded us of a time when my mother was a different person. It is not just the dementia that has made her different than the mother we knew as children, but something else—mental illness, soul sickness, whatever one calls it—and it has been present for many years. Now her mind and body have failed her and to some extent, taken away her ability to come to terms with whatever it is that ate into her soul.

In May, as we began the process of sorting through what was already in storage and going through her apartment to weed out what could be discarded instead of stored, I came up with the idea of taking photos of some of the possessions that held memories for my siblings and me. The original photo I envisioned was the four of us with my parents’ bedroom suite, but my brother was not able to join us this past couple of weeks. However, the idea had by this time evolved into a series of photos that would capture in some way the mother we knew as children.

In coming up with the props for the photos, I remembered my mom as the woman in a pink formal dress with long gloves, on her way to a dinner with my dad. I was impressed all over again with her decades-long commitment to Girl Scouting—she was a troop leader, a trainer, a lifetime member of the Girl Scouts. I was in awe of the woman who spent her 50th birthday in New Zealand, having applied for and been granted a scholarship by Rotary International to study overseas for a year. I paid tribute to the woman who, at the age of 69, trained for and completed the Danskin Sprint Triathlon.

In different ways and on different paths, all of us have had to come to terms with saying goodbye to that woman but I want to remember her, even as I deal with the reality of who my mother is now.