Losing Bialystoker home; Losing the love in L.E.S.

BY K WEBSTER  |  Every life matters or none do.

My mother battled with Alzheimer’s disease for over almost six years while living with my family. She has now lived in a nursing home for more than a year. She has severe dementia and her body is twisted into contortions called “contractions.” It’s a yoga pose that she could never have done, even in her youth. She struggles to communicate in a language that she is no longer in command of and a memory that can’t remember. In this last period, she was admitted into hospice care, which means she is leaving this earthly life soon.

Nurses and aides now do what I used to do. They daily perform the most intimate tasks of care. Their generosity and compassion is boundless and unstinting. They have become family to us. They go the extra mile on her behalf. I love these women with all my heart. In the words of that football coach: “I’d go to war with these [women]”. And they are in a “war” with bedsore wounds that could make a soldier cringe. Their goodness is exploited. They know it, but continue to make the human choice to stay big-hearted. Most come from cultures that still think that caring for elders is a sacred obligation. Lucky for us that they do.

So far, she has beaten the odds. She pulled out of the last decline, her wounds healed (the doctor could not believe it). We strung Christmas lights in her room and kept adding to them every day until now we are in danger of blowing a fuse. They are spectacular. She wakes up and her face brightens and she says, “Oh my,” or “Those are beautiful little adults.” The words aren’t “right” but they convey the message clearly.

It’s tempting to laugh when she makes “mistakes” with the phrases she comes up with. But we don’t. It is such an openhearted effort. The kind a small child makes: tender, not cautious or careful, but daring and wonderful and human. It is a gift to be with her. It’s a pause from the world of “important business.” We get to remember how astonishing life is. It has never been clearer to me that each of us has a chance to be fully alive at any moment. With dementia you live in the moment because the last moment is forgotten — though the feel of connection remains. Present joys are precious — what Virginia Woolf called “Moments of Being.”

What I find most heartening is her reaction to people who enter her room. She says, “I love you” or “I love him” or “You are my favorite dress.” She is pure love. Increasingly, any bitterness, sorrow, reproach drops away and she is left with pure love. It’s shockingly beautiful.

I want her to have a chance at her own fight to be alive “even” in this condition. (Ever notice the arrogance of the phrase “diminished” existence?) She seems to want to. And every morning that she wakes up with that twinkle in her eye (that easily matches that of the Christmas lights) is a victory. A bit of life well lived.

I was inspired to write this after seeing Millie Munschein’s photo in this newspaper’s Feb. 9 article “Last-ditch effort to landmark L.E.S. Bialystoker Home.” The image showed Millie speaking at an Aug. 2011 rally to save her home, the nursing home.

When I see Millie Mundschein I see my mother and your mother — all of us someday. I see the closing of the Bialystoker for what it is: a humiliating defeat for our community. And a shameful abuse of the elders who lived there.