living the long goodbye

Though often applied to Alzheimer’s disease, the long goodbye also describes other dementia-related conditions. Since I last wrote about my mother, her capacity to care for herself has declined. Fortunately, she is physically able to take care of the basics, but mentally she is having a difficult time. I cannot imagine dealing with the level of memory loss she now has – she often doesn’t really know where she is. She still knows me, which is a blessing, but sometimes she thinks I’m her sister rather than her daughter. She mixes up her brothers and her sons. She frequently tries to remember who is alive and who has died. She’s 92 now, so many of the people she once knew have died.

Her memories are a scramble now. She remembers pieces of stories but mixes them together – I know because I remember the versions from years ago, before she lost her memory. Sometimes thoughts are randomly spoken and it’s unclear how she got to that particular line of thought or what prompted her to share. If it wasn’t so sad, I could appreciate the creativity of making these new stories – it’s really fascinating to see what gets linked to what. Often these stories serve to comfort or soothe her when she feels most vulnerable.

All of these changes mean that I need to be more patient. When she first came to live with me, I would try to strike a balance between correcting her and letting it go. When I corrected her, she appreciated it and would say “oh that’s right” or something similar. The gentle corrections seemed to help keep her on course. More and more now, I let it go. It’s now upsetting to her to know that she has it wrong and, really, what does it matter? Instead of wanting to know the real story, she cries and is frustrated and feels stupid (her word) when she is wrong. Who needs that?

What I have come to realize is that it is more than frustration – it is fear.

Fear is apparent whenever I leave the apartment, even if it is only for a few minutes. She is afraid to be alone. She is afraid that something will happen and I won’t come back and she will be alone and there will be no one to help her. As much as I try to reassure her and as often as my brothers call, she is often scared. I am increasingly helpless to reassure her and to make the fear go away.

More and more, she lives in fear of being alone, of being abandoned or forgotten, and of losing those most personal parts of herself. She is holding on to her strongest lifeline – me – with something just short of a death grip. She is holding on as tight as she can to the memories she has and to those that she is reinventing. To be overly dramatic: she is holding on for dear life, lest she lose herself.

This is in some ways an exceedingly hyperbolic expression and yet it has become our routine experience. That fluctuation between “state of panic” and dealing with the minutia of daily life is stressful for us both. And it’s a challenge to maintain perspective when we seem to be living in the extremes. I’m reminded of The Layers by Stanley Kunitz – “live in the layers, not on the litter” – to focus on what it important and not the flotsam and jetsam of life. But her world is very small now, so what may seem like “the litter” to me is important to her and what is important to me is often beyond her comprehension. It’s lonely for both of us.

So, what is important here? Forgiving a person’s failings, forgetfulness and mistakes and understanding their weaknesses. Honoring a lifetime of trying to be a good person, to provide for a family, to bring joy to others, to create beautiful things, and so on. Remembering that they are doing the best they can. Focusing on the good things that represent a life and a soul … hers and mine, for that matter … dignity and respect and love and hope.

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