Nancy Deming-May
December 2015
I’ve truly wondered over these past years about the “whys” of dementia as my mother has descended down this seemingly endless staircase. Why did she have to get this? Why does it make her more thoughtless? Why does she say those hurtful things? Why can’t she at least remember THAT? Why does she hoard stuff? Why didn’t she take better care of herself? Why didn’t she plan better – especially after seeing her parents?
There are also the “whens”. When did this really begin? When were her first mini-strokes? When did she last have her wallet? When should I take her back to this or that doctor? When should I start or stop this or that medicine? When is it okay to decide to stop dragging her from doctor to doctor, and just do enough to keep her comfortable?
Then there are the “whats”. What should, or could, I do differently, so this doesn’t happen to me or my children? What is the best level of care and supervision to keep her safe, yet preserve her independence as much and as long as possible?
As we have maneuvered these endless questions, I’ve had to work hard to find the good in her illness. I’ve read books and articles on dying and/or dementia with intense interest. I was especially fascinated by the article in The Atlantic by Dr. Ezekiel J. Emanuel, “Why I Want to Die at 75.” A quote of his that I find particularly on target is, “But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.”
I’ve vowed I won’t let myself get to this same level (as my mom) with my kids. I’ll stop ANY antibiotic – even for the simple UTIs – so I don’t have to drag my kids through this quagmire of frustration, obligation, and guilt. I’ve wondered about the meaning of it all – the articles that say how much the author grew or learned from their torturous experience of caring for an elderly parent.
With each step down the staircase, I’ve tried to be honest and accepting of myself and my feelings. I’ve bristled at her “joking” comments that hurt – because she doesn’t have the frontal lobe to sense their inappropriateness. I’ve done my best to hold my tongue when she demanded certain things – minute in their instance – huge in their history. I’ve tried to look at the bright side – how things could always be worse. I’ve been grateful for my sister, and cousins, and friends that I can be honest with – especially those who have shared the same experience and understand when I admit that though I am really good at caring for her (getting her to the right doctors, monitoring her meds, keeping track of her finances, protecting her from predators), I no longer enjoy spending time with her. This too, brings me guilt.
Recently, my mother has taken a turn for the worse. After a fall where she suffered an eventual compression fracture in her back, she was wracked with pain and wanted nothing more than to lie on her bed undisturbed. After multiple, tortuous outings to various doctors’ appointments, we finally determined the source of her pain (it took five weeks). We eventually brought in Hospice to help. I found their greatest contribution was giving me permission to stop trying to “fix” everything and to just keep her comfortable. In the meantime, she has lost over 30 pounds, and though her back has healed, her mind has further suffered from the prolonged period of inactivity. So now she is “back” and semi-mobile again – though more frail and with just a shred of memory. I now tell her stories for her, though sadly, she no longer recalls them, even with my prompting.
I wonder how much longer this will continue. It seems to me that we are “lingerers” in my family. We don’t go quickly – we hang on and suffer, or at least endure. This is not how I want to go.
We are back to that Why question again. When I discuss my thoughts about not lingering with my husband, his perspective is that simple things will be enough for us – one more milestone of the kids, grandkids, or great-grandkids will make it worthwhile. We joke about what we will need to keep us content – how we love watching and listening to birds, gardening, straightening things up (OCD people understand). I joke about giving me a flower bush to deadhead or taking me into woods for walks even if I’m in a wheelchair. I get that, but I wonder about the effect of my likely disability and dependence on my children or primary caregivers. His family history has not been one of lingering. They have long independent lives and then slip away quietly and quickly.
As I ponder the “What is enough?” question, my mother continues her decline. Where is the bottom of this dementia descent? Over the past several weeks, her memory has been so vacant that she doesn’t even interrupt our dinner conversations to demand an explanation that she can’t understand. And then, I’ll be walking her back to her room after our meal, and she’ll turn to me and say, “I just love you,” followed by, “I’m so glad you’re my daughter.” To which I am taken aback, and reply, “Aw Mom, you’re going to make me cry, and I love you too.”
I take her back to her room and get her settled, and as I walk back out to my car, I shake my head and feel the gratitude wash over me.
And I vow to tell my children how much I love them.
Maybe this is enough.
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