Tag: dementia

Daily Word

Published on by Kay Shapiro1 Comment

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Sometime after Mom and I moved into our duplex in Kerrville, I got up on a Sunday morning and took myself to church. Mother hadn’t been a regular church-goer since well before I was born, and wasn’t interested in going then, either. Ellen, my friend from work, and I met that Sunday morning at Unity Church of the Hill Country. I never actually joined the church and only attended a few times, but I did pick up a copy of Unity’s monthly devotional magazine, Daily Word. I subscribed a short time later, and now have gift subscriptions going to my daughter, a good friend, and soon to my son and his wife. (Surprise, Josh and Sarah!)

I decided to go through my desk this weekend to try to clear out clutter, etc., and thought that my 7+ year stash of Daily Word could finally go to the library donation store. But first, I would go through and make a list of the daily affirmations that still resonated. I’m up to November 2010, and have 18 pages so far. Double-spaced, but still. Even time-travelling back to where I’ve been, almost every devotional and affirmation speaks to me.

The May 2009 issue is how this clearing-out became a blog post. Esther Koch‘s short essay, Creating Moments of Joy, talks about her gratitude in caring for her mother for the last 10 years of her mother’s life. One passage jumped out at me:

Although cognitive ability might decline with age, one’s capacity to feel does not. Even severe dementia is interspersed with moments of clarity. Knowing this, I never felt I could say “I love you” too often to Mother. My favorite response from her was “I know you do.” She always said it with full clarity and emotion.

And that’s where we are. Mom sometimes forgets the names of things or how to say exactly what she’s needing help with. And sometime we argue about socks. But she knows that I love her and that she loves me.

A Little Light Reading

Published on by Kay ShapiroLeave a comment

Ever since Mom’s heart attack last spring, I’ve been reading more books on caregiving, dementia, and death and dying. The montage above shows what I’ve read on this topic over the past 10 months. I feel like since it’s my responsibility to keep her as happy and healthy as possible and make sure she has the best life available to her at present (the always, ever present – now…and now…and now), I have to also be sure that I can recognize when it becomes time for more difficult choices.

Final Gifts was very interesting. It was written by people experienced in hospice care and talks about the ways a person might try to let the family know that death is near, sometimes in coded statements that the family may not understand until after the fact. One example was with a parent who had been an avid traveler before being stricken with cancer. In what turned out to be his last few days, he spoke of needing to be sure his bags were packed. Family members thought he was delirious, but the hospice worker pointed out that he might be trying to let them know that he was getting ready for his last big journey. Not that the dying mean to talk in code, just that they sometimes do. As far as I can tell, Mom is not currently trying to give me coded messages.

When A Family Member Has Dementia: Steps to Becoming a Resilient Caregiver was probably the most helpful. Rather than recommendations for hands-on helping techniques (which I’ve kinda got a handle on after nine years at this), it focuses more on the ways a caregiver can find strength and hope in what often seems a hopeless situation through reframing and conscious, deliberate self-care. Mom has always been a master at reframing, even though I would guess that she’s never heard that word in her life. It’s a very valuable life skill I’m happy she was able to pass down to me early on.

And I just finished Happier Endings: A Meditation on Life and Death. It is a more thoughtful book, with essays addressing a wide range of topics related to death in America.

  • Fear of dying, as our experiences with end-of-life conditions have become more medicalized and often carried far past the point of compassion or utility.
  • How different spiritual traditions address care for a deceased loved one, and how America’s move away from religion and church-going has left many without any of these traditions to cope with their grief and loss.
  • Ways to think about our own lives to help us overcome that fear of death
  • How overcoming these fears can allow us to have a better dying experience, whether one is the person dying or a family member in attendance

Now I think it’s time to break out one of those cozy mysteries I’ve got lying around here somewhere.