Someday it may happen. You notice that your mother no longer finishes the books she is reading, and she repeats the same story within a ten-minute period. She also has trouble following a movie you are all watching. Or your father leaves little pieces of paper all over the house with words scribbled on them, and his friends have stopped inviting him to play bridge or poker. All of these are signs that your beloved parent has the beginnings of dementia.
When my mother was diagnosed, major concerns entered my life, concerns about her living situation and how to plan for every eventuality. But as her dementia increased and she was living in a senior home, yes, some of my concerns were settled. However, then new ones took over. I began to realize that through no fault of hers, our close personal relationship would change. And I worried and wondered: How would I handle that?
1. Before dementia my mother was my lifeline. She helped me solve problems, advised me when certain situations called for her opinion and loving advice. She was my rock, my guide and always so loving. But little by little she became unable to retain the names of my children, her grandchildren, and then her great-grandchildren. Though she always had a sweet smile for the caregivers at the senior home—I knew she was struggling, that forgetting was hard for her. She never forgot the faces and names of her three children, we being part of the core of her personality. That remained, my brothers and I so fortunate that she rarely became angry as many dementia patients do. Because when your memory is fading, the context is also fading. Maybe it’s like opening your eyes after a nap and things are not the same—things are only confusing. When I was with my mother we could talk about the small increments of life–like what happened in the previous hour of her day or maybe a bit of what happened in mine. But if I got too detailed, she would pull away, suggest that we talk about that at another time. Amazing, that despite her illness, she had the savvy to protect herself.
2. I had to accept from then on that we could never talk about complicated things because her brain could not hold lots of facts at once. She could not support and help me if I had experienced a tense day, because she couldn’t take it all in—that my five hour drive had been delayed by road work, that my husband had been ill, or that my son had lost almost all of his possessions in an apartment fire. But we could always talk about the biggest things in our life together: my father’s early death and that she raised me and my two brothers by herself. That history defined who she was, many details of her amazing accomplishment still clear in her mind.
3. All of this weighed on me as I came closer to losing her. It made me wonder what life really is. When she’s gone, is she gone? I knew my memories of her would be there, but I didn’t know, couldn’t absolutely believe we would connect again. Yes, my religious faith says we will–but there is again no context for that, no tool to use to understand it. You hang out there in the ether hoping for some shred of belief.
4. Mortality is part of who we are. None of us, except maybe those we call saints, deal easily with it. Ironically, I have talked to my deceased father all my life and he is the reason I lean toward belief in something beyond this life. I feel that he has gotten me through lots of tangles–or someone has. It’s intimate, the talk I have with him, and baffling at the same time. Does he hear any of it or am I just creating some healing persona that I can talk to instead of paying a licensed psychologist?
So when your parent is diagnosed, set aside lots of time to be with him or her. If they agree, record some of their personal history. Get their input on how their future should go in spite of the dementia. Because over time you will be facing questions concerning your loved one’s death—and you need some answers now. I was able to face the funeral, burial questions with my mother. She was able to provide answers. But that other question, the one concerning what’s beyond her last breath, and your own? Hold your loved one’s hands as often as possible. Hug them. My mother knew her children up to the moment she went into a coma and then two days later, died. Thus I can say, she knew us to her very last breath. I wish that for you.
Being a member of the hectic sandwich generation, I blog to help slow down the frenetic pace of life.
I published A MOTHER’S TIME CAPSULE, a collection of stories, so that my readers could reflect with me
on the many aspects of motherhood. A registered nurse, health educator and writer,
I am passionate about preventative health measures and women’s health.