Over the last couple of years, I have come to know the sadness of seeing my mother slowly losing her will to live. Before this, I had no understanding of the reality of what it means to care for someone who truly has no hopes or dreams and is only waiting for it all to end.
Some Things Can’t be Hidden
It is too often that I see my mother looking downward with a hand covering her eyes in that way that lets me know she’s hiding tears. She will try her best to hide these feelings even when she doesn’t know I can see her, probably has to do with being from the Silent Generation. I know that she dislikes for anyone to see her crying, so I try to let her compose herself a bit before I check to see if she’s willing to talk about what’s bothering her.
Most commonly centered on her loss of independence, the particular catalyst varies for each of these episodes. When I can get her to share, one of the recurrent themes is her expressing that all she really wants is to go to sleep and not wake up. Often, she will tell me, “Life’s just not worth living anymore.” She’ll say that all she’s really doing is passing time until she dies – and it’s gotten to the point that the only ways she’s able to “pass time” is watching TV, playing Mahjong on her tablet, or sitting on the front porch and watching cars drive by.
Creating Happy Moments
Don’t get me wrong, we do manage to find activities for her that she enjoys. Two or three times each week, I take her to the local St. Vincent de Paul store. We have a standard route that she likes to take – first we head to the back of the store to browse the furniture section for any nice pieces of wicker furniture for her porch, then we’re off to the dish room where she searches through the silk flowers to find any unclaimed treasures. The optional stop is the chair near the middle of the store where she will sometimes sit for a few minutes when she’s feeling short of breath. Not so long ago, we’d follow this up with a visit to the Goodwill store down the street, but it’s pretty rare these days that she’s feeling good enough for a second stop.
She also has what our family calls “Auntie’s Day” that happens most Thursdays. After enough rounds of mother not being able to attend due to her health, the venue has now been moved to our house, so mom gets to enjoy the company of her sisters and nieces each week. I am so thankful for my cousin Sheri who organizes this event every week. It is something that mom always looks forward to.
But I deeply understand that these diversions are really only short respites from what has essentially become my mother’s own “prison without bars”.
Being a Good Listener
Each day with my mother includes much of the same, and occasionally, something new. This is how it is with someone who has dementia that is becoming more pronounced all the time. One of my mother’s simple pleasures is telling stories – all drawn from the same selection of a few dozen favorites interspersed with the less common stories and the trigger stories. Trigger stories are what I call the ones that almost always pop up from certain stimuli. For example, every time we pass by the location of a long-closed store where she worked for a time many years ago, she will tell one or two of the four stories of her time there that still live in her memory.
When I first moved in as a caregiver, I would too often lose my patience and interrupt her to let her know I knew the story. After I’d been here a couple of months, I’d push this even further by saying she’d told me the story about a hundred times or just by saying the next line to her story. Looking back, I really wasn’t very good at listening – but I’m getting better.
I’ve finally grown enough to understand that my time with her isn’t about me, it’s about her. I focus now on the joy I can see in her face when she tells stories that hold meaning for her and validate her life. When starting a familiar story, she often asks, “Have I already told you about this?” I’ve learned to say things like, “I don’t think so…” or, “Maybe, I don’t remember.” This always brings a smile and a story.
What else can I do?
My power here is limited, I know that.
I can’t change her physical health or how she feels about her life.
But there is something I can do. I can bring her happy moments. I can help her feel safe and loved and well cared for, I can cook meals that she enjoys. I can say things I know will make her laugh. I can ask her questions that give her an opportunity to tell a story or two – and I can respond with interest. I can help her to feel validated and important, and to find meaning in her life each day.
I understand that I need to reconcile myself with this reality, to recognize that I am making a positive impact for her each day. And I need to accept that this is enough, because the truth is that it really is all I can do for her.
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