by Sue Collins, RN co-author of OK Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing, 2014, available on Amazon)
This article was first published in AARP- KC News, October 15.2015
Bit by Bit
It is one thing to watch my 88-year-old father-in-law become forgetful, confused, and to loose his appetite and his ability to walk without help. But I struggle as I watch my high school friend, next-door neighbor and nearly-sister, who is not even old enough for Medicare, slip away in bits and pieces.
The beginning was subtle, unnoticed by most. I kept asking our friends: ‘Don’t you think she’s different?’ They all said NO! Was this really what they believed or denial? I don’t know. Her sister and I noticed, though. It had looked the same way when we watched their mother slide into dementia.
The early inconsistency of this disease plays a cruel trick. Sometimes the person is ‘on,’ and other times there’s an odd disconnect. When my friend is on and not demonstrating any sign of forgetfulness or confusion you are fooled into thinking all is well. Then, without warning, she looks to her husband for simple answers to a question like, ‘How was your trip to the Grand Canyon?’
The next big change I noticed was her uncertainty over her own depth perception. Even stepping over a threshold gave her pause. Once at a party she clung to my arm as we climbed down the steps of a deck. Her anxiety trumped the hint of embarrassment that trickled through. Another time she was confused about how to get into the bathroom at a friend’s house. She kept pushing on the light switch outside the bathroom door and declared ‘the door won’t open.’ I watched for a second, and hesitated. How much of this does she realize? Who am I to try to correct her in front of others, perhaps embarrass her or cause her to fret? Then I opened the door, turned on the light, pointed out the toilet and hoped she did not ask me to come in with her. I was NOT ready for that, even though we had skinny dipped in lakes and camped together many times in our youth. But more than that, I am not ready for this kind of decline, which seems more marked every time I see her.
Our first real jobs, outside of babysitting, were together at the White Coffee Pot Junior in Baltimore. We worked the counter. We gave private nicknames to the regulars and enjoyed watching them interact with each other. One elderly couple always took fifteen minutes to park the car — no exaggeration; we timed it many times. We thought it was hilarious. Once they were inside, the wife would lay out napkins across the table as her husband sat down. Then she (never he) ordered the food, the same exact meal every time. She had to make two trips to the table to carry all the food, so we always brought it to them when we were there. We carried our shared fascination with people through nursing school together. We would go to the mall to shop, but we also loved to sit on a bench and people-watch or as she would say, ‘dissect their characters.’
I believe this exercise taught us much about people, their reactions and interplay. It certainly helped us become intuitive and perceptive in our nursing careers.
Is my friend’s dementia is the result of the statins she took for years? The head-on collision she was in 32 years ago that left a fine head tremor that has increased in recent years? The years of exposure to hazardous drugs she prepared as a nurse for cancer patients? Is it genetic? Or maybe some combination of them all? We will never know for sure. What I do know for sure: watching my sister-friend disappear is frightening, not because as a nurse I know the outcome and not because every visit smacks me in the face with my own mortality, but because I am losing her, who she really is. With most other diseases the person remains present — sick, maybe even extremely ill — but mentally present. The friend I’ve known all my life is disappearing before my eyes. It’s painful.
Now when we’re together, I keep the conversation in our past because then my old familiar friend comes out. When her face lights up, I feel safe and at peace. She even remembers details I can’t recall. Scary. Reminiscing about high school, boys, double dating, nursing school, getting married are all safe subjects, and we have lots and lots of stories that make us laugh — and laugh hard — together. But when I ask about her daughters or grandchildren, I see how it immediately sets her off balance. She will tell me she does not see them often, which feels like a cover-up for not knowing the answer.
So for now, she and I live in the past when we’re together, and we are content to be there. On the occasions she brings up something current, I listen and let her direct the conversation. Recently she asked: ‘Who are those women?’ regarding two long-time friends. One day she will not recognize me either. Her mother, who used to perch on the corner of the couch smoking a cigarette and drill us with 20 questions, had absolutely no idea who I was toward the end. What am I afraid of? That one day my beloved friend will be gone and all that will be left is her body.
Sue Collins has been a nurse for forty years and a hospice nurse twenty nine years. She co-authored a book with Nancy Taylor Robson, Ok Now What? A Caregiver’s Guide to What Matters. Visit her at oknowwhat.net