We returned Tuesday evening from a short trip to Vancouver Island for our niece’s wedding. The outdoor wedding was lovely if a bit chilly, we really like our new nephew-in-law, and we got to spend quality time with family, including extended family members that we rarely see…all in one of the world’s most beautiful places.
For me the trip was also a bit of a wake up call, starting with my airplane reading on the flight from LA to Seattle – a book called Keeping Love Alive as Memories Fade. Our therapist recommended that we revisit the ideas in a book called The Five Love Languages by Gary Chapman, which has really helped me understand some long-standing dynamics in our relationship, so I was excited to see a book that applies the love languages concept to relationships where one person suffers from cognitive impairment.
I was glad I read Keeping Love Alive, and am sure I will go back and re-read it more than once, but it was also a sobering look at the reality we face if Don’s currently mild cognitive impairment progresses. It contains some beautiful stories about couples facing this challenge, and more than once I had to turn away from Don to hide the tears streaming down my cheeks. I read the entire book in one gulp on the 2 1/2 hour plane trip, and by the time I finished I was both scared and hopeful about what the future might hold. Scared because I had an insight of this future from the perspectives of what the book calls “care partners” (as opposed to care givers), and hopeful because I could see how love persists even in this most difficult and challenging situation.
With all of this fresh in my mind I was given another dose of reality and another perspective when, without them saying a word, it became obvious that family members were seeing more of a decline in Don’s abilities than I have been seeing. Nobody said anything directly, but there were veiled comments to me, and a solicitousness towards Don and towards me that was a new, even from family members that we had spent time with just last Christmas.
I am with Don every day, and I think that in that circumstance you adjust incrementally to incremental changes and don’t have a good sense of the cumulative effect where someone who only sees a person once in a while can see the changes much more clearly. I had a similar experience when we visited our family in New Jersey in June and our niece commented on how much I now do for Don – which is true, but something that has happened gradually and over a long period of time with the result that I have not really been aware of how much of the burden of managing our daily lives I have come to shoulder. From this perspective, I think the “decline” our family sees when they are with Don only once or twice a year is accurate because they have a different benchmark than I do.
At the same time, because I am with Don every day I think I also see more of what he is still capable of – things that people who only see him once or twice a year do not see – and it is a lot. He is still a capable driver, participates in and enjoys his exercise classes at the gym, socializes with our friends, does all of the daily housecleaning and most of the laundry, cleans up after our meals, gets dinner started many evenings, participates in social media, programs the DVR to record his hockey games, remembers to take his medications….pretty much everything that goes into normal living.
I also think that he is “better” at home with our daily routines and familiar surroundings, and without the stress and drama that being with family brings…especially family that is as loud, opinionated, and intense as mine can be. Even people with no cognitive or other issues who didn’t grow up in that environment get that “deer in the headlights” look when our family gets going, and Don’s hearing impairment doesn’t help the situation.
The end of our trip was marked by the Route 91 mass shooting. One of my key staff members was at the concert and narrowly escaped with her life, bringing this tragedy very close to home. She is safe, but the whole situation reminded me that to a large extent life is a crap shoot. It’s hard to feel sorry for yourself because your partner is demonstrating the frailty of aging when you see so many beautiful lives cut short, and so many people wounded both physically and emotionally, by a random act of violence.
The reality of Don’s condition is probably somewhere between what our family seemed to see and what I experience every day – it doesn’t really matter. What matters is that we are both still here, still loving each other even after 30 years of marriage, and still able to enjoy doing many things together.
It’s all a matter of perspective.