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I have a hard time letting go of perfection. The last 3+ years have been a difficult journey learning to care for J, knowing what she likes, and understanding what works for us. We have our routine, as imperfect and irregular as it might be. There is a general plan for the day, and specific approaches to everything from medication administration, personal hygiene, and meal preparation to therapy/mobility. Given my technology background, I occasionally consider writing a user manual for the “care and feeding” of J, but no one reads manuals anymore.

Practice Makes Perfect

One of the toughest challenges we both face is feeling comfortable with other people taking over J’s care, even for short periods of time. For J, the issues are clear in that she needs to deal with feelings of embarrassment, confidence, and having to do things differently, all complicated by her limited communication ability. For me, I have to overcome my constant concern for J’s safety (even when I bring in a professional), but most difficult is not being able to easily impart all of the things that we’ve learned to do and perfected over time. Note, I use the term “perfection” loosely — nothing we do is perfect in a technical sense but it’s comfortable and works for us (most of the time). What makes me use the term “perfection” is the satisfaction I feel when we learn to do something safely, efficiently, and comfortably. Thus, our approach makes other approaches feel less perfect.

The problem is that there isn’t one right answer for anything. Even when J was a patient at a large respected rehab hospital, different therapists had different approaches. Often this is due to the physical characteristics of the therapist. A 100 lb female therapist can’t use exactly the same techniques to assist a 250 lb male patient as a male therapist of equal stature. I was regularly frustrated and confused by this reality but, had someone given me a hint, I could have learned a valuable lesson.

Thankfully, I don’t need to use outside help all that often. My sister provides support regularly and is most familiar with J’s user manual, and occasionally J’s friends step in. When we were using professional aides early on in J’s recovery, the good news was that we weren’t set in our ways, and we were both open to learning new tips and techniques. The bad news was that the aides typically were inflexible, and each would insist on doing things the way they normally did. It wasn’t that they were obstinate or uncooperative, more so that having to support multiple clients necessitated that they stick to what they know. I could see then that one solution would be to have full-time live-in help where we could develop a consistent approach to J’s care. but sadly that solution was (and still is) unaffordable.

Variety is the Spice of Life

I used to joke that everything I knew about raising a child came from raising and training dogs. There are many similarities if you stop and think about it. Thankfully, I now feel that I have enough child-rearing experience in my own right that I’ve moved beyond dog training techniques. Besides, treat training my child would likely end up with me in jail. Now, instead, I see the similarities between raising puppies and caring for my spouse. One similarity is with respect to socialization.

A completely different approach to caring for J would be for both of us to be much more varied in our approaches to tasks and routines. Just as you should take a puppy everywhere to introduce it to new dogs and people so that it learns to be comfortable in all types of situations, we could have approached J’s care the same way. We could have used multiple resources, learned various techniques, and stayed open to different approaches (as long as they were safe and effective) so that we didn’t feel stuck in the same exact routine. I wonder if that would have sufficiently reduced our anxiety about outside help and my angst about perfection.

Humans are Creatures of Habit

Have you noticed that as you age you become set in your ways? Are there times where you’d rather do something you’re comfortable with instead of experiencing something new and potentially exciting? Research suggests that openness declines slowly past age 30. This doesn’t mean that we can’t change, just that we become more resistant to it. In our case, many changes go unnoticed as we regularly adjust to how either J or I are feeling. When my arthritic toe acts up, I change how I do transfers from the bed to the wheelchair or from the wheelchair to the shower seat. Changes happen more frequently than either of us realize, and maybe the secret is for us to be more cognizant of and to embrace those changes.

The point of this discussion is that eventually, we will need to increase our reliance on third party help — it’s just the nature of me getting older and seeking more respite. If we are to minimize the disruption of that transition, then we need to be open to new approaches to dealing with J’s care. According to Psychology Today; “Perfectionism is a trait that makes life an endless report card on accomplishments or looks.” The desire to find the perfect way to do things is another example of the balancing act and complicated nature of caregiving — in past posts, I explored trying to balance allowing J to do more on her own versus providing more assistance.

A Problem For All Caregivers

At this week’s National Caregiver Conference, I watched the film “The Weight of Honor“, an excellent documentary exploring the stories of several family caregivers for disabled veterans returning from the Afghanistan and Iraq wars. The movie helped me see that even as our individual circumstances as caregivers can be vastly different, the fundamental challenges we face as very much the same. So, while I don’t expect any of you to internalize the specifics of J’s care, I do hope you are able to find your own connection to our challenges. The caregiver community as a whole would benefit from greater emphasis on those commonalities, allowing us to better connect and empathize with each other, and potentially develop some common approaches to these problems. If only someone had said to me 3+ years ago; “stay open to various techniques”, how different would life be today?

What are your experiences with routines and perfection? I’d love to hear your stories! And I expect to tell you more about The Weight of Honor film soon in a post about November as National Caregivers Month. I’m hoping it may be showing near you.

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