CareGiver? Try Care Partner.
Sixty-three years ago this month, my mom and dad were married in a big time wedding in New York City. They made my grandfather, the farmer, wear a tuxedo to walk my mother down the aisle. They rented a Harlem nightclub, Small’s Paradise, for the reception. Everybody was there and it was a day to remember!
My dad was a low-key kind of guy. He rarely yelled (except for the night we were in the car and some white guy called him a Nigger and he jumped out and threw the guy over the hood of our car, but that’s another story for another day), was calm most of the time and a terrific husband and father. And on every holiday he bought my mother a box of Russell Stover chocolates.
If you have read this blog before, you may remember that my mom had diabetes. To add insult to injury, she didn’t really care for chocolate. But she would always chuckle, say thank you, and graciously offer him a chocolate. He would take the box and no one would see it again until it reappeared with 5 or 6 pieces left in the box. Each one would have its bottom punched in to reveal a filling that my father did not like. We kids fought each other for the leftovers.
You might think that my father was not quite up to snuff when it came to gift giving. Or that my mother was a shrinking violet and would put up with tacky gifts. Nothing could be further from the truth. My father’s gift to my mom, day in and day out, was to serve as her care partner.
When dad first started dating mom, one of his buddies said: “You need to leave her alone–she ain’t nothing but a hospital bill.” Despite that warning, my dad courted and married my mother. And her health was poor. And she was hospitalized frequently, particularly after developing Type 2 diabetes. But they had a happy life, three kids and I know he was glad that he married her, despite spending a large part of their time together helping to manage her condition.
Most caregivers don’t get that kind of notice. They marry a person, or have a child, or move away from their parents thinking that their life is their own or that life will go ‘as planned’. It rarely does. Its even more challenging with chronic diseases such as diabetes. At first, its almost like nothing is wrong, since your loved one is not paying attention (or ignoring) the symptoms. Increased thirst. Frequent urination. Unexplained Weight loss. Fatigue. Blurred vision. Finally, there is a diagnosis. In response, the PWD (person with diabetes) may or may not change their behavior.
There is no blaming-shaming here–it never helps anyway. PWD’s can live their lives the way they want. But sometimes the results impact other people, those that love them. Sometimes we see the potential outcome of eating poorly, avoiding exercise and not taking medicine. Sometimes those we care about do all the right things and still have the dreaded outcomes, poor health and deteriorating quality of life. The easy response is to become the diabetes police. To raise our eyebrow, to scold, to remind, to lecture the PWD about what they should or should not be doing with their appetites and their bodies. Of course they ignore us. Wouldn’t you?
That’s why I always admired my father’s decision to be a partner in supporting my mother in how she wanted (or didn’t want to) manage her diabetes. My mom was one tough cookie and nobody was going to tell her what to do. My dad was smart enough to realize that, but cared enough to facilitate the most healthy environment for her. He made sure that her insulin and syringes were always in the house, and that she had the car when she needed to go to the doctor. It was okay if she wanted to take care of herself and he could keep his mouth shut when she didn’t.
Unfortunately, he had to do it all over again, with my sister, who had Type 1 diabetes. She made all decisions about her life and healthcare. Mostly bad decisions. But my dad supported her in her decisions and she lived the life that she wanted. When there were consequences, she suffered them. When there were successes, she celebrated them.
I know, I know. You are thinking “Yeah, but when they (PWI) don’t take care of themselves, I’m the one that’s going to be stuck taking care of them.” That’s a good point, except everyone has choices to make–including you. You can choose to be a taskmaster or a nag or you can choose to be a partner to your PWI. Even the youngest child is able to make some decisions about how to manage their disease. When we fight diabetes with a partner, it can be a powerful combination.
My parents were partners for 30 years, until my mother died from complications of diabetes. When I celebrate the 63rd anniversary of their marriage this week, it will be with great joy and appreciation for them, and their ability to show us what “for better, for worse; for richer, for poorer, in sickness and in health” really means..