I remember a few years ago a couple of friends of mine infuriated me with stories of the loving and wonderful time they were having caring for their aging parent. They were far along in the process and I was just beginning it. Why should this have infuriated me? You would think that I would want to wave a magic wand and be having a “loving and wonderful time,” right? There was nothing loving and wonderful about the time I was actually having. Mom was leaving three to six angry blaming voicemails a day on work, cell and landline (remember landlines?).
Later, I remember another friend, who is the full time primary caretaker for her angry mother with dementia, saying “everybody’s always talking about the importance of self care when you’re caring for an aging parent. Who the fuck has time for self care? How would that even happen?”
Down the road aways, I find both perspectives equally relatable and mystifying. My brothers and I recently moved our 85 year old mother with advancing dementia from her (our) home of 53 years to a little house in northern California near all three of us (and all six of her grandchildren).
This frugal public schoolteacher did us the immense favor of saving enough to pay people besides us to provide the care and to keep her in a private home, rather than institution. I am extremely grateful to be one of the few only daughters on the planet who can rely upon her two brothers to be equal partners in this endeavor. Even so, the business of arranging, supervising and filling gaps in care along with managing her affairs is quite challenging. At least once a week I have been the primary caretaker for an overnight or two. I have found even the best of these nights to be exhausting and stressful and I get relieved by others.
To get through even my version of elder care, I have to attend therapy every week, meditation, prayer, support groups and exercise pretty much every day, and work very hard not to use food, shopping, Netflix or controlling other people to manage my feelings. I find I am crying a real lot.
All of it helps but none of it has yet transformed the experience into “loving and wonderful.” I am often angry at my mom for being the way she is. The night before last she woke up a whole household furious and terrified that a woman was being threatened with murder. She was sure this was true and that we were not doing anything about it. This is my fault for turning her on to Jane The Virgin. Sigh. To be sure, I started out very compassionate for how scared she was. But compassion wanes at 3am when someone has been screaming at you since midnight that you are a co-conspirator to murder.
I cannot imagine what it would be like inside my head if I had to do that day in and day out without a care regimen. It’s heartbreaking to think of all the people who do.
Even in all this there actually have been many loving and wonderful moments. I have had great lunches with mom. I have enjoyed having her fall asleep on my lap. I have often felt humbled at the opportunity to help her with this phase of her life. I didn’t exactly expect that to happen but it has.
I think the thing I wish that everyone would do is just admit that this is incredibly difficult. Its a marathon not a sprint. So let’s train for it.