I have been supporting parents and caregivers for over a decade now, but this week I have been plunged back into the uncomfortable but all too familiar rodent wheel of carers. In this case, it is temporary, has an identifiable protocol, amazing resources, and everyone involved is rowing in the same direction, and I feel that good fortune deeply.
In this case it is an older relative, and the caregiving is mostly done by competent and professional nurses.
But it is a visceral reminder of what caregiving is. As they say “it ain’t pretty.” Neither will anything I am able to say today be, but I’ll try.
Sleep is the last thing we protect. For caregivers, it is not scheduled or measured or monitored. Going without REM sleep is demonstrably a health risk, but even when attempted the running thoughts of “what have I missed, what hasn’t been done, what needs doing” is not going to turn off when the eyelids are closed: in fact they rise into prominence. There is no real rest, only exhaustion and collapse, for caregivers. And yet without sleep there is only the endless present of worry and anticipatory anxiety: no space for planning, processing, or scheduling rest.
A lot of professionals and other hard-working people go into making a hospital and health system work. We only see a few of them. During crises like this I find myself appreciating all the many people I see behind the scenes, behind the machines, the screens, the trays, the cars coming and going from the staff parking, and the ones and twos arriving at all hours of the night in the dark.
Other loved ones.
We all have needs in the process. From the patient in the middle of the room to the lady getting snapped at when she comes in to take a dinner tray. It may be a hierarchy of needs, but even the least involved needs 100% of their needs met.
It is so easy, even cruel, to say that communication is key. It is, surely, but between professionals in a hurry, and family members with different relationship styles, and a patient in pain, not to mention the moving target of a healthcare crisis: information and communication suffers. Each of our understandings of the big picture differ. My greatest reminder from this experience is that we cannot fix systems and relationships already long in place DURING a crisis. Accepting what IS becomes one of the great challenges.
It’s hard. It’s helpless. It’s not going to be done “right” and none of us are doing it all that well. Everyone’s trying. But it’s inherently imperfect and never ever even a bit like a movie. It isn’t a clear narrative, it isn’t a good guys vs bad guys, it isn’t clean and neat ever. There’s so much acceptance. So much letting it go and being ready to do the next imperfect thing. And forgive ourselves and others.
As I sit by the hospital bed I am reminded of the importance of grandparents. This person surrounded by technology has been the hands and heart of a carer to my children. She has cared about and for me and my kids and my husband and all the many relations. Being a parent is full-on, being a grandparent is embedded in such an important way. I didn’t really have a grandmother on hand. My kids do: they have so many grandparents — due to step-relationships and adoptions added to the mix — that I often have to sit down and write a list carefully not to leave someone out. My children benefit so much from their lives surrounded by grands, and as they support their grandmother I am deeply, deeply moved.