Near the end of my mother’s life, which is to say in the last six months or so, I was feeling so exhausted I didn’t know how much longer I could continue digging down to find the energy to keep on with my caregiving. There was a heavy emotional component to this. Though I had warned over five months that Mom was having trouble with her mobility and needed to be assessed for a walker, I had to watch the impact of her two falls. I had to watch her lose her ability to walk and suffer the indignities of what was not always a positive approach to care, typically at the hands of those filling in temporarily through the nightmare of under-staffing during Covid. It was not easy for me. It was less easy for my mother who needed reassurance and compassion. So many of the staff loved her, but when staffing is short, when there is no one to cover, an environment for a loved one with dementia begins to deteriorate. I could not abandon my mother to this environment. I had to shift again to a different routine, make the hour round trip drive three to four times a week, and now on late afternoons because she was also becoming more exhausted, and was going to bed earlier. Dementia is a demanding condition for the one who has it, and those who are giving care or partnering in that care. I didn’t want to lose my mother, but in those last months, there were days I wished it was over.
I have often talked about this in the support group I help to co-facilitate. That last winter of my mother’s life I knew a new corner had been turned and that we were now in the down-slide toward her final transition. What I didn’t know, of course, was how long it would take. It was very stressful in the way that dementia is. I never knew what the next change or emergency would be, but I had learned well over time that it would certainly come, even if I could never guess what shape it would take. This situation left me in a state of constant heightened alert. I came to fear my phone ringing. I was always relieved when it was not the facility calling.
I learned to erase everything from my mind. I focused on tasks and lists. What was this day? What would happen? Did I need groceries, what about walking the dog? Did I have to work and not could I manage a drive to see Mom but could I manage to eat dinner first or would I have to wait until I got home? Dinners would now be had later during the work week. There were many sandwiches, especially over summer. I kept them as healthy as possible, but there was little time during work days to cook. Cooking happened usually on weekends, and I’d make large pots of things during winter months so that I wouldn’t have to cook on those nights I’d visit. Dark drives were lightened by glistening snow and beautiful moonrises, and sometimes a misty fog ascending from swampy areas near frozen lakes dotted with silhouettes of fishing houses. Rides home over two winters and three summers were times of decompression often graced with the ethereal beauty of the Natural world.
Somewhere in this time of my mother’s last months, when I would lift my exhaustion and haul it out of the bed with me and walk the hallway to start the coffee and feed the dog, I started singing to myself, Put one foot in front of the other…. It was my new mantra, taken from the Rudolph program, the 1964 stop motion one, featuring Burl Ives. Herme the Elf wants to be a dentist and decides to follow his bliss. He quits making toys in Santa’s shop and sings, “Put one foot in front of the other and soon you'll be walking ‘cross the floor. Put one foot in front of the other and soon you'll be walking out the door….” This bit of song stayed with me until my mother died. It was a metaphor of sorts, reminding me that all I needed to focus on was the thing at hand, the day in front of me, the hour, the moment right now. Adding care for my mother was a voluntary commitment I engaged in out of compassion and love for her. It wasn’t a question as to whether or not I would do it. Near the end, however, it seemed a question as to whether or not I could endure it without collapsing.
Such is the story for many a caregiver. How to balance one’s life, one’s own needs and self-care, with that of a loved one journeying through dementia. It is not an easy thing and there is no right answer for anyone going through it as a caregiver. If it helps to think of life in the immediate, then Herme’s song reminds that putting one foot in front of the other is often the best we can do.
Remind yourself that you are doing your best. Push when you can, pull back when you have to. You know what is best for yourself and your loved one, though these two things do often conflict, and more so when your loved one reaches end stage. I never collapsed, except in a chair after a long week or another emergency. That is a good thing. Conversely, it has taken me a couple years to fully recover from the toll the experience exacted on me—on my spirit, on my memory, on my sense of well-being, and on my life as it was before dementia. In time, I would learn to recreate and would reenter my life as it had been. But there is a difference now. There is that line I live on the other side of. The line that distinguishes my life as it was before dementia and as it is now, after dementia. The dementia journey changes everything for those who choose to follow it with their loved one. I can never return to who I was before my mother’s dementia. But I am closer to my own living, and my own remaining time, having traveled her journey with her.
During this holiday season, when expectations can be especially heavy, share a cup of tea with your loved one, or yourself alone, knowing the fluidity of all things and beings is that they change and transform. This journey will not go on forever. Guard your energy and spend it as best you can. Take some part of each day for yourself to be quiet, even if it’s only for a moment, to remind yourself you are engaged in something that is quite out of the ordinary and you have brought it into your life, made room for it, because you care and are manifesting that care through your actions. That is no small order.