I am one who is comfortable with a lot of solitude. It’s my nature, and it’s the writer’s life. It may also be my age. I did quite a lot of running around before I was a caregiver! Poetry readings, performances, art openings, drum classes, recordings, collaboration, parades, protests, lessons with master drummers—some out of state—and then my own poetry readings in other states, book promotions, website and social media detail. What energy I had! And then I gave it to my mother, with so much love over a five-year period—four years of which were intense, and that intensity increasing each year, with the last year of her life requiring much of me.
Anyone who has gone through this or is going through it, especially if their loved one is at end-stage dementia, knows what I’m talking about. And just when you think you have reached the limit of your energy reserve, you are required to kick it into high gear through crisis after crisis that is so common in end-stage. I know in the last months of my mother’s life I was operating on a lot of adrenaline and cortisol; such was the relentless stress in those final six months. All kinds of things were happening. Mom could no longer swallow food so it had to be pureed and initially she wasn’t getting enough food. She’d had combative periods and was placed on a powerful drug, hydromorphone, that in the beginning was not being properly administered and I found her on several occasions clearly over-medicated. There were issues with her clothing, a new wheelchair, bedding, and more….
At this writing, my mother has been gone for 15 months, but I’m still not running around very much. I’m still catching up. I’m catching up on writing and submissions, and all the many little and big things that needed doing around the house. My mother was in a facility that was an hour away, round trip. Add to this two- and three-hour visits two to four times a week over the course of two and a half years, and well, that was a lot of running, not to mention all the little shopping trips I did for her. Clothing, toiletries, laundry soap…. When it ended I was relieved for about two days. Then came the gaping hole. The terribly emptiness of the loss, and the physical feeling in my body that I HAD TO GO SOMEWHERE. It was so strong, after two weeks, I finally drove the route at my usual time on a Saturday as though I were going to see my mother just to get it out of my system. It helped. I’m sure my body was recovering from the overload of stress hormones that I kept in check but never really at bay. And that is the key. Whatever it is in us, that fight or flight sense of urgency and emergency never fully goes away, and, in my case, I could only do my best to manage it. I did a pretty good job at self-care, but again, that worry, always, every day, slight or great, was there. All the unknowns were present, and the pain of losing my mother to such a condition as dementia could not be underestimated. It really was everything, all at once, and often it was all I could do just to feel rested.
In the last 15 months my recovery has been a steady upswing from reset of stress hormones to sleeping well, and regularly, and feeling so rested I now understand how exhausted, even with enough sleep, I actually was for about the last year of my mother’s journey.
So yes, I go, but I don’t need to run. I have a movie theater 10 blocks from home. Two grocery stores at the end of my block. Another grocery, and a big box store, three blocks away. I am still catching up on indoor projects, the outdoor ones at last completed this summer. I am enjoying my time returning to my life as it was before dementia took control of my mother’s life—and mine as her caregiver. I enjoy greeting neighbors, some of whom are friends I gather with. It’s a time of deep peace, of regathering and restoring, and it has taken many months for me to begin to feel better, to feel I am nearly fully returned to my life as it had been, cyclical, but no longer laden with terrible ups and downs and worries and fears. I have sometimes felt lonely during my transition, but I have mostly luxuriated in it, giving my grief the time it deserves. This new time has shown me how much I gave to my mother, how much caregiving a loved one with dementia requires. It takes so much out of us, even with its many joys and gifts. My small village of friends surrounded me and helped me through. For these dearest friends I am forever grateful.
So, be kind to yourself. If you are caregiving a loved one in, or entering, end-stage, love yourself. It is the hardest part of the journey and occurs when we are already feeling most tired and as though we have so little left to give. So, don’t push yourself when it’s over. Don’t feel “normalcy” has a timeline. Give yourself the same compassion you gave your loved one while knowing that it takes time. It took time for your loved one to die, and it will take time for you to return to whatever “normal” is, now, and that it will include your grief as you adapt to the new reality of life without your loved one
It will get better, in time. Be patient and kind to yourself. The pain of loss will ease. The stress hormones will level off. It will get better. Take a little time to be still and let the rough winds blowing through your heart settle to the softer breeze of loving remembrance. Embrace every aspect of recovery, of healing. There is no right or wrong. There is only awareness as you go forward, in the now.