What caregivers can also lose once they’ve lost their loved one

It’s been two years almost to the day since my mother departed this life, relieved at last of the mind-robbing illness of dementia. As I reflect on those last weeks she was with us in December and January 2020, just before the start of the pandemic, I realize more clearly than ever that dementia could not steal her soul and her deep faith and trust in God. She demonstrated this to me in what seemed like miraculous ways, all during the years I was her full-time caregiver.

What a remarkable and beautiful soul she was and is. Despite everything, I am confident she knew about what was happening to her mentally, but she was nourished spiritually by her faith and belief in God’s promises. I more than sensed, in fact, I knew that her spiritual life was intact. I’ll never forget her last night in her home, in her bedroom, after our minister and the hospice nurses had left, how I felt less apprehensive and fearful about death because I saw her courage, and I sensed what she knew, somehow.

The pain of loss, the grief after losing a loved one, especially if that loved one is your mother, is less acute with the passage of time, but it is always there, particularly when you have devoted years of your life to that loved one’s care and sustenance, every aspect of their life, in fact, because they are helpless to do anything for themselves. I saw Mom very, very gradually become dependent on me, she who was a very independent and intelligent woman. I can’t imagine what it was like for her to apprehend this, and realize that something was very wrong, yet be unable to do anything about, except for one thing — she prayed.

Caregiving became for me a way of life. I found that as the years went by, my job became less urgent and important. Every day at work I was on alert for calls from the home aides who worked for us. Would I have to rush home, or could I let the home aides take care of it? My role and responsibilities as a caregiver were never far from my thoughts.

In a reversal of everything that occurred earlier in life, a primary caregiver can assume the role of a parent-surrogate for his or her mother or father. You are caring for someone you love very much and who brought you into this world. This was never so apparent as during the last couple of weeks when I discovered dozens of old photos of me and my two siblings with my mother in the 1950s. She always looked so happy and proud of us in those photos.

It’s very cold here tonight in coastal South Carolina as old a it gets in winter. But it’s warm and cozy at 3 am, still a couple of hours before bedtime for me. I’ve just come from downstairs, and am in bed writing this while listening to some meditative music. One of the spiral bound notebooks containing Mom’s prayer journal is beside me. These are gratitude journals thanking God for His blessings, as well as prayers of petition and thanksgiving. She wrote these daily for many years. They conclude in 2001 for some reason. I can’t find any later than that, which surprises me. It’s possible that the early stages of dementia were causing cognitive problems which made it difficult to write, however, reading some of the last journal entries she wrote in 2001, make this reason seem unlikely. It’s really a mystery to me because it was evidently so important to her spiritual well-being. I think her notes to friends and Christmas cards were diminishing around this time also.

People used to ask me how I did it, and my short answer was always, “I did it out of love.” What force could be stronger to have given me the near super-human strength and resolve to carry on day after day, month after month, and year after year? Sometimes in exhaustion I told myself I couldn’t do it anymore, but I always found the strength, mentally and physically.

Because caregiving was so all-consuming for me, it always seemed like it would never end. It had become my life’s ultimate calling and blessing, and I received many benefits. I felt truly needed and loved in return. Mom was able to show this in so many ways, right up to the end, despite by this point her advanced dementia.

The first year of the pandemic after Mom was gone passed in a kind of isolated daze as I mostly stayed in to avoid the virus. I had a lot of time to think and write. I dealt with my grief and loss, at least as far as I was able.

Beginning last Spring, when I and so many others were getting vaccinated, I started coning out of my long self-quarantine. Life seemed for awhile to be getting back to somewhere near normal. And then Omicron came this past December. Hopes and plans became unsettled again, and I continued to fixate on a diet of alarming daily headlines.

I can’t imagine the anxiety and stress of caregivers and their loved ones during the worst stages of the pandemic. Mom was spared that. I hope that I would have been able to cope. But now that I feel a bit free to engage with the world, I find that I’m not sure how to do that, or what I should do. I should try to meet people and make new friends at the apartment complex I’m moving to. That’s a good idea. Volunteer? I haven’t done that in ages. I don’t even know what would be a match for me at this stage in life.

For someone like myself who prefers to be by himself, it’s very difficult to get motivated to do anything.

The reason for this is fairly simple, and I feel certain that many other caregivers who have lost a loved one feel similarly. Frankly, when I was a caregiver, I had a sense of purpose, a higher and nobler reason for living. I had never felt that so concretely before. I felt competent and capable. When I was working full time and caregiving, it was like a juggling act, but I managed to stay balanced and focused, performing countless tasks that only another full-time caregiver dealing with a loved one’s Alzheimer’s or dementia can fully relate to.

Instantly, in the early morning hours of January 28, 2020, all of that responsibility was gone, taken off my shoulders. It took me days to even realize this, and weeks for the new reality to set in.

The pandemic afforded me an excuse not to think too much about what I was going to do with my life here on out. I, with no spouse or partner, no children or grandchildren, am pretty much free to do what I want, whereas before when caregiving, I was thankful beyond measure for any every hour to get out of the house or any two-hour getaway to the nearby parks and gardens to taste a little freedom. Now, I have all the freedom I want and don’t know what to do with it except what I’ve been doing all along since Mom’s been gone — staying up late into the night, getting up late, having a long, leisurely breakfast, catching up on my Internet activities, going out shopping, taking walks. Read, write, meditate, concentrate as never before on photography. Listen to streaming college lectures on Great Courses, indulge often in YouTube videos. Email and communicate with friends. I’m never bored, but since that deep sense of purpose in life left
when caregiving ended, I let myself feel guilty. For the first time in a long while I have time to ruminate on past mistakes and failures. I’ve been feeling more lonely and depressed, although these feeling don’t last.

Life seems to move at an accelerated pace now that the years I have left are limited. As the pandemic ends, I’m going to have to think harder about how I spend my days. Isolation imposed from without by a dreadful and fast m-spreading disease can’t continue. Covid can’t rule my life. I’ll continue to be extremely careful. But I have to start really living again, instead of living in this snug cocoon.

My advice to former caregivers is to gratefully acknowledge to yourself all you were able to do for your loved one, and realize that you have much left to live for, even if you have fulfilled your purpose in life.