Caregiving changed me in ways I don’t yet, completely understand. Not unlike the concept: “memory loss,” I think I spent most of my life taking for granted the freedom I had to be myself. I always fought for that `right’, with determined defensiveness, being clear about who I was and what I wanted in life. To this day, `Dr. Sissy’ will counsel more friends on the imperativeness of being one’s self than on any other single issue!
The problem is this: for the longest time … years … I really didn’t know my ‘self’ anymore. And, even still, I struggle with that now – more than 25 years later.
Close to her departure, even before May 1994, in anticipating GaSara’s imminent death and my inevitable freedom, I made a tremendous hullabaloo, in conversations and in writings, about the importance of reclaiming my life and finding peace in my own home again.
As thinkers and believers, working to keep a balance in an unbalanced environment, we sometimes find our optimism out‑weighing what we know. I think this might explain my eventual keen understanding of the fact that my Caregiving had taken a toll on me and I must take the time to heal. The imbalanced optimism also explains the length that we might go to believe everything is “gonna’ be fine,” without having the strength, energy, or understanding of the graveness of our situations, to make what we understand a reality.
I conned myself a lot, as a Caregiver. And that disturbs me. Now that I am no longer a Caregiver, I still have that tendency. That was not my nature before Caregiving. Truth to myself has always been important to me. The trouble is I spent so many years giving up the things that were important to me, that I had a very difficult time remembering what is important to me. For a long time, after GaSara had crossed over, ‘having my life back’ was not as pleasant as I once thought it would be. There were times of downright confusion, although, thank God, after all these years, it has gotten better.
Every decision I made, in those years with GaSara, was contingent on her needs, not my own. It was her best interests that were most important to me. In the latter years, if I left her with a sitter, the sitter was given explicit written instruction on how to care for her and a list of phone numbers to reach me at any possible destination. If my plans included cocktails, despite an often-held desire to rebel, I would only have a beer or two – max. I could never risk “getting a buzz” as the sitter could call at any time, needing me. To this day, truthfully, wherever I am when the phone rings, I still instinctively look to the answerer, wondering if it’s for me. That’s nuts. I don’t answer my home phone anymore … always screening these days. The phone still bugs me. Despite the numerous calls I must answer, and do, every day, this phobia remains a reality for me in 2017.
I’m a musician. More precisely, I’m a percussionist. Drums have been a vital part of my life for more than 45 years now. My instruments, music collection and stereo equipment are my luxuries, as much as they are necessities for me. However, keenly audible music with pulsating percussion is not at all conducive to the loving care of a dementia patient. So, needless‑to‑say, my drums remained in their cases and my music and stereo stayed at Marjorie’s, (in the rental house she kept across the street) during my Caregiving years. I know the separation hurt me.
It is all too common for those of us in trouble to turn to drugs to mask our problems. For me, drums have always been my favorite drugs of choice. It is really difficult to explain the euphoria I experience when I am playing. Within minutes of sitting on the throne and warming into a tune, I forget about everything else in the world. It’s as if I become one with the drums ‑ really. My arms and legs seem connected, by invisible cables, to the instruments at hand. Michael Jordan called it “being in the zone.” Call me crazy, but when I’m in that zone, it’s often even better than sex. It is the purest form of pleasure and relaxation that I have ever found. Yet, one I inadvertently chose to give up, so I could care for GaSara. It hurt me.
I did, however, turn to other drugs to `reward’ myself and mask my troubles. Of course, I had to choose drugs that would not be a threat to GaSara, so that, consequently, they would only hurt me. Silly, I know now, but true. Food was the obvious drug of choice and, because I bound myself to the house for so long, with no exercise to speak of, television became the accompanying second drug of choice.
From 1989 to 1992, I ballooned from a petite 113-pound young woman to a short 153 pound jaded Caregiver. That was enough to make me want to get drunk! But, of course I couldn’t. So, I just spent a lot of time hating myself. I was so disgusted with myself, and my life that I became almost despondent.
Day in and day out, I did my duty. I effectively performed my ADLs for GaSara to replace the ADLs that she had lost. ADLs are “Activities of Daily Living.” This is the term used by professionals to describe the daily activities, such as bathing, dressing, toileting, etc. that persons with progressive dementia lose the ability to perform for themselves. It is a part of the Caregiver’s directive to perform these tasks for the patient. Ironically, perhaps, the Caregiver often succeeds in her duty to the patient while neglecting her own ADLs. It certainly happened to me.
Although each new day presented its share of surprises, Caregiving for GaSara, in many ways, became a boring and monotomous routine. And, as I became more and more despondent and depressed, I found myself hating to get up in the morning.
I did get up each morning, though, dutifully going to GaSara’s room, bathing her, dressing her, changing her sheets and giving her breakfast. However, the telling facts are that I would go days without a shower and would wear the same clothes. Who was “gonna’” see me? God only knows when I changed my own sheets, and I never ate breakfast. My focus was completely on her. I was so full of self‑loathing that I could not even think of thinking of myself. I was just a big, fat, sorry excuse for a human being. That’s what I thought of myself.
When I did see other people, at the store or the bank, most would usually praise me in some incomprehensible way. Don’t get me wrong. I have no doubt that each of them was sincere.
“I admire you so much for the loving care you’re giving your grandmother,” they would say. Or “You will have a million jewels in your crown when you get to heaven.” or even, “Your strength and courage are an inspiration to many.”
What strength and courage? I would thank each of these wonderful well‑wishers, while thinking to myself, “They have no idea what scum I am!”
They didn’t know that, just the day before, I had yelled at GaSara, “Why do you have to make such a @#$%&*% mess!”
If I’m “so loving,” how could I yell at this completely innocent victim, with such anger? Yes, that was the day I had awakened to find the hall floor, from her bedroom clear to the kitchen, covered with her messy shit, and her Depends® torn to shreds on the kitchen table. It was disgusting. I had only about two hours of sleep before I woke, and I was tired. But, was that any excuse to cuss at her? She didn’t know what she had done. She had forgotten it as soon as it happened. Moreover, by the quantity of her expulsion, she was probably feeling really good! Then I had to give her hell.
No. There was no excuse for berating her. And, I’m not proud to admit that it happened several times. I did learn, however, that there was also no excuse for berating myself either.
As Caregivers, we often forget that we are simply human. Guilt is our most embraced emotion. We get ourselves into this martyr‑like, self‑imposed role that somehow convinces us that we are to love our loved ones completely, perform our Caregiving duties with perfection and do it all without complaint, resentment or error.
As absurd as it sounds, this mind‑set is characteristic of most Caregivers. Consequently, we set ourselves up for failure because we are HUMAN. It is not a conscious decision on our parts, making ourselves answerable as saints. Most of us, myself included, will flatly deny, in the heat of Caregiving, that we are acting like martyrs.
On the contrary, we will be the first to lie to anyone by insisting that we are strong and we are taking care of ourselves. If we admit otherwise, we are suggesting a weakness. An admission like that, to anyone, might infer the need for someone else to step in and take away a part of our control over our loved one’s caregiving.
We can’t allow that! It is in direct conflict with the martyr’s code: ‘I can do it best, all by myself.’
It’s crazy. But, it is the norm.