It has been four (4) months since my mother, Ethel, died. She left this world on October 13, 2005, but she left her family long before that.
She left us very slowly, very gradually, literally inching further and further away until she finally retreated into a little corner of her own mind, her own universe, where we could no longer connect with her.
And then I did something I never thought I could ever find myself doing: I wished that she would die.
Every time I visited her, I drove away wishing that it would be the last visit. And then I would feel guilty for wishing that, even though I knew that my mother was living out her worst nightmare on a daily basis and I could not help her escape it.
So then I would reaffirm my wish that she would die as I drove home, where I would inevitably tell myself that I just needed a few minutes to regroup as I strode toward my bedroom (which used to be my parents’ bedroom and then, after my father’s death, her bedroom) . . . only to wake up 2 -3 hours later with the realization that my visit with her had once again worn me out to the point that I had to come home and collapse. My kids and husband got used to leaving me alone because they knew that “Mom just got back from visiting Nana” and needed to be left alone.
So when she finally died, I didn’t have a lot of tears to shed and still don’t. And that made me feel guilty, too. And still does.
A long, slow death from Alzheimer’s or dementia has to be among the cruelest for the patient’s family members. That’s why Ronald Reagan, in his letter announcing his diagnosis, wrote about his beloved Nancy, acknowledging what lay ahead for her.
The patient doesn’t really suffer. My mother was not suffering because she lost the mental capacity to appreciate her circumstances. She was lost in a “galaxy far, far away” where she and her brothers were walking to Sunday School across the prairie in a South Dakota that was mired deep in the Great Depression. Once, when my sister and I arrived to visit, she told us that her mother, who died on April 29, 1971, had just been in to visit her. And for quite awhile there, she talked about our father, Kenny, as though he were young and right there with her. She’d tell us that he had just left and would be back soon. My sister and I would just look at each other and say, “Don’t we wish?”
She talked incessantly, but we could not piece the words together into coherent form and, even if we tried, by the time we responded to her she had moved on to another jumbled thought, and could not carry on a conversation at all.
For a long time, after she could no longer recognize us and say our names without prompting, she would get very excited when we told her who we were. She’d look at me with a brief flash of recognition, saying, “Are you Janie?” I’d remind her that I was her daughter. By then she had no recollection at all of the four (4) grandsons she adored more than life itself, nor did she remember their fathers.
It is hard to become too distraught about the death of a person who has spent nearly 89 years on this planet, after all. It isn’t the same as when a young child dies tragically or a middle-aged person is diagnosed with a terrible form of cancer and dies quickly, leaving behind children and a spouse. After all, this is the way the cycle is supposed to work, right? We are supposed to bury our parents and, in turn, our children are supposed to care for us in our final days, and so on and so on . . .
So I guess I just shouldn’t have been surprised to find that, when she died peacefully after hearing the scriptures and words of comfort, I really didn’t have a lot of mourning to do — and still don’t. Because, after all, she lived a long, purposeful, meaningful life doing a lot of things that brought joy to her and her family. We had her with us — and in excellent physical and mental health — for a lot more years than many people have their parents with them. I am so happy that she is released from the steady debilitation that punctuated her last couple of years. And I don’t lose any sleep at night wondering where she is now. She has been reunited with our father and the rest of her family in that place Lutherans refer to as “the Church Triumphant.” I’ll see them again.
Because, in truth, we all mourned her leaving a little bit at a time, slowly and gradually. As she left us, we grieved inch by inch. It has been a very different experience than losing my father, who was sick for many years, but had long periods of good health between bouts. And he never looked or acted his age, never became senile at all, remaining perfectly lucid until the very moment he died as I stood at his bedside talking to and reassuring him.
By October 13, 2005, the day her shrunken little body finally surrendered and followed her mind into that other dimension, there just wasn’t much mourning left to do. And that’s why I’ve felt so disconnected and guilty about it . . . wondering when my mother’s death is going to “hit” me and I’m going to feel really awful and go through those 5 stages of grief that Elizabeth Kubler-Ross educated us all about.
What I’ve realized is that I’m not going to. The reality is that I already did, but I did so at such a slow pace, so gradually, that I didn’t even realize I was doing it. I just put one foot in front of the other, dealing with the situation as best I could.
I’m not going to have a big emotional catharsis. This is it. This is how it works. And perhaps maybe that’s the last punch in the gut that Alzheimer’s gives family members: Not only does it rob you of your loved one, slowly but surely, it robs you of the chance to grieve in what we’ve come to believe is a normal, healthy manner. Instead, you experience both the loss of your loved one and your grief about that in slow motion.