I’m no stranger to grief. In my 59 years, I’ve buried all of my grandparents, both of my sisters, both of my in-laws, my father, and now my husband. The loss of the sister closest to me in age was particularly hard as she was my best friend and breast cancer took her way too soon. I watched her die over the course of two years and losing her changed my life. For years after her death, I marked every event in time as to whether it happened before or after she died. Her death shifted my world.
Losing my father was difficult too, but he was 79 years-old and for some reason, that made it more bearable. Children are supposed to outlive their parents. It’s the natural way of things. My father used to say, “Nobody gets out of here alive,” and while that comment always brought a chuckle, it was a grim reminder of the truth. Death is just as much a part of life as birth, but for some reason, we’re always shocked when it happens to someone we love. Even when that someone has been diagnosed with a terminal illness like cancer or dementia.
The recent loss of my husband to Lewy Body Dementia brought home the complex issues surrounding the grieving process in a very personal way. My sister fought breast cancer with every ounce of her being, never losing her spirit or her character. To the very end, she was the person she’d always been. Her wit, grit, and personality were intact to the last moment of her life. My knowing she was dying did not change the fact she was jerked away in an instant when her heart thumped its last beat. I felt the loss and grief immediately. It tore at me and smothered me for months and even years.
The loss never hurt less, it just hurt less often.
I assumed I would feel the same way when my husband died, but I was mistaken. After the initial sorrow that washed through me as I felt his heart quiver its last beat beneath my hand, I felt oddly numb. Fifteen minutes of intense sobbing slowed and a surreal sense of relief settled in. Relief? How could I feel relief when the man with whom I’d spent the last 4 decades had died? This was the man who’d shared my life as we raised our children and built our home. He was my best friend, confidant, and companion for almost 40 years. There was no one I loved or respected more than him. He was half of me, so why wasn’t I devastated?
I stood in line at the funeral home while mourners walked past, hugging me and crying, but while I did shed some tears, the utter desolation I expected to feel wasn’t there. I was told how strong I was, but what they didn’t know was that I was numb. Like someone who’d survived a horrific battle, I was detached and flat. There was no sorrow, no joy, no emotions of any kind and this worried me.
What was wrong with me?
After a few weeks, the initial numbness wore off, but even when the tears began to flow, it was still not the same devastation I’d felt with the loss of my sister. For a woman who typically cried during Hallmark commercials, this lack of emotion concerned me. I began to analyze my lack of feelings because being raised by two guidance counselors had instilled in me the need to understand why people do what they do. As a result of my armchair psychoanalysis, I came to a few conclusions.
First, dementia is often referred to as “the longest goodbye” for good reason.
Over the course of years, our loved ones change dramatically. Their personality changes, their abilities change, and little by little they morph into someone else. They still physically resemble the person we knew and loved, but many other changes are extreme. The relationships we had with them also change. Our husband or parent, becomes our child. We must oversee their needs not too unlike the caregiving required to take care of a toddler. That doesn’t mean we don’t still love them, but the type of love evolves as the disease continues.
Most caregivers begin experiencing ambiguous loss during this time (more on that can be found here.) For those caring for a dementia patient, the mourning process will begin years before their actual death. In the six years before my husband’s death, I spent many nights crying myself to sleep with my mornings spent concealing the circles under my eyes so my husband wouldn’t notice them. I could see him disappearing in tiny slices and there was nothing I could do to stop it. The reality of that was soul crushing.
Second, caregiving is hard.
It’s the most difficult thing I have ever done, and I imagine most other caregivers would agree. Before being thrown into a caregiving situation, I’d always assumed the difficult part would be the physical side of taking care of another person. Lifting, bathing, dressing, and feeding another adult would be demanding, but I soon learned the physical component was far from the most difficult aspect. The hardest parts, for me, were the isolation and longing. Once our loved ones can no longer be left alone, our freedom disappears. No more lunch out with friends, no more shopping trips, no more long soaks in the tub, no more anything. And this confinement is twenty-four hours a day, seven days a week…for years.
Eventually, life settles into a monotony of chores and a tight schedule that cannot vary from day to day due to the complexities of dementia. Our loved ones can’t tolerate change so keeping a consistent schedule is imperative. We begin to judge how good a day is by whether our loved one stayed calm, or if we were able to take a shower without interruption. It’s like being in prison when you haven’t committed any crimes. And even after hiring aides or placing our loved one in a facility, our lives do not return to normal. We still have to oversee their care, and keep their interest in the forefront with every decision we make. In my case, my husband spent his last two years in the assisted living component of our retirement community. It was a great arrangement (more info on that came be found here) but I still spent most of the day with him. I was the center of his world. With me he was happy. Without me he was frightened, anxious, and sad, and he watched the door continually until I returned. Consequently, I didn’t leave him often. I don’t regret that, but at times I felt trapped.
Not only did I feel isolated by the disease, I also longed for the life we no longer had. We were blessed to have had a wonderful marriage. We truly enjoyed spending time with each other, but the disease eventually stopped us from enjoying even the simplest activities. We could no longer go out to eat, or see a movie. Travel was out of the question as were conversations. He could listen and understand what was being said, but he couldn’t participate with more than a sentence or two. There were no more walks on the beach or inside jokes or cuddling up to watch a movie. I missed that. I missed sharing the things “normal” couples shared.
The third reason I blamed for my lack of devastation at his passing involved the ravages of the disease itself.
My husband had been a brilliant and highly active person before Lewy Body Dementia took over his brain. Within a few years, confusion replaced the brilliance and shuffling legs stifled his activity. He went from running 5k races to needing a wheel chair within a two year period. By the end, he could no longer lift a fork or even sip a drink of water. His passing was not peaceful and watching him die was heartbreaking. Once his body decided it’d had enough, it took six weeks for him to finally surrender to the disease. Six long weeks of watching him shut down with us expecting his passing at any moment for the last 10 days of that time period. My children and I sat by his side non-stop for 10 days, only leaving to take a quick shower and grab some food. By the time he passed, I was beyond exhausted. I felt as though I’d survived a battle and in many ways I had. Trauma, shock, and exhaustion took their toll on me. Is it any wonder I had nothing left to give?
Now as I look back at his passing and my odd reaction, it makes more sense to me. At the time, the relief I felt that the battle was finally over was stronger than the sorrow I felt for losing him. While the sadness is now coming to the surface, the intensity still isn’t as strong as when I lost my sister. I think I’ve narrowed it down to two basic reasons. For one, there was no relief when she died, only loss. Her illness didn’t alter my personal life or activities nor did it change my future. Her death did not free me from anything. All it did was take her from me.
But the second reason probably explains the difference more than the first. I began grieving at the time my husband was diagnosed. I actively mourned his passing for almost six years before he actually died. I went through the stages of grief, over and over during the course of his illness, having moments when the grief was so strong I could barely breathe.
Grief has no rules or timelines. For those losing a loved one to dementia, the grieving doesn’t start with their death, it begins with the diagnosis and continues for years.
As one of the caregivers in my support group said, “You can’t begin to heal until they are no longer suffering.”
I’ve decided to forgive myself for not grieving the way people are “supposed” to when losing their spouse. I will forgive myself for looking forward to a life free from caregiving duties. I’m going to travel and hike and do some stargazing. I’m going to return to my writing career and learn to play the violin. I know there will be more tears, but I’m no longer going to question when or how they fall. I’m going to allow my grief to follow its own course and quit second guessing the path it takes.
His suffering is over. I’m allowed to heal now.
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