Coping with the grief of losing your loved one to dementia is not easy, especially as they move deeper into the condition and all “hopes” of certain stability fade. They begin to enter late-moderate stage or the beginning of end-stage. Their ability to speak may change, or they may ramble on nonsensically. To the degree we are able to embrace the terrible ambiguity of dementia, its contradictory terms, determines, in a large sense, our capacity to respond without crumbling. The opposing aspects at the heart of dementia, the here/not here of it, the loss of your loved one while they are sitting right beside you, gone/not gone, are some of the most difficult to experience if we can’t embrace a way to think of them that accepts dementia’s inherently contradictory terms. That is, the degree to which we accept these contradictions determines our ability to continue connecting with our loved one in new and innovative ways.
In the support group I now co-facilitate we have often talked about ambiguous loss, the special kind of grief this leads to, what Dr. Pauline Boss calls “frozen grief.” In my particular case, my grief over my mother was never far from my sense, and I didn’t experience it exactly as frozen. What I experienced was that the grief was there, the pain was there, but as long as I could see, here, feel, talk with and touch my mother, my grief never reached its inevitable peak: The absolutely unambiguous loss of my mother once she died. In this moment, my grief was full and it lasted a good year and then some before I began turning corners toward acceptance of my final loss and healing from the trauma this journey with my mother caused me for so many reasons, not the least of which was the fact that my mother was placed at the height of the Covid-19 pandemic with all its ensuing healthcare chaos.
I often think one of the biggest obstacle while traveling with a loved one through their dementia journey is the resistance to the heartache it causes. This is another ambiguity: We are happy to see our loved one and hurt to see them at the same time. We don’t want to walk around like weeping willows, but we have such pain in our hearts. We are suffering. Why should we tell ourselves not to feel this? Because the world won’t understand? Because we are embarrassed? Because happiness is supposed to be? Dementia causes us to suffer, and my experience of my pain was that to shutter it only made it worse. The way I found to honor my grief was to not linger too long with those who were made uncomfortable by it.
It's understandable that it’s necessary to put on a happy face in certain circumstances. I remember feeling so glad just to go to work because it was the one place where I could actually forget about Mom, at least for a few hours. There is no doubt: Dementia is a disruptor. It turns our lives upside down. It changes utterly our relationship to our loved one—and then again, it doesn’t change it at all. Mostly, we know our loved one is dying, actively, and the process is slow, then fast, and we are stuck in that ambiguous ether of uncertainty: They are dying, but we don’t know exactly when, and yet we sense when it gets nearer. This sense of uncertainty heightens the sense of loss and grief.
I intuited much of what my mother went through. Weeks before she nearly choked to death I was sounding the alarm that she was headed toward a choking incident. Months before my mother fell I tried to alert people to her balance becoming less stable, and in fact brought it up to my support group facilitator who recommended a low-sole shoe. But when the brain stops communicating with small muscle groups, when the toes no longer function, falling starts, and so it happened to my mother. And so, I had to accept this signal of the degree to which her brain was continuing to be damaged by the ravages of vascular dementia.
It was sad. It was hurtful. It was scary. We both felt this way. But my mother was still there. Till the end, though she could no longer speak, she spoke through smiles, through relaxation, through a beam of excitement whenever I entered her room. I say all this now because I want you to know you have done or are still doing the very best you can, and though there remain contradictions and fears, ups and downs, every minute you spend with your loved one is a time of reprieve for them even if it doesn’t seem so. Don’t be afraid to step back, slow down. Don’t be afraid to let go of perfections in order just to sit quietly with your loved one. Being present is just this: Being present. You don’t have to wrack yourself by doing. In the months before my mother died, much of our time was spent in silent walks, or sitting with the TV on or off in her room or in the Main Room of the facility. In the first year of her placement I would arrive around 6pm and once Covid restrictions were lifted we would watch whole movies, have coffee and cookies, go out on the patio on warm evenings or late afternoons. In the last nine months, I had to switch my schedule, arrive earlier, help to feed my mother and end the evening with a stroll, Mom now always in a wheelchair.
So, while you can, just embrace the moment. Embrace your loved one’s condition. Be present for them, as you are for yourself. This is it. One day at a time. Release yourself from expectation. Whatever is today, is.