Someone I am close to is dying of dementia. Is dying. Is exhibiting the same process as my mother exhibited when her dying—which is what dementia is on the whole—accelerated in end stage. Falling, wheelchair, hospice, hospital bed, asking to be helped to leave…all I have embraced again as I’ve watched, and helped in the home, while another beloved elder slowly, and now very quickly, dies of dementia.
I remember in the beginning having a sense of foreboding in the pit of my stomach; how it all reminded me too much of my mother’s process and ending, and how a part of me felt sad in both a memorial and real-time way each time I entered the home and felt what was so familiar to me. Felt again. Not only going through the loss of this loved one but going through my body remembering the loss of my mother. Perhaps it was too much to ask of myself, but I could not abandon this family. I was healed enough from my own post-traumatic caregiving to assist. But that doesn’t mean I didn’t experience what I can only describe as emotional flashback as the medicines of the home, the waste, the misplaced items, the tissues tucked into every unremembered corner or shoe or book haunted me as memory. How familiar this was to me. How grateful my friend’s husband was each time I came, both still lucky to be in their home, both enduring what had ended for me with my mother only 18 months ago…and how I transitioned, again, pained, yet still happy to see this beloved elder each time I returned. And how also this was so very familiar to me.
I’m telling you this now because I want to you to embrace the reality of post-traumatic caregiving and to understand you may very well experience it. I want you to love up on yourself, deeply, if you do, knowing that this is paired with your loss and deepest grief once the journey ends for your loved one. When it ends, I want you to know you may very likely feel greatly relieved, but then you may also very likely feel filled with an almost indefinable emptiness. Love up on yourself, knowing this is part of it, knowing that when your loved one dies your personal journey is not entirely over. You have just been through something that has deeply defined your life, turned it into something of before and after. That dividing line is called before dementia and after dementia.
The sense of relief I felt after my mother died was underscored with my terrible grief that was underscored with the real trauma of it all. I still carry that, though it’s impact on my emotions has been softened with time. But there can be triggers, and helping my friend, watching her go through inexactly and exactly what my mother went through has left me feeling I want to flee. I want to move. I want to go to an entirely different state. I can’t, of course, or can’t right now, and I don’t think that is what I really want. What I recognize is that the sense of trauma has resurfaced in a big way for me because I have returned to an active dementia environment in which someone I care about is dying. In two weeks, when I’m scheduled to return, it’s very likely she may have transitioned. The family is being called to come. I said goodbye. I thanked her for all she’d given me. As motherly figures do, she said, as best she could, and which I understood, that she hadn’t done so much. I promised her she had and said, “I’ll see you later,” exactly as I had said to my mother each and every night I left her. My eyes filled with tears. That night, I sat in my recliner and wept. Here I was, again….
So, I just want you to know when it’s over it is not exactly over. Likely, you will go through a processing period, a time of grief, certainly, but also a time in which you will process the trauma of it all. Love up hard on yourself. Be aware of triggers. Returning to “normal” will take new shape. Consider assistance from a licensed therapist if you think you need it. Don’t be shocked by the emptiness you might feel. It’s all a part of it. You have been a hero. You have been a caregiver to a loved one with dementia. That is a life-altering experience. Take good care of yourself and know it will get better in time. You will recover, post-caregiving. Give yourself plenty of room for that recovery, knowing it is as much of an experience in gradation as was the dementia journey itself.