I have managed my mother’s care for 18 months. I say managed because I no longer give her a shower, or make daily meals. I am the umbrella under which the caregivers do the daily work. I manage their moods and needs and keep them propped up. They are present and have feelings and voices. I can please them, assist them, relate to them. And they, with some super human skill I do not possess, take care of my failing mom and her dementia impaired world.
It frees me up to deal with my tapestry of guilt, compassion, anger, resentment, pity, appreciation, concern and sorrow over the state of my mother. I can no longer relate to her in a way that matters. She absorbs the emotional tone of the day in tiny bites, and it takes 100 bites over a period of 50 days for her to arrive at a conclusion. “I am safe”. She knows when I am stressed or tired, irritated or rushed. She feels the “tone” but not the reality of why or how to make it easier for me. So I feel more guilt for not being able to slow down to the pace of her mind where I could add a tiny crumb to her sensory databank, informing her that she is safe.
In my rush to get the task done, to pass the baton to the caregiver, I add a bigger crumb of weight to my guilt for not being able to want to spend time with her. For not wanting to make idle and inane conversation, for somehow being incapable of agreement with her terrible opinions of others or to collude with memories that are so distorted.
The caregiver can. I am tethered to years of emotions that are shockingly stored somewhere and that well up with so much force I am frightened by them. I hear in her voice some familar tone from my childhood that was painful then and unbearable now. I am completely intolerant. Only when she is in pain and very passive and receptive can I muster compassion and concern and then I can work on her behalf. As soon as she returns to her bossy, critical self, the walls go up and I wonder how long can she live with her uncomfortable health challenges and an absence of meaningful connections? And pile on more guilt for not wanting to prolong her life.
If you are the caregiver to a person with lots of needs, you understand immediately what I am struggling with, if you are not a caregiver, two pages of explanation will not get you there. It is a strange brew of sorrow, coated in anger, marinated in pity, baked in confusion, weighted with knowing you are going to feel terrible when they pass no matter how you handle the Now.
But you are doing the work, making them safe, keeping them clean, doing the laundry, feeding them well, providing some entertainment. You just keep providing all these things in the knowledge this part of your life won’t last forever, and in that glimmer of freedom coming, is hidden another crumb of guilt.