By Pam Luedtke
My father has Alzheimer’s disease and was moved into a specialized “memory care” facility about 18 months ago. All things considered, he is doing well there, is well cared for, and appears to feel relaxed and safe. He is quite confused however, and lives in a very small window of awareness. He still knows his wife and family members, but he recognizes little else.
My mother visits him most days and takes him for outings when she can. Their visits are generally positive and they are happy to reconnect and be together. But when it is time for my mother to end the visit and leave, things can often get rather sticky. My mother becomes anxious and flustered; she doesn’t know what to say or do. The suggestions from her support group are suddenly beyond her reach. Sometimes she lingers too long, sometimes she bolts for the door. It is in these moments that the guilt comes out.
My parents have been married for sixty-six years this June. After my father was diagnosed nine years ago, my mother took care of him at home, and watched over him as he slipped deeper and deeper into the state of confusion and unknowing that goes with his illness. As one support worker told my mother. . .“he is on a journey, and you can’t go with him”.
When things reached a point where my mother could no longer manage my father’s care, we moved him into the memory care unit. But this did not happen easily. In fact, for my mother, the transition was extremely rough.
My mother had been holding tight to the idea that she was going to take care of my father at home until the end. No one else could take care of him as well as she could. But as strongly as she felt this way, she was gradually realizing the situation was no longer working. Once, after a particularly bad day, she told me that she didn’t want the two of them to end up hating each other. I thought she was going to go ahead at that point and move my father, but she could not bring herself to go through with it. It wasn’t until a medical crisis of her own forced the issue and made the decision for her. Apparently, this is not so unusual in such situations. A support worker told me. . . “sometimes we just have to wait for a crisis.”
And the crisis continued on for awhile. In the year following my father’s move, my mother underwent three separate surgeries, several months apart. In between these episodes, she talked about bringing my father back home to live again; maybe bringing in a caregiver to help; finding some way to make it work. A part of her knew this would not happen, could not happen; but she continued to feel she should be doing this for him, and it wasn’t right that she wasn’t able to. She lay awake at night worrying about him. She talked incessantly about every detail of his care. She seemed to think of little other than how my father was doing and what she needed to do for him. The guilt had really set in.
But why the guilt? Why did my mother seem to feel that she had failed her husband because she couldn’t take care of him any longer, and then betrayed him by placing him in a nursing home? I struggled to understand this. It didn’t reflect what had actually happened. Without a doubt, this is a difficult situation. For two people who have been together for a lifetime, facing illness and separation is a huge challenge in and of itself. And to her credit, my mother does the best she can in the situation, does not back down, and keeps plugging away. But does guilt belong in the equation?
What is the purpose of guilt anyway? In the broadest sense, I can see how guilt can be helpful to us by informing and instructing us. Perhaps in the grand design of things, guilt is intended to be there to point us to something we may have done which has been hurtful or harmful in the world. It can help us learn something and become a better person.
But when we feel guilt over something that we don’t need to feel guilty about, such as placing a loved one in a care facility when it is appropriate to do so, maybe then we need to look deeper. The guilt is not being used as designed, but is about something else. Perhaps it is about guilt from past actions that have never been healed. Perhaps it is about punishing ourselves for falling short of our own expectations, even if they are unrealistic. And then again, perhaps it is not guilt at all. Perhaps it is about feeling helpless in the face of something we cannot fix. Perhaps it is about caring so much it hurts. Or maybe being afraid of how much we care.
Both my brother and I have talked with my mother about her struggle with this issue. We’ve tried to reassure her that she did everything she could and has nothing to feel guilty about. But she will have none of it. She tells us that this is just the way it is in such situations. . . everyone feels this way. But, does it really need to be this way? Do we not have a choice?
There are probably many of us, like my mother, who do not realize how guilty we feel, nor why we feel this way. We do not realize how much additional suffering our guilt brings to ourselves, and probably others. If we did, perhaps we would decide that the guilt is not really worth it, it is not helping, and the situation is difficult enough as it is already. We would go on to free ourselves from its grip. And then, hopefully, to explore what lies beyond it.