For Caregivers of Spouses With Dementia, a Redefinition of Marriage
How we need to change our expectations when we become caregivers
In my 50s, I realized that I was no longer the fiercely independent, self-sufficient, can-do-and-proud-of-it-person I was when I was younger. A bad back and surgery made me more dependent on my partner’s help. I leaned on him, and when his rheumatoid arthritis flared, he leaned on me. Mutual caring kept us vital, and it still does today, as we approach our eighties. In marriages like ours, in midlife and beyond, the definition of a good spousal relationship changes from self-sufficiency to increasing interdependence. It is necessary and good to have someone to lean on, and it is good to feel needed by another.
But when your spouse is living with dementia, you need to change your perception of your relationship even more radically. Perfection is no longer a realistic goal, and while the loss of your loved one is ambiguous - he or she is both here and not here, physically present but psychologically absent - the possibility of some kind of relationship remains. Instead of continuing to try to make the relationship perfect, shift to a new value — good enough.
As the nation's population ages, and the number of couples over 50 grows, professionals and family members alike must allow for, and not judge, “good enough" marriages. In our culture, the idea that good enough could be the best outcome for a marriage is controversial. But in my recent book, Loving Someone Who Has Dementia (Jossey-Bass, 2011), I emphasize the hope in the good enough relationship. Actively making the choice to view your relationship in a new light should not be seen as settling or surrendering but rather as choosing a perspective that better fits the circumstances. If you change the bar, you don’t have to feel you are failing. And because you make the choice, you still have self-control, the dignity of free will, and the possibility of new hope. If you let go of what society deems the ideal marital relationship, you are freed from a standard that realistically you can no longer meet, and able to find satisfaction in the marriage that fits your own situation.
Grieve What's Lost, Transform What Remains
In my clinical work, people who love someone with dementia tell me it’s like “loving half a person” or “living with a stranger.” We talk about discovering a new, less-than-perfect relationship, but first they must grieve the part of their relationship that has been irretrievably lost. Such loss is initially overwhelming, but eventually can be transformed into something more bearable.
One wife who had been caregiving for years told me, "Even I wonder why I can sit daily by his side as I play tapes, relate bits and pieces of news, hold his hand, tell him I love him. Yet I am content when I am with him, even though I grieve for the loss of his smile, the sound of my name on his lips.” She was able to balance what she still had with what she lost in a good-enough way.
Recently, I saw a man in my office who said he felt hopeless. He was angry about having to care for his formerly competent wife. He confessed that he wished it was over and then was immobilized by guilt. Over the months, we talked about his need to stay connected with other people. In his case, this meant golfing with his friends one day a week. With this outlet, paradoxically, he was able to feel more connected to his wife. She needed a lot of help, but he realized he did not have to be the only helper in order to be a good husband. He could be part of a team. His relationship — and his helping — became good enough. With this transformation, his anger and ambivalence lessened. Accepting the good enough released him, and both he and his wife were better off.
When faced with spouses who have conditions that have no cure, we can lower our stress if we continue to live lives of creativity and curiosity instead of trying to fix the problem or meet impossible expectations. The relationship may no longer be reciprocal, but we can learn to accept the absurdity of a loved one being both there and not there. We can accept the good enough in our situation by embracing the ambiguities and shaping our lives without the noise of previous expectations. If we can do that, we will no longer be captives of the inevitable losses of aging.
The caregiver journey is painful, exhausting, and long. There is ongoing sadness and grief. But hopefully, for the sake of your health, there can also be acceptance of the good enough. It’s not about conquering or failing the trials of aging, but rather deepening our humanity by accepting the middle ground.