Who cares for the caregivers?

I was recently honoured to be invited as a guest speaker to a caregivers group. The group consisted of 12 people, who are all principle caregivers to loved ones with dementia, Parkinson’s, or some form of mental illness. All are suffering under the burden of care. They come to this group once a month for respite.

The theme of the meeting was meant to be about the "shift in power" in relationships; when one partner becomes ill and the other has to take over. I was prepared to talk about the shift in financial power and decision making in the couple – but as we went around the group for introductions and I heard their stories it became very clear to me that it was more specifically a shift in responsibility – and that it was not just in the financial realm but also the emotional and the psychological.

Re-framing it from a change in the balance of power, to a change in the balance of responsibility was very helpful. This was a group of 11 women and one man – I’m not sure how these women have been socialized in terms of sitting with “power” or “control”, how “what is the right thing to do” gets decided? “I am making decisions with “his” money and I feel bad about it – it’s not what he says he wants. It makes me feel guilty.” However “he” is no longer capable of being rational and so there is no easy answer, no peace. Understanding it from the point of view of responsibility, and acknowledging that there is no malice in any decision being made, brought a palpable relief to one caregiver.  

We talked about the shift in emotional responsibility. Most had partners who were not only ill but now also depressed, depression being very common among people who are conscious of their loss of autonomy, their increased dependence on others – even if it is your wife of 40 years.  So when the ill partner becomes depressed, the caretaker believes it’s impossible herself to express any frustration, sadness, or fear – after all, they are well. What about when she feels hopeless at the hugeness of the task in front of her, feels her powerlessness to affect the depression, feels overwhelmed with all the responsibility, perhaps courts a bout of depression herself?

Unanimously what helped most was their connectedness, whether to their own children, friends, or other supports – even this particular group – that support and connection helped them keep a focus. These are the people that reminded them to take care of themselves too. These are the people who lend an ear, who listen when the caretaker needs to share. These supports are life lines!

They spoke of their fear of becoming ill themselves, but not only because that in and of itself would be frightening, but they worried about who would care for them as well as their partners. Many saw the fear in their partners’ eyes when they felt ill. Life can be so very fragile; they live on the edge of it to a large degree.

What of their own loss in all of this, of a companion, a lover, a husband and wife, of someone to hold hands with, to talk to, to sing with? They come to this group to mourn that loss. I asked, “For all of you, your scripts have changed dramatically from what you had originally believed would be your life’s story, how do you cope?” One amazing woman said you learn to live day to day, you take the best that every day has to offer and you cherish it, you recognize all you have to be grateful for and you do that – revel in gratitude, it’s a day to day process.

What strength. What courage. What beauty and resilience.