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Supporting Sexuality as a Family Caregiver

November 24, 2014

Wow, it’s been nearly three months since my last blog post. Yikes! The good news is that much of that time I’ve been super productive writing the memoir I told you about a year ago. My Mother’s Cross: Cancer, Kink, Sex and Death has now grown to over 40,000 words, and four complete chapters, with two more chapters halfway there. (In lieu of flowers, please send book contracts!)

Meanwhile, I’ve been remiss in letting you know that November is National Family Caregivers Month. Fortunately, there’s still a week left, so I’m going to kick of Thanksgiving week with a few words of gratitude for family caregivers, and some questions that I think are important to think about when the caregiving falls to us.

First of all, if you are a caregiver, and many of us are or have been, thank you. Thank you for the labor, the love, the compassion and the empathy that you share with the people whose care you provide. President Obama, in a proclamation issued at the beginning of the month, notes the courage it takes to be a family caregiver, and notes that:

“In the United States, more than 60 million caregivers provide invaluable strength and assistance to their family members, and as the number of older Americans rises, so will the number of caregivers. Many of these dedicated people work full time and raise children of their own while also caring for the needs of their loved ones. Caregivers support the independence of their family members and enable them to more fully participate in their communities, and as a Nation, we have an obligation to empower these selfless individuals.”

A couple of things are interesting about that statement, aside from the astonishing number of people who are doing family caregiving. One is the clear distinction being made between parenting and caregiving. That’s an issue for another post. Second is the emphasis that caregivers support the independence of those they are caring for, and third is the obligation we have to empower caregivers in doing whatever they can to support that independence and enable the people they care to live their lives as fully as possible.

So, here’s the question I’d like us all to ponder: What can we do to empower caregivers so that they can supporting the sexuality of the family members for whom they are caring?

In a recent conversation on Facebook a bunch of us were talking about the lessons our parents taught us, often indirectly through the books they provided, about sexual health and sexual expression. For some of us, it might now be our turn to help our parents understand new lessons about sexual health and expression. What are the best ways for us to do that, without reinforcing shame or stigma, and without straining the delicate caregiving relationships we’ve worked to build?

Some of the issues might be easy to address but hard to discuss. For example, what if your aging mother has enjoyed using a vibrator as part of her self-pleasuring, but her arthritis now prevents her from being able to plug it in? Will she ask you for help or suffer in silence? Will she need your help to buy a battery powered model? Would you think to ask her if there is anything she needs to help her have pleasure? (Have you rummaged through her drawers while looking for the favorite scarf she seems to have lost and been surprised by the vibrator but too reluctant to bring it up?)

Other issues may be more complex. What if your aging parents are living in an assisted living community and one of them is suffering from dementia, while the other provides as much care as possible and you provide the rest? What if that more able parent has started a new romance with a person down the street. Should you have a talk about condoms and the rise in sexually transmitted infections in retirement communities?

With my mother, as you know if you’ve read earlier posts in the series My Mother’s Cross, talking openly about sexuality was not a problem until after she got sick. Somehow, then, all of our attention went to her medical care and her sexual needs seemed to fade into the background. But what if they were still there, and we just weren’t talking about them? It’s interesting to me, two years after her death, to realize just how significantly illness trumped pleasure, and I’d encourage anyone who is now faced with the opportunity and challenge of caring for a loved one to resist that tendency. People do not necessarily lose their erotic desires or their longing for sexual pleasure because they’ve aged, fallen ill, lost strength or mobility, or suffered some other change in their abilities. But someone has to start the conversation, and for the person suddenly – or not so suddenly – in need of care, feelings of vulnerability might make it hard to be the initiator.

So, what concerns will you have about initiating conversations with your aging, ill or disabled family members about how to best support their sexuality? What strategies have worked for your family? Leave a comment, share some courage, and let’s see if we can empower each other.

To see what others are writing about family caregiving this month, follow hashtag #CareComesHome

For more information about family caregiving, check out National Alliance for Caregiving and Caregiver Action Network



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