Sharing the Caring
September 26, 2017

“The best long-term care insurance in our country is a conscientious daughter”, quoted a recent article in the New York Times, “The Daughter Care System”.

While the article notes that more men have been stepping up as caregivers in the past few years, the truth is “Most of the care for older adults in the United States – from paying the bills to feeding, bathing and dressing – falls on unpaid caregivers, and most of them are women.” This is especially true for Alzheimer’s Disease and other dementias.

That sobering reality is unlikely to change anytime soon – so, how can ‘conscientious’ daughters, wives, sisters, or mothers share our caregiving role or at the very least, build up our own support network? Can we engage the men in our lives to help?

I come from a long line of caregivers, at least on my Mom’s side of the family. I was lucky enough to grow up in an extended Irish American family, where family get-togethers were frequent and always spanned the generations: grandparents, aunts and uncles, parents, and their children. Living near each other certainly made it easier to be together in good times and to be there for each other in hard times. Yes, we’re lucky!

At various times, my Nana, an aunt or my Mom was the primary caregiver for a spouse, parent or sibling as their health declined or serious illness (stroke, cancer, diabetes) impacted their functioning and care needs increased. Fortunately, they were never the sole caregiver – and help came from the rest of the family; each of us doing what we could. The women did more of the hands-on caregiving, the men usually offered practical assistance: transportation, home repair, picking up medication, cooking, etc.

My Mom, the eldest of four, outlived her siblings. As her brother, then two sisters, faced health crises and then terminal illness, Mom was by their side every step of their painful journeys – offering comfort, support, care, and love. Her children witnessed her devotion – and being raised in the “family tradition” of caregiving, we did our best to lend our support.

My Mom is 91 now, and it’s her turn to receive the love, support and devotion she has given to family and other loved ones all her life. She has dementia now and has been in a nursing home the past 7 years. My sister and I visit nearly every day – my sister at lunchtime, me at dinner. But we are not the only caregivers in my Mom’s life – her caregiving “team” includes my brother, brother-in-law, sister-in-law, niece and nephew and their spouses, many of whom see Mom once a week; the kids in our family visit their “Nana D” often.

Trust me, I know my family is unusual. We’re also fortunate. Many families are spread out geographically; we all live within 30 minutes of each other and the nursing home. Long-distance caregiving presents challenges we don’t have to face – I feel for caregivers who do.

But aside from our proximity, how do we make it work? Here are some lessons I’ve learned on my family’s caregiving journey:

1. Try to avoid “keeping score” – most of us have something to contribute to the care of a loved one but it’s unrealistic to expect that every family member (or friend) will be able to contribute equally (the same amount of time, tasks, skills). Start with whatever people can do, appreciate their contribution, and build on it when and where you can.

2. Communicate with each other – about what’s happening with your loved one, what needs are emerging and how they might help you manage them. Texting helps my sister and I keep the rest of our team informed, updated and engaged – and allows them to see a need/opportunity to step up and help, cover to give us a break, etc., without being asked. Sharing updates about Mom’s “good days” keeps everyone’s spirits up and helps us hang in there with her when she’s not doing well.

3. Recognize and accept your own limits – no matter how dedicated or devoted we are, none of us can “do it all” and we’re usually hurting ourselves if we try. My sister and I have learned to take a break without feeling guilty if no one else is able to cover/visit Mom in our place that day.

4. Build alliances with professionals involved in your loved one’s care – admittedly, turnover among long-term care staff can make this challenging, and it often seems like the “best” staff are the ones who find better options and move on. But if you’re able to build trust and mutual respect with professionals on your loved one’s care team, they become a critical extension of your family’s caregiving. Over the years, we’ve been lucky to enlist two wonderful nurses who are our “go to” staff we rely on to care for (and care about) our Mom, address problems, and support our involvement in her care.

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