‘Daughterhood Circles’ offer family caregivers a way to connect

(Article Reposted with permission from Memorywell.com)

Think of it as a mom’s group for a different and less joyful chapter of life.

One woman struggles to understand why her mom won’t leave her room. Another woman, whose mother now lives with her, wonders on really bad days how this became her life. A third is determined to remember her stepmother from a different time, before the disease that recently took her life made her so angry.

It’s a Tuesday evening at a tapas and wine bar in Marietta, Georgia, a suburb outside Atlanta, and seven women have gathered to honor one another.

“Here’s to caregivers,” says the organizer, as they raise and clink their glasses.

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It’s Not Your Fault

The emails come into our inbox. “Please help,” is usually how they start.

What so often follows is the same story with only slightly different details. A 90-something parent, living on social security, has fallen, gone to the hospital and now needs rehabilitation to get up and walking again. And Medicare – the health insurance program that covers nearly all older adults – would pay for the skilled rehab care but for one thing. The hospital never admitted the parent as an “inpatient”, despite a multiple night stay. Instead the parent was admitted under “observation,” which doesn’t count as an inpatient hospitalization. And without three nights of inpatient care, Medicare won’t pay for the subsequent skilled facility services.

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When Your Parents Won’t Listen

We asked daughterhood readers recently about the most stressful part of caregiving. Many responded that their biggest struggle is conflict with their parents. When their mother or father disagrees with or ignores safety or health-related directions. Things like not staying off the ladder to refusing to see a doctor.

It’s so hard to sit by and watch when our parents seem to need help but refuse to get it. We feel the full weight of responsibility for what happens to them but, at the same time, we have no control over their choices.

But we try. Women especially are taught that if they just try harder, get smarter, skinnier, dress better and be nicer, they’ll be okay. So it makes sense that this do-more mentality pervades our caregiving too. But this is a mean trap. We are — maybe not entirely consciously — judging our self-worth by whether we can stay in the ring without getting taken out by the realities of aging: mortality, frailty, disease and an upside down, seriously messed up healthcare system. Realities we shouldn’t even pretend to be able to influence.

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Caregiver’s Holiday Survival Guide

Let’s face it. Caregivers don’t get to participate much in the holidays. While everyone else is planning trips and parties, shopping for gifts or decorating the house, caregivers are still muscling through their daily grind.

If you’re taking care of a parent or loved one, you know what I mean. It’s hard to avoid feeling especially deprived this time of year. Whether you’re sitting in the ER again, dealing with frustrating dementia behaviors, or worrying about your mom’s depression, the misery of it is all just magnified this time of year. One of the hallmarks of caregiving is that it leaves you feeling like you’re missing out. Missing out on fun everyone else is having, missing out on your old life – before you were a caregiver. Of course, Holidays make this feeling even worse.

The simple fact is, whatever makes us sad, makes us sadder in December. Everything hard is harder. We feel the passage of time more acutely and our losses more profoundly. If your family member has dementia, it’s extra painful. This time of year is, after all, loaded with memories.

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It’s All About Connection: Caregivers Survival Guide

Other than death of a loved one, few things are more disorienting than making the shift from being cared for by your parents to caring for them.

This transition is made even more challenging because it usually comes as such a surprise. And it’s not just the biologically wired blind spot we have against our parents’ vulnerability. It’s the utter shock that, when it happens, there’s no place to turn for help. It’s like trying to climb a rock face without any toeholds or crevices where you can grab on, and then scaling it without a net.

The problem with our aging care system is that even though there’s a lot of information out there to help, the situations most caregivers confront are so incredibly complex, unique, and specific (such as, why won’t rehab providers accept my Dad?) that they can’t find exactly what they need. Or they want the exact right answer to a very complex question that doesn’t have right answers.

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6 Must-Know Tips for Making Hard Decisions

This summer at a caregiving event, a man wanted to know if it would be better for his mother, who has Alzheimer’s, to live at home with family or to live in a facility.

He asked me, “What’s the right thing to do?”

More recently, a woman worn out from caring for her husband with Parkinson’s and considering whether they should move to a facility said, “You know what I want. I just want to know the right thing to do.”

This is the conversation I have with caregivers all the time. There are so many decisions to make, from small things like what kinds of food your parent should eat, to the big stuff like whether to take away the car keys, where your parent should live, what kind of medical treatment is best or whether some recommended surgical procedure is a good idea.

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3 Resources to Ease Caregiver Money Worries

In a recent survey, AARP found that about three-quarters of all caregivers spend, on average, 20 percent of their household income on caregiving.

This is on top of the estimated $470 billion in unpaid care that they provide; and doesn’t include the potential lost income due to work-related strain that over half of caregivers report.

It’s clear that caring for a family member creates a financial hardship for many, and even a catastrophe for some; especially when caring for someone with dementia or Alzheimer’s Disease.

If you’ve experienced it, you know that there’s nothing worse than feeling financially strapped! Especially if you’re also feeling overwhelmed by caregiving responsibilities. So, if you are facing economic strain because of a caregiving situation, here are a few organizations that may be able to help.

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Caring for Aging Parents – A Sibling’s Survival Guide

There are many heartbreaking moments to navigate when our parents start to depend on us for care. But few are as painful as fighting with our siblings.

This doesn’t always happen. Sibling relationships can be a source of strength and comfort as parents grow older. But, more often than not, friends tell me about severe conflicts they have with their brothers and sisters, and the suffering it causes.

Like so much to do with caregiving, these clashes often come as a surprise. No one imagines that by caring for their aging parents, they’ll be thrust into such emotionally charged interactions with their siblings. It’s such a shock to go from seeing family once a year over the holidays to navigating our parents needs together daily.

Taking care of parents puts incredible stress on interactions between adult children. The fragile scaffolding of sibling relationships, so carefully constructed over a lifetime, often comes crashing down.

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What Caregivers Really Want Their Friends to Know

Remember when your first friends entered parenthood and you thought they seemed so boring and self-absorbed.

And, then… you had a baby and you got it?

Well, that’s happening again. Only this time, it’s because some of us have started taking care of our aging parents. And others are wondering what happened to their fun friends.

The truth is, caring for aging parents is an experience that’s hard to relate to unless you’re going through it. None of us can easily imagine just what life is like with a parent who needs help doing the simplest things like eating, getting in and out of bed or god forbid, going to the bathroom.

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Ending Loneliness in Caregiving

Other than death of a loved one, few things are more disorienting than making the shift from being cared for by your parents to caring for them.

This transition is made even more challenging because it usually comes as such a surprise. And it’s not just the biologically wired blind spot we have against our parents’ vulnerability. It’s the utter shock that, when it happens, there’s no place to turn for help. It’s like trying to climb a rock face without any toeholds or crevices where you can grab on, and then scaling it without a net.

The problem with our aging system is that even though there’s a lot of information out there to help, the situations most caregivers confront are so incredibly complex, unique and specific (e.g., Why won’t rehab providers accept my Dad?) that they can’t find exactly what they need. Or they want the one exact right answer to a very complex question that doesn’t have right answers.

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