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.

At a recent conference, a man stood up and asked, “What’s the right place for someone with Alzheimer’s? At home or in a facility?”

“It depends,” is not a great answer but it’s usually the right one.

When we asked caregivers where they would most like to get help and information, they mostly told us that they’d like more help from people in their situation – from their friends and community. But most people enter into this life phase without a community into which they can connect, ask for advice, and share support. Over the past two years, through Daughterhood Circles, we’ve observed that connection to others leads to empowerment, which is often just the ability to accept your own judgment as good enough.

Here are some of pieces of wisdom I hear most often from Daughterhood Circle Leaders.

Recognize that you are a caregiver

A member of our San Diego daughterhood community said to me, “I was two years into caring for my aunt before I realized…. I am a caregiver. It was only then that I could really get the support I needed.”

Once you’ve named this activity, you can more easily find and use resources that can help. Resources that are named for the solutions they provide: “caregiving.” For example, you have to know you’re a caregiver to join the Caregiver Action Network, a great resource on caregiver information and training.

Acknowledge There’s a New Normal

In her book, A Bittersweet Season, on p. 69, Jane Gross explains, (paraphrased here) “Adult children…are hoping against hope that after a brief period of unpleasantness and inconvenience life will return to normal.”

On a practical level, there is real power and peace that comes from recognizing and acknowledging that there’s a new complexity to your life now and that “normal” looks different than it used to. It’s easier to accept the challenges when you stop comparing your life to what it used to be or what you think it should be. And it’s easier to take care of yourself when you recognize that you’re in it for the long haul.

Find a Community

In the case of the man who stood up at the conference looking for the one right answer to his question, the input of a community could help him weigh the many factors necessary to make the decision. And to accept that there isn’t a right path.

With the power of community to problem-solve, there’s less guilt left at each individual’s doorstep because community-based problem-solving empowers caregivers to seek good enough solutions rather than perfect solutions. It grounds their decision-making in the broader experiences of a community.

We launched Daughterhood Circles in support of our mission to end loneliness in caregiving. Please participate if you can. If there’s not a circle check out your local area agency on aging, church groups, local Alzheimer’s Association, libraries, and other groups to connect with people in their area. Ask your employer to sponsor a community of co-workers who can come together to support each other.

You can also connect with other caregivers through social media. If you follow DaughtersUnite, my friend April Koontz will quickly connect you with so many of the other wonderful caregiver bloggers out there, including Elizabeth Beighey Miller of the Happy Healthy Caregiver and Jodi Hempel of the Life: The Next Phase — both of whom, I’m proud to say, are Daughterhood Circle leaders.

Always remember: we can do hard things, just not alone.

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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Letting Go or “It’s not all about you”…

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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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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The Burden of “Self-Care”

Every time I turn on my computer I see some story or advice about the importance of self-care, especially for women.

We read about how Arianna Huffington is on us to get more sleep, which has the effect of keeping me up all night worrying about the bad things that will happen to me if I don’t. Or this doozy from Christiane Northrup where she advises caregivers to be sure to eat a balanced diet, get exercise and “indulge” themselves.

The job of taking care of aging parents can be a total life destroyer. It takes your money, your time, your ability to work, your friends, your relationships, your ability to do the things that you love, or to take a rest.

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Throwing In The Towel: The 6 Most Important Questions to Ask When You Want to Quit Caregiving

I don’t know anyone who feels like they can just up and quit taking care of a loved one who needs it. The very nature of this role is that it’s not something you choose.

That doesn’t mean that we don’t often, or even always, wish we could get off the caregiving train. The work’s not fun. It’s unrelenting, hard and requires tremendous sacrifice.

Often in life, quitting can be a healthy thing to do… ending a toxic relationship, leaving a miserable job, or even moving on from a comfortable career so that you can do something more rewarding.

But, there are also times when we, either can’t or don’t really want to stop. We just need to find some way for the pressure, fear, and exhaustion to ease up a little.

If this is your situation, here are 6 questions you need to ask yourself.

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4 Tips for Talking to Your Parents About Death

Earlier this year, I wrote a blog about how important it is to prepare for end-of-life decisions you might have to make on behalf of your parents. I wrote about advance directives, and having important conversations with doctors and family.

I culled so much good advice from books and articles that it inspired me to talk to my own family.

Here’s how that went down.

Me to Dad: So, Dad, I’m writing a blog about preparing for end-of-life decisions and it occurred to me that we haven’t really talked about what you and mom want.
Dad: You think we’re DYING!?
(End of conversation)

Me to Sister: So, I’ve figured this all out. I’ll tell Mom and Dad that you should be the financial power of attorney because you’re good with money and I’ll be the healthcare power of attorney because I’m good with healthcare
Sister: * ? *
Me: Oh, see, I was thinking we should get Mom and Dad to focus on creating their advance directives — you know, end-of-life planning
Sister: Is there a book I can read about this?
Me: You know I’m an expert, right? Don’t you trust me?
(End of conversation)

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