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.

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 the right one.  

And even for information that we all need, most of us don’t get it in time. For example, few people know that older adults’ health insurance (Medicare) doesn’t cover long-term home care, nursing home care or assisted living.

One big problem is that most people enter into this life phase without a community into which they can connect, ask for advice, and share support. And in the absence of shared language and community, the information we find lacks context and usability.

Over the past two years, through Daughterhood Circles, we’ve observed that connection to others leads to empowerment, which is really just the ability to accept your own judgment as good enough.

Here are the five lessons that empowering communities and relationships can teach us about our caregiving journey, and how to get plugged in.

Name The Change

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.”

Naming the change empowers caregivers to search, 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. Acknowledging the new normal empowers a caregiver to be the CEO of the situation; to invest in paid and unpaid long-term solutions. They realize that there are no awards for scaling this mountain alone.

Hard Problems Must Be Solved in 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.

Recognize — “See” — Your Accomplishments

As old ways of doing things die off, new ways always emerge. Caregivers grow when they stand up to an authoritative doctor, set boundaries with siblings, forgive their parents, learn to let go of little things, or to live more in the moment.

This is no small stuff. But we don’t build resilience and strength in a vacuum. We need these changes to be reinforced by people whose experiences mirror our own. Being seen for your work rewards and builds confidence in your ability to handle future challenges. As I like to say to my daughter, “Look at how good you are handling things.”

Laugh, Have Fun and Reassure Each Other.

Our best Daughterhood Circle moments have happened when we’re enjoying each other’s stories– like the hilarious rant one of our Circle members went on about getting her 80-something-year-old mom to stop climbing a ladder to water her plants. This is surely the best antidote to stress and unhappiness after all – just kickin’ back with your friends and taking a load off. Isn’t this what we all need, a context for our lives, and a reminder that it’s not always all that serious?

Get Connected Now

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 or you can’t get away, this fall we’ll be launching a web-based community forum to foster connection and community online.

But also, we encourage everyone to check out their 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.

Finally, check out this DailyCaring blog: 11 Caregiver Support Groups You’ll Want to Join.

You had your childhood friends and your motherhood friends. Now it’s time to make your daughterhood friends. Always remember, we can do hard things, just not alone.

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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Don’t be Surprised by Medicare’s Out-of-Pocket Costs

My friend Quentin Fottrell is the Moneyologist columnist over at MarketWatch. He recently shared with his facebook group a reader question about whether a woman should help her 75-year-old sister with medical-related credit card debt.

Two commenters asked, “Why does she have medical costs? Isn’t she on Medicare?” They thought that Medicare covered most healthcare costs for older adults.

Unfortunately, this simply isn’t true. While Medicare is the primary health insurer for most older adults, it only pays a part of the healthcare bill. There are three kinds of out-of-pocket costs that we face!

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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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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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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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3 Medicare Benefits You MUST Know About

“What do you mean Medicare doesn’t cover this?” My friend Sarah was caught off guard when I told her that her parent’s health insurance program doesn’t cover her parents’ care.

What I explained is that there’s a lot Medicare doesn’t cover and one of the biggest gaps is the ongoing, long-term care that people need when they become frail or disabled.

This care is expensive! Hiring someone to help with cooking, laundry, transportation or personal hygiene can cost around $20 per hour!

So what do families do? Well, one of two things. They pay for this care out of their savings… or much of the time, DAUGHTERS PROVIDE THE CARE THEMSELVES.

In fact, new research shows that most of the really frail older adults in this country don’t live in a nursing home. Most live at home and the vast majority — 2/3rds to 3/4s — are being cared for ONLY by family members — unpaid.

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3 Reasons You Might Not Be Getting the Help You Need

It’s 5 am on a Saturday morning and I’m lying awake with that cold, sweaty, anxious feeling that comes from deep existential angst masquerading as too many things to do. I know something has to change – that there’s GOT to be another way to look at my life..to live so that panic isn’t my default emotional channel.

One of the good things about being almost 50 is that I can look back on the last 20 years and realize that being anxious all the time doesn’t change much, regardless of what I’ve got on my plate. In other words, my responsibilities have always felt like too much, even when I was taking math tests in 5th grade.

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