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.

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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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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Medicare Therapy Rules Made Easy

Most of us take for granted that we can get out of bed in the morning and do all the things necessary to head out and face our day. You know… the simple everyday things like moving around our house, showering, getting dressed and eating breakfast. I might be a little foggy most mornings but I don’t think about whether I’ll face an enormous challenge in measuring out the coffee or pouring the milk. The point is the routine is just that…routine.

But if your parent is frail, you know that there’s nothing routine about these activities — that for them, doing even the simplest things just can’t be taken for granted anymore.

The mobility and functioning that’s essential to independence and safety suddenly becomes a big effort. And, Daughterhood really happens when we have to get involved in helping our parents do the things that they can no longer do by themselves. This is when their lives and ours get hard.

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A Go-To Guide For Understanding Your Aging Parents’ Rehabilitation

I was 30 weeks pregnant with my daughter when a routine doctor’s visit uncovered the fact that a disconnected placenta had cut her off from getting food and water. Essentially, she was starving in utero. Later that same day, my girl was born by emergency C-section weighing in at just over 2 pounds.

Her early birth kicked off years of specialized healthcare and education, most of which was therapy to help her walk, talk and manipulate the tools she’d need to do even the simplest things like eat, use a pencil, and play with her toys.

I’m happy to report that today she’s a strapping 5’7” teenager who plays softball and the piano. And, while her gritty personality had a lot to do with her success, so did the physical, occupational and speech therapists working with her.

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Creating a Resilient Response to Loss: The Special Challenge of Dementia

I’ve said many times that few things are more disorienting than the shift from being cared for by your parents to caring for your parents. The only thing that makes it harder is when your parent (or spouse) has dementia. This is quite possibly the most challenging of all situations.

Every Sunday, I allow myself the pleasure of spending time on Krista Tippett’s website, www.onbeing.org. A couple of weeks ago, I stumbled onto a podcast entitled, “The Myth of Closure” with family therapist Pauline Boss.

She’s coined the phrase “ambiguous loss,” which I find revelatory. Ambiguous loss refers to “a loss that is unclear, that has no resolution or closure”…. Where a loved one’s “status as absent or present remains hazy.

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Essential Websites for the Daughterhood Journey

These days you can barely open up your internet browser without stumbling across a website for caregivers. On the one hand, this is great but it can also be a problem — There are so many websites with advice and information for caregivers that it can be hard sometimes to find what you need or to even know where to start.

So I want to share some of my favorite sites, organized by topic — in the hopes that you can get what you need more easily.

But before I do, please promise me that you won’t let all these websites and the information they provide make you feel MORE overwhelmed than you already feel. You don’t have to consume it all in one sitting and you don’t need it all right now.

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7 Must-Have Books for Caregivers

Experts and former caregivers write books and blogs, and create websites to provide information that will help make caregiving easier. But they aren’t solving the real problem, which is that it’s really overwhelming to have to read and sort through all these resources in the first place.

It makes you feel like you have to become an aging expert – and practically learn an entirely new profession — just to make sure your parents are safe.  It’s a whole other job on top of the one you already have and the care you are already providing your mom or dad.

Also, if you are like me, there are just so many things you’d rather do — like walk your dogs or  spend time with your kids — than frantically search online for information. But what often happens is that you aren’t prepared and then you get caught out! – mom’s in the hospital and you do NOT know about observation stays and hospital-induced delirium or how to find a decent rehab situation and then you feel surprised, scared and like a failure!!

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