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.

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.

Read More

3 Powerful Ways to Avoid the Hospital

Americans have a love affair with hospitals.

We tend to think of doctors and nurses as the people who were working hard to make good grades while the rest of us were skipping class. I am pretty sure my brilliant, doctor friend Heather was walking around with a stethoscope at age four while I was still sticking Play-Doh up my nose.

This romantic affection for hospitals is not entirely misplaced. There are zillions of people who need life-saving surgery and who live longer because a hospital was able to treat them effectively. ERs in public hospitals handle an onslaught of some of society’s toughest cases; drug addiction, mental illness, and homelessness.

But, you don’t want to start your caregiver journey in a hospital.

Read More

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.

Read More

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.

Read More

What to Do When Your Best Efforts Aren’t Good Enough

My neighbor George is not a daughter but he’s certainly part of the daughterhood. You see, until a year ago, he spent most of his time taking care of his parents in the home they shared.

Now, from my perspective, he was the best kind of son any parents could hope to have and he fully embodied the spirit of honoring your mother and father.

But from his perspective, he was constantly failing.

Once he relayed a story to me about how he was in the kitchen one night making dinner for his parents – both bed bound in different rooms upstairs. As he’s running the food trays up and down the stairs, as he did for every meal, suddenly his mother calls out, “Come sit with me.”

Read More

4 Essential Tips for Finding the Best Home Care for Your Parents

The vast majority of frail older adults live at home — not in independent or assisted living and not in nursing homes. So, If you’re managing your parents’ care, sooner or later you’ll come up against the question of whether you should get them more help at home and how to go about it.

Hiring someone to help your parents can be expensive and awkward.  It’s often hard to get your parents to accept a paid caregiver into their home and even harder to find a person you can trust.  But, at the same time, it feels like doing so is the only way you can keep your parents where they are.

And, keeping them at home very often feels like the least heartbreaking way to proceed.

Read More

4 Common Traps To Avoid in Making the Move to Assisted Living

I long, as does every human being, to be at home wherever I find myself
Maya Angelou

About two months after my husband moved out, I noticed an awful smell coming from somewhere in the kitchen. I spent a whole week trying to locate the source. My kitchen cabinets have never been so clean. Naturally, all it took was getting half a dozen nine year old boys over for a birthday party to find eight dead baby possums right outside my kitchen window.

Read More
[gravityform id="1" title="false" description="false"]
  • This field is for validation purposes and should be left unchanged.