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.

Making Medicare Choices for Your Parents

“My dad doesn’t have Medicare!” A friend said to me recently.

“What?” I responded. This seemed unlikely. Pretty much everyone over age 65 has some form of Medicare and my friend’s dad is at least 90 years old.

Then he explained, “Dad has something called ‘Blue Cross advantage.’”

I explained that his dad does have Medicare but it’s a particular form of Medicare that private health plans (like BlueCross BlueShield) offer. It’s called “Medicare Advantage.”

Older adults sign up for Medicare Advantage because private insurers often fill the gaps in traditional Medicare coverage — like vision or dental coverage – and sometimes at a lower price. Also, Medicare Advantage can be a simpler and more streamlined way to deal with Medicare. You get everything — usually including drug coverage — in one big package.

Sound good?!
Not so fast.

As with everything in your world now, this is COMPLEX. There are trade-offs in choosing Medicare Advantage. Here are some tips and resources to help you figure it out.

Timing for Making Decisions

If you want to sign up for Medicare Advantage, change plans, or change from Medicare Advantage to traditional Medicare, the window for doing this is during the annual open season, which runs from mid-October to early December.

After that point, you’re generally locked into your decision for one year. But, you do get a test period from January 1st through mid-February to drop the coverage and return to traditional Medicare. And there are some other exceptions to the lock-in. Some examples of this are moving out of the plan’s service area or entering a nursing home.

Picking a Plan

Your parent will get a lot of lovely, glossy marketing materials from some of the plans. And at first glance it may seem easy to see which one looks like the best choice.

But, be cautious here. Plans can be really different in their cost and coverage. A good place to start is to use the government plan finder! It can be found at www.medicare.gov. Just click on “Find health & drug plans” from the home page.

To help you navigate the government website, invest in AARP’s Medicare for Dummies, and consult Chapter 11. The author guides you through the process.

If you want to sit down with a live person, the good news is that the government funds a resource in every state called the state health insurance program (SHIP). SHIP is a FREE, confidential and unbiased insurance counseling service.

Go to this website and call to make an appointment with your expert and free SHIP counselor. This can be especially helpful if your parent is also eligible for Medicaid, which is available to individuals whose income and assets are below certain levels. When your parent is eligible for BOTH Medicare and Medicaid, the SHIP can help you find special programs for “dual eligibles” that may be available in your state.

Appealing Coverage Decisions

The Daughterhood inbox is mostly filled with daughters upset about Medicare Advantage coverage decisions. While the private insurers are required to cover Medicare benefits, they can limit your provider network, and make decisions about how much of these benefits you can use.

For example, one daughter thought her dad should have been discharged from the hospital to a special rehabilitation center but the center wasn’t part of the plan’s network. Someone else I know couldn’t get as much skilled nursing facility care covered as she thought her dad needed. So she ended up paying out of pocket for the additional services.

What you need to know is that you have the RIGHT to ask your parent’s plan to provide or pay for services you think should be covered or continued. And, if the plan won’t cover what you ask for, there’s a four step appeals process, you can pursue, you know… with all your extra leisure time.

And finally, download here the one-page Daughterhood Understanding Medicare Options and put it on your fridge. When you look at it, imagine that we’re all having a pumpkin spice latte or a glass of wine together and know you’re not alone.

I’d LOVE to know your experiences figuring out your parents’ insurance options. Please go to the comments section and share what has helped you.

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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3 Mantras Every Caregiver Needs

If you are caring for aging parents, there are many websites and books you can use to get smart about how to manage and provide care for them.

But, it’s a good idea to remember that no matter how much planning you do, there’s no substitute for experience. Research is important but it’s overrated as a predictor of success. So, don’t feel bad if you can’t get a handle on all the stuff you feel like you need to know. So much of this work happens by just living it.

Because the cost of forgetting this truth is so high, I need mantras to help me feel less overwhelmed in the face of so much to do and learn.

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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.

Read More

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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