As the first nursing home and assisted living facility residents get their COVID-19 vaccines, I feel like I’m seeing a little light at the end of the tunnel. I’ve been quiet on the blog this year because I’ve felt speechless – empty of any information, advice or even reassurance I could provide the millions of caregivers doing a hard job during the most difficult of times. I felt helpless as I watched the deaths mount and read story after story of isolation and disconnection.
I travel on airplanes a lot. Or at least I did before two weeks ago! Usually, my primary focus is on whether I can get a coffee refill and how much longer I can procrastinate doing work. So, basically, exactly the same as when I’m home minus the barking dog.
A big gust of turbulence can quickly change everything.
A bumpy ride doesn’t scare me, but it does refocus me, shifting my attention to the fact that I’m actually sitting in a tin can flying at 200 plus miles per hour 40,000 feet in the air and that there are other human beings with me. On the rare occasion we drop altitude suddenly, the worst-case scenario of plummeting out of the sky seems like a real possibility.
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.
Let’s be real for a moment. 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 you love, or even to take a rest.
I have a confession. I’ve been avoiding writing about Medicaid. It’s just so complicated it scares even me the expert. But Medicaid can be really important to daughterhood. Someday you might have to decide if it’s right for your parent. So, you have to get smart about it.
Why Medicaid is important? It’s important because it’s the safety net when everything falls apart.
When your frail mother has been caring for your Dad at home alone for five years and she can’t do it any longer. When 24 hour a day home care is too expensive, and still not enough to keep your dad safe. And, then when his nursing home care quickly depletes their savings.
(Article Reposted with permission from Memorywell.com)
Think of it as a mom’s group for a different and less joyful chapter of life.
One woman struggles to understand why her mom won’t leave her room. Another woman, whose mother now lives with her, wonders on really bad days how this became her life. A third is determined to remember her stepmother from a different time, before the disease that recently took her life made her so angry.
It’s a Tuesday evening at a tapas and wine bar in Marietta, Georgia, a suburb outside Atlanta, and seven women have gathered to honor one another.
“Here’s to caregivers,” says the organizer, as they raise and clink their glasses.
The emails come into our inbox. “Please help,” is usually how they start.
What so often follows is the same story with only slightly different details. A 90-something parent, living on social security, has fallen, gone to the hospital and now needs rehabilitation to get up and walking again. And Medicare – the health insurance program that covers nearly all older adults – would pay for the skilled rehab care but for one thing. The hospital never admitted the parent as an “inpatient”, despite a multiple night stay. Instead the parent was admitted under “observation,” which doesn’t count as an inpatient hospitalization. And without three nights of inpatient care, Medicare won’t pay for the subsequent skilled facility services.
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.
Let’s face it. Caregivers don’t get to participate much in the holidays. While everyone else is planning trips and parties, shopping for gifts or decorating the house, caregivers are still muscling through their daily grind.
If you’re taking care of a parent or loved one, you know what I mean. It’s hard to avoid feeling especially deprived this time of year. Whether you’re sitting in the ER again, dealing with frustrating dementia behaviors, or worrying about your mom’s depression, the misery of it is all just magnified this time of year. One of the hallmarks of caregiving is that it leaves you feeling like you’re missing out. Missing out on fun everyone else is having, missing out on your old life – before you were a caregiver. Of course, Holidays make this feeling even worse.
The simple fact is, whatever makes us sad, makes us sadder in December. Everything hard is harder. We feel the passage of time more acutely and our losses more profoundly. If your family member has dementia, it’s extra painful. This time of year is, after all, loaded with memories.
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.
“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.”