In Celebration of Caregivers

November is National Caregivers Month. I know, sounds like a dry blog topic. I’ll see if I can spice it up. But really, did you know that two out of five American adults are family caregivers? That’s 90 million! Hell no, we aren’t alone. And that’s up 30% from five years ago. I don’t know why it’s up, I didn’t research that; I assume because medical science is keeping people alive and we have forgotten how to let go. Or maybe a product of the recession wiping out retirement accounts, which is grim. Or maybe caregivers are coming out of the closet, and we should be out and proud. Also, we are saving the government a whole lot of money, since they neither have to pay for elder care nor pay us social security if we had to stop working to caregive. (And that needs to change.) Enough with the statistics.

Not all of those loved ones are cared for at home; but, okay, one more statistic: 90% of adults over age 65 would prefer to age at home. I would like to see how many over age 80 report that; I think we might change our minds. But my mother preferred it. At least, when pressed at 96, she said she did; when, perhaps, it felt too late to make a change. Somewhere between 70 and 90 I think there might be a sweet spot. And if you don’t want children to have to care for you—or if they aren’t able to, or you don’t have any—you better jump when it feels right. If you can afford it. (Or maybe it’s all we family caregivers will be able to afford, if Medicaid is still available. They’ll pay us later because they aren’t paying us now. Can you say catch-22?)

This is not what I thought I would be doing in what I consider the prime of my life. But here I am. And really, I’m not sure what I did think I would be doing; the time when I thought I knew was altered decades ago. I am lucky. Although my mother could not be here without me, she doesn’t require my constant presence. And she has the resources (for now) to hire someone to help her do a few activities. I am grateful for hired caregivers, and that my parents’ planning is making it possible.

The emotional stress, however, has been well-documented in this blog. And her mental capabilities are diminishing, meaning my life will change along with hers. We both take life week by week.

But here’s the thing: I do a good job of taking care of myself, and I ache for caregivers who aren’t able to make some of the choices I can, due to a lack of caregiver alternatives and/or money to pay for them. I worry about those who have resources, but feel like they are obligated to do it all, and let self-care fall by the wayside. I’m sure my mother would rather I did it all (and she has implied that, if not out and out said, so); but that was not my offer when I came and I have stuck to it. My life isn’t completely what I would choose, and neither is hers. Whose is?

One of the things I’m doing for myself is a third (since I’ve been here) writing retreat. That’s one a year! I was, to my great surprise, accepted into a Master Class at Hedgebrook on Whidbey Island beginning in just over a week. (Check out the video on their website.) I will be ensconced in a private cottage with sleeping loft and wood stove and will be fed, in all ways. These get-aways, along with camping each summer, are thanks to my far-away sister coming to be DOD. I have also had the great joy of time with the amazing Elliot, my 20-month-old grandson. That is thanks to my in-town sister. (See? I’m very lucky. I don’t know how caregivers without willing siblings manage.) I’ve also explored this great place to live in day trips to mountains and sea.

Writing this blog that is read by all of you has been life-giving. I am not alone, and neither are you. Someday I hope there will be a book about my experience of spending these years with my mother in my childhood home.

May blessings be heaped upon all of you who have, are, or will care for a loved one at some point in your life. It’s not for everyone, and that’s okay. But for those of us who do it, it is a gift. It is not tied up with a perfect bow,  sometimes the wrapping is tattered; and sometimes we would be more than happy to re-gift it. Sometimes it is a lump of coal. To all of you who read this blog: Thank you for being in it with me. And let’s celebrate us every month!

************

Two things for you for National Caregivers Month.

  1. I read this in a novel, of all places, this week. I plan to employ it.

Close your eyes. Draw a circle in the sand. Inside the circle are clear air, sunlight, birds singing. Nothing bad can enter the circle, not one bad memory, not one fear for the future, not one regret, not one perceived shortcoming.

Now, step into the circle, really picture yourself doing it. One leg, the other leg. And once you’re in the center, simply be. Root yourself. Let the peace soak into you, all the way into the marrow of your bones. Soak and soak and soak.

                                  — The Precious One, Marisa de los Santos

2. There are a lot of memoirs out there about the many ways those 90,000,000 Americans are caring for loved ones at end-of-life. I have compiled a list of those I have read in these three years. Perhaps you will find something helpful among them. Gretchen’s book list.

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4 thoughts on “In Celebration of Caregivers

  1. Thank you for a wonderful post. Let me apologize in advance for what will be a long comment. I think I just have to get it out of my system.

    Here are the words that jumped out at me: “I ache for caregivers who aren’t able to make some of the choices I can, due to financial restraints. I worry about those who could, but feel like they are obligated to do it all, and let self-care fall by the wayside. I’m sure my mother would rather I did it all (and she has implied that, if not out and out said, so); but that was not my offer when I came and I have stuck to it.” I was a caregiver who unwittingly let self-care go by the wayside and thus have a cautionary tale to tell.

    As an only child, I didn’t have siblings, willing or unwilling, to help care for my parents in their final years, so my parents moved across the country to be near me when they both got sick. Up until then, they didn’t have much interest in living near my husband and me or getting to know their two granddaughters. Even after the move, they were too sick and self-involved to have the energy to get to know the girls who, by then, were in high school. [Cue bitter music, up and over. ;-)]

    I said that they’d moved across the country to be “near me,” but they actually relocated an hour away from my house because they wanted to be in a less urban setting. The two-hour commute for me didn’t seem to enter their heads. Neither had they been willing to consider assisted living. My suggestions and spoken concerns were to no avail. I ended up biting my tongue and complying like a “good daughter” who wanted to please. Big mistake. I look back with deep regret for not standing up for myself and setting out conditions by which I was willing to participate in their care. In knowing what you were and were not willing to do, Gretchen, you were smarter, stronger, and more of your own person than I was. I admire that.

    When they moved, I had just started a graduate program in the hope of redirecting my career path at mid-life. My dad started the downhill slide the day I graduated in ’11. He died three months later, and the care of my mother, now an invalid, became my responsibility. I’ve written briefly here once before about her abusive nature, so I won’t reiterate. By the time she died a year and a half later, my mental and physical health was in tatters, as was that of my elder daughter who had just graduated from high school, and I was unable to re-start the job search that I’d put on hold for two years. I’m still unable to work, another two years later.

    So… let’s kindly say I’m not the poster child for caregiving! I was the one you *don’t* want to be, although I did the best I could, given the distance, circumstances, and the temperaments of all involved. My therapist repeatedly drags me out of the cesspool of self-blame by telling me all the things I did do, which she says were a lot more than most people are willing to do for their parents. I don’t know, though. To me and certainly to my mother, who gave me nothing but complaints and abuse, it wasn’t “good enough.” Please heed Gretchen’s words, dear comment readers, and follow her example! Take care of yourselves. Draw boundaries, especially if you have an abusive parent. Hopefully, you all have better relationships with your parents and yourselves than I did, as well as parents willing and able to consider how to make caregiving less burdensome to you and your partner and children.

    I’m sorry for any bitterness, martyrdom, and dysfunction seeping through my words. It’s a bad day in my head on this topic. Other days, I’m more at peace with how it went down. On the plus side, I’ve learned some serious lessons about what to do and not do if or when future caregiving falls to me or I need it myself.

    Thanks again for your wonderful writing on this topic, Gretchen, and for your patience today with my lengthy comment.

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    • Oh, Donna. So heartbreaking. Thank you so much for taking time to write your story (and I’m sure it’s the tip of the iceberg). It hard, I know, to find a place to tell a caregiving story that isn’t rosy with love and gratitude for the “opportunity” to care for a parent. I’m glad you felt safe here.

      We all have different parents, and different relationships with them. I confess I hoped that my mother and I would find our way to a different relationship if I took this on. (And we didn’t have a poor relationship, it just was kind of a non-relationship; rosy because we lived 2500 miles apart and everything is better over the phone.) But the truth is, I think, most will have the relationship during caregiving that we had before. (With the exception of the one written of by Jo Maeder in her memoir, “When I Married My Mother.” And frankly, I thought it sounded a tad unhealthy.)

      My mother is still guilt-racked that she didn’t care “better” for her own mother. I suspect she had hoped the same thing I had hoped. Difference is, I am fully aware that, though I can make some attitude adjustments—and I’m working on it, I really am—neither I nor my mother can change personalities; and my mother, armchair quarterbacking, seems to think she could and should have with her mother. She needed therapy after my grandmother died, she didn’t get it (and I mean “get it” in both senses of the word).

      So, dear one, in my humble opinion, you did the best you could do, which was not refuse care to your parents. Though that would have been absolutely okay, too. You gave what you had to give, and then some. Hat’s off! Now be in love with yourself and your family, but especially yourself.

      PS: I think the best thing we can do when the tables are turned, is try to be the parent we wish we had, as opposed to trying to get our children to not be who we were (which my mother has told me she is striving for). If that makes any sense. I do find myself trying to be the child I want to have when I am old. At least in my head; in practice I don’t do so well.

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