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Caregiver’s Toolbox Ep. 27 “The Loneliness of Being a Caregiver”

Ryan McEniff:

Welcome to The Caregiver’s Toolbox, Tools for Everyday Caregiving. On this podcast, we give education and information on topics related to senior healthcare. This podcast is brought to you by Minute Women Home Care, a home health agency located in Lexington, Massachusetts. My name’s Ryan McEniff, and let’s get into it.

Hello everybody, and welcome to another episode of The Caregiver’s Toolbox. So I’m sure some of you were wondering, we took a couple weeks or maybe even a couple months off in the summer. Things were crazy here at work, and we felt that because of the summer months, maybe it was a good time to take a break and after Labor Day get back into things. Over that time that we were there, we were coming up with some different ideas of having different type of formats of different types of podcasts, generally Janet and I talk about different topics and our opinions on the best ways to handle a situation when dealing with a loved one. And obviously with the name The Caregiver’s Toolbox, our goal is to help you provide care with your loved ones.

A new idea that we came up with was to share people’s stories about being a caregiver. There is so much information out on the internet that people can read, but not everybody can read it. So we thought a great idea would be to find caregiver stories, get permission to read them over our podcast, and give them credit. So our first story today is going to be from a woman named Lauren Modery. We connected with her on Twitter, and her Twitter handle will be in the comments section below. And she writes about the loneliness of being a caregiver. And you can find her article on Medium, and her Medium name and Twitter name is @hipstercrite. H-I-P-S-T-E-R-C-R-I-T-E. And if you want to read, please do. It’s over at Medium, and that link will be in the comment section as well. So let’s get into it.

The loneliness of being a caregiver. A culmination of anxious days and lonely nights led me to completely change my life at the age of 25. I was tired of hearing myself complain about my career confusion, my lackluster dating life, my choice overload. I wanted to flee the tsunami of uneven emotions and bad choices that plague your twenties, so I moved to a new city. I started my career path over, and I soon met my partner in love and art. If you’re unhappy, change your life became my new mantra, confirmed by the endless essays with similar verbiage that continued to germinate across the internet. With no dependents, I continued to live my adult life this way. That is why when I talked to my spouse and siblingless mother every day about her emotionally and physically challenging role of being my dear grandmother’s caretaker, there is a small piece of me, a dependent-free adult, who hates to see her beloved mother so distressed, that grossly thinks if you’re unhappy, change your life.

But that thought is always replaced by a salty reality. She cannot change the situation. For 65.7 million Americans, or 29% of the population, not being a caregiver is not an option. Whether it’s because of family obligations or financial reasons, these 65.7 million people cannot just “change their life,” even if 40 to 70% of caregivers show symptoms of depression or major depression. Even if 17 to 35% of caregivers say that their physical health is poor or fair, being a caregiver can be one of the most challenging, if not isolating jobs, one can ever face, and it is often one of the most underappreciated and understated.

My mother is an only child who for 35 years was an employee of my ambitious and strong-willed grandmother. They owned a woman’s clothing store in upstate New York and frequently made buying trips to the city. The mother and daughter duo spend nearly every day together. They were also friends, but the obvious superior in the friendship was my grandmother. And I believe that has played into my mother and grandmother’s current dynamic, which often includes words laced with resentment and frustration.

As my grandmother has gotten older, several of her negative traits have amplified. As my mother has gotten older, she no longer wants to be under her mother’s thumb. She would never abandon her mother, but this loyalty has come with a price: my mother’s own physical and mental wellbeing. I’ve witnessed over the past few years as my mother has become increasingly harried and forgetful. And though I try to help financially, emotionally, and with whatever tasks I can do when I’m visiting or when I’m afar, my mother and grandmother live across the street from one another in upstate New York, and I’m in Austin, Texas, there’s only so much I or anyone else can do to relieve the full burden of the caregiver, particularly when the loved one receiving the care insists on the sole support of the caregiver.

I say that caregiving is lonely because resources typically exist more for the loved one than the caregiver, though that is changing due to the rising population of caregivers. I say that caregiving is lonely because the caregiver often feels too guilty to share their own feelings of fear, frustration, and pain. I see that caregiving is lonely because the loved one being cared for may be cruel, unfair, abusive, or dismissive, but the caregiver can never share that truth. The one being cared for is the victim. The caregiver must be the strong one, no matter what has happened in the past. As for my mother, I’ve suggested exercise, support groups, meditation, or yoga to deal with her stress, all actions that are very limited in her small town.

And I’m always met with the same response. “I don’t have the time.” This phrase was something I didn’t accept or understand until I took on the temporary role of being my grandmother’s caregiver. By the end of the day, if the caregiver isn’t physically exhausted from the lifting, the escorting, the appointments, the errands, and in some cases, the bathing and cleaning, then the depression comes knocking, as caregivers spend an average of 20 to 40 hours a week providing care. They want to be the best caregiver to your loved one’s battles with feelings of being stagnant. Sleep is often the nicest reprieve.

I’ve watched over recent months as my mother has become increasingly lost in her role. I’ve watched her hit up against walls when my grandmother refuses the resources and support that would help both of them. I’ve watched as she comes home at the end of the day defeated. Caregiving is the cross predominantly the women of the 99% bear. Changing their lives is often a dream, unachievable until the inevitable comes. So when you’re spending time with your loved ones, reach out to your caregiver, friends, and family. Ask if you can help with any tasks, big or small. Even if the caregiver or loved one being cared for says no, push a little harder. They may need help, whether it’s just an ear or a hand, more than they’re letting on.

So that story again was called The Loneliness of Being a Caregiver, written by Lauren Modery on Medium, and again, her Twitter and her link to her story will in this comment section below. I thought it was just a powerful story of something that maybe isn’t talked about as often, in which are the negative aspects of being a caregiver. It can be very difficult feeling like you’re all alone, trying to help a loved one when you don’t have much support. And with private home care, we see it all the time. We see it where a family member, usually a woman, just like Lauren mentions, becomes the primary caregiver for a loved one, and that generally no one else is able to help out whether that’s because they don’t want to, or they can’t because they live in a different city or a different state.

And then it becomes, as Lauren said, the cross for that caregiver to bear, that they need to help 24 hours a day, seven days a week with that person, while also trying to function as their own self, whether that’s work, whether that’s family life, social life, or what seems like happens with Lauren’s mother, is a lot of those other outside tasks get put to the side and caregiving ends up becoming the primary role of somebody’s life.

So again, this is The Caregiver’s Toolbox. If you have any stories that you know about or you want to share, please do so. Send them to me, and I can certainly look at them and possibly read them on air. You can reach out to us, me personally, at GetBigRed on Twitter, or you can reach out to us through our Twitter handle, @MWhomecare. And I can take a look at the link, read through to it, and possibly put that up. We’re going to be adding this every once in a while, not every single week. Janet and I will be back next week with the new episode of The Caregiver’s Toolbox, Tools for Everyday Caregiving. Thank you very much for listening, and we’re back on our weekly schedule of new episodes every Tuesday. Have a great day.

Thank you for listening to The Caregiver’s Toolbox Podcast, which is brought to you by Minute Women Home Care services, located in Lexington, Massachusetts. Call us at 1-844-BEST-CARE if you have caregiving questions or needs. For comments regarding the podcast, find us on Twitter. Our handle is @MWhomecare. Thanks again, and we look forward to hearing from you.

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