On today’s episode of All Home Care Matters, we’re doing something a little different. We know that the realities of caregiving are difficult, rewarding, and…complicated. We’ve had episodes where we detail some of the reasons for caregiver stress and burn out, and where we provide advice for caring for the caregiver.
This time, though, we want you to hear from actual caregivers about their experiences. The reality of caregiving is different for everyone, but it helps to understand what real people are facing on this journey. We’ve found that knowing other people’s experiences can help us to feel less alone – and can provide us with some insight about our own situations.
There are so many different types of caregivers out there. There are adult children caring for their parents, spouses caring for their partner, mothers caring for their children, grandchildren caring for their grandparents, and more. Today, we’ll share stories from multiple viewpoints, so you can have a better understanding of the true reality of a caregiver, across the spectrum.
Let’s get started.
When Priya Linson learned her mother had a brain tumor, she was the pregnant mother of a two-and-a-half-year-old child. She dropped everything to move from Boston to Chicago with her family, so she could be closer to her mother – and care for her, along with her toddler and new baby.
Linson is interviewed about this experience in a Medium article titled, “The Exhausting Balancing Act of Motherhood and Caregiving.” In the article, she shares her own experience with caring for her ailing mother, while mothering young children herself.
As the baby boomer generation gets older, and requires more care from their children, thousands of parents of young children are becoming caregivers. The reality is anything but easy – they are pouring all of their energy into giving and have to learn how to be there for multiple people at once, at all times of day.
This means figuring out how to take your kids to the park when your mother is too sick to leave the house that day. It means preparing different types of meals for different people and then washing each dish, after trying to get a picky toddler to eat his vegetables, and a picky senior eat hers.
It’s exhausting – and it’s also isolating. Because sandwich generation caregivers must devote all of themselves to their dependents, they have little to no time to devote to themselves. This can lead to feelings of depression, intense anxiety, and loneliness.
For Linson, relief came in the form of a support group. She realized that she was not alone after all, and that many others had been in her same shoes. She was able to learn from their experiences and feel supported on an intimate level. “There was something kind of reassuring,” she says in the article, “about what all humans go through when they’re faced with this. It’s just human to human.”
Carol Bradley Bursack wrote of her experience balancing the care of her aging mother with the care of her children in AgingCare.com. She explained that, “the challenges of being a member of the sandwich generation are many, but there is one universal issue that I ran into and continue to hear about as I converse with my readers and speak to groups: carefully weighing all of your loved ones’ needs.”
Bursack remembered one incident, when her son had an asthma attack at the same time that her mother’s medical alert system sounded. Luckily, her son recovered quickly, and she was able to run to her mother’s house – where she found that she had suffered a fall. Bursack was thankful that she was able to get there in time, but left wondering what might have happened if her son’s asthma attack was worse.
No one can choose one family member over another, so they have to figure out how to care for both simultaneously, even during extreme situations. That makes way to a type of stress rooted in the fear of “what if” situations. It’s enough to add enormous pressure to anyone’s life.
While members of the sandwich generation struggle to balance caring for kids and parents at the same time, other caregivers are struggling to get their loved one the right care in the first place. Simply put, their loved ones just won’t accept the help.
Medium writer Dresden wrote about the experience of caring for her grandmother in “Being Needed: the learning curves of caregiving.” She explained that one of the hardest parts of caring for her grandmother was that her grandmother did not want to accept that she needed help.
“There was a time that she would completely refuse to ask for help,” she writes. “Asking for assistance for anything was admitting something she did not want to admit-“ namely, that she was losing her independence.
Dresden’s grandmother’s reluctance to ask for help was frustrating for Dresden. It made daily tasks harder than they needed to be, and more frustrating. Her grandmother would simultaneously refuse help and get angry when she couldn’t accomplish a task herself.
Finally, Dresden found a solution. She gave her grandmother a baby monitor and told her that it was her “command base.” “You are the boss of this hub,” she told her, “when you have a need or desire, simply speak it and one of your ladies in waiting will come assist you.”
With a simple reframing of words, Dresden had convinced her grandmother that she was still in control. She got to be the boss who called the shots. “Grandmother loved that,” Dresden wrote.
While Dresden tries to get her grandmother to accept her care, other caregivers have to get creative to help their loved ones be active in the world again.
Loretta Wodward Veney is a caregiver for her mother, who has dementia. She was interviewed about her experience by AARP. For Veney, it’s all about finding something to occupy and engage her mother. She is adamant that she doesn’t want her mother to “waste away,” but staying on top of new activities is a challenge of creativity and patience. Still, it’s worth it to Veney to try.
“The main thing is,” Veney writes, “I can’t stand that blank stare – it unnerves me – so I try to keep her as active and involved as possible. Seeing her laugh and smile and enjoying herself – that’s all that really matters. It makes me feel close to her again. I would do anything for that smile.”
Veney has found that puzzles, legos, and music are especially effective. She also bought her mom a stuffed dog, which her mom thinks is real. The dog has brought a sense of comfort and companionship to her mother.
Assisting loved ones with daily needs and activities is certainly challenging for any caregiver, but there’s another universal struggle that most family caregivers will face on their journey. It’s likely one of the hardest parts of the job. That is the heartache that comes with watching their loved ones decline.
Lynda Dietz wrote a Medium article, “Alzheimer’s Disease From the Caregiver’s Perspective,” in which she shares her experience caring for her father-in-law with Alzheimer’s.
For Dietz, the everyday stresses of caregiving – like learning how to communicate after her father-in-law became increasingly repetitive, helping him manage his food, and dealing with changes in mood and emotion – have paled in comparison to the grief she feels watching him decline.
He was once a fun loving, active grandfather – and now he struggles to talk, move, or do much of anything. “I’ve come to realize Pop rarely laughs anymore,” she notes, “he smiles occasionally, but I miss his giggle.”
Balancing the everyday stresses of caring for her father-in-law with the heartache she feels seeing him decline is far from easy. In Dietz’s words, “the grieving process has begun already,” even though he hasn’t passed yet.
Carol Bradley Bursack, from AgingCare.com, had a similar experience with anticipatory grief. She writes that the emotions are deeply complicated. “We don’t usually identify the complex emotions we’re experiencing as such,” Bursack explains, “when you have a parent or spouse who used to be strong and capable but begins to ask for a little assistance, it’s no big deal, right? But deep down, there’s a knot in our hearts. We’re grieving various kinds of loss, including the loss of function that comes with advancing age or a chronic medical condition.”
Bursack wishes that she had done more to care for herself during that time. She was lost in grief, while balancing caring for her parents and children, and didn’t have time to deal with it. “When we are in the throes of caregiving,” she writes, “we often stuff our feelings deep down and focus on getting through the day.”
In the end, she wished she had been gentler to herself, and sought the support of others. If she had, the whole process may have been a little bit less painful.
Finally, there’s one aspect of caregiving that is often overlooked. Because caregiving is so exhausting, stressful, and even expensive, it’s easy for the conversation to focus on the negative (and the negative aspects SHOULD be spoken about). Still, that doesn’t mean we can’t bring attention to the positive realities of caregiving, too.
Tracy Grant cared for her husband when he was dying of cancer. She describes the experience as the “best seven months of my life” in her Medium Article, “I was my husband’s caregiver while he was dying of cancer.”
Now, she’s not trying to undercut how difficult it was. It was horrible to watch her husband lose his independence and to know that she would have to one day say goodbye. Still, the whole experience taught her just how precious life is – and she began to cherish it, and live in the present, more than she ever had before.
Grant writes, “being Bill’s caregiver meant being fully present for as many moments of every day as possible. Even ones where my formerly strong, independent spouse needed the type of help that would seem unthinkable months earlier.”
Grant learned to appreciate the little things and the difficulties that used to frustrate her (like “the petty, day-in-day-out grievances of an irksome coworker” or “a flat tire”) no longer got to her. She had learned that these things just didn’t matter in the grand scheme.
Caregiving is one of the most challenging duties on the planet – but it can also be one of the most rewarding. Caregivers share stresses, anxieties, and endless heartbreak. They also share a greater wisdom of the world and of life itself. They understand what matters and what doesn’t. They learn to see the beauty in the smallest of things. They learn to appreciate more, love more, and care more.
At the end of the day, the reality of caregiving is grief, stress, heartbreak, and a whole lotta love.
We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone who could benefit from this episode, please share it with them.
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