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A PERSONAL MESSAGE FROM UPWORTHY
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caregivers

Family

Med student drops out of school to spend time with mother after cancer diagnosis

This is beautiful.

Image pulled from YouTube video.

Mother and daughter enjoy each others company on the couch.

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Ad Council + AARP

When her mother was diagnosed with stage 4 pancreatic cancer, this medical student knew what she had to do.

She dropped out of school for a year to be with her mom and help her navigate the procedures, helpers, hospice workers, medications, and so many other things that suddenly occupied her mother's life, 24/7.

"I decided to take a year off from medical school and spend the time with her, and I just feel like I want to grasp at every moment I can, really. A typical day of caring for my mom usually includes preparing meals, running errands, grocery shopping, and picking up prescriptions. I work a lot behind the scenes organizing the nursing, a nursing assistant to come and help us." — Hannah Roberts

It's not something that everybody can do.

It's grueling, wonderful, painful, life-affirming, terrifying, rewarding, and many more things, all wrapped up into one big ball of ... life.

I really hope when my mother reaches the end of her life, I have a chance (and the ability) to be there for her in the same manner.

Watching a relative go through something like this is probably not in anybody's top 10 list of things they really want to do with their lives, but helping them cope is certainly in the realm of being a loving human being.

Getting them through it with grace and dignity — I cannot think of a greater gift to give.

Some facts, all from National Alliance for Caregiving and AARP:

  1. Nearly 1/4 of all of America's caregivers are Millennials, between the ages of 18—34, and they're equally likely to be male or female.

  2. The value — that is, if it were paid — of caregiving by family members was approximately $470 billion per year in 2013.

  3. 40 million family caregivers helped another adult or loved one carry out daily activities
  4. More than half (55%) of family caregivers report being overwhelmed by the amount of care their family member needs.

Caregivers are the unsung heroes of modern life, and sometimes we forget that they're also grieving and suffering as they help their loved ones.

They need our support in any way we can offer it.

This article originally appeared on 11.20.15

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One man's story about loving someone with an incurable disease.

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EMD Serono

Before she was diagnosed with multiple sclerosis, Rosanna loved to dance.

"Rosanna can dance to all kinds of music. Cha-cha, merengue, salsa, bolero, you name it," he laughs. "Now she dances in the car, sitting down. We pull up to a stop sign, and I say, 'Easy, girl!'"

Image via iStock.

Andy and Rosanna have been married for 38 years. Prior to her diagnosis, Rosanna was an executive secretary, the mother of two young boys, an avid chef, and a skilled dancer. Andy traveled often for work but always made time to see his sons' soccer games, jazz concerts, and marching band competitions at home in south Florida. Their family lived an active, busy, happy life. "It was happy moments," says Andy.

Then, two decades into their marriage, Rosanna was diagnosed with multiple sclerosis (MS). She was suddenly forced to contend with an unfamiliar, painful, debilitating disease. And Andy had to figure out how to play his role as her husband, caretaker, and lifeline.

"The past 18 years has been like a small roller coaster," says Andy. "It was very, very tough for both of us."

When Rosanna was diagnosed, neither she nor Andy knew what to expect. She became fatigued, began falling down, and experienced migraines. Together they read articles and went to different doctors. Andy drove them to her various appointments. "To Miami, it's about 65 miles, and she can't drive on the highway due to her MS symptoms. I took over driving to the doctor's office a long time ago," he says.

Eventually Rosanna found a routine that worked for her, and they settled into learning to live with, and trying to reduce, her MS relapses. But Rosanna had to leave her job to apply for disability — an application that would take over seven years to get approved. Andy had to leave his job, too.

"I gave up my job to be with her," Andy says. "I was traveling two, three days a week, and I was leaving her alone. I didn’t like that at all." He took a more stationary job and along with it the challenge of supporting his family and putting his older son through college while learning to help his wife live with MS.

Rosanna and Andy take on the challenges that life brings together. Image via Andy, used with permission.

An often overlooked element to a chronic condition like MS is how difficult it can be for loved ones to learn how to support someone who has it.

It's incredibly important for caregivers to make time to care for themselves — something that many people struggle with because it makes them feel selfish. But it's necessary.

For Andy, self-care comes in the form of his bike. "I've been riding a bicycle for the last 30 years. My relaxing time is riding my 30 miles. It takes my mind away from everything." It's even given him an opportunity to connect with and contribute to the MS community by participating in rides that raise funds for research.

Image via Andy, used with permission.

He and his wife also go to "CHATS," which are live events hosted by MS LifeLines (a patient support service), where they talk to others both in and out of the MS community about their experience living with the disease. "I enjoy it very much because there's MS patients we know and those we don't," Andy says.  

Telling their story helps them connect with the community and make friends who can relate to their experience. In addition to "CHATS," MS LifeLines provides an online resource called My Story, where people affected by MS can share their stories and read the stories of others going through a similar situation.

The #1 key to balancing it all, says Andy, is teamwork.

It can be hard to strike a balance of caring enough and caring too much. "At first, Rosanna was afraid to tell anybody what she had because she didn’t want to worry them," Andy says.

But with time and practice, they've found a balance that works for them. "I care for the house. I help her with the dishes," he says. Rosanna wanted to keep cooking for her husband, but with MS, that isn't always possible. "So I make dinner and she makes lunch," Andy says. "We work together as a team. That's the only way that you can help each other. I help her and she helps me."

At the end of the day, the best way to love someone with MS is by simply being a good partner.

MS causes all sorts of difficulties that fluctuate from day to day. "One day she’s in a bad mood, and I've got to deal with it," says Andy. "But I have bad moods, too. That's marriage, isn’t it?"

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Caring for her grandma revealed an underappreciated task almost all caregivers have to do.

When Miles Taylor was a teenager, she and her little brother moved in with their grandma Betty, who essentially became a single parent at nearly 80 years old.

An untenable family situation prompted the change, which Betty took in stride. It was a move that must have taken some "grit and guts and probably a real fine-tuned sense of humor" on Betty's part, says Taylor.

Taylor is now a sociologist at Florida State University. She says Betty, who died in 2015 at the age of 100, was a huge influence in her life. Betty was resilient, quick-witted, compassionate, and could at times be incredibly stubborn (as the doctor who tried to get Betty to stop eating candy learned). "And she had an unbelievable capacity for love," says Taylor.

Miles Taylor and her grandma Betty. Photos used with permission.

As Betty got older, she started needing some extra help, and Taylor was there to contribute.

"It was small things in the beginning," Taylor says. "She needed help putting up a Christmas tree. Then, as she got a bit older, she needed help with getting groceries delivered." Taylor, her brother, friends, and neighbors all helped out.

Then, in 2011, when Betty was about 96, she fell and broke a bone in her back. Taylor knew that from then on, Betty would need a lot more than just help with the Christmas tree, so she stepped into the role of Betty's full-time caregiver.

In 2015, about 1 in 7 American adults served as caregivers for someone over 50, according to an AARP report.

The numbers are even higher if you count those taking care of other recipients, like adults or children with injuries or disabilities. Many of these caregivers are pretty young as well — about a quarter are under 35.

Although many people feel positively about being caretakers, it can be physically, mentally, and emotionally tough work. In fact, there have been many studies and papers about the stresses of being a caretaker.

Most of these studies have focused on the caregivers' relationships or on the stresses around very personal tasks (such as helping people bathe). But when Taylor stepped into this role, she realized there was another, huge aspect of a caregiver's job — one she had known about but couldn't have predicted how stressful it'd be.

Navigating the health care system blindsided Taylor.

Handling Betty's personal care was one thing, but Taylor was surprised at how much time she had to spend just figuring out the health care system. Even as someone who had time and a bit of inside knowledge, it was really difficult.

For example, Taylor knew if Betty was ever to get mobile again after the fall, she'd need rehab to help with strength and balance. But a snafu with how the hospital had listed Betty on their charts meant her insurance wouldn't cover rehab. It took weeks to fix.

"It was very frustrating," Taylor says. Over and over again, she experienced similar issues.

Though Taylor says she was never disappointed in the care Betty received, many of the various institutions — hospitals, insurance agencies, care services — were fragmented. They didn't communicate, which meant the job of sorting everything out fell to Taylor.

When Taylor talked to other caregivers, many of them felt the same way.

Now Taylor has published a paper she hopes will help reveal this invisible workload.

As she cared for Betty, Taylor found support in her friend and colleague Dr. Amélie Quesnel-Vallée of McGill University in Quebec. Quesnel-Vallée was also caring for an older family member — her mother. And though Quesnel-Vallée lives in Canada, they found a lot of similarities in their experiences.

Together, they wrote a scientific paper informed by their own experiences as caregivers, published in The Gerontologist. They're hoping researchers and policymakers will take notice and maybe even make some long-term changes.

"It's important those caregiving hours and that caregiving stress is recognized," says Taylor.

But they also had a message — not just for health care professionals, but for other caregivers too:

"On the more personal side of things, a message we'd like to send out to caregivers themselves is they're not alone," says Taylor.

The AARP report suggested that most caregivers in the U.S. are stepping into this caregiver-plus-case-worker kind of role. It's important for caregivers to know that although it's often invisible, their work is valuable and valued.

Caregiving is hard, often invisible work. Through sharing stories like this, we can help bring it into the light and give it the attention and credit it deserves.

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A mom of a kid with a disability explains a restroom problem you've maybe never heard of.

Accessibility does not always equal accommodation.

There’s a bathroom secret I think you don’t know about.

And no, this one has nothing to do with transgender people or sex or gender. In fact, it couldn’t be less sexy, which is probably why you haven’t heard about it.

Imagine you’re out and about, maybe at a restaurant with your family or a museum with your kids or a movie with your sweetie. But then you need to use the restroom. Now here’s the tricky part: You’re in a wheelchair.

OK, no biggie. The door is mechanized; the stall is large enough; there’s even room to pivot your chair to the sink. Except ... what if you’re one of the wheelchair users who needs to lay down to take care of business? The fact that a wheelchair user can fit into a bathroom stall doesn’t mean a damn thing if that person can’t maneuver themselves onto the toilet.

Accessibility does not always equal accommodation.

There are about 3.3 million wheelchair users in the U.S.

A third of those folks need help with activities of daily living, one of the most crucial being diapering care.Many wheelchair users also need a changing table and, usually, a caregiver or attendant to get the job done. But, generally, public restroom changing tables only accommodate babies.

You might get lucky with a family restroom — those single-room offerings where, say, a dad can take his toddler daughter. Maybe there’ll be a counter long and wide enough. Of course, that doesn’t solve the problem of getting on that counter. Parents with disabled children often contrive some method that involves going back out to the car or van. That’s what I did until my son got too big, and the awkward transfer from wheelchair to makeshift changing area endangered my back. And that doesn’t even touch on privacy issues or dignity or cleanliness.

Me and my son in a restroom with an actual adult-sized changing table. All photos provided by Carla Christensen.

As a last, very last, very loathed resort, I may have to use that handicap access stall in the public restroom. And that means laying my son on the floor and praying I remembered to tuck some extra mats or pads into his wheelchair backpack as well as a vat of antiseptic gel.

Next time you’re in a public restroom, imagine lying on the floor.

Even if it’s just been cleaned. Aside from the questionable hygiene, how undignified would that be? And not even private — most bathroom stalls are open at the bottom.

While you’re at it, picture me trying to transfer my son from his wheelchair to the floor, bending and contorting to get the job done, and then getting him back up into his chair. I’m getting sweaty just writing about it.

I know what you’re thinking: If this is such a problem, how come I’ve never seen anything like it?

Well, I could say something about the American public’s general squeamishness about necessary functions in the necessary room, but I’ll save that for another article. More to the point, the reason you don’t see us is that we don’t go out. A mom from Wisconsin once wrote to a festival organizer about her family’s difficulties, and she gave me permission to share it:

"Unfortunately, what we are now forced into more often due to my son's age is to go home before the end of the movie, the soccer game, the concert. And he is missing out on what his peers take for granted ... . Families like ours ... don't go out!"

The Wisconsin mom and her family.

My husband and I used divide-and-conquer strategies so our daughters got out to the movies, and a generous aunt took them to Disneyland while I stayed home with my son. But take the family out to dinner? No way. Trip to the beach? Forget about it. There are nature trails with handicap access paths and special spaces for wheelchairs at theaters, but that doesn’t matter if you can’t attend to essential bodily functions.

I don’t care what your gender is or what your body is like or if you have a disability: You should be able to use the bathroom wherever you go.

It’s a basic human right.

If you need to accompany your young child or your elderly parent to the restroom. If you’d like a private place to breastfeed. And especially if you have no other choice for dealing with diapering. You deserve to be able to go to the restroom in peace.

That’s why single-stall bathrooms should be available in every store and every restaurant and every office in America. Single-stall bathrooms are a great way to ensure that everyone who needs to use the restroom can. But special-needs users also need special accommodation: an adult-sized changing table.  

This bathroom is inclusive... except for folks with disabilities.

Now, every time I use a public restroom, whether I’m with my son or not, I scope out the facilities. I’m a mom on a mission.

You’d be amazed how often the single-stall restroom, where it exists, doesn’t have a changing table for anyone larger than a toddler. Or how often the space for the baby changing table is large enough for a bigger table. I’m taking names.

And if you want to help out? There’s a grassroots organization called Changing Spaces, dedicated to literally changing the spaces where wheelchair users can be changed. Find them on Facebook. Start noticing the public restroom facilities and send emails to store and building managers.

Help me be the voice for change.

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