LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

David Salet is now 32. He graduated from Miam-Dade College, then Florida International University – with a degree in public administration and political science.

In Miami, he interned at the County’s Americans with Disabilities Act Office and worked in politics. 

His current work in Montana is largely focused on speechwriting and communications for politicians that are progressive and believe in upholding and expanding the myriad laws and social safety nets that allow people with disabilities to live inclusive, productive, dignified lives.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

“Missoula is very progressive. 

They do a ton of things for people with disabilities. 

Even with the harsh winters, they keep the sidewalks and crosswalks clear. 

You have to clear your sidewalk by early morning and if you don’t, the city cleans it and gives you a ticket.

That makes mobility possible,” she said.

“We are nature people. 

We hike trails all over Missoula and greater Montana,” she said. 

“Some are too bumpy, some are smooth and accessible to all. Glacier National Park has tons of accessible trails and features and it’s only 2.5 hours’ drive from us.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

“With kids, the No. 1 thing you have to do with them is when they get upset about something because they are having a rough time doing it, is showing them there are options, different approaches to getting things done,” she said. 

“Coddling, and I did that for a while, is ignoring the hurdle.”

Two years ago, after much research, Folgueiras and David decided to leave the urban madness and bad air (the city’s humidity and choked traffic exhaust is very bad for David’s respiratory issues and vocal cords) of Miami for Missoula, Montana.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Traveling is big on their fun time list, but as anyone with SCI knows, it is difficult to move to a seat – often with risky assistance from poorly trained airline or ground crew prone to manhandle rather than assist a paraplegic person with care and dignity. 

To this day, the family travels with a manual chair, because airlines are infamous for destroying and even losing expensive, essential power wheelchairs.

“Whomever is disabled, if they don’t have an advocate with a big mouth, they are in trouble,”

Folgueiras said, noting some salty language may slip into her conversation with foolish waiters and other service people who either pretend David is invisible, has the mind of the seven year old or will have his day brightened by being patted on the head and patronized like a pet.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Folgueiras also said that family members must remember that when they become a very hands-on caregiver, they cannot ignore their own disabilities. 

As an epileptic, Folgueiras knew it was essential to maintain her health. 

So she minimized the things that trigger seizures. 

Although stress and sleep deprivation can be aggravators, she found that the focus she put on managing her  career – balanced with David’s recovery/ongoing care – actually reduced her seizure episodes.

 

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

“Mental health is one of the things I feel that everybody in a situation like this needs,”

Folgueiras said, noting that physical adaptations at home and school are obvious, but monitoring a primary caregiver’s mental well-being is just as important. 

You have to have someone to talk this stuff out with.”

“(The parent of a newly-injured child goes through) a lot a suppression. 

You squash down your feelings because you don’t want your child to see you hurting,” she said. 

“My doctors told me I had to get rest. When I left the hospital at night, that killed me.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Folgueiras’ chief advice for the parent of a newly-injured child is to start modifying the family home while the person is in rehab – not waiting till the day they come home. 

She was fortunate that the Brain and Spinal Cord Injury Program helped with putting in a ramp, accessible bathroom fixtures, widening doorways and installing a track on the ceiling to hold a harness that allowed David to move about and into the shower.

David went to Miami-Dade Public Schools with an assistant who attended all of his classes and remains a close friend to this day.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Folgueiras, who added licensed massage therapist to her health care resume, always had respect for the medical field.

But her experience with negativity and ableism hurt her deeply at a time when she was most vulnerable.

“They told me several times he wasn’t going to make it and if he did, he’d be a vegetable that won’t know who I am. 

A female doctor, supposedly top in her field, told me to my face that I need to face the fact that I’ll be bringing home a vegetable,” she said. 

“I’ve worked in the medical field. 

You are frank, but you don’t talk like that. 

You have to have empathy and compassion.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

The hour-plus wait between impact and arrival at a hospital robbed David of the “golden hour,” the precious time to immediately treat brain trauma and spinal cord injury (SCI).

Thankfully, the passenger in the car that hit him was an ICU nurse and a group on a fishing outing nearby happened to be composed of physicians.

“He was life flighted. He had to be revived three times. 

He was in a coma for a month. He was in rehab a couple more months,” Folgueiras said of her precious little boy.

“He had spinal cord bleed. 

He was deprived of oxygen. 

He has respiratory and other issues.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Ivette Folgueiras’ career as a medical assistant – first in geriatrics, then pediatrics – and involvement in Florida’s Brain and Spinal Cord Injury Program exposed her to the caregiving and advocacy roles of family members of people with disabilities.

Her son David’s nearly-fatal accident at age 10 – causing both C-3 spinal cord and brain stem injury – put her into the driver’s seat of dogged advocate and support system.

A bright, football-playing 5th grade Miami boy, David was on a fishing trip with his uncle deep in the Everglades in rural Collier County. 

The boy darted into the road. 

The impact with the vehicle nearly killed him. 

To the Caregivers I’ve Known

FROM THE EARTHBOUND TOMBOY FILES OF HEIDI-JOHNSON-WRIGHT

 

by Heidi Johnson-Wright

 

Being cared for by others over your life should be a reverse bell curve. You start out requiring a lot of help, gradually need less and less, live decades independently, then your needs return toward life’s end.

 

Once upon a time, I was in lock step with this blueprint of how we insist normal life should be. I was an eight-year old who rode a bike and climbed trees, a healthy third-grader who had mastered most personal care chores. Then rheumatoid arthritis fell from the sky like a white-hot shower of napalm. In a matter of months, dressing and grooming and cutting up food became monumental tasks. From then on, I have had to depend on caregivers for many simple and highly personal tasks.

 

I have had many caregivers thus far in life: a few dedicated family members who have done it for free and the vast majority who have been paid for their services. Sometimes family helps out of love and other times – let’s be honest – out of moral obligation. We then assume that the ones who get paid see dollars as their goal when sometimes they also stick around for the personal connection. They develop something of an emotional investment in the client.

 

Much has been studied and written about the burdens of caregiving for disabled offspring or how the sandwich generation are ground down to a nub by their obligations towards both kids and elders. All of it is valid and worthy of discussion. But what about the recipients of care, especially us adults who are supposed to be able to wash our own hair and pare our own nails?

 

When I was a teenager, I felt especially self-conscious. I was less concerned about needing help than I was sensitive to my personal appearance. I passively accepted my gimpdom but felt embarrassed to get naked in front of strangers. 

 

When I started college at 17, I hired my first personal care attendant. I was anxious about the arrangement. Could I depend on her to get me up and ready so I wouldn’t miss my van ride to class? We quickly built a relationship of trust. I soon felt a bond with Lexie, the punk poetess who would be my caregiver and roll model throughout my four years of undergrad.

 

One time, Lexie was stricken with a devastating flu and bout of laryngitis. She was much too sick to work, so I temporarily hired an attendant already employed by another girl in my dorm. The sub was pleasant and punctual and resembled Dick Butkus in bibbed overalls.

 

She’d never heard of Captain Sensible nor seen I Am Curious (Yellow.) I soon developed an irrational dislike for the poor woman though I tried not to show it. I deeply missed Lexie and fretted about her health.

 

Finally, after two weeks, my door swung open one morning.

I thanked God Lexie – Sally Bowles to my Heidi of the Swiss Alps -- had been returned to me in fine fettle.

 

Lexie was always dependable, but other paid caregivers were not. As I got older, I realized I would much rather have an inexperienced attendant who is reliable, personable and shows initiative than an experienced one who is always late or I can’t bond with.

 

Family caregivers can be wonderful because of the memories and private jokes you share. If they love and accept you, all the better. But I have always felt a greater indebtedness to family members than those I pay. That indebtedness can eat at your heart.

 

A loved one can hug me and tell me I’m not a burden, but the truth is, I sometimes feel like one. I love the concept of respite care but I also feel a sense of shame that it’s needed in the first place. Truth is, the simple tasks of my daily existence can weigh down those dear to me, can pull them down into depression and exhaustion. That can be very tough to live with.

 

Perhaps we could take a page from the book of countries who are – gasp! – a tad more democratic socialist. Places where tax dollars fund basic attendant care for folks with disabilities so the need for respite care never arises.

 

Once we accept disability is often a natural and expected part of the human condition, then maybe we can forge a society that cares for all.

 

http://earthboundtomboy.blogspot.com/2016/04/to-caregivers-ive-known.html