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Independence- ways to help a disabled loved one find theirs


This 4th of July, while many Americans are celebrating the Nation’s independence, others will be working to regain theirs.  For people with disabilities, independence is more than the waving a flag or singing of an anthem, it is the freedom to be and the freedom to do.  When someone has a disability, there are a host of physical and psychological challenges that can interfere with independence.  These aren’t characteristics- they are side-effects of change and adjustment and, arguably, perception. Fortunately, there are ways to overcome the limitations and a good support system is primo.  This is where family and friends can help!

When a newly disabled loved one comes home it may be tough trying to relate.  You may feel that there is nothing in common or that challenges you face are insignificant in comparison, or maybe you simply don’t know how to talk to a person with a disability.  Or you are just trying to take it all in, yourself.  Whatever the reason, a physical or mental disability doesn’t have to take away from the the joy of being around your loved one.  In this article, I hope to lay out some simple ways to help you help your loved one on the journey to independence:

Be Encouraging

Sometimes we need a pat on the back and sometimes we need a cheerleader.  I remember, as a new spinal cord injury patient, the most powerful words my therapists said to me were “You can do it! I believe in you!”  They let me know that it is ok to have hard days because in time I would be able to look back and see how far I’ve come.  By showing that you care through encouragement you are not only providing emotional support but you are also providing motivation.   If you don’t know what kind of encouragement to give or how, don’t worry but don’t be fake, the process of adjustment and grieving is a perfectly normal so just be there for a kind word and helping hand.

Be Supportive

…Especially if it’s your friend’s first time getting out of the house as with a disability.  Going out into public takes self-confidence and your friend or loved one is likely used to doing things on their own. Even if they have had their disability all their life, try not to make a big to-do of it. I get annoyed me when someone I’m with feels that they have to explain to others exactly why things are going smoothly.  You may have all the best intentions by assisting with as much as you can but allow your friend to try things out for themselves. If tempers and frustrations escalate, as they can easily do, take a breather.  You both are ‘new’ to this so take the challenge in stride.

Sometimes, the best thing you can do to show you care is to do or make something that will help make life easier.  It doesn’t have to require a big time commitment or a lot of money but if you have a talent, such a wood or metal working, or you have some free time ask how you can help.  You can do a lot to boost self-esteem and self-suffieciency by allowing your loved one to design their own living space and then help them build it.  It will be a lasting reminder that you care.

Be Accessible

Let’s face it, not everywhere is wheelchair friendly.  It can be very disheartening when anticipating a fun day with friends only to be “helped” up and down steps, be confined to a corner because of obstacles or a crowd, or to have to constantly ask for help.  When planning for a fun day or night, check out where you are going first and make sure it is wheelchair accessible (and friendly) and think about how your friend can get around.  For instance, bowling alleys are a lot of fun and most are accessible.  Many have a bowling ramp for individuals who can’t carry a ball.  And, if you’re planning a wedding or a big family event, ask how you can make it accessible.

At home, try to keep things as clutter-free as possible.  If your friend or loved one uses a wheelchair and likes to visit, invest in a ramp (you can build it out of wood or get a portable one) to make your home more user friendly.  I always love it when my friends are thoughtful enough to provide even a makeshift ramp 🙂  But! If you have lots of stairs, you might want to default to a restaurant or something more single-level.

Be Patient

Be prepared for things to move at a little slower pace for a while as your loved one is getting used to the disability.  Transfers will likely be slow, getting out of the car will take five minutes (or 30), and practically everything will be slower for a while.  Try to contain your agitation because with practice things will get quicker and easier.  In most cases, an individual’s abilities are the worst early on after an injury so it’s best to go with the flow and get an early start.  I once heard this phrase- “Quads run on quad-time: Plus or minus 15 minutes.” It’s become my general excuse for being late but it’s oh so true, disabilities can be unpredictable!

And last but most importantly,

Be YOU!

The best way you can show your loved one that you accept the change in their life is to not let your behavior and feelings toward them change.  It can be challenging because of society’s more negative view toward disabilities but in time and with the right kind of support your loved one’s challenges will become a second thought.  In an interview with the parent of one of our patients, she said, “Most of the time I don’t forget my son has a disability.”

“Time heals all wounds” and in time you will see that your loved one is still the same person they were before and you can help them find themselves again.

Happy Independence Day!  

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A Sibling’s Perspective- part 2


Part 2: Patience

Things that take an able-bodied person 10 minutes to do could take an SCI (a person with a spinal cord injury) two hours.  And that’s if they’re really going at it! I often lost what little patience I had to begin with because my time table was disrupted. I had to wait 10 painstaking minutes for my sister to put on her socks and shoes. First one finger in the sock then two fingers then a toe then inch by inch, tug by tug, the sock finally made it up to the arch of her foot. I fought the urge to just do it for her so we could hurry up and get to school already. Every time I would get her out of the car, I had to wait for her to adjust her body and regain her balance before we could get going. I could go on and on citing situations where I lost my temper just because I didn’t pack an extra supply of patience.

Being an able-bodied person who has to adjust their lifestyle to accommodate a family member with an SCI can be irritating and downright maddening sometimes. Unlike our wheelchair-bound family members who have no choice but to develop patience, it takes a conscious effort on our part to breathe and relax. I don’t have any protocol for how to develop patience (does it even exist?!) but I do have a few thoughts that have helped re-fill my patience tank.

1) It costs you more time to rush and make mistakes. And it’s not worth the injuries.

2) Nothing we have to do is so earth-shatteringly important that it has to be done right this very second. Even “very important” things can wait.

3) Patience is a universal virtue. Once developed, you can use it anywhere and in any situation.

 

Amanda Haddad is a graduate student from the University of Southern California, studying geochemistry and microbiology.  She was a passenger in a car accident 10 years ago when the car she was riding in rolled over in the Arizona desert.  Her sister, the owner of the For Caregivers blog, sustained a spinal cord and traumatic brain injury and their journey as siblings recovering from trauma is one that many families can relate to.

A Sibling’s Perspective


by Amanda Haddad

Part 1: Helplessness

To this day, it is still surreal for me to think of my family’s roll-over accident as an event that actually occurred. The only flashes of memory I have of the incident are dreamlike. I was waking up inside a car fishtailing off the highway then in the next scene of the dream, I was waking up again inside an AirEvac helicopter asking the medic what happened. My first real post-accident memory was learning that my sister was paralyzed and that I could only see her for a few minutes. When I saw that gigantic breathing tube hanging out of her swollen face, I wanted nothing more in the world than to trade places with her and have MY head be the purple basketball with the messy ponytail. It had all been a dream and yet, here was my rambunctious sister, plain as day, transformed into an ICU patient. I felt helpless.

Though my sister has made ENORMOUS progress since that day, the hardest part for me as a family member of an SCI has been and still is, to some degree, helplessness. I see her struggle with simple tasks and wish I could give her her arms and legs back. I can’t do that but I’ve learned over the last 10 years (and am still learning) some of the ways in which I CAN help. Here are some ways I see that family members/friends/nurses/doctors/therapists of SCIs can help the SCI.

1) Listening. In all senses of the word.

2) Actively seeking changes in your surroundings to accommodate the wheelchair. For instance, leaving walkways wide and clear of clutter. Or being a scout for curb cuts in sidewalks and wide aisles in stores.

3) Helping them do things their bodies refuse to do. And, where appropriate, help brainstorm and/or design new ways to accomplish a task.

4) Encouraging them to become independent while at the same time being respectful of the extra energy they have to spend to do everyday tasks.

5) Understanding. There’s no possible way to truly know what it’s like to be in their shoes, but a little bit of understanding goes a long way.

And most important of all,

6) Patience. (This one is so important that it warrants a separate, dedicated entry.)

Even after all these years, I still have helpless moments, like when my sister’s catheter acts up and she has to abandon a social engagement to go clean up. But, on the whole, I don’t feel as helpless today as I did that day in the ICU. I’ve learned over the years what is helpful to my sister and what is not. And every time I engage in task 1), I find yet another way I can help. Besides making my sister’s life easier, helping has also made me feel less and less like I was “in the way” of progress and more like I was part of a team working toward it.