Category Archives: Support
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:
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.
…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.
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 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,
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.
I remember the little black and white speckled notepad my mother kept in her purse for years after our car accident. She kept quips, quotes, and tips in it from other parents and medical professionals she met along the way. I didn’t really understand the significance of the notepad until I saw her tear up during a talk about surviving as a family recovering from trauma. For her and many other family members I’ve spoken with, being able to write out what is in your head not only gives you the chance to organize your thoughts but gives you clarity.
For my mother, the note pad was one of the methods she used for coping and keeping her brain straight. The other day, I asked her about the other tools she used in the early days. Here are a few simple and inexpensive things that family caregivers can do to make the most of their brain power.
Keep your notes, concerns, ideas, phone calls, and any changes to services related to the condition in a dedicated notebook (or in a notebook app such as the iPad’s Notepad). The notebook is “dedicated” because its sole purpose is to keep running tabs on the condition. It’s different from a diary because you want to be able to bring it a doctor or refer to when you need to remember when that medication was changed or who you spoke to regarding an insurance claim. It’s your log, your timeline of events, and ultimately, it is your mirror to reflect on how far your family has come.
The Note Pad
My mother kept a note pad in her purse for years after the car accident to keep track of tips, stories, suggestions, new products, tests, inspirational quotes and all the rest of the tidbits of information that flooded in on a daily basis. “It was my way of keeping my head straight. In the beginning, there is so much information coming your way, so many people trying to offer their advice, and things to remember. With the note pad, I could quickly jot down a note so I wouldn’t forget.”
The File Folder
You need some place to keep all of the printed medical stuff- receipts, statements, doctor’s orders, and therapy instructions. If you don’t have time to organize the different pieces, no worries, just make sure to file them. Otherwise, they get mixed up in the junk mail throw-away pile.
Simple and easy record keeping can save you a lot of stress and future challenges by helping you “cover all the bases” and track what you’ve done. All in all, the better organized you are, the more brain power you’ll have to focus on you, your family, and putting the pieces of life back together.
Are you a caregiver, family member, or an individual with a medical condition? How do you keep your brain straight?
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.
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.
Gabrielle Giffords says “I will be back!”
Who can forget that awful day over a year ago when so many lives were changed forever. On January 8, 2011 at a community event in Tucson, Arizona, a gunman opened fire on a crowd of supporters of Congresswoman Gabrielle Giffords. Among the 18 wounded was Giffords, herself, who suffered a devastating shot to the head and was first assumed dead by many news media. Although she survived, Gabby (as she is fondly know by colleagues and constituents) sustained a severe brain injury, the effects of which are still apparent and will likely be felt for the rest of her life.
Last Sunday, Gabby announced that she will be stepping down from Congress in order to focus on her therapies. She has made miraculous progress in her rehabilitation but the reality of brain injury is that the brain, that amazing but delicate organ, needs time to heal.It can withstand many offenses but when a bullet traverses through some of the more crucial areas of higher level functioning, the question becomes more of a matter of “how much” than “how long it will take” a person will recover. In Gabby’s case she is doing phenomenal but there are misconceptions about the rehabilitation of brain injury, from the notion that one goes back to “normal” to “everyone recovers the same from the same type of injury.” Giffords is experiencing what millions of brain injured individuals have experience across the nation.
I can barely remember the Christmas after the car accident. It had been 5 months; right about the time when life slows down enough to feel how everything has changed but is still too foreign to take it all in. I was so new to being paralyzed that the world around me seemed to halt, too, all except for the emotions and the overpowering sense of loss. I was back in high school but was forced to give up many of the things I loved, including parts of my memory (the result of a head injury), my independence, and my sense of self.
That Christmas, my family had been “adopted” by the fire department and neighborhood block watch. They gathered food and supplies for my family and raised money to cover medical expenses. Devastated by the affects of the car accident, we had little energy or money to focus on anything but just being thankful that we were still a family. By far, the first year was the hardest.
We got through it, though. Through these ten years, we’ve learned that still having each other means so much more than “surviving”. It means that we have a shoulder to cry on when things get tough, a hand to lift us up, and arms to give us that much needed hug of encouragement. Every Christmas, especially, we remember the gifts of friends and family, and of the strangers who made sure that we got back on our feet, even if we might not be able to stand, literally, on them.
This Christmas will be the first Christmas in these new shoes for at least 2 families I know. Statistically, 12,000 individuals across the nation will be “celebrating” the holidays from a seated position for the first time. Some will walk again, many wont but all will feel what many of us veteran SCIs have felt- The weight of the first year. If I have one gift I can give to those 12,000 families whose lives have changed this year, it is the knowledge that things do get better. We may not be able to put a bandaid on and heal the past but we can work towards a brighter future. And for the friends and extended families of these individuals and families, please give them a little bit more encouragement in this trying time. Your support will be felt exponentially!
Ten years later, we are a stronger family and stronger individuals than we have ever been. I am a pretty independent quad; my parents are both going strong; and my sister, the world traveler, well, I hear from her every once in a while (when she’s not on a ship, exploring the ocean floor 🙂 ).
“Sooner or later life breaks us all, but with courage, hope and the support of people who care, many become stronger in the broken places.”
How are you today?
No, really, how are YOU today? If you are sick, tired, or achy you’re more likely to slap me than answer the question. If you’re stressed or in an emotionally tough situation, you might have noticed these symptoms getting worse. Your body and mind are as connected as your fingers to your hands, but it is easy to forget how integrated they are. If you’re feeling down, your body feels it; if you’re rested, you’re more likely to be cheerful, et cetera, et cetera.
Every decision we make and every situation we come across affects us. It just makes sense. But we can do little things to help that part of our mood that we can control. Afterall, who doesn’t like feeling at their best?
More than a car, our bodies are our only truly reliable form of transportation and just as an unleaded car does not run well on diesel, our bodies do not run well on sugar, starches, and fat. This article titled, “Taking Baby Steps Can Help You As an Adult, Too” talks about taking baby steps to integrate the things that help bodies feel their best.
Yes, we all grew up listening to the health teacher at school telling us to eat our fruits and veggies and to get plenty of sleep but how well did we pay attention? The 2010 Health report from the CDC suggest not very well. I learned first hand not too long ago how important it is to keep everything working as it should.
I am not trying to preach- I know these things are true from my own personal experience. About a month ago, I was hit with a bad upper respiratory infection, borderline pneumonia. At the time, I was just starting a new job, dealing with unreliable childcare, living on coffee and doughnuts, not getting enough sleep, and certainly not exercising.
Stress + Bad habits = Sickness
Simply put, after about a month of constant stressors, my body had had enough. I had done practically everything I could have done to set myself up to fall. And I did. Not only was I down for the count from the respiratory infection but I also had a gnarly UTI, my whole body was out of whack, I had gained weight and I felt depressed and disorganized.
It was then that I really began to pay attention to how much everything affects everything else. My body only works as well as I treat it. Ever since, health has been on my mind- not as a pretentious healthnut but as someone whose work, life, and family are important to her. When I was sick and feeling depressed, my work suffered, I missed out on happy moments, and most of all, I could not be the wife and mother I wanted to be.
It’s In Your Hands
We may not always be able to control the events of the day or the many troubles that plague our minds but we can make sure they do not get worse by making simple decisions about how we keep our bodies fueled and working properly. We are not the only one’s who have taken on the issue of healthy living but navigating the way to a healthy lifestyle can be daunting.
Fortunately, there are articles on the web that can help. I did a bit of research before writing this article and compiled a list of publications that are clear, relevant, and interesting (at least to me 😛 ). Here they are:
Dietary fiber: Essential for a healthy diet <—-Definitely read this one!
13 Healthy Habits to Improve Your Life <—- Another good one. From WebMD
Mind and Body <—- This totally ties in to my experience!
Health & Yoga for the Rest of Us
From Dr. Glen Johnson, Clinical Neuropsychologist and author of The TBI Guide, this article gives valuable insight into the world of traumatic brain injury
EMOTIONAL STAGES OF RECOVERY
We are all different. We all have different family situations, different jobs, different strengths, and different weaknesses. Despite all these differences, there are a number of very common emotional stages that people with a head injury go through. This is based upon my own experience treating patients, but many investigators note similar findings.
Confusion and Agitation
The first phase that I see people going through is a confusion/agitation phase. This can last minutes or it can last for months. I’ve had people get in a car accident and be somewhat dazed for a few minutes, but then direct traffic around their car. Others had been brought into the hospital in a coma requiring intensive medical efforts. When they wake up, they may go through the confusion/agitation phase. In the hospital setting, this is very difficult for family members. Someone who is very meek and mild, for example, can be physically aggressive. They may punch the nurses, or swear and curse at family members. It’s very frightening for family members, and it feels like it is going to last forever. For 99% of the patients that I’ve worked with, this confusion/agitation phase goes away. It may take a while, but people eventually come out of it.
Read the rest of this entry
Loss of a friend, an ability, a treasured item is tough but we all get through it one way or another. When you’re working with someone who has just been through a traumatic event such as a catastrophic injury, you may notice that they seem a bit “off.” This may not be a sign of their character- they are likely going through what Dr. Elisabeth Kübler-Ross calls the 5 Stages of Grieving. Although the video above is a cute representation of these stages, the actual affect of grief and mourning is often more complicated and intense.
This article is among the many you can find to learn more about the Stages of Grief. It adds two more stages that I think are just as important. If you are working with a patient or family that seems difficult, depressed, or just out of sorts, this article will help you see things from their perspective. It was borrowed with thanks from www.recover-from-grief.com