Someone recently told me these kind words, “You inspire me.” I looked in the mirror feeling anything but inspiring.
I then recalled a recent memory. A few weeks before I was participating in a yoga class where I was reminded to bring deeper awareness to myself. The teacher prompted us to slow down and observe what was happening in our minds and bodies. So I did. I sat on my mat listening to the sound of my own thoughts. And I saw something clearly. As strange as this might sound a word appeared to me in large, bold letters surrounded by fiery flames.
The word was OVERWHELMED.
The second I saw the word I also felt the word within. My chest filled with an unfamiliar and annoying fluttering as if a million butterflies had been released in the space above my rapidly beating heart. I understood myself to be exceedingly anxious and physically worried. My body held the sensation that comes when you know someone is about to deliver impactful or extremely important news. This was not a positive sensation. It wasn’t the same as fear, but it was similar.
I knew I was in a safe space in the studio. I understood this to be an emotional response. It was something I could address later. So I continued the practice.
Over the next few days, I shared my observances with some trusted friends. I admitted feeling overwhelmed. I started to focus on exploring areas in which I might be able to pull back, or lighten my load. Then another thought occurred. It was the question of why it is that I keep so busy? Is my busyness intentional? Is this the natural path of being a caregiver who works full-time, teaches yoga part time and speaks, writes and advocates about traumatic brain injury? Or was this a mixture of all of these things?
Being busy and doing important things is not bad, but experiencing burnout or feeling as if your mind never shuts off is unhealthy. Especially for a caregiver.
This goes back to the concept of honoring our survivor, our family and our friendships while also remembering to honor another important person…our self. Practicing self-care often gets pushed aside. And that is dangerous.
While half asleep on on Sunday around a week later I began running through what the upcoming week was going to look like. My mind went from my 9-5 job and expectations, back to my home and those expectations, and then to the extra-curricular activities and those expectations. My head spun with lists, dates and information. Organizing my thoughts felt difficult. I was keenly aware of the busyness that would continue over the next few days and weeks.
As I considered my thoughts carefully during my waking hours I had to explore ways to take better care of myself. I listed practical solutions that seemed to ease some of the pressure I was experiencing.
Taking a good look at my calendar. Were there one or two things I could eliminate or postpone? Could I admit to myself perhaps I had overscheduled? In the future can I be more mindful of the things I commit to?
Exploring the idea of hiring a companion to spend a few hours with Taylor on the weekends, giving us some free time. This service is not inexpensive, but giving both my husband and I a break when we are NOT at work is important.
Making sure I continue the areas of self-care that are working. A big one for me is yoga. I must make sure to schedule not only teaching time, but also times when I can go to class. This is a priority, because I know the results yield peace of mind.
I was thinking about the last time I had a getaway. I think it was May of 2018. I need to work in events and times away that I can look forward to. Having to look forward to is important. It is sort of like trusting a long winter will be followed by a bright spring. This one is harder to access, but something I am working on.
This may seem strange but I captured a photo of myself in the midst of a sad and overwhelmed moment. I remember a teaching that has really come to life for me. And it is this, “I may feel broken, but I am whole.” This doesn’t mean I don’t give space for my feelings. The photo is a reminder of how hard things can get and feel, and to work to create more spaces of happiness and joy, than the deep sadness and overwhelming emotions that come with caregiving. The photo is a tangible reminder to throw myself a life preserver, before I start to feel as if I am drowning.
Finally, these seem kind of obvious but when we are worn down sometimes we forget to eat healthy, rest well, exercise, step in the sunshine and step away from electronics daily. Going back to the basics of self-care is often the best place to start.
I want to remind you our feelings as caregivers, are not “good” or “bad”. They are simply our feelings. We do not need to have guilt about feeling sad, overwhelmed, broken, stressed out or needing some space. We can acknowledge our emotions and if they feel painful to us we can ask how to work on easing our burden, and giving ourselves opportunities to feel better. Labels for emotions add more to the caregiving plate. This is all a work in progress, I am a work in progress (much like my survivor).
If you are a caregiver reading this, I want to remind you…you are not alone. On your worst days. At your hardest moments. On your best days. When you are a shining star. You have a family of other caregivers who understand and care about you.
The video introduces Pepper, a humanoid robot, which can provide social, physical, and emotional support for older adults and people with disabilities. In the video, Pepper teaches a person how to do a fist bump, reads a story, and plays a game. Socially assistive robots like Pepper may offer an innovative approach for significantly increasing the capabilities and social participation of people with disabilities across environments of their choice.
Wireless RERC researcher, John Bricout, PhD, who is the director of the School of Social Work at the University of Minnesota, Twin Cities (UMN), and Dr. Julienne A. Greer and collaborators at the University of Texas at Arlington (UTA), Emotional Robotics Living Lab, are investigating the socially assistive capabilities of “Pepper,” a versatile 4-foot tall humanoid robot. Pepper can provide social, physical and emotional support for older adults and people with disabilities. Bricout notes “the broad aim of our work is to extend the capabilities and quality of life of older adults and people with disabilities, leveraged by socially assistive robotics as partners in learning and action.”
To investigate the efficacy of telehealth-based and in-person social communication skills training (TBIconneCT) for people with moderate to severe traumatic brain injury (TBI) based on outcomes reported by the survivor and a close communication partner.
Australia. Two telehealth dyads were located outside Australia.
Adults (n = 51) at least 6 months after moderate-severe TBI with social communication skills deficits, and their usual communication partners (family members, friends, or paid carers).
Partially randomized controlled trial, with a telehealth intervention group, in-person intervention group, and a historical control group.
La Trobe Communication Questionnaire (LCQ) (total score, and number of items with perceived positive change). Both self- and other-reports.
Trained participants had significantly more items with perceived positive change than did historical controls. A medium effect size in the sample was observed for improvements in total score reported by trained communication partners after treatment. Comparisons between telehealth and in-person groups found medium to large effect sizes in the sample, favoring the telehealth group on some LCQ variables.
Whether delivered via telehealth or in-person, social communication skills training led to perceived positive change in communication skills. It was unexpected that outcomes for the telehealth group were better than for the in-person group on some variables.
TRAINING COMMUNICATION PARTNERS is best practice in providing intervention for cognitive communication impairments after traumatic brain injury (TBI).1 Providing communication partners with skills to enable effective conversations creates a more positive daily communication environment for people with a TBI. Training focuses on addressing negative patterns that communication partners may use in conversations with people with TBI, such as failing to follow up on the person’s contributions, not giving enough information to support the person’s comprehension, using questions designed to test the person’s memory rather than asking for meaningful information, and querying the person’s accuracy.2 The aim of training is to facilitate collaborative interactions between people with TBI and communication partners.3 The TBI communication partner training program with the highest level of evidence is TBI Express.4 This program has been shown to improve the quality of conversations5,6 and self-reported communication outcomes.7
TBI Express is an intensive program, involving 35 hours of intervention consisting of a combination of group sessions and dyad sessions (attended by both the person with TBI and their communication partner). This makes it difficult to implement TBI Express in full, given limitations on clinician time.8 Availability of families is a further barrier to accessing training, given factors of distance from rehabilitation services9 and competing time demands.10 The TBIconneCT program is a reduced-intensity version of TBI Express involving 15 hours of intervention over 10 sessions with the option for in-person or telehealth delivery. Each session involves the person with TBI and their communication partner attending together. TBIconneCT has shown positive outcomes using telehealth delivery with 2 participants in a single case experimental design study.11 To further investigate the effectiveness of TBIconneCT, a clinical trial was conducted. This trial had 3 arms: in-person TBIconneCT training, telehealth TBIconneCT training, and a historical control group.
The current study reports on a secondary outcome measure from this previously reported trial of TBIconneCT.12 The previous report addressed the primary outcome measure of conversational quality using the Adapted Measure of Support in Conversation (Reveal Competence scale)13 based on ratings from a blinded assessor. The secondary outcome measure reported in the current study evaluated the impact of the training on communication problems from the perspectives of the most important stakeholders: people with TBI and their usual communication partners.14 The La Trobe Communication Questionnaire (LCQ)15 is the secondary measure analyzed in the current article. Although level of insight will affect participants’ reporting, the LCQ has been shown to be a valuable tool that is sensitive to change, and it has been recommended as a supplemental outcome measure in TBI research.16
The research questions for the current study were:
(1) Is TBIconneCT training more efficacious than no training in improving LCQ outcomes as rated by people with TBI and their usual communication partners?
For the purposes of this question, the group of trained participants (formed by combining in-person and telehealth participants into a single group) was compared with the group of historical control participants.
(2) What is the magnitude of any difference in LCQ outcomes between telehealth and in-person training?
The sample size of this trial was not large enough for a noninferiority design. This question is therefore exploratory in nature.[…]
Background and Purpose- Stroke disability is a major health burden in rural China where rehabilitation services are inadequate. We aimed to determine the effectiveness of a novel nurse-led, caregiver-delivered model of stroke rehabilitation in rural China.
Methods- A multicenter prospective, randomized open, blinded outcome assessed, controlled trial was conducted in 3 rural county hospitals in China: Zhangwu, Liaoning Province (Northeast); Qingtongxia, Ningxia Hui Autonomous Region (Northwest); and Dianjiang, Chongqing Municipality (Southwest). Adult patients (age 18-79 years) with residual disability (Barthel Index score ≤80/100) after a recent acute stroke were randomized to a new service model or usual care. The new intervention was multifaceted and was based on a task-shifting / training-the-trainers model, supported by a custom-designed smartphone application, where patients and caregivers received evidence-based in-hospital education and stroke rehabilitation training (focus on mobility, self-care, and toileting), delivered by trained nurses before hospital discharge, and 3 postdischarge support telephone calls. Outcome assessments were undertaken before hospital discharge and at 3 and 6 months. Primary outcome was physical functioning (Barthel Index scores) at 6 months, assessed by research staff blind to treatment allocation, adjusted for baseline covariates in an intention-to-treat analysis. Secondary outcomes included measures of mobility, health-related quality of life, mood, and caregiver burden. The study included a process evaluation that assessed intervention fidelity.
Results- From November 2014 to December 2016, 246 stroke patients were randomized to intervention (n=118) or control (n=128) groups. There was no statistically significant difference in adjusted 6-month Barthel Index scores between groups (70.1 versus 74.1, mean difference, -4.0 [95% CI, -10.0 to 2.9]), nor any differences across the other outcome measures. Process evaluation interviews revealed that the intervention was desirable and positively accepted by nurses, caregivers, and patients but was considered too complex despite efforts to simplify materials for the rural context. Key strategies identified for future studies included the use of community health workers, smartphone application enhancement, and simpler and more frequent training for nurses, caregivers, and patients.
Conclusions- A novel nurse-led, digital supported, caregiver-delivered stroke rehabilitation program did not improve patient physical functioning after stroke in rural China. Further stroke rehabilitation research suitable for resource-poor settings is required, with several components being suggested through stakeholder interviews in our study. Clinical Trial Registration- URL: https://www.clinicaltrials.gov . Unique identifier: NCT02247921.
Like millions of people around the world right now, I am extremely concerned about COVID-19 — the new-to-humans viral strain in the coronavirus family that affects the lungs and respiratory system. As someone at high risk due to my physical disability, cerebral palsy, I am afraid of being infected, and I worry about my parents and other older relatives too. But there is something I fear more. I am terrified of dying from COVID-19 not because my death is inevitable, but because my life may not be viewed as worth saving.
“That would never happen,” you might think. Surely people with disabilities have some kind of protection under the law against being denied life-saving treatment? Unfortunately, at this very moment, states are putting triage policies in place in case there is a shortage of ventilators and other equipment that would allow doctors to ration and deny care based factors including the patient’s age and medical history.
Our country is at risk of mirroring Italy, where such decisions are already being made and people with disabilities and elders dying when they might have lived if they had access to a ventilator. On March 24, New York Governor Andrew Cuomo said in a news conference that his state has 7,000 ventilators but needs 30,000 more. “You pick the 26,000 people who are going to die because you only sent 400 ventilators,” he told the Federal Emergency Management Agency.
States already have pandemic resource allocation policies in place that deprioritize disabled lives. In Washington state, rationing guidance distributed by the Department of Health includes a provision that triage teams can transfer COVID-19 hospital patients with “loss of reserves in energy, physical ability, cognition and general health” to outpatient or palliative care. This describes the majority of people with physical and/or intellectual disabilities, or could be interpreted as applying to us. In Alabama’s policy from 2010, people with severe or profound intellectual disabilities are listed as “unlikely candidates for ventilator support.” Tennessee’s 2016 protocol called for people with “advanced untreatable neuromuscular disease” such as multiple sclerosis and spinal muscular atrophy to be excluded from critical care. And in a particularly disturbing set of guidelines from 2015, the New York State Department of Health said hospitals could take away ventilators owned by people who require them to live if they check into the hospital during a scarce resource situation.
Would you go to the hospital if you knew they could steal the ventilator you use to breathe every day, effectively murdering you? How would you feel knowing your son with an intellectual disability is an “unlikely candidate” for a ventilator if he gets sick? How would you feel knowing that if your relatives who spent spring break on the beach brought the disease back to your small town, you might be denied life-saving treatment because you have a neurological condition and use a wheelchair? These are the reasons people like me aren’t sleeping at night. (Really. It’s almost 5 a.m. as I write this.)
As a person with cerebral palsy, I fear I will be judged based on my use of a wheelchair and limited mobility in my arms and legs. While I do not believe a person’s value depends on how much they contribute to society economically, far too many others do, including some doctors. I fear a doctor may view me as “useless,” without knowing about my job or travel blogging or advocacy. And I’m even more afraid for other people with disabilities — those who use ventilators or BiPAP daily, who can’t work at all because of their health, who are isolated in nursing homes, who live in extreme poverty, who are people of color or otherwise marginalized in multiple ways. They matter too. We all deserve equal access to care, regardless of our disabilities.
These rationing policies are a symptom of the deep ableism ingrained in the medical profession. People with disabilities are often seen as less worthy of care, less valuable as human beings. Of course, many individual doctors and nurses on the front lines of this pandemic are heroes, working for days at a time without proper protective equipment to save the lives of all their patients, regardless of disability, chronic illness or age. But if the system itself does not protect people with disabilities and chronic illnesses, some of us will pay the ultimate price at the hands of those who do not see our value.
I know tens of thousands of other people with disabilities and chronic illnesses are having the same fears right now. What can we do? The situation feels almost hopeless, but it’s not. First, there is some good news — disability rights organizations are mounting legal challenges against these rationing policies, arguing that they violate the Americans With Disabilities Act and other federal laws. Disability Rights Washington, The Arc of the United States, and Self Advocates in Leadership have filed a complaint with the U.S. Department of Health and Human Services Office for Civil Rights about Washington’s discriminatory ventilator allocation policies. Hopefully, action will be taken before lives are needlessly lost.
If you or someone you care about is at risk of death due to discriminatory rationing policies, the Disability Demands website makes it easy to tweet about this issue and others affecting people with disabilities during the pandemic. You can also contact elected officials in your state about your concerns. Ask them to issue guidance prohibiting discrimination based on disability when allocating treatment resources for the coronavirus. Research the triage guidelines for your state so you can point out specific problems and also be prepared to advocate in case you or a loved one becomes ill.
Take the time right now to write down the types of care you would or would not want to receive if you must be hospitalized due to COVID-19. Write something that is clear and factual, but that also humanizes you, so it will be harder for doctors to deny the care you need. If we make it clear, in writing, that we want to live, but they allow us to die when we could’ve been saved, in the long run, society can be held responsible for this preventable tragedy. I feel so strongly about this, I have decided to share what I want doctors to know about me. If I end up in the hospital and unable to speak for myself, please make sure they read it. And please write your own, and share it below if you wish.
My name is Karin Willison. I have cerebral palsy and use a power wheelchair, but I am otherwise fairly healthy. If I must be hospitalized due to COVID-19, I want all necessary measures to be taken to save me, including non-invasive ventilation or ventilation with intubation.
I am a graduate of Stanford University and also have a master’s degree. I live in my own home and I work as an editor and writer at The Mighty, a site for people with health conditions to share our experiences. I love being part of this community and advocating for others. In my spare time, I road trip around the country and blog about traveling with a disability. I have a loving father and stepmother, many loyal friends and four beautiful dogs.
I am a human being. I have value. I am not expendable, and I will fight with everything I have to survive the coronavirus and any other health challenge that may be thrown my way. Do NOT judge me as less worthy of a ventilator or other treatment because I use a wheelchair. I will not sign a DNR, because I want to live. I have a fulfilling life and I’ve got lots more living to do. So please advocate for me, give me the care I need, and I will do whatever it takes to win the battle for my life.
I refuse to be silent when the lives of so many people in my community are at risk. Please join me in speaking out against discriminatory rationing so we can stop these policies before lives are lost.
Concerned about coronavirus? Stay safe using the tips from these articles:
It’s a seemingly simple goal, but for Jodi and Cheryl Graham, it’s been nearly 14 years in the making.
This summer, Jodi, 38, hopes to walk one of her friends down the aisle at his wedding. In some ways, it will be the culmination of countless hours spent with physiotherapists, speech pathologists and eye specialists after a 2006 car crash left her in a deep coma with a traumatic brain injury.
In another way, it’s no culmination at all: once the big day’s over, Jodi will still need around-the-clock care, mostly provided by her mother, Cheryl, and their close-knit network of health-care professionals, friends and family.
It’s a reality that hundreds of caregivers face in Ontario each day — and for Jodi’s parents, it’s complicated by the knowledge that their daughter will likely outlive them.
“There’s no end in sight [to the help Jodi needs], which is hard. It’s a nightmare,” said Cheryl, 61.
“It’s hard to sit here and say, ‘This is going to be the rest of my life, trying to help Jodi get her life back. And there are no other options.”
The night of the crash
It was a Thursday night in 2006 when their lives were irrevocably altered.
An avid athlete, Jodi was on her way to soccer practice in south Ottawa when the vehicle she was riding in was T-boned by an SUV. The SUV slammed into the passenger door, right where Jodi was sitting, with enough force to push it in by more than half a metre.
It took 25 minutes for firefighters to free Jodi, then 24 years old. She had glass shards in her face and back, a broken collarbone and, most distressing, severe brain bleeding.
The crash was so violent, Cheryl said, that her daughter essentially suffered the adult version of “shaken baby syndrome.” It left her in a vegetative state, and for a time no one knew if she’d ever emerge.
Eight weeks after the crash, Jodi came home. Her recovery was slow: a foot twitch here, a hand movement there. For five years, she needed a feeding tube to eat.
“I can remember the first few years — I don’t think Cheryl ever slept the full night because she was always on the alert for a noise from Jodi’s room,” said Wendy Byrne, a longtime family friend.
The brain injury damaged Jodi’s eyesight and left her mostly unable to speak, so the family communicated with her by writing large messages on a white board. Insurance money helped pay for modifications to the family home, including a custom-designed bathroom, lower kitchen counters and a more accessible backyard deck.
It also made it easier for Cheryl to quit her job with the federal government and provide Jodi with full-time care.
“She’s made herself do it for Jodi,” Byrne said. “There’s so many pressures. I don’t know how she does it. I really don’t.”
Emotional toll ‘heavier and heavier’
Now, nearly 14 years after the crash, Jodi has progressed to the point where she can communicate with her family using sign language, as well as touch-screen technology that lets her send text messages and emails, and play music.
Her family says she’s slowly relearning how to walk, getting up from her wheelchair a few times each day, while also gradually figuring out how to form words again.
But there’s an increasingly pressing concern: what Jodi’s future will hold when her family’s no longer physically able to provide her current level of support.
Six years ago, Cheryl’s husband, Raymond, also 61, had triple bypass surgery after suffering a heart attack. While he and the couple’s other two adult children pitch in, Cheryl has become Jodi’s primary caregiver.
Cheryl said she’s been getting sick more than she used to, and as the months go on, it’s been getting more difficult to get Jodi in and out of her chair.
Then there’s the emotional toll, which comes with its own weight.
Caregiver burnout is a real issue. And we hear that time and again.– Amy Coupal, Ontario Caregiver Organization
“It gets heavier and heavier as the years go on. And you see everyone else — their lives are moving forward,” Cheryl said.
“There’s so many little triggers, too. Now she’s skiing, I take her skiing. And when I go into that chalet, I think of her before [the crash]. You lose a lot. It just gets more emotional, it does, as the years go on.”
According to a 2019 study published by the Ontario Caregiver Organization (OCO) and health policy think-tank The Change Foundation, more than half of caregivers admit feeling overwhelmed by their responsibilities.
Slightly more than half of the 800-plus caregivers who took part in the study also said they felt anxious or worried, while more than 40 per cent struggled with feelings of frustration.
“Caregiver burnout is a real issue. And we hear that time and again,” said Amy Coupal, OCO’s chief executive officer.
To address that, OCO is preparing to launch a support network that connects stressed-out caregivers with others who are “walking their walk,” Coupal said.
Since last November, they’ve also operated a toll-free support line.
“Often caregivers are not getting a lot of sleep. They’re not looking after their own diets. They’re definitely not exercising. They’re really not doing the things that we all need to do to stay healthy,” said Jacquie Levy, the co-owner of Action Potential Rehabilitation in Ottawa, and part of Jodi’s care team for more than a decade.
“Caregivers themselves get ill, because caregiving is such a difficult job. And so [while] we’re busy worrying about our patients, we have to make sure as therapists we look up and see the caregivers and their needs, too.”
As for parents facing the uncertainty of what will happen to their child after they’re gone, Coupal said it’s important to begin talking about those plans sooner rather than later.
That’s partly why a foundation set up in Jodi’s name has pivoted from simply raising awareness to bringing in money for more residential housing.
The shortage of targeted residential care in Ontario has been a pressing concern for families of brain injury victims, with some telling CBC their loved ones face waits of a decade or more before a bed opens up.
“It’s not if we’re going to die — we’re going to die,” Cheryl said. “So when that time comes, [the concern is] there is no place where somebody like Jodi would fit in.”
It’s Cheryl’s firm belief that had she not left her job to care for Jodi, her daughter would have ended up in one of two places: a long-term care home without proper support, or — due to anger issues exacerbated by her injuries — a locked psychiatric ward.
The family’s dream is to open homes where residents have individual units, similar to her daughter’s current setup, with communal living and cooking spaces, exercise and meeting rooms, plus access to 24-hour-a-day care.
The fundraising is still in the early stages, but Cheryl said they won’t give up.
Nor, she added, will Jodi.
“We recognize every little baby step she takes. And as long as she stays motivated, well, we’ll help her as much as we can.”
Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners.
Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis.
Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.
Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.
Survival rates of people with acquired brain injury (PwABI) have increased in the last decades due to the improvement of acute medical care (1,2). Living with brain injury, many experience problems in the longer-term problems, which are often primarily psychosocial in nature (3–8). They include difficulties with interpersonal relationships, work, leisure activities, personality changes, behavioral problems, cognitive deficits and emotional problems (1,6,9,10). New difficulties may even emerge in the long term due to changing circumstances (6,11), for example, when one loses their caregiver and loses support or when one becomes a grandparent but experiences difficulties with caring for their grandchild. Long-term consequences of stroke not only affect the autonomy and well-being of people with brain injury but also impacts family members, specifically partners, who usually fulfill caregiver roles after the brain injury of their loved one (12,13).
In the Netherlands, different forms of care and support for longer-term problems are available and provided by several disciplines, such as psychologists, medical doctors, social workers and physiotherapists. However, there seems to be a mismatch between the available services and the actual day-to-day needs of PwABI and their families in the long term (14). Unmet needs for PwABI as reported in the literature involve understanding the injury, improving emotional difficulties and stress, activities of daily living, communication and finding employment (6,15–18). In addition, PwABI have difficulty finding and accessing services to support them with these issues (16–19). Partners may have needs in direct relation to the problems of the PwABI, such as coping with behavioral and emotional issues, but they also have needs of their own, including respite from caregiving and emotional and social support (13,15,18).
Many studies on needs covered a time span limited to the first few years after the injury (17,20–22), but there is limited research on longer-term needs of PwABI and their partners residing in the community. Studies on longer-term problems are of a less recent date (15,19). Organization of care is subject to continuous change, with an increasing importance being placed on the perspective of the service users. According to the 2018–2030 Action Plan for Stroke (23), more research is necessary to elucidate the needs of patients and carers in order to guide current innovations in the provision and organization of care services. Therefore, the current study aims to complement the existing literature by qualitatively exploring the perceived long-term needs both of PwABI and of their partners. In this study, discussions on care needs were embedded within topics of living with brain injury or with a partner with brain injury to elucidate day-to-day needs and corresponding health-care needs.[…]
Living with a brain injury presents a wide range of challenges, but one of the most difficult things for many survivors is the lack of understanding from the people around them.
Because of this, people with a brain injury often face comments from well-meaning family members, friends and strangers that only add to the frustration of living with a complex and often invisible condition.
To help address the problem, we asked our members to share their experiences of this and, judging by the responses we received, it’s clear this is an issue many people face! Here’s the top ten list of things not to say to someone living with a brain injury…
I know what you mean…I’ve got a terrible memory too!
For people who don’t have a brain injury, it can be difficult to imagine the reality of living with a memory problem. After all, we all forget things, but an injury to the brain can stop memories being stored and/or retrieved, meaning people genuinely can’t remember. Being forgetful and having memory problems as a result of brain injury are worlds apart!
Despite the best intentions, saying things like ‘I have a terrible memory too’ risks showing a lack of understanding and can come across as patronising and offensive.
But you don’t look disabled…
Brain injury is often referred to as ‘the hidden disability’ because the cognitive, emotional and behavioural effects can still be present long after any physical injuries have healed.
Don’t assume that just because someone looks fine on the outside, they’re not experiencing long-term effects. Comments such as: ‘It doesn’t look like there’s anything wrong with you’ and ‘But you’re better now, aren’t you?’ are unlikely to help!
Move on and stop dwelling on what happened.
One to avoid at all costs! The effects of a brain injury can last for weeks, months, years, or even a lifetime. Improvements may happen through the natural healing process, rehabilitation, hard work or a combination of these, but a person can’t simply decide to ‘get better’ and move on.
Encouragement and support are the best ways you can help people maximise their recovery after brain injury.
You should be back to normal by now.
Two big problems with this one!
Assessing the effects and likely outcomes of a brain injury challenges even the most experienced doctors, so receiving this advice is likely to result in an angry response. Yes, the injury may have occurred ‘a while ago’, but the recovery process is different for everyone and for some people the effects of a brain injury may last a lifetime.
At the same time, the word ‘normal’ can inadvertently cause offence. What is normal? Suggesting a person is not ‘normal’ again could lead to feelings that they are somehow inferior.
For someone living with a long-term condition, that’s not nice to hear!
You’re tired? At your age?!
A surprising number of people experience comments along these lines. Fatigue is a very real and very debilitating effect of a brain injury, but because it’s often almost completely invisible, it’s perhaps understandable that people don’t immediately pick up on the difficulties it can cause.
Living with fatigue is very different to the normal feeling of tiredness we all experience at the end of a busy day. It requires careful management and the support and understanding of friends, family and colleagues.
It’s all in your mind!
A brain injury does affect the mind, but unfortunately not in a way that means a person can just decide to get better. Damage to the brain cannot be repaired, and any recovery is a result of the brain adapting to change and finding new ways to work.
This isn’t something that can be controlled by simple conscious thought so there’s little more frustrating for a person with a brain injury than being told to ‘snap out of it’!
Chin up – there’s always someone worse off.
This common line is certainly well-meaning, with a clear intention to make the person with a brain injury feel better about their situation and encourage positive thinking.
But when dealing with everyday fatigue, memory problems, difficulty concentrating or anything else from the long list of brain injury symptoms, it doesn’t always help to know that some people are dealing with worse.
Instead of saying ‘It could’ve been worse’, a better approach might be simply to acknowledge their difficulties, offering help if it’s needed.
Are you sure you should be doing that?
An essential part of the rehabilitation process is relearning lost skills by pushing yourself to do challenging tasks. It’s often better to give things a go than simply accept defeat, so having your ability judged by someone else can be extremely frustrating. It’s great to offer help and support in case the person with a brain injury can’t manage a task, but tread carefully when judging ability.
One of the key aims of Headway is to help people regain as much independence as possible. Brain injury survivors don’t want people to do everything for them – they want help to be able to do things themselves.
I know someone who had a brain injury and they’re fine now.
This comes down to something many people don’t understand – no two brain injuries are the same! Even two people with very similar injuries may experience totally different effects, and while it can be a motivation to hear of other people making good progress, it certainly isn’t helpful to be judged for not recovering as quickly as them.
But you were able to do that yesterday…
People who say this don’t realise the fluctuating nature of a brain injury, which is often down to fatigue. In some cases it can be because they did a task yesterday that they can’t today.
Pushing too hard after a brain injury can cause difficulties for hours or even days afterwards, and this is a time when support and understanding is needed more than ever.
Living with a TBI is a reality all its own, and as I reiterate in many posts – it’s different for everyone, including how people around you act, react, overact, act up, or don’t react to you at all. With the Holidays now “officially” here, and Thanksgiving already passed – it’s the time of year that many people dread, and for many good reasons.
The way some people celebrate seems so perfectly “normal” from the outside – the whole family gets together, they have dinner together, or they open gifts, or they have a wonderful party…and that can happen, but from the outside it seems much more “perfect” than anything that we experience in our life. Why is that? Well, living with TBI overshadows a lot of our being, and it’s no wonder…it’s changed who we are in some ways.
It can change us immensely and visibly, or it can change us in a less obvious way – and sometimes, people don’t see what it’s done to a survivor at all. Either scenario can be very frustrating for the survivor of TBI, stroke, concussion, mild TBI, acquired brain injuries, etc.
Making The Holidays More Positive
On one hand, getting together with family and friends during the Holidays after TBI can be an annual test of wills due to lack of patience or empathy for one another, misread intentions, disagreements, or just a lack of understanding for each other.
On the other hand, all families, no matter how perfect things appear on the surface, can have similar issues. Yes, some actual families do get along great, and the Holidays are a positive experience for them – but don’t be dismayed, because (at the end of the day) we’re all perfectly imperfect people. Brain injury or no brain injury!
The point being made is plain and simple – although TBI survivors bear a load of issues in situations with people around, many times they still are left to shoulder the weight of inconsideration, improper actions, comments and more. Being the bigger person is hard to do (especially under the circumstances) but it’s worth the effort!
A Little Empathy Goes A Long Way…
Whether you’re reading this as a TBI Survivor, a caregiver, or as a friend or family member – it’s important to always work toward being empathetic toward each other.
As a survivor, knowing that everyone hasn’t experienced what you have been through is a good rule of thumb for overlooking things that could easily get under your skin. As a friend or family member, remember that you have no clue what it’s like to have a TBI is a good starting point, and overlooking things (that are said) can keep things on an even keel.
The same goes for a TBI survivor that fields negative comments or verbal jabs…working to focus on being together is the point! Enjoying each other’s company is a rarity and should be treated that way – as perfectly imperfect as any of us are.
Here are some suggestions to help make the Holidays less frustrating, and hopefully a better experience for a TBI Survivor (and their friends & family):
• Avoid alcoholic drinks (especially when using medications)
• Noise-canceling headphones or earplugs to bring noise levels down to a manageable level
• Bring someone with you that understands your needs when you go shopping, to a party, or for dinner at home (or elsewhere) with others
• Be careful to avoid sensory overload, and act accordingly at an event if necessary (retreat for a bit, leave early if needed, etc.)
• Be rested before any Holiday party, gathering, parade, etc. – if you know that a Holiday parade or program is going to be overwhelming, you may be better off skipping it altogether
• Do your Holiday shopping (along with a friend or family member, etc.) when crowds are at a minimum
• If blinking or bright holiday lights bother you, plan (in advance) to have sunglasses handy, or even a place that you can retreat to if necessary
• Unless you’re certain that a fireworks display is ok to attend, it may be best to skip it (New Year’s Eve, etc.)
• Movies, concerts, outdoor events with lots of lights can all cause issues for Survivors…base your decisions to go on previous experience when possible. If not, do you best to plan in advance on how you (with a friend or loved one) will have an action plan to deal with it
• Try to avoid situations that may overstimulate your senses. Noise, crowds, lights, etc. can trigger anxieties (fear, panic, etc.) and even fatigue – when your brain is overloaded by too many things going on at once
• Another good thing to keep in mind is to ask for assistance if you need it – taking on too much by yourself is asking for trouble, and if you have someone willing and able to help you, let them!
In closing, if you’re a TBI Survivor – try to pace yourself during the holidays when there’s so much going on, and not get too overloaded with things to do, places to go, and people to see. As a friend, family member, or caregiver of a person with TBI – keep this in mind as well!
Helping advocate for a TBI Survivor is very important, and they will do much better with you as their “overload avoidance” point person (or team). Happy Holidays to all, and we’ll see you in 2020.