Posts Tagged Caregivers

[BLOG POST] If I Get Covid-19 It Might Be Ableism – Not the Virus – That Kills Me

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.

Dear Doctor,

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:

via COVID-19 Hospital Rationing Policies Endanger People With Disabilities | The Mighty

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[QUOTATION] A brain injury is like…

Η εικόνα ίσως περιέχει: πιθανό κείμενο που λέει "A brain injury is like rebuilding after natural disasters. There is a great deal of time, blood. sweat, tears and expense involved in our reconstruction process! Debbie Wilson"

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[WEB PAGE] ‘No end in sight’: The lifetime commitment of caring for a loved one with a brain injury

Cheryl Graham has been caring for her daughter, Jodi, since a catastrophic collision in 2006

Cheryl and Jodi Graham sit together in Jodi’s bedroom. In 2006, Jodi suffered a traumatic brain injury in a car crash. Cheryl quit her job to care for her daughter, and has been doing so ever since. (Trevor Pritchard/CBC)

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.

Jodi and Cheryl take part in the 2009 Ottawa Race Weekend three years after the crash that caused Jodi’s traumatic brain injury. Jodi was an avid athlete before the crash. (Jerry Hiscock)

Slow recovery

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.”

Jodi uses touch-screen technology to go online and send emails and text messages — just one of the many modifications the family has made to their home in the years following her traumatic brain injury. (Trevor Pritchard/CBC)

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.”

Cheryl helps Jodi apply paint to a canvas during a fundraiser for the Jodi Graham Foundation on Feb. 22, 2020. The foundation is trying to raise money for a residential care facility for people with traumatic brain injuries. (Trevor Pritchard/CBC)

Housing needs

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.”

VIDEO: What it’s like to care for someone with a brain injury

via ‘No end in sight’: The lifetime commitment of caring for a loved one with a brain injury | CBC News

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[ARTICLE] Finding a new balance in life: a qualitative study on perceived long-term needs of people with acquired brain injury and partners – Full Text

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.

Introduction

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 (38). 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 (6,1518). In addition, PwABI have difficulty finding and accessing services to support them with these issues (1619). 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 (17,2022), 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.[…]

 

Continue —->  Finding a new balance in life: a qualitative study on perceived long-term needs of people with acquired brain injury and partners: Brain Injury: Vol 0, No 0

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[WEB SITE] 10 things not to say to someone with a brain injury

10 things not to say to someone with a brain injury

 But you don’t look disabled!

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.

 

via 10 things not to say to someone with a brain injury | Headway

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[BLOG POST] Perfectly Imperfect For The Holidays – TBI Survivor Tips and Observations

By Bill Herrin

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.

Some Suggestions

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…

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.

 

via Perfectly Imperfect For The Holidays – TBI Survivor Tips and Observations

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[WEB PAGE] I’m clawing my way back from a brain injury, so please be patient

ILLUSTRATION BY ASHLEY WONG

First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.

I was 35 years old when the inoperable arteriovenous malformation (AVM) in my brain was first diagnosed.

After years of headaches and cervical pain (which I later found out were small cerebral hemorrhages), and after years of being told by doctors that I suffered from stress headaches, migraines and poor coping skills, the undiagnosed vascular grenade in my head finally blew.

I lost the feeling and movement on the left side of my body, and the vision in my left eye doubled – I saw two of everything. I lost my balance and my co-ordination. It was a hard thing for a previously healthy young woman – a mother, nurse, wife and go-getter – to deal with.

Time, rehabilitation, physiotherapy, a lot of sweat and tears … those losses all came back – maybe not as good as they had once been, but they came back.

That was 18 years ago. A lot has happened since then.

I hear voices, but I am learning to ignore them

Running nearly killed me, but it also saved my life

Over the years, as I experienced repeat bleeding, endured radiation and battled brain swelling, I lost and rebuilt many many things.

I lost my career (I was a military nursing officer), my husband to divorce, my confidence – and more than just a little bit of who I was.

Brain injury is a thief. A silent and invisible thief.

When the brain is first injured, little thought is given, in those first crisis stages, to feelings. There is just no time to worry about the emotional when the fight is on to save brain function.

However, in my all-too-informed opinion, the emotional fallout of brain injury can be just as important as the physical in the long run.

I don’t presume to speak for everyone. More than any other organ, the brain remains a mystery; it’s unique to each person. Some brain-injury survivors suffer no deficits at all, others simply never come back. And some, like me, get stuck somewhere between who we once were and who we are eventually going to be.

The first thing I want people to know is that I am still here. No, I am not the same. I have lost pieces of myself. I may never again be exactly who I was and who you knew, but I am still here.

I am still me.

I am, I have to admit, a little slower than I was. My processing speed is seriously messed up. I will no longer be the nurse who can juggle multiple patients or the mother who can hike and bike and keep up with her two busy sons. But I will always have that deep need to help others that all nurses have, and I will always love my sons and family as I always have.

Those parts of me remain.

So, have patience with the slower me. And have patience with the tired me.

Of all of the things that have proven unbeatable and intractable on this long journey is the fatigue. It is pathological and relentless and well … embarrassing. If you catch me napping in the afternoon (and I now must do so almost every afternoon), please do not go out of your way to make me feel lazy or indulgent. My brain – energy suck that it is – is simply working overtime, rewiring and rerouting signals; doing whatever a brain must do when its normal pathways have been obliterated.

I also ask that you forgive the new unpredictable me.

I will have good days and I will have bad days. There are days when I won’t answer the phone and days that an unexpected headache will send me into hiding. I will inevitably cancel plans. I will skip an appointment or bail on lunch or refuse an invitation.

Please, don’t take it personally.

I now have a hair-trigger head. Sometimes, it seems that any little thing can set it off. The weather can be my enemy, a certain type of food, too much activity.

With all that my poor brain went through, I now have to deal with this thing called “flooding” – which I’ve since learned is a common brain injury outcome for those like me. My normal brain filters are all but fried and can no longer muffle or regulate incoming (or outgoing, unfortunately) information as it once did. Too much noise, too many lights, too many people, too much anything is all amplified in my head. Too much unregulated input can all too quickly turn into a roar, a buzz that will shut me down, make me stutter and become so overwhelming that I can’t find words, I mess up and I lose things.

So please, don’t rush me.

Sit down and join me in my quiet, now slower world. I am good in the quiet – deserted beaches are my happy place – and still quite social when there are only one or a few people to interact with.

I may not always be able to join you in your world, but I do hope that you will choose to join me in mine every once in a while. For, while it may not be as exciting or as busy as yours, this is where you will find me – a little broken, perhaps, and with a few pieces missing – but you will find me.

I’m still here.

Brenda Lloyd lives in Frankford, Ont.

via I’m clawing my way back from a brain injury, so please be patient – The Globe and Mail

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[BLOG POST] 38 Ways to Relieve Stress Quickly

38 Ways to Relieve Stress Quickly

We all experience stress – sometimes a lot and sometimes not so much. Stress, your body’s reaction to change, can be related to positive changes like starting a new job or having a baby. But usually, when we talk about stress, we mean distress. This type of stress overwhelms your ability to cope and when it’s chronic or intense it can negatively affect your health, relationships, and emotional wellbeing.

 

Recognize the signs of stress

Stress, like many things, is easier to deal with when we catch it early. So, being aware of how stress shows up in your body and mind means you can use stress-relieving strategies before your stress gets out of control.

Common symptoms of stress include:

  • Irritability or anger
  • Headaches
  • Gastrointestinal issues (stomach aches, constipation or diarrhea, etc.)
  • Insomnia or trouble staying asleep
  • Excessive worrying
  • High blood pressure
  • Rapid heart rate
  • Grinding your teeth
  • Muscle tension (stiff/sore back and neck are common)
  • Lack of sex drive
  • Pessimistic thoughts
  • Fatigue
  • Forgetfulness
  • Trouble concentrating
  • Feeling overwhelmed

You may also find it helpful to identify situations that you regularly find stressful (such as meeting with your boss) and behaviors that you engage in when you’re stressed (such as overeating or biting your nails).

Ways to relieve stress in 10 minutes or less

Below, you’ll find a list of simple and quick ways to relieve stress. These are particularly helpful for acute stress and aren’t intended to be the solution to chronic or intense stress.

  1. Listen to your favorite music
  2. Get some fresh air
  3. Stretch or do some yoga poses
  4. Do a grounding exercise
  5. Disconnect from technology
  6. Talk to someone supportive
  7. Meditate
  8. Look at photos that make you smile
  9. Squeeze a stress ball
  10. Read for pleasure
  11. Walk, bike, or skateboard around the block
  12. Count to 10 slowly and repeat
  13. Dance
  14. Journal
  15. Write down 10 things you’re grateful for
  16. Doodle, draw, color, or Zentangle
  17. Chew a piece of gum
  18. Watch a funny video on YouTube
  19. Punch a pillow
  20. Slow, deep breathing (I like the “breathe bubble on the Calm app.)
  21. Read an inspirational quote
  22. Spend time with your pets
  23. Do 20 jumping jacks
  24. Do something nice for someone else
  25. Sit in the sun
  26. Visualize a safe, comforting place
  27. Pick some flowers (or pinecones or leaves or seashells or rocks)
  28. Give yourself a neck massage
  29. Take a shower
  30. Kick a soccer ball
  31. Diffuse essential oils or use scented lotions or candles (Bergamot, lavender, and yuzu are a few to try.)
  32. Tend your garden; water and talk to your plants
  33. Hug a loved one
  34. Knit
  35. Savor a cup of decaffeinated tea or coffee
  36. Repeat a mantra
  37. Do a progressive relaxation exercise 
  38. Make a list of your worries and identify which you can do something about

Make your own list of ways to relieve stress

When you’re feeling stressed or anxious, it can be hard to think of effective, healthy coping strategies. Having a list of stress-relieving activities at hand can be very helpful. This way, you’re ready whenever your stress level spikes.

I find it’s helpful to have a variety of stress management strategies. You will need to use different strategies when you are at work, school, or home. Sometimes you have more time and other times you are limited. And, of course, we have personal preferences and all find different strategies more or less helpful.

To get started, you can choose a few of your favorite ideas from the list above, write them down, and add or subtract ideas as you try them.

You can also print a PDF of my 38 ways to de-stress quickly and hang it on your refrigerator or bathroom mirror. You want to have healthy coping strategies readily available, so you don’t have to think too much about it when stress is at hand. The more you practice them, the more automatic they will become.

This PDF is available as part of my free resource library. To access 30 free emotional wellness worksheets, tips, and articles, just sign-up HERE for my weekly updates and free resources.

 

via 38 Ways to Relieve Stress Quickly | Happily Imperfect

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[WEB SITE] The Top 10 Caregiving Blogs for Caregivers – Caring Village

Being a Caregiver can be tough and unfortunately, life doesn’t slow down to give you time to learn how to care for someone you love. This is why caregiver blogs, which provide resources and information (often from other past or present caregivers and/or industry professionals) can be extremely helpful in navigating your caregiving journey. Below is a list of the top caregiving blogs online including Caring.comThe Caregiver SpaceTransition Aging ParentsThe Caregiver’s VoiceCareGiving.comEldercareABCeCareDiaryDaily CaregivingCaring for Parents Made Easy, and Caring Village’s own resource section.

Caring.com

Caring.com is a leading online destination for those seeking information and support as they care for aging parents, spouses, and other loved ones. Their mission is to help the helpers. They equip family caregivers to make better decisions, save time and money, and feel less alone — and less stressed — as they face the many challenges of caregiving.

The Caregiver Space

The Caregiver Space provides a safe and open space—at no cost— where visitors can be real about what it’s like to care for someone dealing with a serious disability or illness. Use their community forums to ask questions, share experiences, get real answers, or just get things off your chest.

Transition Aging Parents

Transition Aging Parents is a blog written by Dale Carter, a respected voice for adult children of aging parents. Since facing her own mother’s health/life crisis in 2008, Dale has established herself as a voice of reason, as she has traveled around the country from the Midwest to Atlanta, through Florida and New York City. She shares her message of how to approach any change or crisis in your aging parent’s life with clarity and confidence. Since immersing herself with authors and experts in the field of gerontology, she has expanded her reach to adult children across this country. She wants to now show you how to guide your aging parent(s) so they can thrive and find joy in every stage of their life.

The Caregiver’s Voice

Founded in 1998 by Brenda Avadian, MA, TheCaregiversVoice.com serves family caregivers and professionals who work with adults with cognitive impairment or dementia caused by Alzheimer’s, stroke, related illnesses, or trauma.

CareGiving.com

Denise M. Brown launched CareGiving.com in 1996. The site features the blogs of family caregivers, weekly words of comforts, weekly self-care plans, daily chats, a Community Caregiving Journal, free webinars, and daily chats.

EldercareABC

The ‘ABC’ in EldercareABC stands for ‘About Being Connected’. So come in, get connected and have your say about what information you need. Most importantly discover a group of people that are here to support you and who you can support in your own way.

eCareDiary

eCareDiary is a web community created based on the founders experiences as caregivers for their parents who were diagnosed with chronic illnesses such as Parkinson’s, Type II diabetes, and dementia. Having backgrounds in the healthcare system, they found coordinating long term care to be difficult and frustrating because of the lack of good resources available online. They created eCareDiary.com as a centralized place to help families with care coordination by offering comprehensive online tools, expert content, and resources.

DailyCaring

DailyCaring is for the 43.5 million adult family caregivers who care for someone 50+ years of age. They’re perfect for family caregivers who use the Internet to find solutions for day-to-day challenges, help with important care decisions, and advice on how to plan for the future. They also cater to help professionals in the aging care industry.

Caregiving for Parents Made Easy

Caregiving for Parents Made Easy is a site designed to give you some tips and tricks for navigating the caregiver role. If you’re new to caregiving, this site provides places to turn for caregiving resources, as well as general resources for older adults.

Caringvillage.com

Caring Village is a caregiving assistance platform that makes caring for an older loved one safer,easier, and less stressful. The Caring Village suite of easy-to-use mobile apps, interactive dashboard, and marketplace allows families to easily communicate, collaborate and coordinate caregiving activities for their loved ones. With insightful content and preparedness checklists, Caring Village helps provide you with all the information you need to be the best Caregiver you can be.

via The Top 10 Caregiving Blogs for Caregivers – Caring Village

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[BLOG POST] 10 Things My Doctor Didn’t Tell Me About Traumatic Brain Injury Recovery

10 Things My Doctor Didn’t Tell Me About Traumatic Brain Injury Recovery 

After my traumatic brain injury (TBI), a trauma doctor, a neurologist, and a brain surgeon watched over me while I was in the ICU and trauma wing of the hospital. I am extremely grateful for their help during that fragile and scary experience. However, when I left the hospital, they largely left me in the dark regarding traumatic brain injury recovery.

With help from others (mostly my mom) I was able to connect with resources to help me face the challenges I was having. Lo and behold my challenges were very common for TBI survivors. I had no idea that other people were facing the same thing.

I wish my doctors would have prepped me better for what life is like after a TBI. If you are new to the journey of at TBI survivor (or still trying to figure things out), here are 10 things I wish the doctors would have told me about traumatic brain injury recovery before I left the hospital.

1. No Two TBI’s Are the Same

Even when people have similar challenges as a result of their injury, the speed of a recovery, how much a person recovers (50%, 70%, or 90%), which medication can help resolve symptoms (if it works at all), and many other factors vary widely from person to person. You can’t see a person who recovered 100% and say “that will be me”. You also can’t see someone who faces significant challenges after a long period of time and think that you will not make any improvement.

2. There Are Groups with Resources to Help TBI Survivors and Caregivers

Lots of them. In the US, the Brain Injury Association of America is a great resource with branches in many states. The branch in California put me in touch with a doctor that really helped me. Another good resource are hospitals. They often host support groups for TBI survivors and their families. If not, they will be aware of the groups that do meet in your area.

Please take advantage of these groups! Everything changes so much for everyone involved, especially the relationships between them. The support groups give you a place to vent your frustrations and get support from other people walking the TBI road.

For some help with exploring the new relationships, I’ve written two articles, one for survivors, and one for family & friends that highlight some of the big changes and give ideas for addressing them.

3. There Are Some Very Common Deficits after a TBI

Since a TBI affects your brain, it can ripple into every part of your life. Some of it also depends on the part of the brain that is affected. Nevertheless, here are some common ways that at TBI shows up:

  • Memory problems, especially short term memory
  • Bad temper/mood swings
  • Balance
  • Visual processing
  • Motor control
  • Depression
  • Anxiety

If you are experiencing any (or several of) these effects after your TBI, know that it’s completely normal for TBI survivors. If you have any doubt about that, go to a TBI support group. You WILL find survivors there who will offer you encouragement because they dealt (or are dealing) with the same thing.

4. There is No Time Threshold for Recovery

The medical opinion used to say that said your recovery will happen within two years. It also said that whatever abilities haven’t returned by then will never come back. Some doctors who don’t specialize in traumatic brain injury recovery, continue perpetuating that myth. Over the last several years, doctors have found that our brains are capable of learning indefinitely after a brain injury.

I can tell you from my own experience that this seems to be true. My accident was nearly 6 years ago. Although my recovery was the fastest in the first two years, I still feel and observe occasional improvements in different things. Another example is of a woman I met recently at TBI support who is starting to learn to walk again. Her injury happened 13 years ago and has been confined to a wheelchair since then. It’s a long road. Don’t give up. Keep working at it.

5. Spend Some Time Investigating Alternative Approaches to Dealing with Your Symptoms

Medication did provide the biggest breakthrough to controlling my temper after my injury. However, I wanted to explore additional options to cope with it. I found exercising to be very helpful. Mindfulness meditation also provided some help. I still use both of these strategies on a regular basis. I haven’t used it myself, but some people in support groups mention that aromatherapy helps them. Explore the different options and listen to your mind and body to see what works best for you.

6. BEWARE of Overstimulation

Yes, I put beware in all caps. This is a big deal. I can’t believe that no one mentioned this to me when I left the hospital after my injury. Many TBI challenges are made worse once your brain is maxed out. An injured brain’s tolerance for stimulation is much lower than a brain that is not injured. Remember any outside input is stimulation.

For me, by biggest challenges were on my phone. Too much social media, YouTube, and too many games. I also watched to much TV. The stimulation from those activities accelerated me reaching my threshold. Once I maxed out, I became more irritable, had a harder time focusing on important tasks, and had a harder time remembering stuff. Give your brain the down time it needs to recover. Over time you will likely be able to tolerate more outside stimuli. But at the beginning, take it easy.

7. Balance Pushing Yourself and Allowing Down Time

I firmly believe that getting back to work quickly helped me recover as much as I did. However, in retrospect, I might have done it differently. For the first 6 months I didn’t know I needed to beware of overstimulation, so I would work like I was operating at 100%. But by 1pm everyday, I was maxed out, irritable, and extremely angry. Some down time during the work day, or taking on fewer projects would have helped me avoid that anger. Listen to your brain, your body, and those closest to you. Push yourself as much as you can, but back-off when necessary.

8. Physical Fatigue

Rebuilding a brain must take a lot of energy, because it can leave you very tired. During the first few weeks after my injury, I slept for 12-16 hours a day. I needed 10 hours of sleep per night until about 3 months after my injury. It’s normal, and it’s giving your brain the time it needs to heal itself.

9. You Will Be Living with an Invisible Injury

It’s quite likely that you have some physical injuries associated with whatever caused your TBI. Most of them will heal 6-12 weeks after your accident. Once the casts, splints, and braces are removed, people will stop asking what happened and assume that you are doing well. It’s hard to blame them, because there aren’t any visual cues telling them something is wrong. Any of us might do the same thing.

Of course, we know that we have an injury and we are healing. Since our injury is invisible to others, there will be times when we seem “off”. Maybe it’s a word that we can’t seem to find, or we are unusually forgetful or irritable. People will make a judgment, because they don’t have the whole picture. It’s tough to be on the receiving end of those judgments.

10. Accepting the new normal

After a TBI, we can’t hit an undo button. This is who we are now. I spent a lot of time worrying at the beginning of my TBI journey because I didn’t want to accept this. Once I accepted what was, it made it easier to look at what was in my control and start working with that. My post-TBI life became a re-start opportunity. Reframing the situation didn’t make my problems go away, but it did make it easier to face them.

Bonus: Give Yourself Time to Grieve

I nearly forgot to include this. The transition from the “pre-TBI you” to the “new-TBI you” is very real, and it’s a lot like mourning your own death. Sounds odd, I admit. However there is a real loss that happens after a TBI. Some of what we might experience includes the loss of cognitive function, the loss of your old personality, of your memories, the loss of physical abilities, the loss of relationships, the loss of employment, to name a few.

Note to the wives, mothers, girlfriends, etc of men who have experienced a TBI. Grieving does not equal crying. Crying can be part of the grieving process, but it doesn’t have to be. There are lots of ways to grieve. If your man grieves one way, and you grieve another, that’s perfectly normal. What’s important is that you support each other in the process, so you can prepare for the journey that is to come.

Note to men: Guys, we’re not always great about feelings. We’re tough, want to be independent, and have a hard time admitting when something is wrong with us. But this grieving process is important. It helps you process the changes that have happened, face what is, and prepare for the new journey into the future. And I am not telling you to cry. Crying might be part of your grieving (it was for me), but it doesn’t have to be. Find what works for you. If you’ve had a TBI, take the time to grieve what’s happened. It will do worlds of good to help you through the recovery process.

The grieving process also applies to those around us: spouses, children, parents, friends, and employers. You can check out this great article from Brainline about about the grieving process after at TBI.

Traumatic brain injury recovery is HARD, and it takes more grit that I thought I had. If someone had shared this information with me at the beginning, it would have really helped me regroup sooner, work smarter, and be more patient with myself.

Is there anything else you would have included on this list? Leave it in the comments below.

If you found this guide useful you can sign up here to get get ideas and support to help with your recovery from TBI. Starting tomorrow, you will receive my 4 part email series where I cover several techniques to help you (or your loved one) with the TBI recovery journey.

 

via Traumatic Brain Injury Recovery | 10 Things My Doctor Didn’t Tell Me

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