Archive for category Caregivers

[BLOG POST] Tackling Brain Injury as a Team – A Brain Injury Life

Tackling Brain Injury as a Team

Brain injury is an existential condition. What’s at stake is life itself. Survivors and families turn to experts for help—specialists with knowledge and experience. But it should be reciprocated. Our expertise is what they don’t know—family history, relationships, and world view. Somehow we must be partners in a necessarily empathic, holistic process. How? Build a team.

Central is the Survivor, then their family, friends and aides (Caregivers) and doctors and therapists (Professionals). Good communication and collaboration are prerequisites, and ideally the partnership grows with mutual respect. It’s hard, but better than going it alone as too many survivors must do.

At the start I didn’t know I had a team or that I was part of it. As I slowly got involved in my own care, my sense of independence grew. That is a team’s potential—a powerful source of strength for all of us living with brain injury, as long as we keep these 5 precepts in mind:

Trust • Listen • Respect • Patience •
Ask For and Accept Help

TRUST

  Survivor: Trust that your best “self” is still there and that the fog will start to lift. But don’t try to go it alone. Find someone who understands you, has earned your trust, and remember they’re on your side.

CaregiversCaregivers: Trust your loved one, even when he or she appears to be a stranger. What you’re seeing is the aftermath of brain injury. Good doctors and therapists are key so choose carefully, then trust them. If you don’t, change.

  Professionals: Trust your patients and families enough to be honest and open about what’s ahead, but with compassion and hope.

LISTEN

Survivor: Keep an open mind by listening to feedback from your family and doctors. Self-awareness takes a hit after brain injury and others may see things you can’t.

Caregivers Caregivers: Stop, look, and listen to what’s behind the words—your family member’s frame of mind and your own. Before replying, pause. Take a slow, deep breath and try to stay calm (you can always scream into your pillow later).

Professionals: Focus on your patients to show you’re listening. Put aside your agenda and directly address their concerns. To improve communication, model the strategies you want them to learn—verify, use stems, delay and chunk.

RESPECT

  Survivor: Respect the person you are now—a brain injury survivor, your life upended, trying to put it right. Respect those around you too. They are your partners working towards the same goal.

Caregivers Caregivers: Don’t beat yourself up when your best efforts don’t seem to be enough. Respect yourself and your team as equals even when you disagree. There is no right or wrong way to cope with brain injury.

Professionals: You’re not the only expert in the room; your patient’s living it and knows things you cannot see. Show respect by talking with them (not to them). Hospital professionals often address the caregiver not the patient. Their questions go unanswered, a spectator to their own care.

PATIENCE

  Survivor: This journey is slow and confusing, but don’t give up. It’s hard to be patient when you don’t see progress so put it in writing. Record and review your successes and celebrate each step no matter how small.

Caregivers  Caregivers You’re learning to live with brain injury as well as advocating for your loved one. The work is exhausting, frustrating; you’re bound to lose patience. Give yourself a break each day—music, meditation, or even a “power nap” may help.

Professionals: Even if time is short patiently add “wait time” to each interaction. Ask a question, then wait. Be alert but quiet for as long as the survivor needs to process your words, their thoughts, and find the words to answer. This gives them a sense of agency.

ASK FOR and ACCEPT HELP

  Survivor: Knowing what you don’t know is a quality not a weakness. Seeking advice is how we learn and take charge of our lives. Turn to your team—they are there to help. Don’t be embarrassed to ask “what?” or “why?” It puts you in the driver’s seat.

Caregivers Caregivers: When someone offers help say, “Yes, thank you,” instead of “I can do it myself,” And don’t feel guilty. Without taking care of yourself, you can’t care for someone else. Reach out to family, friends, a house of worship or support groups to help. Respite is not a luxury. It’s a necessity.

Professionals: Learn from your patient. Ask what they think, what’s working or not, how they’re coping and, if not, what would help. Brain injury makes it hard to express oneself calmly and clearly so be sure you fully understand what they’re trying to say. Follow their lead, be flexible, and willing to change gears.

For a long time I refused (fought) offers of help. Before brain injury I’d always followed my instincts, stubbornly sure I was right, so it was so hard to admit I could be wrong. When I realized how often I misheard or misspoke, I grudgingly accepted the advice of my team and learned to ask for help—gracefully and without shame. It’s funny. The more I did it the easier my life became. I now understand how important the team has been, hearing me out with trust, respect and as a fully supported partner.


To my team and friends, who’ have stuck with me through thick and thin:

I owe a you a tremendous debt of gratitude. I don’t know where I’d be today if you hadn’t taught me what I needed to know and offered your enduring support and empathy. Thank you, thank you.    –Laurie

 

via Tackling Brain Injury as a Team – A Brain Injury Life

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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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[WEB SITE] Keep an Eye on Your Loved Ones at Home with ROSIE

By  | Jan 15, 2020

Keep an Eye on Your Loved Ones at Home with ROSIE

 

Forma SafeHome LLC announces the launch of its senior home monitoring service that aims to facilitate more prolonged in-home independence for aging-in-place seniors or the disabled.

The fall detection and health monitoring customization bundle features advanced technologies integrated into ROSIE SafeHome, an all-in-one, patent-pending app designed to provide alerts, notifications, and messages that show the user if there is any unusual activity.

The app, available for download on iTunes and Google Play, is accessible on smartphones and tablets to allow family members 24/7 access into the safety of their loved ones through the coordination of these technologies, according to the Sunrise, Fla-based company:

  • Non-intrusive fall and motion detectors
  • Kitchen and stove monitoring
  • Outdoor doorbell camera systems
  • Coming soon: medication protocol monitors and more smart home technology

“Our Rosie Home Fall detector, Rosie Home Stove/Oven monitor, and Rosie Home Doorbell Cam will give peace of mind knowing your independent family members are in a safe environment,” says Scott Daub, President, Forma SafeHome LLC, in a media release.

Rich Cohen, Forma SafeHome Advisory Board Member adds, “Through the blend of innovative and non-intrusive technology, the patent-pending app gives you real-time information about falls, safety, and life patterns via your iPhone or Android device. It is affordable and gives you peace of mind about your independent-living family members in ways never previously available.”

[Source(s): Forma SafeHome, PRWeb]

 

via Keep an Eye on Your Loved Ones at Home with ROSIE – Rehab Managment

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[VIDEO] Addison: the Virtual Caregiver on Vimeo

The Virtual Caregiver is a next generation Virtual Assistant, bringing chronic care, rehabilitation, mental health support, caregiver support, and support for daily living unlike anything you’ve ever seen. She’s Connected Health, Digital Health, IoT, AI, AR, Natural Language, and amazing UX and UI interfaces in a breakthrough user configuration. EMR integrated, health peripherals, in-home automated exams, gait and balance, fall risk assessment, and more. Addison Care is the future, today.

via Addison: the Virtual Caregiver on Vimeo

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[WEB SITE] Alexa, Bring Me My Caregiver – Rehab Managment

Alexa, Bring Me My Caregiver

 

What happens when Alexa teams up with a virtual caregiver? The healthcare community is about to find out.

Addison, described as a “virtual caregiver,” debuted last year as a prototype at the Consumer Electronics Show (CES). A lot has changed since then, however, and at the recent 2020 CES show Addison was rolled out to CES attendees sporting new features that her developer Electronic Caregiver, says have upgraded Addison to a “market ready” technology.

Who (or what) is Addison?

Addison Care is an IoT-connected residential health solution designed to perform tasks such as chronic care management, monitoring, behavioral health, rehabilitation suppor,t and continuum of care support. Addison sets up within minutes in a patient’s home and features multiple touch screens networked together with far-field microphones, health peripherals, high-quality sound, and RealSense Intel depth cameras.

The solution includes a voice-powered 3D Virtual Caregiver named Addison. Addison is displayed inside interactive, dynamic 3D scenes and can perform demonstrations, conduct patient assessments, and work with objects inside her environment, according to a news release from the Las Cruces, NM-based company.

When Addison debuted as a prototype, she demonstrated capabilities such as collecting vitals and performing medication reminders. The new features in this year’s update include the ability for health practices to manage in-office patient assessments as well as intake and outtake procedures.

“CES 2020 is a pivotal debut for us,” Electronic Caregiver CEO Anthony Dohrmann says, in the release.

“Addison is now market ready. She monitors vitals through six connected health devices. Her scenes are more capable, dynamic, and fluid. Her voice capabilities are dramatically enhanced. The entire user experience has seen a 100-fold improvement. We’ve added features for child patients, chronic care patients, behavioral health, rehabilitation, and full-network integration with health providers. One of the most exciting Virtual Assistant features Addison will present at CES is the integration of Amazon Alexa.”

For more information, visit Electronic Caregiver.

 

via Alexa, Bring Me My Caregiver – Rehab Managment

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[WEB SITE] Neurobehavioral Challenges After Brain Injury

The effects of neurological damage from events like trauma and stroke can be devastating to the individual and those close to them. Brain injury can result in lifelong physical, cognitive, and behavioral changes. The impact of behavior changes can profoundly alter how the injured person functions day to day, even impeding rehabilitative goals and impacting the ability to live independently. Changes in personality and behavior following traumatic brain injury (TBI) often represent the most significant barrier to a successful outcome including reintegration into the community whether for basic daily tasks, work or recreational/social activities.

Common behavior issues following brain injury include behavioral excesses (occurring too much) such as irritability (e.g., poor tolerance, short temper) and aggression (e.g., hitting, grabbing, kicking), property destruction (e.g., striking furniture, throwing items) and inappropriate vocalizations (e.g., cursing, yelling, threats). Also presenting a concern are behavior deficits (do not occur enough) such as compliance with tasks (e.g., cooperation with requests), social skills (e.g., overfamiliar discussions, uncharacteristically rude remarks), initiation (e.g., knowing when to begin tasks) and the academic and return to work skills (e.g., being on time, following directions) to be successful. Some of the most difficult behaviors can be dangerous to the patient and others around them. Treating these dangerous and challenging behaviors, which may include physical aggression toward others, self-injurious behavior, sexual disinhibition, and escape or elopement, requires a treatment commitment across the continuum of care.

In the early, acute stages of recovery from brain injury, many of the behavioral complications demonstrated are considered to be a normal phase of recovery. When these behaviors continue beyond those early phases, however, and form on-going negative patterns of interaction with others, very specialized treatment is required.  These behaviors can be disturbing to families and staff, disruptive to therapy, and jeopardize patient safety. The future quality of life for the patient and their family depends on effective interventions, provided with a great deal of consistency and structure. Behavior analysts (professionals in Applied Behavior Analysis) add value to interdisciplinary rehabilitation teams by helping to develop both skill acquisition and behavior reduction programs throughout the patient’s recovery (i.e., acute, post-acute, long term care). Behavior analysts spend a great deal of time directly observing interactions, determining what may be motivating the difficult behaviors, and what responses may need to be strengthened and reinforced. The behavior analyst must then provide training to all those who may interact with the patient, including most importantly, the family. This skilled, specialized intervention establishes more effective and acceptable response patterns that allow the patient to have their needs met and be better understood without displaying problem behavior. The structured behavior plan can also help the patient develop positive, prosocial responses, and more efficient functional skills.

The effects of brain injury are highly individual, which then challenges the behavior analysts, family and others on the treatment team to continually evaluate the responses, goals, and outcomes throughout recovery (e.g., monitoring response to new medications).

Considering the risk to patients and families, the rising healthcare cost and the possibility of reduced services being available, a focus on efficient and effective interventions such as behavior analysis seems essential to a well-integrated, interdisciplinary rehabilitation treatment team. The quality of life for those affected by brain injury depends on having the opportunity to receive not just the standard rehabilitation one might get following knee surgery but rather specialized, experienced and effective treatment specifically designed to address the unique difficulties they face including difficult behavior.

via Neurobehavioral Challenges After Brain Injury | CNS Traumatic Brain Injury Rehabilitation

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[WEB SITE] BANISH ugly and useless disability aids with our new shop

Say goodbye to useless and ugly disability aids with the Disability Horizons Shop

If you have a disability even the simplest of products can make the world of difference to your life. But the majority are unsightly or clinical.

Here at Disability Horizons, we want to change that – to give disabled people, like you, access to innovative products that are both practical and stylish.

That’s why we’ve launched the Disability Horizons Shop.

The Disability Horizons Shop includes a curated range of disability products from the best UK retailers and entrepreneurs. Each was selected through a combination of recommendations from our community of readers and our experiences over the years.

On some of the bigger sites, products can get lost in thousands of listings or have ‘fly-by-night’ sellers touting fake or inferior goods. Everything on our shop is from credible suppliers we know, with good reputations for quality and service.

From designer Blue Badge holders, walking sticks and clothing protectors to kitchen/bathrooms aids, slings and wheelchair trays, all products available in our shop aim to enhance your life – with style. Our ranges include:

Scroll below to see a small selection of the products available in our shop and visit the Disability Horizons Shop to check out everything we have on offer.

You can also read our full article on the shop launch to find out more about each of the companies and entrepreneurs we’re working with.

Designed by Sam Renke, this accessible handbag is suitable for anyone with mobility/ dexterity problems and sight loss.

 

This kitchen knife has a unique, ergonomically designed, 90-degree blade that makes slicing and cutting easy.

 

This supportive grab bar is an ideal everyday aid for those with mobility issues who struggle to get in and out of the car.

For more visit —-> BANISH ugly and useless disability aids with our new shop

 

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[BLOG POST] 10 Tips for Including People with Disabilities in Your Holiday Celebrations

10 Tips for Including People with Disabilities in your Holiday Celebration. Graphic of a tree in the snow. Logo for RespectAbility

With the holiday season upon us, it is easy to hold a gathering where all guests — with and without disabilities — feel welcomed, respected and have fun. All it takes is some planning. With some help from Alie Kriofske Mainella, an expert on working for inclusion of people with disabilities, here are some tips to ensure your gatherings are inclusive, thoughtful and welcoming to all.

1. Dont be afraid to include guests with disabilities.

People with disabilities have their disabilities 24/7, so they know how to create work-arounds so that they feel comfortable. If you know someone has a disability, use a simple strategy — ask the person what they need to be fully included. All too often people with disabilities are not invited to events, or dont go because they feel embarrassed to put someone out” by asking for a simple thing that will help them attend. By telling them that their presence is valued, and asking what they need, you will build a new level of trust and affection. For example, one of the biggest things that aging loved ones need is a ride. So help them find a carpool or send an accessible taxi or Uber to pick them up and return them home.

2. Include a line about disability accommodations in the RSVP.

Keep in mind that not all disabilities are visible, so you may not know that someone you want to include in your event has a disability. By including a line about accommodations and food allergies in the invitations RSVP, you are already letting guests know that everyone welcome. If its an event for children, parents can tell you, right off the bat, what their childs needs might be to attend the event. They will be happy you asked! We want everyone to have fun — please let us know if you have dietary restrictions or require other special accommodations to attend! We will do our best to meet special needs.” Note that you arent promising to meet all needs — if you cant find a sign language interpreter at the last minute or there is another issue, for example, you will be able to let your guest know in advance. Indeed, they may be able to help you find a solution!

3. Physical Access.

Most public places are accessible. However, because religious institutions are exempted from the Americans with Disabilities Act (ADA), many of them are not fully accessible. Thus, if your event is at a venue that is not physically accessible to all, move it to a place that is. That can mean a different room in a place of worship, or to a completely different place. Venues should have a ground level entrance or ramp, an elevator if its upstairs, and accessible bathrooms. Most public places (hotels, restaurants, bowling, video games, pools, bounce houses, etc.) are usually equipped for people with disabilities. Just check with the venue ahead of time. If you have someone coming who uses a wheelchair, you should also put the food on a table that is low enough for them so they can take it themselves.

4. Special Diets and Fragrance Allergies.

Anyone can have allergies, celiac disease or lactose intolerance, but you wont know unless you ask on the invitation RSVP. Making sure there is an option for cake, snacks, treats and other food for these guests can be as simple as picking up a gluten free cupcake to serve with the cake. It is thoughtful to have refreshments that everyone can enjoy and/or asking people not to wear perfume to your event.

5. Addressing attitude.

Kids and adults can be daunted when encountering someone who is different from them. If children are at the event, you can talk to them at the start of the event about kindness and respect for each other and each others differences. A holiday gathering is a great opportunity for kids to learn about one another.

6. Involving parents.

Holiday gatherings can be exhausting for the hosts. Asking a parent or two to volunteer to help out, particularly if its a big group, can lighten the load for the hosts. Parents may feel more comfortable, especially if their child has social anxiety issues, if they are invited to stay or help as an option.

7. Sensory overload awareness.

Holiday gatherings can cause sensory overload for any child or adult. But for a person with autism or a sensory processing disorder, a large gathering can be really overwhelming. Offer opportunities for guests to take a break, perhaps in a quiet room away from the crowd. Some venues may have options for turning down music or minimizing stimulation — and that is useful anywhere there are a lot of kids! Latex allergies (balloons) and chemical sensitivities (use of highly scented cleaners or staff wearing perfumes) are real issues. Solutions: Use alternative mylar balloons. Ask people to not wear strong scents, and choose unscented cleaning products. Avoid flashing lights that can trigger seizures in people with epilepsy.

8. Communication.

If a guest attending the gathering is non-verbal or communicates in other ways such as American Sign Language or a communication board, talk about it with the guests. Installing free Dragon software onto an iPad in advance can enable you to speak with someone who is deaf as it instantly transcribes what you are saying. Having an interpreter can be worth the cost, as all the people can communicate and maybe learn a little sign language! Remember to speak directly to a child or adult whether they are verbal or not.

9. Reading, Cognitive Access and Vision Issues.

Children and adults with cognitive, learning disabilities or vision impairments might not be able to read the menu, instructions for a scavenger hunt or a game score sheet. Pictures and verbal instructions are useful, as well as pairing children with those who can help. Its always great to have an extra pair of reading glasses around if you are inviting seniors. But you can always tell someone who cant see or read what they will need or what to know.

10. Enjoy the gathering!

Dont let inclusion stress you out. If you are reading this list and considering these tips, youre already doing more than most! Stay positive, smile and have a great time!

via 10 Tips for Including People with Disabilities in Your Holiday Celebrations – Respect Ability

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[VIDEO] Aphasia – Imagine life without words – YouTube

Aphasia – Imagine life without words – it could happen to you.

All comments are welcome on our Facebook page at http://www.facebook.com/Understanding…

Aphasia (or dysphasia) is a communication difficulty caused by brain damage. Most people who have aphasia have had a stroke, but it can also occur from tumours, infection and progressive diseases like motor neuron disease (ALS).

There are different types of aphasia like Wernicke’s, Broca’s. Conduction, Anomic and Global Aphasia which relates to the part of the brain that’s damaged. The term is also a descriptor of whether you lose your capacity to understand speech, talk, read and/or write. There are also different severity types, Global being the most severe as it affects all modes of written and verbal communication. However there is one commonality, the person with aphasia’s frustration at not being able to communicate in the way they used to.

This video on “Aphasia – life without words” was made by a Speech Pathologist and aims to take you into the world of a person with aphasia – a young mother who struggles to do everyday things. How does she shop? Eat at a café? Spend time with friends? This video also shows real life examples of supports and treatment options anyone can put in place, once they have been shown how.

Millions of people suffer from this condition, its time they had a voice, it is time people understood aphasia.

Please share this link with friends, family and colleagues and help raise awareness.

Aphasia: FIND the opportunity, MAKE the difference

via Aphasia – Imagine life without words – YouTube

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[BLOG POST] Take Care of Yourself for the Holidays – Collection Spotlight from the National Rehabilitation Information Center

Take Care of Yourself for the Holidays

 

The hustle and bustle of the holidays can be stressful. We may feel like we have so much to do with work, travel, hosting guests, and finding the right gifts for the people we love. If you are a person with a disability, or if you are caring for a person with a disability, you may find that the stress is taking its toll on your mental and physical health.

Self-care is any activity that you do deliberately to take care of your physical, mental, and emotional well-being. Acts of self-care can include taking yourself to lunch or  a massage, accepting or declining an invitation to a gathering, or saying “no” to a request that can be handled by someone else. By taking care of yourself, you will be better able to care for those around you.

Self-Care for Self-Advocates

For some people with disabilities, mindfulness can be a self-care strategy (PDF), according to the Rehabilitation Research and Training Center (RRTC) on Pathways to Positive Futures. Mindfulness meditation heightens awareness about one’s mental and physical experience, and that awareness can be channeled into identifying opportunities to reduce stress and care for the body and mind. Journaling is another way to be mindful of how you are feeling, and Journaling – A Wellness Tool from the Center for Health and Self-Directed Care can get you started. You may also consider reaching out to your community for advice and support. The National Research Center for Parents with Disabilities has articles packed with advice from parents with disabilities on where they can turn for help in their communities.

Self-care may include making time to exercise or to spend time with family. The National Center on Health, Physical Activity, and Disability offers many articles and resources for individuals and caregivers, like this 35-minute inclusive yoga video. The RRTC on Community Living and Participation for People with Serious Mental Illness has several guides and tools to encourage physical activity and leisure and family time.

While self-care is much more than a bubble bath, a long soak can be an act of self-care. Spending some time taking care of your skin, hair, and other areas may be how you choose to show yourself some loving attention. AbleData offers examples of assistive technology that can help with grooming and caring for your physical appearance.

Self-Care for Caregivers

Research has shown that more than half of caregivers in the US provide 40 or more hours a week of care for a family member or friend with a disability, including aging parents and young children with disabilities. They often provide care on top of working full time. It can all take a toll, mentally and physically. The Rehabilitation Research and Training Center on Learning and Working During the Transition to Adulthood’s factsheet points out that For Families or Caregivers: Self-Care is Putting on YOUR Oxygen Mask First (PDF). “If you do not take care of yourself, you cannot help others. Being the caregiver for someone with a mental health challenge can be very difficult, but you must take a little time for yourself. Self-care can start with just 5 minutes a day!”

When one is in the middle of providing care, it may be challenging to stop and consider your own health. The Caregiver Self-Assessment Questionnaire, originally developed and tested by the American Medical Association, offers an online assessment for caregivers to help them make decisions about their own behavior and health risks. The Family Caregiver Alliance’s National Center on Caregiving offers many supports for families caring for a person who is aging or has a disability, such as this article Taking Care of YOU: Self-Care for Family Caregivers. The Department of Veterans Affairs Caregiver Support program has a Self-Care Assessment and Daily Attention Diary which includes a daily attention diary and a post-month self-care reflection. The diary offers an extensive list of signs and symptoms of caregiver stress, along with hundreds of suggestions for stress relief activities. Any caregiver can use the diary to track signs and symptoms of stress and address their self-care needs.

Respite care can be a self-care option for caregivers. Respite care programs provide a short-term relief for primary caregivers – an afternoon, a few days, or up to a week. Respite care can happen at home, in a respite facility, or in an adult day center. Contact a Center for Independent Living in your community or visit the Eldercare locator to find out about respite services in your community.

During this busy, stressful time of year, we hope you can give yourself the gift of self-care, in whatever form you need.

 

via Take Care of Yourself for the Holidays | Collection Spotlight from the National Rehabilitation Information Center

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