Posts Tagged Caregivers

[BLOG POST] One Is The Loneliest Number – after TBI Traumatic Brain Injury Survivor

By Bill Herrin

TBI can make you feel isolated

One of the most unsettling things I see in the TBI community is when survivors feel isolated and lonely. There have been heart-wrenching posts and comments on our blog site about families that shun (or brush off) their own family members that have experienced a traumatic brain injury. Worse yet, I’ve heard people say that they are totally on their own because they just don’t have emotional support from family (or friends). There is no way that I can offer a solution that will work for everybody – for that matter, even for one survivor…but I’m gonna try to give some pointers that can alleviate some of the frustration and hurt that’s caused by loneliness and the things that can make it feel even worse.

It’s hard work

The very first thing I’ve recognized as the rallying cry of survivors is “you don’t know it unless you’ve experienced it” – and that surely is true. Letting people know how your brain injury feels is like describing the color and texture of an abstract painting to a blind person. They have no point of reference to even work with.  To many, the conditions, effects, and feelings experienced by a TBI survivor are inexplicable in words…although some are able to do it. I will be referencing a book offered by Lash & Associates Publishing to help find ways to combat the depression and anxiety that survivors experience, to find ways to cope, and to encourage caregivers as well.

In the book titled “Lost & Found” – a brain injury survivor herself, offers these succinct nuggets of wisdom:  “Healing and rehabilitating from a brain injury takes a long time. It continues long after formal rehabilitation has ended. It is the hardest work I have ever done. It requires endless courage, determination, motivation, and
support. It usually involves rebuilding multiple areas of not just your life but also your being – all at once. How could there be an easy solution for all of that!

Brain injury doesn’t have to be a destination. It is a journey. Let it be only part of who you are to become. “Don’t accept timetables for recovery.”

— Jill Bolte Taylor, Ph.D., Neuroanatomist

The Key is Incremental Strategy

Follow your heart...and find progress.

Strategies are key in making “baby steps” toward better cognition, a better mood, a better outlook, and a better life. Much progress can be made with encouragement from friends or family…but what about those that don’t have that kind of social “safety net”? Be encouraged. Your will to improve is the key to doing the right things and working to get the right results. As always, there will be naysayers that will immediately point out that “you’ve been this way for a long time” or “you’re wasting your time.” Well, with that kind of encouragement, you’ll be better off doing your best – one step forward at a time. Don’t even consider the steps backward…life hands those to everyone anyway!

Incremental strategies are the ticket to incremental change. Biting off more than you can chew is not a good plan! Start off small, find strategies that work for YOU, and repetition is a good thing. If you’re repeating a step, and you know that you are…that’s a great thing! If you recall how your brain used to process information, but you realize that it has changed…good for you! That is a baseline for working on your cognition. Remember, working in tandem with your doctors, therapists, caregivers, etc. is also very important. You’re not going to make measurable progress without someone that can see your “mile markers” and take note of them. Caregivers can also help with that.

Here’s an excerpt from Lost & Found that is a prime example of working toward healing: “Know that in time, as you heal, it won’t always be this hard. You won’t have to plan and strategize each and every little step you take. So remember you are healing, imagine yourself with a cast on your head and be kind to yourself. Treat yourself like you would any loved one with a serious health issue.

Remember to reward yourself for every successful task and effort, no matter how small. Pat yourself on the back and take a break doing something that will make you smile. We have to be our own cheerleaders now, like the supportive people in our lives were when we were growing up.”

Wow…that’s powerful, but also takes grit and determination. Believing in yourself is always easier when you have cheerleaders – but for those who don’t, that excerpt makes a lot of sense.

Believe.

Emotional healing can come through a combination of things – here are a few (a more detailed version is available in the book, Lost & Found), but here’s a brief Believe in yourselfoverview… Keep a grateful journal or victory log; Discover your “inner poet” by writing phrases that are meaningful to you; Journaling about your day can help you build confidence and see progress; Keep your perspective by noting improvements on a calendar; Challenge and learn from negative thoughts; Take time to smile; Forgive yourself – can’t do what you used to do? You’re only human! Remember that you’re still the same unique and valuable person that you always were; Try to have positive people around you…that supports your life moving in a positive direction; Work with art. Creative outlets are rewarding and fun. These are things that encourage and grow you as a person – with or without others’ approval.

Many times, people in your life are grieving the loss of the “old you” and trying to establish how to interact with the “new you” – just like you are. That can also make an awkward transition for family and friends. Seeking spiritual counsel can be a huge boost as well – if you attend a church, synagogue, etc., or want to…that could be a great way to grow your positivity in life and make some new acquaintances too.

Here’s another excerpt from Lost & Found:  “Keep in mind that your family members and friends may be grieving too. They have lost the person you used to be and the roles you used to play in their lives. They don’t know how much of your former self will return, or when.”

And a quote from the same book: “Honoring your feelings is what helps you move beyond the pain.”

— Janelle Breese-Biagioni

This last excerpt from the book really sums up what so many TBI survivors need to hear…

“Remember you are healing, even if you can’t see a wound! Think of your brain in a cast, as it would be if you broke any other part of your body. If you broke your leg, you wouldn’t expect yourself to run a marathon right away, even if you were previously a marathon runner. First, you would be in a cast and you would rest a lot. Then you would start walking with crutches on even surfaces. The next step might be walking with a cane. You get the idea; it would take a lot of healing before you could run again, never mind run a marathon! Most of us try to run marathons with our brains all the time!

Work to make good things happen.

You won’t be able to do everything you used to, at least not right away. Everything will be harder and take a lot longer to do than it used to. You can compensate by cutting back, simplifying and being kind and patient with yourself. Avoid the tendency to push yourself too hard. Rehabilitation is a delicate balance between challenging yourself enough to promote healing and not so much that you have discouraging setbacks.

So picture yourself with a cast on your head and remember to rest, celebrate the smallest gains and balance out all the hard work with something that makes you smile, every day. You are engaged in one of the toughest challenges of your life, if not the hardest but it will get easier in time.”

Root for the Home Team…YOU!

In closing, the hardest takeaway from all this is that “going it alone” is hard but doing it without positive people surrounding you may be even harder. Cheerleaders are great, but they have to be rooting for the home team…and you’re the captain of the home team! Make the best choices that you possibly can and be encouraged – knowing that if all else doesn’t go as planned, you can rely on yourself to try and make things better. And you can also claim all of the credit. As always, be sure to let your doctor(s) know your intentions, and hopefully, they’ll be excited for your long-term efforts to improve. TBI is tiring, overloading, depressing at times, and can cause irrational behavior. With all that said, there’s always room to plan for incremental change.

Here’s a great and inspirational quote from Beverly Bryant:

“Being a brain injury survivor = Being a stranger in a familiar place.”

Amen to that!

 

If you’d like to know more about the Lash & Associates book titled “Lost & Found”…just click this link!

via One Is The Loneliest Number – after TBI Traumatic Brain Injury Survivor

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[BLOG POST] MUSIC by Survivors/Caregivers

HOPE TBI

MUSIC by Survivors/Caregivers

Hope Survives – Cristabelle Braden

Into The Free – Lori Conti

Invisible – by Scottish Head Injury Music Support Group

Just Can’t Move On – Adrian Torbenson

Post Concussionist – A song about Traumatic Brain Injury – Vera Quijano

We’re Gonna Make It – Brain Injury Awareness Music Video – Cristabelle Braden

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[Review Article] Rehabilitation Technology: Assistance from Hospital to Home – Full Text

Abstract

Rehabilitation is essential for disabled people to achieve the highest level of functional independence, reducing or preventing impairments. Nonetheless, this process can be long and expensive. This fact together with the ageing phenomenon has become a critical issue for both clinicians and patients. In this sense, technological solutions may be beneficial since they reduce the costs and increase the number of patients per caregiver, which makes them more accessible. In addition, they provide access to rehabilitation services for those facing physical, financial, and/or attitudinal barriers. This paper presents the state of the art of the assistive rehabilitation technologies for different recovery methods starting from in-person sessions to complementary at-home activities.

1. Introduction

According to the World Health Organization (WHO), about 15% of the world’s population suffers some form of disability. Due to the ageing phenomenon and the prevalence of chronic diseases such as epilepsy, cancer, or mental health disorders, this percentage has incessantly increased. This fact leads to a growing demand for rehabilitation services since they play an important role in enhancing functioning, reinforcing the person’s autonomy, and improving the patient’s quality of life [12]. This demand far exceeds availability in terms of rehabilitation professionals (i.e., occupational therapists, physiotherapists, and speech therapists) such that the density of those professionals is greatly below the threshold required for providing adequate services (approximately a tenth of that required) [34]. Additionally, different barriers like low-income deny the access to the rehabilitation services required to live in health, comfort, and dignity. These deficiencies could be overcome with technology, reducing the need for formal support services, the time and physical burden for caregivers, and, consequently, their cost [56].

In this context, the key to technology success depends on its functionality and adaptability to the user’s needs and environment. However, rehabilitation is a broad concept covering a wide range of responses to disability. Generally speaking, rehabilitation can be defined as the step-by-step process designed to reduce disability and to optimise functioning in individuals with health conditions, enabling them to better interact with their environment. For that, rehabilitation commonly includes three aspects:(i)Physical, to regain strength, mobility, and fitness(ii)Occupational, to relearn the person’s daily activities(iii)Speech-language, to recover communication skills (i.e., speaking, understanding, reading, or writing)

The duration of the rehabilitation can vary depending on several factors such as the patient’s impairment level, the therapy intensity, or the individual activity and participation. For that reason, new ways without compromising patient wellbeing have been proposed. So, three different modalities can be found in the literature: (1) the in-person rehabilitation, where patients performs their program in presence of a therapist in an inpatient facility; (2) the combined in-person and at-home rehabilitation, where in-person rehabilitation takes place in an outpatient facility and is aided with at-home programs such that patients perform some therapeutic exercises prescribed by the clinician at home; and (3) the at-home rehabilitation, suitable for those requiring minor assistance or support, where a tailored therapy takes place entirely at home.

Focusing on the individual’s functioning, the technological solutions developed up to date have mainly aimed to physical recovery since mobility plays a main role in the independence and confidence of disabled people. More recently, research in occupational rehabilitation has emerged in response to Alzheimer’s disease and neurocognitive impairments.

This paper addresses the state-of-the-art assistive technologies for rehabilitation from the hospital to in-home programs. Despite its great importance in disabled people recovery, devices designed to replace the impaired limb (e.g., prosthetics and artificial limbs [78910] or smart wheelchairs [111213]) are not covered in this work.

2. In-Person Rehabilitation

One application of technology can be found as a support tool in the rehabilitation process. They help clinicians evaluate quantitatively the patient’s performance and progress while providing consistent training, specially for extended periods of time. This results in an increase in therapy access and a health-care cost reduction.

In this sense, Robotics has met this demand with a wide range of assistive products. For example, Andago [14] is a tool for overground gait training, bridging the gap between treadmill-based and free walking. With this technology, the patient’s fear of falling is considerably reduced while therapists focus on the therapy since they do not have to secure the patient. In a similar way, the G-EO System [15] assists therapists in patient’s motor recovery and, more specifically, in teaching patients walking again. Unlike the previous system, G-EO moves the patient’s legs when necessary to help the patient’s brain form new neuroplasticity pathways to replace the ones damaged by injury or disease. Kim and Deshpande presented in [16] HARMONY an upper-body robotic exoskeleton for rehabilitation. This exoskeleton provides natural coordinated motions on the shoulder for patients suffering from spinal and neurological injuries, including a wide range of motion and controllability of force and impedance. Several devices have been also developed for hand rehabilitation (e.g., [17181920]).

Although these robotic devices aid therapists in providing effective repetitive training and quantitative evaluation of patient’s progress, it is necessary to integrate any mechanism that makes rehabilitative exercises fun, challenging, and engaging. In this context, virtual reality (VR) and video game can fill the gap. That is, computer-based programs designed to simulate real-life objects and events in an attractive environment may engage patients to stage on track. In fact, the use of this kind of systems has been shown to be an effective mean for rehabilitation treatments since they offer clinicians the ability to control and grade tasks to challenge the user while providing them with an enriched environment to achieve high user’s engagement [2122].

From this starting point, a treadmill can be combined with VR technology. This is the case of C-Mill [23], a treadmill developed to train and assess patient’s gait and balance for a safe daily walk. It comes in three models: C-Mill, C-Mill VR, and C-Mill VR+ (Figure 1). Although he VR and VR + models use VR elements to stimulate and challenge patients, their final goal is different. That is, the C-Mill VR is aimed at training automated movements and dual tasking, whilst the C-Mill VR+ is a comprehensive solution for early to late rehabilitation with balance and body weight support.[…]

 

Continue —> Rehabilitation Technology: Assistance from Hospital to Home

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[BLOG POST] Intentional Living After TBI – Brain Injury Blog

Intentional Living After TBI

Finding your way after a stroke, ABI, MBI, TBI, Concussion, and related conditions is uncharted territory in every sense of the word. Intentional living not only defines the attitude that will help you work toward improvement, it also defines how you will continue to live going forward.

For every case that takes a definitive route, and a measurable outcome, others can spend a lifetime making even a portion of headway that others may achieve.

When anyone claims to know the way, it’s only because that’s the way that works for them. There’s no other way to say it. Rehabilitation after a TBI (no matter what variety) is always on a case-by-case basis, with progress being made according to many variables and factors.

Cognitive rehabilitation should be left to professional clinicians, and follow-up cognitive growth can be an independent venture – and best if applied in line with your doctor’s overall plan. I’ll be excerpting some information from the book “Brain Injury – It is a Journey” that is an excellent resource for families of TBI survivors that are helping someone they love to begin their journey.

*In the book, there are tons of resources, but one of the most poignant points are in these simple checklists:

Changes After Brain Injury

Changes in a person after a brain injury depend on which areas of the brain are affected and the severity of the injury. Use these lists to check mark affected areas.

These will change over time as the person progresses. Possible consequences of a brain injury includes:

Physical consequences

– Headaches

– Seizures

– Muscle spasticity

– Weakness or paralysis

– Balance and coordination difficulties

– Changes in vision or hearing

– Loss of smell or taste

– Difficulty swallowing

– Changes in appetite

– Increased sensitivity to smells, light or sound

– Changes in sensitivity to touch

– Fatigue, increased need for sleep

– Changes in sleep patterns

 

Cognitive (thinking and learning) consequences

– Amnesia

– Short-term memory loss

– Long-term memory loss

– Slowed ability to process information

– Difficulty organizing and planning ahead

– Poor judgment

– Inability to do more than one thing at a time

– Lack of initiating or starting activities

– Easily distracted

– Disoriented or confused to surroundings

– Shorter attention span

– Repeatedly says or thinks same thing

 

Communication consequences

– Slurred or unclear speech

– Difficulty finding the right word

– Difficulty staying on topic

– Trouble listening

– Dominating conversations

– Difficulty reading

– Rate of speech too fast or too slow

– Things taken too literally

– Difficulty understanding what is said

 

Emotional/Behavioral consequences

– Increased anxiety

– Depression

– Self centered behavior or thinking

– Easily irritated, angered or frustrated

– Overreacts, cries or laughs too easily

– Different sexual behavior

– Impulsive, acts or talks without thinking

– Mood swings

– Stubbornness

– Dependent or clinging behavior*

[…]

more —>  Intentional Living After TBI – Brain Injury Blog With Free TBI Information

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[Abstract] Acceptance of Tele-Rehabilitation by Stroke Patients: Perceived Barriers and Facilitators

Abstract

Objective

To explore the perceived barriers and facilitators of tele-rehabilitation (TR) by stroke patients, caregivers and rehabilitation therapists in an Asian setting.

Design

Qualitative study involving semi-structured in-depth interviews and focus group discussions.

Setting

General community.

Participants

Participants (N=37) including stroke patients, their caregivers, and tele-therapists selected by purposive sampling.

Interventions

Singapore Tele-technology Aided Rehabilitation in Stroke trial.

Main Outcome Measures

Perceived barriers and facilitators for TR uptake, as reported by patients, their caregivers, and tele-therapists.

Results

Thematic analysis was used to inductively identify the following themes: facilitators identified by patients were affordability and accessibility; by tele-therapists, was filling a service gap and common to both was unexpected benefits such as detection of uncontrolled hypertension. Barriers identified by patients were equipment setup–related difficulties and limited scope of exercises; barriers identified by tele-therapists were patient assessments, interface problems and limited scope of exercises; and common to both were connectivity barriers. Patient characteristics like age, stroke severity, caregiver support, and cultural influence modified patient perceptions and choice of rehabilitation.

Conclusions

Patient attributes and context are significant determinants in adoption and compliance of stroke patients to technology driven interventions like TR. Policy recommendations from our work are inclusion of introductory videos in TR programs, provision of technical support to older patients, longer FaceTime sessions as re-enforcement for severely disabled stroke patients, and training of tele-therapists in assessment methods suitable for virtual platforms.

via Acceptance of Tele-Rehabilitation by Stroke Patients: Perceived Barriers and Facilitators – Archives of Physical Medicine and Rehabilitation

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[Factsheet] Understanding TBI: Part 4 – The Impact of a Recent TBI on Family Members and What They Can Do To Help With Recovery – Model Systems Knowledge Translation Center (MSKTC)

Written by Thomas Novack, PhD and Tamara Bushnik, PhD in collaboration with the MSKTC

How does brain injury affect family members?

For most family members, life is not the same after TBI. We want you to know that you are not alone in what you are feeling. While everyone’s situation is a bit different, there are some common problems that many family members experience such as less time for yourself, financial difficulties, role changes of family members, problems with communication, and lack of support from other family members and friends. These are just some of the problems that family members may face after injury. Sometimes these problems can seem too much and you may become overwhelmed, not seeing any way out. Family members have commonly reported feeling sad, anxious, angry, guilty, and frustrated.

Ways to reduce stress

Since the injury, you have likely been under a great deal of stress. A little stress is part of life, but stress that goes on for a long time can have a negative effect on the mind and body.

Stress is related to medical problems such as heart disease, cancer, and stroke.

  • Stress can make you do things less well because it affects your ability to concentrate, to be organized, and to think clearly.
  • Stress also has a negative effect on your relationships with other people because it makes you irritable, less patient, and more likely to lash out at others.
  • Stress can lead to depression and/or anxiety.

If you are under constant stress, you are not going to be as helpful to your injured family member or anyone else. If you do not take the time to rest and care for yourself, you will get fewer things done, which will lead to more stress. If you won’t do this for yourself, do it for your injured family member. They will be better off if you are healthy and rested. Here are some suggestions for ways to reduce stress and stay healthy. These things have worked for many people, but not all of them may work for you. The important thing is that you begin thinking about ways to improve your life.

Learn to relax

Taking a few moments to relax can help you be more ready for the things you need to do. Learning to relax is not easy, especially in your current situation. There are relaxation techniques that can help you such as breathing deeply and focusing on your breathing, stating a word or phrase that has positive meaning (e.g. peace), or visual imagery. In order to train your body and mind to relax, you need to practice often. Don’t give up if it doesn’t work right away. If you keep practicing these techniques, you will feel more relaxed in the long run, and you will find that you’re able to function better in all areas of your life.

Learn which coping strategies work for you

No matter what was going on in your life before, the injury has caused changes. You may never have experienced anything similar to the injury, and some of your usual coping strategies may not work in your current situation. The best thing that you can do for yourself is to be open to trying new ways of coping and find out what works for you.

Some coping strategies that others have found helpful:

  • Taking time for yourself
  • Keeping a regular schedule for yourself
  • Getting regular exercise such as taking a 20-30 minute walk each day
  • Participating in support groups
  • Maintaining a sense of humor
  • Being more assertive about getting the support you need
  • Changing roles and responsibilities within the family

Learn how to reward yourself

Everyone needs something to look forward to. You’ll probably say, “I have no time; it’s impossible.” Just remember that you will be more ready to do the things you have to do if you take some time to do some things that you want to do. Even if you have very limited time, you can find some small way to reward yourself. Promise yourself a cup of your favorite coffee or an opportunity to watch a good TV show or read something you enjoy.

Problem-solving for caregivers

Sometimes you may feel overwhelmed by problems. There may be so many problems that you’re not sure which one to tackle first. You can only solve one problem at a time, so pick one. Use the problem solving steps below to find a good solution. Try to choose a smaller problem to solve first. This will give you practice and make you more confident about solving bigger problems. If you deal with problems in this way, they may seem easier to handle.

Steps in Problem Solving

  1. Identify the problem: What is the problem? Define it as clearly and specifically as possible. Remember that you can only solve one problem at a time.
  2. Brainstorm solutions: What can be done? Think of as many things as you can. Don’t worry about whether they sound silly or realistic. This is the time to think about all possibilities, even the ones that you don’t think will happen. Be creative.
  3. Evaluate the alternatives: Now you will start thinking about the consequences of the ideas you came up with in Step 2. For each idea, make a list of positives on one side of the page and a list of negatives on the other side.
  4. Choose a solution: Pick the solution with the best consequences based on your list of positives and negatives. Keep in mind that more positives than negatives is not always the best rule. Sometimes you will have one negative that outweighs many positives.
  5. Try the solution: Try out the idea you have chosen. Give it more than one chance to work. If it doesn’t work right away, try to figure out why. Was there some consequence you didn’t think of? Is there another problem in the way that could be easily solved?
  6. If your first solution doesn’t work, try another one: Don’t give up. Everything doesn’t always work out the first time. You can learn from your mistakes; they may help you to choose a better solution next time.

Ways family members can help the injured person

The treatment team can provide you with guidance in how to help the person while not giving them too much or too little assistance. Attending therapy when possible and working with the therapists and nurses are the best ways to learn to help the person before discharge from the hospital.

The following recommendations are intended to help families and caregivers care for their loved one once they have returned home. Not all of the following recommendation may apply to your situation.

Provide structure and normalcy to daily life

  • Establish and maintain a daily routine – this helps the person feel more secure in their environment.
  • Place objects the person needs within easy reach.
  • Have the person rest frequently. Don’t let the person get fatigued.
  • Be natural with the person and help them to maintain their former status in the family.
    Communication is important to the person’s recovery. Although they may not be able to speak, they should continue to be involved in as normal a social world as possible.
  • Include the person in family activities and conversations.
  • Keep a calendar of activities visible on the wall. Cross off days as they pass.
  • Maintain a photo album with labeled pictures
    of family members, friends, and familiar places.

Provide support in a respectful way

  • Try not to overwhelm the person with false optimism by saying statements like “You will be alright” or “You will be back to work in no time.
  • Point out every gain the person has made since the onset of the injury. Avoid comparing speech, language or physical abilities prior to the injury with how they are now. Look ahead and help the person to do the same.
  • Treat the person as an adult by not talking down to them.
  • Respect the person’s likes and dislikes regarding food, dress, entertainment, music, etc.
  • Avoid making the person feel guilty for mistakes and accidents such as spilling something.
  • If the person has memory problems, explain an activity as simply as possible before you begin. Then as you do the activity, review with the person each step in more detail.

Avoid over-stimulation –

Agitation can be heightened by too much activity and stimulation.

  • Restrict the number of visitors (1 or 2 at a time).
  • Not more than one person should speak at a time.
  • Use short sentences and simple words.
  • Present only one thought or command at a time and provide extra response time.
  • Use a calm, soft voice when speaking with the person.
  • Keep stimulation to one sense (hearing, visual or touch) at a time.
  • Avoid crowded places such as shopping malls and stadiums.

Safety Tips

The person who has confusion or impaired judgment may be unable to remember where dangers lie or to judge what is dangerous (stairs, stoves, medications). Fatigue and inability to make the body do what one wants can lead to injury. Therefore it is very important that a brain injured person live in an environment that has been made as safe as possible. The following are some safety guidelines to use in the home:

  • Keep clutter out of the hallway and off stairs or anywhere the person is likely to walk. Remove small rugs that could cause tripping or falls.
  • Remove breakables and dangerous objects (matches, knives, and guns).
  • Keep medications in a locked cabinet or drawer.
  • Get the doctor’s consent before giving the person over-the-counter medication.
  • Limit access to potentially dangerous areas (bathrooms, basement) by locking doors if the person tends to wander. Have the person wear an identification bracelet in case he or she wanders outside.
  • Keep the person’s bed low. If they fall out of the bed, you may want to place the mattress
    on the floor or install side rails.
  • Make sure rooms are well lit, especially in the evening. Night-lights can help prevent falls.
  • Have someone stay with the person who is severely confused or agitated.
  • Keep exit doors locked. Consider some type of exit alarm, such as a bell attached to the door.
  • Consider a mat alarm under a bedside rug to alert others if the person gets up during the night.

Things that can be more dangerous after a TBI and should be resumed only after consulting a health care professional: contact sports, horseback riding, swimming, hunting or access to firearms, power tools or sharp objects, riding recreational vehicles, and cooking without supervision.

Individuals with brain injury should receive permission from a health care professional prior to using alcohol or other substances at any point after their injury. Also, NO DRIVING until approved by your doctor.

Disclaimer

This information is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment.

Source

Our health information content is based on research evidence whenever available and represents the consensus of expert opinion of the TBI Model Systems directors.

Our health information content is based on research evidence and/or professional consensus and has been reviewed and approved by an editorial team of experts from the TBI Model Systems.

Authorship

Understanding TBI was developed by Thomas Novack, PhD and Tamara Bushnik, PhD in collaboration with the Model System Knowledge Translation Center. Portions of this document were adapted from materials developed by the Mayo Clinic TBIMS, Baylor Institute for Rehabilitation, and from Picking up the pieces after TBI: A guide for Family Members, by Angelle M. Sander, PhD, Baylor College of Medicine (2002).

via Understanding TBI: Part 4 – The Impact of a Recent TBI on Family Members and What They Can Do To Help With Recovery | Model Systems Knowledge Translation Center (MSKTC)

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[BLOG POST] Basic Survival Guide For Caregivers – H.O.P.E TBI

Before you take your loved one home from the hospital or care facility, there are things you can do in advance to help prepare them for their transition home, and prepare YOU for one of the most important roles in your life.   Absolutely, if at all possible, spend a full few days and nights following your loved one through their routines so you can see what they are actually capable of, what their routines are, and what may be expected of you as their caregiver at home. Know that you will be burning your candle at both ends for an undetermined amount of time.

It will be important to create a notebook, binder, or file with important information that will be available to you without a lot of stress and searching.  It may even be helpful to purchase a Planner that includes daily and monthly pages to include everything on. Make a typed or written list of the following:

  • Medications needed and schedule of medications (what gets taken when)
  • Names and numbers of providers to call with questions, appointment scheduling, or emergencies
  • If your loved one has a traumatic brain injury, the name and number of the Brain Injury Association for your area, support groups available, their hours and location.
  • Write down ALL questions as you think of them.  You may have every intention of remembering them.  However, I promise you – you will remember these questions at the most inopportune times if you don’t have them written down.
  • Purchase one or more “white boards” with dry erase markers to hang up at home.  These are very handy for keeping track of all kinds of things.
  • Have a documented list of all medical equipment, supplies, toiletries, and assistive devices you may need at home for your loved one, BEFORE you bring your loved one home.  Keep in mind there will ALWAYS be something you didn’t think of at the time, learn about after the fact, or discover in your advocacy for your loved one. That’s okay, don’t be hard on yourself.
  • Have a support system in place for yourself.  Counselor, social worker, therapist, other family members willing to help, home health agency, medical case manager, etc.   Keeping yourself healthy first, will allow you to do your very best for your loved one.

So your loved one is ready to come home from the hospital.  You may feel excited, nervous, impatient, and mostly prepared.  Nothing can prepare you for all the dynamics and changes you are about to take on, other than first hand experience.  Structure is imperative.  Especially if your loved one has a traumatic brain injury. The first two weeks home will most likely be the toughest to adjust to.  Don’t get caught up in the idea that they need a “break” and no routines, schedules, or therapies.  Recovery is enhanced with structure and consistency.

You may have realized by the end of the first week that you are feeling exhausted and scattered. You may feel like maybe you weren’t ready to take this on at all.  Who is this person you brought home?  They are so different. They may be painful, irritable, demanding, and impatient. It may be hard not to take this personally.  Your time is no longer your own and you are now responsible for every aspect of this person’s safety, health, and recovery process. You may become so focused on what you should be doing next to help with all the things that need to be done that you cannot sleep or slow down your thoughts. You may be feeling like you cannot do anything right….or perhaps you realize you are doing everything right, yet your loved one is not responding in the way you were anticipating they would.  You may find yourself tiptoeing around them, being cautious of everything as each hurdle presents itself.

caregiverstrain

By the end of the second week, you are fully aware of the time commitment that is involved now.  You may be losing track of time as your days now seem to run together. You may now be thinking of a thousand things you should have asked, learned about, or prepared for BEFORE your loved one came home. You may be feeling a bit overwhelmed and may even realize that you are not able to do EVERYTHING on your own.   It’s okay, you are not alone in this realization.  You also may actually be getting a better grasp of the schedule that is going to work the best for you to survive being a caregiver, while helping your loved one progress through their recovery at this point. You will most likely be beyond exhausted and unsure how you are going to be available to your loved one and still meet the demands, responsibilities, and obligations in your own life – that exist outside of your new caregiver role.

Your loved one has gotten used to certain schedules, expectations, routines,  push to be independent and compelled to focus on their recovery  in the hospital or rehab facility and will come home expecting those same things to be in place at home.  They may feel distant, resistant, challenging, and develop unrealistic expectations about what you are able to accomplish for them both directly and indirectly.   caregiverandworkstress

Sometimes your loved one, if they have a traumatic brain injury, may have a skewed view of reality.  They may have mood changes you are not used to dealing with, have difficulty adjusting to their “new normal”, and may have difficulty accepting the changes they are now facing every moment of every day.  You may be having difficulty adjusting to the expansive and growing list of needs and accommodations they now require.

You may have become overprotective at this point. You may be able to anticipate your loved one’s needs before they even ask for it.  You may micromanage every aspect of their day.  You may also be doing things for them, that they are able to do for themselves with a little supervision or prodding. This is not not good for your loved one in the long term to have you doing EVERYTHING for them.  It is imperative that you encourage independence as much as possible.  Help them with what they need help with, of course.  However, encourage them to do as much on their own as possible.  This will take them out of their newfound “comfort zone” and will not always be successful in the first attempt. HH_SEO_Graphics_CBDon’t get angry if they attempt something and do not succeed, or if they are unable to complete something they have attempted. This effort may takes weeks, months, and in some cases years of consistent attempts for this to happen succesfully.  For some caregivers, there is no mastering this aspect of the caregiving process.  You may have a loved one who is incapable of independence.  In that situation, set small goals for yourself, for them, and partner with providers to celebrate even the littlest victories or accomplishments.  Sometimes just getting up for the day, getting bathed and dressed for the day is the best that can be accomplished that day.

It is imperative to eventually include your loved one in as many life activities as is possible.  They may not be ready for this in the first few weeks home. Consider trying to take them on very brief, small outings with you a little at a time.  Even if just to a convenience store and then back home, the library and back home.  Perhaps even just a ride around the block after getting dressed for the day can be a huge accomplishment.  You can build to other places, longer times, and more challenging things as time progresses and they are ready.  Some things to consider when leaving the house with your loved one:

  • Have a “travel bag” ready to go with you on each trip that includes their medications,  a change of clothing (maybe two changes of clothing), items that help them cope, and notebook (with pen or pencils and higlighters in different colors)
  • Have something for them to drink with you (bottled water, thermos, juice box, etc)
  • Carry ear plugs, headphones, sunglasses, lap blanket, and any other things that may help your loved one when they are away from home based on their personal needs.
  • Allow tons of extra time for getting ready to leave the house with your loved one.  Allow extra time to make it to appointments on time.  I would suggest at least an hour wiggle room. Folks with traumatic brain injuries have a real challenge with being rushed, given too many tasks at once, or last minute changes.  Even though they may make many last minute changes in their level of participation, effort, and coping ability.
  • Be prepared to turn around and go home.  You loved one may have a meltdown, panic attack, behavioral outburst you are unable to manage safely away from home, or they may feel “flooded”or voice their desire to be home NOW.  Sometimes, when they have a medical appointment, going home is not a possibility until after the appointment.  Often times, going to a medical appointment will be the only outing they can do that day.

compassionfatigueThe largest part of recovery will take place within the first two years.  However, this is not where recovery ends. Research continues to show that healing, strength, behavior, body changes, and rerouting of the brain continues – even years later.

It is common to feel sad, depressed, or disappointed if your loved one has not reached the recovery level you anticipated at the one or two year mark in their recovery.  Your loved one also may be having some struggles around this time as well.  They may have expected to be further along in their own recovery, or reliving the time of year their accident happened and comparing it to their life before their injuries.  Families often misjudge the amount of time it will take for their loved one to recover or plateau ; especially if their obvious physical injuries/fractures have healed by this time and you are unable to “see” the traumatic brain injury.

tbisurvivorcaregiver

 

[Potential Providers may include the following:  physicians, physiatrist, nurses, physical therapists, occupational therapists, speech therapists, recreational therapists, respiratory therapists, counselors, psychologists, neuropsychologist, social worker, specialists, nurse’s aids, home health aids, medical case manager, family caregivers, volunteers, and/or clergy.]

~Compiled By: Caren Robinson

 

via Basic Survival Guide For Caregivers | H.O.P.E TBI

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[BLOG POST] Brain Injury Was Never The Plan!

Having a Brain Injury Was Never the Plan!

By Barbara Webster and The Amazing Framingham Brain Injury Survivor Support Group of The Brain Injury Assoc. of Massachusetts

I never thought . . .

It would be so hard to find the right medical care.

Life could change so easily and so drastically from an “invisible” injury.

A brain injury could result from cancer treatments.

It would take so long and be so difficult.

People would treat me differently.

One can “look great” but be a total disaster inside.

Everything, even doing the simplest things, would be so hard.

My professional career would end.

I would be so miserable without my career.

I’d lose control of my income at such an early age.

The losses would penetrate every area of my life.

I’d change unintentionally.

I wouldn’t be able to think.

I would face a different me.

I’d be unable to depend on myself consistently.

I’d have a hard time expressing myself or understanding what was said.

I’d lose control of my emotions, laugh or cry spontaneously.

I could lose control and become a “Tazmanian Devil”, without warning.

I’d lose the ability to do the things I’m passionate about.

I’d cling to some basic abilities, like driving.

I’d lose the ability to enjoy to social events.

It would affect my marriage.

My family wouldn’t understand.

I’d lose “friends”.

Life would never be like it was.

I could feel like I was going crazy, hopeless and want to die.

I would have to create a new “self”.

I’d find such great joy in accomplishing the simplest things.

 

 I wish I’d known . . .

There was help for people like me much earlier.

There would be so many others like me.

How much progress I could make.

That I would feel better, eventually.

I’d find many alternate ways to get through the days.

How strong I could be.

I’d be able to laugh again.

I’d be accepted once again.

I could forgive myself.

A brain injury could ultimately change the course of my life for the better in many ways.

We invite you to add your thoughts . . .

 

If you like this piece you might also like: “What Brain Injury Survivors Want You to Know”, featured in Barbara’s book: Lost and Found, a Survivor’s Guide for Reconstructing Life After a Brain Injury, Lash Publishing and on brainline.org.

via Brain Injury Was Never The Plan! An insightful blog about surviving a TBI

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[BLOG POST] One day at a time. Cognition and Caregiving after a TBI

By Bill Herrin

Thinking comes so naturally that most people take it for granted, but after a traumatic brain injury – many times, thinking can be more of a deliberate action. It takes focus and effort to put a series of thoughts together after TBI, to speak clearly, or to even move. Simply put, the brain (like the body) takes time to heal. Since no two brain injuries are identical, there is no clear path to better cognition. There are, however, certain broad directives that can get you moving in the right direction in most situations. The hardest part of this is to accept your “new normal”. Acceptance, once you come to terms with it, gives you the desire to work toward the goal of better cognition, coordination, memory, anger management, judgement, attention, and other challenges. Once you accept your situation isn’t going to change overnight, you can start the process of healing, along with testing your limitations. Although finding your limitations is difficult, knowing what they are is a huge step towards improvement in areas that need changing. When a person lacks enough cognition to be self-aware or to strive towards improvement, that’s a test for the caregiver’s guidance and patience. Sometimes just being there for your friend, spouse, or loved one is all you can do.

As a caregiver, high expectations from a TBI survivor shouldn’t be overly discouraged, as they can bring progress through their desire to improve. They may not reach the goal they wanted to, but they’ll make strides towards it! That is positivity in its purest form. Nobody wants to be working through such a huge change in their life without encouragement – cheer them onward and upward! Even if they fail, they are trying, and that shows initiative. Their desire to improve should never be underappreciated.

When cognition is in the early stages of improvement, the changes may be noticed more by the family or caregiver than they are by the survivor. Sometimes incremental change is just too subtle for survivors to realize, but pointing out the changes to them is incredibly positive reinforcement. The following tips on cognition are excerpted from Lash & Associates’ tip card titled “Cognition – Compensatory strategies after brain injury”

Cognitive fatigue is one of the most common consequences of brain injury. The survivor’s brain is simply working harder to think and learn. Cognitive rest is just as important – maybe even more important – as physical rest after the brain has been injured. Cognitive fatigue can have a ripple effect. You may have a shorter temper, find it harder to concentrate, make more errors, misplace things or forget appointments. You may feel like you can’t think straight no matter how hard you try. Many survivors describe cognitive fatigue as “hitting the wall”.

Do you…

• Feel tired after mental exertion?

• Have a harder time thinking after working on longer or more complex tasks?

• Need more sleep than usual?

• Find it hard to get through the day without napping?

Tips on compensatory strategies…

• Take breaks.

• Schedule rest periods.

• Stay organized.

• Use a daily planner.

• Use time management strategies.

• Eat nutritious meals on a regular schedule.

• Go to bed at a consistent time.

– Create a weekly exercise routine.

• Request a medical evaluation.

• Discuss medications that may help with a physician specializing in brain injury rehabilitation.

There are a plenty of great suggestions for compensatory strategies for survivors and their caregivers in the tip card referenced above. Here’s a link to it here!

When it comes to cognitive functional rehabilitation – seek professional advice first (of course), but when the TBI survivor is at home with a caregiver, clinician, friend or family member, there are some great approaches to working on communication, social interaction, organization, reading, attention, problem solving, and rebuilding other deficits through consistent application by any or all of the people involved in the care of the TBI survivor.

Referencing the book titled “Cognition Functional Rehabilitation Activities Manual” (Developed by Barbara Messenger, MEd, ABDA and Niki Ziarnek, MS, CCC-SLP/L), I’m sharing an excerpt that provides a glimpse into the workbook’s approach to helping a person with cognitive challenges. Many of the exercises use interaction and documentation to assess where the TBI survivor is at (cognitively speaking) on an ongoing basis. Remember, this is a workbook, and there are plenty of exercises that build activities and responses ongoing. Here is the example of how the manual challenges a TBI survivor with structured and specific activities:

Task: Provide awareness training.

Procedure:

  1. Prompt participant to work on awareness training.
  2. Ask why participant is here receiving rehabilitation.
  3. Ask what skills/activities are harder since the brain injury.
  4. Ask what participant does to compensate for these difficulties and which therapies address them.Ask what participant’s strengths are (what is participant good at?).
  1. Ask the participant how the brain injury and difficulties affect daily activities.
  2. Provide answers and examples when needed.
  3. Provide positive reinforcement for strengths, being receptive to information regarding brain injury, for participating in the task, and for being motivated to participate in rehabilitation.

Staff Reminder: (clinician, caregivers, family, etc.)

Provide a complete description of this activity in the Functional Rehabilitation Documentation Form.

Last words…

By asking specific questions, and recording the corresponding answers, this workbook is a great tool for tracking progress – and the exercises can be done more than once, to check and see how/if the answers have changed. So, what’s the takeaway from this excerpt? It illustrates that structure and consistency of care and treatment by family/caregivers and professionals can overlap and create a solid overview of cognitive deficits, and improvements.

In closing, the main goal of this post is to address the expectations of TBI survivors and their caregivers, to encourage them to strive for progress and to offer resources for compensatory strategies, and cognitive rehabilitation. If all parties work in tandem with the common goal of helping a TBI survivor make it to the next level, they’re all closer to the goal…and the whole team wins. That’s the goal!

 

via cognition-caregiving-tbi

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[BLOG POST] Recovery After Stroke: 15 Tricks to Recover Faster

Recovery After Stroke

The process of stroke recovery is a long one. It takes hard work and dedication to regain full function. There are no quick-fixes that can make stroke recovery happen overnight; however, certain strategies can help you speed up the process. Curious? Below, we offer a few ways to rise above stroke-driven challenges and fasten the stroke recovery.

  1. Focus on a reason for stroke recovery (such as getting back to work, being able to peruse things you enjoy) and to associate it with your plan of action. This will give you motivational support at all times.
  1. Exercise regularly. To maintain that, set specific and meaningful goals to keep you focused. Take a sheet of paper and write down 3 or more concrete goals (and deadlines to achieve them by), the consequences of not achieving them and the desired benefit/outcome.
  1. Start with passive exercises to rewire the brain and fasten the recovery. This simply means using your non-affected muscles to move your affected muscles. Though you are not “doing it on your own”, you are still rewiring your brain.
  1. Include additional arm support during rehab exercises to avoid the arms becoming weaker due to learned non-use*.
  1. Consistently repeat the exercises and stretches to strengthen the brain-muscle connections. This will activate neuroplasticity to the maximum, and you will see results faster.
  1. Be proactive about working around fatigue, which can drain you physically and mentally. Take time to squeeze in a nap or rest as often as possible to combat the constant drowsiness and return to pre-stroke energy levels.
  1. To combat foot drop after stroke, use assistive equipment (such as foot drop brace) as an aid in rehabilitation. Low-impact strength and stretching leg exercises are good complement to use.
  1. If stroke has left you with “curled toes”, regain strength and movement with a variety of exercises. Include toe taps, floor grips, finger squeezes, and toe-extensor strengthening to make a huge difference in stroke recovery.
  1. Mirror therapy gives neuroplasticity a boost. Place a mirror over your paralyzed limb to ‘trick’ your brain into thinking that you’re moving your affected muscles when it’s merely just a reflection.
  1. Visualize your paralyzed muscles moving – again a great way to activate neuroplasticity. This works in your favor when you combine mental practice with physical practice. Spend time both visualizing your arm moving and doing passive arm exercises (to regain movement in a paralyzed arm).
  1. Stay stress free whenever possible. When stress begins to take hold, cortisol (a hormone) floods the body, causing pH levels to become imbalanced with acidity. This can ultimately weaken your immune system. Eating a natural probiotic like yogurt, practicing yoga and deep breathing can limit cortisol levels, sustaining your body for speedy stroke recovery.
  1. Depression after stroke often slows the recovery process and sometimes intervenes as a roadblock. Talk to your doctor if you are experiencing any symptoms, to get them treated with prescription antidepressants or therapy. Eat healthy food for improved mental health.
  1. Watch out for the recovery plateau stage. Here are 6 ways to get past Plateau after stroke.
  1. Understand and combat memory loss after stroke. Incorporate technology into daily rehab exercises to show quick improvements. Use smartphones to set reminders, schedule appointments, and overseeing your functional performance.
  1. Sleep at least 7 hours a night, and more when you need it. It will help you fasten movement recovery by turning the short-term memory from the day’s rehab exercises into long-term memory.

via Recovery After Stroke: 15 Tricks to Recover Faster – 9zest

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