Posts Tagged Caregiver

[WEB SITE] Mindfulness Meditation for Caregivers

Everybody needs a break — kids need recess, workers take coffee breaks, judges adjourn. But too often family caregivers don’t take breaks. ‘How can I,’ they reason, ‘when I’ve got a to-do list that’s 27 hours long!’ Which makes the need for a break all the more important.

Here’s a very simple suggestion for how to take a break — try meditation. I make this suggestion not as a magazine editor, but as someone who has taught meditation for 20 years and witnessed its beneficial effect on many people. For this article, I also talked to a psychologist and a psychotherapist who have written books on mindfulness meditation specifically for family caregivers.

There are a number of small studies that have examined the potential benefits of meditation for family caregivers of patients with varying conditions such as dementia, cancer and other chronic conditions. They typically found meditation had a beneficial effect on depression, insomnia, stress and caregiver burden. In addition to these caregiver-specific examinations, according to the National Center for Complementary and Integrative Health (NCCIH) website, there is evidence that meditation may have a positive effect on blood pressure, pain and other conditions. NCCIH also offers information about the safety and side effects of meditation.

Time & Attitude

Lack of time is the first objection caregivers have to taking a break of any kind, much less a regular meditation practice. Here’s the flaw in that thinking — if you don’t take a break, you may break, and then who will take care of your loved one?

Nancy Kriseman

Psychotherapist Nancy Kriseman, author of The Mindful Caregiver: Finding Ease in the Caregiving Journey, often runs into this attitude in her work with caregivers: “I say to them, ‘You make the time for whoever you’re caring for. Why is it not important to make time for yourself?’” To illustrate the mindset, she outlines three distinctions — selfish, selfless and self-full. “Caregivers are generally not selfish,” she said. “In fact, they’re usually over-the-top selfless, doing everything and putting everybody in front of themselves. Self-full means that you step back and recognize what you can and can’t do and what other people might be able to help you do, so you can let go of your ‘should do’s’ for your survivor and make sure you put yourself in the mix. The self-full person declares, ‘I matter too.’ People confuse being self-full with being selfish, and nobody, particularly a caregiver, wants to be thought of as selfish.”

“Caregivers have a lot of emotional and physical stress, and they generally don’t take time for themselves, to reflect on their own experience,” said clinical psychologist Julia Mayer, Psy.D., co-author with her husband, clinical psychologist Barry Jacobs, Psy.D., of Meditations for Caregivers — Practical, Emotional and Spiritual Support for You and Your Family. “Mindfulness gives them access to their own feelings and makes them less likely to feel overwhelmed. It reduces anxiety and depression and increases feelings of resilience. It makes you more effective.”

Julia Mayer

If you are worried about the time, consider Mayer’s last point carefully — meditation makes you more effective. In other words, you get more done in less time. In my years teaching meditation, that was the universal experience of those who took up the practice of mindfulness. If you get more done in less time, meditation may be a time neutral, or possibly even a timesaving, experience.

But you have to make the time, no one is going to give it to you. You will have to put it on your to-do list and defend that time against other demands. Think of it as a gift you give yourself to improve yourself. “Carve out a little bit of time and then commit to practicing,” Kriseman said. “Start small, five minutes will do at first, but commit to actually sitting for five-minutes with your eyes closed. Take some deep breaths, and pay attention to your heart beat and how you’re feeling.”

What is Mindfulness?

“I like Jon Kabat-Zinn’s (a well-known meditation advocate) definition of mindfulness: clearing the mind of obtrusive thoughts,” Mayer said. “It’s a state of nonreactive awareness. I find that focusing on gratitude helps to create that nonreactive awareness. It gives the caregiver a perspective that this is a moment in time, and it will pass.”

Kriseman distinguishes between burning out and numbing out: “When you’re burned out, you basically realize you can’t go any longer; you’re at your wit’s end, and about to collapse, so you stop because you realize, ‘I can’t do this anymore,’” she said. “However, when you’re numbed out, you don’t realize how exhausted you are, and just keep on going, which can be very dangerous to caregivers’ health. Mindfulness is a way to help caregivers recognize when they’re getting to that numbed out place. Mindfulness can help them recognize where they are at any given moment in time. Mindfulness is self-awareness.”

Practice Isn’t Optional

Generally, when a person meditates, they feel better — more relaxed, less reactive. However, it is the practice of meditation, doing it every day, that brings the benefits itemized in the studies mentioned above — reducing depression, insomnia, stress and caregiver burden, while increasing resilience, confidence and self-control.

We all know the axiom “practice makes perfect,” and that works because of incremental improvement over time. In other words, every time you meditate, you get better at meditating. And that improvement is cumulative. At first, it changes how you react, but after a few months of daily meditation, most people become consistently calmer and more patient in their day-to-day experience.

There is another aspect to practice that we tend to forget: Practice isn’t optional; we are always practicing something. If you’re not practicing calmness every day, then by default you may be practicing getting stressed and upset. Which qualities best support you, your health — and your loved one?

There are many forms of meditation and countless techniques. At its most basic, meditation is changing your focus from the outside to the inside. Meditation practice is making that refocusing a part of your daily routine. It is a conditioning process, and the reinforcement is the relaxation you feel. The reward is self-awareness that will improve you.

Hold meditation lightly, don’t expect it to transform your life overnight. Over time, with practice, you will be less reactive and more resilient; you will become more present in your life. All of which will support you in the role of caring for your loved one.

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.

via Mindfulness Meditation for Caregivers – Stroke Connection Magazine – Fall 2016

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[QUOTATION] Being thrust into the role of caregiver…

Η εικόνα ίσως περιέχει: κείμενο

via TBI Caregivers & Supporters – Δημοσιεύσεις

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[BLOG POST] There’s always hope… Encouragement after TBI

By Bill Herrin

My dad would often tell me not to get discouraged, and as a young man, I didn’t understand why…sometimes it made me frustrated. What he knew (that I didn’t at the time) was that he was preparing me for discouraging times in my life. This was a part of his legacy as a dad, and he was laying the groundwork for doing his best to impart positivity and hope into my character…whatever may come! Not everyone has this kind of person in their lives, but many of us can be our own encouragers through positive self-talk, thoughts, prayers, and by being encouraging to others.

There’s no magical solution for encouragement – you start by taking a situation that you’re going through, and startdissecting it. By asking yourself “how bad is this, really?”, you start to see things for what they are. If your emotions cloud your outlook, you may give up the fight, or just become tired of working to keep things positive. Let’s face it – brain injuries of any kind are no “walk in the park.” For many, progress is slow, or even elusive. Finding some redeeming things in your life is the first step to realizing that there are also things to be thankful for, despite any other negative issues that have placed you in this “new normal”.

Let’s take a look at some ways that can be encouraging for you, a person that you may take care of (as a caregiver), or maybe just to encourage a loved one or spouse. Remember that every TBI is different, as well as every personality…there are no two situations that are exactly the same. The goal is to paint with a broad brush, and point to ways of encouragement that most likely will apply to most TBI survivors, and the challenge to you is to apply them appropriately to your situation! It’s never a “cut and dried’ kind of thing when you’re dealing with TBI, and unfortunately, there will be suggestions here that will absolutely not apply to some survivors at all. With that said, let’s plod ahead, and plot our path toward being more encouraged…or being more encouraging to someone else. Let’s find some inspiration!

  • Negativity can easily creep in, when there’s not enough progress after a TBI. Negative attitudes can be the norm, as people wear down when they’re dealing with pain, loss, stress, impulsive behavior, lack of motivation, poor self-awareness, and their overall recovery. For a caregiver, spouse, or family member, you can reinforce positive behavior on their part by maintaining your patience with them…stopping negative behavior by modeling patience and good behavior can be tough to maintain, but it can pay off by easing the overall household stress level. If you’re on working toward increasing positivity on your own (as a survivor), one of the main things to keep in mind is that change will be incremental. Implementing total change in one fell swoop is a daunting task, and will most likely lead to failure…and more negativity. Small steps toward your goal will not only give you confidence that positive change is occurring, but others will see it as well…you’ll know that you’re making progress, and others will reinforce that by seeing it as well. Change begins with you. That’s encouraging!
  • Finding joy in small things can be a stepping stone to other “wins” in your journey toward a more positive outlook after TBI. Let’s say, for example, that you’re having a hard time using a TV remote – the channel select button is hard to press when you’re holding the remote. Finding a workaround sounds simple enough, and if it can reduce your stress…then try doing something differently. In this case, maybe holding the remote with both hands. The point is that trying different ways to approach everyday (small) issues can build confidence and positivity. It will give you insight into building up to working on larger items on your list that you’d like to conquer…it’s always going to be one step at a time!
  • When feeling irritable or stressed out (which can be a huge problem after a TBI), strive to remember that lashing out at others creates more of the same. Keep in mind that your challenges don’t have to define you as a person…sure there are issues to deal with every day, and some are huge. Pain, mental clarity, uncontrollable emotions – they all come into play, but awareness of negative thoughts that are brought on by these things can be the first step toward minimizing how you react to them – which brings more self-control. When you feel that you’re managing your actions, despite how you’re feeling (not an easy thing) – you’re going to become a more positive person, and you’ll start working your way in the “the zone” of actually being more encouraged by taking positive actions on your own. When you own your behavior, you’ll learn to control it, albeit incrementally. That’s finding a more positive you through self-change, and impacting your surroundings with behaviors that breed more positivity (from family, friends, etc.). It’s a synergy that breeds encouragement for all involved.

• When it comes to caregivers, spouses, family or friends – consequences of bad behavior from a TBI survivor will sometimes be met with more bad behavior. Negativity breeds more of the same. Outbursts from a TBI survivor, for instance, that are met with an outburst in reply, can be the rocket fuel that makes everything spin out of control very fast. As a person in the life of a survivor, you have to remember everything that the survivor is experiencing is very difficult, and weigh your responses accordingly. Sure, you can reply firmly when a behavior is totally inappropriate, offensive or even dangerous to themselves (or others), but the goal of bringing them to a point of having a more positive outlook is going to require patience from you, as well as them.

Here is a short, but excellent checklist of tips for caregivers (excerpted from Caregiving After Brain Injury, A Survivor Guide (By Carolyn Rocchio)

Tips on managing caregiving…

✓ Model behaviors you want to see.

✓ Reinforce behaviors you want to see increase.

✓ Structure the environment and use cues for positive behaviors.

✓ Plan rest periods.

✓ Ignore behaviors you want to decrease when safety is not an issue.

✓ Avoid situations that provoke behaviors you are trying to reduce.

✓ Redirect rather than challenge the person.

✓ Seek professional help sooner rather than later.

 

Caregiving requires lots of patience and understanding. It is normal to have many feelings of resentment, sadness, and grief over the loss of the person you knew and loved before the injury. It is not always easy to learn to love this new and different person. With time, strength and endurance, most caregivers find comfort in knowing their job is improving the life of their family member with a brain injury.

In closing, survivors of TBI have negative and positive options to approaching their recovery, and rebuilding a life is a “do it yourself project” for the most part – all other players in their lives can give care, encouragement, and as much help as possible, but in the end the survivor will determine their path to recovery (and it will depend on their outlook and overall cognition). By not focusing on the past, and living in the present (in their “new normal”), TBI survivors have a shot at making a new and satisfying life. Not necessarily the life they had before, but through encouragement and work, they can at least find as much contentment as possible. As my dad always said: don’t get discouraged. A simple, but clear statement of encouragement that can carry you through the rest of your life. Own it!

via There’s always hope… Encouragement after TBI

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[WEB SITE] Executive dysfunction after brain injury

Executive dysfunction after brain injury

Executive dysfunction is a term for the range of cognitiveemotional and behavioural difficulties which often occur after injury to the frontal lobes of the brain. Impairment of executive functions is common after acquired brain injury and has a profound effect on many aspects of everyday life.

This page explains what executive functions are, why they are so important and which part of the brain is responsible for controlling them. It then provides an overview of the causes, effects, assessment and rehabilitation of executive dysfunction. Some general coping strategies are also suggested to help brain injury survivors to compensate for impairments.

What are executive functions?

Executive functioning is an umbrella term for many abilities including:

  • Planning and organisation
  • Flexible thinking
  • Monitoring performance
  • Multi-tasking
  • Solving unusual problems
  • Self-awareness
  • Learning rules
  • Social behaviour
  • Making decisions
  • Motivation
  • Initiating appropriate behaviour
  • Inhibiting inappropriate behaviour
  • Controlling emotions
  • Concentrating and taking in information

Most of us take these abilities for granted and we effortlessly perform extremely complex tasks all the time in our everyday lives. Let us consider, for example, the role of some executive functions in a ‘simple’ activity like cooking a meal:

Motivation – Wanting to make a nice meal and making the decision to start doing it.

Planning and organisation – Getting all the ingredients and thinking about the right times to start them cooking so they will be ready at the same time.

Monitoring performance – Checking the food is cooking properly and the water isn’t boiling over.

Flexible thinking – Lowering the heat if the food is cooking too quickly or leaving it longer if it is not cooked.

Multi-tasking – Washing the laundry and putting it out to dry, while still remembering to attend to the food at the right times.

These complex skills require advanced brain functions. The brain areas involved are described in the next section.

Which part of the brain controls executive functions?

Executive functions are controlled by the frontal lobes of the brain. The frontal lobes are connected with many other brain areas and co-ordinate the activities of these other regions. They can be thought of as the conductor of the brain’s orchestra. Injury to the frontal lobes is the most common cause of executive dysfunction. Occasionally, damage to other brain areas which are connected to the frontal lobes can also impair executive functions.

The frontal lobes cover a large part of the front of the brain, directly behind the forehead. The diagram below shows their location:

The frontal lobes can be damaged by any form of acquired brain injury, such as stroketumourencephalitis  and meningitis They are particularly vulnerable to traumatic brain injury, due to their location at the front of the brain and their large size. Even a blow to the back of the head can cause frontal lobe injury because the brain is knocked back and forth in the skull and the frontal lobes bang against bony ridges above the eyes.

What is executive dysfunction?

The importance of executive functions is shown by the difficulties caused when they don’t work properly. Since the executive functions are involved in even the most routine activities, frontal lobe injuries can lead to deficits in cognitive (thinking) skills, personality and social behaviour.

The most common effects of executive dysfunction are summarised below:

Difficulties with initiating, organising and carrying out activities

  • Loss of ‘get up and go’.
  • Problems with thinking ahead and carrying out the sequence of steps needed to complete a task.

This can often be mistaken for ‘laziness’ or a lack of motivation and energy.

Rigidity in thoughts and actions

  • Difficulty in evaluating the result of actions and reduced ability to change behaviour or switch between tasks if needed.

Poor problem solving

  • Finding it hard to anticipate consequences.
  • Decreased ability to make accurate judgements or find solutions if things are going wrong.

Impulsivity

  • Acting too quickly and impulsively without fully thinking through the consequences. For example, spending more money than can be afforded.

Mood disturbances

  • Difficulty in controlling emotions which may lead to outbursts of emotion such as anger or crying.
  • Rapid mood changes may occur. For example, switching from happiness to sadness for no apparent reason.

Difficulties in social situations

  • Reduced ability to engage in social interactions.
  • Finding it hard to initiate, participate in, or pay attention to conversations.
  • Poor judgement in social situations, which may lead to saying or doing inappropriate things.

Difficulties with memory and attention

  • Finding it harder to concentrate.
  • Difficulty with learning new information.
  • Decreased memory for past or current events, which may lead to disorientation.

You may hear different names for these symptoms. They are commonly referred to as executive dysfunction but many people use the term ‘dysexecutive syndrome’ or simply ‘frontal lobe problems’. They are sometimes referred to as a syndrome because several of the symptoms usually occur together.

It is important to remember that not everyone with executive dysfunction experiences all of these problems. The symptoms can range from subtle effects, which only close friends and family members may notice, to extreme and problematic behaviour.

The effects of executive dysfunction on day-to-day life

It is often hard for people with frontal lobe injuries to explain the difficulties they are experiencing, often because they may be unaware that their behaviour is inappropriate. Their behaviour may appear to be very anti-social and can be misunderstood as depression, lack of motivation, selfishness, or aggression. Relationships with others may be negatively affected as a result.

Executive functioning problems may also have a significant emotional impact and can lead to feelings of frustration, exhaustion, embarrassment and isolation. It can also be very difficult to return to work due to problems with multi-tasking, organisation and motivation. An inability to prioritise and complete tasks also makes working life difficult.

It is important to be aware of the fact that these behaviours occur as a result of brain injury and are not intentional. Specialised input from rehabilitation specialists, such as neuropsychologists and occupational therapists, can help to compensate for the problems.

The following sections provide an overview of assessment and rehabilitation, before providing some practical coping strategies.

Assessing executive dysfunction

The initial assessment of executive functioning after brain injury will usually be carried out by a clinical neuropsychologist. The assessment provides detailed information about an individual’s cognitive, emotional and behavioural deficits. The results can then assist in planning rehabilitation strategies to manage the problems.

During an assessment, the neuropsychologist will consider the following questions:

  • What are the main problems for the individual and their family?
  • How do the problems affect functioning in everyday life?
  • What are the person’s goals and can they go back to work/college/school?
  • To what extent are the executive deficits related to other problems in areas such as language, memory and perception?
  • How do the person’s abilities compare with others of the same age, background, gender and with injury to a similar area of the brain?
  • How are the person with brain injury and their family coping?
  • What kind of rehabilitation should be offered?

Neuropsychological assessments involve a range of different standardised tests, which are designed to measure different aspects of cognitive functioning. Some of these tests are in a questionnaire, puzzle or game format, while others take place in a real-world environment. It is very important that the tests are completed without prior knowledge or preparation in order for them to accurately reflect an individual’s abilities. For that reason, no details of specific tests are included here.

It is important to remember that there are no passes or failures in the assessments. They simply provide an indication of areas that need help and rehabilitation, so there is no need for people to worry about their performance but simply to complete the tasks as best they can.

Rehabilitation of executive dysfunction

Rehabilitation of executive dysfunction can be challenging and requires an individualised approach to treatment. The rehabilitation programme for each patient will depend on their goals, the nature of their difficulties, selfawareness, readiness to engage in treatment, level of social support and presence of other issues such as mood disturbances.

An important part of the rehabilitation process is educating the person about the effects of their injury. This can help increase the person’s insight and understanding of what has happened. For that reason, reading this factsheet or other Headway information materials may be helpful for both survivors and their family members.

If you feel that you or someone you know would benefit from rehabilitation then the first step is to ask a GP if a referral is available, preferably to a neuropsychologist initially. If there are no NHS referrals available then it may be possible to visit someone in private practice.

For more information on this subject see the Headway booklet Rehabilitation after brain injury, or visit the ‘Rehabilitation after brain injury‘ section using the link on the right. Also, the Headway helpline can talk you through the referral process and signpost you to organisations that can help.

Coping strategies for brain injury survivors

Because executive functions are such a vital part of our everyday lives, it is important to find ‘survival strategies’ when problems arise. Here are a few suggestions of strategies that may help if you have difficulties yourself:

Planning

Allow yourself plenty of time to plan activities and record your plans, using as many aids as you find helpful (such as calendars, diaries, electronic timing devices, mobile phones and pagers).

  • When planning your day, week, or a particular activity use a step-bystep approach, dividing the activity into manageable ‘chunks’.
  • Use checklists and tick off each part of the activity that you have accomplished. This will help you to stay on track.
  • Mentally rehearse your plans.
  • Discuss your plans for the day with others. They can help you to write down a step-by-step checklist of the different actions for that day.
  • Similar strategies can be used for longer term planning, such as appointments you need to make. Discussing your plans with others will make you more likely to remember and the other person can remind you of things if necessary.
  • Step-by-step checklists can be placed in key locations in the house in order to remind you of the different sequences to go through to do a task, such as preparing a meal.
  • Prepare a weekly routine for tasks like shopping, washing and tidying the house. Knowing that, for example, Monday is shopping day, will make you more motivated to get the task done.
  • Try to develop back up plans in advance, rather than when problems arise.

Many strategies for overcoming memory problems can also be helpful for difficulties with planning. See the Headway factsheet Coping with memory problems – practical strategies for more information.

Mood

  • If you feel unable to manage your emotions, it may help to talk to your doctor about this. They may be able to refer you to a form of therapy that will work for you, such as cognitive behavioural therapy (CBT).
  • It may be helpful for others to make allowances for the difficulties you may experience in controlling your mood. When you feel very upset, it may be better for the other person to try to calm the situation in the short term and discuss it with you later.
  • Others may need to make allowances for changes in your behaviour and personality. It is important for them to remember that the changes are a result of the injury and not because you are being lazy, self-centred or difficult.

Social difficulties

  • Trusted friends or family members could help you by reminding you of what may be the most appropriate thing to do or say if you are struggling in social situations.
  • It may help to mentally prepare for social situations and to think about any difficult situations that have occurred before in similar environments.

Executive dysfunction from a carer’s point of view

Caring for a person with executive deficits can be a full-time job and living with personality and behaviour changes in a relative or friend can be very distressing.

Problems that carers may experience include:

  • Stress, anxiety or depression
  • Increased responsibility
  • Strained relationships
  • Reduced communication with partner
  • Restricted leisure/social life
  • Reduced sexual and emotional intimacy with a partner
  • Feeling tired and frustrated

It is important for family members, carers and friends to access support for their practical and emotional needs. Input from the rehabilitation team can help and some people find peer support groups for carers useful. Headway’s Groups and Branches offer valuable support for both survivors and family members. It is also important to see a GP, who will be able to refer to local counselling and therapy services where they are available.

For further information see the Headway booklet Caring for someone with a brain injury, which can be obtained free-of-charge from the Headway helpline, or visit the ‘Caring‘ section for more information. The helpline can also provide support and refer to local Groups and Branches.

Conclusion

The frontal lobes are commonly affected by acquired brain injury. Damage to the frontal lobes is likely to cause symptoms which are collectively termed executive dysfunction.

The diverse ways executive difficulties present themselves mean that assessment and rehabilitation are not straightforward. However, with appropriate rehabilitation and the use of coping strategies, many people can make good recoveries and learn to manage their difficulties.

via Executive dysfunction | Headway

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[BLOG] Who Am I Now? Loss of Self after TBI – Brain Injury Blog With Free TBI Information

Loss of self is one of the biggest hurdles that TBI Survivors face

March, 2018

By Bill Herrin

When a loved one dies, friends and family bear the brunt of the loss. There are rituals for their grief and mourning. As they go on with their lives, they hope and often expect that the pain will fade with time. They are often told, “Give yourself time” or “Don’t make any major decisions now” and “It will get easier.” They are expected to feel sad, upset, and even angry after a death. But they are also expected to move on with their lives, no matter how difficult or painful it is.

Everything Has Changed

But when a person has a traumatic brain injury, their family faces new and different challenges. They have lost many of the things that they knew and loved about the Survivor. Their relationship with the Survivor has changed and so have their expectations and dreams for the future. While the physical, cognitive, behavioral, social and  even financial changes may be most evident, there’s something else that’s harder to define.  That’s the loss of self that the Survivor of a TBI faces. “Who am I now?” is the critical question. “What gives meaning to my life now?” Then there is the uncertainty of whether it’s even possible to reclaim your old life when so much has changed? While most everyone tries to overcome loss of self, some succeed…some cannot.

Necessity is the Mother of Reinvention

Hilary Zayed, who survived her brain injury, knows how difficult finding your new self can be. Her story is one of a huge transition described in her book, Reinventing Oneself After Loss.  Her artwork became a vehicle as she explored who she had become since her injury and how she rebuilt her identity, mourning her loss of self, and slowly regaining her new sense of self. Everyone will have different goals and different results. It’s not necessarily finding what makes you happy (though it helps), but more importantly, it’s finding what gives your life meaning now. This is the first step toward such a huge change. Finding a catalyst that drives you forward toward your reinvention can be incredibly motivating. Think about what makes you feel fulfilled, satisfied and meaningful and consider how that could become a part of your life after TBI.

There is no set timetable or deadlines for reinventing your self. Survivor Garry Prowe’s tips on Living a Full Life after Brain Injury, admits that the initial steps to finding your new life may sound obvious – dealing with a roller coaster of emotions, feeling overwhelmed, angry, and depressed along with financial stress, unemployment, social isolation, and life style changes. But the greatest stress may be the uncertainty of the future as the path and extent of recovery is unpredictable. However, the road to reinvention has to start somewhere. It can take months and even years until you feel ready to work on reinventing your sense of self. Once you’ve been able to self-assess your strengths and capabilities, you’ll have a much better idea of your new direction as you begin the process of rebuilding. Prowe’s tip card is an inexpensive resource ($1) that outlines the many steps of recovery with contacts/resources/ideas for you. (You can sign up to receive a free catalog and tip card from Lash & Associates – and choose his tip card “Living a Full Life after Brain Injury at this link).

Different Paths for Different People

As life goes on, be encouraged by the many who have been in your shoes and traveled your journey. Jeff Sebell, also a survivor,  worked on “getting his power back” after his brain injury by focusing on regaining his self confidence, re-learning how to make decisions, and taking action steps toward living the life he wanted. Sounds simple, right? Of course it’s not at all, but Jeff shares an incredibly insightful peek into his “Modus Operandi” in this blog post, and also in his book “Learning to Live with Yourself after Brain Injury.” Jeff’s take on having a better life is based on how you choose to interpret the things that happen on a daily basis. This can make the difference between having a good day or a bad one. Just using this as a starting point can move your life in a more positive direction! We don’t have control over what happens to us, but we can interpret and judge its impact on us – and try to see the big picture. Jeff reminds us that TBI, and loss of self, doesn’t have to leave you powerless. Rather you can regain control over your life by working on positivity and determination. The results will follow. Your loss of self will soon become transforming…you’ll find that you’ve discovered your “new normal.”

There are no set rules for this rediscovery. We all have very different paths after a brain injury. Some of these paths may criss-cross and you may share common experiences and feelings with other survivors. However, navigating through the maze of traumatic brain injury requires self-determination, finding your strengths, setting some incremental goals for your life, and making the commitment to start working toward them.

Lash and Associates’ award winning blog site (on our website) offers hundreds of absolutely free blog articles by TBI experts and clinicians, TBI survivors, and family members that share insights as well. A well-rounded offering of insights from every possible angle – including more on the subject of today’s bulletin – loss of self. Lash & Associates is also a leading publisher of books, cognitive software, and more – all for the brain injury community. Just click the two award icons, or CLICK HERE to see our entire blog article collection!

via Who Am I Now? Loss of Self after TBI – Brain Injury Blog With Free TBI Information

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[Abstract] Family-led rehabilitation after stroke in India (ATTEND): a randomised controlled trial

Summary

Background

Most people with stroke in India have no access to organised rehabilitation services. The effectiveness of training family members to provide stroke rehabilitation is uncertain. Our primary objective was to determine whether family-led stroke rehabilitation, initiated in hospital and continued at home, would be superior to usual care in a low-resource setting.

Methods

The Family-led Rehabilitation after Stroke in India (ATTEND) trial was a prospectively randomised open trial with blinded endpoint done across 14 hospitals in India. Patients aged 18 years or older who had had a stroke within the past month, had residual disability and reasonable expectation of survival, and who had an informal family-nominated caregiver were randomly assigned to intervention or usual care by site coordinators using a secure web-based system with minimisation by site and stroke severity. The family members of participants in the intervention group received additional structured rehabilitation training—including information provision, joint goal setting, carer training, and task-specific training—that was started in hospital and continued at home for up to 2 months. The primary outcome was death or dependency at 6 months, defined by scores 3–6 on the modified Rankin scale (range, 0 [no symptoms] to 6 [death]) as assessed by masked observers. Analyses were by intention to treat. This trial is registered with Clinical Trials Registry-India (CTRI/2013/04/003557), Australian New Zealand Clinical Trials Registry (ACTRN12613000078752), and Universal Trial Number (U1111-1138-6707).

Findings

Between Jan 13, 2014, and Feb 12, 2016, 1250 patients were randomly assigned to intervention (n=623) or control (n=627) groups. 33 patients were lost to follow-up (14 intervention, 19 control) and five patients withdrew (two intervention, three control). At 6 months, 285 (47%) of 607 patients in the intervention group and 287 (47%) of 605 controls were dead or dependent (odds ratio 0·98, 95% CI 0·78–1·23, p=0·87). 72 (12%) patients in the intervention group and 86 (14%) in the control group died (p=0·27), and we observed no difference in rehospitalisation (89 [14%]patients in the intervention group vs 82 [13%] in the control group; p=0·56). We also found no difference in total non-fatal events (112 events in 82 [13%] intervention patients vs 110 events in 79 [13%] control patients; p=0·80).

Interpretation

Although task shifting is an attractive solution for health-care sustainability, our results do not support investment in new stroke rehabilitation services that shift tasks to family caregivers, unless new evidence emerges. A future avenue of research should be to investigate the effects of task shifting to health-care assistants or team-based community care.

Funding

The National Health and Medical Research Council of Australia.

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via Family-led rehabilitation after stroke in India (ATTEND): a randomised controlled trial – The Lancet

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[BLOG POST] 5 Things Every TBI Survivor Wants You to Understand

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March is National Brain Injury Awareness Month, and as promised, I am writing a series of blogs to help educate others and bring awareness to traumatic brain injuries (TBI).

1. Our brains no longer work the same. 
We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

2. We suffer a great deal of fatigue.
We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see.  I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar.  If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen.  Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.

3. We live with fear and anxiety. 
Many of us live in a constant state of fear of hurting ourselves again. For myself personally, I have a fear of falling on the ice, and of hitting my head in general. I know I suffered a really hard blow to my head, and I am not sure exactly how much it can endure if I were to injure it again. I am deeply afraid that if it were to take another blow, I may not recover (ie, death) or I may find myself completely disabled. I am fortunate to have a great understanding of the Law of Attraction and am trying my hardest to change my fears into postive thoughts with the help of a therapist.

Others have a daily struggle of even trying to get out of bed in the morning. They are terrified of what might happen next to them. These are legitimate fears that many TBI survivors live with. For many, it manifests into anxiety. Some have such profound anxiety that they can hardly leave their home.

Jason Donarski-Wichlacz from Duluth, MN, received a TBI in December of 2014 after being kicked in the head by a patient in a behavioral health facility. He speaks of his struggles with anxiety:

I never had anxiety before, but now I have panic attacks everyday. Sometimes about my future and will I get better, will my wife leave me, am I still a good father. Other times it is because matching socks is overwhelming or someone ate the last peanut butter cup.

I startle and jump at almost everything. I can send my wife a text when she is in the room. I just sent the text, I know her phone is going to chime… Still I jump every time it chimes.

Grocery stores are terrifying. All the colors, the stimulation, and words everywhere. I get overwhelmed and can’t remember where anything is or what I came for.

4. We deal with chronic pain.
Many of us sustained multiple injuries in our accidents. Once the broken bones are healed, and the bruises and scars have faded, we still deal with a lot of chronic pain. For myself, I suffered a considerable amount of neck and chest damage. This pain is sometimes so bad that I am not able to get comfortable in bed to fall asleep. Others have constant migraines from hitting their head. For most of us, a change in weather wreaks all sort of havoc on our bodies.

Lynnika Butler, of Eureka, CA, fell on to concrete while having a seizure in 2011, fracturing her skull and resulting in a TBI. She speaks about her chronic migraine headaches (which are all too common for TBI survivors)

I never had migraines until I sustained a head injury. Now I have one, or sometimes a cluster of two or three, every few weeks. They also crop up when I am stressed or sleep deprived. Sometimes medication works like magic, but other times I have to wait out the pain. When the migraine is over, I am usually exhausted and spacey for a day or two.

5. We often feel isolated and alone.
Because of all the issues I stated above, we sometimes have a hard time leaving the house. Recently I attended a get together of friends at a restaurant. There were TVs all over the room, all on different channels. The lights were dim and there was a lot of buzz from all of the talking. I had a very hard time concentrating on what anyone at our table was saying, and the constantly changing lights on the TVs were just too much for me to bear. It was sensory stimulation overload. I lasted about two hours before I had to go home and collapse into bed. My friends don’t see that part. They don’t understand what it’s like. This is what causes many of us to feel so isolated and alone. The “invisible” aspect of what we deal with on a daily basis is a lonely struggle.

Kirsten Selberg from San Francisco, CA, fell while ice skating just over a year ago and sustained a TBI. She speaks to the feelings of depression and isolation so perfectly:

Even though my TBI was a ‘mild’ one, I found myself dealing with a depression that was two-fold. I was not only depressed because of my new mental and physical limitations, but also because many of my symptoms forced me to spend long periods of time self-isolating from the things — like social interactions — that would trigger problems for me. With TBI it is very easy to get mentally and emotionally turned inward, which is a very lonely place to be.

Also, check out my other blogs on the Huffington Post:
“Life With a Traumatic Brain Injury”
“Life With a TBI: March is National Brain Injury Awareness Month”

I invite you to join my TBI Tribe on Facebook if you are a survivor, or loved one of a survivor.

via 5 Things Every TBI Survivor Wants You to Understand | HuffPost

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[WEB SITE] Caregiving Issues and Strategies

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Whether you’re trying to work out a care plan for your aging parents with  your siblings, or searching online for the latest app to assist you with your ill spouse’s medication reminders, FCA’s resources on Caregiving Issues and Strategies offer a wealth of information. This section provides you with practical care strategies, stress relief, available community resources, how to handle family issues, as well as hands-on care.

Source: Family Caregiver Alliance

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[WEB SITE] Can caregiving lead to PTSD? – The Caregiver Space

Most people associate PTSD with veterans of war, but you don’t have to be a soldier to experience this condition.

The NIMH defines PTSD as ‘a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.’ When people experience a traumatic event, it’s common to be impacted by it with a range of emotions. People with PTSD don’t recover from this initial trauma. It doesn’t have to be triggered by a ‘dangerous’ event; many people experience PTSD after the death of a loved one or another emotionally challenging experience.

Risk factors for PTSD will sound familiar to family caregivers. They include:

  • Living through dangerous events and traumas
  • Seeing another person hurt, or seeing a dead body
  • Feeling horror, helplessness, or extreme fear
  • Having little or no social support after the event
  • Dealing with extra stress after the event, such as loss of a loved one, pain and injury, or loss of a job or home

You can learn about the symptoms and diagnosis of PTSD on the NIMH website.

If you think you may have PTSD, talk to your family doctor. If you aren’t comfortable seeking treatment, there are still some first steps you can take. Reducing stress through exercise and seeking out comforting situations can help you feel more secure. Get support from your friends and family, especially by letting them know what situations trigger your symptoms. Try to be realistic about what you can do each day, break up projects into small tasks, and accept that you can’t do everything. PTSD doesn’t go away overnight, but it can get better.

Here’s what some of our veteran caregivers have to say about PTSD:

After caring for my husband, for 20 years, I am afraid to answer my phone, open mail, or attend doctor appointments, fearing more bad news. I just want to hide. – Lynn R.

If you sleep with one ear open, you startle easily. Loss of sleep triggered by this startle reflex, will lead to ptsd. People who fail to understand my situation don’t believe me, but thankfully medical professionals do. – Angela M.

After 27 years caring for my very vulnerable son, I can tell you that it is indeed PTSD. For a mother, the fear of something happening to your child is much worse than anything that could happen to yourself. I have an anxiety disorder and have suffered from depression. You live in terror every time you hire a new respite worker, and only trust yourself as a caregiver. Your decisions carry so much weight that some days you feel they will crush you. – Dawn D.

Being part of caring for my MIL definitely has caused PTSD. Its a complete nightmare, and now I am scared of her! She talks about cutting people and watching them bleed! I know its the dementia, but she scares the hell out of me! I have nightmares about all of it! – Vickie B.

Anecdotally, caregivers who take care of a family member who is or has been abusive are more likely to talk about suffering from caregiver PTSD.

I’m the only child in my 50’s. My parents are near 90, refuse all outside care, cashed in their life insurance policy with not enough for burial. Now there is over 12k in medical bills and they won’t call a lawyer or approve forms for Medicaid. They say no one is putting them in a home. Mom has fallen numerous times and in nursing care and Dad signs her out. To stay out of care she shifts blame onto anyone including, and most of all, me. Agencies won’t help. Doctors quit the case. AOA said it’s one of the most difficult cases they have encountered. – Jacqueline A.

I wish my mom would understand that no one wants to help her because she is a mean old spiteful monster who has alienated EVERY one in the family to the point that they don’t even want to call to talk to her anymore. But she blames me for it! – David R.

I used to think that I would ignore my stepfather who abused me, but when it came down to it…I had to treat him better than me. – Jennifer K.

I can relate to caregiver PTSD from taking care of my mother that never took care of me & Granny that raised me! – Chrissy G.

What should you do if you feel you have caregiver PTSD?

The reason you have PTSD is because you love and you care. The key to reducing anxiety is to get out of your own head. Watch your self talk. Be kind to your mind, it does not know the difference between perceived danger and real danger….live in the moment! – Dawn D.

If you are feeling overwhelmed, you may, very well, benefit from talking with a therapist or counselor. I have learned to take time, for myself, once in a while, to spend a few hours, with friends, or even just go for a ride. I feel guilty, for even smiling, sometimes, but we have to take care of ourselves, and find ways to keep our spirits uplifted, while we care for others. For what it’s worth, I would advise you to, whenever you can, do something special, for yourself, even if it is a meal out, a movie, or just something you like. Try to interact, in a positive way, with others, and rejoin the human race. You are entitled to happiness, and, your [loved one] may even want that for you, as well. – Lynn R.

Source: Can caregiving lead to PTSD? | The Caregiver Space

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[WEB SITE] I don’t want to be my husband’s caregiver

Yes, we both said our vows. But how many of us break them? Most of us, at one point or another.

Would he do this if our roles were reversed? Absolutely not. He’d be out of here in a minute.

He was cheating on me when his spine was crushed in a car accident. I have no idea where he was going that afternoon. He was supposed to be at work. It could have been a work meeting, a lunch time errand, whatever. But obviously I’m going to believe it was to meet her.

I had just found out, but hadn’t let him know I knew yet. I was deciding what to do; deciding if I should leave him or not.

And then I got the phone call.

It’s just assumed that I’ll take care of him. No one asked. I’m not sure how I would do it, though. I’m told it’ll take months for his disability to through. It’ll be years before we see any money from the lawsuit, if we ever get anything. I’m out on FMLA for now, but we can’t survive without an income. We were just barely getting by before.

I try not to think about the medical bills that are accumulating at this moment.

They keep talking about how they’ll be sending him home with me once he’s stable. As if I should be excited. I wasn’t sure if I wanted my husband home with me, but this isn’t really my husband. He’s like an ornery child. The personality changes could be temporary or permanent. He could regain the ability to do certain tasks on his own, depending on the severity of his TBI and how much his body heals.

This is not what I want for my life.

Before the accident my friends were telling me he didn’t deserve me. That I should pack up my bags and go. Or kick him out and fight him for the house in the divorce. Now those same friends are acting as if I should end my career and spend the rest of my days wiping his ass and fetching things for him. As if that was God’s plan for me.

Is it even an option to say no? How will I support us if I have to be here with him around the clock? Where will we live once we declare bankruptcy? What will happen to him if I leave.

It’s funny how once someone gets themselves smashed up they are made a saint. No one can say a bad thing about him now. But I will. He was a terrible husband.

And I don’t want to give up my life for his.

Anonymous

Source: I don’t want to be my husband’s caregiver | The Caregiver Space

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