Archive for category Caregivers

[WEB SITE] Helping Others Understand: Post-Stroke Fatigue

[Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know:]

Stroke is unpredictable both in its arrival and in the consequences it leaves, but one common stroke deficit is fatigue. Some studies indicate that as many as 70 percent of survivors experience fatigue at some time following their stroke. Unlike exertional fatigue that we feel after working in the yard, post-stroke fatigue occurs from doing typical everyday tasks or sometimes from not doing anything. “It is a fatigue associated with the nervous system, which is quite difficult to understand,” said Jade Bender-Burnett, P.T., D.P.T., N.C.S., a neurological physical therapist in Falls Church, Virginia. “It’s very frustrating to the person who’s living with it because, unlike exertional fatigue, post-stroke fatigue doesn’t always resolve after you take a break, or get some rest.”

That has been Roman Nemec’s experience since surviving an ischemic stroke 11 years ago. It doesn’t seem to matter how much sleep he gets, “I walk around tired all the time, even after 9-10 hours of sleep,” he said from his home in Georgia.

This can be difficult for friends and family members to get their heads around because they have not likely experienced this kind of brain fatigue. Bender-Burnett has asked her clients who were marathoners prior to their stroke to compare the fatigue one feels following a marathon to post-stroke fatigue: “They said the fatigue you feel after damage to the brain is unlike any fatigue they’ve ever felt,” she said.

While there is no standardized scale for post-stroke fatigue, Bender-Burnett says that therapists distinguish between two types of fatigue. “Objective fatigue occurs when we can see physical, mental or cognitive changes,” she said. “With subjective fatigue we don’t see any changes, but the survivor will tell you that they’re feeling extremely weary and have no energy.”

For some this goes on for a few months after their stroke, for others, like Roman, it is persistent. Fatigue may be a side effect of medication. “Post-stroke fatigue is very individualized,” Bender-Burnett said. “One of the most frustrating parts of post-stroke fatigue is that it’s so unpredictable. Today, getting up, brushing your teeth and putting on your clothes may be fine, but tomorrow you may not be able to complete the morning routine without a rest break. That unpredictability is very frustrating for people and makes reintegration into daily life difficult.”

Post-stroke fatigue often changes over time. People report more and greater fatigue in the first six months. It’s episodic at first and seems to come out of nowhere: “They may be functioning well, and then all of a sudden they hit a wall,” she said. “It seems that as they get farther along in recovery, those hit-the-wall episodes decrease, and the lingering effect is ‘I just don’t have the energy to do all the things on my plate.’”

Life consequences span the spectrum from nuisance to career-ending. It can impact a survivor’s ability to function in unpredictable ways: As they tire, they may become clumsy or their speech may be affected. Their ability to understand, comprehend or recall may be compromised. Some people get irritable, while others experience increased emotional lability (crying or laughing with no apparent trigger). Bender-Burnett has worked with people who have made remarkable recoveries but were not able to return to work because of post-stroke fatigue.

Just as the consequences are individualized, so are the responses. If your energy is better in the morning, then take advantage of that. For mental fatigue, the most effective response is to sit quietly with low sensory stimulation, not necessarily take a nap. Some survivors may require regular and scheduled rest breaks or even a nap; that does not work for Roman: “I just live through it,” he said. “There are worse things than being tired. I feel good; I can get around; I can talk. Life is good compared to what it could be. Being tired all the time is not a big problem.”

Rhonda Hand, whose significant other, Tarvin, is a survivor, said: “In our household the fatigue issue is factored in before any event or activity and recuperation time after an event or activity. We just block off rest time like another activity; if we don’t, everything shuts down, including speech. Over the years, we have become much more proactive in scheduling appointments with anybody. There is nothing before 8 a.m. That’s when deep sleep is happening.”

Knowing your limits — and quitting before you hit them — is key to living with post-stroke fatigue. Survivors with fatigue have limited energy reserves, and if they get depleted, they take longer to replenish. “You don’t want push to the point just before you’re exhausted, you want to end on a high note, leaving some reserves,” Bender-Burnett said.

“We’re still learning about post-stroke fatigue from the healthcare perspective, and so I think it’s important that we all be willing to recognize it and have open communication about it,” Bender-Burnett said. “I urge family members and friends to come from a position of compassion and understanding rather than expectation that everything should be better, because, much like depression, others can’t always see it but, if you’re feeling it, it can be quite limiting.”


The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke fatigue may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet  that you can print or share via email or socia

Source: Helping Others Understand: Post-Stroke Fatigue – Stroke Connection Magazine – Spring 2017

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[BLOG POST] Everything You Want To Know About Stairlifts Is Right Here  

Photo of a room with a dining table with chairs in the middle. In the corner are stairs, and a stairlift is attached to it.

Ever wondered if you can make stairs at home accessible for your elderly loved ones or other family members whose disabilities may prevent them from going up and down the stairs? Our friends over at Home Healthcare Adaptations have created a comprehensive guide that will walk you through the types of stairlifts, mechanics of how they work, who would need them, their costs, benefits, and safety features. Watch this quick video below to understand the basics of stairlifts. Text version is below the video.

What are stairlifts?

  • Stairlifts are lifting devices powered by electricity which enable people with limited mobility to travel ip and down staircases with ease.
  • They are equipped with a chair or a platform, the selection dependent upon the specific user’s needs.

How does a stairlift work?

  • A stairlift moves along a rail which is fitted to the stairs and a motor is used to move the stairlift along a track.
  • This motor is powered by a battery which charges automatically on a continual basis. It can be charged at either the top or the bottom of the stairs and will always be sufficiently charged so that it will never cut out halfway along the stairs.
  • Stairlifts are easy to operate. They are controlled by a small toggle or joystick on the armrest – simply direct this up or down to move the stairlift.
  • If you have 2 or more people using the same stairlift, it comes as standard with 2 remotes that will enable a user to summon it up/down the stairs.

Who is most likely to need a stairlift?

  • Someone with multiple sclerosis or arthritis.
  • Someone who has undergone hip replacements.
  • Someone whose mobility is affected following an operation.
  • An elderly person with notable frailty.

Types of Stairlifts

  • Straight stairlifts are the simplest of all stairlift types and can fit the majority of staircases that have a straight flight from bottom to top.
  • Curved stairlifts are used when the staircase for which it is being fitted has one or more turns.
  • Perch (or standing) stairlifts are ideal for those who find it difficult to bend their knees and sit. The seat is smaller and positioned higher than with a standard stairlift, allowing the user to perch rather than sit.
  • Outdoor lifts have similar features to indoor stairlifts, in addition to being waterproof and able to withstand extreme conditions.

How much do stairlifts cost?

  • Straight stairlifts cost in the region of €1,800 (supply and maintenance) and can be fitted within 2-3 days of being ordered.
  • Curved stairlifts are more expensive, as they are made to measure. They usually cost between €5,000 and €6,000, while manufacture and fitting could take 5-6 weeks from the initial order date.

Stairlift safety features

  • Sensors to detect potential obstructions.
  • Lockable on/off switch to deactivate the stairlift when not in use.
  • Mechanical and electrical braking systems to braking systems to bring the stairlift to a smooth, safe stop.
  • Safety belts on the seat/perch to prevent users from falling off the stairlift.
  • Swiveling footplates to bridge the gap between the stairlift and the top of the stairs.

Benefits of Stairlifts

  • Provide a safe, comfortable method of moving freely around your home.
  • Promote a substantial degree of independence.
  • No need to walk up and down stairs to fo to an upstairs bathroom or bedroom.
  • You can continue living in your current home without the need to relocate.
  • Extremely easy to use – all you need to do to operate a stairlift is move a control pad.
  • Easy to fold and unfold so as to be unobstrusive when not in use.
  • Very affordable – running costs are similar to what you’d use in boiling a kettle

Source: Home Healthcare Adaptations

Read more here.

Source: Everything You Want To Know About Stairlifts Is Right Here – Assistive Technology Blog


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[WEB SITE] Finding Strategies That Work After Brain Injury


My brother had a brain injury six years ago and has been through several periods of rehabilitation to where he now jokes he could be a therapist! He can list all the strategies he is supposed to use to get somewhere on time — like his job — he just doesn’t do them or says they don’t help. Can you give me some insight here?


To begin, one has to consider whether being on time to work is meaningful to your brother. If he enjoys his job and recognizes the implications of being late, then chances of helping him figure out how to get there on time are much better.

Assuming this is the case, your brother’s dilemma is not uncommon after a brain injury. Many everyday activities, such as being somewhere on time, actually involve a number of different skills. It’s important to first figure out what skills are involved so you can choose strategies that are likely to work.

Let’s take your example of getting to work on time and list just some of the cognitive skills and steps that play a part and could be causing his problems:


  • Attention: What time is it, anyway? Am I on time or running late? Am I doing what I am supposed to be doing right now (or getting distracted by a TV show)?
  • Memory: What time do I have to be at work today? What needs to be done before I leave the house?
  • Initiation: Do I get started on each step of my routine in a timely manner?
  • Planning: Do I have enough time to get ready? Are my clothes ready? Have I planned enough time for transportation?
  • Problem-solving: What do I do if I’m running late? What if my transportation falls through? What are my other options? Do I have enough time to go back if I forgot something like my ID badge, lunch, or newspaper?


Breaking down an activity into more specific component skills can often help tease apart where the true difficulty lies. Then a strategy that promotes success (generally, one that builds on his strengths) can be developed by the person with brain injury and if needed, a significant other. If this proves too difficult, some consultation with a cognitive rehabilitationspecialist may be useful as well. And remember, any new strategy often requires a lot of practice to make it a habit, especially after brain injury.

Finally, if your brother does not seem motivated, the discussion needs to be about what is important to him. If getting to work on time is not one of his priorities, what is it that he wants to accomplish?

Click here to go to About Ask the Expert.

Source: Finding Strategies That Work After Brain Injury


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[Abstract] Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community

PURPOSE: To explore the experiences of individuals who have had a severe
traumatic brain injury (TBI) and their carers in the first month post-discharge
from in-patient rehabilitation into living in the community.

METHOD: Using a qualitative approach underpinned by critical realism, we explored the narratives of 10 patients and nine carers using semi-structured interviews approximately one month post-discharge. Thematic analysis was carried out independently by two researchers.

RESULTS: Firstly, perceptions of support were mixed but many patients and carers felt unsupported in the inpatient phase, during transitions between units and when preparing for discharge. Secondly, they struggled to accept a new reality of changed abilities, loss of roles and loss of autonomy. Thirdly, early experiences post-discharge exacerbated fears for the future.

CONCLUSIONS: Most patients and carers struggled to identify a cohesive plan that supported their transition to living in the community. Access to services required much persistence on the part of carers and tended to be short-term, and therefore did not meet their long-term needs. We propose the need for a case manager to be involved at an early stage of their rehabilitation and act as a key point for information and access to on-going rehabilitation and other support services. Implications for Rehabilitation Traumatic Brain Injury (TBI) is a major cause of long-term disability. It can affect all areas of daily life and significantly reduce quality of life for both patient and carer. Professionals appear to underestimate the change in abilities and impact on daily life once patients return home. Community services maintain a short-term focus, whereas patients and carers want to look further ahead – this dissonance adds to anxiety. The study’s findings on service fragmentation indicate an urgent need for better integration within health services and across health, social care and voluntary sectors. A link person/case manager who oversees the patient journey from admission onwards would help improve integrated care and ensure the patient, and carer, are at the center of service provision.

Source: Traumatic Brain Injury Resource Guide – Research Reports – Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community

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[Abstract] Educational and Vocational Issues in Traumatic Brain Injury 

This article describes some of the current issues related to return to school and employment for individuals with traumatic brain injury. A strong, collaborative partnership between an individual’s health care providers and key stake holders is essential toa smooth transition back to school or work. Ways to improve current practices andensure more timely and appropriate educational and employment services and supports for individuals with traumatic brain injury are described. Some recommendations on areas for future research are also offered.

Source: Educational and Vocational Issues in Traumatic Brain Injury – Physical Medicine and Rehabilitation Clinics

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[BLOG POST] Rehab of the everyday – Broken Brain – Brilliant Mind

Rehab of the everyday

Source: W.I.P.

I’ve been giving a lot of thought, lately, to my recovery. I’m going to call it a recovery, because I do feel that’s what’s been taking place with me over the past years. I know that some ascribe to the idea that an injured brain cannot fully reverse its damage — what’s lost is lost. But I’m not entirely convinced. And I hope I never will be. As long as there is a shred of hope that the functionality I once had can be restored, I’m sticking with that.

One of the big reasons I’m sticking with the concept of recovery is what I’ve read about individuals who have sustained serious — even catastrophic — brain injuries, through stroke or accidents, and still came back to do amazing things. There’s the story I’ve read about the man in his 60’s who suffered a stroke, and then worked his way back from not being able to even crawl, to hiking and doing mountain climbing regularly — to the point where his final hours before he died were actually spent mountain climbing. When they autopsied his brain, it was discovered that the  region responsible for motor control had been severely damaged and 97% of the nerves that run from the cerebral cortex to the spine had been destroyed.

Yet, he managed to work his way back after a year to teaching full-time at the college level, and he remarried, kept working and hiking and traveling.

His brain and nervous system had sustained tremendous damage. Yet, he was able to get back on track and on with his life.

He recovered — his functionality, his participation in life, his physical capabilities… things and activities he desired and loved to do. He may not have been “the same person” he was before the stroke (not knowing him, it’s impossible to say), but he nevertheless restored his life to a fullness  that most — with or without brain injury — would value.

What struck me about this recovery, which I read in Doidge’s The Brain That Changes Itself, is how he worked his way back — with the help of others — through doing the everyday things. Learning to crawl after paralysis… then learning to walk again. Learning to type, one finger at a time, then with a whole hand. Bit by bit, gradually, with determination and consistency, he worked his way back. And he eventually ended up mountain climbing at 9,000 feet in Columbia, where he had a heart attack and died not long after.

I contemplate that man’s example, and I wonder how I can apply it to my life. I also see how my path runs parallel to his — despite what’s happened to me, despite the injuries and the setbacks, despite the false-starts and disappointments, I keep going. And I keep intent on my life. The thing with me is to not dwell so intently on my injuries or my difficulties, as I did before. The thing with me is to not get caught up in constantly second-guessing myself and trying to sort out what went wrong. I did that for years — decades, even. And all it got me was more self-doubt and insecurity. Now I have a much better understanding about the true nature of my difficulties, and I can see past the cloud of confusion and doubt, and focus on the goals, rather than the difficulties.

And in focusing on the goals, in focusing on the step-by-step process of getting from one place to the next, going from one phase of my progress to the next with deliberate mindfulness, I find myself getting better and better at the business of living my life. It’s like starting out with anything new — you have to really pay close attention to little details and little signs and signals, in order to refine and develop your technique. It’s like beginning a new sport — you have to pay such careful attention to your form and technique, sometimes for years and years, before you finally get to a place of mastery.

I’ve read that it takes 10,000 hours to become an expert. 10,000 of focused attention and practice on what it is you do. That’s 8 hours a day, 5 days a week, for about 5 years. Or 4 hours a day, 5 days a week, for about 10 years. That number is pretty widely agreed upon, and it’s the figure I’m using for my own purposes. In my case, it’s been over 5 years since my last injury, and I haven’t devoted 10,000 consistent hours to my recovery. I only really started focusing on it — realizing what it was — a couple of years ago. So, I’m feeling a bit behind. But I can’t let it get me down.

No, I need to just keep on keeping on. The things I want to re-learn and/or recover — my composure, my ability to manage my anger in positive, productive ways, my interactions with others, my ability to sustain relationships with people I care about, my ability to stay with a job, even when I’m getting pulled in a hundred different directions… those things take practice. It’s like starting over, in some ways — except that in some cases I never really had a first starting place. Those abilities never got fully and consistently developed with me, since I’ve had so many injuries throughout my childhood, youth, and adulthood. Arrested development? Perhaps.

But you know what? I’m still here. And I’m still willing to work to get to the place where I want to be. It’s tiring, often boring, frustrating, irritating work. But the payoff is huge. I want to recover the things I’ve lost — composure, focus, regular sleep and rest, physical fitness and strength — and it’s going to take work.

So, I’ll work. {shrug} I’ll pay close, even rapt, attention to the little things, put myself in situations that stretch me and teach me about myself, and I’ll leave time to recover, as well. I’ll treat this like any other sort of training — athletic training, especially — and follow the same guidelines I followed when I was first learning to run races and throw the javelin in track. You have to start somewhere, and it’s no good to blame yourself for not being an expert when you’re just starting out. Like it or not, in many ways, I am just starting out with recovering things I’ve lost. Patience is key. Yes, patience.

It’s hard work, but it’s worth it. In the end, I get what I pay for.

Visit BLOG —> Rehab of the everyday – Broken Brain – Brilliant Mind


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[BLOG POST] 10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for the person experiencing it, the reality is that – unless they are specifically told – other people cannot easily grasp it or remember to adapt to it. So whether you’re suffering from depression or anxiety or Fibromyalgia or an IBD like Crohn’s Disease or any of the other number of invisible illnesses out there, here are 10 things others may not realize you are doing because of your illness.

1. Functioning in the midst of little sleep, lots of pain, and/or extreme fatigue. 

Not because you’re good at functioning in this state, or because it’s not a big deal, or because the discomfort isn’t really that bad. But because you literally have no. other. choice. It’s either ‘let this illness take over your entire life and swallow you whole’ or ‘keep the illness enough at bay that you live as normal of a life as you possibly can.’

2. Working your ass off. 

You have enough situations in your life already where you have little to no control over what is happening to you and/or your body, so you often find yourself working overtime, going the extra mile, and pushing yourself to the peak of your limit – just because it feels good to actually do something and take the reins when you can.

3. Having a hard time trusting others.  

It’s not necessarily that you have a hard time trusting others because they’ve let you down. Often, it’s the contrary – you have tons of people in your life who do nothing but support you. However, learning how to lean on others is still quite a challenge for you; you’re used to having to fight harder than everyone else, to take care of yourself no matter how exhausted you are, to make yourself get out of bed even when you really don’t want to or you feel like you can’t. Because you’ve had no choice but to be incredibly independent in everything that you do, it’s actually quite difficult for you to occasionally let someone else take care of you for a change.

4. Feeling awful, even when you ‘look fine.’

That’s one of the hardest parts about your invisible illness: having to explain to people why you have to go home from work, or skip the presentation, or miss your friend’s birthday party – and hoping they’ll understand and believe that you’re telling the truth, even though you might look healthy as ever on the outside.

5. Struggling to feel calm when you’re outside of your normal routine. 

You’ve learned how to cope with your illness and live a mostly regular life, as long as you stick to a certain way of doing things. Even when you’re feeling terrible, you can still get out of bed and go to work and be a person, as long as you make room for the things that help – doctor visits, go-to healthy meals, naps, relaxation techniques, extra sleep, whatever it is that helps you combat your particular struggle. So it’s incredibly hard for you to adjust when that routine is disrupted in any way whatsoever, whether it’s a vacation or a visit from a friend or a new job. You’re not afraid of change, but you are afraid of it negatively affecting the routines you’ve worked so hard to perfect.

6. Feeling anxious about ‘small’ things.

Car rides, dinner parties, enclosed spaces, a short walk, a guest in your home. The possibilities of what you will worry about are endless.

7. Doing the last thing people would ever expect you to do.

For the people in your life that do know you have an illness, they’re often surprised when you decide to run a marathon or go on a backpacking trip or sign up for a membership at a kickboxing studio. But in a way, your illness has been almost (alllllmost) a blessing in the sense that it’s caused you to be much more adventurous and to try many more things, simply because you’re so determined to not let it affect the quality of your life or to turn you into a passive person.

8. Trying to constantly reassure others that You. Are. Fine.

Because surprisingly, pity is one of the things you hate most about your invisible illness. You don’t like people feeling bad for you, you don’t want people treating you differently, and you really can’t stand when people walk on eggshells around you. Having an invisible illness often makes you feel different and isolated enough as it is, so you do everything in your power to convince everyone that you’re fine, just so that they’ll treat you like a normal person.

9. Stressing over stuff that most people never even think about. 

There are a lot of things that most people don’t even think about that end up causing you extreme worry, depending on how it affects your illness and your coping mechanisms. When you’re asking multiple questions about an impending situation, it can be uncomfortable or difficult when other people are looking at you like you’re crazy or high maintenance.

10. Being ten times more passionate about your dreams than anyone else. 

Because even if you can’t cure this disease, you can certainly make sure you still have an incredible and fulfilling life in spite of it. And if that’s as close to a ‘cure’ as you can get, then so be it.

Source: 10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness | Thought Catalog


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[WEB PAGE] 5 Tips and Tricks for TBI Caregivers

When someone you love sustains a serious traumatic brain injury often represents the beginning of a new season of life. As with any major change, it is rarely an easy journey.

Depending on the severity of the injury, you may find your loved one needs assistance with the most basic activities of daily life, such as feeding themselves, using the restroom, changing clothes and bathing.

In many cases of traumatic brain injury (TBI), the journey home comes after an extended stay in a hospital, skilled nursing or rehabilitation facility. For weeks — maybe months — life has been an emotional rollercoaster, and through it all you’ve had one goal in mind: getting your loved one home.

In the immediate aftermath of TBI, we often feel grief, fear, and concern. Family and friends flock to be by our side to lend support and assistance. This can mean picking up the kids from school, delivering meals to the house, or bringing snacks to the hospital. People want to help, and more than that they want to express their love and concern.

Unfortunately, even the dearest of friends will eventually have to shift their focus back to their own lives. It does not mean they don’t care or aren’t concerned, but life may seem a bit lonely compared to those earlier days in the hospital waiting room surrounded by people offering to help. Indeed, adjusting to life as the primary caregiver to a partner, spouse, child, parent or friend with TBI is difficult, but with these tips and tricks it isn’t impossible.

1. Stay honest

It is important to be honest with clinicians, family members, and your loved one with TBI about your own needs, fears, concerns and emotions. You may have thoughts or feelings that you’re ashamed of, and it’s important to remember that you are human and these feelings are normal. If, however, you find that these thoughts are impacting your ability to provide care to your loved one, you should seek input or guidance from someone you trust, like a therapist, close friend or relative or minister.

2. Work to understand

Understanding what your loved one with TBI is going through is almost as impossible as trying to show them what you are going through, but it is important to maintain perspective and patience. Rather than trying to understand, make a commitment to work to understand. Trying implies that you attempt and either achieve or give up, but working indicates a constant, ongoing period of growth and development.

3. Acknowledge limits

When you are staying honest you will likely find that you have to have some tough conversations about limits — your own, those held by your friends and family, and of course your loved one with TBI’s limits. Limits may not only be physical, but emotional and financial as well. These boundaries allow you and your family to adjust to and establish a new normal that works for everyone.

4. Seek input

As you adjust to the new normal of caring with someone with TBI, you will find that your circle of relationships grows rather rapidly. Remember to take advantage of these contacts and call on clinicians, your local or state Brain Injury Association, others you’ve met who have sustained a TBI, and certainly your fellow caregivers when you have a question, a concern or a need.

5. Ask for help

There is a difference between seeking input and asking for help. It is essential that you ask for help when you need it, and if you are staying honest you will know when these moments arise. Consider establishing a plan with a local respite care provider or other family members and friends so that if you find you need assistance, you have someone to call. Remember, you are the wheels keeping the bus in motion and, without you, things will come to a screeching halt.

Source: 5 Tips and Tricks for TBI Caregivers – Future of Personal Health


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[BLOG POST] Let’s Talk About Caregiver Depression (And the Courage It Takes to Face It)  

We would like to add our voice to the millions of others saddened at Robin’s passing.

His family and friends were privy to the magnitude of his disease. Dealing with the daily implications of addiction and depression takes heroic effort. Our thoughts and prayers are with those closest to him. Their loss is unfathomable. He was certainly bigger than life.

Robin Williams was a publicly troubled soul. His dependence on drugs and alcohol and his many attempts at recovery received a great deal of press. Under no circumstances is this tragic loss to be minimized as just another celebrity succumbing to the power of substance abuse. The man was depressed. As caregivers, we can be all too familiar with caregiver depression and how hard it is to deal with. Whether we are caring for someone who suffers or we are struggling with our own hopelessness, this prevalent form of mental illness has a great stigma attached to it. This stigma only adds to the problem.

There are people who believe that you should be able to will yourself out of depression; that it is a condition of choice—an easy excuse.

As someone who has been both depressed and has cared for a spouse with severe depression, I want to acknowledge those of you who, as carers, live with the reality of the severity of this condition every day. It is hardly an easy excuse. It’s painful. Sometimes it’s a triggered by physical illnesses with names like cancer or heart disease; but frequently it is the disease and those caring for someone who is depressed often go unacknowledged. We recognize you and want you to know we are here for you.

Depression. It’s a “brain disease” according to Dr. Drew, the celebrity rehab expert, who wants everyone to accept the fact that “Addiction and depression can be fatal.” We know caring for someone with depression can be frustrating because they want to shut us out so they can suffer silently; this leaves us to suffer as well. 

I can attest to the feelings of loneliness and despair I felt and can speak of my own problems with alcohol and drugs, that finally led to a diagnosis of depression. This all happened a very long time ago; now I can listen, and encourage people to be more open about their depression and the many forms it takes.

I know I never felt that I was taking the easy way out; it took courage to face each and every day.

Robin made us laugh. He made us cry. He touched us. His was a talent is one we will not see the likes of again and he will be sorely missed. Tragically, he couldn’t be saved and who knows whether mental illness will ever be a thing of the past. But, one thing we can do is to raise public awareness of a disease that affects an estimated 30 million Americans.It’s time we dispensed with the stigma of this disease and faced the dangerous reality of ignoring it. Depression isn’t funny.

Source: Let’s Talk About Caregiver Depression (And the Courage It Takes to Face It) | The Caregiver Space


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[Abstract] The trajectories of overall disability in the first 5 years after moderate and severe traumatic brain injury – CNS Web Site

PRIMARY OBJECTIVES: To assess longitudinal trajectories of overall disability after moderate-to-severe traumatic brain injury (TBI) and to examine whether those trajectories could be predicted by socio-demographic and injury characteristics.

METHODS: Demographics and injury characteristics of 105 individuals with moderate-to-severe TBI were extracted from medical records. At the 1-, 2-, and 5-year follow-ups, TBI-related disability was assessed by the GOSE. A hierarchical linear model (HLM) was used to examine functional outcomes up to 5 years following injury and whether those outcomes could be predicted by: time, gender, age, relationship, education, employment pre-injury, occupation, GCS, cause of injury, length of post-traumatic amnesia (PTA), CT findings and injury severity score, as well as the interactions between each of these predictors and time.

RESULTS: Higher GOSE trajectories (lower disability) were predicted by younger age at injury and shorter PTA, as well as by the interaction terms of timePTA and timeemployment. Those who had been employed at injury decreased in disability over time, while those who had been unemployed increased in disability.

CONCLUSION: The study results support the view that individual factors generally outweigh injury-related factors as predictors of disability after TBI, except for PTA.

Source: Traumatic Brain Injury Resource Guide – Research Reports – The trajectories of overall disability in the first 5 years after moderate and severe traumatic brain injury

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