Monday, March 30, 2009

Brain Injuries: The Two Steps Forward and One Step Back Dance

There are many instances where it will be 'two steps forward and one step back'. This will be especially evident in the first year following an injury. However, it is probably something that will continue throughout the entire journey of life with a brain injury.

Recently the incidents with my partner of 'two steps forward and one step back' have been fewer but nonetheless have made a difference in his progress towards recovery. About one and a half years post-injury, I felt we had a handle on the 'lack of motivation' issue and he did seem to be doing quite well.

During the Spring time and into Summer, the weather was nice; he had several interesting projects to work on; a friendly neighbor to converse with and his mood began to improve. But as the seasons changed from Fall to Winter and the weather became cold and nasty, the neighbor was no longer outside and my partner's motivation level began to take a drastic turn backwards. He went back to doing what he had been doing previously - dozing on the couch, playing solitaire and occasionally doing crossword puzzles.

Now, two and a half years post injury, he is looking forward to when I have time to go away - so he can relax - which is what he has been doing all Fall and Winter. Perhaps when Spring finally arrives, he will return to his past Spring time level of motivation.

Another area where he had been making progress and where he now seems to have gone backwards is indicated in the work he does. He had done small projects within the home which he had taken care with but recently he painted the powder room in a way that looked as if it had been done by someone with little or no painting experience. Also, over the last year and a half, he has occasionally gotten small jobs to do, but recently he has had to go back and redo things that haven't been done properly. As a result of this no doubt, the jobs are becoming fewer. This may only be a momentary 'one step backwards' and hopefully he will eventually move forward again.

Around his two year post-injury period, there seemed to be a general spurt of improvement. He seemed to be more comfortable when in company; he seemed more interested in things that were happening and he became more interactive as far as communication. Now six months later, there has been a backwards slide in this area as well.

It seems that with brain injuries, there continues to be the 'two steps forward, one step backwards' dance with plateaus and sudden spurts of improvement. I anticipate that where he has taken backward steps, there will also be a few steps forward in the future as he makes another burst of improvement.

Sunday, March 29, 2009

Don't Take It Personally

Not taking it personally, together with setting boundaries, is extremely important for those living with a family member who has suffered a brain injury. Coping with the changes in your loved one is difficult enough without taking to heart verbal abuse that you know they would never have said before their accident. They mean it no more than you want to hear it. But since you do hear it, the best thing to do is relegate it to that portion of your memory bank where things that aren't worth remembering go.

Those who have experienced brain injuries are no longer the same person they were before their injury. We had many incidents in the early stages, brought about by frustration and anger, and although they do not happen as often, there is still the occasional time that it does. At those times, I must remember to remain calm; to consider that his bad behavior is a result of his brain injury and that he has been left with deficits that he is unaware of or at the very least, has not as yet acknowledged, not even to himself.

It can also come about when there are difficulties with the thought processes. Written instructions of any kind were often a prelude to bad behavior and anger where at times in exasperation, he would throw the offending instructions at me. Sometimes he'd bare his teeth and glare at me when he was angry or, refuse to eat meals put in front of him or, become angry at not being included in something that he was physically or otherwise unable to do. I am thankful that angry, hate-filled looks don't kill.

He had also on occasion chosen to sit in another area of the doctor's office from me because he was angry at my insistence that he needed to go; and he has refused to talk to me, sometimes for a whole trip, because he was angry or frustrated.

Depression plays a large part in behaviors such as these. It is a very common problem with brain injury. If problems such as these persist, it would be advisable to have the injured family member assessed.

Saturday, March 28, 2009

Brain Injuries and Motivation

Lack of motivation is quite often one of the deficits of frontal lobe brain injury. It is a monumental task to try to get someone motivated to do something if there's nothing they really want to do. It is particularly challenging when they don't want to be motivated in the first place. It's like trying to beat a dead horse. No matter how hard you beat that dead horse, he's not going to get up.

During the first year after my partner sustained his brain injury, life was a roller coaster ride. By the end of that first year though, his confused periods became fewer and his moods improved little by little but as time progressed, I gradually became more aware of his deficits.

A brain injury is a hidden disability affecting a person in a way that will sometimes make them appear, to others, to be lazy. This apparent laziness is the result of lack of motivation. Those with frontal lobe damage very often experience this deficit along with the accompanying inability to plan ahead. They sometimes also exhibit poor judgment. For this reason, lack of motivation can be a major concern for family members.

My partner, following his brain injury, had no interest in doing anything. For most of his days he sat on the couch and dozed off and on, occasionally playing a game of solitaire. He wa bored. When I made suggestions of what he could do, he had no desire to try them.

I recalled when one of my children was ten months old, he had no desire to learn to crawl. Being easy-going and placid by nature, he was content to sit and watch the world from his blanket on the floor. But he was attracted to the budgies in their cage. One day I placed the birds in their cage on the floor, set him in 'crawl mode' and he was off. I considered how I could translate this knowledge into something that would work with my partner. Desire, I realized, had to be the motivating factor.

Being a strong believer in 'lists', I made up a list of things he had previously enjoyed doing. By having several tasks written down, he now had choices. It was a checklist with a beginning and an end when he was able to cross off the completed task. The result was a feeling of accomplishment (if not for him, then for me). The list idea did help somewhat with his lack of motivation.

This is a big step for those with a lack of motivation deficit. Their efforts should be supported and encouraged. And if things don't go well, stay calm, don't overreact and remember to take one day at a time. They are baby steps towards recovery.

Most people suffering from brain injuries are unaware, (at least in the initial stages), of their deficits. As one neurologist said, 'How do you get someone to work on a problem they don't believe they have nor care about?'

Wednesday, March 25, 2009

Frontal Lobe Brain Injuries and Short-Term Memory Loss

Short-term memory loss is almost always a result of frontal lobe brain injuries. Shortly after the injury has happened, the short-term memory loss can be so severe that the memory of visitors will last only until shortly after the visitor has left, and memories of what has last been eaten will be irretrievable.

This type of memory loss affects areas you may not have thought of. In my partner's case, he no longer will watch television other than the news. Because of his short-term memory loss, he is unable to follow the necessary sequences of a program or movie to be able to understand what is happening. He also no longer plays games with the family as he used to do. He also, until very recently, avoided socializing because it was difficult to interact in conversations when thoughts from the beginning of a conversation were lost by the end of it. It made continuation and inclusion in a conversation very stressful. He has improved in this area when in the company of people he knows well.

The more usual short-term memory difficulties are remembering appointments. Using a daytimer, calendar or making a list are some of the ways this problem can be solved. The additional problem, however, is to remember to use it. Another example is when something has been mentioned the previous day and cannot be remembered the following day.

My partner plays the game of pretending to remember. He'll say, "Oh, right, I remember." He will continue to play the game even when I have told him something that I had not mentioned previously and he 'lets on' that I had already told him by preteding to 'remember'.

There are many exercises that can help the memory. One is to have him/her look at a picture for 60 seconds to begin with and then ask them to remember as many things as they can about the picture. As their memory improves, shorten the time. And when they have met that challenge, change the picture.

Another memory exercise is to write down a list of twelve items. Let him/her look at the list for three minutes and then ask them to write down as many of the items as they can remember. As they improve and are able to remember more items, have them do it in less time. Eventually change the list and do it again.

Short-term memory loss can be very upsetting but over time and with practising memory exercises, it can improve.

Tuesday, March 24, 2009

Roller Coaster Ride With Brain Injury

In the beginning, coping with brain injury is a roller coaster ride. Although a tragedy for the injured person, it is an equal tragedy for the family.

Because of the lack of information available, the family member closest to the injured person will likely feel very much alone. When my partner had a very serious motorcycle accident, we were fortunate in that we were surrounded by a huge family support system. As one who has gone through this difficult experience, I would highly recommend enlisting the help of a support group (if there is no strong family support) for assistance with the monumental changes you will be facing in your life as well as in the life of your loved one.

There will be difficulties in adjusting to these changes as well as difficulties in getting the necessary answers to questions. As the 'healthy' person, there will be many crucial things that are necessary to do. You must 'ask the right questions', 'take control of the situation', 'be proactive', 'be your own advocate for your injured family member', and 'realize the necessity of having support'. These will be vital when battling cognitive and behavioral problems, frustration and anger management difficulties, confusion and short-term memory loss as well as other brain injury impairments.

It will often be two steps forward and one step back and although this is discouraging, that is initially what happens. It will be important not to take things personally when your brain injured loved one becomes angry or verbally abusive. It will also be necessary to set boundaries for yourself. It is equally important not to feel guilty if you wish time for yourself or if you occasionally feel frustrated; your life has changed too.

I was not aware that someone suffering from a brain injury could change so drastically; that he couldn't remember who had visited a few minutes after that person had left, and that I would be treated like someone he hated most in the world. I did not know this is all very typical behavior by those who are suffering from a brain injury.

There will be adaptations and adjustments that will be necessary to make and there will be many 'bumps in the road' but things do eventually get better.

Monday, March 23, 2009

When Tragedy Shakes Your World

Immediately after your loved one has been involved in a serious accident, your brain doesn't want to think about what has happened. Then as you come to terms with it, you will have many questions. In the beginning, there are few answers because no one really knows. 'No two brain injuries are alike,' they tell you. Being told this doesn't help; you want answers. What do you do when life as you knew it changes? At this point you see no light at the end of the tunnel and you are not sure if there ever will be again.

I received our life-altering telephone call less than two hours after my partner had left our home on his motorcycle. It was a phone call no one ever wants to receive. Driving to the Emergency Ward, I cried copious amounts of tears and prayed as I tried to stem the flow. When I arrived, the Social Worker led me to an empty Family Room. I was told they were stabilizing him as he'd lost a lot of blood. She said he had many injuries as well as his brain injury and that a doctor would come and talk to me soon. Alone in the room, my only company were the terrifying images that plagued my thoughts until one by one my family began to arrive. During this terrible time, I realized how fortunate I was to have so many supporters.

When tragedy happens, and after you get over the initial shock, most people look for hope. They want confirmation that their loved one will get better; that things will go back to the way they were. Neither doctors nor nurses will guarantee how things will be in the future. In the beginning, with swelling in the brain and most often bleeding, it is difficult to judge the severity of a brain injury. There had been shearing of my partner's brain and I was told they would not know until he was walking and talking again.

During this period of time, I asked questions but realized that the more questions I asked, the more different opinions I received on both his injury as well as his recovery prognosis. Hope was not my constant companion during those early months.

After your loved one's injury, there will be many concerns. It will be necessary to express them so you can do the best you can in helping your family member become well again. I found most of the medical practitioners were approachable and willing to listen to my concerns and to help me find a solution. But I did have to ask the questions.

By two weeks after his accident, I knew our life had changed. He was now awake but with shock I realized he had lost ten years of his memory. The frightening thing was that we hadn't known each other ten years previously. But interestingly, because the brain is so amazing, most often he could tell me what my name was when asked.

With his increasingly longer periods of wakefulness came confusion and anger. Restraints were necessary. He went on tangents where what he said had no basis in reality. He had to have a sitter because he refused to do as he was told and continually attempted to pull out his tubes. There were many visitors he did not recognize; some had been friends for years. I brought pictures and items into the hospital that I thought might jog his memory. Some seemed to work, many didn't. About six weeks after his injury, he finally realized what year it was - mostly, I believe, from being told repeatedly. Thankfully he gradually improved and by the time he came home from the hospital, he was able to recall most things from that ten year memory loss.

There is no doubt that the first year is very difficult but bemoaning the tragedy will not make it go away. Trying to do the best you can for your loved one will help. One of the most important things I learned from my research during those early months was that the sooner after an injury a patient can do cognitive exercises, the better his prognosis for recovery will be. I tried daily to help him with these exercises; he was very often verbally abusive. I believe very strongly in the value of my insistence that he do those exercises and I give full credit to them as the reason my partner is doing as well as he is today. As a result, we discovered there was a light at the end of the tunnel.

What Is A Brain Injury?

The statistics are heartbreaking. Every 23 seconds, one person in the United States sustains a traumatic brain injury; and 1.4 million Americans sustain a traumatic brain injury each year. The symptoms of brain injury are many but every brain injury is different.

Some of the symptoms are: short-term memory loss; fatigue; insomnia; apathy; social withdrawal; irritability; frustration and anger; slowed thinking; inability to carry out routine tasks; inability to learn new facts; disorganization; diminished attention span; poor concentration when there is two or more stimuli; impaired judgment; depression; anxiety; lack of motivation; perseveration; lack of empathy; rigidity of thinking; and headaches.

Every brain injury survivor has a story to tell and many have learned ways to adapt and adjust to their deficits. Some may never learn. Those who are attempting to deal with their problems discover how difficult it is to concentrate on the process of thinking. They have to learn to maintain attention and stay focused. They often have difficulty in comprehending information as it is presented and in integrating any related information. Many will also have difficulty in following the plot of a story.

Most brain injury survivors will have problems with extreme fatigue and will require what appears to be an excessive amount of sleep. This will be critical in order to have improved cognitive functioning. They often have difficulty in interacting emotionally with other people; they will also usually have difficulty putting names to faces. In general it is agreed that it is important to attempt to learn compensatory strategies. It is all about achieving a new normal as it is unlikely they will ever go back to who they once were.

With brain injury recovery, there are no miracles. It is step-by-step gradual improvements with some occasional blacksliding. A great deal will depend upon the attitude, courage, determination, patience, strength and the willingness of the survivor to accept new possibilities, potentials, goals and expectations. They must also be aware of their limitations. It will help if they have a strong desire to achieve a specific goal, i.e.: perhaps to play golf again. However, it is unlikely that any of this will be possible if the survivor has not as yet accepted what he has lost and come to terms with it.

Because brain injury is considered a 'hidden' disability, it is interesting that often only the person who is closest to the brain injury survivor will be aware of the full extent of the disability.