Did you experience a post-rehab slump?

Diana
Diana on Monday, August 10 2015
4 Comments

Survivors of a [stroke] brain injury often make excellent recoveries through a positive attitude, hard work and family support. But once the rehabilitation is over there is often a sudden slump, leaving the survivor with depression, despair and suicidal thoughts.

 

The crash came three years later. I'd always been a really positive person and I threw myself into rehab. The doctors were amazed at how well I did. Even after two years I kept working on new strategies, although my brain had ceased to improve at that point. Then suddenly I came to a point where I couldn't bother any more.

 

I tried to kill myself last year, and my family got me to counselling. I don't think it's helped-there's just no point really if I can't work or have friends. During my rehabilitation I was pretty positive about the future but there's nothing now. This is it. No more improvement.

 

I know I should be happy, and I was for a long time. I'm one of the lucky ones. A mild brain injury, a big recovery and I'm even back at work, my family is supportive and most of my friends still hang around. But I've lost big parts of me forever: my memory, energy to do things, and my sense of taste and smell. A year after discharge the loss hit me and I've lost the plot since then.

 

Why?

The major reason for the post-rehab slump is psychological. The individual with the brain injury is told that a positive commitment to rehabilitation will maximise results. This is a clear goal, and more importantly it is usually easy to see the progress resulting from hard work.

The brain does its best to heal itself to a limited extent for a year or two after the injury, which contributes to a sense of progress. Even beyond this point, improvement can still be made by working on the strategies that will compensate for the cognitive deficits-memory prompts, anger management, pacing themselves and relaxation techniques.

 

But inevitably there comes a point where visible progress tapers off, and it is apparent that this is as good as it gets. The survivor has been focusing so much of their time and energy on this goal of recovery, and now it has been reached. The logical step is to set a new goal, and this is the point where the limitations of the injury are so apparent.

 

Where to from here?

No matter what the new goal is, it will be limited by the effects of the [stroke] brain injury. Employment may not be possible, or only on a drastically reduced level. Any big project will be difficult due to the impaired ability to plan, concentrate and remember. Goals involving social activities will be hampered by reduced self-confidence, social skills and energy levels.

 

Who is this stranger?

Particularly for those who have done well in their rehabilitation, this new self can be very difficult to accept. Despite being told things will never be the same again, there is the secret hope that possibly enough hard work during rehabilitation may still make good things happen. So being confronted by the reality of this new self can be a crushing disappointment after many months of measurable progress. Some describe the new self as a stranger living in their skin, and knowing that this will not change can be hard to accept. The [stroke] brain injury itself can add to the impact of this disappointment as anger, depression and intolerance of stress are often much harder to handle post-injury.

 

Accepting the New Self

Particularly for those who have done well in their recovery, this new self can be very difficult to accept. In a way this is the final stage of rehabilitation and often the hardest. Coming to grips with this new identity and even learning to appreciate it is a very difficult step, and many people are unable to make it.

 

For some, the answer is focusing on a positive attitude. Cognitive deficits are viewed in a different way to see the strengths that can arise. An inability to work means opportunities to develop hobbies such as art or gardening. Lack of energy means taking more time to 'smell the roses'. Wrestling with depression gives an insight into the pain and suffering of others.

 

Other survivors have made sense of their experience by seeing how they can help others. They may attend or even initiate a support group where they can share their hard-won lessons with others, or write of their experiences. For those who can work, an option is casual work supporting others with a brain injury.

For others, a spiritual approach or commitment to self-improvement may be the key. Each cognitive deficit is seen as an opportunity for self-growth and further development, not just as a disability. Remarkably, people often find that even many years post-injury, they still find themselves gradually improving in some areas with this approach. Some even come to appreciate how a brain injury has made them a more thoughtful, stronger person because of the many challenges they have faced and worked through.

 

What Can the Family Do?

Families can help their loved one by putting strategies in place to avoid or lessen the post-rehabilitation slump. Work with them on developing new goals and activities before rehabilitation tapers off. Contact your State Brain Injury Association for support groups and activities that may exist in your area. A counsellor can also help the survivor with their new identity. As one survivor put it, "For survival we must let go of what was, in order to become what we will be".

 

Article via www.synapse.org.au 

4 Responses

Hi,

Well this is a challenge in itself to look and respond to some of the issues that we as survivors come across.

Yes it is hard to accept the "new you", but it's not the end of the world. We make the best of what we have, what we can do for others and set we our own realistic goals.  

 

 

Rehabilitation is an on going task. Yes some days it is harder than others, especially when the OT\PT isn't there to push us along.  End of the day, they are only there to help and show us the correct way of doing things.  It is up to the survivor to achieve more and set their level of acceptance.  Personally for me, I will not accept second best for me or anyone else, especially when others have dedicated so much time and energy in getting me better.  No one said it was going to be easy. Sh*t, life isn't easy, even without having suffered the stroke.  I have to help others who have suffered this trauma. 

 

It is OK to have a down day, but as long as you don't allow it to take hold of you completely.  It is just a non-productive day, we do deserve a rest.  

Just think of what you want to achieve, if it is a hard task, break it down into smaller pieces, so it can be achieved, just may take a little longer.  EG for me I just wanted to be able to walk unaided, then walking normally, then to be able to go for a walk with my wife and dog and then finally to be able to walk my dog.

 

I have just suffered my first  day of major fatigue. I honestly thought I was  having another stroke, so did my carer\wife and kids. I was just totally exhausted from trying so hard for so long, both physically and mentally, hiding the fact that I have had a stroke, battling with my own demons and wondering if\when will another stroke occur.  I just couldn't accept I couldn't do the things like I did pre-stroke, I haven't lost the war or battle yet. 

 

I think everyone goes through the thoughts of am I going to be useful to others, myself or society. Personally, I've dealt with suicide for many years in a professional sense.  I understand why some people do it, but never condone it. There are plenty of people around who love and care for you and  can help during those dark periods of despair, you just have to let people in and let them help. We don't survive, just so we can attempt or succeed at suicide, just think about all the time and effort one has done to get to their current status. What about the ones we leave behind, they are the ones that suffer the most.  Of course when we do die, people will be upset, but at least they will say; The survivor didn't stop trying and were doing the best they could with the resources available. 

 

I was forced to undertake a return to work medical assessment, work still doesn't know I've had a stroke.  They put my limp down to knee surgery. The Doctor, thought they had the right to ask if I was suicidal, all because I collapsed at work and wouldn't release anything about my medical issue. Now this was the great thing, I let a barrage of anger fly.  I have never had or shown any tendency to commit suicide, no depression, always happy and good attitude.  Work assessment doctor thought it was OK to ask, then did state, definitely no tendency for self harm. 

 

So much emphasis is placed on the new you!  What, did the old me wear out and have I been replaced with a new and exciting new model?  I don't think  so, I am still the same person!! Yes I have new challenges, I may have memory loss or can't do things for myself at the moment, fall over or have a walking stick or wheel chair - Gee z, I look at it as perhaps some of the memories weren't worth holding onto, gives me the opportunity to make new and better ones. If I have some sort of impairment. big deal, yes embarrassing, but I can improve on them or die trying.  

 

Yes I have brain damage, my brain, like most was under utilized.  Just means I have to use the parts of my brain that are still functioning and hopefully I can adapt that part of the brain for some of the things I am struggling with. Again rehabilitation is an ongoing saga, you never stop trying to achieve more or improve things, so many Dr's will say it is impossible, just accept what you have and your not going to get any better. Who do they actually think they are saying this to me? I say show me where in the service manual it says my brain can't adapt.    It is just a new worthwhile challenge and experience to undertake.

 

As a survivor we need to find something to hold onto, we don't all fit into the same mold.  whatever it maybe, spirituality, gardening, pottery, learning a new skill  or even further education.  It is up to you to find what is right for you and what makes you want to achieve more.  Remain positive and if you can't talk to someone who understands and can empathize with you. 

 

Talking with other positive survivors on what they went through or are still going through, this can put your situation into some sort of prospective.  It is easy to be negative, lazy and accept second best.  The fact is, surround yourself with the people who care, love you and accept you for who you are, not what you have been left with.  Consider yourself lucky if friends and family have suck around since the stroke. Too many people are judgmental and embarrassed to be around someone who has an impairment. In my view they are the ones with the impairment and lack compassion and empathy.

 

Family is the most important and are the first to wear out.  Be considerate in your demands on them, consider what they are going through as well, it is not all about the survivor, it is about you, your family and friends.  We can't do the best without the support of family and friends

 

Be kind to yourself and others

 

 

I was busy replying when I lost the lot !  Shall begin again. Emotional lability is a deficit of my stroke. Catches me unaware at times  when the tears flow suddenly. Happy moments can set the flow. I have developed strategies for coping. I have explained the problem to family and friends. Most important to do so. Relaxation and meditation techniques help. Anti depressants  help as well. These tearful days occur when I have been fatigued and often missed my afternoon rest. Sitting in the garden reading a book calms me down . If necessary I allow the tears to flow as they dry easily in the breeze and disappear during a morning shower.    Jenny

I was busy replying when I lost the lot !  Shall begin again. Emotional lability is a deficit of my stroke. Catches me unaware at times  when the tears flow suddenly. Happy moments can set the flow. I have developed strategies for coping. I have explained the problem to family and friends. Most important to do so. Relaxation and meditation techniques help. Anti depressants  help as well. These tearful days occur when I have been fatigued and often missed my afternoon rest. Sitting in the garden reading a book calms me down . If necessary I allow the tears to flow as they dry easily in the breeze and disappear during a morning shower.    Jenny

Rehab is great in that as well as the physical it is also a great mental stimulant.  My husband has a physio as part of his care package.  I think this is the best move we ever made.  A good physio helps to keep the spirits up as well as maintain, and in my husbands case, keeps improving him physically.

He had a very severe stroke and was sent to a nursing home. (we got him home fairly quickly)  He is now at home and after 2 years is still improving.  I am sure this wouldn't be happening without the aid of his physio

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