My name is Tom, I am 25 years old and I am the survivor of an Acquired Brain Injury. Getting settled in at home is an important part of leaving hospital after suffering a brain injury. As I said in the last post, comfort, consistency in the environment the patient is in plays a vital part to any recovery attempt that is being made. However, there are different approaches to the recovery and each different approach has its own positives and negatives. I am going to talk through some of the approaches I went through in the hope you will see what could be gained from it.
The “Military” Approach
I will start off by talking about what it was we chose to avoid. After a brain injury, a patient will most likely be suffering from impaired cognitive function. There are different ways to approach this and one of those ways is to have repetitive, regimented, practice over and over, until those cognitive functions return to (not full which is nearly impossible after a severe brain injury) an improved capacity.
After my parents did some research, we chose to avoid the strict, regimented, routine. They found that many of the patients suffered greatly both in terms of their self-confidence: due to a continued attempt to do something that they simply could not do any more. It is bad enough to realise that you can not do certain things you used to be able to do perfectly well, but it must be even worse to be forced to attempt that thing over and over again even though you can’t do it. It must bring so much anger, sadness, frustration, not to mention resentment towards those that are trying to impose this “military-esque” (for lack of a better term) approach to trying to do something almost impossible: return a patient to the same state they were in pre-brain injury.
The second aspect where the regimented routine could cause difficulties was simply in the dynamic between carer and patient. Now this is definitely linked to the first issue and to comments I have made in earlier posts. It is crucial to maintain a good relationship between patient and carer. If the patient is under pressure and being forced to attempt things that are simply beyond them, they will begin to think that there is something they are doing wrong. It is essential that in the approach to the recovery, the carer should not necessarily understand (understanding a brain injury is pretty much impossible unless you have been through it) but empathise with the patient. It is critical that you do not make them feel as though it their fault, that you are angry or frustrated with them. For any carers out there, positive reinforcement and attempting to instill confidence in the patient as they approach, even, what may seem like a fairly routine activity is important to building up confidence so that they can move on to more ambitious tasks further down the road of recovery.
What We Did: Our ABI Recovery Approach
There were certain things that I had to do in my recovery for very specific and important reasons. I had to keep up with basic mental exercises (i.e. Sudoku puzzles, word searches, cross words, spot the difference etc.) to try and improve my cognitive function. I also had to do physical exercise as well, however I was slightly limited in this, as I had always enjoyed contact sports, which were then impossible due to my fragile skull (they are not impossible now but still have an element of risk to them). One of the things I really did do was eat. I ate a lot. I had lost 4 Stone (64 lb.’s) while in hospital so I needed to put some weight back on to make me a touch healthier.
These were certain things that I had to adhere to. However my parents had been doing their research on how to approach this kind of thing, we decided to go in the opposite direction of the type of the recovery mentioned on the first page of this entry. We decided to use a method of very basic routine. Times I got up, times I ate meals, times I would walk into town were all relatively routine and at specific times of the day. It was my spare time that was for me to decide. It was basically a way for me to use my spare time in a way that benefitted me most at that time, on that day. If I needed to sleep, I would sleep. If I needed a snack, I would have a snack. If I wanted to get out of the house, I would go out.
Having spoken to my parents about this though, I cannot truthfully tell you that this was some ingenious or innovative approach to tackling the aftermath of an ABI. It seems to me as though this approach was both as a result of not really being given that much information from Brain Injury Services where we lived, meaning we were left in the dark somewhat. I also have heard her say that this liberal approach to my recovery was something of an attempt to deny the truth. My mum has said to me that she thought when I came home from hospital everything would, after a while, go back to normal. To try and keep things going as normal seems to have been an attempt to deny the truth its inevitable victory. I think that there is, especially around where I live, a lack of support and assessment for carers (and brain injury services as a whole if you ask me!). I cannot say what those services are like in other areas of the country but here, we were somewhat left in the dark, to figure it out ourselves. I would be very surprised if it is not a similar case all over the country due to the enigmatic nature of ABI’s. It seems you can never really tell what will be permanent and what won’t, what will improve and what won’t, if you will be able to do certain things again or whether you won’t. So it may be that in approaching an ABI recovery for any carers out there, you may be left to fend for yourselves and figure out what is best for the patient. This can obviously work out well in some ways as you know the patient better than a doctor or a psychologist. It is about finding the balance; knowing when the doctor is telling you something that is very important that must be done, and even then, if there is a way you can approach that task that will ultimately suit the patient better than the way a doctor has suggested then try it your way as well. You need to be willing to think outside the box to get the best possible results for the patient.
If I were to be asked, “what is the best approach to a full recovery?” I would have to say that my answer would be that there is no full recovery, that’s how I would start anyway. What I would go on to say is that the path towards recovery is dependent on the individual; their strengths, weaknesses, likes, dislikes, their mental toughness and determination all play a significant part. The best approach would be to try and tailor the recovery towards the patient and what works for them. But one of the key aspects I would say to any carers out there would be to use your common sense and try to empathise with the patient as much as possible. Put yourself in the patients shoes, think of what they have lost, what they are coming to terms with, and what it would be like for your brain to be working fine one day, and then at ½ speed the next. The best advice I can give to any people looking after an ABI patient out there is to put yourself in their shoes and remember everything that happens along the way. Treat any difficulties or mistakes as a learning experience, not as a failure. Learn, adapt and adjust for the benefit of the patient.
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