Notes to carers about our injured brains

Every Stroke Survivor is the victim of a brain injury and as such there seems to me to be a number of things that it would be helpful for carers, family and those we come into close contact with tried to understand. I have compiled a list, after talking the subject through with a range of Survivors from those who have lived with the after effects for almost thirty years to a later generation who like myself are less than a year into this journey of discovery.

I think of the brain as a smart phone. And as such it has a finite capacity. This is the case even without the effects of a stroke. Just like a phone our brains capacity is split between a range of jobs. Parts of the brain's capacity is used to monitor and control / regulate the automated activity of the body; other bits of the capacity are used to run functions in the brain itself; further capacity is used for walking, talking, eating, etc. When one has a stroke the brain's capacity is reduced, not only that but a new function has been added. The brain has to find ways round the dead spots, which takes a share of a limited capacity. This being the case our brains make choices over how they are going to use their limited capacity. This choosing may result in us feeling a lack of energy so reducing the movement and level of activity or not remembering things or looking to avoid complex situations. There is one thing I would ask all those close to us to remember, that we have absolutely no control over the choice that the brain makes. None at all!

The list is by no means exhaustive and is in no particular order but I hope it gives a good starting point and even generator of questions.

We may need a lot more rest than we used to.

We get tired as well as a fatigued. Our brain finds it both difficult and tiring to think, process, and organise the wealth of stimuli that it is expected to on a daily basis. When the brain gets tired it tells the body to rest and thus reduce the flow of stimuli.

Even though we look fine our stamina can fluctuate.

Cognition is a fragile function. Some days are better than others. Pushing too hard can lead to setbacks.

Rehabilitation from a brain injury takes a very long time, sometimes years.

We may have been discharged from formal treatment, if indeed we received any, but rehabilitation continues long afterward. Please bare with us.

We are not being difficult when we resist social situations.

Crowds, confusion, and loud sounds quickly overload our brains, we cannot filter things as well as we used to. Limiting our exposure is a coping strategy, not a behavioural problem and certainly not meant to upset anyone.

When you ask what we have done that day we are not being difficult when we say "I don't remember" of "Nothing.".

We really want to tell you but we really do not remember. A day is a long time and at any stage of it our brain may have said that enough is enough and as a result will have failed to store the memories or our brain is tired and is having difficulty accessing the memories. It is sometime easier to say either that we don't remember or even don't know rather than "my brain hurts".

If more than one person is talking we may phase out.

This is because we sometimes have trouble following different “lines” of discussion. It can be exhausting trying to piece many conversations together. We are not deliberately being dumb or rude; our brains are being overloaded!

When we are talking we may appear to drift away or even switch off.

It is not because we are avoiding the subject; we need time to process the information and even “take a break” from thinking. Later we may be able to or even want to rejoin the conversation and hopefully be much more present for both the subject and for you.

Try to notice when our behaviour changes.

Our behaviour can be an indication of our inability to cope with a specific situation and not a mental health issue. We may be frustrated, in pain, overtired or trying to deal with too much confusion or noise for our brain.

Patience is the best gift you can give us.

The space your patience allows us gives us time to work deliberately and at our own pace; which in turn allows our brain to rebuild it’s pathways. Pushing and multi-tasking may inhibit that and cause us discomfort, frustration and even pain.

We will almost certainly stumble over words and thoughts.

Please try not to interrupt. Allow us the time to find the words we are looking for and complete our thoughts.

No matter how frustrating it is please have patience with our poor memory.

We need you to know that not remembering names, tasks or any other detail of daily life does not mean that we don’t care. It is just that our brains are using the capacity it would normally use for storing and organising memories for other things. It could also be that the part of our brain that is affected by the stroke, and is in fact dead, may be an area connected with memory.

Please try not to be condescending.

We are not stupid - well no more than we were before. Our brain is injured and does not work as well as it used to. The doctors are sure that our intellect has not been affected, its just that our brains don't work the way they used to.

We may sometimes appear “rigid”.

Our brains are rewiring and the need to do tasks the same way all the time is part of that. As is having order and a place for everything in our lives. It is like learning the route of a journey before even attempting the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy and not aimed to irritate.

We may seem “stuck”.

Sometimes our brains take time processing information. Coaching or suggesting other options may feel like it's helping but it’s almost certainly not. Taking over and doing things for us is not constructive; it stops our brains finding the route and will probably make us feel inadequate.

We know you mean well, but.

Unfortunately at the moment we work best on our own, one step at a time and at our own pace.

We will occasionally need to repeat actions; sometimes many many times.

If we repeatedly check that doors are locked or that the oven is turned off it is not because we have OCD but that we are having trouble storing the information.

We may seem sensitive, sometimes overly so, or even insensitive.

We know that we may appear an emotional lability since the stroke. But we prefer to think of it as a reflection of the extraordinary effort it takes to do things now. Tasks that used to be done on automatic and take minimal effort, now take much longer, require the implementation of numerous strategies and can often be a major accomplishments for us.

We need cheerleaders now.

In many ways we are learning life a new, just like teenagers and in some cases like toddlers. It may not be what you want from us but it's all we have just now. It will help us if you can find your a way to encouraging our efforts. Please don’t be negative or critical: we are doing our best.

Support our Hope.

We need hope. It helps us employ the many coping mechanisms, accommodations and strategies we need to navigate our new lives. Every single thing in our lives can seem extraordinarily difficult for us now. It would be easy for us to give up. We would ask you to take the fact that we don't and get up every day as a sign of our determination.

Background noise is a menace.

We would love to have our own quiet room; just as teenagers want there their own space. With significant background noise we can become overly stimulated which means we could become tired, frustrated, fatigued or even irritable and probably all of them.

Time for ourselves.

The fact that we seem to want to spend more time than usual on our own does not mean that we don’t want you in our lives and that we don’t appreciate the support and love that you give us. It just means that we need the time for us. Time where we can restrict the stimuli to our brain and hopefully as a result create the space it needs to re-establish the pathways it so wants to.

Finally, it is really important that you understand that we do not know when any of the above will appear. So, if it is days or weeks between episodes that's just the way that it is. It is also probable that we have not been telling you of all our headaches and other deficiencies which may mean that a lapse in memory appears out of the blue. You have to believe that we are not making anything up or indeed exaggerating the effects.

Arriving Home

Now a Stroke Survivor I was on the way home having spent a little over forty hours in hospital.

Friends from the village picked me at about 6:30 pm. The journey home was a strange affair: I kept being asked how I was feeling and to be honest I had no idea. On a basic level I was still able to walk and talk so could be described as OK. But on the other hand everything had changed and somehow I felt anything but! The friends asked if Kate was home. I had no idea. I knew she was picking up the step-daughter but as to whether or not they had arrived home? Pulling up outside our house the answer became clear.

Thanking our friends I entered the darkness of the kitchen to be greeted by the dog, Bruce. Normally I turn off unnecessary lights but this time I wanted lights and heating on. Even though I had not eaten all day I was not hungry, but definitely in need of a shower. Feeling refreshed I settled down, with Bruce, to await my family’s return, which happened at a little after 21:00 having stopped to pick up a Chinese Take-away which the step-daughter had been “dreaming of” while in the Alps. After hugs all round, questions about how I was feeling and turning down a plate of Chinese I headed for bed at about 21:30.

The next morning, 1^st February, was the one when Andy Murray lost to Novak Djokovic in the Australian Open final. We woke early to watch the match, but to be fair I had hardly slept. Within minutes Kate had the bag of meds and the Apple laptop out, wanting to investigate each drug and define how and when I should be taking them. All I wanted was to quietly watch the tennis and see what the day brought. She being the sort of person who needs things sorted, and I’m sure worried and confused, it did not go down well when I suggested that there would be plenty of time to do the meds thing later. She could not leave it, even after the appearance of the step-daughter, so in the end I went to watch the game in the extension. Within moments I had first the step-daughter and then both of them standing over me telling me I was being unfair, they were worried and so I should just do as I was told. We eventually did watch the game but with a tension you could almost touch. Once Murray had lost, Katw and I headed into the County Town, to buy a blood pressure monitor which I used for the first time at 3 o’clock (207/121) and again at 18:00 (204/111) when I also took my meds, setting a pattern that continues to this day.

On Monday, I rose at about 8:00 am, having been awake since five. The partner and step-daughter were talking in her room with the door open. I called out “Good morning” but got not a peep in reply. I took my blood pressure (183/111) before my partner appeared in the kitchen. I could not stop myself asking her why they had ignored me. She tried telling me that they had not seen me. At that moment the step-daughter entered and when I said, “Good morning” again she got herself a drink and headed back upstairs without a word. I asked my partner what was going on and was told that neither of them knew what to say. I was stunned! When I pointed out that, “Good morning” or even “How are you?” would have been a good start all I got in response was anger.  Again I was shocked. Surely they had discussed the stroke, and what to do and say, during the journey from the airport. But apparently not! I was completely floored and pointed out that if they were having difficulties what did they think it was like for me.

After the mess of the morning we agreed that lunch in town was in order. I was ready first and waited, not particularly patiently. When they eventually appeared their foul moods were obvious. Leaving the house I realised I had forgotten my gloves and went back for them but when I got to the car the two women where in the middle of a full blown slanging match. There was no way I was going to engage with that so went for a walk round the village. Twenty minutes later a crying step-daughter came to find me and we spent ten minutes talking, during which she admitted to finding it hard and having no idea what to say. My response was that whatever she was feeling I had the same doubts, worries and questions, if not more, and that the only way through this was to talk and take care of each other, all of us. We eventually made it into town and had a pleasant lunch. I took my BP when we arrived home at about three (207/118) and again at around six (186/112) with my meds and finally at ten o’clock (198/117) just before going to bed.

On the 3^rd, I woke at 4 am but finally got up just before six, setting a precedent for the coming weeks and months, eventually taking my BP at 8 o’clock (176/104). The day was much quieter than any so far. In the late morning I received a call from the daughter of a friend, who had died some years before. She had seen my Facebook post and was calling to see how I was. I have known her for all but one day of her life. My partner overheard the conversation and later I got into trouble for expressing things I had not yet told the step-daughter. My partner’s anger was not particularly ameliorated when I tried to explain that I had only been answering questions not previously asked. I probably should not have added that our friend’s daughter had an empathy due to her having lost her mother at a young age and being diagnosed with epilepsy.

I took my BP a further three times: at 3 o’clock (170/97); at 6:30 (197/111) and at 22:00 hours (197/106).

Wednesday was the day the step-daughter went back to her ski season. I woke early, got up and tried to write. The taking of my blood pressure was fast becoming a bit ritualistic and settled into a pattern of four measurements a day.

Eight in the morning (190/112)

Lunch time normally at 1 o’clock (178/102)

Tea or dinner time at 6 pm (187/109)

Then prior to bed at 22:00 hours (191/104)