10 Ways to Support a Brain Surgery and Stroke Survivor
A brain injury or stroke can affect people in different ways, after which the recovery journey and long-term disabilities can vary from mild to severe. A stroke is essentially an attack on the brain and occurs when part of the blood supply to the brain is cut off, causing damage to brain cells and the way the body operates. After a trauma to the brain, rehabilitation is often needed to encourage neuroplasticity which is the ability for the surviving brain cells to pick up the slack for the ones that were damaged and help retrain the ability to carry out functions.
It’s not uncommon for these traumas to cause issues with mobility, cognition, memory, speech, fatigue and even emotional or personality changes, but it is surprising how suffering a stroke or brain injury can create a lot of pressure for the person supporting or caring for them. The news of my stroke conjured up wildly different reactions from people, with some admitting to me afterwards that they just said nothing due to fear of saying the wrong thing. But effective communication and a strong support system can really promote recovery, acceptance and adaptation for someone who is recovering, and going through this change in their lives.
Below are ten little encouraging words or acts that can really help a person through this difficult time, as well as helping you to cope with the changes too.
1. Remind them that life is not a race.
It might be a cliché and something we’re told over and over, but being reminded of this during such an unsettling time in a person’s life can really help provide hope for the future. Prior to my surgery I was in a really strong place in my life. I knew exactly what I wanted, and everything was mapped out with a clear plan on how to achieve my goals. But then I found out I needed brain surgery. Whilst going through months of rehabilitation to relearn the basics, I was desperate to get back on my expected path and do all the same things my friends seemed to be doing. But constantly being reminded that life is not a race helped to really ground me, accept the path I was now on, and come to terms with my challenges quicker.
2. Genuinely congratulate the achievement of small milestones.
After a stroke, brain injury or trauma of some kind, it’s unpredictable how much someone will be able to manage or what their improvements may look like long-term. Instead of setting unreal expectations for them or pressuring them into the belief that the ‘sky is the limit’ for achievements, it’s more beneficial to offer support and acceptance of their current situation, regardless of the long-term outcome. After my surgery, I was largely frustrated by my recovery journey as some days it didn’t seem like I was progressing at all. My sister would constantly remind me that little daily progress would add up, and eventually it did. But she was also very aware that my recovery would take time and because of that, she genuinely celebrated when I mastered something 'simple' like finally using a straw, or feeding myself again. And it’s her genuine celebrations of these milestone, and recognition of the fact they were huge to me, that kept me pushing to achieve more, as opposed to giving up completely.
3. Make future plans with them.
Shortly after my surgery, my best friend asked me to be Godmother her little girl, as well as to be her Maid of Honour. Whether or not it was meant with this intention, encouraging me to make future plans really gave me something to look forward to and showed me that my friend fully believed in my recovery and the possibility of me living a ‘normal’ life again. Those plans encouraged me to push forwards and avoid delaying or sitting out on events I no longer felt possible.
4. Rephrase your offer to help.
Instead of simply reminding a loved one that you're there when needed, rephrase your offer to help by asking "when can I help you?" Speaking for myself, I know how much of a burden I felt when needing help for the smallest of things whilst recovering and this often kept me from asking for it. But volunteering to help a stroke or trauma survivor by asking “what can I do for you on Thursday?” and giving them a designated day, is much more likely to result in them taking you up on the offer, and feeling less of an inconvenience.
5. Ask for their advice.
In the early days of my recovery, friends avoided coming to me with their problems as they felt that what I had going on was a much bigger crisis. They thought they were doing me a favour by concealing their issues from me, but all this did was heightened my awareness to the life-change I was suffering, and made me feel even more out of the loop. I was the same person inside, and didn’t want my friends to shelter me or treat me any differently because of my physical differences. No longer asking my advice or opinions made me feel irrelevant and disregarded. Part of the reason BITB really helped me, even now, is that it forced me to focus part of my energy on working through my challenges and connecting with others to see that I wasn’t alone in mine. Therefore, asking a friend for their advice, opinion and expertise, regardless of their trauma, will allow them to feel needed, important and reintegrated.
6. Make a plan to hang out with them.
Similar to making future plans, just asking someone that is recovering from a stroke or trauma if you can spend some time with them, either by walking to the park, going out for lunch, doing something fun or visiting them with no obligation, allows them to see that there is a future past their illness. It lets them accept their new chapter, adapt to any challenges they face and shows them that life is continuing, and can still be enjoyed.
7. Be patient.
After a trauma, the brain rewires itself through neuroplasticity and transfers functions from healthy parts to the unhealthy parts so they can eventually aid the relearning of functions. But this takes time, and how long varies for each person. This means that even if it takes someone recovering from an illness twenty times to relearn something ‘simple’, be patient and know that the trauma to their brain has only affected their ability to formulate things, and not their intelligence. Don’t take it personally if a stroke survivor doesn’t remember something you told or showed them a month, day or hour ago. Instead, be mindful of the fact a stroke or brain injury survivor often has to relearn so many things for the first time again, and just as you wouldn’t lose patience with a child when showing them things for the first time, avoid losing patience now.
8. Encourage them to try things for themselves, when safe to do so.
Don’t automatically jump to help a recovering person, or do things for them, as whilst this can seem helpful in the short-term, in the long-term it encourages learned-nonuse/unilateral neglect. What this means is that stroke patients in particular often compensate for muscle weakness by using their unaffected side to carry out most activities. But stopping the use of certain functions means you lose them, and constant movement is key for recovery. Although it can be frustrating to watch a loved one struggle or take extended time with a task, avoid taking over completely and instead help or encourage them to try for themselves. Be patient if you see frustration creeping in and gently remind them to utilise their affected side whenever possible.
9. Accept who they are right now.
Various emotional and personality changes occur after a stroke or brain trauma. The survivor will often be grieving the loss of their identity, as well as ability to do certain things. Rather than rushing them back to ‘normal’ as expected, show your support for who they are right now, and not who they were in the past. Don’t hold on to what was, or what they were once able to do, by constantly reminding them of what they lost and need to get back. Instead, encourage the start of this new chapter together and celebrate their achievements from this moment forward.
10. Let them express all emotions.
It’s normal after a devastating illness to struggle with adaptation and suffer an array of confusing thoughts and emotions as a result. Particularly after a stroke, survivors can develop emotional lability as a result of damage between the brainstem and frontal lobe, affecting the ability to control various outbursts. Acknowledge that your loved one isn’t all or nothing in relation to their current emotional state and they can unexpectedly and erratically flit between good days and bad days. Adopt a higher level of empathy than normal and put yourself in their shoes as best as you can, asking yourself ‘how would I feel if suddenly everything changed for me and I became uncertain with no control?’ Display compassion, and allow loved ones to grieve and display true emotions without fear of judgement or automatic suppression.