I wrote before in Breakdown of relationships after a brain injury encouraging survivors not to write off individuals who have become more distant since their injury. For as I have seen in my own personal example, things can change, and as long as the bridges haven’t been burnt, there is room for that relationship to be healed. Today I want to talk to the friends and family members who are finding it a real struggle to deal with the brain injury survivor in their life.
It can be so overwhelming caring for someone who is fighting for their independence
That saying “If you want something done, do it yourself” I think summarises the frustration that one can feel when they desperately want to help someone who is struggling, but won’t let you in. You know you could do it in less than half the time that it’s taking them, and then you don’t have to listen to the moans about it anymore because it’s done. Hands up who has felt like this; both of mine are up and waving like an overenthusiastic class nerd!
I remember sitting my Dad down and discussing getting him help so he could live at home as long as possible as Alzheimer's was causing him problems. I explained how it would make his life easier; he would still be in charge and how it would relieve the stress on me. “Yes, that’d be a reasonable idea, let’s do it.” Brilliant, he agreed, and after letting him meet them first, I arranged for them to visit daily and prepare his dinner.
But then I got a phone call on day one from the team. He wouldn’t even let them in the front door. I was flabbergasted! He’d agreed to it and I’d explained how this was for both of us! I was unimpressed. He’d said the right things to my face, but it felt like he’d then done a U-turn the moment my back was turned. Frankly I was annoyed at him. However, what I had to try to remember here was that he wasn’t being malevolent. He might have forgotten our agreement, or just didn’t feel like he was ready at that moment for what he considered an invasion of his privacy. The important thing to know was that he wasn’t trying to upset me. This can be the same for a brain injury survivor. Just because it seems like they are doing a U-turn and being difficult, this isn’t always the case.
Agree on solutions
A loss of independence can feel like a loss of identity, and believe me, that’s soul-destroying. So firstly, I just want to highlight that if your survivor is being stubborn, take it as a positive that they are still strong-willed.
When someone is having to accept such a massive change to their lifestyle, they must feel included in the decision-making process. Work together with them by giving some options to them and discuss the benefits and pitfalls of each. Then it becomes a solution that they have chosen rather than something that is being done to them. And be aware that, just like with my Dad, it’s still going to take time for them to become comfortable with it. They will get there with your support, just try to be patient.
Use positive language
Often brain injury survivors are already feeling ashamed about their shortcomings and therefore are highly sensitive to having them highlighted. You can get around this by being assertive, rather than passive or aggressive. This means you explain your position in the matter whilst acknowledging their feelings. If you’re too passive you won’t help them understand your situation, and being aggressive makes them feel like you have pushed their feelings aside.
But good communication is more than talking; it’s listening too. “You have two ears and one mouth for a reason” is a very apt saying. Make sure you understand what their objections are and what they are more comfortable with. Don’t just assume, make sure you have heard what they have to say. And if the answer is no, don’t continue to push as it will only cause conflict.
Instead, distract them with a positive activity that they enjoy so that you can come back to the discussion later. Go back to it like it’s a fresh idea, rather than reminding them that you brought it up before. You don’t want to make them feel like it’s a “told you so” situation; otherwise they might stick their heels in even more.
Move the guilt away from them
No one likes to feel like they are a burden, so inevitably, brain injury survivors become weighed down by feeling guilty that they are so dependent on others suddenly. A way to make it sound less like you are complaining about them is to pose it as you are asking them for their help.
Whether that’s to accept more supervision, so you don’t have to worry so much about them or just let another person take some of the tasks off your plate to avoid burn out. You can even say it’s because of work or children etc., which leaves you with little energy when you get home and you feel bad that you can’t support them more. That way they are doing it for you, whilst understanding that it’s not because you want to spend less time with them.
Don’t fall into the trap of feeling like you are just their carer.
You are so much more than emotional and/or physical support. They still love you for all the unique qualities that you continue to have from before their injury, so make sure they still see that person. Yes, both your lives have changed, but that doesn’t mean you have to become someone else.
Let them still see your winning smile, your witty sense of humour, your artistic flair, and whatever else makes you the special person that you are. Like how we might go through career changes in our lives and perform different jobs, it doesn’t change us at heart, only in title.
Disclaimer
Nothing in this blog should be taken as providing medical advice or recommendations. Please always consult your doctor for medical advice and before taking any medication or supplement. Any opinions expressed in this article are of the author and not CFG Law Limited.
Michelle Munt
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