Nothing about living with a brain injury is easy. But time and again I hear how survivors feel abandoned by their friends and family. For anyone it is difficult when key members of their social network do a vanishing act on them. But when your world has been turned upside down, and it’s void of those relationships, it can be soul destroying. However, that doesn’t mean they are bad people, just that they are struggling too. I have written in two other guest blogs about how not long after my car accident, my Dad was diagnosed with Alzheimer’s (a form of dementia).
Maddy at home – Alzheimer’s where I try to explain how I tried to support his independence in the early stages of his condition.
The brain injury hub – One decision away from a different life – I touched on how my experience of brain injury gave me an advantage when trying to understand what he was going through.
Effectively I have walked on both sides of the cursed coin. And I can tell you, they are both difficult. I have made loads of mistakes, and I’m not proud of them. But I’m hoping I can help those who are questioning others behaviour. I’m not going to attempt to solve the issue, because I can’t. But perhaps I can help people forgive and begin the next stage of their journey.
Facing a brain injury with a loss of relationships
When something bad happens to you, or you’re just feeling down, most of us have someone who we turn to first for support. For me, which it is for many, that was my Mum. But she passed away suddenly just 3 weeks after my accident. I’m still heartbroken about it, but at least I know she didn’t abandon me. So the pain I have felt in the absence of other key people of my social network has been different. I’ve gone through several stages in my grieving for these lost relationships.
- Denial – To begin with I made excuses. It’s not that they were avoiding me, it’s just that they were busy. Don’t worry, when they have a moment they’ll be in touch. This happens because you have to pace your sense of loss, and as you have so much to contend with you park this issue for now.
- Anger – When I finally had to admit some individuals were not going to see me, or pick up the phone, I became angry. This is just a part of the healing process. I know I would gladly have those people back, and would now welcome them with open arms. But you go through anger just because you care and miss them. You feel let down and I was obsessed with the feeling of injustice. Embrace it, you need to express yourself. Just don’t shout at that person. Maybe privately write it down or go in another room to scream it out.
- Bargaining – Next we find a way to blame ourselves. I’m grumpy, snappy and take forever to find my words, so I’m terrible company. I wouldn’t want to have to deal with me. We are trying to find a way to identify the problem, so we might be able to find a solution. But the reality is, sometimes the decision is not ours to make. We might not like their choice to go on without us, but that’s their right.
- Misery – I was so sad that those relationships were missing after my brain injury. This added to my depression and made me question my self worth. In a way our nervous system is just trying to take a well earned break. This is to give us a chance to adapt. Whilst this is painful, it is necessary in the same way the Australian bush experiences regular fires. It clears things and allows space for the next stage of growth.
- Acceptance – It’s not that I do or don’t agree those people should have walked away from me. But in the same way I have had to accept my Mum isn’t coming back, they have made their decisions and I respect that. There might be some learning points, or there might not. Either way, one just has to move on.
How it feels facing a brain injury survivor
I have had to witness my Dads’ decline. Hopefully for many survivors they will have had a period of recovery, but may still have bad turns. Even though I can relate to his struggles, I have at times forgotten how he is different now. I just expect him to be the same, strong, clever, funny man he has always been. So when he says something silly, or keeps asking me the same thing again and again I can become frustrated.
There are times that I just don’t feel I have the emotional capacity to give him my patience. We never know what others are facing in their lives, and I know there are times I don’t call him because I know at that time I don’t have any more to give. I feel terrible about it, but when I’m drained I can do more damage than good. I might snap at him and that isn’t what he needs. So I think it’s better for us both if I retreat until I can have a more positive effect.
I am the youngest of his children, but as his power of attorney, I have now swapped roles with him and become the guardian. However, he is still fiercely independent which can lead to him picking the wrong battles. He wants to feel in control of his life and will refuse help. I know I have also been guilty of cutting off my nose to spite my face. Sometimes when he is like that I think In that case, why do I bother? I can be left temporarily feeling undervalued, and of no real use.
In fact I am grieving for the person he used to be. And believe me that’s a real challenge. In many ways I’m probably not meeting that challenge very well, but I’m trying. So perhaps those relationships we have lost happened because they care so much, they are grieving for us. In time all we can do is forgive, and open our hearts to accept our future.