patience Archives - Jumbledbrain

Guest post: Rich Parry-Jones, brain injury survivors husband & carer.

Michelle #jumbledbrain — Mon, 26 Feb 2018 10:05:15 +0000

I have talked before in Support carers about how important family of brain injury survivors are. Their attitude and approach can make a huge difference. So for the first time I have invited a husband & carer to give his valuable input. I introduce to you Rich Parry-Jones:

Always look for the positives, however small they may be.

It’s 1 year and 1 day since my wife Pauline collapsed, suffering a subarachnoid haemorrhage. This year has been by far the toughest of my life but throughout there has been enough positives, for me to know that she/we will get through this.

As mad as it may seem, even when we were giving Pauline CPR I thought, “thank god this has happened here” …. we were at friends house who is a nurse. Things could have been so much different, had we not have been .

Having had Pauline rushed to the local hospital, then on to a specialist Neuro ward after discovering a bleed to the brain, we eventually got to speak to a consultant.

He explained all of the odds and Pauline against these had come through so far. I knew she was strong and I knew she was a fighter, so I knew she’d come through this.

My thoughts then turned to our family, making sure they were all alright, trying to reassure them that everything would be OK. I think some people worried that I was too calm but I picked my moments, whilst alone to shed a tear or hold my head in my hands.

After 7 agonising hours that Pauline was in surgery, I bumped into her anaesthetist and he said “she’s OK”, the best two words I’ve ever heard. I knew from then on that if she could come through this, together we could get through anything. My thoughts then turned back to our 11 year old daughter, family, Pauline’s friends. All been so concerned. Then there was our business. There wasn’t time to feel sorry for myself, question …why us ? None of this would help, so I just thought what do I need to do next ?

Pauline was getting stronger by the day and apart from a very deep chest infection was recovering better than any of us could have hoped. I was travelling between our home in Shropshire and The Walton Centre in Liverpool. Not once did I think of it as being chore, as it’s what you do for someone you love.

After 2 weeks we finally got her home. This was way ahead of the time you would expect for someone suffering from her brain injury. The following weeks were probably the toughest. Pauline has a huge amount of friends and although the majority meant well, it was very hard keeping them away. I’d started back at work, and keeping an eye on our business (a hairdressing salon). Plus, as well as the day to day family stuff and we always had visitors. There was no down time, no time for us to be alone.

After the initial two week onslaught of constant visitors, it was as if someone had flipped a switch. Only family and a few close friends kept in touch with Pauline and she was left very lonely. People you’d expect to be there for her weren’t and people you wouldn’t expect were. It was definitely an eye opener.

I knew as she got stronger and more confident this would ease, such as once she was able to get out in the car etc. However one of the major issues with a brain trauma is anxiety and Pauline was suffering terribly. I’d try to find time to get her out of the house but it was hard with all of the other commitments. Things were strained but I knew what we’d already been through and this couldn’t be as bad as that .

I knew the stronger she got, the easier things would become. They have over time become easier. Pauline has got stronger and although there is still a long way to go regarding her recovery we’re along way from the times where she would be crying uncontrollably and I wouldn’t be able to say or do anything right . I knew she didn’t want to feel this way and she’d do anything to feel normal again. I always had it in my head however hard things were, that this is the same person I married, who I love so much and things will be better . Maybe not the same, maybe better. But when we’ve got each other, we can get through anything and that’s all that matters .

I think you’ll agree that Rich is a wonderful husband & carer to Pauline. Together they are a team, and draw strength from each other. If you’re ever in Ellesmere, Shropshire please book an appointment at their salon JS Hair. They have a passionate, and dedicated team. Pauline herself previously worked along side Trevor Sorbie MBE, 4 times winner of British Hairdresser of the year. Check them out on their Facebook page.

What is the most important thing about the life partner/wife or husband & carer in your life? Is there something you would like them to know?

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Understanding how to communicate with brain injury survivors

Michelle #jumbledbrain — Wed, 14 Dec 2016 19:32:20 +0000

It’s terrifying for friends and family when they realise that their loved one has a brain injury. Initially their behaviour and comprehension can be all over the place, so it’s difficult to understand what is happening. But with time, patience and the right therapy, the effects can improve. For some there will be massive improvements, and unfortunately not so much for others. I am one who has improved so much that strangers find it hard to fathom what I’ve been through. But that has it’s own challenges, as it depends on how people communicate as to how well I will respond. For many who are living with an invisible disability this is a common issue. So I thought it would be useful to explain why some things are challenging, and ways others can communicate better with survivors.

How to communicate with someone with memory issues.

One of the most common symptoms of brain injury is a poor short term and working memory. So many survivors, like myself use reminders such as their phones or diaries to try to combat this. But what is more difficult is the details. There might not be an appointment that needs to be booked, but there can be lots of other details which someone is imparting to the survivor. The individual may understand at the time, but key details could fade afterwards. The best way to tackle this is to make sure they have something to refer back to. So I would urge people to also communicate in writing, to help jog their memory. A text, email or post it note can all help ensure the key message is cemented.

Consider the language you use.

Slower processing speed, which I am affected by, means I might not always be able to keep up. This is particularly hard if the words you use are complicated, or you use jargon and acronyms I’m not used to. I find this happens a lot in the medical industry, where things with long titles get shortened to initials. But often patients aren’t familiar with these so, those like me can find this goes over their heads. I’m not one to interrupt, so will wait until the speaker has finished to ask what something meant. But with memory issues I often find that by the time I can ask, I know I needed to ask something but I can’t remember what.

Remember it can be difficult for a brain injury survivor to control emotions, so how your message comes across is more important than ever.

Everyone has at sometime in their lives received a text that made them think the sender was being off with them, but it was just because it came across wrong. Well there is an increased risk of that happening when you communicate with a survivor, particularly in writing. Not that long ago I received an email from a nurse regarding my dad. Whilst I understood what she was saying, and why, the tone came across as attacking to me. She was genuinely sorry that I read it that way and we moved on. But what she didn’t see was how much I cried when I read it. I took it to heart and ended up having a terrible migraine as a result. With just a little more consideration, the stress I endured could have been avoided.

In summary I would ask that people don’t take it for granted that their message has been received and understood. In our modern world we do everything at speed, and that can mean a personalised approach is harder to achieve. But remember every brain injury survivor has been on an incredible journey and deserves that little extra.

Have you had issues with how others communicate with you? How do you feel people could do it better?

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