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A Family’s Story

“The diagnosis was not explained at all. They just told us to get in touch with PSPA and that they’d see us in six months.”

“David and Tracey both had good jobs. Tracey worked in a school kitchen and David was an engineer in a factory. Life was good and filled with laughter ever since their first date 18 years ago.

Tracey said:

“David and I both had good jobs. I worked in a school kitchen and David was an engineer in a factory. Life was good and filled with laughter ever since our first date 18 years ago. Since then we married and had our daughter Grace. David also had a son from his previous marriage and I had a son and daughter.

“One morning David noticed that he couldn’t shave half of his face. It seemed such a strange thing to suddenly happen. I also noticed that conversations with David were starting to become really drawn out. The doctor suspected a possible brain tumour and David was rushed into hospital for a scan.

She said:

“Hearing the news that David didn’t have a brain tumour was a huge relief for all of us. However, we were told his brain was shrinking. After a number of cognitive tests, and two years after the initial symptoms, we received a diagnosis of CBD in 2017.

“The diagnosis was not explained at all. They just told us to get in touch with PSPA and that they’d see us in six months. We left the appointment relieved it was not a brain tumour. CBD seemed like the least scary option. It wasn’t until I started Googling it did I realise what lay ahead of us.

“Initially, we just went back to our normal life. I gave a book about CBD to our daughter Grace who was just 13 at the time. But I don’t think it really dawned on her what would happen until she started to see her Dad declining.

“David’s personality has changed. He was bubbly and outgoing, always cracking jokes but now he’s very quiet and just listens. He no longer makes conversation with people because he struggles to find the words.

“I help get David get washed and dressed in the morning. His eating is okay but I make sure to cut up his food for him. He’s a bit wobbly on his legs but we aim to go out every day to keep them moving.

“I don’t really think about how I’m now having to take on more of a caring role for David. It’s just something you do. I want to be there for him and help him in any way I can. More than anything we all simply feel totally heartbroken at what is happening to David.

“Grace is a big help. She’ll help David onto the stairlift, or to put on a coat or jumper. Most important of all, she makes him laugh. Something that’s lovely to see.

“David can no longer drive and had to leave the job he loved. Slowly, one by one, things are being taken from him. The other day I came across his old work t-shirt. That was incredibly upsetting for David, another reminder of what he has lost. I’ve also finished work.

“David had a fall at home and I decided then and there that I needed to be with him. I didn’t want to wait for him to get really poorly, instead I wanted us to make the most of our time together.

“With both of us being so young and leaving work it was incredibly stressful. We were both worried about finances. After David left work I contacted PSPA for advice. PSPA sent someone round from the Department of Work and Pensions who advised us on what we were entitled to and completed a PIP assessment. When I finished work, I contacted PSPA again and they got someone from the Department to advise me over the phone. This was a huge help. We knew nothing about what we were entitled to, so this made our lives so much easier.

“Health Unlocked, PSPA’s online forum, has also been a huge help. There, you can be sure you will get an honest, truthful answer from someone who has been there. You don’t want to moan to the people around you, but to be able to do it with strangers helps enormously.

“My aim is to help David to continue to do what he has always enjoyed. He likes to place a bet on the football so I take him to the bookies each week so he can fill in his football coupon. It helps to keep his brain ticking.

“Every day we aim to get over what new challenge awaits us. It’s hard though to keep life as normal as possible. You find once diagnosed with something like this, people tend to drift away. At first everyone says they are there if we need anything, but then you notice the invites become more sparse and less people call in. Occasionally people text and say ‘bless him’ when I tell them how’s he doing – but that just annoys me.

“Despite all this we have a lot of fun together and try to find humour in most things. It helps to defuse the stress. We don’t look too far into the future. We have a holiday to Yarmouth booked for this summer. That is as far as we are willing to focus on at the moment.”

Grace said:

“I’d hear CBD mentioned in the background at home when mum was talking to someone. Mum gave me a book to read about CBD, but I didn’t really understand and it went over my head. Now I see how it has affected Dad I understand a lot more. I think I just needed to see it rather than read about it.

“Dad was always making jokes. Gradually we noticed when he was making jokes they’d take much longer and they started to become boring to listen to. That was the main thing I noticed, but now, I’m starting to forget what he was like before he got ill.

She said:

“Early last year it dawned on me that Dad wouldn’t get better. His talking is getting worse and his legs are wobbly and not very stable. It takes him ages to get out and you have to simplify things for him.

“Sometimes I help him to get on the chair lift and I tell him what colour to press for up and down. It’s just the simple things I can help with, Mum does the rest.

“Occasionally I’ll talk to my close friends about what is happening to Dad. It depends on my mood. There are other times I don’t want to talk about it at all. When I go to school I feel like I get a break from the situation at home, but then I find I tend to focus on stressing about school. I don’t feel angry about our situation, but I do feel upset. But it is just the way it is now.”

David said:

“I knew something was up when I started clipping car wing mirrors when driving, and I’d often end up on the curb. It got to the point where I had to stop driving and started to walk to work. I couldn’t trust myself.

“By the time I got to work I was shattered. Then I started to struggle to shave one side of my face. I’ll be honest and say I was scared. I had no idea what was happening, but it didn’t look good.

He said:

“Once we were told I didn’t have a brain tumour I felt so much relief. We tried to get back to normal, but it was clear there was something wrong. Not knowing what it was felt like torture.

“With Tracey’s help I am trying to keep doing the things that I’ve always done, but there’s no hiding from the fact that I’m getting worse. Even when we go to the bookies to place a bet, I can no longer fill the coupon in myself and need Tracey to do it.

“I don’t see that many friends now. Mostly I’ll see them in passing, when we are out in town. I do get deserted and I know we are no longer invited to things. But at the same time, I don’t want to go anywhere where people feel sorry for me.

“The worse thing is I like to make people happy, so now I feel so sad I can’t do that anymore. I feel sad for Tracey and Grace and what this is doing to them. We do still have a laugh though and I’m grateful for that. I just wish it wasn’t me, but then I wouldn’t wish this on anyone else either.

“But, I can still enjoy music and we do have good times. I’m very proud of Grace, as well as our other children. Tracey couldn’t look after me better and I love her very much. She’s brilliant, I don’t know where I would be without her. It’s a comfort to know they are there with me.”