Keith's Story

Keith shares his experience of becoming a carer as he and Denise continue to adjust to a life they did not expect.

Keith’s Story

Life before Denise had a stroke was good. We lived in our own world, owned our own house and saved enough to go on holiday each year. I spent much of the week away working as a lorry driver. Denise worked as a receptionist in a hair salon, and she enjoyed swimming with friends and going out. It felt like we were ‘just getting there’ after years of struggling and working hard.

The stroke happened on a Saturday, while I was driving my lorry back from Banbury. I called Denise who said she was not feeling well. For her to say that, it was unusual, so I knew something was wrong. After losing signal, I called her back and her speech had gone. I immediately knew it was a stroke, so I called an ambulance, and she was taken to the John Radcliffe Hospital.

I got to the hospital as soon as I could. When I arrived, I was told Denise was critically ill. They were going to put her in an induced coma, and I was told that if she woke up, it would be a bonus. She would also need an 8.5 hour operation. There were lots of ‘ifs’ at that time. I’ve never experienced pain like it. I know we’ve all had different things in life, losing parents and such but Denise is my mate, my wife.

In total Denise was in a coma for four days. The surgeon found the bleed and was able to operate, but there were still so many ifs. I had no idea where to turn, how I could help her or what I needed to do.

I felt completely lost

Then I met Sharon [Oxford Head Injury Services ABI Navigator] while Denise was in intensive care. From the beginning, Sharon was there for me. She listened to me and helped me understand what was happening.

I did not know anything about strokes, rehabilitation or what was going to happen next. I felt like a lost sheep. There were lots of people giving me different advice. I was told that once Denise was discharged, she might have to go into a care home which I didn’t want to happen at all.

Later, there were also difficult decisions about rehabilitation. Initially the recommended service did not have space or the right facilities for Denise. Eventually she went to a rehabilitation centre in Leamington Spa and, although I was not happy at first, it turned out to be fantastic with wonderful people and much-needed structure for Denise.

When you have no one else, it’s a scary old thing, I didn’t know where to turn. Sharon was there for me, at the end of the phone. I would be lost without her.

The challenges of caring

I was so happy when Denise came home [from Leamington Spa] but it has been difficult. Suddenly I was responsible for everything. I had to care for Denise, run the house, understand finances, speak to professionals and find a way to pay the bills.

Before the stroke, Denise managed our money, and I was happy for her to do that but when she went into hospital I didn’t know where anything was. I have also had to become more outgoing. I now have to speak to people and make decisions, which is not something I am used to doing.

The stroke has affected Denise’ communication and behaviour. Sometimes she can become focused on certain things and cannot understand why she cannot have them. Something that should be straightforward, such as shopping, can be very difficult. There are so many unknowns.

The financial pressure has also been extremely difficult. Although Denise receives PIP, it does not cover our household bills, or the support she needs. I cannot work like I used to, because I can’t leave Denise for long periods of time.

People tell me Denise has done well, and she has. But I still miss my wife.

The hardest thing about being a carer is the loneliness. You can be surrounded by people and still feel completely on your own. There are times when I think “this is too much” but I do my best.

Finding support at Oxford Head Injury Services

Sharon now provides one-to-one speech and language therapy support for Denise in our home. I think this has helped and Denise is gradually building trust with her.

Sharon continues to support both of us. She has contacted Adult Social Care and helps me understand what support may be available. She also assists with practical things. She recently applied for a ‘Brain Injury Identity Badge’ for Denise to make shopping easier.

Denise is still new to the Centre. At first, she did not like coming. She did not see herself as being part of the group, but gradually, she is beginning to feel more comfortable. It is a chance for me to know she is safe and get some time to myself.

The support we have both received makes me want to help others in a similar situation one day. You never expect something like this to happen, but it can happen to anyone.

Nobody wins from a stroke. We never planned for this life, and we are still learning how to manage it. Without Sharon, I do not know where we would be.