My name is Karen. I support my husband Dave, who has terminal cancer. He was diagnosed with multiple myeloma in 2020. He also has neuropathy and COPD.
When this all happened, it was during COVID. He couldn’t drive. I had to drive him everywhere, there were lots of treatments and he became quite unwell, so there was lots of physical support I had to do. I had to take over the house and the finances and I had to give up work completely because he couldn’t be left on his own. After he had his stem cell treatment, he got a bit better and is now in clinical remission.
Dave was in the fire brigade, so he was entitled to support from the firefighters charity. He went down to Penrith and they had physios and hydro pools. The nurses there took over his care. He could hardly walk when he went down there. Because of the neuropathy he said it felt like he was walking on broken glass. He couldn’t hold a cup or open a bag of crisps or carry a plate. On the Monday he arrived in Penrith, he had to be hoisted into the hydro pool. By the Friday, when he left, his mobility was vastly improved, and he continued to have physiotherapy at home including walking on different textures, on the beach and on the grass. We had to spend a fortune on special things to keep his hands and feet warm. He went down to Penrith three times and then we got to the stage where they said they’d taken him as far as they could.
But I was having to do everything. Running baths, checking water temperature, sorting his meals, shopping, housework, cleaning, finance, organising appointments. He was basically sleeping all the time. He was taking so much medication that I had to draw up a timetable. The chemo took everything out of him.
And then we had to move house three months after his stem cell treatment. We needed a ground floor property. The stairs were so steep, and he wouldn’t have been able to get out if he had needed to. There was no way we could have put a stair lift in. We had to put an intercom in because he couldn’t let anyone in the house if I was out. He couldn’t get down, but when the occupational therapist came in, they said the home was a risk to his life. And we had to move within 2 weeks.
There’s been so much to emotionally cope with. Helping him cope with his diagnosis, the fact that it is terminal, the repercussions of his treatment and then he lost his job, his independence. We had to sit down and talk about the future and what will happen when things happen to him and that has been really difficult! It went from Dave being the man of the house to me having to do everything for him. And that was a huge thing. The relationship just changed overnight. He was given his diagnosis and they said “We start radiation on Friday”. We didn’t have time to process it. And then he fell ill. Our roles completely reversed, and he was 100% relying on me. And we had to navigate that and the difference it meant to our relationship. It’s how you navigate that change that determines how strong you are in the end. He really struggled with not being carefree. Because of covid and the risk to him, we went from a loving, comfortable, carefree couple, to a couple who had to sit on different sides of the room so that I didn’t pass anything to him. It was just horrific.
We were getting help from Citizens Advice for our benefits, and they told us about Carers of East Lothian. At first it was just for help with a grant for clothing. We had a grant to buy him clothes with zips on to make it easier for him to get dressed. He’d lost a lot of weight, and he needed lots of new clothes so Carers of East Lothian helped us with that.
Carers of East Lothian also told us about a Time for Me grant. We’d made a bucket list of things we wanted to do, go on the pitch with the match ball, visit the kelpies, the big wheel. And we really wanted to go to Winter Gardens. So, the Time for Me grant meant we could go there. It was the most amazing weekend. We picked the cheapest room we could get in Blackpool because the tickets to the Winter Gardens were so expensive and used most of the grant, but we didn’t care. It was just somewhere to put our head down. We completely forgot about the cancer, the treatment, the bills. And he was on the tele and that was just perfect. It was about making memories.
I hate being called his carer – I’m his wife. I do what any normal loving wife would do. I’m just doing what I promised I would do. We are the same people but different scenarios. Life has changed. And as it turned out, he’s had to do the same for me.
We put a lot in place that made things easier for Dave. After he started to feel a bit better, I took a small cleaning job for a few hours a day. He stayed in bed while I was out, and I’d come back and help him out of bed. Work were good to me and understood my situation and could be quite flexible with me because of the kind of work I did.
I continued to work around my caring role and I started to feel like I wasn’t needed as much. My mental health was affected and it deteriorated over time. I changed jobs but the pressures of working and caring was too much for me and I started to feel suicidal. That’s when I started having support from the CWIC team.
In December last year, I went to work one morning, and I woke up in the hospital and I didn’t know how I had got there or what happened. I was sitting eating a bacon roll and I fell off the chair. I was in the hospital for 3 and a half weeks! I couldn’t feel my legs, or my arms. I remember the first thing I thought when I came round was ‘What’s going to happen to him?’ The Neurologist eventually diagnosed me with functional neurological disorder. While I was in hospital the seizures started.
After I got out of hospital, we really struggled. That’s when Carers of East Lothian became more involved. Aileen Carer Support Worker gave us emotional support, helped us to navigate all of Carers of East Lothian’s services, and we applied for a second Time For Me grant which enabled us to travel to stay with family for a much-needed break. She referred us on to Diane Welfare Rights Carer Support Worker to help more around finances. The biggest thing was financial. We also had support with Financial Inclusion Fund grants to help with food and electricity as we had to wait 6 weeks till our first Universal Credit payment. My mental health was really deteriorating then. I’d ended up in a wheelchair, I’d lost my driving license. Every day there was something different. I spoke to people at CWIC and I felt like I couldn’t breathe. I felt like I was walking into a brick wall. That’s when they involved the distress team. I spoke to them on the phone every day. That support helped a lot. Since then, Diane has helped us to apply for various benefits and is supporting us with an ongoing issue.
There’s so much focus on the cared for person’s needs, that the carer forgets about what is important to them. And so, to have Carers of East Lothian that can step in, it just gives me reassurance that if this were to happen again, Dave would have help. Aileen helped us realise that Dave was looking after me, as well as me looking after him.
When we were in the midst of all of the issues with Dave’s health, I forgot about myself. I think a lot of the mental health issues that I’ve had are because I stopped thinking about myself. But because of the support I’ve had, I’m still here. I didn’t see us getting through it. I’ve lost my mobility, my independence, my job, my driver’s licence, but due to the help and support we have received and continue to receive from Carers of East Lothian, we are still sitting here laughing!
The support that K has received from Carers of East Lothian.
Karen received support from CoEL’s North Berwick Carer Support Worker including but not limited to:
- Support navigating health services
- Advocating for carer with services around impact of caring / carer stress
- Completion of an Adult Carer Support Plan
- Applications to Time for Me grant programme to enable carer to take a break from caring with person who is cared for
Between April and September 2025, Karen received support from Diane, Carers of East Lothian’s Welfare Rights Carer Support Worker. This has included support with her Adult Disability Payment application. Due to Karen’s health condition and fatigue impacting her memory, focus and concentration, this application was completed over eight sessions. It was important that this process was not rushed and was completed at Karen’s pace in order to accurately represent how her health conditions affect her daily life, as well as the level of support she now needs.
Diane also supported Karen with applying for Employment Support Allowance (ESA) and the ongoing complications with this benefit including a complaint letter. As well as small crisis grants through Carer of East Lothian’s Financial Insecurity Fund for food and energy. Diane helped Karen to be aware of passporting benefits such as Council Tax reductions, blue badge, mobility car and road tax. Diane signposted Karen for specialist employment advice as she was unable to continue her employment. In addition, Diane supported Karen with council tax arrears including signposting to Step Change Debt Charity. Diane encouraged Karen to escalate issues with her MSP and provided specialist advice and support for benefit issues, escalating where appropriate.