Page 14 - Ashgate Hospicecare News 2018

Carole’s Story
Carole and her husband, Geoff, from Dronfield, had their lives turned upside down when Geoff was diagnosed with a rare degenerative disease known as MSA (Multiple System Atrophy). Carole shares her story about how the Hospice provided vital support through Geoff’s illness.
In October 2010, my husband, Geoff, was diagnosed with Parkinson’s. He was on medication for it which didn’t seem to be working and so in February 2011, we went back to the hospital where we saw another consultant. This consultant was new to the
team and an expert in these kinds of diseases. He diagnosed Geoff with MSA (Multiple System Atrophy) on his first appointment.
It all started with a bad back, then Geoff’s bladder stopped working. Nobody could figure out what was causing it. It wasn’t until later when he was referred to neurology that they diagnosed him with Parkinson’s, then later MSA. We didn’t realise that Geoff had already been having symptoms of MSA for some time. He had been having trouble breathing when he slept and had been having violent dreams.
At Geoff’s first neurology appointment, I asked the doctor to write down the name of the condition for us as I’d never heard of it before. He didn’t tell us at the time that it was terminal, he just told us not to believe everything we read on Google. We came out with an armful of prescriptions and from then on, Geoff went to see the specialist consultant every three months.
Knowing that Geoff would get gradually worse, we decided to stop working and travel to some of the places we’d wanted to go to. That
first year, in 2011, Geoff was still very mobile. Then, in early 2012, Geoff had a fall in the snow and hurt his back again. He never recovered properly and from then on, he really started
to decline. Geoff was referred to the Hospice and they got in contact with us straight away. Lesley, a Hospice at Home Support Worker, started coming over for half a day each week to help me so that I could get out. She’d say, “Right Carole, off you go! Do any
jobs you need to do, meet friends, whatever you want. I’ll see you later!” She told us about the Day Hospice and Geoff was really keen on the idea, so he started going there every Friday and really enjoyed it. That gave me
a bit of a break too. He had so many
14
laughs there with the staff and the other patients. Having all of that support was wonderful. I can’t fault the Hospice at all for the support they gave us.
In 2013, the year before Geoff died,
he took a turn for the worst and so
he was offered a bed at the Hospice where he stayed for a few weeks. He had fantastic care whilst he was there. Geoff was quite happy to go into the Hospice when Lesley suggested it and she explained it was just to control his symptoms and then he can go back home. It gave me a well-needed break from caring, plus Geoff was able to have lots of physiotherapy sessions to help his back pain.
I went in to visit him every day with our dog, Jacob, who was very popular with lots of the other patients and their families! There was a lady in the room opposite Geoff’s who was very
Geoff with Jacob the dog, who often visited the Hospice
ill and I got to know her daughter who was with her all the time. We’d met many times in the Family Room. She said to me one day, “I’ve got a favour to ask you. I hope you don’t mind, but could you bring your little dog in to see my mum?” Normally, Jacob is very excitable when he meets new people, but I picked him up and put him on this lady’s bed and he just lay there licking her hand. A big smile came across this lady’s face. She couldn’t speak, but the daughter was talking to her saying, “Remember when so and so had a dog, mum?” We were there for about 10 or 15 minutes until the lady started to look tired so I
said I’d leave them. The next day, the daughter came up to me and said,
“I don’t want any tears because my mum is now out of pain. She died last
night and I wanted to tell you that I’m so grateful for what you did.” I said, “I didn’t do anything! I only brought the dog in and laid him on the bed!” But she told me that it was wonderful.
Geoff and I spoke about what
might happen as he got more ill. Ashgate made sure to have those conversations with us about whether he wanted to be resuscitated in
an emergency and what kind of treatment he wanted. We were very open about things like that, as it was important to both of us. It was Geoff’s wish to die at home, but he said that if he couldn’t die at home then he wanted to die in Ashgate. I agreed that it was the best place for him if he couldn’t be at home.
Geoff died much earlier than we’d expected. It started when he got
a urine infection one Friday. His antibiotics didn’t seem to be helping and so on the Sunday, he had to be taken into hospital. It was a really frustrating time for us because he wasn’t able to be transferred to the hospital he was under in Sheffield where his consultant worked. They couldn’t move him until his infection was under control. It wasn’t until the Tuesday that the results from the labs came back and they could find out what kind of antibiotics Geoff needed, all the while he was getting worse and worse.
I was so worried about Geoff that on the Tuesday I rang Ashgate and spoke to Dr Sarah Parnacott. I explained
our situation and Sarah got one of Ashgate’s specialist nurses who was based at the hospital to come and see us. She was lovely and really helped to put me at ease. She said that as soon as Geoff gets on the right antibiotics and starts to improve, we’ll move him to Ashgate.
Geoff was so relieved when he came back to the Hospice. They’d even managed to put him in the same room he was in before, which he really liked because it was an individual room with a little patio. He said it felt like going home.
I didn’t want to leave him but I was with Geoff’s sister who had travelled a long way to see him and so Geoff said
I should go and take her to the station􏰀 he told me he was fine. I came away, but I didn’t feel happy coming away. I knew he wasn’t right.
Our son, Dom, had moved to Newcastle but he was coming home that weekend to see his dad. He’d come straight from work so I met him at the station when I was there and said let’s get something to eat and
go home. We got a takeaway and just as Dom had finished eating we got a phone call. Dom answered the phone and I realised it was Ashgate. I thought Geoff had died and was kicking myself thinking, I knew I shouldn’t have come home. But Dom told me he hadn’t died. He put the nurse on to talk to me and the nurse said, “Mrs Aitken, your husband is very unwell. He
was insistent we didn’t ring you but obviously we wanted to let you know that he’s not doing very well so you can come and see him.”
I drove to the Hospice immediately.
I rang our other son, Alex, who was living in the South and told him to get up here as soon as possible. By 4am, everybody had arrived to be with Geoff􏰁 myself, my sons and their girlfriends. We stayed with him all night and the next day. A specialist nurse came to see us that night and asked if we knew that Geoff was near the end. We said yes, but he was still trying to speak and he was aware
“By 4am everybody had arrived to be with Geoff. We stayed with him all night and the next day”
that we were all there. The staff were wonderful with us. They even offered us recliner chairs so that we could stay with him all night.
Alex and his girlfriend, Sarah, went to step outside for a bit of fresh air, so I said I’d like to take a walk to the