In March 2016, 91-year-old Fred Turner’s wife Kathy, 88, was diagnosed with advanced idiopathic pulmonary fibrosis, a progressive condition of the lungs, which causes severe breathlessness. Here’s Fred explains how the diagnosis left him feeling.
“I felt extremely alone,” recalls Fred, a grandfather of six who has been Kathy’s carer for the last three years. “Kathy and I have been married for 59 years and I thought I was going to lose her.
I wasn’t sure who fed who, but I later found out that Dr Jackson, our respiratory consultant at Hemel Hempstead Hospital fed the information to The Hospice of St Francis and someone from the Hospice rang and said could they come and see me.
Of course, I said, and down came Caroline, a member of the community clinical nurse specialist team. She was so nice, so helpful and she became a trigger for something which I couldn’t understand. The number of pairs of hands that came towards me was phenomenal.
Kathy has age-related macular degeneration so someone from CareLine came to talk to me about sensory aids and at the same time asked if we could hear the fire alarm. Someone else came along and linked it to a vibrating panic alarm sensor in our bed.
Little things like that where one thing triggers another and right in the centre of this has been Caroline initiating it all. I’m embarrassed by the number of pairs of hands that have reached out to help me. I feel really held.
It’s not the professional way of giving a service for which people are trained. It’s the manner of giving. You stand here for two minutes and someone says ‘Can I help you?’ and they mean it. There’s so much love here - I’m just amazed. I always thought our hospitals were wonderful but this is quite different.
Twice a month for the last eight months, Kathy had been coming to the Pulmonary Fibrosis support group for inspiration and help, which Caroline and Manisha, one of the Hospice’s physiotherapists run. Even though I go along too, it’s been good to get support from people in similar situations and it gives me a small break.
“Kathy has also attended the Knit and Natter group as well as pilates to help her movement and breathing and she’s had very relaxing reflexology on her feet.
We’ve also had three visits from Carol, a carer support volunteer who spends a couple of hours with Kathy just chatting so I can go out and run errands (once at home and several times since she’s been at the Hospice). Manisha even invited me to join one of her exercise classes to help me with my strength and balance and it was marvelous to be able to exercise knowing someone was there behind me, making sure I didn’t fall.
Kathy was admitted to the Inpatient Unit on Friday 13th January and she’d been here five days when I suddenly worried that if she stays here and doesn’t get out we’d lose the Continuing Healthcare funding we’d been promised to care for her at home. Caroline assured me that we won’t lose it – the NHS won’t retract it.
“I spoke to my children on the phone and said Kathy may come into the Hospice and Robert, the middle one said ‘what does Mum think of that?’ I hadn’t thought of that so I told Kathy there was a possibility she might get a bed here and she said ‘marvelous – I can’t think of anywhere I’d rather be.’
“I’m from Eastbourne and The Grand Hotel there is rather special but the Hospice is extra special. What they’ve done for Kathy has been marvelous. She really thought the fibrosis had got her and she felt very sad but there is so much kindness and care here that they’ve given her hope. They’ve given her everything she expected and much, much more."