They say the human voice is the most powerful instrument of all. When motor neurone disease (MND) robbed Hazel, 67, of hers, husband Richard was devastated that he’d never hear his wife again. Keech Hospice Care helped them make a lasting memory and find order in their chaos.
“You can’t imagine what it’s like not being able to speak,” said Richard. “For Hazel it means always having to communicate by writing her thoughts down, banging on the wall downstairs if I’m upstairs and she wants me, always having to choose the exact words to get across what you want to say, never saying enough because it just takes too long.
All that silly chatter we all take for granted is gone. For me, it means never again hearing the voice of the woman I love.
The day Hazel was diagnosed was one of the hardest we’ve ever had. She said, at first, the news didn’t seem real. She felt like a normal person except her speech was slurred, she couldn’t move her tongue as easily and her smile was slightly lopsided.
For the first few months after the diagnosis in February 2017, it was chaos - we had appointments here, there and everywhere. Hazel’s speech began to rapidly deteriorate, and, by May, she’d lost her voice completely. Hazel also had difficulty eating and drinking so she had a feeding tube fitted.
After Hazel stopped being able to talk and eat, we didn’t know what would happen next. We were frightened. It was at this time of uncertainty Keech Hospice Care came into our lives.
Hazel was referred to the Keech Palliative Care Centre (KPCC) for one day a week for support. Now she’s also part of the charity’s Independence and Well-being Service and benefits from its weekly Walking and Move, Music and Mind groups. Thanks to Keech Hospice Care, I’ve also got the support I need, too, and get so much out of attending the charity’s weekly carers’ group. I like having somewhere to go where I can talk to people who are in a similar situation to me. It’s fantastic to have people who will listen. I’ll pick up on something someone says and think, ‘That’s exactly how I feel.’
Hearing Hazel’s voice again
Doctors outside of Keech often just talk to me and I say: ‘Don’t ask me, ask Hazel - she’s sitting right there.’ Liz, the neurological lead at Keech Hospice Care, doesn’t do that. She helps with the slightest worry, suggesting we try new things. It means so much to have someone who totally understands MND. Keech Hospice Care isn’t just for adults and children who have cancer you know!
We didn’t realise how quickly Hazel would lose her voice, so we only had one recording of her - a clip of her being interviewed by Stephen Rhodes on BBC Three Counties Radio in the 1980s. She was talking about being a traffic warden. Sadly, the tape had oxidised from being sat in the loft for years. Then Liz at Keech did something wonderful: she had the tape restored. When I heard it, I was so emotional - I was hearing Hazel’s voice again. I never thought that telephone call, that piece of radio, would become so precious and mean the world to me.
Going to Keech Hospice Care is doing Hazel the world of good. She looks forward to it and has a spring in her step when she comes home. I know, without the charity’s support, we’d be lost.
Hazel wrote: “I love going to Keech Hospice Care. They all understand I have to write everything down, it takes me much longer now to say what I want to, but I can have proper conversations and a bit of a laugh. The nurses don’t treat me like a patient, they treat me like Hazel - I can be myself. At the Keech Palliative Care Centre, I have reiki, which I love because it’s so relaxing.
And I’ve spoken to Nathan, the music therapist, about having
music therapy as well.
Keech Hospice Care is amazing!”
Hazel is cared for by the hospice’s Keech Palliative Care Centre
(KPCC), which offers specialist out-patient support for adults with life-limiting and terminal illnesses, and their families, in Luton and south Bedfordshire.
What does the Keech Palliative Care Centre do?
Did you know, adult patients attended the KPCC 1,901 times last year? We also held 1,042 complementary therapy sessions and 379 sessions of music and art therapy. Not only that, but 200 patients got the support they needed from our amazing social workers who help with practical matters as well as running the drop-in carers’ group which Richard attends.
As well as this, at the Keech Palliative Care Centre:
- we help patients manage their pain and symptoms
- we offer transfusions and infusions in a homely environment, surrounded by nurses the patients get to know well
- we help patients’ mobility through gentle exercise classes, occupational therapy and physiotherapy
- our excellent care extends to a patient’s family and friends, offering emotional, spiritual and practical support
- patients and their families benefit from support therapies like reflexology, massage, reiki and aromatherapy.
When it seems as if nothing will be the same again, Keech Hospice Care is there, free of charge. But we receive only 70% of our funding for the Keech Palliative Care Centre from the NHS. We rely on the generosity of our supporters to continue making the difference when it matters the most. Will you help us help more people like Hazel and Richard? Call us to find out more on 01582 707940 or email email@example.com.