Somerset's Social Care Training Team taught Sarah clinical skills to enable her to care for her partner Gary at home.
This is Sarah's story:
My partner Gary was diagnosed with MND (motor neurone disease) when he was just 55 years.
One day we had years of good times ahead of us, then suddenly, our lives turned upside down. Gary had never been ill before. Everything was so new for us, lots of things were happening & we were shocked. I gave up work to look after Gary, dropping £17K in income to do so, because being together, at home was important to us.
Gary wanted to stay at home for as long as possible & I needed to learn skills quickly to care for him. He did not want to go into a hospice nor a hospital. He wanted to be in familiar surroundings. I needed to learn how to give his liquid food through his stomach tube, how to give him his medication through his nebuliser & how to use a suction machine to help remove excess secretions from the front of his mouth.
Gary lost his ability to speak but could communicate through a tablet & he wrote his bucket list. We wanted to grab every opportunity to do things & he wanted to go to watch Leeds United play at Ellen Road. I drove him to Leeds, stopping 3 times to give him care on route, but we did it.
Being able to care for him meant we could have these precious moments before he died. We loved visiting West Bay for fish & chips & although he couldn’t eat, Gary still wanted to visit West Bay.
He loved being at home & had just built a new patio before his diagnosis, he wanted to be at home & use the patio.
The final 4 weeks of his life were tough, Gary was sleeping downstairs in a hospital bed & unfortunately got up in the night & fell over. This led me to sleep downstairs & we slept together on the sofa. He did not want to get back into the hospital bed after his fall. We did this for a couple of weeks at which point he was nearing the end of his life & needed to be admitted to hospital.
He died peacefully after 14 days in hospital. I am so glad I was able to support his wishes to stay at home as long as possible.
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