At the end it was like we had a member of the family with us...
John and I met in 2002 and married in March 2005. A year later, John was diagnosed with motor neurone disease (MND); with no known cause or cure and his life expectancy was less than three years.
He did not reach our third wedding anniversary. He was 61.
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He retired from Lloyds Bank as head of pensions and we planned to retire to Spain. We spent two years there but moved back three months before John was diagnosed with MND. It proved to be the right decision as we would not have coped in Spain with his illness.
John didn't "do" illness. If he had raging toothache he might take a Paracetamol. Hospitals were anathema except in the most dire of circumstances.
It went without saying that being at home throughout was the only option. John didn't "do" talking about emotions either but discussing practicalities was safe and easy for us.
John had prepared an advance directive, or living will, so everyone knew what treatment he was and was not prepared to accept.
MND is a horrendous disease which affects on average 5,000 people in the UK at any given time, including renowned scientist Stephen Hawking. There are a variety of types but all are progressive and invariably fatal with increasing paralysis.
John quickly became unable to swallow, speak, wash or dress himself or walk. For the last nine months of his life he was fed by a stomach tube. Thanks to the Motor Neurone Disease Association, we had a stair lift, a special recliner chair and an electronic speaking device. These made a huge difference to John's quality of life and his ability to stay at home.
We coped on our own until one evening John suddenly started to be sick, a terrifying experience for someone who has lost the ability to control his mouth.
The out-of-hours doctor gave him an injection and he slept. The next day he was still poorly so the community nurses and GP had a syringe driver set up to provide continuous anti-nausea medication.
The following morning it was clear pneumonia had set in and the end was close. John's eldest daughter came to stay with us so that someone was with him all the time.
It meant we were providing 24-hour care. The community nurse contacted Cotswold Care Hospice for us and they provide a nurse for the night. That way, the community nurse said "you can both have some rest".
The visit to us was meant to be the CCH nurse's final working night for the week. But when she realised how poorly John was, she stayed with us the next two nights.
She would call me during the night if she needed another pair of hands or if John was a bit restless and needed to know I was still with him.
I had not long retired from nursing and I appreciated having the hospice nurse in our home. I could rest, knowing that John was receiving the best care we could provide. T his became a good partnership when the end came during the third night it was like having another family member with us.
The nurse was very competent and I didn't have to worry about the technicalities. She looked after everything. At the same time, she was unobtrusive. I could just sit with John or talk with her as I wished.
I was able to concentrate solely on being there for John. It was a privilege for me to have a friend there to help me with the last offices.
For both of us, John being at home made the best of an upsetting and stressful time.
John was in familiar, comfortable surroundings. Friends and family were able to be with him whenever they wished. They could see how peaceful and well-looked after he was.
We were able to make drinks, snacks or whatever was wanted and when it was wanted.
It was all remarkably relaxed, homely and natural. I felt supported and safe.
Many people say they fear the process of dying more than death itself.
I have been privileged and blessed that the death of my much-loved husband was the most peaceful of the many I have witnessed.
This was made possible by the care and professionalism of the hospice at home nurse from Cotswold Care. Thanks to them I was able to unburden the nursing responsibilities and concentrate on John. She lifted a great burden from me.
I can't describe how important it was to be able to share that responsibility of care with someone.
For more information about Cotswold Care Hospice's hospice at home service, contact Sian Cole on 01453 886868 or email sian.cole@cotswoldcare.org.uk.
Hilary is running the London Marathon to raise money for the Motor Neurone Disease Association. To sponsor her log on to justgiving.com/hilarycorke.











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