Vanessa’s story

June 7, 2016
Stan, Vanessa's husband

Vanessa from Worcestershire cared for her husband Stan who had a combination of Alzheimer’s and vascular dementia. Sadly, Stan passed away in 2013 aged 89.

This is Vanessa’s story:

Stan was a wonderful man who always had time for everyone. He was full of life and energy, with a big sense of humour and twinkling eyes. Stan was a chartered electrical and mechanical engineer, a union representative, worked for many local charities, and was ordained as an Anglican priest at the age of 50.

One Friday morning, our order of some new patio furniture arrived and we were both excited about assembling it. But Stan could not assemble a chair – not because he was weak, but because his mind could not work it out. He became very distressed so he went to make some lunch and I assembled the chairs on my own. Then we tackled the table together. It took ages.

This for me was a wake up call. I looked back over the last couple of years and began to realise that maybe it was something more than being a little forgetful. For Stan it brought great frustration and one morning he sat bolt up in bed at four o’clock in the morning, with his head in his hands, and said, “I’m losing my mind”.

Our excellent GP ran some tests and a brain scan showed that there was some shrinkage of the brain. Stan had a combination of Alzheimer’s and vascular dementia. I wanted to stand by my marriage vows and the promise that I had made to care for him, so I left the job that I loved. This was a new experience for me and an unknown journey.

We were so lucky that our GP made a referral to the Admiral Nurses, specialist dementia nurses, in Worcestershire. We met Helen and she was fantastic.   Helen offered me a place on a series of five two-hour awareness sessions on Dementia and this was so helpful. There was also the huge value in listening to other carers on these sessions that were all at different stages on the dementia journey, and I was able to pick up plenty of tips.

Helen was a regular monthly slot in my diary – sometimes at the local hospital, sometimes at home where she would see Stan too. He used to ask why she came, and I said; “Helen comes to help me to help you” and he was happy with that; no long medical names, just a sense of warmth which is what people with dementia need.

Helen had practical answers for lots of tricky things, such as applying for funding and a disabled badge. Getting Stan to stop driving and taking away his licence was a big challenge. Helen advised that the GP would be the best person to handle this talk as Stan respected the GP and trusted his judgement, which made it easier for me.

Gradually Stan could do less and less and his personality started to drift away. I felt my soul mate was wasting away. But Helen encouraged us to keep doing Stan’s favourite things together such as having friends to visit, going out for lunch and afternoon tea, and we continued to take church services.

Helen was very careful and sensitive and always assessed what I could cope with. She helped me to recognise each new stage as we went along so I would be prepared. I couldn’t bear to be told any more than one stage at a time as this helped me accept each new loss of capacity.

Stan then developed cancer. Making medical decisions for people with dementia is harder than sharing the decisions, as I wanted to remain true to what he might have done if he could make his own decisions. It was so good to have Helen to turn to. On one occasion when Stan was in hospital, I was aware that Stan was frowning and fidgeting and I thought he must be in pain. The nurses were not concerned because he did not ask for pain relief. I called Helen and she advised me to print off “The Abbey pain scale”, which is a technique to judge pain for people with dementia.  I was horrified that he had been in pain but not able to articulate it. I took the document to the hospital but could not get the nurses to take me seriously. So I called Helen and she came and convinced the nurses. Now there are dementia leads on each hospital ward – Helen and I believe that our intervention brought forward the dementia leads sooner.

In December 2012 Helen asked me: “Would it surprise you if Stan would not be with you in a year’s time?” She judged it so well. I needed to know that, and be ready to make the biggest adjustment.  I replied to her, “No, it wouldn’t, and I accept that.”

Helen gave guidance on end of life care, how I would need to be ready to let go of feeding him, and to work out what I would do for him instead. I chose more prayer with him and sang hymns to him. He would join in sometimes.

In early August 2013, we knew that Stan needed the hospice’s help. He was still able to greet family and close friends with a smile and take an interest in them, even if he didn’t recognise them. And he always smiled broadly when he heard children laughing in the corridor.

Stan slipped away in the week that was his 89th birthday, and our wedding anniversary. He still had his red hair, his sparkling eyes and his sense of humour, right up to the day he died.

The role of full time carer was the hardest role I have ever had in my life but I never regretted my decision to care for Stan. I could not have done this without Helen as my Admiral Nurse. She was there to give expert advice and support, and helped us through this journey in the way Stan had wanted, and gave me the strength to do it.

Everyone who cares for someone with dementia should have the help of an Admiral Nurse. Mine was Helen.

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