Paul Campbell cared for his wife, Elizabeth, at home for the six years she was ill.
Isolated by a lack of understanding among healthcare providers, Paul finally found a supportive ear in PSPA Befriending Volunteer David Pugh. Here, Paul shares the difference David made to him.
Christmas is a funny time for my family.
The fun, family celebrations headed up by my wife Elizabeth have given way to quieter, more reflective periods since she died just after Christmas 2025.
We physically lost Elizabeth that day, but the essence of who she was fell away, piece by piece, during the six years she was ill.
Initially thought to be Ataxia, her rapidly declining health later led to a diagnosis of Progressive Supranuclear Palsy in 2022.
Following her diagnosis, healthcare professionals wanted to admit Elizabeth to a hospice for palliative care, but I knew she would want to be at home. And I wanted to care for her.
But I couldn’t prepare for what that truly meant: watching my partner of 64 years decline before my eyes.
Local healthcare providers sent many people to help. But they had no idea what PSP was, so they didn’t really understand what was happening; how could they?
We felt very alone during that time, isolated by our unique experience.
But then I met David.
PSPA paired me with David in December 2023. We immediately connected. He explained the condition, the symptoms and how they are likely to progress. Using his experience, he told me what to expect.
Practically, I was on top of things. But I struggled with the grief of losing my wife, whilst she was still living. David cared for his wife Rosalind, so he’d been in my shoes, and he just got it from the start.
He knew how to talk to me, listen to me, soothe my anxieties. Often you are up all night, exhausted and with your mind racing with what challenges the next change will bring. So, David could also spot when to back off and give me space.
As much as people try, you could never understand this condition until you have lived through it yourself. And that is what David brought. True understanding, before and after Elizabeth’s death. It’s been tremendously helpful. He really was my lifesaver.
Help Families Feel Understood and Less Isolated
You can help us reach and support more families by donating to PSPA’s Christmas Bauble Appeal.
You can donate on our website or call us on 01327 322414.
