In 2020, Pam Powers’ partner of almost 30 years, Keith, was diagnosed with posterior cortical atrophy, also known as Benson’s Syndrome. Keith’s diagnosis came as a shock to Pam, who had not recognised Keith’s early symptoms as a sign of dementia.
“It all started with Keith’s driving. I first realised something had changed when Keith began driving slowly on the motorway and changing lanes unexpectedly.
“I suggested Keith went to see our local GP, who was supportive from the start. There were certain short-term things Keith had been forgetting, but it wasn’t our main concern at that point, so I was initially surprised when he referred Keith to the memory clinic.
“As soon as the word dementia was mentioned, it felt like everything changed overnight. Our life was turned upside down.”
After two years of assessments, Keith received his official diagnosis. Pam described the sense of relief that came after they received the news.
“It was like all of a sudden, Keith’s symptoms made sense. Benson’s Syndrome affects your vision and spacial awareness, which explains many of the changes I had noticed in Keith.
“We coped alright at home at the beginning, but in the Covid-19 lockdown, Keith experienced a heart attack which changed everything.
“Suddenly, we were faced with all these difficult decisions. Keith had a pacemaker fitted but still required open-heart surgery – which we were told was incredibly risky in Keith’s condition and could affect his memory further.
“Keith came home, but it was incredibly difficult for both of us. Physically, he was very unwell and had begun having hallucinations as his dementia got worse.
“I felt like I was on guard all day, every day. I was up when he was up, and even when he was asleep, I couldn’t relax.”
A specialist heart nurse was the first professional involved in Keith’s care that suggested a referral to Barnsley Hospice. Subsequently, Keith stayed on the hospice Inpatient Unit for two weeks and received symptom management for his heart condition.
“When the nurse mentioned the hospice, I was relieved. I had been coming backwards and forwards to the hospital daily with Keith, even when he was discharged.
“Supporting someone with dementia is one thing, but coping with another serious illness on top of that was very difficult.
“As soon as he came into the hospice, I felt calm as I knew he was safe. We met with a doctor who took the time to really explain Keith’s condition and what the future might look like for us. He also talked us through Keith’s care priorities and helped us make a record of those.
“This was the first time where it had felt like we had been able to take control of the situation. Until then, it felt like Keith’s diagnosis of dementia had taken all of the decisions out of our hands.
“I felt really heard and understood. As a partner, Keith often looked at me in bewilderment when someone asked him a question he didn’t understand. So, being involved in the conversation was a huge benefit to both of us.
“Throughout Keith’s stay at the hospice, the staff went above and beyond to support him in the best way possible.
“They made sure Keith had a one-to-one nurse to keep him safe and gave him a cannula that was covered so he couldn’t pull it out.
“I struggled to get Keith to eat at home, but he ate well throughout his time at the hospice. A member of staff took time to sit with him over meals, and the catering team were amazing too.
“They chatted with him and asked if he enjoyed each meal to get an understanding of what he liked. When you gave Keith a menu, it didn’t mean anything to him, so taking the time to talk with him in a way he understood was brilliant.
“These might seem like small things, but they made a world of difference for Keith and me.
“Keith received specialised and personalised care at the hospice, which was all I could ask for as a partner.
“On a personal level, Keith and I could also spend time together just watching TV in the lounge. The hospice gave us moments we couldn’t have elsewhere and reassured me that I could enjoy these times as we were surrounded by people who understood Keith.
“They listened to Keith and me, were patient and spent the time getting to understand the best way to support Keith.
“For me, the biggest thing was everyone at the hospice had time. No one ever made us feel like they were too busy to explain something or spend a bit longer with Keith, which is invaluable for people living with dementia.
“Looking after someone with dementia is 24/7, but knowing he was being cared for allowed me to rest and switch off when I got home. I felt so confident with the people looking after Keith that I knew I didn’t need to worry about him.
“When the care isn’t right, it puts even more pressure on carers in an extremely difficult situation.”
Before Keith was discharged from the hospice, the palliative care social worker helped to arrange support for Keith at home.
“Even though we are living with dementia, I still feel lucky in many ways. We have had a nice life together, and I’m so glad the care Keith received at the hospice has helped us create more special moments.”