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.”
