A family member’s personal account of dementia care at Badby Park
Badby Park provides specialist inpatient neurological rehabilitation and complex care for people with neurological illnesses, acquired brain and spinal cord injuries. One of the residents cared for at Badby Park was Andy, a former postman, who was registered as blind and had Posterior cortical atrophy (PCA), a rare form of dementia also known as Benson’s syndrome, which is a rare, progressive degenerative brain disease that affects the cells in the back of the brain. PCA is considered a visual variant or an atypical variant of Alzheimer’s disease.
Andy lived at Badby Park for 5.5 years before his passing in the Summer of 2024. Andy’s wife, Sarah shares her personal experience of having a loved one receive care at Badby Park. In her own words, she explains why “the care was amazing from day one” and the relief she felt knowing that she could focus on being his wife rather than worrying about care.
Diagnosis and care: “At first I cared for him at home, but due to Andy’s complex needs it became very difficult for me.”
For most of Andy’s life he was a postman, but then he was made redundant and he went to work as a Lodge Porter at one of the local colleges. It was one of his work colleagues that first noticed that he was making mistakes, like putting keys in the wrong places and letters in the wrong pigeonholes. He thought it was to do with his eyesight – Andy had very bad eyesight due to a condition called Fuch’s dystrophy which led to Andy having corneal transplants to both eyes.
His colleague covered for him for months and corrected his mistakes. The colleague eventually got in touch with me to discuss it and at the same time I’d noticed Andy doing funny things at home. So, I’d made an appointment to see the GP. He was 58 when he was diagnosed with PCA, which took around six months. It was about 12 years ago and when he passed away he was 70.
At first I cared for him at home, but due to Andy’s complex needs it became very difficult for me. So, the mental health team found a place for Andy in a care home. Initially I felt relief, but it soon became evident the home couldn’t cope with him. It was supposed to be dementia friendly care home, but I don’t think they really understood early onset dementia. He was there for six months but during that time he suffered horrendous injuries so to cut a very long story short, we got him moved.
We were then offered a place in Maidenhead but that all fell through because the paperwork wasn’t done in in time and then the next place was Badby Park. At first, I was concerned about the distance. I thought Daventry, that’s the Midlands, that’s miles and miles away! But I was willing to consider it because I just needed to get him moved. So, I went with my sister-in-law to have a visit.
First impressions: “I felt huge relief that this place was already doing what my gut feeling was telling me needed to be done.”
When we arrived, the first thing I noticed was a gentleman about Andy’s age and he was wearing a helmet. I had asked for a helmet for Andy at the care home he was currently in, and I was told I couldn’t have one. So, I bought one and they never put it on, so he suffered horrendous facial injuries from bumping into things.
Andy often had a bruised face and a swollen eye, and nobody thought that was unusual. Looking back, I should have made much more of a fuss, but I was too afraid to do that because I had to leave Andy in their care every day, so I made sure I, or other family members, visited every single day. So, when I was at Badby Park and saw the gentleman, I just said out loud, ‘Oh my goodness, he’s wearing a helmet!’ And Theresa, the Service Lead, she said, “Yes, that’s normal. If the residents are mobile and they are at risk of injury they can wear a helmet.”
(Whilst at Badby Park, Andy was assessed and measured for a helmet to help reduce injuries.)
Then I went into one of the bedrooms and I said, “Oh gosh, there’s no doors on the bathroom!” She said, “Is that a problem?” and I said, “No, I’ve been pleading with the care home to take the door off the bathroom because he just kept opening it and hitting his head.” I’d taken all the doors off downstairs at home when he was still at home because he was walking into them.
Immediately I felt huge relief that Badby Park was already doing what my gut feeling was telling me needed to be done. So, I accepted the place, and they were just amazing from day one. Literally amazing. They listened to everything I said. Everything I asked they explained or actioned. It took a few months for Andy to settle in, but they were so patient with him.
Whenever I visited everyone would welcome me and say hello. If I ever needed anything the team would be there. I could visit whenever I like. I’ve been in the evening and stayed till quite late at night because he’d not been well and I just I didn’t want to leave. But there was never any question of, ‘What she doing here still?’ I was always made to feel welcome and part of the family.
Daily care: “Whatever the resident needed came first.”
I can remember when he was first there, he would pace up and down the corridor the whole time. Then occasionally he would sit down on a sofa right at the end of the corridor. I could see right down the unit. Andy would usually fall asleep, and I just used to sit and watch what was going on and it was fascinating to watch.
There was a harmonious flow to the care – there’d be somebody with a resident and if they needed to do something, for example to go and get the drink, another person would take over. It would just all be flowing. If there was the odd occasion that the care team members were occupied, Theresa or a nurse would step in. There obviously was a hierarchy within Badby, you have to have a hierarchy for it to be run properly, but when it came to the residents needing care, they were all on a level.
Whatever the resident needed came first. So, if something needed doing and that nurse or Theresa happened to be the one stood by that resident, they would just get on and do it. I’d see the changeovers happening and people going to breaks and coming back off a break. It was almost like being a fly on the wall. They didn’t take any notice that I was there, so it definitely wasn’t put on, it was all genuinely happening.
Changing care needs: “Whatever Andy needed I felt I could just say.”
Andy’s care plan was always evolving as his care needs changed. If I was worried about something or I thought Andy needed something else, I felt I could just say it and it would be discussed and if appropriate, it would be implemented. Or if the staff were changing something, then they would tell me, such as when he needed hoisting and, and all those sorts of things, it was always discussed.
Of course, over time we did encounter a few issues, Andy had complex needs and behaviour and required 1-2-1 care around the clock, so it was inevitable. At first Andy was very mobile and used to run so there were a few safeguarding issues. I just felt very relieved that everything was very open and transparent at Badby Park. The team would say, “This is what we’ve done. This is what we’re going to do. This is what we’re going to put in place to say it doesn’t happen again.’” It was always explained to me, so I felt very secure as well.
End of life care: “They kept me informed and they were very attentive. It was very peaceful.”
The last 10 days or so were managed absolutely perfectly because my big, big fear was that Andy would be in pain and distressed. His swallowing went and once he went on to morphine, I knew that was the end. The last three nights I had a camp bed in Andy’s room, then the very last night I was actually on a bed the same level him so I could be alongside him. I didn’t ask for that, they just did it, turning him and working around me and disturbing us as little as possible. It was managed beautifully, and I could tell he wasn’t in any pain. I was really scared about that. They kept me informed and they were very attentive. It was very peaceful.
Advice for families: If it’s worrying you it’s not stupid, just ask and don’t be afraid to ask.
If there’s another family in a similar situation to us, then I think the best advice is to always ask questions. Whatever you’re worried about, even if you think it sounds stupid, just ask. If it’s worrying you it’s not stupid, just ask and don’t be afraid to ask.
It also helps if you are open to what the care team are trying to achieve. We all have ideas about what our loved one’s need but sometimes I didn’t grasp the full picture of what Andy required especially as his condition progressed.
I can remember going to the very first continuing healthcare review and I was amazed how they’d organised that. We met in the board room and all the staff that needed to be there were present – physio, charge nurse, the social worker, Theresa, me, and then obviously the CHC assessor. They had compiled all this information, and I can remember the assessor saying, ‘I love coming to Badby because they’re so organised. They have everything there that I need – all the paperwork is there, and I don’t have to ask for anything. They’ve done the reports and it’s all up to date.’ I was just so impressed.
I hadn’t realised Andy was quite as complex as he was because it was all just dealt with by Badby Park. I can remember they said, “Now that he’s here, he can go back to being your husband again. You’re not his carer anymore, you’re his wife.” It was lovely because if he needed anything, I just asked, and it would just happen. If I wanted to do something, if I wanted to be involved, I could just say, ‘Do you mind if I stay?’ It was always whatever I wanted to do. They respected the fact that he was my husband, and there was a great deal of respect for me. When I used to watch what was going on, I could see the respect they had for the residents as well as for each other. It is a wonderful place, and I will never stop thanking all of the staff for the care, compassion, respect and dedication shown to both Andy and myself.
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