Making the Parkinson's journey - together

Kate’s husband Ralph lived with Parkinson’s until his death last year. As Ralph's condition progressed, he developed dementia and eventually moved into a care home. Here, Kate shares her story of caring for Ralph and being a constant by his side. 

“I first met Ralph through mutual friends. He was charming, with a dry wit and old fashioned manners,” Kate remembers.

“Our paths crossed again a year later and we soon became close, enjoying weekends together, cycling and walking in the Kent countryside. 2 years after meeting, we married with all 4 of our children acting as witnesses. He was 53 and I was 48.” 

“I’d always known Ralph with a tremor and we used to joke that although he was a foodie, he couldn’t smell what was cooking. Perfume was wasted on him,” Kate laughs.

Ralph had visited his GP about his symptoms, but they were put down to grief after losing his first wife. Kate adds: "But a colleague’s chance remark about his gait started alarm bells ringing and we pressed harder for a diagnosis. A DaTSCAN in January 2008 confirmed that Ralph had Parkinson’s."

The focus was definitely on what we could do, not what we couldn’t.

Having a ball

“At first, it was a relief as we thought it was a brain tumour,” admits Kate. “To my mind, the diagnosis meant I wouldn’t lose him quickly.”

The couple took early retirement and relocated from Kent to South Wales. They renovated their bungalow and travelled extensively. They had a wide circle of friends and were active members of their local community. 

“It was hard telling people, but afterwards we got on with our lives. The focus was definitely on what we could do, not what we couldn’t. And for 10 years, we had an absolute ball.” 

Over time though, things started changing. “Ralph was always fitter and more physically able than me. Our walking proved this and in the early years he would stride ahead of me and wait for me to catch up. Then I noticed that we were walking together - but it wasn’t that I was improving, Ralph was slowing down.”

Ralph would be happy to talk about how the condition was affecting him physically, but anything cognitive was taboo.

A fog descending

Over time, Ralph began having episodes of forgetfulness or confusion. “It was as if a fog descended,” explains Kate. “It often lifted as quickly as it arrived, but it was there. When Ralph was diagnosed the consultant mentioned ‘10 good years’ and it felt like those words were coming back to haunt me.” 

Ralph became short-tempered and defensive, and his behaviour was unpredictable. While Kate increasingly tried to rein him in, Ralph refused help in the garden and insisted on carrying on with DIY projects which were now beyond him. 

“It was very difficult to get him to talk to anyone about these new symptoms,” says Kate. “Ralph would be happy to talk about how the condition was affecting him physically, but anything cognitive was taboo. It took a lot of cajoling to get him to agree to an assessment.”

Around the same time, Ralph finally applied for Attendance Allowance. “We’d been eligible for some time, but because Ralph was the one who had to apply for it, he was always reluctant. We also applied for a Blue Badge. These steps helped me enormously as I saw it as an acknowledgement that our lives were no longer ‘normal.’”

Asking for help

“I found it very difficult to tell people what was happening at home. Ralph was a very proud man, so he never wanted to dwell on the negatives. And because he wouldn’t ask for help, it felt disloyal to share things.”

“We were lucky that because of our ages, we still had a large network of friends who were a great support throughout Ralph’s last years. Some of these friends knew snippets of what was happening at home, especially if they witnessed an incident. But no one really knew the full picture,” admits Kate. 

“On one occasion, I had to help Ralph get dressed for a formal dinner. The effort had drained us both. We turned up with smiles on our faces, but no one knew the heartache of what we’d been through to get there.” 

For a couple who had always been joined at the hip, I was so sad that we needed those breaks from each other.

Spiralling out of control

“I stopped planning year by year, and began looking at a couple of months ahead. The rate of deterioration began increasing faster than I could adapt to - it was spiralling out of control really.”

As Kate’s caring role increased, she became more exhausted. If Ralph woke up in the night, he would often wake Kate and while he would settle again quickly, Kate would find herself unable to sleep. “The strain of constantly being alert to his needs was like looking after a toddler,” explains Kate. “I was always surreptitiously watching Ralph’s every move, trying to protect him from problems without him noticing.”

Respite became important, but as Kate concedes: “For a couple who had always been joined at the hip, I was so sad that we needed those breaks from each other.”  

Amazingly, Ralph was still able to play badminton, so friends would take him to his weekly game, while Kate would spend an hour swimming at the local pool. She would also enjoy spending time at home on her own. “I used to enjoy knowing where he was and that he was OK. Being on my own in those moments felt like a bit of a treat.”

We left the house full of optimism, neither of us realising that Ralph would never come back there again.

Facing reality

Kate and Ralph’s last trip together was to Croatia. “We left the house full of optimism, neither of us realising that Ralph would never come back there again.” 

In Croatia, Ralph was hospitalised as his dementia symptoms worsened. When the couple landed back in England, Ralph was taken directly off the aeroplane and admitted to hospital. 

Ralph was delirious and would quickly become agitated and aggressive. Occasionally he would have the strength to get up unaided, but this would often lead to him falling. He was doubly incontinent and struggled to communicate. 

Ralph’s doctors began preparing Kate that he was unlikely to be able to return home. “When Ralph was first diagnosed, I read a lot about Parkinson’s, but I had rose-tinted glasses on. I thought I was young and fit, so whatever happened I would be able to look after Ralph. His doctors were very kind, but this news was difficult to hear.”

If I couldn’t even put a top on him or leave him for a few minutes, how was I ever going to manage to look after him at home on my own?

Transitions

Eventually Ralph was transferred to an assessment ward, where his needs could be better monitored. “I still hoped Ralph would make it home, but on one particular visit, we were sat in the garden and he felt cold, so I went to get his fleece from his room. When I got back Ralph was very confused - he had no idea where or why I had gone. I then really struggled to put the fleece on him and as he became more distressed we retreated inside.”

“This was a bit of a lightbulb moment for me. If I couldn’t even put a top on him or leave him for a few minutes, how was I ever going to manage to look after him at home on my own?” Ralph moved out of the assessment ward to a care home 6 months later. 

“It was a very emotional day,” recalls Kate. “But I knew how much harder it would have been if I’d got him home and failed. That would have been heartbreaking.”

Ralph died peacefully with Kate at his side, after spending just under a year in the care home. 

I feel in a good place mainly because so many things we did along the way - sometimes kindly guided by family, friends and Ralph’s healthcare team - felt right.”

Reflections

“Normally in life when 1 door closes, another opens, but as Ralph’s condition progressed, this was obviously not the case,” says Kate. “I used to say I wanted a crystal ball, but I’m glad that was never an option.”

“Now Ralph has gone, I am sad at times, but mostly peaceful and calm. I feel in a good place mainly because so many things we did along the way - sometimes kindly guided by family, friends and Ralph’s healthcare team - felt right.”

“When Ralph was first diagnosed I had visions of caring for him at home and the two of us sitting on our patio, with a blanket over Ralph’s lap, enjoying a game of Scrabble together. Obviously that was not to be, but it was a privilege to be Ralph’s wife for 14 years - planning for the future, living for the day, and making his Parkinson’s journey with him.” 

Find out more about dementia or caring for someone with advanced Parkinson's