Ray’s wife Maureen, 81, was diagnosed with Parkinson’s in 2010. She has since developed dementia and 73-year-old Ray is her carer. Here he shares their unfolding story and how his role has changed as Maureen’s condition has progressed.
“The first I knew anything was wrong was one Christmas when Maureen was writing cards out and she mentioned her writing was getting smaller,” remembers Ray. “I put half an ear to it, but that was it really.”
“At the time, we were just going through life. I was still working. We saw the children and grandchildren, socialised and went on holiday. It was a decent life really.”
After visiting her GP, Maureen was referred to a neurologist who diagnosed Parkinson’s. Ray says: “I had a good friend who has had Parkinson’s for over 20 years and experienced involuntary movements.
Maureen never had visible symptoms, so although at the time I thought it sounded serious, I just couldn't believe that what Maureen had was the same as what my friend had.
“I still didn’t really see it as affecting our lives. But I definitely went through a period of self-denial,” admits Ray.
I started to educate myself and it was only then that I realised how much there was to the condition.
After the diagnosis, Ray and Maureen were put in touch with a Parkinson’s local adviser who shared information about the condition with the couple and told them about the benefits they may be entitled to claim for.
“I started to educate myself and it was only then that I realised how much there was to the condition,” says Ray.
“That’s also probably the first time I realised it was a progressive condition and it would get worse over time - that’s when the seriousness of the situation became more apparent. I just hoped the progression would go slowly.”
The local adviser also told Ray and Maureen their Parkinson’s UK local group, although it’s something the couple didn’t feel was right for them. Ray explains: “I didn’t want to go because I didn’t want to see a snapshot of the future for Maureen - or for me.”
I took the dementia diagnosis more seriously than the Parkinson’s diagnosis...But my mum had died of it, so I had more of an insight into it.
Getting on with it
The biggest challenge in the months after diagnosis was managing the medication regimen.
Ray explains: “Until Maureen was diagnosed with Parkinson’s, neither of us took any medication, so we had to quickly get on top of that. I’d describe myself as the more calculating one in our relationship, so I became responsible for making sure Maureen took her medication on time.”
In the first couple of years, nothing really changed at home. “We just got on with our lives, but,” as Ray describes, “Parkinson’s is like a sleeping giant that slowly, slowly creeps up on you.”
6 years after Maureen was told she had Parkinson’s, she was diagnosed with Parkinson’s dementia. “I took the dementia diagnosis more seriously than the Parkinson’s diagnosis,” admits Ray.
“But my mum had died of it, so I had more of an insight into it. I remember as we left the appointment, Maureen said to me, ‘Well that’s the end of our happy little life.’”
Shortly after Maureen was diagnosed with dementia, the DVLA suspended her driving license. “It was definitely at this point that I had to start stepping up my role as a carer,” says Ray.
“Now I do 90% of the meal planning, shopping, food preparation and cooking. Maureen does come to the shops with me, but it would be difficult for her to cook because she gets confused. I think I’m becoming quite a good cook!
“Maureen needs help with technology like her mobile phone or tablet - basically anything that needs switching on or off. Her dementia also seems to cause a disconnect between what she sees and what her brain identifies it as.
"So for example, sometimes she’s looking for her glasses, but picks up her phone. Or on other occasions she asks for something by name when she means something else.
“My role in managing Maureen’s medication has now also stepped up from making sure she takes it on time, to organising and administering everything she has to take,” Ray explains.
“She uses an 8-compartment alarmed daily pill box, which I fill and set for her. When the alarm sounds, she should take a tablet, but she can make errors or not hear the alarm.”
What if I die? Maureen, and I, wouldn’t want a care home to be the answer. Maybe she could live with a relative, but that’s a big commitment for someone, and what happens to our home?
The global pandemic has been felt sharply by Ray. He explains: “We’ve not been able to get face-to-face appointments with our GP, Maureen’s specialist or Parkinson’s nurse. The same goes for the mental health team. We’ve had phone calls, but changes in Maureen’s condition are not really being monitored.
“While I know help is out there, I’ve always seen myself as a problem solver so try and sort things out myself. This situation though is certainly testing my mental fortitude, often to the limit. I’m trying to stay strong, but I have felt very alone.”
As Maureen’s Parkinson’s and dementia progresses, it does raise questions about how the future will unfold for the couple. Ray admits, “We don't really talk about the future, but I think about it a lot. What if something happens to me?
“I recently spent 3 weeks in hospital. Maureen’s children helped out by sorting a rota to stay with her. But it wasn’t easy for them as they work. Medication mistakes were made, and Maureen got a bit confused by the changing faces,” says Ray.
“This was only temporary, but what if I die? She, and I, wouldn’t want a care home to be the answer. Maybe she could live with a relative, but that’s a big commitment for someone, and what happens to our home?”
Perhaps Ray’s biggest struggle though is watching Maureen slowly decline. “The hardest thing about this condition is having to see my beautiful, effervescent, outgoing, clever, funny wife and partner disappear before my eyes, admits Ray. “For now though, Maureen’s now my key role in life.”