Caring for Jo: Les's story

Our Parkinson’s journey began around 10 years before Jo was officially diagnosed. We noticed her left arm was not swinging as much as normal. Initially we thought that she’d damaged some nerves in her shoulder, but as time went on, there was no improvement. 

After being referred to a neurologist, Jo attended clinics 4 times over a year with no real diagnosis. During the same period though, her symptoms, including increasing stiffness and slowness of movement, were gradually getting worse. 

In total, we saw 4 consultants over a number of years before Jo was told she had Parkinson’s in 2016. Before that happened though, we’d researched Parkinson’s and other neurological conditions online and had decided that of all the possibilities, Parkinson’s, while not being the best diagnosis, was one of the ‘least worst’. When the diagnosis was confirmed, it was a relief in some ways to know what we were dealing with.

Life changes

Before Jo was diagnosed, we were living in a large Victorian house which was becoming harder and harder to cope with. As our 2 daughters had now left home, we decided it was time to make some major changes to our life.

We bought a fairly rundown cottage in a small village and fully renovated it to meet our changing needs, including putting in a downstairs bathroom. 

While we were working on the house, I reduced my working hours to 3 days a week and in 2016, we moved in. At the same time, Jo and I decided to make the best of our time and health, and I ultimately took early retirement. 

Acceptance

The first few months after Jo was diagnosed were not easy emotionally. I think that everyone who is diagnosed with a major illness finds it hard. We all feel anger and resentment but you have to realise that it is pointless to rail against a condition. 

We were helped by a new GP who was both knowledgeable and sympathetic, Jo’s consultant and a great Parkinson’s nurse, who steered us towards Parkinson’s UK. We were also lucky enough to attend 2 Young Parkinson’s events in Stirling, close to where we live, which are always very encouraging and uplifting events. 

We’ve always been a close couple, but over the first year or so we were re-establishing our relationship with so many new factors - a new house, retirement and Parkinson’s. It was easy to discuss our feelings and emotions about what was happening, but at times it was frustrating.

There were times when we’d go over the same ground again and again without making any real progress. Jo has experienced anxiety and depression and this did have an impact when we talked about things. 

Gradually though, we began to put things into perspective and started to accept Jo’s situation and move on - although we still have a long way to go on that road. 

Learning what's possible

Early on, we settled into a comfortable routine. While Jo’s health was deteriorating, it was a slow process and did not have too great an impact on our lives. 

Over time though, we’ve had to learn to accept that what is physically possible 1 day might not be another and try not to get too frustrated when we have to make last minute adjustments to plans. Despite that, we’ve still managed to do a lot.

A year after Jo’s diagnosis, we went to visit our youngest daughter who was living in Shanghai in China. We had our reservations about how realistic the trip was, but with a bit of planning and a lot of luck, it went amazingly well. And closer to home, we’ve carried on visiting family in England and friends in France, as well as generally having a good social life in the village. 

Shifting roles

The shift from husband to husband-carer has been gradual. Being a ‘carer’ can be frustrating, and I’m sure it’s just as frustrating for Jo to be cared for. 

On a practical level, I prepare all the food, which I’m happy to do as it’s something I’ve always enjoyed. So far, Jo is comfortable with this. She still keeps absolute control of the washing machine, although I am allowed to hang out clothes now! 

Jo’s anxiety increased during the pandemic and she has found it hard to put her worries into perspective. The constant pandemic news has been difficult to cope with and life has been a struggle. For the first time, I have felt more like a carer than a partner.

After talking to her specialist though, we were able to adjust her medication and she was also referred to a psychiatrist who she sees fortnightly. Jo’s mood has lifted greatly and although we have a few wobbly moments her spirit and confidence is returning. 

Time apart

I am conscious that it’s important to have some activities outside of our home and relationship, which gives us both a bit of space. 

I enjoy restoring old motorbikes in my workshop, which gives us both time apart. I also have an allotment and a garden to look after. I do try to involve Jo with this, although that usually involves me doing a lot of digging while she happily supervises!

It’s hard to judge exactly how much help to give someone you care for without taking away too much independence, but having some outside activities has given us a structure to work around. 

Reflections

Looking back over these past few years, we feel lucky, not in having Parkinson’s, but in being forced to re-evaluate our lives and find a kind of harmony that works for us.

We are both grateful that Jo’s health precipitated us making a major change to our lifestyle and we have been able to enjoy having an extra 5 years of retirement together while Jo’s health is manageable. 

We are lucky we have a strong relationship, but keeping active, not taking things too seriously and learning to accept what is possible definitely helps both of us to work together and support each other on this journey.