If your partner has Parkinson’s, it can be tough to think about yourself and how you look after your own wellbeing. Here, three readers share their experiences.
Jane’s husband has had Parkinson’s for all of their married life.
It’s easy to have good intentions around self-care, but harder to put into practice. I find regular, structured activities helps keep me sane. For example, I’ve been going to weekly Hatha yoga classes for more than a decade. As my teacher says: “It’s your time to re-charge your batteries.”
18 months ago, I started going to a weekly meditation and mindfulness class at my local library. It is so relaxing, supportive and life affirming. I try and meditate once a day but it can be difficult at home as I am very aware of my husband’s needs.
As my husband’s Parkinson’s is advancing, I recently started seeing the trained counsellor who runs the meditation group on a one-to-one basis. He encouraged me to do something new so I have just started playing the piano. It’s challenging, especially at my age, but rewarding and helps me to forget all about Parkinson’s.
When I can’t get out in the garden in the winter months, I try and meet up with old friends to walk, then talk over coffee and cake. They allow me to be myself, cry and offload without being judged.
Recognising my own needs and giving myself precious time to do these different activities is important for my self-esteem and confidence. Looking after my physical and mental health allows me to continue to care for my husband to the best of my ability.
Not taking things too seriously and learning to accept what is possible definitely helps both of us.
Les lives with his wife in rural Scotland. She was diagnosed with Parkinson’s in 2016.
The first months after my wife’s diagnosis were not easy emotionally. But gradually feelings of anger and resentment were replaced with a more positive attitude and a degree of acceptance – although we have a long way to go on that road.
Luckily we have always been close and the gradual shift from husband to husband-carer has not been too hard for either of us. 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’ve got involved in lots of local groups and classes separately, which gives us both a bit of space. It is 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. I also often go for an hour’s walk in the morning on my own, and then come back to do an exercise session together.
It can be frustrating being a ‘carer’, and I am sure it is just as frustrating for my wife to be cared for. But keeping active, not taking things too seriously and learning to accept what is possible definitely helps both of us.
Joyce cared for her husband, who died in 2019.
My husband’s Parkinson’s did not come as a shock as I had suspected the diagnosis for nine months before a neurologist confirmed my fears.
We decided to take each day at a time and enjoy what we could. Walking, gardening and being in the countryside were our main interests. We lived by the sea and did not have to walk far to get a great view. Our dog Poppy encouraged us to get out each day.
I like entertaining and we had a lot of friends and family come to stay. Our faith meant a great deal to us, and I continued to oversee a community toddler group attached to our local group. As going away was difficult, my son and his family took us away to a holiday house in the country for three consecutive years. This was always such a treat as it took away the responsibility of having to cope with everything. We planned the days around what my husband could do.
At the time, having more medical help and information would have helped me understand things better, but I was lucky that my husband recognised all I did, and was always grateful.