Finding Respite

06 Dec 2011 by Meg Pinfield

Carers need breaks. According to the charity ‘Parkinson’s UK’, caring for someone with Parkinson’s disease (PD) can be particularly stressful. They mentioned this during Carers Week last June and based it on their survey of about 2,000 PD carers – so maybe people like us need breaks more than most carers!
In my case, the number of people urging me to take a break kept growing, but Ivan and I still resisted. It is hard when the person you are caring for is your dearest companion. We didn’t want to be apart and felt we would worry about each other if we were separated.

Gradually we are learning to loosen the ties: he goes to day care once a week where there are several clients with PD, and the staff prompt him to take his levadopa medication with his lunch and supervise his eating in case of swallowing difficulties. Also, there are carers who come each morning to help him shower and dress. They cope well with his PD mobility and communication difficulties – so why couldn’t we go a step further and spend a few days apart?

We tried staying in a nursing home together for a week of respite care. The facilities were great, the kind staff already had many PD residents and I was free to come and go. Unfortunately Ivan was not impressed with the food, nor did he like seeing his future mirrored in the residents who were further down the Parkinson’s road.
We visited another place this year with the same plan in mind – that both of us could stay there together for a week. The matron looked at me meaningfully and said “Would you really have a rest if you came too? Would you be able to let go?” I reluctantly agreed with her.

As usual when taking new steps in the journey of a Parkinson’s patient and carer, we were eventually forced into it. An elderly aunt was visiting from America – my last relative of that generation. She would not be able to travel to see us, so we planned to visit her. I booked us a disabled-adapted room in a motel, and organised for local carers to come in each morning to help Ivan. We even arranged a taxi for the 500 mile round trip. Then one day Ivan admitted he couldn’t face the upheaval. It was a rare reality check on his part, and I admired his honesty. I am usually the one who says that an activity or outing might be too much for him.

I felt I must go to visit my aunt, even if he couldn’t, so once again we had to find a caring solution for him.
We tried out a local nursing home for a couple of days: his room was lovely and the staff were welcoming. I enjoyed the down-time, but his verdict was that he was lonely and that the home really was “God’s waiting room”.
With time running out, we finally organised live-in care, an expensive but flexible solution. The care manager and designated carer came to visit us and we discussed everything Ivan would need in my absence. They said they could meet our requirements as the carer had experience of PD patients, and older people generally. She came the day before my departure to learn the ropes, and then I left them to it.

I was happy, the carer was happy, and even Ivan was content – mainly as he was able to stay in his own much-loved surroundings. I was amazed how relaxed I felt, knowing that there was someone devoting herself to his care, just as I would have done. We have even planned my next break – a pre-Christmas trip to London. Watch this space!

About the Author

Meg Pinfield
I am now in my mid-sixties, and started out as a trainee teacher after which I worked in London for the Government employment service. Following the breakdown of my marriage, I left London for Sussex and took up admin-secretarial work, initially at Surrey University. I then moved to Geneva, Switzerland, where I worked for international organisations for 6 years, including a spell at the World Council of Churches. This job involved memorable trips to Africa and around Europe.

Changing direction, I next found myself in Western Massachusetts, USA, studying for a postgraduate degree in counselling psychology and working various part time administrative jobs.

However, by 1993 my ageing parents needed me, so I moved to Cornwall to be near them. It was there that I met my husband Ivan, who is a family friend and was another recent incomer, and we married in 1996. He was diagnosed with Parkinson’s disease in 2006 and since then I have been his carer. I have no children of my own, but I am part of a large extended family, and also share the joys of being a parent and grandparent with Ivan’s family. For light relief I am currently studying maths and painting.