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Ivan’s reprieve lasted just three weeks. Then he had to be re-admitted into a nursing home. When he returned home in early April, he was very fit. His Parkinson’s disease (PD) symptoms were well under control. We took things easy at first; during the second week, we resumed the care plan, with Ivan going to his daycare centre twice. We also attended a medical appointment, so it was a busy week.


Ivan’s joy at coming home after 5 weeks respite was marred when he discovered his bed had been brought downstairs to the living room. “I feel as if I have been written off!” I explained that, on the contrary, every effort had been made to enable him to continue living independently. Fortunately, he realises that the new arrangement has made his life much simpler, given his slowness and stiffness. Using the stair lift had become dangerously awkward.


People say that a week is a long time in politics. It seems it can also be a long time in Parkinson’s disease (PD). So much can change in just a few days.


Ivan has not been able to do his own shopping for some years now. Parkinson’s disease (PD) has left him with limited mobility and clawed hands so he cannot get to the shops, nor handle cash or cards, without help. Adaptable as ever, he simply asks for such help when he needs it.


Our local TV station announced that January 16th was Blue Monday, the gloomiest day of the year during the bleak post-Christmas slump. Luckily it was a good day for us. We had three appointments offering help and advice for Ivan with his Parkinson’s disease (PD) symptoms and me as his carer.


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, with the onset of Parkinson’s disease (PD), he has simplified his wardrobe further. Nowadays he relies on jogging pants, polo shirts, baggy socks, and zip-up, slipper-like boots – whatever the occasion! This certainly helps me, and the other carers, when assisting him to dress and undress. It also means that he can retain some independence and take himself to the loo. Trousers with hooks, zips or buttons would be too difficult. Although he has no hand tremors, he does have a certain stiffness in his hands, so anything requiring dexterity is difficult for him, including eating.


We have got used to the variety of carers and their irregular arrival times (this initially drove me mad – Ivan was, as usual, un-phased). We have adapted our routine to fit around them. What has surprised and pleased me most is the fact that carers, while they physically care for Ivan, also give me much needed moral support. I have wept on their shoulders after difficult nights, and laughed with them over the little things which can make me scream with frustration. No-one else understands what full-time caring can be like as well as a fellow-carer. We couldn’t be without them now.


It has become urgent to build in help from care providers. We have already applied for a carer’s assessment and we have also had visits from carers’ support workers (from Age UK and the local Rural Community Council). They have provided valuable advice and information on care agencies. They have also helped me to see that there is no shame in being unable to cope. I am not alone as a struggling carer. So now we are, at last, welcoming the help of caring strangers into the heart of our private life.


We communicate on many levels, often without words. Sometimes these days we gesture to each other, which helps us by-pass the word blocks. For example, if he needs to move his feet I might just indicate with my hands where he needs to move them. For some reason he can follow this much more quickly than if I spelt it out in words.