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Our home care agency never knew whether they should send two carers to help Ivan get up, washed and dressed, or just one. It messed up their rota. So it was decided that he would need to be cared for in a nursing home setting because of this variability.


We have a tussle about that wretched mat every time I leave him alone in the room. Before I go, I make sure the mat is in place and connected.


Although Ivan has memory problems occasionally, due to his Parkinson’s disease (PD), he also has clever ways of remembering things. We have a friend called Des who had a toe amputated. I was telling Ivan some anecdote about Des, and wanted to be sure Ivan knew who I was talking about. “Yes”, he said “Des No-Toe”. I was perplexed, but then remembered about the amputation.


When someone with Parkinson’s disease (PD) gets older, that person is likely to be coping with other health problems too. Ivan is approaching his 93rd birthday, and I always say he has “Parkinson’s Plus”; in his case, Parkinson’s plus heart disease, Parkinson’s plus Diabetes Type II, Parkinson’s plus arthritis, and so on.


It seems my role as a carer is yet to come to an end. As I have accompanied Ivan through all his experiences with Parkinson’s disease (PD), I do have some insights to offer to those who are now responsible for his welfare. I serve as a human “memory stick”. While Ivan happily chooses to let go of the less acceptable memories regarding his developing PD, I am able to recall, or look up, all of the details from his first onset of symptoms (stiffness and slowness), through diagnosis and adjustment of medication. His capacity to focus only on the good times, and mainly just the present moment, stand him in good stead for coping with his life.


Three months have passed since Ivan moved into the local nursing home. He has been exceptionally well, once he got over the initial infection which necessitated his admission. In fact, we have even considered whether he should return home to live, so quickly do the memories fade of sleepless nights and troubled days!


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.