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!
A recent recurrence of a urine infection soon reminded us why he was there. His Parkinson’s symptoms appeared strongly again (difficulty with mobility, and needing help to eat and drink). He even lapsed into inexplicable unconsciousness for a worrying hour or two. Fortunately he was able to stay comfortably in his own lovely room, and was not in any distress. (We had already agreed a policy of his staying put in the event of sudden illness, rather than being sent to hospital.) Fully recovered, he has forgotten it all now, but the episode served as a reality check; he is in the right place for his great age (heading for 93) and current stage of Parkinson’s disease (PD). The nurses and carers at the home are able and available to deal with any eventuality.
He especially needed this reminder as, typically for someone with PD in the later stages, he does not have a realistic understanding of his dependency. He imagines he could manage to live at home independently. He was puzzled that it was he, and not me, who needed nursing care. Having seen me falling apart earlier this year, he can be forgiven for thinking I needed to be admitted! (I am relieved to say that my health is quickly returning to normal now.)
The fact that it often takes two carers to help get him up, washed and dressed, to make sure he finds his way to the dining room for his meals, and to the lounge for his daily social activities, somehow gets overlooked. What he remembers is how he has been participating in these lively activities laid on for residents: sing-songs, gentle exercises, quizzes and reminiscence sessions. He is often the one encouraging those who are less enthusiastic.
He seems to have made good friends with some of his fellow residents. There is a great sense of camaraderie as they face some of the difficult challenges of later life. He is also popular with the staff (mainly women) because of his easy-going nature, and a tendency to break into song in the shower or over breakfast. I have to get used to being just one of many special people in his life. I shed a quiet tear now and again as I learn to accept this diminution of my role.
It tends to be me who gets to hear about things which have gone less well, such as when he has had to wait in bed till after 9am for his turn to be helped up, with not even a cup of tea on offer. Sometimes I act as his advocate, and lodge a complaint if it really seems necessary. Otherwise I just tell him to speak up for himself. He is quiet able to do so, and is paying handsomely for the care he receives.
Such good quality care and so pleasant an environment (beautiful gardens as well as lovely rooms) are things that we feel are worth making sacrifices to pay for. One day he may be eligible for the NHS funding known as ‘continuing care’. He would need to suffer considerable deterioration in his condition to be awarded that financial help. We are hoping he will have many months, if not years, of reasonable health before this happens. He is even hoping to get a telegram from the Queen one day!
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.