By Meg Pinfield November 11, 2011
One of Ivan’s favourite TV programmes is ‘Keeping up Appearances’, with Patricia Routledge playing the awful Hyacinth Bucket (“pronounced bouquet”). He loves her ridiculous attempts to be correct in dress and behaviour for every occasion.
Perhaps his own upbringing has something to do with this; his mother had a posh dress shop, and used to be very cross if Ivan came home with torn or dirty clothes after being out playing.
He has always considered inward personal qualities more important than outward show. He never judges a sausage by its skin. When he was a senior catering manager, who needed to be smart at all hours of the day and evening, he relied on washable suits, drip-dry shirts, and a spare pair of polished shoes so that he could quickly change and smarten up if need be.
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.
I try to make sure his clothes are, at least, clean and fresh. We have some handsome tartan bibs which cover him from neck to knee at meal times. He is not in the least embarrassed by this. In fact, his table manners have changed considerably, taking into account his occasional swallowing difficulties too. Depending on what food is in front of him, he will eat with his fingers, or use special cutlery with shaped handles, or simply make do with a soup spoon. I am there to help cut up food into manageable bite sizes. (Since he had some frightening choking episodes in the early days after his PD diagnosis, I have never left him to eat on his own).
Recently, his ability to get food tidily from plate to mouth has deteriorated. I tend to fuss over him which does not help. We should be glad he enjoys eating so much that he won’t let mechanical difficulties hold him back.
But this does limit our social life. We used to enjoy going out for gourmet meals, but now, if we are with other people, we eat only the simplest of food, such as sandwiches. I am ashamed to say it is probably my embarrassment – rather than his – which makes us avoid restaurants and supper parties, though he doesn’t seem to mind.
He cared more when he had to give up his walking stick and start using a wheelie walker with seat and brakes. This was after he had fallen and broken his hip, and he needed the reassurance of the walker to help his balance. I believe he felt that using one marked him out as disabled. However, he has – in his usual way – managed to see the positive side of this new development. Not only does he appreciate the sense of security it provides (he has to have it beside him at all times), he also likes the way it gets him moving. Somehow it gives him the momentum to overcome PD episodes of freezing. Once he started using it, we swapped our small car for one which will hold the walker in the back; also it is easy for me to load and unload. In this way we keep mobile.