It’s social life, Jim, but not as we know it

MARIE: We’re at the start of a busy summer of visits from family and friends, mostly ‘Jon’s people’ a few at a time for longer stretches and ‘my people’ in brief hordes. Looking at the calendar, there’ll never be more than 6 days between visits from now and until at least early October. This is a cause for much joy and celebration (and overeating), because it’s wonderful that these lovely people want to spend time with us in our rural exile-idyll.

But with Parkinson’s in the house with us, it’s not as easy as it used to be. Jon is slow to get started in the mornings and I need to be on hand to help, even if the help turns out not to be necessary some days. Jon also needs regular breaks, when we’re out and about he needs to sit and rest every so often, and when we’re home he zones out in his comfy chair or goes for a little lie-down. Late nights are a thing of the past, especially if he’s to be functional the next day. But within those constraints he does hugely enjoy these visits from home.

For my part, I feel the absence of an active co-host. We’ve chosen our families wisely and each and every one of them is helpful and thoughtful, nevertheless I almost invariably find myself first to rise and last to bed. Plus there’s the planning and shopping ahead of visits and the cleaning and laundry after. That said, I too love the visits and wouldn’t miss them for the world.

A compromise has to be struck between the demands of Parkinson’s and our guests. This is an evolving negotiation with no permanent solution possible as the disease develops, but for now the ground rules are that guests must stay in the delightful dungeon we have kitted out for them until 10 am, must sort themselves out for breakfast, and must not expect anything to happen in a hurry. Plus the more help we get with the cooking and washing up, the happier I am.

Last week’s visit from Jon’s son and daughter-in-law was the first visit of the summer and (weather aside) it couldn’t have gone better. Not only was I relieved of cooking half the time, they also helped us shift furniture, fix computers, burn garden rubbish etc. etc. On top of which we made some interesting excursions, including a day out at a large hole in the ground that Jon’s been wanting to see for ages. I hope the kids enjoyed it as much as we did.

Companionship

MARIE: We’ve been immensely remiss and haven’t blogged for an age. I’ve been busy in the garden, preparing to receive a family of bees and growing my rhubarb to such a size that you must admit the leaves make my bum look positively tiny. Jon’s been busy with computer matters and still is. He’s such a nerd and claims to actively enjoy the hours and days it can take to fix a bug or get a new device functional.

There’s nothing new on the pump front. We’re not surprised but perhaps very slightly disappointed not have an appointment yet. But I guess elective surgeries grind to a halt during the summer just as the rest of society. We’ve decided to be patient until the school holidays are over. If we still haven’t heard by then, I’ll have to get on the phone.

Meanwhile, we made an application some weeks ago for an escort service for Jon. Not perhaps quite as exciting as it sounds – I understand a firm hand on the elbow is about as up close and personal as it gets – but an opportunity for Jon to get out and about without having to rely on me.

He wants to spend hours on end in electronics shops. He wants to return over and over to one particular museum to perfect his photo of one particular exhibit. He wants to go in search of the perfect desk chair, and he wants to go fishing, and maybe he wants to attend lectures in bioscience. But he does not want to wait for me to have the time, and he certainly does not want to wait for me to have the inclination. And although I want to help Jon and be available to take him places, I recognize that too often recently my other commitments have gotten in the way of his plans. That’s not right. It made him feel a bit isolated and made me feel a bit guilty.

But then I discovered that our local authority runs this service (which they wisely omit to advertise) where those with permanent disabilities can get a free escort for up to 15 hours per month. We thought it would be brilliant for Jon to have someone who can drive him places and help him find his way round and give him a hand when he gets shaky and help him remember the drugs etc. etc. etc. – basically what Jon calls a thinking-brain dog.

Yesterday was the meeting to decide on our application and to our mid-sized surprise, it was approved almost straight away. Now we’ll have to see if the local authority has a suitable escort on their books. If not, we can find somebody ourselves – perhaps someone a wee bit international from Jon’s old language school.

Government-funded freedom (for both of us) – not bad!