Life and other stuff (Kate)

Early April 2023

Chris’ wife Kate: we sit down at the laptop; I type and Chris talks. I ask him what he’d like to talk about today, sometimes I ask him questions to prompt his thoughts.

“I really struggle …watching TV is getting much worse because I find it difficult to … what are they called? Those things (remote controls).… the three…remote controls…it makes it so hard for me.

I can’t read some books now, but funnily enough some books are more accessible, I don’t know why. I’m revisiting some favourites like Graeme Greene The Comedians…why that one’s ok, I read it in the past…resonates with me… not a long one. I still have the Guardian every week on a Saturday (much to my mother’s horror!) I like the sport part, it’s got good articles….like ones on people’s suffering. The weekly ones…the magazines. (Kate: since writing this in April Chris decided to stop the paper subscription, it was becoming stressful and he no longer took pleasure in reading it. I took a photo of the last newspaper halfway through the letterbox then cried. Chris stills enjoys reading the BBC news on his iPad, though navigating between tabs and apps is becoming difficult.)

“My memory has got worse over the last year…that restricts what books I can read …. how long they (books) are … some are like old friends. I walk into rooms and don’t know why I’m there …. long term memory … some bits are there lodged in my brain like shrapnel … don’t remember dates. I’m still upset and annoyed I can’t drive. I’ve had to give up some things at home. I don’t do any cooking now, because it’s dangerous. Ironing, I dropped it.” (Kate: he didn’t, but it was starting to look hazardous so we decided it wasn’t safe now.)

“Creative Age …. Well, it’s nice getting to know others in the same (boat)… lots of things we do ... playing, enjoying things, people are different ages, free tea and cake … looked after …. brings them together …. friendships …. people can help each other as in a similar (position).

Secret Garden (Kate: this is a wonderful Day Centre that Chris now goes to on two days a week) It’s a group of places in the centre of Cheltenham … brings people together with a range of problems, … there’s lots of people looking after us (carers)… we get a meal. I’ve started doing some singing there.”

Kate: how did the singing come about? “I said to them I’ve sung in the past for a choir in Tewkesbury (Tewkesbury Choral Society) I had to stop because I couldn’t do it anymore. (Kate: the rehearsals were in the evenings when Chris is exhausted and in bed by 8 p.m.) One of the carers asked if I wanted to sing here …. for several years I’ve been moving from a bass to tenor ... everyone really, really liked it, made me feel so … gave me lots of joy. Made me feel I still have things that bring me joy … they said you’ve got to come back … I’ve been called back for an encore! Great interacting with people … some with problems, some people are very old … everybody comes together ...age doesn’t seem to matter. You get lunch as well, we sit with different people, we get a three course (meal).”

(Kate: Chris has an enormous library of music on his iPad – lots of classical, extensive folk list, musicals and some pop. He sang “Bring Him Home” from Les Misérables, a favourite musical our ours that we saw together in London. It’s wonderful to see him take so much pleasure in singing.)

“Music - I just still like listening to it … soothing … it’s something I can’t really put into words … it’s lovely. It’s something you can’t really express … you can touch… it’s not something you can define … it brings huge satisfaction. I was never brilliant at (the flute). I enjoyed it even if I didn’t go up to the highest bands (Kate: he achieved Grade 5!!) Mostly Classical, it’s something you can experience but you can’t define it … otherworldly, takes you to a place that isn’t just isn’t notes and sound … I would use the word transcendental.”

Late May 2023

“Kate has found many things for us to do … she protects me. I need to have her to protect me from doing things that could hurt me … lots of things could be dangerous if she wasn’t there … I need to be careful crossing roads. She looks after me. We go to beaches quite often ….. (Kate: we’ve had 3 short breaks in Swanage, Exmouth and Mumbles since early April). It’s about making things for us to do and see in the future. We still go to lovely places, do nice things, there’s still lots that I can do.

I love my wife so much; we’ve got something special still. In many ways our relationship is still intact and strong. We have a lovely garden.

Friends, they have their own lives. I see Steve (an old work colleague) we go to have ….um…..(coffee) in a local café and he’s able to help me, other friends are just too far away.

We’ve had lovely trips to the coast with Kate’s sisters and husbands. Time on the beach, beautiful places to walk ….. going back to my childhood… I’ve been building “henges” … (Kate: like Stonehenge but made of pebbles!) …walking on the cliffs. A big swathe of grass down to the …. what’s the word… promenade. We’ve gone to Exmouth …. the boys came down didn’t we … lovely views of the promenade … cups of tea and coffee. I love my sons dearly, I’m lucky to have two lovely sons who are caring and we do lots of things together.

We do lots of walks in Croome Court (National Trust property nearby) it’s a lovely place that goes down to the bottom …. a lot of people go there….. it’s very old… wonderful lake with lots of swans. We walk up the hill.”

Kate: time passes so quickly and all of a sudden, it’s the second week in June! There have been lots of changes since we started to write this entry and Chris becomes frightened of this at times. He is now needing help with showering and dressing. Articulating thoughts and words are becoming much more difficult since April. Chris’ becoming more unsettled, struggles to focus on anything for long even when I set everything up for him such as a drink, TV programme, a book or music via his headphones. Going out places is becoming harder as it takes longer to get up and ready to go, walking is more tiring, in fact everything is more tiring! Chris’ mood can be very low at home - facing all of the things that he can no longer do, or struggles to do each day. Chris loves time spent at the Secret Garden daycentre and seems to find himself there, he has fun and laughter, is really sociable. It’s a real oasis for him where he doesn’t have to face all of the difficulties that he faces in the home environment and he’s so well cared for, I’m so glad we found it, we both are. Time to post!