At last Simon had a hot shower today, he really enjoyed it, and was even dressed in his pyjama top which made him look very handsome. After a busy morning sitting out in the chair he was back in bed when I arrived after lunch attempting to have a snooze. I woke him and kept him awake talking for three hours, so I think he will get a good night's sleep tonight (Graham permitting). There were many positive signs today - his breathing mask was off for a long time, and there was some suggestion that he may only have to wear this at night from now on. That would be such a treat. We had a lot of recognisable words in sentences; some of the sentences don't make sense to me in terms of ideas - Malcolm is right that the brain makes unique connections after such an injury. He attempted a long explanation that had something to do with software, and when he realised that I could not understand he told me I was "totally useless". Such a charmer! Later he asked me why I was bothering to help him. The reply to that was easy.
Margaret came in to visit today, and she saw great improvement in Simon. Margaret also took the ward manager to task about some of the care issues, and in particular his near neighbour who was kicking up an awful fuss at one stage. We have a promise that as soon as a bed becomes available in the next ward Simon will be moved to it, most likely tomorrow. I hope and pray that this happens so that he can have some peace. Margaret's complaint did seem to bring about a greater level of responsiveness from the staff, and so I am happier than yesterday. We were also told that there was a chance that Simon could go to the Repat hospital for rehab. This is much closer to us than Hampstead. However, I want to check this out.
Today I discussed a plan with Simon to build a new house in Willunga, and he was very engaged with the design ideas. There is some land there that I might be able to lay my hands on. In all honesty, I don't think our current house will ever be suitable, and I want Simon to have as much independence as he can cope with. So I will find an architect and design a house for Simon, including a shallow lap pool that he can slide into.
Amongst many other activities, Simon took two phone calls today, one from Asher, and one from Gerry. Gerry was astonished by the progress and said that he understood about one in four words. Simon fed himself, and takes drinks and medicines easily. I suspect he might be able to do very well with his left hand. I offered him a white board marker today, but he didn't want to write.
I go to work in the mornings now, and that has been OK. If we can get Simon closer to home then I will be able to work a more normal pattern. Fortunately, I can get a lot done from the home computer. My reading time is dramatically affected - I used to spend two to three hours per day on academic papers, but this has gone out of the window because I spend so much time driving. I will need to rely on past capital for a while. Some colleagues at work have had experience of stroke victims in their families, and are being very supportive and informative. I am beginning to truly appreciate the value of social networking, and will try to write this up in some form. Any suggestions for a publication route from all you academic nerds out there?
Love Marian x
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Hi Marian,
ReplyDeleteIt's so good to hear of Simon's continuing progress - thank you so much for these updates.
Please tell Simon I went to see the Flatlanders last night and was thinking of him. I have a (perhaps totally incorrect) memory that Simon told me he once had Butch Hancock over to his house for spaghetti after a gig. I can quite believe it. The band were good and I spent a lot of it in awe that these guys are still going. As did most of the audience, I think, who were at least a generation older than me, in the main. I reckon Simon would have loved it, though.
I'm not an academic and can't help at all with ideas for the publication route, but think it's a fascinating subject. The way the news spread about Simon's health was astonishing to me, as is the use of this blog to keep everyone in touch. Really interesting stuff.
Love, Jemima
The Repat is the old Repatriation Hospital, which focused on the care of returned soldiers for many decades. The facilities were built in the 40's, but have generally held up well. They've had a lot of experience, I presume, with the care of stroke patients, as they continued to care for returned soldiers for their entire lives. I've had some dealings with them, as my grandfather spent a lot of time there, and we've been there as outpatients once or twice. They always came across well to my eyes. However, I don't know how they compare to the Hampstead Centre, especially given that Hampstead specialise in rehabilitation.
ReplyDeleteGiven the type of stoke that Simon had, and the correlation of it to stress and high blood pressure, I would point out that, for as long as the chap next to him is intimidating him (for wahtever reason) he is going to be posing a direct risk to his health by increasing his stress and blood pressure. Thus this isn't a simply a matter of conveneience, it is a health and safety issue in its own right.
ReplyDeleteThat said I'm really happy to hear that Simon is really starting to 'make the connections'.
Simon often managed to work into conversations just what a lucky man he was to have married you. It is so nice to see his luck in action, if you see what I mean!
Matt
I bet that shower felt soooooo good :o)
ReplyDeleteHi Marian,
ReplyDeleteDidn't want to suggest this before but I've thought from Day One that your lovely blog cries out to be a Guardian G2 article at some point: it would reach so many people who'd be fascinated and maybe helped. There are down sides, but it might be worth considering.
Lyn X
Hi Marian, sorry to miss ya today. Heavy head from watching late night Japanese horror ("The Audition").
ReplyDeleteI think there is a lot to be said for writing an article on the role of social networking in extending care/support. I know Jenny (my dad's wife) has gained vast amounts of practical knowledge about how to support him as his Parkinson's disease advances, and also received emotional support, which as she said, is really important for the carer. I am so glad you have your family around you, at this time.
Great to hear that the legend of Simon and Butch Hancock is propogating. Jemima is quite right, Butch came to have one of Shirley's fabulous meals, after playing a fantastic set in north west London. He travelled back with my ex (Pauline), Simon and me. SHirley not only had a feast waiting, served with all her usual stylishness, but also had been looking after our oldest, Nino, all evening! Nuff Respeck Shirl !
Love
xx
asher