Monday, August 30, 2010
Sunday, August 29, 2010
Sunday 29th August
New happenings. Helen and I visited Kaye at Palmerston and enjoyed dangling our feet in her pool. Helen , Susan and I joined Kaye and Shirley at the Saturday morning Frilles morning tea gathering. Helen enjoyed a few visitors at home and received daffodils, perfume and a gorgeous handmade silk scarf.
The spa arrived and is in use!
A series of spa installation photos to follow in the next post. Those familiar with this place will be impressed with the logistics.
Friday, August 27, 2010
27 August 2010
Many happenings and events. Last weekend Helen and I had an action packed time as we had a few shows booked for the Darwin Festival (booked before she started to lose her eyesight). We wondered for a bit whether it was worth going but decided to push on. Susan (Louis' lovely friend from Castlemaine) came too and helped with the logistics of wheelchairs, impaired vision, impaired hearing etc and it was a great success. Sunday night we joined a crowd of 3000 at the Darwin Gardens Amphitheatre to see Tex Perkins' tribute to Johnny Cash. We peeled off at interval avoiding crowds but got to hear Walk the Line and the "I got married in Jackson..." song plus a bunch of interesting history bits and pieces. That night Helen's older brother Robin from Melbourne and younger sister Jennifer from New Zealand and Jenifer's husband Ron all arrived for a visit so the next few days had lots of social aspects. Monday Helen had to 
have a routine staging CT scan at RDH which went well and was over quickly (apart from the nurses bozing the IVC insertion and getting me to do it for them). Then Susan, Helen and I joined Louis at Helen's friend Shirley's house and had a sneak preview of her completed self portrait for the Senior Territorian Awards. Helen couldn't really see the detail of it but was able to imagine to a certain extent having seen the work in progress. We shared lunch then returned to hang out with the family.Tuesday
Louis headed off to Brisbane for a week or so. Helen had a lovely afternoon in the hammock being rocked by Jennifer and that evening Helen, Bilha, Susan and I went to Head Full of Love at Browns Mart. It was a very special performance and although challenging without much vision we had great seats right at the front (courtesy of the wheelchair), lovely beanies to wear (courtesy of Bilha) and at times the actors considerately positioned themselves right in front of Helen where she could get a bit of an impression of what was going on.
Wednesday was also action packed - the last day for the family visitors. Robin and Helen read some of The Orchard together. Ron was inspired to support me in my ambitions to buy a second hand spa for the garden and he and Robin and I spent the afternoon driving to stonemasons, hiring trailers, trying to borrow wheelbarrows and levels, eventually stealing (temporarily) a wheelbarrow which turned out to have a broken wheel and finally resorting to buckets! Ron and Robin moved a 1/2 metre of gravel through the back fence using only buckets and a shovel in less than 2 hours and built me a level pad awaiting spa arrival! I felt blessed. Photographs of spa will follow when the project is completed.
Meanwhile the other garden/house news is that the chickens have been rehomed at Humpty Doo with David and Tamara and their kids where we home their excessive tameness will be a positive rather than the burden it was becoming for us. Here's some last chicken photos of Susan with a chicken pretending to be a bird of prey....
have a routine staging CT scan at RDH which went well and was over quickly (apart from the nurses bozing the IVC insertion and getting me to do it for them). Then Susan, Helen and I joined Louis at Helen's friend Shirley's house and had a sneak preview of her completed self portrait for the Senior Territorian Awards. Helen couldn't really see the detail of it but was able to imagine to a certain extent having seen the work in progress. We shared lunch then returned to hang out with the family.Tuesday
Louis headed off to Brisbane for a week or so. Helen had a lovely afternoon in the hammock being rocked by Jennifer and that evening Helen, Bilha, Susan and I went to Head Full of Love at Browns Mart. It was a very special performance and although challenging without much vision we had great seats right at the front (courtesy of the wheelchair), lovely beanies to wear (courtesy of Bilha) and at times the actors considerately positioned themselves right in front of Helen where she could get a bit of an impression of what was going on.Wednesday was also action packed - the last day for the family visitors. Robin and Helen read some of The Orchard together. Ron was inspired to support me in my ambitions to buy a second hand spa for the garden and he and Robin and I spent the afternoon driving to stonemasons, hiring trailers, trying to borrow wheelbarrows and levels, eventually stealing (temporarily) a wheelbarrow which turned out to have a broken wheel and finally resorting to buckets! Ron and Robin moved a 1/2 metre of gravel through the back fence using only buckets and a shovel in less than 2 hours and built me a level pad awaiting spa arrival! I felt blessed. Photographs of spa will follow when the project is completed.
Meanwhile the other garden/house news is that the chickens have been rehomed at Humpty Doo with David and Tamara and their kids where we home their excessive tameness will be a positive rather than the burden it was becoming for us. Here's some last chicken photos of Susan with a chicken pretending to be a bird of prey....
Tuesday, August 24, 2010
Tuesday, August 17, 2010
17 August 2010
Helen's vision has continued to deteriorate in both eyes which is very sad for us all. The cause is a little uncertain but the visiting opthalmologist concurred that the nerves look abnormally white - as they would if the nerve fibres were dying. She has an MRI booked for Friday which will assess whether there are any brain lesions putting pressure on the nerves.
She had 3 days of IV steroid and 1 injection of B12 and apart from that we will wait and see. Today seems to be a day of a bit more trouble with word finding and conversation and she looks worried a lot of the time. Mental state does continue to fluctuate and all of us are adjusting to the changes in her vision and having to learn to communicate differently.
Louis' friend Susan arrived early on Monday morning for a 2 week visit from Melbourne. Susan and Louis have known each other since she used to live in Brisbane many years ago and she offered to come and give us a hand for a bit. Hopefully we can all tag team with Helen care and also the Darwin Festival and other activities.
The weekend just gone I went down to Sydney for a work meeting and stayed away 3 nights. Louis had returned from GARMA and did sterling duty on his own. There was a series of lovely visitors - Dianne and her Mum Doreen, Kaye, Camille x 2 and a great phone catchup with a long distance friend. Sunday night next week Helen's family - brother Robin (from Melbourne) and sister Jennifer and brother-in-law Ron (from New Zealand) will come to stay for a few days.
She had 3 days of IV steroid and 1 injection of B12 and apart from that we will wait and see. Today seems to be a day of a bit more trouble with word finding and conversation and she looks worried a lot of the time. Mental state does continue to fluctuate and all of us are adjusting to the changes in her vision and having to learn to communicate differently.
Louis' friend Susan arrived early on Monday morning for a 2 week visit from Melbourne. Susan and Louis have known each other since she used to live in Brisbane many years ago and she offered to come and give us a hand for a bit. Hopefully we can all tag team with Helen care and also the Darwin Festival and other activities.
The weekend just gone I went down to Sydney for a work meeting and stayed away 3 nights. Louis had returned from GARMA and did sterling duty on his own. There was a series of lovely visitors - Dianne and her Mum Doreen, Kaye, Camille x 2 and a great phone catchup with a long distance friend. Sunday night next week Helen's family - brother Robin (from Melbourne) and sister Jennifer and brother-in-law Ron (from New Zealand) will come to stay for a few days.
Wednesday, August 11, 2010
Wednesday 10th August 2010
Well since I last posted many things have happened - good and bad. In the end Helen and I were both too wrung out at the end of our Friday outing to go out again so we didn't make it to the Frillies' fashion show afterall. I felt quite regretful about this as by all accounts it was a great occasion. Shirley visited the next day and described the models and the music. Several of Helen's fabulous hats from her Margaret Carstairs days of extravagance were donated and modeled most elegantly and found their way to their special sale rack. I think some have been re-homed already!
Saturday is gone into the past for me now - I can't quite remember what happened although I know I went to the Parap markets and someone apart from Shirley visited Helen. Each morning from Thursday onward Helen commented that "things seem very gloomy" and I was anxious about what was happening with her vision.
Sunday we were planning ahead to be able to enjoy going to Bilha's Cabaret performance - Tru Razzle and mindful of the energy collapse on Friday we spent a fair bit of Sunday resting and conserving our strength. All for a great result as Helen and I not only managed to get to the 2 hour show but enjoyed it thoroughly! The performers gave us a medley of Cabaret and Show tunes including some Rocky Horror and a great Kath and Kim-esque homage to Julia Gillard. There were fabulous frilly undies galore and swishings of skirts and flauntings of cleavages. Helen felt Bilha stole the show when she appeared. The other delightful surprise was to bump into Helen P and her daughter Kate in the pre-show gathering.
On Monday we had a date to take Shirley out to Cullen Bay Day Spa for the first facial of her life and the first for Helen for quite a long time (although in fact Shirley had to take us as we were car-less). Helen coped remarkably well with walking using the walker up the street to the place and then back again afterward. Shirley took us out for afternoon tea and we enjoyed poking fun at the worst cups of tea in the world while Helen had pineapple juice.
Monday night I went to my first night class of Mahjong at Casuarina and left Helen alone for 2 hours. We both had thought this would be ok but in fact when I got back she was very anxious and worried and it was upsetting for both of us. With her variable time sense and memory issues it is too hard to be sure how much time is passing and where is everyone etc.
Tuesday turned into a big, chaotic and distressing day. The main event was to attend the Opthalmologist in the afternoon. In the lead up time we had visits from a plumber, a gardener, a physio, I attempted to install grab rails in the downstairs bathroom and stuffed it up, the respite visitor came, the chickens caused chaos on the verandah and meanwhile both our cars were in at different smash repair places being fixed and we ran out of dog food and milk and various bits and pieces. Luckily Kaye arrived at about 2ish for what the poor thing hoped would be a short visit and I pounced on her to help keep H company for a bit while I dashed out and then to take us out to the opthalmologist appointment.Despite calling ahead to check how late he was running we still had to wait almost 2 hours to be seen and then had a brief, unsatisfying visit. He said that Helen had radiation induced optic neuropathy in both eyes and radiation induced retinopathy in her L eye (presumably this is the source of the new rapid deterioration). Her L eye was much worse today than it had been on Thursday of the preceding week. He could offer no timeframe on progression nor options for treatment so it was pretty grim.
He felt certain radiotherapy in the past is the cause and seemed to believe there is no option for action despite the rapid changes which make me think surely something can be done.
Anyway - I sobbed and Helen soothed me!
Kaye took Helen out to dinner at the Airport resort while I saw a friend and then we all returned home late having missed the night-time carers and dog dinnertime and found the chickens roosting on the armchair out the back! I manged to get dogfood at least so Jed for one was happy and Helen and I watched a repeat episode of Foyle's War for its soothing qualities.
This morning she told me she had had "the most wonderful sleep" and we have had a special visit from Helen P and Kate during which Helen enjoyed the first coffee she has had in months and loved being with her friend.
Further information on vision as it comes to hand - but at this stage she can't see much at all so be mindful of this when visiting.
Saturday is gone into the past for me now - I can't quite remember what happened although I know I went to the Parap markets and someone apart from Shirley visited Helen. Each morning from Thursday onward Helen commented that "things seem very gloomy" and I was anxious about what was happening with her vision.
Sunday we were planning ahead to be able to enjoy going to Bilha's Cabaret performance - Tru Razzle and mindful of the energy collapse on Friday we spent a fair bit of Sunday resting and conserving our strength. All for a great result as Helen and I not only managed to get to the 2 hour show but enjoyed it thoroughly! The performers gave us a medley of Cabaret and Show tunes including some Rocky Horror and a great Kath and Kim-esque homage to Julia Gillard. There were fabulous frilly undies galore and swishings of skirts and flauntings of cleavages. Helen felt Bilha stole the show when she appeared. The other delightful surprise was to bump into Helen P and her daughter Kate in the pre-show gathering.
On Monday we had a date to take Shirley out to Cullen Bay Day Spa for the first facial of her life and the first for Helen for quite a long time (although in fact Shirley had to take us as we were car-less). Helen coped remarkably well with walking using the walker up the street to the place and then back again afterward. Shirley took us out for afternoon tea and we enjoyed poking fun at the worst cups of tea in the world while Helen had pineapple juice.
Monday night I went to my first night class of Mahjong at Casuarina and left Helen alone for 2 hours. We both had thought this would be ok but in fact when I got back she was very anxious and worried and it was upsetting for both of us. With her variable time sense and memory issues it is too hard to be sure how much time is passing and where is everyone etc.
Tuesday turned into a big, chaotic and distressing day. The main event was to attend the Opthalmologist in the afternoon. In the lead up time we had visits from a plumber, a gardener, a physio, I attempted to install grab rails in the downstairs bathroom and stuffed it up, the respite visitor came, the chickens caused chaos on the verandah and meanwhile both our cars were in at different smash repair places being fixed and we ran out of dog food and milk and various bits and pieces. Luckily Kaye arrived at about 2ish for what the poor thing hoped would be a short visit and I pounced on her to help keep H company for a bit while I dashed out and then to take us out to the opthalmologist appointment.Despite calling ahead to check how late he was running we still had to wait almost 2 hours to be seen and then had a brief, unsatisfying visit. He said that Helen had radiation induced optic neuropathy in both eyes and radiation induced retinopathy in her L eye (presumably this is the source of the new rapid deterioration). Her L eye was much worse today than it had been on Thursday of the preceding week. He could offer no timeframe on progression nor options for treatment so it was pretty grim.
He felt certain radiotherapy in the past is the cause and seemed to believe there is no option for action despite the rapid changes which make me think surely something can be done.
Anyway - I sobbed and Helen soothed me!
Kaye took Helen out to dinner at the Airport resort while I saw a friend and then we all returned home late having missed the night-time carers and dog dinnertime and found the chickens roosting on the armchair out the back! I manged to get dogfood at least so Jed for one was happy and Helen and I watched a repeat episode of Foyle's War for its soothing qualities.
This morning she told me she had had "the most wonderful sleep" and we have had a special visit from Helen P and Kate during which Helen enjoyed the first coffee she has had in months and loved being with her friend.
Further information on vision as it comes to hand - but at this stage she can't see much at all so be mindful of this when visiting.
Friday, August 6, 2010
Friday 6th August 2010
The week just gone Helen and I have been on our own again in Darwin (apart from Jed and the chickens and Helen's lovely friends). Louis has gone off to the GARMA Festival on the Gove Peninsula at Yirrkala to be a volunteer - a great opportunity by all accounts. David has headed back to Melbourne (complete with camel steaks wrapped up in his clothes as a souvenir) and Doug is back in Natimuk working all over Victoria for the DPI.
Earlier in the week Mum's friend Diane brought over Moussaka for dinner with us and we had quite a celebratory meal finishing with orange and almond cake. Kaye has visited Helen's house twice and Shirley once and today Helen and I are having a beautiful tropical lunch at Kayes' house with Barramundi caught by her neighbour and papaya grown by her daughter-in-law. This afternoon we plan to play scrabble.
Physically Helen is doing very well - she's eating and enjoying food and has come back up to 48.5kg. She can stand up from a chair on her own again and is using the walker more and the wheelchair less. Mentally she's pretty good although still variable. Slow to process at times and occasionally suffers from the strong deja vu phenomenon I've described before. Other times very with it.
Sometimes she has a little cough and seems breathless - still no pain at all thank goodness.
The not so good news is that yesterday I took her for an eye assessment as she is still having problems with depth perception, sometimes feels her glasses don't work and yesterday morning said everything seemed dark and that she couldn't see my face properly. The assessment revealed she is basically blind in her R eye and some what diminished in the periphery of her L. Although having said that the vision in the left is normal for reading with glasses and for distance without it.
This is a new development but has probably been happening gradually over time. Makes me sad but Helen is amazingly accepting.
Earlier in the week Mum's friend Diane brought over Moussaka for dinner with us and we had quite a celebratory meal finishing with orange and almond cake. Kaye has visited Helen's house twice and Shirley once and today Helen and I are having a beautiful tropical lunch at Kayes' house with Barramundi caught by her neighbour and papaya grown by her daughter-in-law. This afternoon we plan to play scrabble.
Physically Helen is doing very well - she's eating and enjoying food and has come back up to 48.5kg. She can stand up from a chair on her own again and is using the walker more and the wheelchair less. Mentally she's pretty good although still variable. Slow to process at times and occasionally suffers from the strong deja vu phenomenon I've described before. Other times very with it.
Sometimes she has a little cough and seems breathless - still no pain at all thank goodness.
The not so good news is that yesterday I took her for an eye assessment as she is still having problems with depth perception, sometimes feels her glasses don't work and yesterday morning said everything seemed dark and that she couldn't see my face properly. The assessment revealed she is basically blind in her R eye and some what diminished in the periphery of her L. Although having said that the vision in the left is normal for reading with glasses and for distance without it.
This is a new development but has probably been happening gradually over time. Makes me sad but Helen is amazingly accepting.
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