Helen's 71st Birthday is almost upon us! This Saturday the 2nd April. For Darwin friends (or anyone interstate who's able to come of course) we are planning a low key gathering at Helen's house in The Gardens on the Saturday afternoon - say 2-4ish.
In other news since I last wrote - I have been to-ing and fro-ing a bit and have now started another locum for 4 weeks at Danila Dilba Aboriginal Health Service in Darwin allowing both for some mental stimulation outside the house and the chance to earn a little money. Louis and Emma have mostly been here with Helen and have been doing sterling work cleaning up some of the garden overgrowth and working on Helen's tax from 08/09, Jo is still caring 3 days a week which is going well and Douglas came up a few days ago. Right at the moment Louis and Emma have "popped" over the Bali for a week on a sudden whim and Helen has had her first trial of the weekend respite house available sometimes through NT Carers. Doug went to visit her there (as the rest of us were away) and his comment was "ok but not great". We are bringing Helen home again this afternoon so will be interested to see how she experienced it. Both dogs are well and recovered from their various health issues (apart from Umphy's mysterious bald patch on his shoulder).
Helen has also remained in good form since I last wrote and has been enjoying having more people around. She has been listening to more books and has made a mental transition so she feels as if she has "read" a book after she listens to it. A recent one from Vision Australia was a biography of A A Milne which seemed apropos after our Winnie The Pooh phase.
Monday, March 28, 2011
Tuesday, March 8, 2011
8th March 2011
Helen continues very well (especially compared to how she was 2 weeks ago). Louis and I are both in Darwin with her and tomorrow Louis' friend Emma arrives as well. We have been re-organising our home care arrangements and have a lovely woman called Jo looking after Helen on Mondays, Wednesdays and Thursdays. Louis has managed to finesse the frustrating funding system to better utilise our government $ - rather than half of it being sucked up by administration fees and suchlike.
We are also looking at both respite time and permanent placement options in nursing homes as well as continuing to try to offer good care at home. Unfortunately as the system goes you really have to do all things at once and to negotiate a massive amount of bureaucracy....seems a shame that we are finally getting the home supports worked out better just when this time may be ending.
Since I have been back Helen has enjoyed a few talking books from Vision Australia - including 44 Scotland St which she previously received as a book from Cousin Julie but didn't finish before she lost her vision. She also was able to listen in on a Book Group Discussion which is a monthly Telelink "interest group" organised via Vision Australia. They were discussing "Sold" which was a nasty-flavoured book about slavery which Helen didn't finish, but she says she found the discussion stimulating nonetheless.
We are also looking at both respite time and permanent placement options in nursing homes as well as continuing to try to offer good care at home. Unfortunately as the system goes you really have to do all things at once and to negotiate a massive amount of bureaucracy....seems a shame that we are finally getting the home supports worked out better just when this time may be ending.
Since I have been back Helen has enjoyed a few talking books from Vision Australia - including 44 Scotland St which she previously received as a book from Cousin Julie but didn't finish before she lost her vision. She also was able to listen in on a Book Group Discussion which is a monthly Telelink "interest group" organised via Vision Australia. They were discussing "Sold" which was a nasty-flavoured book about slavery which Helen didn't finish, but she says she found the discussion stimulating nonetheless.
Monday, February 28, 2011
Natalya, Helen and Lil at the Ski Club
Documentary proof Helen is better - this was unimaginable before I left Darwin!
Sunday, February 27, 2011
26th February 2011
Good news! Helen has improved a lot. It's a bit mysterious to understand - I must say I wish I felt there was an all knowing, all powerful wise and caring health provider giving an overview to our situation (this person doesn't really exist outside my fantasy - no serious reflection on the actual health providers involved). We can deal with anything but the ongoing guesswork and uncertainties are so exhausting.
Current theories: she did seem to have a urinary tract infection (which can affect mental state) but after 3 days on the correct antibiotic there wasn't much improvement - more just a stabilising state; she might have had a virus - dry cough and conjunctivitis after we had a baby to stay who was sick and whilst I had viral symptoms; she might have some peculiar ongoing inflammatory process which was revealed by stopping steroids on the 8th Feb. Against the steroid theory - she was only on a tiny tiny dose for months before stopping, various specialists suggested stopping it and thought it could not be doing anything useful at this stage, she didn't seem dramatically worse until ~ 10 days after stopping it (when she had probably caught the UTI plus/minus virus). For the steroid theory - she improved enormously after 2 doses of steroid. Started again (at a higher dose) on the 24th Feb. Also for - she started to develop pink spots over her torso, arms and face again which looked a bit vasculitic and which she used to have earlier in the illness and her GP theorised that she may have had a vasculitis affecting her brain (probably induced by cancer hormones) which caused the original mania. Another theory (my own) is that having been on steroids constantly in one form or another since Sept 09 her own body's capacity to make a steroid response to stressors is totally downregulated or absent and getting UTI/virus sent her over the edge into Addisons.
Anyway as you can no doubt see the lack of anyone else seeming to be in charge or thinking about all of this means that I think about it all a lot! The bottom line is she is so much better now - alert, able to have interesting conversations, eating, no problems swallowing. Not sleeping all day long. Able to walk safely to the toilet. Still intermittently confused but a bit more like she was in Melbourne - yesterday developed the belief that she was in an "office" and couldn't let go of this.
On Thursday her friend Marlene made a long visit and Mum was able to enjoy all of this which was really lovely as she hadn't seen Marlene for many months. Other enjoyable events of the week included visits from Shirley and Lil (recently back from showing her work in Indonesia), a Vision Australia "Quality Living" telephone group (the first one), listening to talking books and the company of Natalya (my friend from Melbourne who has come to be Helen's carer for a week).
Mum has said several times of Natalya "I think she's lovely" which makes it much easier for me to go away for a bit - plus the fact that Natalya demonstrably is lovely and also that Helen has stopped deteriorating and in fact improved!
I am now in Hawaii of all places - for a week - visiting my friend Shannon and family who normally live in Seattle. Louis will come to Darwin to take over from Natalya on Monday and I will return to Australia and Darwin a week later.
Hence this blog will lapse for a week unless I learn anything important long distance.
Current theories: she did seem to have a urinary tract infection (which can affect mental state) but after 3 days on the correct antibiotic there wasn't much improvement - more just a stabilising state; she might have had a virus - dry cough and conjunctivitis after we had a baby to stay who was sick and whilst I had viral symptoms; she might have some peculiar ongoing inflammatory process which was revealed by stopping steroids on the 8th Feb. Against the steroid theory - she was only on a tiny tiny dose for months before stopping, various specialists suggested stopping it and thought it could not be doing anything useful at this stage, she didn't seem dramatically worse until ~ 10 days after stopping it (when she had probably caught the UTI plus/minus virus). For the steroid theory - she improved enormously after 2 doses of steroid. Started again (at a higher dose) on the 24th Feb. Also for - she started to develop pink spots over her torso, arms and face again which looked a bit vasculitic and which she used to have earlier in the illness and her GP theorised that she may have had a vasculitis affecting her brain (probably induced by cancer hormones) which caused the original mania. Another theory (my own) is that having been on steroids constantly in one form or another since Sept 09 her own body's capacity to make a steroid response to stressors is totally downregulated or absent and getting UTI/virus sent her over the edge into Addisons.
Anyway as you can no doubt see the lack of anyone else seeming to be in charge or thinking about all of this means that I think about it all a lot! The bottom line is she is so much better now - alert, able to have interesting conversations, eating, no problems swallowing. Not sleeping all day long. Able to walk safely to the toilet. Still intermittently confused but a bit more like she was in Melbourne - yesterday developed the belief that she was in an "office" and couldn't let go of this.
On Thursday her friend Marlene made a long visit and Mum was able to enjoy all of this which was really lovely as she hadn't seen Marlene for many months. Other enjoyable events of the week included visits from Shirley and Lil (recently back from showing her work in Indonesia), a Vision Australia "Quality Living" telephone group (the first one), listening to talking books and the company of Natalya (my friend from Melbourne who has come to be Helen's carer for a week).
Mum has said several times of Natalya "I think she's lovely" which makes it much easier for me to go away for a bit - plus the fact that Natalya demonstrably is lovely and also that Helen has stopped deteriorating and in fact improved!
I am now in Hawaii of all places - for a week - visiting my friend Shannon and family who normally live in Seattle. Louis will come to Darwin to take over from Natalya on Monday and I will return to Australia and Darwin a week later.
Hence this blog will lapse for a week unless I learn anything important long distance.
Tuesday, February 22, 2011
Tuesday 22nd February 2011
Over the last 4 days or so and even possibly a little longer, Helen has been not herself. Gradually slower in movement and thought, more frequently and more profoundly confused and increasingly drowsy. Also has irritating conjunctivitis.
On Saturday night when I was still here on my own and on a bit of a peak of anxiety and distress following on the week just gone, I suddenly had a panic and called the after hours nurses back in to help me decide what to do. They thought (as is likely really) that maybe it is a urinary tract infection so on Sunday we sent off a sample and yesterday she started an empirical antibiotic plus some drops for her eyes. No improvement at all so far so we'll see how she goes.
A more sinister possibility would be something happening inside her brain such as reactivated metastases or new metastases but the palliative care team are aware of the situation and of her and will follow this up if she doesn't get better with the antibiotics. This is all unfortunate timing as my friend Natalya has just arrived from Melbourne (Sun night - having been delayed by the cyclone last Wednesday) to start learning how to look after Helen so I can go away for a break. Helen's current state means natalya hasn't got a very reliable baseline to start with in terms of how Helen is "normally" which certainly makes it more challenging. She has got phone numbers for some friends and family who know Helen better and can offer some comment - so don't be too surprised if you get a call.
Unless she really deteriorates I still plan to go away but not quite sure when (or where) - possibly Wednesday morning. Louis should arrive when Natalya leaves on the 28th to take over again so I don't have to come straight back and from the 2nd March we have planned for a private carer called Jo to start caring for Helen on Mondays, Wednesdays and Thursdays.
On Saturday night when I was still here on my own and on a bit of a peak of anxiety and distress following on the week just gone, I suddenly had a panic and called the after hours nurses back in to help me decide what to do. They thought (as is likely really) that maybe it is a urinary tract infection so on Sunday we sent off a sample and yesterday she started an empirical antibiotic plus some drops for her eyes. No improvement at all so far so we'll see how she goes.
A more sinister possibility would be something happening inside her brain such as reactivated metastases or new metastases but the palliative care team are aware of the situation and of her and will follow this up if she doesn't get better with the antibiotics. This is all unfortunate timing as my friend Natalya has just arrived from Melbourne (Sun night - having been delayed by the cyclone last Wednesday) to start learning how to look after Helen so I can go away for a break. Helen's current state means natalya hasn't got a very reliable baseline to start with in terms of how Helen is "normally" which certainly makes it more challenging. She has got phone numbers for some friends and family who know Helen better and can offer some comment - so don't be too surprised if you get a call.
Unless she really deteriorates I still plan to go away but not quite sure when (or where) - possibly Wednesday morning. Louis should arrive when Natalya leaves on the 28th to take over again so I don't have to come straight back and from the 2nd March we have planned for a private carer called Jo to start caring for Helen on Mondays, Wednesdays and Thursdays.
Thursday, February 17, 2011
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