Saturday 30th January 2010

Helen eating!

Room 509 Mater Rehab

View from Room 509

Yesterday I saw Helen in the morning but then spent the rest of the day organising and reorganising her flat at Dorchester St in preparation for discharge. Doug and I have pretty much moved every piece of furniture around but I think the new arrangement is better for now. We had to fit in a new hospital commode chair, a wheely walker, a mattress support thingy and another chair with arms to push up from and a cushioned seat. Plus make it possible to use the wheely walker to go to the bathroom .

Meanwhile I gather Helen had a very social day with lots of lovely visitors - she doesn't really seem to be finding this wearing at present so I would still say it's the best time to see her that we've had since she got sick - not manic, not depressed, not in pain, not breathless, no infections. Having said that she still talks through clenched teeth all the time and forgets odd things so you have to allow she's not the same as she used to be...also David (her brother) who just arrived and hadn't seen her since Darwin said he arrived when she was asleep and felt unsure it was her so her general appearance has changed a lot!

Helen likes to lie back with her eyes closed when there is nothing going on so if you do go to visit and she looks asleep it's worth going in and saying a quiet hello. If she's really asleep she'll stay asleep but if she's just resting her eyes she'd be sorry to miss you.

Douglas entertaining Helen in Room 509

Thursday 28th January 2010

Lots of news in the last few days. The best one is that Helen was delightful, cheerful, oriented company today! Her sore eye has settled down. The upshot of the family meeting is that she will be discharged back to the flat at Dorelle (Dorchester St South Brisbane) on Monday and we will see how it goes. The OT, Discharge Planner and Palliative Care Nurse and I all met on Wednesday and then each of them also caught up with Helen independently and then she went off for another chemo treatment. The meeting was ok - the "system" for accessing higher care outside of hospital is typically ridiculous and I felt upset and frustrated by that but it's no worse for us than everyone else. Their assessment is that she needs pretty constant supervision and support and prompting to eat and drink and to do things in general - much more intensive than before but do-able I think. Over the next week after discharge David and Greig will be around and Louis will be back and Doug and I will be here so we'll make a start and see how it goes.

Just for interest for those of you who haven't gone through the process of accessing Aged Care in Australia: first we have to complete a Centrelink Income and Assets form ( more like a book) which I have been trying to do for Mum since Darwin and keep giving up on! At the same time you need ACAT assessment. We are going to apply for this to happen "urgently" in the community - in practice urgent equals at least a 3 week wait. Then (and only then i.e. once both assessment and CAT are completed) we have to interview with and apply to a minimum of 5 nursing homes who will then wait list us as they assess our need and priority....! The only other approach is to go for a fully privately funded bed for which we need $350 000 up front and then something like $80 a day from then on at a minimum. Plus they told me the private homes tend to be awful!

The only silver lining in the process is that the assessment is federally funded and counts nationally so we can still look at homes in Darwin, Natimuk or Melbourne if we want to and she is fit to travel. I do tend to think that aged care is better in rural and regional areas - not so much pressure on resources and often very skilled and caring staff.

Anyway hopefully we will manage at home again for a bit and the way things go with Helen and us I imagine things will change a lot over the next 3 weeks so everything will be different...

Tuesday 26th January 2010

Adventures since last seen...somehow Helen has scratched or otherwise injured her R eye and developed a corneal ulcer. When I arrived this morning she was sitting up in her chair enthusiastically eating breakfast and informed me that this was a direct result of being able to see "out of my eye again"! Her memory is that she lay for 2 whole days with both eyes closed to protect against the pain and hadn't eaten a meal for days - I think that was actually only from Sunday night through Monday morning (still quite long enough to be in pain and unable to see clearly). The nurses tell me that even Mon night she was not so uncomfortable. Hopefully the eye will heal quickly with supportive care.
She is in good spirits today and has had a few nice visitors and enjoyed them although the memory side of things continues erratic.
Unfortunately she is only eating with pretty direct encouragement - prompting and spoon feeding although she continues with her "protein enriched" drinks throughout the day.
Louis is going to go away for a week from tonight so I'll be the main person for that time.

Helen's Mobile Phone

Helen no longer uses her mobile so Louis has had it disconnected. This will have been apparent to those who tried to phone it but not if you have been sending her texts. Visits are fine now - room 509, Annerly Road campus of Mater Private or you can call the nurses station there. Mail is good and flowers are OK again.

Monday 24th January 2010

This photo is from when we toured the rehab ward 2 weeks ago.
I'm back in Brisbane now.
Helen is still in the rehab ward at present - she seems in much better spirits than she was when I left and is able to volunteer conversation and to feel enthusiastic and positive. The strange and dramatic change is to her memory - she now seems to have very limited short term memory - particularly for things that have just happened. She doesn't seem distressed by this though. Louis observes she is taking a lot of pleasure in visitors at the moment and I noticed this too when she spoke about the people she had seen recently. SHe was really happy to see me and Doug when we arrived and it wasn't really like that just before I left.
The hospital are keen to either discharge her to home or to an aged care facility as she is reaching the end of the time they will allow for an acute stay. There is a family meeting planned with nures and OT for Wednesday so we'll see how that goes. One option is trialling her back in her flat here with more supports - both official and family and see how it goes. Any Brisbane people contemplating a visit - the next few days are a good time.

Fri 22 Jan 2010

Mum's friend Lyn has been visiting from Sydney and Louis says that has gone really well. I am still in NSW so my Helen updates come via Louis. From what he says she continues to vary a lot day to day and even through the day in terms of her ability to think and to communicate. She is trying to keep eating and exercising but finds neither very appealing (in fact she never really has if you look at her life long patterns!)

At this stage still in the rehab ward at Mater Private in Brisbane. I'll be back in Brisbane Sunday night I think or maybe Monday morning. Louis tells me we have a family meeting booked with the palliative care team on Wednesday about discharge options but as I haven't seen Mum for 2 weeks I can't really picture what those are at present.

post from Robin regarding his and Sally's recent visit

Hello All,

Sally and I visited Helen from Thursday 14/1 to Sunday 17/1. Helen is in the Mater Private Rehab hospital and seems to be getting as good care as we would hope for. The staff were friendly and helpful. We stayed in the Dorelle flats under Louis' care - very comfortable and convenient.

We generally visited Helen morning and afternoon and spent time talking or just sitting/reading while she slept. We had a couple of outings with wheel-chair. Sally gave a bit more useful care than the average visitor and also following Louis' example, helped Helen through her somewhat negative attitude to eating. We had some good conversation at times when Helen seemed very much herself in voice and smile. Then at times she would struggle with finding words to say something, get out a few disconnected words with effort, then shake her head, smile, relax and say "it doesn't matter" - relief. I read out some excerpts from Helen's book by William McInnes "A man's got to have a hobby" and that was fun.

She does some exercise (she realises she should) - walking with a frame, up and down the corridor. She tires easily. Eating and showering are an effort.

Overall it seems to me she is gradually slipping away. She has some minor irritations at times but is not in pain and the care is good. What more could we expect?

I am very glad to have had this visit.

Love, Robin

Friday 15 January 2010

Louis says Helen was much improved yesterday - seemed to be able to speak and think much more clearly. He thinks she had been getting dehydrated - only having 400ml Fortisip to drink and no water.

Thurs 14 January

Louis says today Helen is a little better having deteriorated quite a bit while I have been away. Apparently she had chemo yesterday and tolerated this well. Had been having a lot of trouble with memory and word finding and was really not herself but has improved a little. Sally and Robin arrived today.

Monday 11th January

Posting from rural NSW:
Louis tells me Mum moved today to the Rehab area of the Mater Private. This means she is now at the Mater Private Annerly Rd Campus, 41 Annerly Rd South Brisbane, Level 5, Room 509. Nurses Station phone number is (07) 3163 1796.
She is apparently very shaky today and having trouble putting words together - currently resting after the move.
I hope she is in a single room and will be allowed to have flowers again.
Family visit of Robin and Sally planned for 15th and 16th.

Saturday 9th January 2010

In good form. Still spiking fevers with no obvious cause but otherwise - so much more positive in her outlook and speech. Thinking also seems better. Mobility better - able to go for a walk around the ward with Doug and me just holding her hands for support. Has started keeping a diary for 2010 - mainly for medical appointments but still...

Thursday 7 January 2010

Neutropaenic.

Fevers. Negative blood cultures. Slightly lower sodium - fluid restriction decreased back to 750ml (which I think is what she was having anyway even when given the allowance of 1000ml).

Had a CXR yesterday. Has a sore ear. Otherwise in good spirits. Slightly physically more frail and off balance than the last 5 days or so - maybe the fevers are to blame. Louis, Douglas, Helen and I went on a tour of the Potter Centre - the Rehab Unit of the Mater Private - seems ok.

I spoke to Dr G (Mum's Darwin GP) about similar/high care options in Darwin. She suggested looking at Tiwi Gardens - apparently pretty new and quite nice.

Once again I urge those from interstate who want to see Helen to do it soon - a) things can change fast and b) we may move back to Darwin....

Wednesday 6 January 2010

We had an impromptu excursion to the podiatrist in West End - the hospital one was on leave and Mum's feet were getting sore. Interestingly not only are the nurses "not allowed" to cut nails in hospital, the podiatrist said he is not allowed to cut fingernails! Despite having every right to deal with toes which I would think are far more tricky. We then came back to Mum's flat at Dorchester St for an hour or so - left in pristine condition by Kaye and hung out for a while. Mum negotiated using the flat's toilet quite well and also the stairs in and out of the side entrance - with a fair bit of support and supervision. I think the suggestion from the OT as of yesterday is they try moving her to the Potter Centre - the Mater's Rehab Unit for a bit and then aim for home discharge with more supports.

I am going to go and do a remote locum in NSW for a fortnight so will leave Brisbane on Saturday and not return until ~ the 24th. In the meantime Louis will be here and a brief visit is planned from Sally and Robin (Mum's brother and sister). This does mean there won't be much blog action for a while but if she is moved to a different bed or discharged to home I will post this so people know where to look for her. If you are a Brisbane based person I urge you to spend some time with her - she is up for it now and the mental stimulation will be good. Supported short walks are also good. She is quite motivated to try to improve her strength and mobility. Overall her mental state is quite a bit improved and we have explicit instructions from the psychiatrist to challenge negative thoughts and false beliefs as soon as they come up.

Brisbane Botanical Gardens

Monday 4th January 2010

Well I'm back after a significant hiatus. In my absence Louis managed fabulously. Helen remains in the Mater hospital in bed 889. She finally had the much discussed blood transfusion while I was gone and Louis said he noticed a big improvement after this. Helen also acknowledges that she felt significantly better the morning after although the experience of actually having the blood was marked by gore and delay with a kinked line and spillage all over the bed. In having had a break I think she seems better too - able to smile and laugh sometimes and to make positive comments, able to acknowledge others' more positive versions of reality when she is challenged on a piece of delusional negative thinking. She is able to read. She can walk cautiously and slowly with a walking stick (easier to manage than a wheely-walker) and self transfer to the toilet given appropriate rails and supports. She is still troubled by the "clenched teeth" and a general feeling of being clenched and locked up. I don't know what this is but suspect maybe it is another paraneoplastic thing. It seems tiring. Benzodiazepines work a bit.

One of the best things to happen while I was away was Mum's friend Kaye came to visit from Darwin. This has been a great success and the particularly fabulous bit of that is that Mum was really anxious about her arrival. She worried about all sorts of things - where would Kaye sleep?, what would she do in Brisbane? - she doesn't know it and has no friends here, she would judge Mum for not trying harder to get better, she would judge Mum for still having chemo...a whole bunch of things which were irrational depressive/anxious thoughts. As it's turned out they've had heaps of fun together and have done some interesting/adventurous things such as seeing Bright Star with Louis (Jane Campion movie on Keats) which Helen found terribly soppy, walking in the botanical gardens with Louis and Doug and me, reading poetry together (including the aforementioned Keats) and just generally spending some good time together.