Friday, 7 October 2016

7th October 

Today is peaceful for Mum but early on she seemed to be pulling at the sheets and I am sure she wanted to go to the toilet. In the end they did an ultrasound on her bladder and she had 800 mls. The decided to give her a catheter because she just won't let go. A lady to the end! This is all so undignified. The nursing staff took out her bottom teeth too because they kept falling out. Later mum wanted me to take her upper dentures out because they were too dry. I cleaned them but as they too are falling out they have stayed out now. More indignity.  Her breathing is very wet sounding because the swallow reflex has stopped.

Peter and Tim were here this morning so it was the whole family and we were glad for each other. The Doctor Padmina has been so kind and helpful and has suggested that the weakness she is having on her left side could be attributed to the cancer going to her brain or perhaps a small stroke. But she said Mum was adamant that she wanted no investigation or tests so they are only informed speculation. 

Yesterday afternoon my cousin Diane came to visit which was nice but we talked a

 lot about people's views on death and how someone was too scared to come because they were afraid of crying and upsetting Mum.  I said Mum wouldn't be upset and that at least crying expresses your concern about the other person. People don't know what to say, this I understand.we will all be crying soon enough.  I have certainly started to 'leak' at the edges. I shed more than a few tears yesterday when it was just Mum an I. The nurse who has come on tonight said Mum is on track so I hope it isn't too much longer for her. She can hear but mostly she sleeps.

The irrational feeling I am having is that I am not doing enough for her. It is out of my hands really and apart from telling her she is not alone and spraying her mouth to keep it moist, there is little anyone can do. I am reluctant to go home but I also want to leave and be amongst the living. I went out to have lunch in the garden today just because it is so heartbreaking and the sun and the blossom is so soothing. A crow came and perched right overhead. Is it a sign of something?


Thursday, 6 October 2016

6th October

Mum has had some frightening dreams that unsettled her the night before and even though she had been in the recliner when I arrived she was so uncomfortable. She is sick of being in bed and sick of being sick. Wednesday night Tracey came and we had some champagne. Mum clicked glasses on every drink

.  Later that evening David and Anne Marie came to visit and they also bought Champagne and glasses and she so enjoyed that. I went to dinner with them afterwards at Tenerife and had a lovely Italian dinner and gelato. It is such a contrast to Mum's current state and only serves to emphasise the loss of quality in her life. The doctors talked about how they were going to help her and she struggled to keep her eyes open and could only whisper even more quietly that usual but she understood. Thursday was a hard day particularly. She was so upset at her helplessness and just praying to have it over. She is not in pain physically but emotionally she is hating that it is taking so long. The indignity of the process is distressing. She feels like she is being punished by God. What do you say to that? I just say it is about giving her time to get ready. Seems a poor answer. My heart is breaking. It was so much better for Peter. A sudden end. 

She is being kept comfortable which really means sedated so she isn't distressed. Mum can hear us but it is an effort to keep her eyes open.

Tuesday, 4 October 2016

5 October

I went shopping for a couple of new nighties because Mum has lost so much weight that some are too big and gaping. I also looked for a couple of little bed jacket style tops. Fortunately I found two lightweight little cotton knit jackets from  a casual clothing shop and the nighties from Best and Less. I also bought myself a  nightie because I have only got a pair of summer pjs that I have had to recycle. It is pretty warm here so they dry most times before I need them though once or twice I have needed to sleep in them with a damp waist band.

While I was shopping I bought a Scrabble set for John and Tracey as we have all got the scrabble bug.  I have been quite diligent about getting my 10,000 steps in daily which has helped me feel fresher and fitter after all the sitting. 

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I am seeing the tranquil beauty in the river and glowing deep mauve of the Jacaranda trees as they blossom one by one along the river walk. It is soothing to observe natures cycle. The art along the river is interesting too.

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I took a ferry down river to New Farm park on the opposite side of the river, which as a child I remembered as huge and glorious with mature Jacarandas. It didn't seem so large anymore but still it was attractive and I returned to Kangaroo Point by walking along the river bank and the new fixed boardwalk all the way back and over the Story Bridge to Kangaroo Point and home.  The boardwalk used to be floating but got extensively damaged in the last big flood so now it is fixed and probably flood resistant. Just before the park I saw this gracious example of an old Queenslander.  What a beauty, like a frothy white wedding cake. I grew up in a similar home as this though not as beautiful. Perfect for the climate with extensive shady verandahs surrounding an inner core of cool darkish rooms. 

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Each night we have been Scrabbling and Tracey and John are improving fast.

The time seems to go so quickly and every night I am so tired.

Mum had a traumatic nose bleed on Thursday night and that seems to have instigated a dramatic decline.  She was supposed to use a face mask for oxygen to relieve her nose but she found it claustrophobic and kept fighting it until I asked for the prongs back. Then she was confused about which ones she should be having. She seemed to be more confused and tired all day. Sunday night she had a terrifying "dream" that she got out of bed and couldn't get any help and had to bang the table for the nurses. She wanted a doctor and was terrified but a nurse came and soothed her and got her back to bed. When I came in Monday she was upset and when I checked with the staff none of this had been true. She was delirious. Since then she has been more and more tired and sleepy. She is confused sometimes and then completely with it.

It is so hard to see her like this and she hates it too.  The little dog Kimba came yesterday and I chased them up to visit mum. It made her day even though she was so weak.

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The doctors came and she asked him if she was dying. He told her that she was progressing but not yet in the last stages.  We talked about her treatment. As she becomes sleepier they will reduce the oxygen and increase the morphine so she is not distressed.  I felt upset by the development but it is what we and Mum have all talked about before now. None of us want any false prolonging of the inevitable. The staff here are very kind and supportive and it heartens me that they never do anything without consulting mum too. It is painful to see her so debilitated and she is asking for it to be over soon.



1 st October steady as she goes

It seems surreal that I am now seeing a real change in Mum. Over the last two weeks we have gone from " mum could be here till Christmas " thinking to," could she pass in the next week"?. It is a roller coaster contributed to the ongoing but snail pace decline of my aunt Val who has had Alzheimer's for nearly 15 years. She hasn't spoken for 8 years and is also in her end days but when she looks to be taking her last breath, she has a good night and bounces back. All weekend we were expecting the call and it never came. For Tracey it is agonising because her Mum has been effectively gone for several years but the husk of her body 

remains. It is a curse and Val's condition has always caused so much pain for Mum. Val was her baby sister, her living doll!

I had a great week prior to this when I had dinner out with David and Anne Marie at a Chinese restaurant. I was so happy because I have been missing that style of food. I am now cooking a meal a week here and it is always Chinese. Tracey says she hasn't eaten as much rice or pork as she has since I started cooking! I even cooked with a head lamp one night because the rangehood light has blown and I couldn't see into the large pot I use because there is no Wok! Why didn't I think of that at Logaston when I was staying with Andy and Karen I wonder?

Later in the week I took in a movie " Bridget Jones's Baby" which was extremely amusing and caused me many belly laughs. It was great to laugh like that; such a release. The following evening it was the River Fire, a fireworks spectacle on the Brisbane river. Of course it was fun with lots of oohing and ahhing at the dramatic fireworks set to music by Prince and David Bowie. I danced and jiggled like a fourteen year old ( although 14 year olds are probably too cool for that in public).  



Tracey and John don't usually join  the crowds on the cliffs but did so for me this year. I loved the buzz of course after all the quiet hospital days. 

I began to think about returning to Melbourne for a visit, especially as Ziggy's birthday party was looming. In the end I just couldn't justify leaving knowing I would be wanting to get back as soon as possible anyway. 


Frustrations

3rd October

I have been having trouble with the blog so I am writing in notes first. I have lost so many attempts I wanted to stop doing it!

Sunday, 2 October 2016

17 September

17 September blog post

My day off was very refreshing. I decided to be a tourist in Brisbane and took the free City Hopper ferry service down the river to Southbank where I alighted at the Maritime museum.  It was delightful to be out in the spring sunshine amidst lively people and vibrant flowers after the quiet, subdued atmosphere of the hospital.



The place was full of families and couples enjoying the beach and water, playgrounds and cafes. 

I walked the length of Southbank ultimately arriving at the art gallery. I decided to lunch there and then explore the paintings. I found the earliest historical landscape of Brisbane interesting because it showed a perspective of where I am living in Kangaroo Point. It was so pastoral then and now it is tall apartments and the Story bridge. A stark contrast. From there I wandered across the bridge to the treasury Casino ( where John works in surveillance). It is a lovely building but the interior downstairs is full of garish poker machines and gaming tables surrounded by many Asian punters. It is smallish compared to Crown in Melbourne but at least you can see the street outside to get a sense of time! After that I wandered down the mall in search of a present for Ziggy and a bookshop to buy the book club books and also some oracle cards. 

Since being at Tracey's place I have been exploring the oracle cards. She has numerous sets so you can look at different ones to get a feel for those that resonate with you. Buying them outright is a bit of pot luck otherwise because you only get to see some pictures. The art on most is very attractive but I don't like the ones that seem 'dark'.  It is a feeling that you have to trust.  Tracey has given me a couple of reikis since I have been here and it has helped with the emotional aspect of being with Mum. I realised I was holding myself so tightly.  

I found a present but forgot to buy the KISS DVD for Ziggy. He is having a KISS themed birthday party! I didn't buy any oracle cards either because I didn't find ones that resonated or called me.

Then it was home on the ferry again and a walk along the river boardwalk to home. I felt peaceful and refreshed. My brain had relaxed too.

Everyday I pull a card to get a focus for the day. It is interesting that I am exploring this aspect again. I have angel cards at home which I use every now and again but here I am doing it daily and pondering the topics. It is a form of meditation or reflective thinking to see what is within the unconscious. 

I have focused on my logical brain for so long that I doubt my intuitive feelings sometimes. Once I was much more confident. I am trying to recover the 'faith' in my intuition by  practising this ritual.  It is enjoyable and enlightening.

Mum has been so good for a couple of days that I felt confounded. I have been here almost nonstop for two months now and she seemed so close to the end a couple of weeks ago but now seems to be stable. We pass the time comfortably playing scrabble and chatting or watching TV together or just reading quietly. I help with little things like the food, or getting out of bed, massaging her hands and feet, arranging visitors. The days pass quite quickly and the changes are barely noticeable. 

Yesterday she had to have a suppository for constipation which is a huge problem and she spent the day in fear of an uncontrolled explosion which she had once before to her utter horror. 

The effort of going backwards and forwards to the toilet until finally she succeeded really highlighted her weakness. It sapped all her energy and reminded me she really is failing still. It was awful to see her so distressed. Tracey arrived late in the day and found it very upsetting. The fact is none of us want to see this happening to Mum. It seems such a long process this dying and while I am grateful for the opportunity to be with Mum and so glad she is mentally okay it is still difficult emotionally.  I have been on the edge now for a long time expecting any day for a rapid change but instead it seems she has plateaued. She is so pleased I am here every day that I can't leave her now. I will take a day off every week to help me stay positive.

Friday, 16 September 2016


17 September blog post

My day off was very refreshing. I decided to be a tourist in Brisbane and took the free City Hopper ferry service down the river to Southbank where I alighted at the Maritime museum.  It was delightful to be out in the spring sunshine amidst lively people and vibrant flowers after the quiet, subdued atmosphere of the hospital. The place was full of families and couples enjoying the beach and water, playgrounds and cafes. 

I walked the length of Southbank ultimately arriving at the art gallery. I decided to lunch there and then explore the paintings. I found the earliest historical landscape of Brisbane interesting because it showed a perspective of where I am living in Kangaroo Point. It was so pastoral then and now it is tall apartments and the Story bridge. A stark contrast. From there I wandered across the bridge to the treasury Casino ( where John works in surveillance). It is a lovely building but the interior downstairs is full of garish poker machines and gaming tables surrounded by many Asian punters. It is smallish compared to Crown in Melbourne but at least you can see the street outside to get a sense of time! After that I wandered down the mall in search of a present for Ziggy and a bookshop to buy the book club books and also some oracle cards. 

Since being at Tracey's place I have been exploring the oracle cards. She has numerous sets so you can look at different ones to get a feel for those that resonate with you. Buying them outright is a bit of pot luck otherwise because you only get to see some pictures. The art on most is very attractive but I don't like the ones that seem 'dark'.  It is a feeling that you have to trust.  Tracey has given me a couple of reikis since I have been here and it has helped with the emotional aspect of being with Mum. I realised I was holding myself so tightly.  

I found a present but forgot to buy the KISS DVD for Ziggy. He is having a KISS themed birthday party! I didn't buy any oracle cards either because I didn't find ones that resonated or called me.

Then it was home on the ferry again and a walk along the river boardwalk to home. I felt peaceful and refreshed. My brain had relaxed too.

Everyday I pull a card to get a focus for the day. It is interesting that I am exploring this aspect again. I have angel cards at home which I use every now and again but here I am doing it daily and pondering the topics. It is a form of meditation or reflective thinking to see what is within the unconscious. 

I have focused on my logical brain for so long that I doubt my intuitive feelings sometimes. Once I was much more confident. I am trying to recover the 'faith' in my intuition by  practising this ritual.  It is enjoyable and enlightening.

Mum has been so good for a couple of days that I felt confounded. I have been here almost nonstop for two months now and she seemed so close to the end a couple of weeks ago but now seems to be stable. We pass the time comfortably playing scrabble and chatting or watching TV together or just reading quietly. I help with little things like the food, or getting out of bed, massaging her hands and feet, arranging visitors. The days pass quite quickly and the changes are barely noticeable. 

Yesterday she had to have a suppository for constipation which is a huge problem and she spent the day in fear of an uncontrolled explosion which she had once before to her utter horror. 

The effort of going backwards and forwards to the toilet until finally she succeeded really highlighted her weakness. It sapped all her energy and reminded me she really is failing still. It was awful to see her so distressed. Tracey arrived late in the day and found it very upsetting. The fact is none of us want to see this happening to Mum. It seems such a long process this dying and while I am grateful for the opportunity to be with Mum and so glad she is mentally okay it is still difficult emotionally.  I have been on the edge now for a long time expecting any day for a rapid change but instead it seems she has plateaued. She is so pleased I am here every day that I can't leave her now. I will take a day off every week to help me stay positive.