9 October

Edna Peter and I May2016 at the Deppeler reunion.

9 th October 

I spent all day with Mum yesterday with only brief visits from Tracey and John. I felt that Saturday would be the day but at 5:00 pm she seemed to be just in the same breathing pattern and so I decided to leave.  Mary the charge nurse on duty with 16 years experience, related a story about the song 'You are my Sunshine' being one that had helped two patients release their spirits and she suggested I try it too. I downloaded a Bing Crosby version and played it. I felt a bit guilty but I hoped it would help her. I was tired and despondent so l left and rang Peter my brother to check he was okay as I hadn't heard from him all day. He also was very low. We had just sat down to dinner at 6:30 when Peter rang to say Mum had just died. We abandoned our dinner and raced across to the hospital. John andTracey were amazed at my speed! I was so focused on getting to the hospital I didn't really notice them. Mum was very peaceful but I asked Mary to put her dentures back in because she hated to be seen without them and she just didn't look like Mum without them. Peter arrived shortly after. For a moment I just felt like a little girl again.  It passed and we talked about how lucky we were to have Edna as our Mother. Her values are deeply imbedded in us all and particularly about love being the most important aspect of life. We sat with her for awhile and then gathered her things and removed her jewellery. We are all relieved that in the end she didn't linger very long. Her desire to control her destiny was achieved. In the end she had the quality of life she wanted almost to the end with only the last few weeks being in a state of helplessness. She was dignified and gracious always. The staff on the ward loved her for her smile and her appreciation of their kindness. They were wonderful in the care they gave Mum. Always kind and respectful.

I am sad that I have lost not only my mother but my best friend. 

Afterwards there is always a flurry of activity letting people know. I am a bit numb and functioning on automatic. 

It is doubly hard for Tracey because her Mother is also hovering at deaths door and she will be losing the two most important women in her life in the same weekend. Her mother is interstate so her dedication to helping mum and I  has been even more generous. 

8th October 

Last night I came home feeling drained. Mum seems to have just shrunk into this little lady.  Tracey came by to see mum and after some prayers and loving words we left. I bought a bottle of champagne on the way home and we were well into our second glass when John arrived home. He had booked a table at the Summer house restaurant which is abuzz on Fridays and has live music. It was a lovely change. I felt more settled and then we stopped by the hospital on the way home because the nurse had said things could change quite quickly. Mum was sleeping peacefully but then I slept fitfully on edge about receiving a call in the night. 

At 3am Tracey woke and soon after received a text from her sister to say their mother Val had deteriorated and this looked like her final hours. Having both her mother and her godmother pass at the same time is really intense. We are all on edge waiting. Mum always said when she died she would take Val with her but now it might be the opposite way. Mum's breathing is changing slightly. I am talking with her every now and again, saying prayers, playing soothing music, touching her to let her know I am here.  Her eyes flutter open when she is moved from side to side but otherwise there is no recognition. She just seems to be diminishing every time I look at her.

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?

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.

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. 

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.

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. 

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.

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!