Friday, November 26, 2010

Margaret's Farewell

This morning at about 7.00am Helen and I scattered Margaret's ashes near the Noosa River.


Margaret rests just to the right of this picture next to the river bank.  She specifically wanted to be near this stretch of the river.

This was for Helen and I a closure after a few gut wrenching weeks.  I shall return to last Monday week the 15th November.

After leaving Margaret we returned home to Louis and just sat and talked for a while.  We had a glass of wine and at about 7.00pm there was somebody at our front door.  It was A, Margaret's GP.  He had just heard of Margaret's death and had dropped in to give us his condolences as a friend.   I think that he was more upset than us as we had had a couple of hours to compose ourselves.  He had a small glass of wine to toast her farewell and apologised for not being there at her death and the mix up earlier in the day.

On Tuesday we visited the Funeral Parlour to make arrangements for Margaret's cremation.  Helen had two pieces of music which she wanted played.  We both agreed that a Celebrant should lead the Farewell Ceremony and set the time of the cremation at 10.00am on Monday 22nd November.  We went on to the Noosa Nursing Centre where we collected a few personal items.  We donated her clothes, wheelchair and wheely walker to the centre as the are many elderly people there with no relatives and little money.  We also said that we would donate any suitable clothes which Margaret had back at home.

On Wednesday we met the Celebrant who sat and talked about Margaret for an hour while we worked out the format of the ceremony.  Initially Margaret had told me that she only wanted a private ceremony with Helen, Louis and I present but in the last few weeks she said that she would like a few friends as well.

Helen had visited  the Chapel Of Remembrance on Wednesday morning to say  Goodbye to Margaret.  I preferred to remember her as she was in earlier times.

Over the next few days I sorted out Margaret's affairs and as we had put all our assets in joint names they don't have to go to probate.  Her age pension stopped immediately and her private hospital insurance was also stopped.  I have to wait for the official death certificate to change our bank accounts, house ownership and car registration.

Throughout the week Helen sorted out Margaret's things.  She threw a lot of older clothes away,  filled six garbage bags of serviceable clothes for the Nursing Centre and four boxes of fancy clothes, shoes and bric-a-brac for the local Op Shop.  This has saved me a distressing job.

Monday came and we were given a lift to the Chapel of Remembrance by our neighbour.   There were 21 friends to farewell Margaret and we had a quiet ceremony lead by Tim the celebrant.  I had Tim read out my memories but Helen made a great job of reading her personal thoughts.

The opening music was one of Margaret's favourites, Memories, from Cats.  The next was Helen's choice, God Only Knows, by the Beach Boys and I asked for the closing music to be, See You Later Alligator, bay Bill Haley and the Comets.

I chose two photos:









My Eulogy reads:


Thank you for coming to Margaret's farewell.

It was Margaret's specific wish that she had a low key cremation but Helen and I decided that a few close friends would be welcome.

Helen has chosen the music and I have selected two of my favourite photos.


The first is a publicity shot when Margaret was an aspiring Actress in her late thirties.

The latter shows Margaret at her best about two years ago just after becoming reliant on a wheelchair for transportation but obviously still enjoying life.

Where did it all begin?

Back in 1936 Margaret was born as the third and final child to Tom and Phyllis Commerford in Romford, Essex back in the UK. Tom worked at the Ford Factory in Dagenham as a spray painter and Phyllis worked as a shop assistant. She had a brother Vincent and a sister Veronica.

The family moved to Sunbury on Thames on the other side of London just before the 1939 to 1945 war and Tom commuted to and from Ford's each day. As a post depression family you didn't give up a good job.

Soon after war broke out Tom gave up his, by now, reserved occupation and joined the army as a Tank Driver in the Royal Armoured Corps. There was a family tradition to follow. His father was Killed in Action towards the end of the 1914 to 1918 war.

Tom's younger brothers John and Bobby died in Hong Kong and Burma fighting the Japanese. His other brother broke his back as a Paratrooper but made a full recovery.

Tom fought in North Africa, Sicily and Normandy and was killed in action in France on the 19th of August 1944.

This fighting spirit and courage was passed down to Margaret who defied the odds and survived many critical illness until her death last Monday.

I first met Margaret on the 6th of December 1956 as a result of Rock and Roll. Now as I write these notes I see that perhaps an appropriate farewell song would be “See You Later Alligator”.

On December 6th 1956 my stepbrother, Conrad, persuaded me to go to the local Youth Group's Rock and Roll dance because he was very interested in a local girl called Marlene.  The only problem was that she had a friend who was getting in the way as they all walked home together.

My job was to keep the friend away from them so Conrad could try his luck.  The friend was Margaret and the outcome was that Marlene married the local butcher and I married Margaret.  Later Conrad met Margaret's close friend from work who was called Georgina. Con and Georgina married a year after us and are still happily married after over fifty years.

My brother Alan was my Best man and met Margaret's sister, Veronica, who was Margaret's Maid of Honour at our wedding. He married her. eighteen months later.

Alan and Veronica were married for forty nine years before Veronica died last year and they have four great kids and seven grand kids. 

We celebrated our fifty second anniversary this September. 

Blame it all on Rock and Roll!!

We married in September 1958 looking forward to a big family but Margaret miscarried a couple of times and this was not to be.

In June 1960 I accepted a position at my employer's factory near Adelaide in South Australia for a two year contract but we began to make arrangements to adopt a baby and stayed on.

In February 1963 Helen came into our life. Like most families we had our problems but the only good thing to come out of Margaret's last few weeks is that she showed how much she loved Helen and Helen's love for her Mum is obvious.

Margaret spent the next few years as a full time Mum.

In 1973 she reactivated her interest in acting and from then until 1986 she acted in and directed many plays in the Adelaide Amateur scene. She also appeared professionally in many adverts and made a few film appearances in bit parts.

In 1986, in spite of having to leave school at fifteen and having no qualifications except in typing and shorthand she sat the Adult Entrance Examination and gained a place at the University of South Australia, Magill Campus. Here she was awarded an Arts Diploma specialising in drama.

She was now able to set up a Children's Drama School called “The Young Performers Drama Workshops” She ran this until 1996 when the first of her final illnesses, Crohn's Disease, returned after 34 years. This coupled with an Arthritic Spine meant that she had to close the workshop.

We had brought land in Tewantin so we had a house built there and I took early retirement. We moved in in 1998.

We bought a small caravan and for the next year explored South East Queensland with out beautiful Standard Poodle, Pierre.

I was cycling and camping a lot as well and one weekend got hit by a car while walking back to my camp site in Landsborough. My left leg was smashed and it would be three years before I could walk with out crutches which put an end to the caravanning. During this time Margaret did everything in spite of failing health.

The treatment for Crohns was large and continuous doses of steroids which kept her alive and able to cope with me. Unfortunately they have disastrous side effects including destroying the immune system.

Just before Christmas 2003, and incidentally just after I was given the all clear on my leg, Margaret developed an infection which we were told would need hospital treatment. Here she suffered the first of several serious bouts of congestive heart failure brought on by pulmonary oedema.

Since then she had many critical illnesses which I was told were most likely to be terminal. I think that Helen has earned frequent flyer status in coming up from Adelaide to make her last farewells.

I told you that Margaret had her families fighting spirit genes.

Gradually her adrenal glands failed and she required more steroids just to live.

In 2006 I became her full time carer which I relinquished in August this year when Margaret had to go into the Noosa Nursing Centre.

She became weaker and weaker and we received much needed assistance from Blue Care. Her main RN, Dawn, was known by Margaret as “that woman” as she hated being reliant on outside help but before she had to go into Residential Care she told “that woman” that she loved having her come to look after her. Thanks Blue Care who gave Margaret another eighteen months at home.

Last year her kidneys began to fail, in April this year she had an Heart Attack and finally in June she had a fall and broke her left arm at the shoulder.

In early August she was placed in a Respite Care bed in the Noosa Nursing Centre and we were told that she had about six weeks to live. She made it to fourteen as she fought to survive.

We set goals for her to make. Little Louis birthday on the 19th of September was held at the Nursing Centre with several staff enjoying the nibbles and envying us the Champagne.

On the 26th of September we took her out to lunch for her birthday. We actually caught the bus from the Centre to Civic as Margaret was too weak to get into my little car. The drivers were terrific. Margaret was a little concerned as the bus rocked and rolled but said that she enjoyed it as much as she did in the 1950s. This was the last time she went out.

The last goal as it turned out was my birthday on the 2nd. By now Margaret was on full time oxygen to combat pulmonary oedema and we had a little celebration in her room.

We set the next goal as the 6th of December, the anniversary of our first meeting but it was not to be.

Margaret died at 5.05 pm on November 15th. Helen and I were both with her and she was receiving dedicated and loving care from her carers and the RNs at the Nursing Centre.


Margaret and I had long and sometimes stormy relationship but in the end it was a loving one.


I shall miss you Margaret.

See You Later Alligator

Helen's Eulogy reads:

Thank you all for attending today to wish Margaret good bye and showing your support, it means a lot to me.

I would like to talk briefly about Margaret"s' final weeks, during this time it showed that Mum was suffering from a loss of her home environment and the choice to live her life with choice.
I tried to remove as much of that as possible along with the day to day evidence of this while working out a perfect strategy for all of us to cope.
That still at times remains unknown.
Other than trying to relieve the growing symptoms of her personnel misery which she kept to herself but could be seen in her eyes.

We latched on to the ideas of behaviours and routine to normalise her life as much as possible such as sharing meals, celebrating special events like Louis birthday just to mention one. Going to the shops we use as a tool to make things easier for Mum to minimise her loneliness, yet it seemed like a trade off.

I do feel it did help the exacerbating internal conflict for her. While on 24 hour oxygen Mum still wished to go to the shops. We could tell that inside she fumed with frustration about missing out on the fun times.

A smothering feeling towards a sense of obligation to the cause of limiting her loss of self, and the life she loved. For Mums benefit not mine.
The simple truth is it was not possible to get Mum out by this stage, either way it was confronting causing anger, fear, grief and confusion to find a way.
Mum, Dad and I felt it, this lead to a metamorphose of a complex collection of emotions starting with love for her, leading into bitterness of the situation along with loss, pity, and resentment, rage and guilt.

On visiting Mum she would softly say "Do I look nice?" "I want to look pretty when Dad comes."
We would then put make up on her, brush her hair and change her top, as an unkempt appearance she found distressing.

I slept in the armchair beside her bed which was lowered to be the same height. At times she would wake feeling unsure and lonely. Being there helped and she would hold my hand and go back to sleep knowing she was not alone.

Symbolically it marked the beginning of a reconnection with my Mother.
I always loved her but wasn't sure she knew how much. Doing her nails, hair and sharing meals with her helped her pass the time, along with talking about the things we did together when I was a child.

I can only admire her strength, courage, love and devotion. she was trapped by discomfort, sometimes feeling isolated and vulnerable knowing her situation was beyond all our limitations.
I have many fond memories of this time with Mum. One is her blowing me a kiss as I would leave and saying " I love you."

To be here during this time for mum after so long without my parents just around the corner. I felt I was finally home again.

Mum had many humorous moments one would be shopping and pointing to different areas of the shop grabbing things off the shelf and saying " I want that!"
Teddy who is attending today is a product of one of those shopping trips.
There was a stage Teddy went everywhere and before Mum would go to sleep she would punch him in the stomach as that helped him to have a good night sleep. I'm glad he gave her so much company.

Mum you kept my feet on the ground when my head was in the clouds. You encouraged me with steps I took, held my hand and comforted me when I felt alone. Proud of my achievements big or small. Taught me how to listen and have confidence to believe in myself. When I made mistakes were understanding.
Patient when I needed time. Guided me when I needed direction. Comforted me when I doubted myself. Gave me a hug when I needed one. Gave me advice. Kept me calm. Showed me determination and showed me how to have generosity to my fellow mankind.
Mum you helped make me be the person I am today.

Thank you for being my MUM.

I will always love you.

To everyone here thank you for being my Mums' friend.
Whether you are in theatre or not we have all heard this

All the worlds a stage and all the men and women merely players.

My sister Sue sent the following Memories;

Margaret, my sister –in –law, my brother’s wife. Eighteen years my senior she was kind to me as a child, and I remember her as a pretty, slim young woman. Years in between visits, as you were in Australia, and family visits were less often in those days, and air fares prohibitive. But she was always interested in me when we had contact. In more recent years a trio of notable visits by Margaret to the UK.

We spent some good times together. She came up to Hull , and I’d arranged a week-end in the Yorkshire Dales to stay in Herriot country – which she loved. It’s my favourite part of England and Margaret was a big fan too. We had a great time, visiting the Herriot villages and pubs, a walk to a waterfall and a great B and B. It was January, and snowy. As we arrived and got out of the car to look at the view the wind whipped around her and she shivered. ‘I’d forgotten it could be this cold’ she said. It was a pleasure to entertain her, she was so appreciative of everything.

I ended up, by mistake, driving on ice in my mini-metro, on high ground. I was terrified – but she remained calm saying ‘Brian and I drove on ice in Tasmania.’

On her next visit she came to see me where I was living in Hathersage, with my new baby, Max who was only two months old.  I have always been grateful for that visit. I was living in a small cottage, on the outskirts of a village, on my own as a first time new mother – it was lovely that she came. Even though she had to stay in a B and B in the village as there was no room at my tiny cottage, she still came. Again – she loved the area- and accepted the limitations the new baby imposed. We had another really nice time. She was supportive in a straightforward way. I was slightly embarrassed breast feeding in public – she made it clear I didn’t need to be – that helped. She had useful advice on ‘getting the baby to sleep’. I remain grateful to her for that – it worked, and she set me on a good path with him. Another good trip.

On her last visit to the UK she came to see me in Birmingham, by which time Max was about three I think. Again –she was good company, and enjoyed the local Botanical gardens we visited.

It’s nice to be appreciated for anything you do for or with someone. I seem to have got that in lashings from Margaret. She was flexible, broad minded and interested in things and people. She was hospitable and welcoming when I visited her and Brian in Adelaide in 1990 and earlier this year welcomed myself and Kirsten when we stayed for a couple of weeks. I am grateful that we were able to share evenings with Margaret during that visit and even a couple of meals out even though she was not very well.

So – thank-you Margaret for being my sister –in- law.  For being accepting,  approachable and appreciative.  I have always thought you had an interesting life. I know you were loved and cared by Brian and Helen. I know you are missed. I’m so glad I had the privilege of knowing you and spending time with you.

With love  In memoriam.  Sue Kirvan 

We returned to our house where we toasted Margaret's life in Queen Adelaide Champagne.

Today we ended this chapter of our lives and this blog is complete.

I shal be blogging on:

http://briedw02.blogspot.com/

from now on.





Saturday, November 20, 2010

Margaret's Last Few Days

Last Saturday (13th November) Helen phoned at 7.30am to say that Margaret was very weak and that she was coming home on the 8.00am bus.  I said that I would drive in asap to make sure that Margaret was not left alone.  She had spent all night clinging on to Helen's hand.  I think that Helen was awake most of the night and when Margaret was conscious talked to her to make sure that Margaret knew that somebody was there to care for her.

I arrived just after Helen's bus left.  She was going to have a shower and drop back later in the morning.

I found Margaret barely able to talk but she was pleased to see me and gave me a smile.  She hadn't eaten any breakfast and actually didn't eat again before she died.  Helen had devised a way of giving her water from a squeeze bottle and we gave her water and apple juice through out the day.

Margaret was very weak and the carers gave her a high care wash,  dressed her in a clean clothes and put her in her recliner chair. I sat next to her holding holding her hand and talked to her while she was awake.  By now she could only speak in a hoarse whisper.  Helen returned at 11.30am intending to have lunch with Margaret while I went home to get Louis.

As I said above Margaret didn't eat any lunch but was happy to see Louis and fed some of her meat to him.  Actually Helen placed the meat in her hand and she let it rest beside her and Louis took it from her.  Later he sat next to her and she rested her hand on his head.  It was her last contact with Louis.

I took him home after an hour.  Helen came home for a meal about 5.00pm and I ran her back about 6.30pm as she intended to spend the night with Margaret.  I was feeling very tired and Helen must have been exhausted.   I went to bed early and was awakened about 1.30am by the telephone.  It was Helen.  The night time RN had asked her to phone me and get me in.  Margaret had had some type of attack and was gravely ill.  She was gasping for air and required regular shots of morphine to help he breath.

I got a taxi in as I had had a couple of glasses of wine and don't like driving at night anyway.  I got in at 2.15am and Margaret was more settled.  She now could barely speak at all as she needed all her strength to breath.  She was communicating by lifting her finger to attract out attention and then we would determine  what she wanted by asking her questions and she would raise her finger when we hit on the correct question.

I left at 6.30am and walked the 4km home to get showered and to let Louis in the garden as he was in for a long day on his own.  I returned at about 8.30am to allow Helen to go home by bus.  By now Margaret was too weak to get up and was given a bed wash, a clean nightie and put back to bed.

Helen had dragged the recliner chair next to the bed and when I returned was lying in it fast asleep  holding Margaret"s hand.  I stopped to take a photo but she woke up and smiled at me.


Margaret's Last Photo

Helen went home for a shower and  I sat next to Margaret and held her hand.  She was concerned that Helen wasn't coming back an said to me, "Helen."  in a barely audible whisper.  I assured her that Helen would be back and said, "You do know Helen loves you don't you?"  She smiled and nodded her head.  I then asked, "You love her too, don't you?"  and again she smiled and nodded yes!!  This was the only good thing to happen all day.  We sat and I talked about Louis and asked if I should bring him in and she shook her head.  She really was too weak to pat him.

The rest of Sunday we shared the duties.  We both had lunch and an evening snack at the nursing centre before I went home to Louis.  Helen settled in the for the night.

At 6.00am Margaret's breathing became very painful to watch she was gasping for air and making terrible gurgling noises.  The RN faxed Margaret's GP to get permission for more morphine.

I got in at 7.00am and I don't think that Margaret realised that was there.  By now she hadn't drunk anything for many hours and was too weak even to respond to the squeeze bottle.  The carers used swabs to moisten her lips but couldn't get her to open her mouth.

Helen went home for a shower and returned after two hours.  Margaret was slipping in and out of consciousness.  She has spasms when she appeared to be choking and began to cough up mucus and I was afraid that Helen would return too late but she was back in time.  While Helen was away I talked to Margaret about the happy times  we had had and even the downright silly when she had to roller skate across a stage as she played a modern female detective!! I don't know if it helped as I got no response.  We also moved her bed so that we could sit either side of her.

She suffered all morning and both the RN and I phoned the GP for a response to the fax. but couldn't get passed the receptionist.  In the end at 1.00pm the Nursing Centre's Director of Nursing examined Margaret then he  phoned the surgery and insisted that the GP respond to the fax.

Margaret's GP arrived 10 minutes later in a terrible state as he had not seen the fax until the DON's phone call.  He examined Margaret prescribed a continuous feed syringe to deliver additional morphine and a sedative to relax her.  He said that she had about 12 hours to live.  He apologised to Helen and me about the mix up with the fax and was very upset. He had promised Margaret, who knew that she was dying, that she would not suffer and he had let her down .  He believed that she was too weak to be aware of her suffering but would have preferred to provide the extra medication much earlier.

The next three hours  saw Margaret a little more relaxed and we sat next to her and held her hands.  At about 4.00pm I was going to go home to feed Louis when Margaret had another terrible breathing spasm and was coughing up more mucus.  The RN tried to use a suction device to clear Margaret's lungs but was unsuccessful so she phoned the GP to get approval to inject a dispersant which was given immediately along with instructions to inject more morphine.

At 5.00pm the RN came in to administer the dispersant and as she rolled Margaret over to give her the injection Margaret gave a big twitch and stopped breathing.. The RN left the room while Helen and I held Margaret's hands.

At 5.05pm the RN returned with DON who declared her dead.  Helen started to straighten Margaret's head and make her look comfortable and the DON assisted her.  Together they laid her straight and tidied her clothes.  The RN and DON then left us alone with her as we said goodbye.

We left about 5.40pm and the Nursing Centre arranged for her body to be collected by the Funeral Director who would contact us tomorrow.

I then realised that I have one more chapter in Caring for Margaret to complete.  That is making arrangements for her cremation and scattering of her ashes in accordance with her wishes.

I will close this blog next Saturday

Monday, November 15, 2010

Margaret Has Died

Margaret died at 5.05 pm on 15 November 2010 in the Noosa Nursing Centre.

Helen and I were with her.

It was a traumatic day as Margaret had major respiratory  problems which I will cover later in final post on Caring For Margaret.

Friday, November 12, 2010

Margaret - an Update

Since last Saturday when I last posted Margaret has been getting steadily weaker.  We have visited every day with Helen spending many hours with Margaret each day.  I find I can only take three hours.

Margaret is now unable to speak except in a whisper.  She has difficulty drinking even using a straw and is being fed by Helen who mixes up her food to a consistency which Margaret can swallow.  She can only take her medications crushed up and served in yoghurt.  Her breathing has become more and more laboured.

Her GP visited her on Wednesday and ordered an Arterial Blood Gas Test on Thursday.  This is a very painful test but when I sat with her while it was carried out she didn't seem to notice.  Her GP phoned with the results today.  They were not good.  In the link given above the normal is about 75 mmhg and below  26 the patient is near death.  Margaret is about 30 even with all the diuretics.  She is to have her oxygen intake increased.

Throughout the day her Oxygen Saturation level has been monitored and it has remained below 80 all day.  Margaret is extremely weak and drifting in and out of consciousness.  She recognised me during my visit and didn't want Helen to leave this afternoon.  Helen has just left in a Taxi at 10.00 pm to spend the night with Margaret and I shall relieve her at 8.30 am tomorrow.

Later in the day I shall come home to pick up Louis who she wishes to see.  I expect we will do turn and turn about until things resolve themselves.

Saturday, November 6, 2010

Margaret Appears to Be Failing.

After posting my blog on Wednesday we took Louis into visit Margaret.  Actually Helen went in early and had lunch with Margaret in her room which means that Margaret had two teaspoons of food and Helen ate a full lunch.  It was roast chicken so Louis got fed a few pieces from Margaret's plate.

After lunch Margaret's GP dropped in to see how she was.  He is very kind to Margaret and checked her lungs and also her mouth as she appears to have problems there.  Her lungs are still half full of fluid and her breathing is laboured so she will probably need oxygen and Frusimide/Lasix for the foreseeable future.  Margaret's mouth showed that she has Gingivitis but no obvious cavities in her teeth.  To be on the safe side I have arranged for a Dentist to visit her in the Nursing Centre in a few weeks time.  Any dental work will have to be carried out in hospital.  She is now using a mouthwash recommended by her GP called Amosan which is, supposedly the best for treating gum disease.

Before he left I had a private word with him and he said that she is getting weaker and she is beginning to fail but knowing how Margaret's body fights to survive she could last a little longer yet.

On Thursday Helen had lunch with Margaret and while she was there saw that Margaret was developing pressure sores on he bottom.  These are being treated by the RN but as she spends most of her time sitting in her chair some form of pressure relieve pad was required.  I looked in for a couple of hours after lunch and we watched more of the Melbourne Spring Racing Carnival on TV.  Margaret loves the horses.

Yesterday, Friday,  Helen and I went in search of something for Margaret to sit on and the new mouthwash.   Where we live is not really a good place to find medical things but we finally found a Pharmacy stocking Amosan and a recently opened store stocking a pressure relieving egg grate type mattress overlay which I intended to cut down to fit her chair.

Helen went in for lunch as she now intends to due each day.  She found that Margaret had had some  form of a dizzy spell and had been put back in bed.  She looked really weak and when I arrived an hour or so later had improved a little and had her usual couple of teaspoons of lunch fed to her by Helen.  She looked pretty awful but still showed a flash of humour when Helen announced that she had given up smoking and that produced a Nicorette stick to draw on!  She has been trying to give up for 25 years.




Margaret in bed.

I cut up the foam egg crate materiel and fitted a double layer on her her chair seat so it would be available when she gets up again.  We both assited her in using her electric tooth brush to clean her teeth.  She can just hold it in her right hand and we directed her where to place it.  She has to be told, "Top left, now top centre etc." otherwise it just stays in one position.  We also got her to rinse out he mouth using Amosan and the carers have made a note to use it after breakfast as well.    Unfortunately she dribbles a lot of it from the right side of he mouth.

I had intended that Helen should go home next Sunday the 14th but we both agree that we should wait what the next few days bring before making the airline booking.  It is a long way to Adelaide!

We are going in about 10.30 am today with Louis and I will bring him home at lunch time and return to pick Helen up this afternoon.

Wednesday, November 3, 2010

Helen is Here

Margaret was much the same for the rest of last week and her GP visited her on Thursday evening and phoned me to let me know that the fluid level in her lungs appeared to be receding but he would keep up the Frusimide/Lasix  until they were clear.  She is still on Oxygen.  She is definitely showing signs of a recent stroke and leans to her right when sitting in her chair and dribbles from the right side of her mouth when drinking or eating.  The GP doesn't think that there is any point in her having a CT scan to determine the extent of the stroke as she is still a high risk candidate for a heart Attack and/or complete Renal Failure.

I visit everyday now for a couple of hours and on Saturday I took in Louis.  She loves him visiting and after his first excitement at seeing her he settles down and accepts pats from everybody.  Margaret was very exited about Helen's visit and it took some time to explain that it would be about 11.00am on Sunday before she would be there.

I drove down to Brisbane Airport early on Sunday morning to meet Helen's 8.00 am flight and drove her straight to the Nursing Centre, sort of!  Noosa had its annual Triathlon which has 8,000 competitors.  This meant that I had to take a 25 km detour to avoid the closed roads but we got there just before 11.00 am.  Helen went in on her own and received a great welcome from Margaret.  Helen is now the best daughter in the world which is a change as during her last visit she was the worst!  We spent several hours with Margaret before taking Helen home to unpack and eat.

Helen visited mid-morning on Monday and had lunch with Margaret in her room.  I dropped in after lunch and stayed with them for a couple of hours. Helen was a little taken aback by Margaret's physical deterioration but amazed by her improved mental condition.  She still has dementia but is living in the here and now and not hallucinating.  She has difficulty in talking but what she say is sensible and either reacting to real time events or asking sensible questions.  She is also in a very loving mode.

While there Helen arranged to get a present from Margaret to me for my birthday on Tuesday and prepare for the Birthday/Melbourne Cup party planned for next day.

On Tuesday Helen went shopping and I cut up the meat and cheese etc for the party.  We visited at about noon and set up Margaret room.  We arranged tables around her chair and Louis sat as close as he could.  I think the regular tit bits from Margaret helped.  Margaret and Helen had a bottle of Champagne and I drank non-alcoholic diet ginger ale while we had various meats, cheeses, pates tomato and cucumber on cracker biscuits.  At 2.00 pm we watched the big race on Margaret's TV and wouldn't you believe it a French horse won.  Fortunately we hadn't placed any bets but enjoyed looking at the horses and fashions on display.  I left at 2.30 pm taking home the debris and Helen stayed until 5.00 pm. 

It was a nice little party and some of the carers dropped by for a biscuit and pate.  They were involved in the big Melbourne Cup Party in the main dining room where most of the mobile residents enjoyed a special lunch followed by the race on TV.  The tables were set up in a racing theme and the ladies all had hats and dressed up for the occasion. It was a lot of work but I think the residents liked it.


Today things will be back to normal and we shall visit later today.

Wednesday, October 27, 2010

Chairs and Photographs

Now that's a different title isn't it but it sums up the last few days.

In spite of what Margaret said about Louis I took him in to visit her on Saturday and Sunday and she was really pleased to see him.  I also took in my external hard drive as Margaret's new TV had a USB connector and it was supposed to be possible to show JPEG images through it.   It was!  We have had several hours of slide shows with photos datng from 1918 upto last month.

The carers and RNs have dropped in to see some of the pictures and one from about 1970 got the most interest.



Margaret's Mum, Helen and Margaret.

They just loved the mini and the general comment was, "Look at those legs!".  Margaret just loved all the pictures of our pets from over last 50 years.  I am now adding photos from more recent events and we will have shows most days.

Their was one problem. The electrically assisted recline and lift chair which we had bought for Margaret had stopped working and even worse it failed to support her legs without being propped up by another chair.  The chair is nearly new but I had no warranty agreement and it would have to be returned to the supplier for repair.  On Sunday afternoon I decided to take in one of our reclining chair from home while the other was being fixed. 

First I had to get it out of the house and found that it would not fit through any of our doors without laying it on its side and wiggling it through the doorway.  Next I had to get it onto my trailer which if did using a sack barrow and laying it on its back on the trailer bed.  At the nursing home I got it on the sack barrow and wheeled it to Margaret's room where one of the male carers assisted me with swapping the chairs over and getting the broken one back on the trailer.  I didn't stop but just left Margaret to be sorted out by the carers.  When I went in on Monday she was lying in the replacement chair and fast asleep.  When she woke she said how happy she was having her "own" chair back.  She does not want me to bring the electrically assisted one back!

Actually the carers told me that they like the manually operated ones so does anybody want a slightly used, broken electrically assisted recline and lift chair at present lying on my trailer in the garage!!

On Monday and Tuesday Margaret has been much the same.  That is very weak and still requiring Oxygen assistance for breathing.  The pain control is being better managed and she appears to be more comfortable.  Her GP visited on Monday and was pleased to say that she hadn't deteriorated but still said that she could go into a decline quite suddenly.  In the mean time Helen will be here on Sunday and we are planning my birthday party which will be in Margaret's room next Tuesday lunchtime when we will also watch Australia's Premier horse race The Melbourne Cup.  Louis will also attend and visitors are welcome.

Friday, October 22, 2010

Still Holding On

I visited Margaret on Sunday and took Louis in with me.  Margaret was able to feed him some treats but for the most of the time he sat, on his lead, next her doorway to the hall.  Here he could see the carers and other staff about their business and received many pats and cuddles.

Margaret was much the same with the exception that she had been given an enema and her constipation cured.  I wish all her problems could be cured as easily.

On Monday  I visited on my own using my little folding bicycle.  Margaret was not feeling too well so I just sat with her for a couple of hours in the hope that her GP would visit which he didn't.  Margaret was a bit upset as she claimed that he told he he would see her on Monday.  He didn't visit in the evening either.

On Tuesday I went in by car which was a good thing  as her TV had broken down leaving her just sitting and staring at nothing. 


I  went to the local large TV retailer and bought her another. I spent the rest of the visit setting up her new TV.  I don't think that she really understands the programs but likes to have it on.  During the visit the RN on duty dropped in to give Margaret her medications and offered the opinion that Margaret's breathing problems were caused by too much oxygen drying out her airways.  I thought that this was a bit odd as Margaret literally gasps for breath following any exertion or even using a straw to drink but kept quiet as I would talk to Margaret's GP in the next day or so.

I visited Margaret early on Wednesday and took Louis in with me.  I was going out to my computer club meeting in the afternoon.  Margaret looked in a lot of discomfort but the RN said that she looked OK to them.  While there I checked to see if she was still using painkilling patches, Norspan.  I found one on her back dated 31 August 2010 which, as they only lasted for seven days was a bit useless. I queried it with the RN who looked all through Margaret's record and she could not tell if she was having patches or not.  She could have morphine or Oxycontin as require but as she never asked she wasn't being given them.

Back at home I left a message for Margaret's GP who called me back later in the evening.  He would drop in and see Margaret on Thursday.   He had been intending to visit her on Monday but had been off work with an infection and was only just over it.

I visited at 12.30 pm on Thursday.  She was in even worse condition and in the end we got the RN to give her an Oxycontin which helped her settle down.  Just before I left A, her GP, dropped in.  He checked her lungs and was dismayed to find them still very wet and she will be on her large dose of Frusimide/Lasix for at least another week.  He also reinstated the patches and emphasised to the RN's that Margaret is critically ill with Pulmonary Oedema and was also in continual pain.  Their primary duty was to keep Margaret comfortable even at the risk of over dispensing pain killers.

Poor Margaret had told me earlier that she would never get out of "this place" and I promised her that if she got well enough I would take her out.  I mentioned this to her GP and he said that it would be very unlikely that she would even improve that much.

When I phoned Helen in the evening we agreed that in order to give Margaret something to look forward too that we should arrange a birthday party for me on the 2nd November.  I will get Helen up to stay for another couple of weeks.

I am off to tell Margaret this news in a little while.  She doesn't want me to take Louis is as she gets upset as she can't really cuddle him. 

I think that the problem with Margaret and the RNs is that she is now in the Dementia wing, where she belongs, but they had forgotten that she was originally in the High Care wing and still needs the higher level of nursing for her illnesses.  Most of the other dementia residents are reasonably fit.

Sunday, October 17, 2010

"Holding the Line"

The somewhat militaristic quote is from Margaret's GP, A.  Since Wednesday Margaret has been much the same.  Her legs and arms are not as swollen but her body is and she still has pulmonary oedema requiring her to supplement her normal breathing with oxygen,  I visit everyday and sit with her for a couple of hours.  She doesn't speak much so I normally find an old movie on TV and watch it with her.  Does anybody remember the magnificent dancing in Seven Brides For Seven Brothers?

One day Margaret actually had a good grin on her face following a little incident in the ward where her room is.  It is a dementia ward and there are some harmless people who just wander up and down.  Some say hello but others wander in silence.  Like Margaret they are all washed and dressed every morning and can watch TV, stay in their rooms or just wander.  On Friday we heard from outside in the corridor, "No John (not his real name)  don't take your clothes off!"  Followed a little later by the concerned carer, "Go back to your room and we will put some clothes on you."  Margaret was intrigued and asked what was going on so in my usual silly way I replied, "John has just heard about the hot young thing in Room 6,"  Margaret asked, "Whose room is that?" and when I said, "Yours!" she broke into a huge silly grin.  Somewhere in her head humour still remains in spite of all her suffering.  John was dressed in track pants when I left.

On Friday I caught up with Margaret's GP when he made the quotation in the title.  With the huge dose of Frusimide she is having her pulmonary oedema is staying constant although fluid has come off her legs and arms.  She will remain on the frusimide at the same level until she can get by without oxygen support.  He will then gradually reduce the dose until he can find a level where the oedema is just held in check.

Yesterday I took Louis in to visit Margaret and found her in bed.  She has now developed severe constipation and is having enemas to try and get things moving.  I shall visit later today.

Wednesday, October 13, 2010

Margaret is Holding On

On Saturday I took Louis into see Margaret.  She was in her chair and very weak.  She held out her right arm to pat Louis and he put his paw and just rested it on her arm.  He did not scratch but his rough pads just tore Margaret's skin.  I told the RN that I wouldn't bring him in again but was told that it is better for Margaret that I do and that her skin is so fragile that they have caused minor tears just supporting her.


 Margaret waiting to be patched up.


The skin tear.
It is now noticeable that Margaret does not sit up straight any more but leans to her right.  It is probable that she has had a mini-stroke as the right side of her face has also drooped a bit.

After dressing the arm Margaret was able to pat Louis and give him some treats he spent the next two hours just lying next to her chair except for when Margaret and he needed a comfort stop.  Margaret was having difficulty breathing and swallowing and was still on oxygen full time.

I visited with Louis on Sunday and Margaret was much the same.

On Monday I visited and stayed a little longer to try and catch her Doctor who hadn't seen Margaret since Friday evening and in my opinion she had deteriorated since then .  He actually visited in the evening and increased Margaret's Frusimide to 280 mg a day, the most she has ever been on.

On Tuesday the RN told me that she was very lethargic but quite happy.  They were having to crush her medication and serve them up in what looks like Yoghurt.  I stayed for a couple of hours and Margaret dozed on and off in front of her TV.  We had short chats about Louis and friends who had sent their regards and support but mostly she just sat there.  She is still leaning to the right and she dribbles a bit down the right side of her face when she drinks.

I shall take Louis in after lunch and hope to meet her GP if he makes it.

Saturday, October 9, 2010

Margaret is Improving - Sort Of!

I have visited Margaret every day this week.  There has been some limited improvement in Margaret's fluid retention and the pulmonary oedema has reduced over the last day which is a relief as even with oxygen she was gasping for breath most of the time.  I managed to talk with her GP last night after he had visited her and he thinks that she will have to be on diuretics for some time yet.  Here is where the problem for Margaret lies.  She started on 120 mg of Frusimide a day last Friday which I am told in a significant dose but on Tuesday it was increased to 200 mg a day.  It was not until yesterday, Friday, that the fluid level in her lungs began to reduce.  She will be on 200 mg a day until her legs return to near normal and her lungs are clear.

I asked the GP about the effect this large dose of Frusimide would have on her kidneys and he replied that he did not know nor was he going to take blood tests to find out.  Until her lungs were clear she was still in danger of congestive heart failure.  I  should accept that the main object of the medication is to make her more comfortable and it is not a cure.  The underlying cause of the fluid build up still exists,  she is already in chronic renal failure so the outlook is still grim but Margaret should be more comfortable.

Margaret has not been eating very much this week but the fluid around her waist makes he look very fat and her skirts are getting tight.  She spends most of the day in her chair in front of her TV which is normally on.  Her confusion has returned and she is always asking me what our phone number is and I write it down for her.  She also is fascinated by the controller for her chair which has two buttons, up and down.  She tells me that she doesn't know how t it works and she always gets me to make small adjustments to the angle of her back or foot rests.

She loves having Louis in to visit her but because she is too ill to take out for a walk in her wheelchair Louis has to sit next to her for two hours and gets bored so I don't take him in everyday.   Even yesterday her legs went beetroot coloured when she was taken to the toilet for 10 minutes and they were not elevated.

I shall take Louis in today if the rain eases up.  We have had 250 mm (10 inches) overnight and he got soaked on his early morning walk. (ABC News report)

Tuesday, October 5, 2010

Margaret has Problems

This is a difficult blog to write as the future for Margaret is on a knife edge but first lets go back to last Monday when Helen made her goodbye visit to Margaret.  She stayed over lunch and caught the 3.00 pm bus home.  I think that she cried all the way home as we both know that Margaret is in a bad way.  We spent a quiet ev evening together and went to bed early as Helen was catching the 2.45 am, Tuesday, shuttle bus to the airport.  I got up an saw her off.  She was clutching a handful of tissues.

At 11.45 am Helen phoned to say that she was home back in the Adelaide Hills so I was able to let Margaret know that she was safely home when I visited at 12.30 pm with Louis.

Margaret was in her big chair with her feet up as her legs were still very swollen but she was quite bright and had eaten some lunch.  I had taken in the remains of the bottle of wine which we had on Sunday and Helen had forgotten to take in on Monday.  There was enough for a good glass full for Margaret and a small glass for me.   It was quite a good visit with Margaret chatting away as she had been to concert in the dining room in the morning.   I left just after 2.00 pm and left her watching TV in the knowledge that I would visit again on Thursday .

On Wednesday I cleaned up the house and mowed the lawns which had got in a bit of a mess during Helen's visit.

I visited at 12.30 pm on Thursday and Margaret was in a good mood and I took her and Louis for a walk around the block.  She was grumbling a bit about wanting to see her GP and I agreed that, if he didn't see her on Friday, I would phone him.  We agreed that if Margaret was OK we would take the bus to Tewantin to have lunch at the RSL.

On Friday I took a day off from visiting as previously agreed with the home.  Helen phoned her and was concerned that she didn't sound OK and was in some pain with her swollen legs.  She phoned Margaret's GP and left a message  and was assured that he was visiting Friday evening and would let me know if there were any concerns.  As I received no phone calls I assumed that Margaret was OK.

I turned up at 11.00 am in good time to get Margaret ready and in her wheel chair to catch the 11.30 bus into Tewantin only to find Margaret tucked up in bed on oxygen.  I sought out the RN who said that Margaret's GP had visited the previous evening as promised and found that Margaret was in a bad way.  The fluid had spread to her lungs and she was literally drowning.  He got her on oxygen and reluctantly put her back on diuretics over the weekend as he was going away.  Apparently Margaret was a little better in the morning but if she sat up for any time her legs were going purple  so she was being kept in bed with her feet and head elevated - in a U shape.  She was upset that I could not take her out but her carers didn't even like taking her to the toilet as she was very weak. her legs swelled up and she became very breathless.

She continued like this over the weekend.  She had also stopped eating once again.  Yesterday Morning I finally got a phone call from Margaret's GP.  He had been trying to contact me over the weekend but had the wrong number, more later.  He repeated what the RN had said and added that there was a strong chance that the diuretics would cause Margaret's kidneys to fail once again.  I aske that if they did that Margaret should remain in the Nursing Centre to quietly slip into a coma and die peacefully.  He said that that was his plan but he hadn't given up on her yet.

I met him at the Nursing Centre at lunch time.  He said that Margaret was a little better but still in some distress.  He would give it another day and if things hadn't improved would increase the diuretics and take a chance with her kidneys.  Apparently death from acute kidney failure with the correct palliative care is much better that dying gasping for air.   Margaret has also developed another Urinary Tract Infection, UTI, and in is on antibiotics and morphine is also being given which should improve her breathing while the diuretics kick in . He is visiting her again today.  I stayed with Margaret for couple of hours.  She is very grumpy (who wouldn't be?)  and I assured her that I would visit every day until she is stable once again.

The story about the phone number was that her GP had visited her on his way for a weekend trip.  He had asked Margaret for our home phone number and she had got it wrong!!  At present she is quite normal with no hallucinations but still has memory loss problem.  I expect the UTI and morphine will bring back the confusion for a while.

I shall take Louis in after lunch. 

Monday, September 27, 2010

An Outing For Margaret

The last week has been a mixed one for Margaret.  She started by being moved to a new room which, unfortunately is back in the High Care Dementia Wing.  The room itself is very nice and is a single room where she will probably stay.  This has meant that we were able to move in a few personal items such as her own TV and DVD player.  She has room for another armchair which makes it more comfortable for us as we usually use the wheely walker or wheelchair to sit on.

Her mobility appears to have decreased and she has to be helped in and out of her bed or big armchair.  She rarely uses her wheely walker as the carers prefer her to use her wheelchair.  More alarmingly her feet and legs have become incredibly swollen and fluid is also collecting around her lower abdomen.  She gets very short of breath following even light activity.

Notwithstanding all this she is much more settled.  She still grumbles about the home, her carers, me and of course Helen but she appears to accept that this is where she lives.  We have taken Louis in to see the new room which cheered her up.  One noticeable thing is her lack of concentration.  We have tried to get her to watch TV or a DVD with us and the carers also help her to select her favourite programs but she loses interest after 10 minutes or so and wants it switched off.  She spends most os the time just sitting and dozing in her chair.

Helen has visited everyday but I have decided to visit on Tuesday,  Thursday, Saturday and Sunday which gives me three full days a week for my own activities.  This has been recommended by Margaret's GP and the carers who tell me that she is much more settled.  I don't know what she will do after today as Helen flies home early tomorrow morning.  We shall see.

Yesterday was Margaret's seventy fourth birthday which she had forgotten.  We took in cards, flowers and some small gifts.  We suggested that she might like to go out to lunch which she wanted to do.  We decided to try the bus to our local shopping mall, Noosa Civic,  where we hoped to get lunch at the bistro located there.  The carers got her into her wheelchair and loaned us the lifting belt in case Margaret had to go to the toilet while she was out.  Civic has great disabled toilets and we would be able to take the wheelchair in to them and using the belt transfer her to the toilet and back.

We caught one of the small buses to Civic.  The driver put down the ramp and I was able to wheel Margaret straight into a wheelchair space by the door.  Unfortunately I had her facing backwards and she grumbled all the way to Civic which was only a ten minute ride.  I sat behind her and held the chair steady. 

At civic we found the bistro closed so went and got lunch at the Coffee Club.  Margaret had "all day breakfast",  I had a beefburger and Helen Calamari.  The Coffee Club is not licensed so we drank tea and coffee.  We cut up Margaret's food for her and had to feed her her fried eggs as she doesn't have the motor skills to use her fork with slippery things.  She just used her fingers to eat her bacon and actually ate a full meal for the first time in months.  She enjoyed watching the other shoppers walk by while we ate.

Afterwards we toured the shops and bought her a new skirt,  her trousers are too difficult to manage.  We also bought a bottle of wine to celebrate her birthday back at the home.  We caught a much bigger bus home and I set her up facing forward which she preferred.  Helen sat behind her steadying the chair.

Back at the home we all had a drink of Chardonnay which Margaret had chosen.  The carers settled Margaret back in her chair and we left her sipping on anther glass of wine when we left.  She was very tired and her feet had swollen even more while she was out but she was very happy.

Helen and I were both so happy that we now know that, while her health holds out, I can take Margaret for brief shopping or lunch trips using the bus.  The drivers were terrific and helped me with the chair.

Helen is making her final visit to Margaret today before she goes home tomorrow.


Helen helping margaret with her lunch


Margaret watching the other shoppers walk by.


A satisfied Helen


Margaret on the bus being steadied by Helen



Helen and Margaret enjoying their Chardonnay while admiring Margaret's flowers.

Tuesday, September 21, 2010

Home Again

I spent Friday morning exploring Bargara and Bundaberg.  The former is a small seaside town which is about to be developed.  There are several 5 or 6 story unit blocks just finished or under construction and on the outskirts of town is a new shopping centre with a Woolworth's Supermarket.  Bundaberg is quite a big old fashioned town with a strip shopping area in its CBD.  There appears to be only one really large store, a Target.  I spent the afternoon resting and surfing the web before having dinner at the hotel.  I watched a bit of TV before having an early night.

I left before 8.00 am on Saturday to drove home.  It was the first day of the Queensland School Holidays and there was plenty of traffic in both directions.  There was also a fair number of large trucks heading to Brisbane which tend to tail gate small cars such as mine travelling at the speed limit.  I think it is intimidation and it scares me.

I got home at 11.15 am  and after a snack Helen and I took Louis to visit Margaret  after lunch.   She was in a nice mood but told me that Helen had not come home the previous night.  I can still do no wrong as poor Helen gets all the flack for imagined transgressions.  We stayed for a couple of hour before we returned home and I had an afternoon nap.

Sunday was Louis' fifth birthday and we organised a picnic in the Nursing Centre's little courtyard of the main dining room.  We had a variety of snacks such as ham, tomatoes, cheeses, pate (3 types) and of course Margaret's favourite liverwurst  washed down by Champagne (local imitation variety) .  Louis loved the ham and had a great time.  Margaret also enjoyed herself and the RN and carers dropped in to wish Louis a happy birthday while also having a share of the snacks.  The good thing was that Margaret ate quite a good meal.  She has been eating very little over the last week or so.

After the picnic we took Margaret back to her room and the carers got her back in her chair for a rest.  We left about 2.00pm.

Sunday was supposed to be a special day as it it was Margaret's and my 52nd wedding anniversary.  We had intended to take Margaret out to lunch using either the bus, which has a ramp for wheelchair access, or the special Access Cab.  The carers were in on the plot and made sure that Margaret kept her feet up to minimise the swelling and stop the leaking.  This had succeeded but when Helen rushed ahead of me to make sure that Margaret had a card and gift to give me she found that Margaret had forgotten about the anniversary.  When I arrived she thrust the wrapped bottle of Red, which I like, and the card at me.  I gave her a card and a pot plant which we put on the table next to the window and in full view from her chair.

Unfortunately Margaret was not up to coming out with us so we brought lunch to her.  I went home and got another bottle of wine and ordered her favourite Indian Meal from her favourite restaurant.  I was back within 45 minutes and the carers had provided glasses, cutlery and plates so we had an impromptu Anniversary party in Margaret's  room.  She was very loving to both of us and we left her to rest after a couple of hours.

Over the last week she has settled very well and does not ask to come home.  In fact she calls her room home and she actually believes that she owns it and that Helen and I live somewhere else in the building.

We have decided that Helen should go home after Margaret's birthday which is next Sunday when we will try and take Margaret out for lunch.  Helen is booked home on the 28th September.


 
Louis at His Party


Margaret at Louis Party





Helen at Louis Party

Thursday, September 16, 2010

I Take A Break

This post is being written in Bargara about 250 km north of Tewantin where we live.  Helen persuaded me to take two nights away from worrying about Margaret so I got on the web and booked the cheapest Motel in Bargara for Thursday and Friday nights.

Bargara is a nice if somewhat old fashioned, seaside town 15 km from Bundaberg.  The Motel is straight out of the 1950's except for satellite TV.  I have a large bedroom and small kitchen plus an even smaller bathroom.  It is very clean and as I said cheap.  It is also only 100 M from the local hotel which serves meals and about 150 M from the beach.  I hope to spend tomorrow just walking and resting up.

The main problem is that it doesn't feel right.  Over the last twenty years of my working life I spent many nights in similar motel rooms not to say really expensive ones as well.   Coupled with my cycling and camping holidays I have spent many, many nights away on my own so what is different?  I think it is that I realise that Margaret will not be at home when I return.  Now don't get me wrong were weren't your "lovey , dovey couple" but we were always there.  After Helen goes home next week I shall be on my own for the first time in nearly 52 years.

Enough of the maudlin stuff.


On Wednesday morning I visited Margaret to find her in a furious mood about Helen.  Apparently she had stayed out all night instead of staying with Margaret.  I assured her that Helen had been with me but Margaret didn't believe me.  I stayed for a couple of hours and assured Margaret that Helen would be in later as she was getting the results of blood tests and even more prescriptions.  I left just before lunch as this appears to be best as she tends not to eat while we are there.  The carers told me that her GP did visit and described Margaret as being in a bad way.  She can't go out as she must keep her feet up as much as possible.  Apart from that Margaret appears to be settling in very well.

Helen spent several hours with Margaret in the afternoon and told me that Margaret had had breathing difficulties in the afternoon and has been put on oxygen for a couple of hours.  Of course Helen had to answer for her overnight behaviour and Margaret just would not believe that she was at home with me because she should have been at home with her!!

This morning we both visited and took Louis in as well.   We managed to take her for a brief walk in her wheelchair and also sat outside for a little while.  I told her that I would not be coming in on Friday and she accepted that I was getting away from Helen who was still in trouble.  Helen has arranged to have lunch with Margaret tomorrow while I am away.  Margaret is now very confused and her legs haven't improved.  Helen can contact me on my mobile if there is an emergency.

I left home at 12.30 pm and drove straight here and arrived just before 4.00 pm after a long but trouble free drive.  I have had dinner at the local pub and will have an early night.  I have just spoken to Helen and she and Louis are OK.

Tuesday, September 14, 2010

Update

Helen's lunch with Margaret went off OK but that is when her problems started.  Margaret wanted to go out so Helen had the carers put her in the wheelchair and started out taking her on a walk around the block.  This wasn't good enough for Margaret she wanted to go shopping.  Helen said that she couldn't push Margaret to the shops and, if she could, she couldn't manage her if she needed to go to the toilet.  Margaret got very upset and either during the walk or back at the home grabbed poor Helen's arms and she still has the bruises.  Margaret also demanded money which Helen said was my responsibility. 

In the end Helen contacted me on her mobile phone and got me to talk to Margaret to calm her down.  It took some time and I didn't really succeed.  I said that I would be in on Sunday and walk her into Tewantin and I would also bring some money so she could go shopping.  I would not take Louis as our Council bans dogs from most shops and all eating areas even outdoors.

When Helen came home we agreed that between the two of us and using a lifting belt we could probably manage Margaret on a shopping trip together.  We had the option of using the Access Cab service which carried wheelchair bound passengers or using the local bus service which has wheelchair ramps and special areas where  passengers sitting in their wheelchair can stand.  We thought that the bus would be OK as it has a regular service and is cheap.  If we got stuck we could phone and Access Cab but there could be quite a wait as theycarry normal passengers between wheelchair pickups.

On Sunday morning we arrived at 9.30 am as our local shopping centre, Noosa Civic, opens from 10.00 am.  The bus left about 10.25 am which gave us plenty of time time get Margaret ready, toileted and in her chair.  Margaret was sitting in the dining room finishing a cup of tea and seamed surprised to see me.  She didn't  want to go to the shops as she wasn't feeling well enough.  I left her with Helen and went home to pick up Louis for a visit.  There were four other dogs visiting.  We took Margaret for a brief walk out side and she started off again about going to the shops!!  She also got stuck into me for hiding all her money.  I explained the she brought a lot of money, over $200.00, into the Nursing Centre and it had been put into the office safe and she could get it out on Monday if she wanted. When I asked her what she wanted to buy she said personal items which the Centre supplies anyway.  We will give her a purse with a few dollars in it so she feels that she has some money for emergencies.  We left her in the dining room after a couple of hours as lunch was being served.

Margaret's condition was still pretty rotten.  Her legs were very swollen and fluid was seeping out and running down to her feet and her lambskin slippers were saturated.   She is back on regular injections to prevent blood clots forming in the legs and causing strokes etc.  The fluid is also putting stress on her heart.  Fortunately her breathing is much better so her lungs are reasonably clear.  Previously she would be put on Frusimide but, as these literally stop her kidneys working, they can't be used any more.  She has to spend most of her time in her chair with her feet up.  She can't read and doesn't want to watch TV so she is incredibly lonely and unhappy.  She normally gets on OK with her carers most of whom are really loving to her but there are one or two officious ones who upset her.

On Monday Helen had to go to the Doctor's for some prescription updates so I went in on my own at 12.30 pm just after lunch.  Margaret had been in the dining room but had asked to be wheeled back to her room where she was still sitting in her wheelchair.  She wanted to get out but the carers were busy finishing off lunch in the dining room and were wheeling others back to their rooms.  Finally we managed to get one who said that she could manage Margaret on her own.   I pointed to the written instruction for Margaret's care which stated that she require two people for and transfers.  This was an officious carer but she did get help and they got Margaret to the toilet and back into her chair.  Margaret's GP, A, was scheduled to call in between 1.00 and 2.00pm but was delayed at his surgery and phoned to say that he would be in later.  Helen had arrived at 1.00 pm and I took her home just after 2.00 pm.

During the visit Margaret was really grumpy and as usual Helen bore the brunt of it as she is still seen by Margaret as a rebellious teenager fast approaching 48 while I am a busy engineer with other things to do.  Margaret's legs looked worse to me and she has had to give wearing slippers as they just fill up with fluid.  All she can really do is rest in her chair with her feet up and resting on towels to soak up the fluid.  We haven't heard what her GP thinks and I will phone him later in the week before he goes away for a few days holiday.

Saturday, September 11, 2010

Margaret's Progress

We took a break from visiting Margaret on Tuesday and Wednesday as advised by her GP and took Louis into visit her on Thursday morning.

When we arrived Margaret was in her chair with a mattress in front of it.  Both her legs were weeping but she actually looked a lot better.  She was still very confused but a lot calmer.

I asked the carers if we could take her for a walk as it was a beautiful morning and they got her into her wheelchair.  Helen held Louis' lead as I pushed Margaret's wheelchair around the block for about 45 minutes.  Margaret knew that we hadn't visited but seemed to think that I had been away on a business trip which I did a lot of in the 70s and 80s.  Helen was still in trouble as she hadn't visited while I was away!  Margaret now refers to the Nursing Centre as "our home" and appears to consider the cares as bossy neighbours.

The RN told us that Margaret had settled down a lot and was being quite pleasant to everybody and much easier to care for.  She was still having hallucinations and they wondered if Margaret had had any unpleasant experiences as a child as she was very scared of being sexually assaulted.  I first met Margaret when she was  nineteen and she has never mentioned anything to me except being chatted up by an American Serviceman near Hampton Court in her early teens. Perhaps there was more to it than she said.

Just before lunch Helen and I left to take Louis home and I told Margaret that I would return at 1.00 pm to see if her GP was dropping in during 1 and 2.  Margaret was going to have lunch in the dining room and was taken there in her wheelchair as we left.  When I returned lunch was over but Margaret was sitting by herself in the dining room.  She had refused to eat anything and had got upset because I hadn't returned.  In fact I was there just before 1.00pm.  I wheeled her back to her room and the carers took her to the toilet and settled her in her chair.  I stayed until 2.00 pm but her GP didn't visit. (He actually visited in the evening).  Margaret was still very confused and we had a long conversation about my "business trips" and Helen's lack of concern about her being left at home on her own.  While she liked some of the people who visted (carers and RNs) some were bossy and they didn't seem to realise that this was "our home".

Before I left I was advised to limit my visiting as Margaret got upset when I left and took some time to settle.  She was quite OK after she had settled and quite happy if somewhat confused.  Apparently she misses me and one day's absence is treated as weeks away on "business".  I hadn't realised how much affect my  life as an engineer working on defence programs entailing numerous trips away from had had on her.  I do know that at its peak I spent more working days away from my office than in it for a few years.  At the time Margaret was heavily into local theatre and film work and said that she was OK.

On Friday I couldn't make up my mind what to do about visiting but finally decided to go in by bus with Helen.  We arrived at 12.30 pm to find Margaret sitting up in her chair having eaten a good lunch in her room.  She was is quite a nice mood but complained that we hadn't been in for days.  She knew that I had to go away but Helen should have looked in on her.  Again she was back in the 70s when Helen was a difficult teenager and we didn't know where she was for quite long periods.  Because we had come in by bus we set a definite time to leave at 1.50 pm as our bus left at 2.00 pm and could be a little early.  Margaret took this quite well and seemed quite settled when we left.

We told her that I would return on Sunday with Louis but Helen would look in and have lunch with her on Saturday which is where she is now.

Tuesday, September 7, 2010

A Tough Few Days

When we got into see Margaret on Friday morning she was lying in bed having had a series of falls.  We think it was three in total.  After the first two she had difficulty breathing and my GP, C, was called in.  He prescribed morphine to settle her down and she was put in her chair.  Unfortunately she was able to reach the controller and, being a compulsive button pusher,  she pressed the lift button until the chair seat was nearly vertical and she fell forward off the chair.  She has now badly bruised her good (right) arm and has even more bruising on her body.

Her breathing was gurgly  and loud but she enjoyed Louis visit.  I took him home after a short time as Margaret was too bruised to take for a walk in her wheelchair.  I returned after an hour with a sandwich and a Gin and Tonic for Margaret's lunch.  She again rejected the lunch provided and ate half a sandwich from home.  She drank some of the G and T but really wasn't impressed with it.  We stayed until 2.00 pm as Margaret's GP, A, was supposed to visit.  He hadn't arrived by the time we left and we needed to feed Louis and get out own lunches.  We later learnt that he arrived 10 minutes later but Margaret didn't remember him coming. We solved the chair problem by switching off its power supply after she had been installed so even if she found the controller it would not operate.


These pictures show Margaret in her chair and sleeping.  This condition was not to last for long.

On Saturday we arrived to find Margaret on the floor - well actually on the mattress.  Apparently she had fallen out of her chair by wiggling as far forward as she could to the end of the foot rest.  The chair then tipped forward and she landed on the mattress and went to sleep.  She had had an hours sleep on the floor as the carer's had just covered her up and left her to sleep.  It takes at least two people to get her up and as she was comfortable and in no danger leaving her there was the sensible thing to do.

The carer's got her up when we arrived and placed her back in her chair.  She was very confused and thought that she was in her own home but not in Queensland, possibly SA or even the UK.  She kept trying to get up as she was "going out".  She was in a a really nasty mood and poor Helen came in for a lot of flack for not visiting enough which is unfair as we moved over 2000 km from her. It was not a pleasant visit and Margaret's breathing was still laboured.  We left after giving her a sandwich and some white wine.  She only ate half a sandwich but actually liked the wine.

On nice thing was that our friend, B, dropped in for a visit and this did brighten Margaret up for a while but she slipped back into her bad mood after B left.

On Sunday we arrived and Margaret was in her chair and very upset. She had been agitated all morning and had thrown her breakfast on the floor.  Fruit and Yoghurt make a nice mess on the carpet which had to  steam cleaned later.  We learnt that after we left the day before she had asked the carers to take her to bus which would take he to Sunbury on Thames where she used to live 52 years ago.

She was upset all morning and we left both very upset by her behaviour.  We know that she is very ill and the toxins from her kidney failure and the pain killing drugs are making her dementia and confusion worse but the constant aggression towards us both is difficult to take.  When we tried to leave she tried to get out of the chair and come with us.

Early Monday morning Margaret's GP, A, phoned to see how Margaret had got though the weekend and said that he would visit her at lunch time.

The visit was worse that before and by 12.00 noon i had had enough and went out to the car park to wait for A leaving Helen alone with Margaret.  I believe that Margaret was really nasty to her and told her to leave.  A arrived at 12.45 pm and spoke to Margaret who responded with a long litany of complaints about us and the carers.  Most of it was incomprehensible.  A has now prescribed an anti-psychotic drug to ease her confusion and also sedate her.  Her also said that for our own sake we shouldn't visit Margaret for two days to allow her to settle down.  We will comply.

This is another broken promise as I had promised to visit Margaret every day.  I hope that her confused unhappy mind doesn't remember this.