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.

Thursday, September 2, 2010

Margaret Is Back In Noosa Nursing Centre

It has been quite a week.  Over last weekend in Noosa Hospital Margaret's physical condition improved a little so there was no reason not to return her to her room at the Noosa Nursing Centre.

On Monday she was transported, by ambulance, back to the centre and returned to her old share room.  Coincidentally the lady she was meant to share with was in the next room to Margaret in the Noosa Hospital and looked like being there for some time so Margaret has the room to herself; more later.

We visited Margaret soon after her re-admission and she was very unhappy as she thought that she was going home.  We called back in the afternoon and took Louis into visit her which was a great success as he jumped on the bed and gave her a great sloppy kiss.  We stayed for a little while and checked her medications were in order and that they were aware of her weak condition.  We needn't have worried she is now noted as requiring two people to assist her at all times even if using her wheely walker.

We  didn't take Louis on Tuesday morning.but stayed for about three hours with her.  She had spent the night sleeping on the floor!   She is considered a risk of falling out of bed so her bed is lowered as far as possible and a mattress placed on the floor to minimise the effects of any fall.  Margaret prevented this by actually crawling onto the mattress and falling asleep.  She was covered up and tucked in and spent a quiet night sleeping on the floor which she also did on Tuesday and Wednesday nights.  Margaret was very confused all the time we were there.  She appears to be living back in the late 1970's when we lived in Woodville,  South Australia.  In particular she constantly reminded Helen not to be naughty girl.  Margaret also thought that we were going to catch a bus back to South Australia and asked how we would get from the Flinders Street Bus Station home.  She was happy to hear that we would take a cab.  She sat up in a fairly basic arm chair and kept falling asleep.  After lunch, which she didn't eat,  she was put back in bed.  When I said good bye she said that i mustn't leave her as she wanted to come to South Australia with me.

Tuesday evening Margaret's GP ,A, phoned me to say that he had visited Margaret on Monday evening to sort out her medications and had seen her on her mattress where she was quite comfortable and happy.  He had visited just after lunch on Tuesday would visit her again on Wednesday lunch time and would discuss future care then.  He also said that Margaret told him that I had left her to return to South Australia.

Wednesday morning I clipped Louis and we took him in to visit Margaret.  She was sitting up in her arm chair.  Her legs were beginning to swell again and she was even more confused.  Helen was still in trouble for sneaking out of the house and not coming back all night, a thing she used to do in the 1970s.  We got assistance to get her in her wheelchair and took her for a walk around the block.  While Helen was pushing her she complained that Helen was deliberately hitting all the bumps!  Poor Helen she was cropping it while actually being quite sweet and careful.

I took Louis home and left Helen at the centre.  While I was away Margaret kept getting Helen to rescue me as I was stuck in her en-suite bathroom.  Helen had to open the door wide to show here that I wasn't there.  Over lunch she wouldn't eat anything and actually threw her Apple Crumble at Helen.

I returned in time to see A who will place Margaret on the Palliative Care Programme next week.  She is however very week and even with assistance has had her knees buckle when being transferred from her chair to wheely walker.  We are going to to take in her favourite sandwiches and some wine for lunch on Thursday.  A was also concerned with Margaret's legs and when I suggest a chair with leg rests agreed that it was necessary.  After Margaret gave A a long talk about the "Landlady" not being nice and poor Helen hadn't got anywhere to stay he left and will return on Friday, making four visits in five days.

Helen and I went to the local agents for electrically assisted recliner and lift chairs to check their availability and, by chance, he had the ideal chair available immediately.  It was second hand but looks new.  I notified the home that it would arrive between 9.30 and 10.30am Thursday morning and was asured that it would be OK.

We arrived just after 9.30 am this morning, Thursday, and the char had been delivered and Margaret was being settled into it when we got to her room.  The Carers were concerned that it was too big and took up the space where Margaret's mattress was placed at night.  This meant that the space for the other occupant was pretty much taken up by Margaret.  We thought that we could rearrange the furniture but as Margaret had fallen asleep in her new chair decided to leave it until she woke up.  Margaret slept all morning and even if the chair is only used for a short time seeing her comfortably sleeping in it makes its expense worth while.

I went home to make Margaret's lunch time sandwich while Helen stayed behind.  Margaret stirred occasionally and talked about our two dogs. We haven't had two dogs since 1984!  After I returned the space problem was solved by moving the other occupant' bed out so to all intents and purposes Margaret is in single room for the time being.

At 12.00 noon Margaret again rejected the lunch from the home although it
 looked very appetising but ate the Liver-wurst and Tomato sandwiches I had made instead.  She also drank a little fizzy white wine, which by law can't be called Champagne in Australia, to wash it down.  we left her at 1.00 pm still snoozing in he new chair.

We both agreed that Margaret is significantly weaker that when she left hospital and will take Louis into see her tomorrow morning.