Thursday 20th February – WA time! just after midnight.

9 years ago next May, Robert and I packed up our house, 3 cats and all our wordly goods and travelled half way round the world to live in Golden Bay in Western Australia. We stayed for 3 years and had a fabulous time enjoying the Australian life style and meeting lots of new friends. As they say ‘ all good things must come to end’ and it was with much regret and soul searching that we made the decision to return to the UK when my Mum was diagnosed with Lewy Body dementia. I came back to see her three times during the early stages of her disease. I must confess that I knew very little about LBD at the time and had no idea of the time scale or the physical and mental consequences she has subsequently had to face. I will say now, that although it was a difficult decision to make at the time I know it was the correct one for me and I have not regretted one moment of the time I have spent with my Mum since our return. We have however now decided that it is time for another visit back out here, to catch up with all our friends whilst they still remember who we are and also to reaquaint ourselves with the ‘Aussie lifestyle.’

We had initially planned a 2 day stopover in Singapore but changed our minds at the last minute due to that nasty little virus and transitted through the airport instead. It is a long flight but the time went quickly as I absorbed myself in 5 films. One of the films was called The notebook and starred Ray Gosling and James Garner – it is a lovely film but particularly sad as it is told by the husband at the end of his life as he comes to terms with his wife’s dementia. I must confess to shedding a few tears at the end.

We are now staying in a rather gorgeous 4 bedroom house on the canals in Mandurah which will be our home for the next 3 1/2 weeks. I feel very sad at having to leave Mum but take solace in the fact that she doesn’t really know who I am any longer and has little if no memory of my visits. My elder sister does not live far away so she will still have a regular visitor. I heard yesterday, that her doctor has prescribed her another course of antibiotics for a chest infection.  I have left her a number of cards which I have asked the staff at the home to open at regular intervals to read to her to remind her where we are and that we are thinking about her.

Sadly, my brother in law, who lives in Tasmania is also over here at the moment having flown over to spend the last few days with his mother who was in a nursing home. She passed away last night peacefully. May she rest in peace. I am sure he will take comfort that he was with her at the end.

And so, I look forward to 3 weeks of warm sunshine, catching up with old friends and visiting old stamping grounds. My friend Alison and her husband Alan arrive on Monday – they have been staying with my sister in Tasmania who joins us for the final week.

Goodnight everyone.

 

 

 

Wednesday 12th February – a sad day.

Whilst the country deals with the ravages of storm Ciara and the world deals with the corona virus , I am trying to deal with my mother! She is in a very bad mood today – she initially told me that she didn’t know me very well, didn’t want me to stay with her and told me to go home! When I told her I had driven a 1 1/2 hour journey to see her, she replied ‘ well you shouldn’t have wasted your money on the petrol!’ She then fell asleep and woke a few minutes later. I gave her a glass of port  and when I told her she should be more polite to her guests and told her what she had said she insisted that she wasn’t talking to me but to some man on a phone! One of her carers came in and asked her what she wanted for lunch. She insisted on scampi and chips which I knew she would not eat. As soon as it arrived she said she didn’t want it and would like an omelette!

Robert is at home today building me a mezzanine studio for the teddy bears!! It is a very ambitious project and he has spent months designing it and procuring all the tools / wood etc. He is a bit of a perfectionist and always prefers to work alone and does not like interruptions! I have provided him with cups of tea and chocolate but have mainly kept out of the way. He had one small melt down when he put some screw holes in the wrong place but otherwise all is going well! Work is slow but steady. He did say he thought it would be finished today but I think that was being very ambitious and will be surprised if it is finished by the weekend when we leave to go on holiday!

Mum’s omelette has now arrived but she is too tired to eat it and has fallen back to sleep.

This week I have been thinking a lot about grief. It is a very strange emotion and does not really have a useful purpose in evolutionary terms. The one thing we do know is that we are all going to die and will presumably lose people we are close to. I have found myself wallowing in self pity this week following the death of a boy friend I haven’t even seen for over 30 years! He has been in my thoughts constantly and I have been ruminating  about some of the times we spent together. I have letters and notes from him declaring undying love!  It just seems strange to me that he is no longer alive. I think the main problem is that I never got to say goodbye. My father died over 25 years ago. He knew he was dying and even planned his own funeral. I spent the last 24 hours with him and was able to say goodbye. We were able to talk about past experiences together and had some lovely memories. In a way, I have been grieving for the loss of my  mother  for months who although she is still alive she is now almost a complete stranger to me. Her memories are very few and faded and embellished with fantasies and hallucinations. On days like today I find it so difficult to understand her world.  I cannot tell whether she is happy or sad.  She sleeps most of the time and when she is awake she has no sense of her environment , time or indeed person and talks to imaginary people.

Mum has just woken up and is screaming and crying that she can’t move her legs and saying that she can’t take this anymore and wants to go home. I have settled her down and she has gone back to sleep. It is difficult to imagine how much longer she can endure this dreadful disease.

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Wednesday 5th February – the film stars!

Robert and I arrived today with the old TV from our bedroom in the car. It has been working intermittently for a few years and we have given up using it. Robert is certain it is due to the cable which he has changed and aerial and not the TV. Sadly however, this did not prove to be the case and once it was installed in Mum’s bedroom it started playing up!  I decided we really needed to buy her a new TV and Robert then started a frantic search on line for about 30 minutes. I tried to suggest that Asda in Bromsgrove might be our best bet but was met with such rebuffs that I kept quiet. Finally, I had had enough as he was unable to find any ‘in store’ TVs and rang the Asda store in Bromsgrove. They had the appropriately sized TV with DVD which was ready for collection. Robert was swiftly dispatched to go and pick one up!

Mum was not in a very good place today and was barely able to hold a conversation. She appeared to know who we were and attempted to look at more of our holiday photos but when she though the photo of me looked like a horse I began to doubt her commitment! She did however enjoy looking at the rather colourful rainbow sheep.

She refused to eat her lunch but gladly accepted a chocolate Mr Kipling cake, port and some chocolates. She said that she felt better than she had on Sunday but looked very tired and at times somewhat distressed although she denied that there was anything wrong. She dozed on and off.

Robert returned with the new TV which he set up. I don’t think Mum had any idea what we were doing or why she needed a new TV. The picture and sound were much better than her old TV but I am not sure she was aware of this.

She fell asleep for a while and woke up to tell her ‘friend’ that she was off to the cinema this evening to see a film about the courtship of Joan and Howard!  She then went on to say that she thought it would be quite a shabby film as both Joan and Howard had never been very good looking!  They would of course be in their school uniform!  ( Mum and Dad both met and started going out whilst they were at school) She then went on to tell them that she didn’t want to go home as her mother didn’t like her and her father was an ape! However she was going to Marlbrook street in Bromsgrove to hold a party!  Party on Mum!

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02.02.2020! A momentous week.

This week has been  a momentous one for a number of reasons.  75 years ago this week the notorious Auschwitz death camp was liberated. This was particularly poignant as I have just finished reading The Boy who followed his father into Auschwitz – the remarkable and haunting true story of a father and son who miraculously survived the Holocaust. There were a number of TV programmes commemorating the event, many of which included testaments from survivors of the camps. Their stories were amazingly powerful and allowed the viewers to gain some sense of their unimaginable trauma. This was in contrast to the celebrations and commiserations across the country as a result of our final departure from the EU which took place at 11 00pm on the 31st January. It has only taken 3 years to start the divorce process so goodness only knows what the next 12 months holds for us politically. Wednesday was also the date of my friend Mark’s memorial service to celebrate his life. Sadly, I could not attend as Robert , Elgar and I had taken ourselves off to Dent in Cumbria in the Yorkshire Dales for the week. We rented a three storey terraced cottage in this delightful village but sadly the weather was not kind and my intentions of going on long , bracing walks were rather thwarted by almost continuous wind and rain. We did however manage a few 3-4 mile walks and a few trips out to some of the surrounding towns but were very grateful that we had two pubs within 25 steps of our front door! Elgar was very well behaved apart from getting himself trapped behind a temporary wall under the stairs!

I drove over to see Mum today who was feeling a little sorry for herself. Sadly she had not received either of the cards I had sent her reminding her that we were away with photos of our home for the week. She was not feeling very well and ‘out of sorts’. ‘I want to go home now!’ she declared and then added ‘if I can’t go home now, I don’t want to go home at all!’

I told her about our week in Dent and showed her some of my photos – I did not take many as it was just too wet! She said that she had remembered that I had told her that we would be away and said that she had missed us when asked!

I told her about the Holocaust and Brexit but she didn’t have much idea of either of them. I do sometimes wonder if she understands what I am saying.

She then started talking to herself about how her husband always tells her how beautiful she is but that her new man doesn’t and that she doesn’t like him very much and that as he is so horrible to her that she has decided not to see him again.

I took out my laptop and decided to make a few notes to remind me what she was saying. She immediately asked me what I was writing and asked me if it was about her. ‘what do you say about me?’ she asked ‘ I bet you say that I am a miserable old bugger!’ I insisted that I would never say such a thing and that she was never miserable and asked her what she wanted me to say ‘ that I am a miserable old bugger’ she replied and laughed.

She told me that  she felt pretty miserable today. I offered her some port and chocolates that I had bought her suggesting that they would make her feel less miserable. She agreed that they would help and said that she thought she was a complainer!  ‘I have never heard you complain’ I remonstrated which is actually true. She nearly always tells me that she is fine and doesn’t want anything when I ask her.

I trimmed her nails and washed her hands for her. Sadly her left hand is becoming quite clenched and does become a bit sweaty and smelly.

Her lunch arrived but she decided she didn’t like salmon and refused to eat any of it. I reminded her that she had always eaten salmon which she denied until her carer arrived. I informed her that Mum had not eaten any of her lunch because she doesn’t like salmon any more and Mum said ‘ but I love salmon!’ She refused to eat her dessert but did manage a number of chocolates and drank her port.

She was quite chatty and told me that she would have liked to have had a nice man in her life. I reminded her that she did have one and that she was very happily married. She argued with me about this for a while but eventually agreed that although he could be awkward and had a bad temper that he was perfect and that he was a good man. She was however cross that he had gone off and she didn’t know where he was. I told her that he couldn’t help dying! he died of prostate cancer over 25 ears ago. Well, she said ‘ he was a good husband and we loved each other.’ She also talked about her father who she has always loved and her mother in law who she described as a filthy woman who never did any housework but who was very nice.

We decided to watch the rugby as England were playing France. Sadly however I could not get the TV to work and was informed by one of the cleaning ladies that it had not been working for a few days! She was upset about not seeing the rugby until she asked where they were playing. When I told her it was in France she replied ‘ well I don’t want to go and see them play there!’

I promised to try and find her another TV as I think we have one at home. ‘Don’t bother buying a new one ‘ she said. ‘ I think that one was left over from the war!’

 

 

 

 

 

 

 

 

 

 

 

Wednesday 22nd January RIP Mark

It was with great sadness today that I learned of the death of an old friend who finally succumbed to his malignant brain tumour. I hadn’t seen Mark for many years but he has always been in my thoughts and was my greatest love. I received the message whilst sitting with Mum who was not in a very good mood today! I told her of his passing but she had no recollection of him and when she learned how old he was she said how sad she was to hear the news. I shed a few tears which she did not notice.

Mum complained of feeling very tired and wanting to go to sleep. She also complained of a severe headache which appeared to vanish after a few minutes! She had numerous discussions with herself and others about various subjects including men wearing pink shirts, how much she was missed, the fact that she felt very poorly and that she wanted to get home but didn’t know how. When I tried to explain that she was already home she told me in no uncertain terms not to make up dreadful lies and what an idiot I must be!  I told her that she was in a bit of a bad mood and she replied ‘ I am in a filthy mood and I hate everyone!’

She refused to eat any of the delicious risotto because it ‘tasted so horrible’ but did manage to ingest a moderate amount of Cadburys dairy milk chocolate and drink a glass of port. ‘ Port is my favourite drink ‘ she declared. ‘ I thought your favourite was whisky?’ ‘ well I think port tastes better!’ she declared. She laughed when I suggested that the port and chocolate should put her in a better mood. She managed to eat a large bowl of trifle which is one of her favourite desserts.

We sat and watched TV and she commented on the roses  and had a chat to her friend about how lovely all her roses were. I had brought her some daffodils and she said ‘but it is a bit too early for daffodils to be out. They normally arrive in March!’  I was pretty amazed by this as she normally has no idea what month it is.

I sat and sewed a teddy bears leg. ‘ Is that a slipper for your father?’ she enquired ‘ because it does look a little small!’. I told her what it was and told her that I made teddy bears. She said that she didn’t know that! I showed her a photo of my newest bears which I had made this week.

I played her a recording of my latest piano playing which she described as ‘ very impressive!’

Most of her conversation today was fairly muddled and  addressed to her imaginary friends. I am not sure how much she can now hear properly or understand. She insists that she can hear but then asks me to repeat most things which could be a comprehension issue rather than hearing. I asked her if she thought she might benefit from a hearing aid but she felt it was me who needed one!

I sat with her for nearly 4 hours before deciding that it was time to make the long journey home. She always asks me where I am going and where home is. I told her I lived in Northampton to which she replied and I shall be on my way home soon to Bromsgrove.

I kissed her goodbye and told her I loved her. ‘I love you too ‘ she replied.

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Wednesday 15th January – where’s Angela?

We have had a very sociable and enjoyable few days. On Friday we went to dinner at our friend’s new house and on Saturday to our old neighbours new house which happened to be the old house of the friends we went to dinner with on Friday! I made the pandoro cake I had made for New Years Eve but this time I wasn’t quite so tiddly when I put it together! On Sunday my friend Alison and her husband Alan took us to Ronnie Scott’s for lunch where we were entertained by an amazing quartet and American singer who performed ‘Ella to Billie’; my favourite music – it was really wonderful. We returned from London in time to attend a party in the village held as a send off for one of our neighbours who is leaving the village for pastures new. She will really be missed by everyone but thankfully is not going too far away.  Yesterday we were also taken out to a very cosy country pub for lunch by friends for Robert’s birthday.  So, as you can imagine the January diet is not going so well!

Alison’s Mum has made the inevitable transition into her care home this week. Alison has  obviously been very anxious and upset about the move so I promised her I would pop in and say hello on the way over to see Mum today. When I arrived, Kath was sitting in the lounge with some other residents doing a quiz. I was invited to join in and between us all we managed to answer most of the questions. After the quiz was over I chatted to Kath and two of the ladies who had both been in the home for over a year and were clearly enjoying living there. We were all able to share stories of living in Bromsgrove and the schools we had all attended! I left Kath to go and have lunch with her new friends who were all then going to watch High Society in the afternoon. Kath confided to me that she was happy there as she was no longer lonely and was enjoying the company.

I drove over to see Mum arriving just as she was about to be fed her lunch. I took over from her carer but she was not feeling very well, had a chesty cough and only managed one or two spoonfuls. I fed her chocolates and cake instead and poured her a glass of port. She was a bit worried about the fact that she could no longer hold the glass herself but I reassured her that I would help her whenever she wanted a sip.

I told her about our week and the wonderful trip to Ronnie Scott’s. She appeared to have heard about it but had never been herself. She was not very talkative and appeared very tired so I lowered the head of the bed a little and encouraged her to have a snooze whilst I sat and watched the TV. She dozed on and off waking a couple of times to ask me where the dog had gone, where Hilary had gone and finally woke to ask me where Angela had gone! When I replied that I was Angela and that I was here she laughed and said ‘ but I have been looking for you.’

I left her sleeping and set back on the long journey home.

On a good note, I sent a cheque to The Lewy Body Society for £400 this week which included money from the sale of the teds and from money raised at the carol evening. Many thanks to all who contributed. I must confess I have started making some more teds this week……. my addiction continues.

 

 

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Wednesday 8th January – the Posh room.

Robert drove me over to see Mum this morning via Alcester where we both had new pairs of glasses waiting for us at Spec Savers ( my favourite adverts!)

Mum was in bed as usual but awake and quite chatty. She seemed to know who we both were but sadly had no recollection of my friend’s visit to her earlier on in the week.

We talked about and showed her our photos of our recent trip to Chatsworth House to see the Christmas decorations which were spectacular. She loved the photos and asked if we knew who lived there. We told her that it was the Cavendish family and that the Duke and Dutchess of Devonshire still live in the house. She then started talking about how it didn’t matter any more if she was on time or not as she had all the time in the world. I agreed with her but did say that it would always be polite to be on time for doctors appointments. She replied that they didn’t matter at all as all doctors were always late!

She then stated that she had to go soon. When I asked her where she was going to she said it didn’t really matter but she had to get back to where she had started from!

We gave her the coffee we had bought for he on the way and I asked her if she would like a drink. Yes please she said ‘ as long as it is whisky!’ I explained that I had only brought Port with me but she finally concluded that that would do and downed the glass in a few minutes! She then started to accuse Robert of being a bully but then started talking to an imaginary ‘bully’ who was sitting under the table.

One of her carers brought in a cup of strawberry complan. ‘That is to build you up’ I explained to which she replied ‘I don’t need building up, I am big enough already!’

I fed her some chocolate buttons and decided to play her my recent piano piece. She asked where the piano was and I explained that it was just a recording on my phone. At the end she said’ that’s crazy. They spoilt it the way they played it.’ When I managed to persuade her that it was me playing she said’ I suppose it was quite good then!’

We told her about our forthcoming trip to Yorkshire. ‘ I love Yorkshire’ she replied ‘ I stayed there for several weeks. The people are lovely there – the only real reason to go there is the people, they are so friendly.’  Robert and I recalled her telling this us some time ago that she had been to stay with an Aunt in Yorkshire before she was married. She recalled this but could not remember the name of her Aunt.

Her lunch arrived – a rather unappetising plate of a few scampi, chips and peas. She only ate one mouthful but could not chew it and refused any more. She did however enjoy a few more chocolate buttons and some peaches and cream. I asked her carers if she could have a glass of whisky which they duly arrived with. She wasn’t too keen on it to start with and said it didn’t taste like whisky.  A little later I asked if I could get her anything      ‘ What could you possibly get for me she ? !’ she answered rather scathingly  ‘ whisky and chocolate? ‘ ‘Wonderful ‘ she replied!

After lunch we all settled down to watch TV but she suddenly complained of feeling too hot. I removed her warm furry throw and encouraged her to try and move her legs but she couldn’t. She started talking to an imaginary friend saying that she needed to go now! I am not sure if she meant to the loo or not but after a few urgent protestations she settled down. I tried to stretch her fingers but she found it too uncomfortable and told me to stretch my own fingers!

She appeared to watch some of the TV programmes but couldn’t really take in much of it. ‘I would like afternoon tea!’ she suddenly stated ‘ but I can’t have it in here. This is the Posh room. You can drink in here but not eat!’

She chatted a while to some imaginary friends mainly about the fact that she had lost her hat in the river and wanted someone to fetch it back for her. This reminded me of the story I had read this morning about a lady rescuing a dog in the river who had a rock tied to it. I told Mum about this and she said ‘ what type of monster would do such a thing? ‘ Indeed.

As we got up to leave , I told her we were off to buy fish and chips for tea on the way home.’ I have some money in my handbag for you to buy them with’ she kindly offered.

I kissed her several times until she shooed me away!