I have learned this week that Amazon will donate 0.5% of any purchase to the charity of your choice if you sign up for smile.amazon. All you have to do is to remember to go through smile.amazon when you wish to purchase something from Amazon. Robert and I have both signed up and requested our chosen charity to be The Lewy Body Society. It is very easy to do and can only benefit the charity of your choice.
This week I have found a new hobby! I have been suffering from chronic back pain for years and have finally decided to try and do something about it by starting to practise yoga! This came about whilst shopping in Sainsburys where I spotted a book on yoga for beginners. I bought it and started doing some of the exercises on a daily basis. After the first two sessions I was aware of some very mild improvement in my symptoms! I have now down loaded the NHS video ( 45 minutes) and have already followed it all the way through twice! Not surprisingly my back is a bit sore today as I have put it through moves it didn’t know it was capable of, but I am hopeful that by continuing on a regular basis that there will be long term benefits. My poor Mum has had terrible problems with her back over the years and developed a very severe kyphosis which has certainly not helped her mobility issues. I suspect that this is partially why she is now bedridden.
Robert drove me over today although I did try to persuade him not to. I quite enjoy the solitude and radio 4 during my drive over! He was however adamant, stating that he hadn’t seen Mum since Christmas and that she probably wondered where he was. Of course, when we arrived she had no idea who he was! I explained to her that he was my husband and she scolded me for not telling her that I had got married. Robert informed her that we had been together now for 26 years!! She found it very hard to believe and laughed at herself for not knowing.
She looked very tired but managed to stay awake for about an hour whilst we chatted to her about Brexit, our week and our forth coming holiday. She doesn’t have any idea what Brexit is ( who does?) but did feel we should go and help Teresa May if she needed us!
I gave her a small glass of her favourite orange liquor and two Mr Kipling frosty fancies which didn’t last long. This was in contrast to her lunch – she only had one piece of scampi and half a chip which took her over 30 minutes to chew and swallow.
She asked me a couple of times who the lady was who was in the room with us and also stated that she wanted to walk home. When Robert asked her where ‘home’ was she told him it was none of his business! When I asked her where it was she told me not to be so stupid!!
The electricity engineers were outside when we arrived and the home was being powered by a generator. Half way through our stay the electricity went off for a few minutes resulting in all sorts of sirens. We were able to reassure Mum what was happening. I am not sure that the lady next door knew as she started screaming!
We stayed for just under 3 hours and then made our way home to ensure that Elgar was OK – he had to have a tooth out yesterday which necessitated stitches and is feeling very sorry for himself.
I left 2018 on a bit of a dismal note having spent 90 minutes trying to get through to a GP surgery. I had promised an elderly neighbour I would make an appointment for him and then accompany him to his GP. I started phoning at 8 am on the dot only to be met by a continually engaged tone. After trying every 2-3 minutes I finally got through and spent another 10 minutes listening to various messages. I eventually spoke to a lovely human who informed that if I needed an appointment on Friday I would have to ring on Friday morning! After a short discussion she eventually found me a ‘double appointment’ in 30 minutes time! We rushed down to the surgery only to be met by a very over worked GP who proceeded to tell us how bad his job was! He himself was unable to help my neighbour but did call in a colleague with more experience who promptly arrived and sorted us out! Surly the NHS should be able to function better than this?
2019 started on a high with friends bringing the year in at a wonderful house party in Norfolk. This began with a fully catered black tie dinner and ended with a very enjoyable murder mystery party.
I dropped Robert off at the station this morning as he was off to see his mother whilst I drove over to see Mum. It was dull and raining when I arrived. She looked out of the window from her bed and declared that it looked far to horrible for her to go on her walk to Catshill. I agreed that it would not be a good idea and asked where she was going. ‘ To see Aunty Doll’ she replied. ( my Grandmother’s sister.)
I wished her a Happy New Year and proceeded to tell her all about our celebrations. ‘ I have never been to Norfolk’ she stated and then asked me where it was. She seemed to enjoy looking at all my photos and said that the murder mystery party looked like fun.
Her lunch arrived and I poured her a small glass of whisky. She managed to eat a few mouthfuls and drank all of the whisky asking if she could have some more. I gave her a small battenburg cake I had bought for her which she enjoyed following which she fell asleep.
I sat next to her making another teddy and watching the TV. After a while she suddenly woke up and asked me if I had killed a dog! She then started talking to an imaginary person to her right telling them how ill her father was and that he was now in hospital. She went on to say how ill he was and that she wished she could bring him home but knew that the hospital would not let her see him. I tried to talk to her but it was difficult to break into the conversation.
She fell asleep again waking only to ask if she could have some more whisky!
On a positive note, I sent a cheque to the Lewy Body Society this week from the profits made from the sale of some of the teddys and donations from the carol evening we held at our cottage. Thanks to every one who contributed or bought teddys. I am continuing to make the teddys and have had more enquiries and requests which is wonderful. Please get in touch if you know someone who would like a little teddy. All the profits go to help fund research into this devastating disease.
Robert returned home from the barbers yesterday looking at least 10 years younger following the loss of his Father Christmassy beard! Our friend Vernon, turned 60 on boxing day and is coming to terms with the relentless aging process. He does not have any hair to shave off so he is very kindly celebrating his Big day by inviting several of his and his wife’s friend to a large house in Norfolk for a few days to which we have been invited. We have been busy accumulating costumes for the murder mystery evening and attempting to squeeze ourselves into Black tie attire for the New Year’s eve party. Why ever did I eat all that Christmas cake?
With all the excitement and entertainment coming up tomorrow I decided to drive over to see Mum today to wish her a Happy New Year. Yesterday, I spent a very soulless 3 hours waiting in the waiting room of our local A&E department with an elderly neighbour who was seen and dismissed within 5- 10 minutes once we were actually seen by a clinician with advice to see his GP later on in the week. Today I spent another 3 hours sitting by my Mum’s bedside, trying to persuade her to eat some minced up roast beef followed by chocolate brownie and cream. She was very tired and not very communicative.
I do now find myself looking at my Mum and at times failing to recognise her at all. My Mum has slowly disappeared over the last few years and seemingly replaced by a shell of a human being who lies in bed, is unable to do anything for herself and very occasionally makes some sort of contact with reality. Today she had a conversation with an imaginary person about her little dog who had apparently run away. She was very concerned for his safety and told her friend that he would now have to spend his day in a kennel once he was found!
I find it difficult to offer her any comfort or help other than her favourite glass of whisky which appears to be her only pleasure in such a small , restricted existence. I am sure that within 10 minutes of my departure she has no recollection of my visit. To us it seems utterly despairing that someone’s life could terminate in such an existence. I take comfort in the fact that Mum does on occasions tell me that she has been shopping / visiting her mother and going out with my father. I can only hope that on New Years Eve she is out partying – at least in her dreams. Happy New Year Mum xxxx
Robert drove me over to see Mum today for Christmas lunch. We took a bag full of presents but forgot to take the tins of chocolate for the staff! I must remember to take them over the next time I go.
We woke to a cold and frosty morning which soon changed into a damp and rather merky day. My lovely step son and his Spanish girlfriend came to stay over the weekend. Poor Marina was supposed to be in Spain with her family, but a certain ‘drone’ at Gatwick put paid to her plans. It was lovely to see her, so their loss was our gain. I cooked turkey etc on Saturday night and dragged them off to a carol concert I was playing in on Sunday and we went for a lovely walk yesterday.
Mum’s carers had managed to get her dressed for the occasion and put some make up on her but sadly could not get her out of bed. They had very kindly set up a small table in her room and brought up lunch for all three of us. I opted for the salmon whilst Robert and Mum decided on the turkey.
I had taken some of Mum’s favourite Christmas music with us and she sang along to quite a few of Jim Reeves songs. The Jim Reeves Christmas album has been a tradition in our family going back many years and always reminds my of my lovely grandparents who loved Christmas.
Robert, who is now sporting a full bushy ‘father Christmas’ beard donned a hat and T shirt and joked that he was the son of Father Christmas. Mum has a beautiful picture on her wall of a very jolly Father Christmas who she told us was her ‘ideal man’. ‘He has such a smiley face’ she said.
I managed to feed Mum a few mouthfuls of her lunch and gave her a glass of whisky and then we settled down to open the presents. My sister also bought her a large bag of presents so the present opening lasted quite a long time. Because of her hands she couldn’t open any of the presents herself but enjoyed watching us. One of her favourite presents was a talking duck which recites Nursery rhymes! It really made her chuckle!
I think she realised that it was Christmas and when Robert made a bad joke about ‘bubbles in the bath’ by Ivor Windy bottom – she laughed and told him how funny he was and was obviously related to his father!
She drifted off to sleep and woke up to eat her favourite pudding but said that she felt ‘exhausted’. We left her snoozing surrounded by all of her new gifts and drove back along virtually empty roads.
Merry Christmas Every One.
Last night we held our annual carol evening at our cottage. We have been doing this for a number of years now and many of our neighbours tells me it heralds the start of Christmas. Last night was no exception and 30 plus friends and neighbours, sang, drank and made merry. We also raised £150 for the Lewy Body Society – thanks to everyone for their generous donations with special thanks to my friend Gaynor for taking on the roll of bar manager and to Caroline and Gordon who joined me to make the music! I have been informed that my fiddle playing has finally improved!!
I drove over to see Mum today leaving Robert to clean up the house, return all the glasses and marzipan his Christmas cakes. She was asleep when I arrived and dressed in a woolly jumper and skirt whilst lying under her duvet in bed. I woke her up and she appeared to recognise me. I told her about the carol evening but she was rather sleepy and I am not sure how much she really took in.
I sat with her for about 3 1/2 hours but she was not very communicative and refused most of her lunch. I did manage to tempt her with some small home made shortbread biscuits, a mini mince pie and several Roses chocolates. Not very nutritional but she did enjoy them!
I manicured and painted her finger nails on her right hand but her left hand is now too clenched to apply any nail varnish.
She slept on and off whilst I sat by her side making yet another teddy bear!! My friend Julie has commissioned one of the little dark teddies which I have sold out of but still had enough mohair to make one more.
She woke up just as I had decided to leave and I rang Robert at home so that she could have a chat to him. She actually had quite a normal conversation and we both promised to be with her for lunch on Christmas day.
On the way out, I was stopped by one of Mum’s carers asking if she could buy a little bear for her new grandson!
I drove home in the dark and then headed off with our neighbours to the village Church carol concert and more mince pies!!
This weekend was the Christmas tree fair at our local church. It was advertised as tea and cakes and Christmas trees so I was not really expecting to sell many teddies. However, I set up my Christmas tree with some of my teddy decorations and some of the little teds and put the bigger bears on display with leaflets from The Lewy Body Society. It proved to be a very successful event for the church with may local walkers stopping by to view the trees and sit down for some tea and taste some of the yummy cakes on display. I was able to talk to a number of folk who stopped at my tree about Lewy Body dementia, none of whom had ever heard of it. One lady quickly realised that one of her neighbours displayed all of the symptoms and another realised that her father also probably had it. I also managed to sell a few of the decorations and some of the little teddies which was great. I also received lots of compliments about the bears with one or two people liking them to Steiff bears – really lovely to hear!
One of Mum’s carers had told me that she wanted to buy one of the little bears so I took a selection of those that were left into Mum’s care home today and ended up selling 3 more bears! Thus I am now on my way to making my second £300 for the charity which is great news.
Mum was not in a great place today. She was asleep when we arrived and looked tired and dehydrated. There was a cup of cold coffee on the table in front of her. I woke her up gently and offered her the coffee we had bought from the local shop which I helped her to drink. She was soon awake but looked very tired. ‘ Can I tell you a secret?’ she asked me conspiratorially. I wondered what she was going to tell me and then whispered ‘ I can no longer get of bed. What do you think of that?’ I told her that I thought she was in the best place as it was very cold outside. She then went on to tell me that her boyfriend from school and visited yesterday and sat by her bed for 2 hours. She couldn’t remember his name but it had obviously been a very happy visit!
I gave her a Christmas card from us and also a beautiful card my sister had made and had sent from Tasmania. My card said something along the lines of the best Mummy in the world – to which she added ‘ and the best whisky drinker!!’
She then asked me if I had seen my Uncle Jack in Bromsgrove recently as she had been told he was back from Australia. I told her that he had died over 40 years ago whilst he was living in Australia. ‘ Ah, so it couldn’t have been him.’ she replied.
She then declared that she wanted to find a rich man! I told her that money wasn’t everything and that I had never managed to find one. She replied that I was definitely wrong but that there were not many in existence.
Her lunch arrived and she managed a few mouthfuls along with her usual glass of whisky before falling asleep. Sleep dreams Mum!
‘It’s beginning to look a lot like Christmas.’ I have already decked the halls and put up two of our Christmas trees and am now feeling in the Christmas Spirit. I drove over to see Mum in torrential rain but was warmly welcomed by a home full of beautifully decorated trees with a beautiful nativity scene outside in the small interior courtyard.
Mum’s room looked very Christmassy. My sister had brought in a small tree and decorated it with some of Mum’s favourite decorations. Mum looked very cosy snuggled up in bed and I thought she might be in a Christmassy mood. I chatted to her about Christmas but she soon corrected me and told me that it was now all over! She then started talking to her imaginary friend who agreed with her that Christmas had been and gone and that I was wrong! I pointed out that it was only December 5th and she seemed to step down a little in her dogged belief when she told me that Christmas was on the 25th.
I sat down next to her and started to knit a new scarf for one of the little teddies. I am not the best knitter in the world but reminded Mum that she used to do lots of knitting for us when we were children. Interestingly she had full recollection of knitting us all skirts and could not only remember the round knitting needle she used but also the colours of all of the skirts.
She drifted in and out of her own world and had a long conversation with her mother about how Bromsgrove used to be famous for making glass. ‘ I had not heard that’ her mother replied. ‘ Well you need to get your hearing tested’ came back the reply!
Lunch arrived – a lovely looking chicken casserole which Mum said she didn’t like. I coaxed her in to eating a few mouthfuls by promising her a glass of port after she had eaten lunch. I soon gave in and she downed the glass of port in a few gulps!! After her pudding arrived which again she declined she asked if she could have another glass of port. I told her that I didn’t think that would be wise as she had not really eaten very much. She suddenly became very angry, told me I was stupid and then asked me to leave and never come back!! I was a bit stunned and then realised that it is her way of having some sort of control of her life. I sat down in silence for a while and did some knitting. After a while I poured her another glass of port which she accepted gracefully.
I only stayed for 2 1/2 hours as the weather was looking much worse, Mum was very sleepy and I am not a fan of night time driving. I kissed her goodbye and asked her if she still loved me. ‘Of course I still love you’ she replied. I left her with the remainder of the port bottle.