Wednesday 20th September

I don’t generally throw my arms around complete strangers and tell them I love them but yesterday I did just that, and I was sober! The emotional out burst occurred in a very busy NHS hospital car park. I had spent over 40 minutes driving round and round and finally had a complete meltdown. The recipient of my emotional embrace was a charming car park man, who,  clearly realising that he was dealing with a neurotic menopausal woman on the verge of a complete breakdown found me a free parking space in front of the private hospital! I was at said hospital trying to visit a friend who had been admitted for a fairly routine operation, expecting to be in for 3-5 days but was now facing a 3 weeks sentence at least!! He has sadly had few visitors and now I know why!! I expect a number of them just gave up looking for a parking space and drove home again. Anyway, it did make me wonder how people with dementia cope in these type of circumstances. One of the car parks I was directed to by another well-meaning car park man was long and thin with cars parked on both sides but with no exit and only one entrance which was barrier operated!! Once in, it was very difficult to get out! I did wonder if I was going mad at one point but a number of other drivers got out of their cars and we were all scratching our heads together and had to stop cars entering to enable our exit even though none of us had managed to find a parking space.

Anyway, I digress. Robert is away sailing again this week so I drove over to Mums by myself. I listened to a comedy series entitled Relativity on radio 4 during the journey which is normally very funny but in this episode the family made the Christmas visit to Grandmother in her care home. I must say I shed a few tears during the journey!

I arrived at mid day and Mum was sitting in her chair in front of the TV.  She appeared to know who I was but had no idea of the day ( Saturday?) or the month ( March?). When I told her it was September 20th she did remember that it had been someone’s birthday yesterday. My father would have been 90. I chatted to her about my week and the dreadful hurricanes in the Caribbean and the earth quake in Mexico but I am not sure how much she took in. I redid her nail varnish and gave her a glass of sherry before lunch arrived. I helped her eat her lunch and then gave her one of Mr Kiplings french fancys before her dessert arrived. We watched the BBC news and she asked me a few times if the earth quake was in Mexico.

We also sang a few songs from the first world war which I have been learning with my choir. She was able to sing along to ‘My Old Man’, ‘Mother Kelly’s doorstep’ and ‘The boys from the old Brigade.’

Her pudding arrived but after a few mouthfuls she suddenly grimaced and declared that she needed the loo. I called for the carers who arrived within 5 minutes but unfortunately it was too late. We somehow managed to get her on to the commode and they then sorted her out.  I will not say any more apart from the fact that liberal doses of Chanel number 5 were employed and it was not long before she was back in her chair.

I tried to get her to understand how important it is to try and exercise her legs as much as possible and to try not to sit with her right foot so inverted but it was a bit like talking to a brick wall. She does not have the capacity to understand that she cannot stand or walk and indeed told me that she had been going to go for a walk down town this afternoon!

Having listened to the radio programme earlier I decided to try out some of their mental exercises they tried with ‘ Grandmother’. I told Mum we needed to exercise her brain. “can you add 10 and 5?  ”  “15” she replied in an instant. ” How about 3 x5?” I asked. ” 15″ came back the reply. ” 9X9?”  “81” she replied but then suddenly became very sleepy and her eyes started to close. I realised I had worn her out!

Maybe we will do some more exercises next week.

 

 

o

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Wednesday 13th September

I drove home from seeing Mum last week in a reflective mood. It was the first time that she had not recognised me and I had not handled it very well, resulting in distress for both of us. It is difficult to put into words how upsetting it was to realise that your mother does not know who you are. I telephoned the home the following day to see how she was and if they had managed to obtain a urine specimen. I spoke to one of the carers who told me that they had been unable to test her urine but that she had told her that her daughter had been to visit.

Robert and I both went over to see her today. She was fast asleep in her chair with her plate of lunch in front of her and also had a mouthful of food !  I woke her gently and she looked at me and smiled. I motioned to Robert and said ‘ look who I have brought to see you today. ‘ Ah’ she said ‘ It’s Robert’. Realising that she appeared to know who we were I asked her if she knew my name. She was slightly indignant and said ‘ Angela of course!’. I explained that I had asked because she had forgotten who I was last week. She laughed and replied ‘ My memory comes and goes’.

She was obviously very tired and had a rather chesty cough.  She did not want to eat her lunch but devoured a large bowl of tiramisu for pudding!  She chatted a little to her self and told me that she had been to a market to buy some furniture. I asked if anyone else had gone with her but she replied ‘ oh no, I went by myself – which meant that no one else could tell me what to buy!’

I had taken my laptop and showed her all the photos from our recent weekend away in Weymouth. She commented on some of the photos and seemed to know Chesil beach and the lighthouse at Portland Bill. She soon became very sleepy and dozed on and off whilst we sat and watched the TV.

She suddenly woke up, grimaced and announced that she needed the loo but did not want to use the commode. I rang for the carers to help and they arrived within 5 minutes. She then announced that it was a false alarm and they left promising to return if we needed them.

She then fell asleep whilst we sat with her and watched the TV. After a while she suddenly woke up with a cry and sounded very dismayed. When I asked her what she wanted she said that she was really uncomfortable in her chair and wanted to go to bed. Robert and I managed to get her onto the bed from her chair and tried to make her as comfortable as possible. This is pretty difficult to do as her legs are so bent and her poor back is really scoliotic. She claimed to be comfortable and fell fast asleep.

We decided to  leave her to sleep and informed the carers on the way out that we had put her to bed but that she probably needed changing.

On a positive note, my friend Alison and I joined thousands of others to complete The Memory walk around London on Sunday. Thanks to our many wonderful and very generous friends we raised over £2400 for The Alzheimer’s society. It was a great day but very sobering to see how many people were walking in memory of loved ones who had succumbed to this devastating disease. We can only hope that one day there will be a cure for this cruel and life robbing condition.

 

 

6th September . Happy Birthday to …?

The morning started off fairly well. Robert had driven up to see his Mum yesterday to take her for an appointment to have her eye injected and had stayed overnight. I woke up early and phoned my twin sister in Tasmania to wish her Happy Birthday. We had a good long chat following which I finished all the ironing. Things were then looking up when a friend popped round with some flowers and a birthday card which contained a cat face mask! I know what you are thinking but I really am that mad cat lady!

I drove over to see Mum in high spirits and stopped to buy a lemon cake on the way. She was still lying in bed fully dressed in a rather inelegant position with her head up against the wall. She told me that she was comfortable and had not wanted to get out of bed! I rearranged her pillows and made her as comfy as I could and informed her of the date and that it was my birthday. It took her a little while to take it in but she then stated quite rightly that she always used to remember people’s birthdays. I cut the cake and we both ate a slice and I told her about our recent weekend trip to Weymouth. She had some recollection of a trip we had been on many years ago and the hilarious visit to the Swannery.

Lunch arrived and I fed her a few mouthfuls whilst she lay in bed before suggesting that she might wish to sit in her chair for desert. One of the carers arrived and we managed to stand her up and pop her into her chair. She was slightly vacant and I have to confess that there was quite a  strong smell of urine which made me think that she might have a UTI. She chatted to herself for a short while and agreed to a sherry which she then proceeded to knock over not once but twice! We laughed about it and on pouring the third glass I informed her that this would be the last one!

I sat with her for a couple of hours but she was very quiet. I told her that Robert had gone to visit his Mum but she had no idea who Robert was! I then started to question her further only to find that she had no idea who I was either! I informed her that I was her daughter and that it was my birthday today to which she replied ‘ Many Happy Returns’ . She showed no recognition when I mentioned Jude and when I asked her if she had ever seen me before she  looked at me quizzically and answered no.  She was quite distressed at her own confusion so I told her not to worry and that I was sure she would know who I was next week. Interestingly she then asked me if I had any family. When I answered no, apart from my sister Jude in Australia she looked at me and said ‘ but if I  am your mother then you must have me!’ Bless her.

I decided to leave as she was obviously very tired and I was finding it all a bit emotional. This is the first time I can remember that she hasn’t known who I was.

I left her to rest and went downstairs to find one of the carers to see if they would test her urine to rule out a UTI.

 

Wednesday 30th August – Away with the fairies!

For anyone who is interested, The Alzheimer’s Society facebook page is doing a live Q&A session at 12 30pm tomorrow with a researcher who specialises in Dementia with Lewy bodies – should be interesting.

Robert and I drove over to see Mum today in the rain with the car thermometer registering an outside temperature of 13 degrees! This was in marked contrast to the previous bank holiday weekend which was surprisingly warm and sunny.

Mum was chatting away to herself when we arrived. She was talking to ‘someone’ and telling them she had been married and divorced 4 times! She was now living with the manager of Rubery football team. I listened for a few minutes and then made her aware of our presence. ‘Do you know any footballers? ‘ I asked ‘No’ she replied ‘Do you?’

I noticed that she was wearing make up and also that she had lost another of her front teeth which I then found on the carpet next to her. ‘ I managed to hit myself in the mouth’ she explained. ‘ The tooth fairy will have to come and turn it into fairy dust’ I replied and we both laughed.

Her lunch arrived very shortly after we did so we sat with her while she ate it and Robert joined her in a glass of sherry. We chatted away about the week and I told her about the restaurant in Bromsgrove that I had gone to with Alison, Alan and Alison’s Mum Kath who has Alzheimers. We cooked our own food on very hot volcanic rocks which were placed on the table. It was great fun but a little scary!!

After lunch we told her about the amazing Fairy House Trail which had been put on in our village on Sunday and Monday to raise money for the church.  One of the ladies in the village had made all of the houses herself and they really were exquisite. Everyone helped , either by making cakes, serving teas or helping with the car parking. It was estimated that over 2500 people turned up! Robert and I had walked the trail in the morning and taken photos of all the houses to show Mum. She really loved looking at them all and also remembered that when we were little we had a little fairy in our garden called Felicity who lived in the forsythia tree. I asked her if she had ever seen her to which she replied ‘ I don’t think anyone had ever seen her.’

After she had seen all the photos she suddenly announced that her father was very ill and that she needed to go over to the hospital to see him before he died. I tried to explain that he was not in hospital and that he had died many years ago but she could not be convinced! She then told someone that she now had a new job working for British Gas and had to get up every morning at 6 00am. She then said that they were trying to get her to live in London but she didn’t want to go.

I tried to change the subject and engaged her in conversation about the cricket. ‘ Never underestimate the West Indies’ she said wisely.

She then told us that someone had told her that Bromsgrove school had been bombed at 6 00am today and that 25 of the students had been killed. It was particularly sad as the headmaster was supposed to be getting married today! Again, I tried to tell her that this was very unlikely and that it would have been on the news if it were true. ‘when did you last see the news?’ she asked. I told her I had watched the morning TV to which she replied ‘ then who would make up such terrible news?’  who indeed!

I changed the subject again and proposed that we all did a crossword which she readily agreed to. For the first 30 minutes she was really engaged and came up with some great answers.

She suddenly became very distressed again as someone was telling her how ill her Father was and that she had to get to the hospital. Again, I tried to convince her otherwise but she would not have it and then she was told that he had died. Shortly after this he rallied round and was getting much better!! She then started talking about someone who was called Bill. She was going out to meet up with him for a picnic later but said that if he didn’t turn up that she would go home and cry herself to sleep!

She then continued with the conversation about her father dying. At times however he became her husband who was dying and one she had either been married to for 24 years or 24 days! ‘must get to the hospital and you should take Angela with you as she has worked in hospitals and will know what to do.’ Long discussions then took place as to how and where she was going to get there.

It is  interesting that when her father died, he did die in hospital but she didn’t manage to get there in time arriving minutes after he passed away.

She then suddenly looked at her wall and said ‘ Angela, can you see the bags hanging on the wall?’ I told her that I couldn’t to which she replied ‘ Of course you can’t! They are just in my imagination!’

We sat with her for about 3 1/2 hours – it is such a curious illness – she seems to flit in and out of her delusional life as if someone is playing with a switch. On one occasion when she was in full rant I clicked my fingers and she suddenly stopped and looked at me and for a few minutes seemed quite normal!!

 

August 26th – Just call me ‘Ink Spot’

I had a lovely drive over today – the sun was shining and the traffic was not too bad considering it is a bank holiday weekend. My Man Flu is very much better although I am still a bit ‘snotty’!  Mum was also a bit ‘snotty’ but in very good spirits. She was chatting away to herself when I arrived but stopped as soon as she saw me and beamed a big ‘ hello’. I was pleased to see that her flowers were still blooming and looked beautiful. I commented on how well they looked especially as I had bought them over a week ago but Mum had no recollection of my bringing them and was surprised to hear that she had had them so long. She had one of her teddy bears on her lap – a rather odd looking black and white one which she had been given last year. She thought that he was a new addition and when I asked what his name was she said that he didn’t have one. I decided that we should name him but then noticed that he had a label attached to his collar. ‘He is called Ink Spot!’ I informed her. We both laughed. Through the course of the afternoon I asked her if she knew his name about 5-6 times but sadly she had no recollection.

Her lunch arrived shortly afterwards and she managed to eat all of her fish and chips complete with mushy peas ( yuk!!). She was able to feed herself and then managed a whole bowl of lemon meringue pie and a small Battenburg cake which I had brought her. I was really pleased to see that her appetite has improved.

We chatted about the previous week and I told her about the cricket match at Edgbaston and showed her some of the photos. She was particularly interested to hear about the ‘walk about’ from some of the old players and remembered Bob Willis, Mike Brearly and Viv Richards.

One of the ladies in our village is putting on a ‘fairy trail’ this weekend. She has spent countless hours making the most beautiful fairy homes I have ever seen and is spotting them through the village as a fairy trail in order to raise money for the church windows. The BBC has made a small video to display some of the houses which I showed Mum who really loved them. The video has however attracted over 20000 viewings!! so we are all waiting to see how many folk turn up! I have volunteered to make fairy cakes and be on standby if any more help is required.

After lunch Mum suddenly looked at one of her framed photos of my Dad on the window sill. Who is that she asked?  I took the photo over to her and she said ‘ oh, yes it’s our dog ( he is on the photo). She couldn’t quite recognise Dad as the photo has faded a bit and it was taken when he was very ill towards the end of his life. When I told her who it was she knew straight away. I also pointed out another photo of him that she has when he was very much younger and looking very handsome. She told me it had been taken professionally as the whole family had employed a professional photographer to take their portraits. ‘ He looks very handsome’ I said ‘ a bit like Errol Flyn ( Mum’s idol). ‘ Not quite’ she replied and giggled ‘ Errol Flyn was the most handsome man in the world!’

I decided to take a photo of her to send to my sister Jude in Tasmania. My first attempts made her look very pale so I decided to have a make up session with her and took some lovely photos afterwards – even she was pleased with the results.

I left her cuddling Ink Spot and drove over to see my friend Alison’s mother Kath via Webbs ( a wonderful garden centre) where I bought some fairy cake decorations!

Kath was sitting in the garden with Alison and we had a lovely chat about their recent holiday in France. She had been given a photo album of the holiday so that she could remember where they had been. Sadly, her short term memory is now very poor but she was still able to tell me lots of stories from her past.

In the evening we all went out to a lovely restaurant called ‘on the Rock’ where all the food is served on extremely hot pieces of lava!! We all cooked our own steaks and had a lovely relaxing evening. I doubt Kath will be able to remember much about it tomorrow but I know that she had a good time.

23rd August

I have decided not to visit Mum today as I am still recovering from a rather unpleasant virus which actually sent me to bed for a couple of days. Robert has gone off sailing and I have been feeling very sorry for myself. It made me realise how awful it must be for people with chronic illness who can see no end to their suffering.

As I am feeling so much better this morning I will visit Mum on Friday and then visit my friend Alison’s Mum who lives a few miles away. Alison’s Mum has Alzhiemer’s dementia and is still managing to live by herself with her son in law who lives next door as her full time carer. Alison lives and works in London but still manages to visit her Mum on a regular basis and they have just returned from a 2 week holiday to France.

This blog is now going to turn into a plug for ‘The Memory Walk ‘ run by the Alzheimer’s society to fund research into this devastating disease.

Alison and I have joined together to form the A team and are walking with many others in London on Sunday 10th September. Our friends have been very generous and so far we have raised over £1300!

For more information about The Memory Walk  and information concerning donations please follow the link to our Just Giving Page

https://www.justgiving.com/mw199937?utm_source=Sharethis&utm_medium=fundraisingpage&utm_content=mw199937&utm_campaign=pfp-email.

JustGiving sends your donation straight to Alzheimer’s Society and
automatically reclaims Gift Aid if you are a UK taxpayer, so your
donation is worth even more.

Thank you for your support!

 

 

16th August – a Good Day.

It’s official! this has been the coldest August on record for 30 years!

Robert has disappeared on his motorbike with some chums for a couple of nights leaving me to look after our builder who has been repairing our rotten conservatory – a very pleasant man and he has done an excellent job but my he can talk for England!

I had a lovely drive over to Mum’s today and stayed with her for just over 3 and half hours. She was lying in bed asleep when I arrived but was fully clothed and had had her hair permed. Her left had was much improved with almost no swelling.  She woke up straight away and told me she had been a bit cold and asked me to close the window.  She asked me how our holiday had been and I had to remind her that we had seen her after the holiday and shown her all our photos. She had little recollection of our visit last week but did remember that we had been to Glyndebourne. I then told her about my week and the chatty builder which made her laugh. She also looked out of the window at the cumulating rain clouds and said ‘ beautiful weather for August’ and laughed again.

We chatted about the recent world athletics and she appeared to know who Usain Bolt was and was thrilled to hear that our men had won the gold in the 100m relay.

I told her about my piano practise and she reminded me of our church organist Marion Rae when we were little. I told her that she had died many years ago but she was insistent that she was still alive even though she would now be about 120!

I had bought her some flowers and the daily paper from the local shop but unfortunately her vase was missing. She was thrilled with the flowers and asked what they were called. ‘alstromeria ‘ I replied but she was not familiar with the name. I gave her a sherry which she drank before her lunch arrived. ‘This is my favourite type’ she said. I fed her with a fork whilst she lay in bed and then afterwards we had a go at tackling the crossword. She managed to stay awake for the first 10 minutes but then fell asleep. After a little while she suddenly woke up and declared that she needed to go to the loo. I told her that I would need to call the carers to help me put her on the commode and surprisingly she did not object. One of her carers arrived within 5 minutes and we were able to roll her out of bed with her poor flexed knees and stand her up momentarily whilst we popped her on the commode. We decided to leave her there for a while so I popped down to the kitchen and managed to retrieve her vase for the flowers. I returned and arranged her flowers in the vase before summoning some help to remove her from her throne.

Two lovely carers arrived and sorted her out before popping her into her chair. She had another snooze in the chair whilst I read the paper.

When she woke up we had a lovely chat about her previous homes. She was especially fond of her childhood home East Lynne and told me how sad she was when she had to move because of her father’s job at Barnsley Hall. Her long term memory was surprisingly good and she remembered that her Mum had given her the money to build the house at Braces Lane where we had lived as children. She talked about my Granny Dancocks and how she was a lovely lady but very lazy and never did any housework but was always making things such as teddy bears and dolls. She and Dad had lived with her for a while but Mum said she was very pleased when they were finally able to move out and into their own home as she often came home to a sink full of dishes after work.

As I was leaving I asked if she needed or wanted anything. ‘ I just don’t want to live in this god damned awful place’ she replied. ‘ It’s lovely here Mum, I replied ‘ you are very well looked after and any way , you could be in a much worse place – think of all those poor people living in a mudslide in Sierra Leone’. She had to agree. I kissed her goodbye and told her I loved her ‘ I love you too’ she replied. I went to pick up the paper to take with me. ‘Leave that’ she commanded ‘ I haven’t read it yet!’