July 6th – Freedom at last

It has been a funny sort of a week. Shops are now open and pubs, restaurants, gardens and some holiday homes are now open! Sadly, there is still no mention of care homes opening to relatives.

Many people appear to be opting to stay in doors for the time being but the young people are now out and about and making the most of their new found freedom! That is, unless they live in Leicester who have been put back in lock down before they were open! Sadly, this included my friend and her family with whom we were supposed to meet up on Saturday to visit Nevill Holt gardens. We were able to invite some other friends at very short notice and we all enjoyed a surprisingly dry visit around these beautiful gardens. Two of our party are very keen gardeners and enjoyed chatting up the head gardener ( he was quite cute!) On the way back we visited the Welland Valley to look at the amazing viaduct! ( We only found out about this a few days ago courtesy of a village zoom quiz!) We also stopped in to visit an old work colleague – she and her husband had just returned from a trip to Brussels and were both isolating for 2 weeks as a consequence!

Earlier in the week we had stopped round for coffee with some friends in the garden and following a conversation about The Repair Shop on BBC TV I was given a treasured teddy for me to have a go at repairing!! Thankfully, it was not a difficult job as some little boy had removed his eyes many years ago which meant there was access available to restuff him through the vacant sockets!! I think I did a pretty good job! I re stuffed his head and nose, gave him two new eyes and a mouth and a general wash and brush up! So, Teddy Edward who is over 60 years of age emerged from my Teddy clinic looking very chipper! I enjoyed the challenge so much that I am thinking of setting up a Teddy Bear Clinic in Teddy Towers with donations to the Lewy Body Society!

I Skyped Mum today to tell her our news. She was quite bright and looked pretty good. She had had her hair washed ( apparently in bed this time) and had been enjoying the cakes and chocolates I had sent her this week in an emergency parcel! I managed to chat to her for about 30 minutes during which time we sang quite a number of her favourite songs. I told her she should make a recording to which she replied ‘ I’m not Bing Crosby, you know!’ She told me she loved me and blew me several kisses and we both expressed a need to hug each other. Just as we were about to finish she asked me if I had heard from my sister Jude who lives in Tasmania. Sadly Jude was going to be flying over in August to spend a few weeks with us but has had to cancel her plans due to the corona virus. I do hope she manages to come over soon.

Wednesday 1st July – let’s sing!

I woke up this morning at 4 00am and was wide awake! So much so that I got out of bed and sent some emails before heading back 2 hours later! I then fell asleep until nearly 9 am.

It was pouring with rain as I walked over to our local church to attend the burial of my friend’s husband who died with Covid 19. He was 80 and not in the best of health but until the lock down had been playing the odd game of golf. Only family and close friends were allowed to go to the service inside the church so I joined many of my neighbours and friends in the grave yard to await the arrival of the coffin. Amazingly, the rain stopped and the sun came out. The family had bought a number of beautiful sun flowers which some people threw on top of the coffin. My friend told me that her husband had been trying for years to grow some successfully! I have actually planted some this year and am struggling to keep them from rust and pests! I kept one of the sun flowers to show Mum when I skyped her today. It was really difficult to see my friend coping with her grief and not be allowing to be hugged by anyone. It really brought it home just how devastating the effects of this virus have been.

Mum was alert and awake this afternoon and looked much better than my last session with her. She was not sure who I was initially, saying that I was her mother but suddenly remembered that I was her daughter and that my name was Angela. She loved the sun flower and I told her about the funeral. She was unable to understand why we could not go to the service and could not believe that the pubs would all be opening on Saturday as she was convinced they had always been open. She appeared to find it difficult to hear everything I was saying and I was beginining to worry that she had become pretty deaf and might need her ears syringing! However, when I suggested that she might like a glass of whisky she responded immediately!

After a discussion about the release of the lockdown I asked her if she would like to sing! She joined me in renditions of ‘Its a long way to Tipperary’, Show me the way to go home’, Daisy , Daisy’, ‘we’ll meet again’ and’ there will be buebirds over the white cliffs of Dover’. Amazingly, she knew most of the words.

She soon became tired and I decided to leave her to slumber.

Saturday sees the opening up of all restaurants, pubs, hairdressers etc. I hope that everyone behaves sensibly and does not give this nasty little virus means to flourish.

Friday 26th June – heatwave!

The lock down is now easing at a pace with all shops now open and bars and restaurants set to open next Saturday. The weather appears to be supporting the easing and the sun has come out to tempt everyone back to the beaches. Thousands flooded to Bournemouth to dip their toes in the sea yesterday resulting in the council leader declaring a major incident as roads became grid locked and social distancing seemed to have been forgotten. Time will tell whether the crowds enjoying the sun will add to the number of Covid 19 deaths which is still around 150 per day.

I went out for a much needed cycle ride this morning and my temperature guage hit 31 degrees on my bike! I managed 14 miles but came back drenched in sweat and in need of a cold shower.

I skyped Mum on Monday and again this afternoon. She has not been doing too well with the warm weather and was clearly very tired. She had very dark circles around both eyes and had to be woken up to talk to me. Sadly, she was mainly in her own little world and was chatting to the imaginary Joan. She and her lovely (!) husband were planning to go out for Sunday lunch. I managed to break into the conversation and asked if her husband had been behaving himself. ‘He has been very good lately’ she replied and then went on to talk about Mother’s Day and why she had not had any visits. She concluded that if people did not want to visit her on Mother’s day then they should be made to stay at home! I managed to show her some of my hanging baskets which she admired before she became too tired to keep her eyes open. She said that she just wanted to go back to sleep. I bade her goodbye, blew her a kiss and told her I loved her and would try and see her as soon as were allowed to visit. I think that this may not be for some time as it will not be possible to see her in the garden which does seem to be happening now in Scotland. I am praying that the second wave predicted by some scientists following the opening of pubs etc does not materialise. I have not seen Mum since February.

Wednesday 17th June – where’s the tooth fairy?

It was with some trepidation today that I Skyped Mum following on from my last attempt when she refused to talk to me. I rang the home this morning and was informed that she had been up chatting with herself most of the morning and seemed very happy.

Thankfully , she was happy to see me and seemed quite bright. She said that she felt better than she had done and was feeling OK. I noted that her last tooth which has been hanging on for the last few months had finally disappeared. Her carer was unaware that it had fallen out but was able to confirm that it was now missing! We both joked with her that she needed to find it if the tooth fairy was to pay her a visit and she laughed. I also noted that she had quite a bit of bruising to her left forearm which most probably occurred when she had been hoisted the other day. I told her that I had posted a parcel of chocolates and pants which should arrive very soon. She laughed at the idea but I am sure she will enjoy them when it arrives. We ‘chatted’ for about 20 minutes and her carer told me that other relatives were coming and seeing their loved ones through the windows. I thought that this might be a bit tricky as Mum is on the first floor! I am not sure how I would feel about seeing her at a distance and not being able to give her a hug.

Finally , the government is beginning to make noises about easing the lock down for some care homes. There are now a few who have invited relatives into the gardens to meet their loved ones with social distancing and PPE in place. This would be difficult for Mum as she rarely leaves her bed but is occasionally hoisted into a chair to take her to have a bath. I do hope that I can some how manage to see her soon as I haven’t seen her since February when we left to go to Australia. I know that it will be a very emotional meeting.

The new cases being recorded appears to be waning and the number of deaths is continuing to fall slowly. The most dramatic news this week was that the drug trial which has been taking place has shown that dexamethasone can prevent deaths in about third of ventilated patients and is therefore an excellent start to understand and try and find a cure for this wretched virus.

I was finally declared ready to start working on the bank at my local hospital!! It has only taken 3 months! I have not been given an induction, PPE has not been mentioned and neither has corona virus or any form of mentoring. I do not know how to book shifts or how to access a time sheet. My confidence in this hospital is sadly very low and I am afraid that I have therefore decided not to go back unless there is a second wave. I feel that going back on the front line now without any induction or PPE training would put me at risk and also then put Mum at risk should I be able to visit in the near future. I am thoroughly disappointed with the whole process which could have been and should have been so much better.

Robert has driven up to see his 92 year old mother today – the first time he will have seen her for nearly 5 months. I hope she remembers who he is!

June 13th – forming ‘bubbles’

The government announced this week that households in England would now be ‘allowed’ to form bubbles! This appears to mean that single people who have been living alone can now join another household to help combat any loneliness. The ‘singleton’ will be allowed within the consenting families home and vis versa and will also be allowed to stay the night. It all sounds a bit dictatorial and appears to imply that the majority of the population are not able to think for themselves or make informed decisions about their own and their families health. The chance of catching the virus appears to be around 1 :1,500 interactions as the number of people testing positive continues to decrease. Shops will be allowed to open from Monday. My friend and her husband have been isolating from each other for the whole of the lock down – he is a doctor living and working in London whilst she is working as a doctor from the family home in Leicester. He is starting to form the bubble from tomorrow but will have to travel back from London on public transport.

In the mean time thousands have hit the streets to demonstrate to remind us all ‘that Black lives matter.’ I do hope they all look after themselves and ensure that they are socially distancing and remain safe particularly since statistics show that the black community are more likely to contract a more severe form of Covid 19.

My Mum continues to live in her own little bubble. She neither understands or remembers why no one is visiting her or why all the staff in the care home are wearing full face masks. Happily all of the staff and the residents have tested negative but the home still remains in full lockdown an no visitors are allowed. I skyped Mum yesterday. She announced straight away that she was in a very bad mood and didn’t want to talk to me. She was clearly quite angry that I had not been visiting. She declared that she no longer even liked me! I asked her if she would like to see Elgar to which she replied ‘ why would I want to do that, I hate cats!’. Actually I was quite heartened to hear this as it meant that she had remembered that Elgar is a cat! I tried everything up my sleeve including showing her the new teds but she just closed her eyes and told me she was going to sleep. I told her I loved her, wished her happy dreams and waved goodbye. Hopefully tomorrow will be another day!

I am pleased to say that donations to my facebook page for The Lewy Body Society have made over £350. These included money from sales of some of the little bears during lockdown.

7th June – It’s a long way to …….

I received a phone call on Friday from one of Mum’s carers to let me know that Mum had consented quite happily to have the Corona virus swabs taken and didn’t make any fuss at all! I am so pleased that I was proved wrong. Apparently all she said afterwards was that ‘ it was a bit tickly up her nose’. They phoned me again today to let me know not surprisingly that all of the residents and staff have now been swabbed and that they have all been negative. Good news, but I am still not allowed to visit and Matt Hancock has met his quota for the day.

I skyped Mum today who was wide awake having just returned from having a bath and her hair washed. I commented that her hair looked lovely but she told me that she felt awful and did not know how much longer she could go on and just wanted to die. She had no memory of having the swabs taken but did mention the fact that she had been having to fight off some of the staff. I suspect that this was in response to the hoist which she hates.

I managed to get her to talk to me and told her that one of her favourite films was going to be on the TV in about 20 minutes. She has always loved musicals and recognised the name ‘Guys and Dolls’. I suggested that it might cheer her up and she agreed that it would and her carer assured me that she would put it on for her to watch. We had a chat about Carousel which was on the TV yesterday afternoon rather coincidently on the same day that we and some friends would have gone to see it on the open air stage at Kilworth! It was probably not such a shame that it had been cancelled as the weather was dreadful!

She recognised Robert and Elgar! She was fairly chatty and did manage the odd laugh. I left her with Guys and Dolls on the TV – I do hope she managed to sing a long.

The carer who was with Mum this afternoon sent me a video of Mum having her hair dried – she is singing loudly!

I will try and attach it – she is not a bad singer!

Sadly, I couldn’t manage to upload the video but she is singing ‘its a long way to Tipperary!

Wednesday 3rd June – Time for a hair cut!

I managed to Skype Mum today who was not in a very good place. When she saw me on the screen, she said ‘ Angela, you are normally quite a good looking girl but today you look awful and your hair needs cutting. It is alright to have long hair when you are 25 but it is not alright when you are 27!’ Thanks Mum – glad to hear that I only look 27! I tried to explain that all hairdressers were shut but she couldn’t understand why and started talking to herself about hairdressers and how her hairdresser would gladly cut Angela’s hair!

One of Mum’s favourite carers came in, wearing full protective gear and on hearing our discussions she showed me that she has shaved her head because she finds all the protective gear makes her head very sweaty! That really shows commitment!

I managed to distract her and showed her my new teddy who is proudly wearing a hat decorated with blue spots to help celebrate Lewy Body awareness week.

I played her my new piece on the piano – the first part of Beethoven’s sonatina which I have been practising for hours! When I asked her how it sounded she replied ‘awful!’. The carer who was with her kindly added that she said it sounded quite good to which Mum replied ‘ well you don’t know much about piano playing then do you?’

I asked her how she was feeling and she replied ‘ I am completely fed up and and just want to die.’ I asked her if she had had her daily glass of whisky and suggested that a small glass with some chocolate might make her feel a bit better. She agreed that it would.

It is so hard to hear Mum say that she wants to die but I cannot help feel that most of us in her situation would feel the same. This is a truly dreadful disease made far worse by the government imposed lockdown to all visitors by the government. I can only hope that they will begin to lift some of the restrictions soon. In the meantime, I have been informed that Mum must be subjected to a cornona virus test even though she and none of the other residents or staff have any symptoms. I have asked that she should not have one but have been told that everyone is to be included in the testing. I spoke at length to one of the carers who assured me that if she was very distressed during the process that she would step in, stop the testing and say that Mum refused to have it done. These tests are now only being carried out to meet the government’s target. Sadly these tests should have been performed months ago when hospital patients were sent to care homes without testing.

1st June. I don’t know whether to laugh or cry.

As you may be aware, I answered the call of the government to go back to the NHS to help with the corona virus crisis. It has been a very lengthy and demoralising process! Finally, on Friday I was asked to drive to my local hospital ( a round trip of 36 miles) to sign a contract to work on the bank having completed all the on line tasks etc. I met the young lady in a corridor who thrust a number of pieces of paper at me which she asked me to sign and then asked me to tick the areas of the hospital I would like to have access to!! I pointed out the paragraph in the contract I was to sign which stated I would be given a uniform that I should wear at all times. She had no knowledge of this. I asked her where I would be able to park and if I required a permit. She replied that I would be best off parking in the Lidl supermarket car park as this was open 24 hours! I asked where this car park was and she replied ‘ google it!’ and left. Feeling rather dejected and helpless I asked the receptionist if I could talk to someone else . A pleasant young man hurried out to my aid ( no evidence of social distancing). He told me that I wouldn’t be supplied with any ‘uniform’ or ‘scubs’ but that doctors usually wore their own smart clothes! I asked him if he would take this out of the contract which he did by crossing it out. I then asked him if it was correct that I should chose where I went in the Trust as this did not seem quite right (some of the options included drug cupboards ! )He agreed and proceeded to tick a number of places on the form. I then asked if it would be possible to have my ID badge completed in view of the fact that I had travelled in and had been reassured that this would take place. Fortunately the receptionist kindly offered to arrange this for me and took my photo in the corridor. The badge was produced in next to no time and I left wondering where I could find Lidl!!

Today I have an e mail asking me to return to pick up my IT password and another asking me to reapply for my DBS as it runs out in August! I was only granted it at the end of April!

My overall conclusion is that if the NHS would like retired doctors to return to the frontline, they need a much better system!! The chances of my deployment are looking slimmer by the second!

Anyway, lockdown appears to have come to an end. Schools are returning and folk can now meet in numbers of 6 if you come from England providing social distancing is maintained. The whole Dominic Cummings fiasco has sadly led to a real lack of confidence by the public in any of the guidelines and many people are perplexed, confused and very angry.

Care homes remain closed. I am still unable to see or speak to my Mum other than by the odd Skype chat which may not happen if the staff forget or are too busy. I spoke to her the other day but it is very difficult to find things to talk about as she has very little comprehension and nothing to talk about. She does however look as well as can be expected for someone confined to bed in the same position for 24 hours a day. I wrote to my local MP to ask if the government could start looking at the real crisis in Care homes which is the deprivation of freedom and loved ones to residents but he was adamant that for the safety of the residents they will stay closed for the foreseeable future. I do feel pretty upset that Mum’s carers can go in and out whilst I cannot.

We have learned today that this has been one of the warmest springs on record. It has certainly been very pleasant and has hopefully helped many people cope with the lock down although I have much sympathy for those people living in flats or homes without gardens.

I only hope that the easing of lockdown does not result in a second wave of cases that may well overwhelm the NHS.

This week is Lewy Body dementia awareness week – please do check out the website and try and learn more about this devastating disease.

Sunday 24th May – Parcel delivered

On Wednesday I drove over to Mum’s care home ( a round trip of 126 miles) with a parcel of goodies including a bottles of whisky and port, chocolate buttons and a selection of Mr Kiplings cakes. I also included boxes of Heros chocolates for the staff and a photo album. During the week I have been going through hundreds of photos which we had stored in the top of the garage. I managed to find some photos of myself and my sisters when we were small children and put these in a photo album along with photos of Mum and Dad at Christmas and various weddings and family dos. When I arrived I parked in the car park and rang to announce my arrival. I was met by one of the carers who stopped for a chat and relieved me of my delivery. I was still not allowed in to visit Mum. I was not expecting to be able to visit but I still found it very strange and emotional to have to hand presents over to a member of staff who then took them in and gave them to her. They have not had any cases of Covid 19 in the care home and all of the staff have remained well.

I skyped Mum yesterday. She was on good form, awake, alert and able to converse. With the help of the carer we managed to talk about some of the photos in the album. Sadly she was not able to recognise us when we were little and had very little recollection of many of the events including my wedding! She did however enjoy looking at the photos of the family dogs! In the middle of this she suddenly began screaming about pain in her right foot. The carer tried to help her but she became quite aggressive. I tried to distract her and suggested that some chocolate buttons might help. She agreed and the pain in her foot miraculously disappeared as soon as the chocolate entered her mouth! All in all, it was a very successful Skype session and gave us something to talk about and focus on. She laughed and smiled as we discussed some of the photos and I managed to engage her for nearly half an hour. The power of chocolate!

On Friday, I was finally contacted by my local hospital regarding my mandatory training to return to work! This comprised a short e mail with a link to the training website and instructions on how to access the mandatory training documents!! These include safe guarding, fire, health and safety, manual handling etc. Not one of them refers to Covid 19 or the requirements for PPE!! I cannot believe that I have had to wait for so many weeks to be given this information! Anyway, I spent yesterday ploughing my way through them and obtaining the relative certificates. I can now only wonder what other barriers may be put in my way before I am allowed to return to work ( if required!)

I leave you with some photos from my walk yesterday – hopefully there will be gold at the end of the rainbow.

Monday May 18th. The lockdown eases.

Last week we saw the opening of garden centres and the resumption of some sports such as golf and tennis providing social distancing is maintained.  Robert and I headed down to our local garden centre. We were able to go straight in and everyone kept their distance as they walked around the plants and the produce. We felt very safe and wondered why they had been forced to close for so many weeks when all of the supermarkets have remained open.

The care home sector is of course still closed and many residents have now been imprisoned in their own homes and have been unable to see or hug their loved ones. There is at the moment no obvious release date. Many residents are very elderly and suffer from dementia. They may have no idea why they are no longer visited or allowed out for a walk. I have no doubt that the staff are doing their very best under these very difficult circumstances. In Scotland, 70% of the carehome population are on ‘end of life’ pathways and may therefore never again see their loved ones before the lockdown is released. Most people who enter a carehome only have one way out. Are we as a society turning a blind eye to what is happening to these poor folk who have now had their liberty and in many cases their source of comfort taken from them?  My friend’s Mum has been diagnosed with Covid 19 and although she has not been too bad physically she has been very distressed by having been confined to her room and her behaviour and mental health has suffered considerably as a consequence. Testing these elderly patients with dementia is also very distressing. I have asked Mum’s carers not to test her as I know that she would not be able to cope with someone trying to put a swab up her nose or down her throat.  She is and has been isolated in her room for many years now. She is completely bedbound and lies in exactly the same position for 24 hours per day.

I have skyped Mum twice this week. Yesterday she was quite bright and able to recognise  both Robert and me. I was able to engage her in conversation for about 20 minutes after which time she became too tired and wanted to sleep.  Robert and I have been going through thousands of photos which prompted me to chat to Mum about our old childhood home. She seemed to be able to remember her garden and all the vegetables that she and Dad used to grow.  This has prompted me to make an album of old photos for her which I can now take over and leave for her outside the home. I will of course also take over some chocolate, whisky and port!

I leave you with some lovely pictures of walks of I have been taking with my neighbours dog.