21st October – 27th October

Day 35 – Day 41

21st October

Today was my mum’s day off from the day care centre. The carer arrived and we began the process of washing and dressing her. After this, I gave my mum her breakfast and brushed her teeth. She was looking extremely tired today.

I sometimes look at my mum and wonder what she would have been like if she did not have Alzheimer’s. This makes me very sad, as she was such a lively and happy person, before the Alzheimer’s began destroying her brain. The precious moments for me are when I hear my mum laughing, her laugh was,and still is, contagious and vibrant, I am glad that she still has this at times.

I received an email from the Health and Social Care Integration Directorate and Integration Reshaping Care Division regarding my email to Nicola Sturgeon. The letter outlined the duties of all local authorities and linked these duties with the appropriate legislation. The letter further advised me of some of the processes and procedures connected to the duties, and named some charities which I could contact for help and assistance.

I found this frustrating and patronising, especially given the fact, that I have been a carer for three years now and being a carer for this length of time I already know all the processes and procedures and linking legislation and the charities available to my mum and I. The writer of the letter further explained that he could not access my blog address, therefore, had not been able to read my blog.

I received a letter from my local MP regarding one of my complaints. My complaint related to my mum’s upheld complaint arising from when she sustained 28 bruises whilst in a local care home. As well as this, my complaint was that, “no upheld complaints, which are investigated by the vulnerable adult protection team, are logged on the Care Inspectorates website”. This deems elderly care homes invisible and means that the general public cannot make an informed choice about the elderly care home that they may want to put the person they care for in. WHATEVER HAPPENED TO TRANSPARENCY?

The letter from the MP’s office basically outlined what I have just stated above. Once again I feel annoyed. Why on earth have they sent me a letter outlining what I have already told them? What kind of resolution is this and how does this help?

This made me think about the letter which the local MP sent to the Care Inspectorate regarding my complaint and what the content was. Did it explain my complaint properly? I am baffled and stressed and I feel as though I am running round in circles. I am also wondering why I even bother, but, then I look at my mum and I know exactly why I bother.

I decided to contact ‘The Courier’ today, which is a local newspaper, I asked them if they would be interested in having a look at my blog and writing a story based on  the content, or, the blog itself. I explained to the reporter that I felt frustrated about the lack of action regarding my numerous complaints, to both, the local authority and my local MP. I gave the man from The Courier my blog address and he said he would have a look at it and get back to me.

I contacted the letter writer from the Health and Social Care Integration Directorate Integration and Reshaping Care Division and I explained my frustration at the content of the letter which was sent to me from his department  I also explained that I felt as though I had registered an abundance of complaints with the local authority and my local MP and that I have got nowhere with this. I also said that any response letters I receive from the people I complain to seem to replicate the letter that I received from him, outlining processes and procedures.

I explained to him that I have now contacted ‘The Courier’ newspaper because I feel that I have no other options, as all others seem to be shirking responsibility, or being, not accountable for my complaints and also that no-one seems willing to offer a resolution. The man I spoke to asked me to copy and paste my blog onto a word document and email it to him. He explained that he was unsure of all the issues because he could not access my blog. I done as he asked and sent an email with an attached word document containing the content of my blog. Later I received an email from the letter writer saying that my blog had been accessed and that he was seeking further information from the parties involved.

I am praying that someone will take notice…….

Hopefully something positive will come from this.

It is hard to imagine that asking for simple things such as dignity, respect, inclusion and a level of privacy and normality can create such worry and feelings of negativity. I often wonder, what it would be like ‘if the shoe was on the other foot’ and some of the people who are dealing with my issues were being treated the same way as my family and myself are being treated. How would they react and feel? Do they even reflect on how they are making another person feel? Or do they just go through the procedures in a robotic way?

I contacted the local MP’s office and asked why they had sent me a letter confirming what I had told them already and what form of resolution this was. The person I spoke with said they were not fully aware of the content of my complaint and said that they would look into it and get back to me, however, based on what I had just told them, they believed that they would have to write to the Scottish Minister of Health and Care.

I have lost valuable time tending to my mum and spending quality time with her because of all this. Once again my day has been taken up trying to get outside help and dealing with issues and excuses. Aaaaaaargh! How frustrating is that?

On a positive note, my mum’s keyworker had sent me an email saying that 12 hours a month had been approved for a carer to come to my house to allow me to take my children out or attend parents evenings etc…. I need to say my mum’s keyworker is fantastic and strives to ensure my families needs are met within the boundaries of legislation, policies and cutbacks. It does feel good to get these little positives within the maelstrom that seems to surround my life at present – always the optimist. I emailed my mum’s keyworker and thanked her for this. I also explained to her that I have a sore shoulder/arm and that I would be going to the doctors. She emailed me back and asked me to contact her if I needed further support.

22nd October

I woke up at 7.00am. My shoulder/arm is still sore. I began to sort out the washing, there was lots of washing to do. Aaaaaaargh!

The carer arrived at 9am. We got my mum up from her bed and we sat her on the commode, after ten minutes we washed my mum and dressed her. The carer gave my mum her breakfast whilst I got ready for the day. We put my mum into my car and then I took my mum to the day care centre. Once again, I am feeling totally aggrieved at the way my mum is being heaved and hauled and twisted in order to get her into my car – it is awful for an older lady with limited understanding to have to endure such treatment.

After I had dropped my mum at the day care centre I went to my friend’s house with milk, custard and prunes. I then went back home and continued with the washing. Before I knew it, it was time to go and collect my mum.

I picked my mum up from the day care centre and took her home. A carer was waiting for me on my return, she is new and seems extremely nice. We heaved and hauled and twisted and pulled my mum out of the car and took her into my house, we changed my mums pad and sat her in the livingroom. The carer hung around for a while chatting, which was nice, however, I was wondering when she was going to leave, as I had so many things still to do. She left. I prepared our diner and continued with the washing and drying, I left the ironing for another day.

The signal on my phone had not been great today. Later in the day my phone pinged, I had a voicemail message. ‘The Courier’ newspaper had called and left me a message, they asked if they could come out tomorrow and take a photo for any potential story.

I was wondering what to do, the thought of a story in the local newspaper evoked;

Worry and anxiety

and

Made me think of potential problems that this may cause, especially given the degree that I am sitting at present.

Whilst my mum was in the day care centre I went to the doctors and the doctor suggested that I have an ultra sound scan carried out on my shoulder. He is thinking that there might be a build up of tissue around the shoulder joint and told me to limit lifting heavy items.

I contacted my mum’s keyworker and explained that I would need extra help as the doctor had suggested that I limit lifting heavy items. I said that it would be good if there was a double up of care staff in the morning and in the evening, for my mums personal hygiene and that I would manage throughout the day. My mum’s keyworker said that she would try to get cover for all the carers visits, given what the doctor had advised.

All my family ate dinner and then my children done the dishes. The carer arrived and we washed my mum and changed her into her pjs. We then sat my mum in the livingroom.

I had a bath and then got changed into my pjs. I asked my son to help me lift my mum from her chair so that I could walk my mum around my house. She struggled with this and I felt as though I was pulling her along. With the help of my daughter I sat my mum in her chair in the livingroom.

Later myself and my daughter walked my mum through to her room and changed her pad, we then put her to bed.

Sleep time for me and my children…….

23rd October

I woke up at 6am. I went down stairs and I checked on my mum, she was still asleep. I made myself a cup of coffee and I watched television. The carer arrived at 9am, we woke my mum up. We put her on the commode and then we washed and showered her. The carer gave my mum her breakfast whilst I got ready for the day. We took my mum up to my car and we went through the usual process of putting her into my car. I took my mum to the day care centre.

I went home and began the ironing, the pile was high – what a headache.

I received a call from the no win no fee lawyer and she said that they are not able to take on my mums case, whereby, she received 28 bruises on her body whilst staying in care home for seven days. They said that the reason that they could not take on my mums case was because she would not be able to give evidence if it was to go to court, due to her vulnerability (she cannot communicate as Alzheimer’s disease has taken away her ability to communicate). EQUALITY – YES I SEE THIS – EVERYONE IS TREATED EQUAL – WHAT A JOKE, WHAT A SHAM.

I called the man from ‘The Courier’ newspaper regarding their visit today, he said that due to royalty being in the area that no-one would be available to come and take the photos today, this was rescheduled for Monday afternoon.

I read something in the ‘Daily Record’ newspaper which caught my eye. There was a story regarding a yellow card scheme for people who have had their benefits sanctioned, whereby, they will have something like 14 days to explain why they should not be sanctioned.  This brought to my mind the discretionary panel, who are looking at my mums perceived arrears and the expected payment of £56.90 a week for her transport to the day care centre and whether, or not, my mum will be required to pay both the arrears and the transport charges. I was wondering if the people who receive the yellow card will be required to go through a similar undignified process that I had to go through. I contacted the ‘Daily Record’ and asked them if they would like to look at my blog. The person I spoke to took my blog address and said that he would be in contact if they could use my blog or its content.

A colleague of my mum’s keyworker called to say that they had arranged some double up cover for me over the weekend, she gave me the details and further told me that they would look into it in more detail on Monday. She explained that all services for home care are at full capacity.

I gave up with the ironing, I could not be bothered. Instead I cleaned the house, this took me all morning and afternoon. I then went to my mum’s day care centre and picked my mum up. I took her home. The carer was waiting for me to help me get my mum out of the car. We took my mum down to my house and changed her pad, we then sat her in the chair in the livingroom.

I prepared dinner and then we all ate dinner. As usual I fed my mum as I fed myself. Whilst my children done the dishes I walked my mum around the house, I then asked my daughter to help me sit my mum in the livingroom, it takes two people to do this to ensure that my mum is sitting right back in her chair.

The carer arrived and we walked my mum through to the bedroom, we washed her and changed her into her pjs and then we walked my mum through to the livingroom and sat her in her chair.

We spent the evening watching television. Later I asked my daughter to help me walk my mum to her bedroom, we changed her pad and put her to bed.

We were all exhausted and we all went to bed.

24th October

I woke up a 6.45am – I must be going mad, why so early?

My shoulder is still bothering me, it is just a background niggle, but still very annoying.

I checked on my mum and she was still asleep. I made a coffee and relaxed on the sofa and watched the news.

The first carer arrived at 9am and the second carer arrived at 9.15. I left the carers to get my mum washed and dressed, this made me feel extremely guilty, as I felt that I should be helping in some way. It took a lot for me to stand back and not get involved, but I did.

The carers left at around 10am and I gave my mum her breakfast, this took a long time, as my mum was chewing her food very slowly. I then brushed my mums teeth and wiped her mouth. I wheeled my mum through to the livingroom and left her there to watch TV.

I got myself ready for the day.

I decided to tackle the massive pile of ironing. I was ironing until 1pm, what a nightmare. Aaaaaargh! I hate ironing. I made everyone lunch. We ate lunch, I fed my mum as I fed myself.

I put the ironing away and then I walked my mum around my house. After her walk I sat her on the commode. After half an hour I lifted my mum from the commode and put a fresh pad on her, I then walked her through to the livingroom and sat her in her chair. My arm was sore.

I went upstairs to do my exercises. I have decided to begin doing my Step Reebok DVD as there is a lot of arm movement during this exercise routine and I am thinking that this will help reduce the pain in my shoulder/arm. I was puffed out by the end of it. I am unfit……

My children’s three friends have arrived and are saying overnight – it’s going to be a busy night. I made dinner for my family and my children’s friends – what a lot of dishes Aaaargh!

We ate dinner and then I done the dishes. I decided to chill out on the sofa for a while.

The carers arrived and they changed my mum into her pjs and put her too bed. My mum looked exhausted tonight.

I watched television for a while and then went to bed. All the children stayed in my sons room and watched movies – they were very well-behaved – Phew! thank god for that!

25th October

I woke up at 9am. The carers arrived at 9am. I hate when this happens, I am still sleepy. The carers put my mum on the commode and then washed and changed her into her clothes. During this time I made a cup of coffee and watched some television. It is so difficult to sit back and not help, I suppose I will have to get used to it. It is making me feel lazy and awkward though,.. grrrrrr!

The carers left around 10.00am. My mum was in her wheelchair, I gave her breakfast and then I brushed her teeth. She was giggling this morning and quite alert – which was lovely to see.

I put my mum’s hat and poncho on and wheeled her out the front door. I put a blanket round her legs to keep her warm, I left my mum outside for a while to get some fresh air, I left the front door open and during that time I could hear her laughing and chatting away. She loves fresh air.

I brought my mum into the house at 10.45am. I made her a cup of tea. All the children had woke up and were, either, eating breakfast, or getting changed for the day.

My daughter had a riding lesson today. I left my son in the house with my mum and asked him to give her water/tea and a sandwich for lunch. I took my daughter riding. The time is 11.45am. Whilst I was out, I received a text message from the carer who was due to be at my house for 12.30, she said that the second carer had not arrived and she was not able to change my mum. She also said that she would be back to my house at 16.30pm.

I telephoned my son to ask him if everything was okay, he said it was. I asked him if he was okay, he said he was fine.

I arrived back home at 14.30pm. I checked on my mum and she was sitting quite happily in the livingroom watching TV. I checked on my son and he was fine.

I cleaned the house

The carer arrived at 16.30pm, the second carer did not show up, I helped the carer to change my mum’s pad and then we walked her through to her chair in the livingroom.

I wrote a letter to The Friends of the Community Hospital asking if my mum could use their community mini bus to travel to and from the day care centre. I hope that they agree.

I took it easy for the rest of the evening and lay on the sofa reading my book. I then told my children to have a bath or a shower and to prepare their school clothes and school bags for tomorrow – back to school ..Whoopee! Whoopee!

The carers arrived and washed my mum and put her pjs on, they then put my mum to bed.The carers who come out to my house to help with my mum are brilliant, in all ways. They are very accommodating and helpful and their professionalism is excellent. This is one part of the services that I feel should be given more recognition especially for the high standards of work that they carry out.

I took my mum in a cup of tea and sat with her for a while, we watched television. My mum was beginning to look sleepy, I brushed her teeth and then I put her television and light off.

Today felt like a relaxing day for me – it has been a great day.

26th October

I woke up at 6.45am, I woke my children for school. I checked on my mum, she was still asleep. The morning was chaotic, it took me ages to stir my children from their sleep and get their feet to hit the floor. Eventually, I managed to rouse them from their slumber and they began to get dressed for school.

I checked on my mum again and she was still asleep.

My children left at 8am. I began my exercise DVD. I heard someone shouting hello, I stopped exercising and I ran down the stairs, the time is 8.45am. A carer has arrived and then another carer arrived and another and another – oh! dear! I have too many carers. After a quick chat two of the carers left, the other two dealt with my mum. I went back up stairs and finished my exercises. When I went back down stairs my mum was on the commode, this allowed me to have a quick shower. By this time I felt as though I had done a full days work – what a busy morning.

The carers took my mum into the bathroom and washed and dressed her. Whilst they were doing this I got dressed for the day.

Once my mum was ready one of the carers left and the other gave my mum her breakfast. I brushed my teeth and brushed my hair. Myself and the carer took my mum up to my car and we put my mum into the car. I drove my mum to the day care centre.

I went shopping for some messages and then drove home.

I cleaned the house and I put a washing on.

I walked the dog.

I drove to the day care centre and picked up my mum. The Community mini bus was parked in the lane that I normally park in when I pick my mum up. I parked directly behind the mini bus as there was nowhere else to park. I went into the day care centre and picked up my mum, I wheeled her out to my car. When I got to my car I noticed that because of where I was parked I had prevented the mini bus driver from lowering the ramp at the back of the mini bus and this meant that an older lady in a wheelchair was not able to get on the bus. I felt terrible and I apologised. I noticed that there was lots of spare room on the mini bus and felt that it was very unfair that my mum could not utilize the mini bus, it would make life so much easier for her and for me.

I rushed my mum up to my car and I with the help of the lady from the day care centre I began the process of putting my mum into the car. Everyone was staring at me and my mum, the taxi driver parked on the road above us, the mini bus driver, the lady in the wheel chair and even a few of the passengers on the mini bus, I felt awkward and embarrassed, how humiliating for my mum.

I left the day care centre feeling rather flustered and drove home. The carer was not there when I arrived home, I left my mum in the car and went into my house to make us both a cup of tea, during this, the carer arrived. We got my mum out of my car and wheeled her into my house, we put her onto the commode and then we changed her pad and walked her through to the chair in the livingroom. During this my son arrived home from school, my daughter was at a dance class and would not be arriving until later.

The photographer from ‘The Courier’ arrived and took photos of me at my laptop, me leaning against a wall and one of me and my mum together.

I began preparing dinner, my daughter arrived home, we all ate dinner and then my children washed the dishes. I walked my mum through to the chair in the livingroom and my son helped me sit her down.

It’s a study night with my son – my headache has started already – what a nightmare, it is like having a conversation with a psychotic parrot – he is driving me bonkers……, “why this” and “why that”,? and “I do not need to know this” and “can I finish”?  “but” “but” “but” “but” “but” “but” “but” lol…… I thought that stage had passed long long ago aaaaaaaargh!

The carers arrived and washed my mum and changed her into her pjs, they then put my mum to bed.

I asked my children to get ready for bed and to get their school clothes and bags sorted out for tomorrow, this ended up like getting blood from a stone – total avoidance aaaaaargh! now I am like a psychotic parrot.

My children go to bed. I take a deep breath and deflate

Pj time for me. I sit on the sofa and read a book. I am tired.

27th October

I woke up at 6.45am. I woke my children and I checked on my mum, she was wide awake. I raised her bed and I put on her television, I then gave her a glass of water. My children left at 8am. I quickly drove to my friend’s house, as I had promised to drive both her and her children down to the local bus stop. I quickly popped into my local shop and picked up ‘The Courier’ and the ‘Daily Record’ and then I drove home.

There was a story in ‘The Courier’ regarding my blog and the worldwide attention it is receiving, the article was well written, I was extremely happy with it.

My phone rang at 8.40, it was John Beattie from BBC Radio Scotland. He asked if he could interview me regarding my blog. I said yes, even though I felt rather flustered. A telephone interview took place. I am worried about my Glasgow accent and I am wondering if I made any sense – who knows!

The carers arrived at 9am and they began the process of getting my mum ready for the day. Whilst they were doing this I got myself ready. We put my mum into my car and then I took her to the day care centre.

I drove home.

I received a comment on my blog from STV news asking if they could film and interview my mum and me with regards to the success of my blog and the reasons why I began writing the blog. I agreed. We scheduled a visit for a week on Wednesday.

I received a call from BBC Radio Scotland asking if Kay Adams could interview me regarding my blog, I agreed and this is taking place a week today.

I cleaned the house and I put on a washing – I am determined to keep on top of my washing, drying and ironing. I will believe this when I see it.

I am feeling ‘out of sorts’ and ‘worried’ about the attention my blog is receiving and at the same time I am glad my blog is getting attention. At times, today, I have had tears rolling down my cheeks and I have felt a deep sadness that I have needed to go to this level to be heard, by the people, who are meant to help the most vulnerable in society. At times, it feels as though Scotland is a third world country.  It is extremely difficult to bear your soul to the world and to go into the intricate details of your life. However, frustration and anger at how people with extreme vulnerabilities are being treated has driven me to do this.

I drove to the day care centre and I picked my mum up, I drove her home, she was crying and seemed quite sad. The carer was not there when I arrived home so I sat with my mum until the carer arrived. We got my mum out of my car and we took her into my house.

My children arrived home.

The carer and I put my mum on the commode and then we changed her pad, we walked her through to her chair in the livingroom and then sat her down. The carer left.

I prepared dinner and then we all ate dinner. My children washed the dishes as I walked my mum around my house. My son helped me sit my mum in her chair in the livingroom.

The times for the joint visit from the carers was all wrong and both carers were due to arrive at different times. I helped the carer change my mum and we put her to bed.

My head is sore.

My son and I have decided to change his studying routine, as ‘apparently’ I am driving him bonkers. We have agreed that he is going to study on his on and then he is going to show me what he has done. This sounds like a good plan. Whilst my son studies, I sit chatting with my mum.

My daughter, my son and I all sit in the livingroom for a while and watch a little television. It is strange, as this is the first time, in a long time, that we have all sat in the livingroom together.

It is bed time for us all.