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.

11th October – 20th October 2015

Day 25 until Day 34

What a brilliant holiday and what a relaxing time. I spent the 11th of October packing my cases and explaining what my mums routine is to the person who would be caring for her whilst I was away. I left with my children for our holidays on the 12th of October, we were all excited especially my children, who were also nervous about the flight.

Our holiday was relaxing and care free and hot hot hot……. It was fantastic. Whilst on holiday I closed my mind to all that was happening at home and concentrated on fun with my children.

We went to the green caves of Lanzarotte – what an amazing excursion, it was brilliant, we learned the secret of Lanzarotte which was amazing, anyone going to Lanzarotte should go to the caves and learn this secret….. they will get a fun surprise…..

We went to the Aqua Park and everyone enjoyed it, I think I had the most fun though. I managed all the slides bar one which looked too steep and too scary.

We went cycling along a promenade

We sun bathed daily.

We went to the beach on a few occasions.

I danced on a stage (after one too many). My children were horrified.

We went shopping that many times that I lost count.

We went to the Teguise Market and saw a camel. My daughter’s hair was braided and although extremely painful, she loved the finished result. The lady who braided her hair said that she was loopy!!!!!!

I had spent three years saving for this holiday, I had given a close friend money every month to ensure that the holiday happened and I am so glad that I did as we all felt relaxed and we spent lots and lots of quality time together.

On our return journey the flight was delayed which meant we never arrived home until 2.30pm on the 20th of October – total exhaustion.

I was in bed for 3.30am. My dad and his carer left at 5am. I woke up a 9am, just as the carer was arriving…… aaargh! here we go again.

We woke my mum and began the task of washing and dressing her. I gave my mum her breakfast and then walked her through to her chair in the livingroom. I decided to keep my mum home as I was feeling to tired to drive her in. I was glad to be back home but I was also thinking of the different situations that I would need to begin dealing with again.

On top of this I was thinking about the pain which I have had in my upper arm for the last few months, which I had hoped would go away whilst I was on holiday – it is still there. I need to go to the doctors as I am worried that the pressure of lifting and moving my mum has pulled a muscle or trapped a nerve. Who knows!!!

I collected the post and checked my emails.

I had received an email from the financial assessment officer from my local authority, he had stated that he was going on holiday and asked me if I could email any evidence regarding my mums expenditure to his manager, as soon as possible. This made me feel annoyed and fed up.

The thought of having to try to collate this information made me feel totally unmotivated and made me think about the call that I received from the financial assessment officer a few days before I went on holiday. This brought to mind the degrading way I felt during the call, due to the intrusion of my family’s privacy.

AAAAAAAAAAAAARGH! here we go again….

I keep thinking about how peaceful things were and how smoothly everything was going in my mums life, my children’s life and my life prior to the call regarding the perceived and unjust arrears that my mum apparently has accrued her local authority.

Yesterday 10th October 2015

I am completely amazed and overwhelmed at the attention my blog is receiving from all over the world, it is fantastic. It is good to know that people are seeing and reading about the life of a carer and gaining an understanding of the rhythms and rhymes involved, which are at times intense and demoralizing.

My children and I are going on holiday on Monday and I am really looking forward to it, so are they. It will be great to spend time alone with them.

I woke up at 7am. I felt tired and drained and I had no energy – I felt flat. Yesterday was still playing on my mind. I cannot believe that one phone call can make you feel so ill. My head was sore, I had gnawing pains in my stomach and I hardly slept. I felt invaded, my personal space was not mine – what a horrible feeling.

I checked on my mum and she was still sleeping. I left my children sleeping, it is good for them to get a long lie in. I cleaned my house, checking on my mum as I went along, she remained asleep.

My dad who is disabled arrived with his carer at 10.00 am. My mums carer also arrived at 10.00am. My mums carer and I got my mum up and we put her on the commode. We then showered my mum and then we dressed her. My dad’s carer stayed in the room so that she could see how we worked with my mum. My dad’s carer and my dad would be dealing with my mum whilst I was away on holiday.

The rest of the day I spent getting ready for my holiday on Monday.

At this time, I had a long think about the situation yesterday, with regards, to the telephone call from the man from the financial assessment team and my views have not changed, it is a complete invasion of a persons privacy to ask for the details that he asked for.

I have decided, as I am going on holiday, to forget all about the stresses and pressures put on me by these services, the local authority, government cuts and MPs. However, on my return I am planning to write to all services, a complaint letter focusing on the stress, anxiety and hardship caused by discriminatory practice, inequality and abuse and linked with not following the national codes of standards.

The outcomes will decide whether or not I raise a case with the ombudsman and again the outcome of this will decide if I raise a case with the European Union.

I am going to write off now and I will update this blog when I return from my holiday.

HAPPY HOLIDAYS

Yesterday 9th October 2015

RAGING RAGING RAGING RAGING RAGING RAGING

SO SO SO ANGRY……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………….

Everything was going along fine and dandy, I completed my normal routine and even managed to do my 50 minute tummy crunched DVD. My children left for school and I drove my mum to the day care centre.

I then went home and began to clean, I put a washing on, hung a washing on the clothes line and started to iron the dried clothes.

and then I received a telephone call……….

A man from the financial assessment team called me and told me that the discretionary panel had been in touch with him and that they are looking for further information regarding my mum’s expenditure. He said that they needed a breakdown of some of the costs which I had logged as expenditure for my mum.

We discussed the following:

1. How much heating fuel my mum uses and could I provide evidence.
2. How much electricity she uses and could I provide evidence.
3. Could I provide evidence for the amount of food shopping I have marked down for my mum such as food receipts.
4. What outings/social events I took my mum too and what part did my mum pay for or did she pay for it all, could I provide a breakdown.
5. Why I had £40.00 written down for my sisters fuel and respite – I explained that my sister came to my house every second weekend to look after my mum so that I could take my children out and spend quality time with them. He said that he did not think this would be taken into account. I asked why. He said that from previous experience, the discretionary panel has not taken this into account. I explained that I had used local authority respite before and during a 7 day stay in a care home my mum sustained 28 bruises, therefore, local authority respite was not safe to use and therefore, was not an option for my mum. I asked him to pass this information on to the discretionary panel.

During this conversation we needed to talk about my mums toileting issues and the items I required to keep my mum clean and hygienic. The man from the financial assessment was extremely nice on the phone but the topic was terrible.

I am astonished at the level of disrespect, the lack of dignity and the lack of privacy afforded to my family. I am astonished that in a family home I am expected to talk about my mum as a single unit, when she is part of my family.

I contacted my local MP’s office to vent my annoyance at this type of treatment. I was told that they were on my side…… phew! and that everyone has to fill in these forms. I explained that I had already filled in the forms however they were now looking at all the intricate detail and that it was degrading.

I explained that I was educated to an academic level and could quite easily go out and get a well paid job and I was informed that I made the choice to look after my mum. I said that I understood this however I was saving the local authority over £700 pounds a week by looking after my mum, so surely they could manage to ensure that my  family have a ‘normal and full life’. I was told that I should contact my mum’s keyworker. I asked why. The answer to that was so that she could help me fill in the forms. eh! phew! I do not get it! This is deliberate buck passing and it is disgraceful.

I am demented, I am angry.

NATIONAL CARE STANDARDS

Scottish Ministers developed the National Care Standards to ensure everyone in Scotland receives the same high quality of care no matter where they live.  The Standards explain what you can expect from any care service you use, written from the point of view of the person using the service. They also help you raise concerns or complaints. There are 6 main principles behind the Standards:

• Dignity
• Privacy
• Choice
• Safety
• Realising Potential
• Equality and Diversity

(http://www.gov.scot/Topics/Health/Support-Social-Care/Regulate/Standards)

I have now emailed Nicola Sturgeon, as follows:

Could I ask that you read my blog www.acarersstory.com and give me feedback as to why carers and those cared for are treated in such a way. To the extent that they are made to feel like a burden to society.

I am totally taken aback that I am being asked to provide receipts for my shopping bills, evidence of how much heating fuel my mum uses within my house hold, evidence of how much electricity she uses. Has it really come to this? Are things that bad, that people who are living in borderline poverty are being degraded and disrespected  by Government bodies just to prove that they are not overspending.

Imagine how undignified it would be to be required to explain your mother’s sanitary requirements to a male financial assessment officer over the phone and your mother being double incontinent. I had to do that, so that he could assess whether or not I am spending too much of my mums money on my mum. This is distressing, embarrassing and humiliating. It is disgusting behaviour, I feel disgusted.

Imagine how patronizing it would be for someone to ask you if your disabled mother did not stay with you, if you would still have a phone on your property, I was asked this because my mother, who lives with me contributes to the telephone costs.

I am totally shocked.

There are Governmental pushes to get older people to live in their community, we have an aging population and research is saying 1 in 3 people will have dementia by the year 2015.  From what I can gather from my experience as a carer of my mum people like us are getting pushed into extreme poverty, we are being isolated and we are being treated in an undignified way, we are being discriminated against, we receive unequal treatment and we are being negatively affected by disjointed services.

Sore head not a great night at all.

Yesterday 8th October

I woke up at 6.45am. I woke the children. I checked on my mum and she was awake. I put her light on, opened her blinds, turned on her televison and gave her a glass of water.

I checked on my mum, she had fell back asleep.

The children left at 8am. I checked on my mum, she was still asleep.

I began my tummy cruncher DVD and completed the full 50 minutes whoop! whoop! back on track.

The carer arrived at 9am we showered my mum and washed her hair, we put her clothes on and then walked her through to the kitchen, we sat my mum in her wheelchair. The carer gave my mum her breakfast, blow dried her hair and brushed her teeth whilst I got washed and changed.

I drove my mum to the day care centre and then I drove to the hosptial, I had an appointment at 12 noon. I had taken unwell around the end of May 2015, my stomach was in agony and I ended up in hospital. I had a high level of chronogranin A in my blood which is normally linked to a Neuro-endocrine tumor, what a frightening time. I had lots of tests done such as an MIBG scan (nuclear scan) MRI scan with contrast and a CT scan with contrast. however, all that was found was that my pancreas was bulky on the lefthand side.

I saw my consultant, because I said I was feeling great at the moment, outwith, the stitch I keep getting on the right hand side of my stomach, he decided to keep my file open. He told me to call and make an appointment in 3 – 4 months if the stitch continued as this can indicate gallstones. He explained that gallstones do not always show up in scans. The wait continues – which is fine because I feel good at the moment.

I drove to the day care centre and arrived early, I sat with my mum for a while and then I decided to take my mum for a walk outside. Pushing my mums wheelchair up the hill next to the day care centre was exhausting, I was puffed out, my mum was enjoying it though, she was chattering and laughing. I walked her around for a while and then I started the journey back to the day care centre – downhill – fantastic….. You would laugh if you saw the hill and you would think what is she on about, it looks like a slight slope, however, pushing my mum in a wheelchair makes the slight slope feel like a mountain…. I wish that they would hurry up with the referral for the powered motor for the wheelchair, it would make life so much easier. Win the lottery….., win the lottery….., I should start playing it first, I never buy lottery tickets hmmmmm!

The lady from the day care centre helps me put my mum in the car, my mum is squint and down in the seat and we cannot manage to move her up. I drive back to my house and wait for the carer to arrive to help me get my mum out of the car – I am early.

I decided that I would need to try and move my mum as she looked very uncomfortable. I moved her feet out of the footwell, what a palava, you really need to twist and pull her feet to get them round – poor mum. I sat her upright and held her hands and hoped that the carer would arrive early. We stayed in this position for about 10 minutes my arm was getting sore holding my mum upright and my mum kept trying to lie down putting a lot of pressure on my arm – I wish I had not arrived home so early.

Feeling angry again I wish someone would make contact with me regarding the mobility car and or the transport costs, it so unfair to my mum. To think that the local authority are quibbling over £56.90 transport costs, when it is costing them more to arrange for the carers to help me get my mum out the car – DIABOLICAL!!!!!!

Grrrrrrr!!!!! let older people live in the community but do not provide the equiptment and support that they need to maintain a normal and full life – makes me feel like a wild woman…….. If my mum was in a nursing home it would cost over £700.00 a week so why cannot they provide transport for her to a day care centre Grrrrr!!!!!

The carer arrives and we get my mum out of the car and wheel her into the house. The carer helps me change my mums pad and we sit my mum in the livingroom.

My children arrived home – what a noise – they are getting excited as it is nearly holiday time.

I prepared dinner and the we all ate our dinner. We sat and watched television for a while and then we walked my mum through to her room, we changed my mums pad and then I put her to bed.

My bed time too!!!!!!

Yesterday 7th Oct 2015

I woke up at 6.45am. I woke my children. I checked on my mum and she was still asleep. My children left for school at 8am. I checked on my mum again and she was still asleep.

I began to clean my children’s bedrooms – what a mess – what happened??? Everything is everywhere aaaargh! I was thinking that I would just leave their rooms, as I am fed-up picking up all their mess. They could tidy up their own mess after school…. hmmmmm! I am not happy!

I decided not to do my tummy crunchers, telling myself, that I will do them later (I know that this is a lie because there is very little chance that I will actually do them later).

I checked on my mum again, she was awake. I raised her bed and gave her a glass of water, I then put on her television and opened her curtains.

I made myself a coffee (a real coffee) – lovely…… “A change is nice”, I told myself.

The carer arrived just after 9am and we got my mum up out of her bed, we washed her and then we put her clothes on. I went and began my morning routine, I got washed and changed, whilst the carer fed my mum her breakfast. We then took my mum up to my car and put her in my car.

I drove my mum to the day care centre and then I went home.

What to do? Clean!!!! I had noticed some mice droppings under my sink, in the kitchen, so I decided to clean out the cupboard with Jays fluid and to put down some poison – uurgh!! what a job? Not a job to put off though.

It took me ages to clean under my sink, I had so many cleaning products stored there and I had to clean each and every one of them. Eventually I completed this task, I am keeping my fingers crossed that this will do the trick, as I do not want mice running about all over the house. That I could not cope with.

“What next”? I am thinking. I wondered through to my children’s room and I was thinking, “the poor wee things, they will be exhausted after a day at school, I should clean their rooms”. I clean their rooms.

I then put a washing on…. the washing goes on and on and on. I dry the washing and this goes on and on and on….. I iron and the ironing goes on and on and on…..

I walked the dog and then I went and collected my mum for the day care centre. The carer was waiting for me when I got home and we got my mum out of the car and took her into my house. My children arrived home – full of beans – I should have left their rooms, they had loads of energy, plenty for tidying their rooms hmmmmm!

The lady from the no win no fee lawyers firm called me, she said that her directors wanted to see the information relating to my mums case from the previous lawyer, before they made a decision as to whether they would fund my mums case or not. She explained that my sister would need to sign a mandate to allow this to happen.

Hopefully it will all happen quickly because you only have three years to take this type case to court. I called my sister.

My daughter helped me change my mums pad and then I walked my mum around the house. I then sat my mum on her chair in the livingroom – she must get awfully sore sitting for so long in her wheelchair.

I had to go to my sons parents evening – what a great report, I am really proud of him, what great feedback he got. On the way home I ordered a chippy for my children, it was too late to begin cooking.

My daughter fed my mum and then my children had their chippy. The carer arrived and we washed and changed my mum into her pj’s.

I was floored, It had been a busy day. I had a bath and then I walked my mum through to her room, my daughter helped me to change my mum and then we put mum to bed.

Bedtime for me. I read my book and fell asleep.

Yesterday 6th Oct 2015

I woke up at 6.45am. I woke my children and I checked on my mum, she was sound asleep. The children left at 8am. I checked on my mum again, she was still asleep. I decided to start my tummy crunchers and I completed the whole DVD. I was feeling really unmotivated and I found it really difficult to a) do the exercises properly and b) complete the whole DVD. I was delighted that I got through it and I felt great when I had finished.

The carer arrived just after 9am and we woke my mum up, I felt really bad getting her up out of bed this morning as she looked very sleepy, we washed my mum and we dressed my mum, she was quiet throughout the whole process. The carer gave my mum her breakfast and done all the other things that needed to be done with my mum, whilst I got washed and changed. We then put my mum into my car and I drove my mum to the day care centre.

Afterwards I went home. I was still feeling really annoyed about lots of situations surrounding my mum.

1. I have still not heard anything from the discretionary panel regarding the arrears that my mum is supposed to have accumulated, unknown to her, for her transport to the day care centre.
2. I still have not had any positive news stemming from my visit to the local MP regarding the afore-mentioned arrears, the assessed charges for transport to the day care centre, the fact that my mums upheld complaint, from when she went into a care home for 7 days and came out with around 28 bruises, is still not on the care inspectorates website and the fact that my mum cannot apply for a mobility car because she is a pensioner and not in receipt of disability living allowance.

I see black holes everywhere, which allows vulnerable people to be abused. I find it really frustrating that I cannot do anything to stop it from happening. It feels like discrimination, inequality and disjointed services are creating these black holes. Words that spring to mind are:

AGISM – YOU ARE A PENSIONER THEREFORE YOUR TOO OLD FOR A MOBILITY CAR
SOCIAL CLASS DISCRIMINATION – YOU CANNOT RECEIVE LEGAL AID UNLESS YOU CAN PROVE THAT YOU WILL RECEIVE SUBSTANTIAL COMPENSATION – MY MUM CANNOT HOLD A CONVERSATION THEREFORE SHE CANNOT STAND UP IN COURT AND EXPLAIN THE EFFECT HER STAY IN THE CARE HOME HAS HAD ON HER – SHE WILL NOT RECEIVE SUBSTANTIAL COMPENSATION (SO I AM TOLD). SHE WOULD HAVE TO PAY FOR A LEGAL BATTLE WHICH SHE CANNOT AFFORD IT.
INEQUALITY – STAYING IN A RURAL LOCATION MEANS MY MUM HAS TO PAY £56.90 FOR TRANSPORT TO HER DAY CARE CENTRE, OTHERS WHO STAY CLOSER DO NOT HAVE TO PAY THIS (SO I AM TOLD).
DISJOINTED SERVICES – THE CARE INSPECTORATE DOES NOT LIST UPHELD COMPLAINTS FROM VULNERABLE ADULT PROTECTION TEAM INVESTIGATIONS OF CARE HOMES. THIS MEANS CARE HOMES ARE NOT TRANSPARENT AND PEOPLE WOULD NEED TO KNOW THAT THEY WOULD NEED TO CONTACT THEIR LOCAL AUTHORITY AND GAIN INFORMATION VIA THE FREEDOM OF INFORMATION ACT REGARDING UPHELD COMPLAINTS CONNECTED TO THE CARE HOME THEY ARE LOOKING AT – PEOPLE IN GENERAL DO NOT KNOW THIS.

I was feeling angry and frustrated, I felt un-listened too and disappointed.

I also worry about people who are vulnerable. I am happy that my mum has her family around her and she has me too fight her corner – imagine she did not have this? What about the vulnerable people who do not have people looking out for them? – I worry……

Based on this I decided to telephone the European Union to seek advise on raising a case or a complaint. I was advised that before you can lodge a complaint/case that you need to complete all the compliant procedures on a national level. They advised me to call the inequalities services and the minister of health and care ombudsman. I contacted both. The inequalities services are an advisory service and they also advised me to contact the minister of health and care ombudsman. I contacted the minister of health and care ombudsman who said that they did not deal with Scotland and gave me another number to call which was for a Scottish ombudsman. I contacted them and they said that I needed to have a letter from the initial complaint saying, that I now had the option to contact the Scottish ombudsman, if I was not happy with the outcome.

TOTALLY CONFUSED.COM – I have so many complaints about so many different things – where do I start?????

I was also told during one of the above conversations that class discrimination is not written in the law/legislation (or something like that), therefore, no-one can do anything about it – what exactly does that mean?????

I contacted a new lawyer a no win, no fee firm who are now looking into my mums case.

My head was sore and I am wondering if things are deliberately made complicated for a reason, with that reason being that you do not pursue your complaints because you become to confused.

I collect my mum from the day care centre and take her home. The carer helps me bring my mum into my house.

I prepare dinner. I still have a sore head.

We all ate dinner and then the carer arrived and we  washed my mum and changed my mum into her PJ’s. I walked my mum for a while and then sat her in the livingroom.

I then collected my daughter from her vaulting class, she had lots of fun at it. I put my daughters dinner out and then I washed the dishes. I had a bath. I watched TV and then I went to bed feeling totally disheartened.

Yesterday 5th Oct 2015

I woke up at 6.45am. I woke my children.  I checked on my mum, she was awake. I raised her bed and I turned on her television, I also gave her a glass of water. I went back to the children. They left for school at 8am.

I began my morning exercises and I managed to complete my 50 minute tummy crunchers DVD – jeeze! it was hard to get motivated and complete the full 50 minutes – I always feel brilliant afterwards though, it is worth it.

I checked on my mum and she was fine, she was gazing out the window and she was looking quite content. I quickly tidied my children’s bedrooms and made their beds. I then prepared all of my mum’s stuff for her morning shower.

The carer arrives at 9.15am and we showered and dressed my mum. Whilst the carer was feeding my mum her breakfast I continued with my morning routine and I got washed and changed. The carer and I took my mum up to my car and began the normal routine of getting her into my car – it’s a terrible job and I feel so sorry for my mum,, it must be distressing for her, even though she keeps quiet during the whole process. I dropped my mum off at the day care centre, she appears to have lots of fun and activities there – they are a god send and so kind.

I then went home and began cleaning my house and doing the washing. After this was complete I studied, out came my books and notepad and I spent the rest of the afternoon studying, it felt good to be doing something different from my usual routine.

Before I knew it, it was time to leave to collect my mum. I collected my mum and then dropped off some milk and cranberry juice at my friend’s house. This made me late, which meant I was trying my hardest to stay within the speed limit on my way home I was late back, the children were home and the carer was waiting for me. The carer and I got my mum out of my car and into the house.

I began preparing dinner and then we all ate our dinner. My children washed the dishes as I finished feeding my mum. The carer arrived and we washed my mum and put her PJs on.

I decided to study some more……………

Bedtime – I feel nice and relaxed tonight.

Yesterday 4th Oct 2015

I woke up at 9.15am – A ‘long’ lie in for me today – How lucky am I……

I began working on my DIY project. I fixed the hole in the plasterboard, which I accidentally made yesterday, and I began fixing the shelves, I had major problems using the drill as the screws did not want to go in hmmmmmm! what a pain. I stood back and looked at the shelves and I had to think about other ways in which I could have constructed the shelves. I had completed too much to start again. I decided that I needed glue – this would do the trick and anything that wobbled would be fixed on with glue. I was hoping that this would work and the shelves would stay upright – probably not! I am thinking that when I have the money I will buy one of those pre-made shelving units and that this will save me a whole lot of bother. I am hoping that my pre-made shelves will last until then.

My sister leaves early today, she leaves at 10am, as she has something on today at her own home. Her head is still sore, but she thinks that it is beginning to get better. That is good!

I finish off what I am doing with my DIY project and then I put all my tools away. I need to let the glue dry before I do anymore – “thank god”, I am thinking – “an excuse to stop”…..

I walk my mum around the house and then I give everyone their lunch. I iron everyone’s clothes and then begin cleaning out my cupboards.

I changed my mums pad and then we had our dinner.

The carer arrives and we wash my mum and we put her pjs on. We sit my mum in her chair in the livingroom. I spend sometime sorting out my paperwork and attempting to download Windows 10 (total failure), it never worked. I decided to wait until Monday and call the Microsoft help line.

I walk my mum through to her bedroom and then I began the task of putting her to bed. I brush her teeth and then I put my mum’s television on – she looks happy and content.

I then began to sort out all my studying material. It is getting near that time where I have to start studying. I want to be able to go into my next placement with all the relevant knowledge in my head – this will most certainly make it easier for me.

I check on my mum and she is sound asleep. I put off her television and her light. I brush my teeth and go to bed.

Yesterday 3rd Oct 2015

A long lie – heaven.

I woke up at 9am. Yipee!!!! I made a coffee and I went back to bed – I read my book. I hear a lot of hustle and bustle downstairs and I am thinking that maybe I should go down and help, as my sister has a sore head. I popped down and asked my sister if she needed any help, she said, “no”. I went back upstairs and I changed into my outdoor clothes.

The boiler has stopped working – what a nightmare – the house is freezing and we have no hot water. I telephone a local plumber and he said that he would try his best to get out to fix the boiler today.

I try and complete my DIY project. This took me all day and I ended up making a big hole in the plasterboard in my kitchen, I did get some of it done though and I now have a few squinty shelves – I decided to give up and that I would continue with it tomorrow.

The plumber arrived and pressed the reset button on my boiler, I was mortified, the boiler began to work. I apologised with bright red cheeks – what an idiot. The plumber left looking very amused.

I made dinner

The boiler stopped working again. I pressed all of the reset buttons and the boiler remained quiet. My sister and I went online and we tried to find a solution for fixing the boiler – we gave up. I sent the plumber a text describing all the reset buttons that we pressed and asked him if we had missed one out.

No rely – Oh! No!

We sat in the livingroom and watched some television and we chatted about various things. I decided to go to bed early tonight as I still feeling exhausted from the events over the last few days.