Day 117 – Day 123

6th Jan – 13th Jan

6th Jan

I woke at 6.45am. I woke my children. I checked on my mum and she was fast asleep. My children left for school. I checked on my mum, she was still fast asleep. I cleaned my children’s rooms. The carers arrived at 9am. They washed my mum and they got her ready for the day.

I emailed my new placement schedule to my mums keyworker. This schedule reflected my new arrangements, whereby, my friend was going to take my mum to the day care centre.

I received a call from my local Councillor saying that the director of housing a community care from my local authority was going to review my mums case and that he would get back to me in a couple of weeks, either in person, or via my local Councillor.

I cooked lunch for my mum and I.

I cleaned my house and then spent some time studying for the pre-placement meeting that I am attending tomorrow.

I received an email from my mums keyworker saying that she had asked the OT to contact me, as the OT needed to discuss the transfers of my mum into and out of my car. She explained that in the OT’s risk assessment it states that I am meant to be the person putting my mum into and taking her out of the car and that she could not apply for the funding for the support for my mum until she received the assessment from the OT.

She also said that she would need to speak with my brother and my sister to see if they were happy with the plans. I felt exhausted and exasperated. I felt like screaming with frustration. I THOUGHT THESE SYSTEMS WERE MEANT TO SUPPORT NOT HINDER AND DISTRESS YOU aaaaaargh!

I emailed my mums keyworker back and said that I would call the OT in the morning. I said that it would be a private care firm helping my friend to get my mum into the car and that I thought that it was okay for the private care firm to make the decisions as to mum’s ability etc.., as per the normal 4pm help that I have been getting from the private care firm to help me get my mum out of my car. I also explained that I was still waiting for the mini bus drivers and also the private taxi firm getting back to me.

7th Jan

I woke at 6.45am. I woke my children. I checked on my mum and she was fast asleep. My children left for school. I checked on my mum, she was awake. I raised her bed and I gave her a glass of water. I switched in her TV. I cleaned my children’s rooms and then I got ready for the day.

Today I had a Pre-placement meeting to attend today. The carer arrived at 9am. I left to go to my pre-placement meeting.

My phone pinged as I was getting in my car. I had received an email from the OT. It was a lengthy email discussing the risk assessment that she had carried out on my mum last year. I drove to my pre-placement meeting. The meeting went well and I felt comfortable. During the meeting my phone kept vibrating, so much so, that I asked if anyone minded if I checked my phone. There was 10 missed calls, from various people, and one text message, my children were getting sent home as there was flooding in both the town where there school is and my village. Oh! Dear! I left the pre-placement and drove home.

By the time I arrived home most of the flooding had cleared.

I phoned the OT. The OT discussed the risk assessment and also explained that when she conducted training with the staff and although no-one had said, she was under the impression that the care staff felt pressured to do things with my mum that they should not do, like not use the equipment when moving and handling my mum. I said maybe she got that impression because when I feel my mum is okay and when I was helping do my mums personal hygiene that I did not use the equipment and the care staff stood around me as support. She also said that she was not going to support my friend helping my mum into and out of my car. I was felt furious and I went into a ‘rant’. The OT said she would speak with my mums keyworker.

I cooked dinner for everyone. We ate dinner. The carers arrived and changed my mum into her pjs.

Later that night I email the OT and requested that she carry out a risk assessment on my friend and the private care firm.

I also emailed my mums keyworker and asked her if she could put in for the funding based on my mum not going to the day care centre as I was feeling extremely anxious, worried and stressed about whether or not the funding would be approved.

My daughter helped me to put my mum to bed.

I went to bed and I could not sleep.

8th Jan

I woke up at 6.45am. I woke my children. I checked on my mum and she was fast asleep. My children left for school. My mum was still fast asleep. I cleaned my children’s bedrooms. The carers arrived at 9am. They washed my mum and got her ready for the day.

I began called various legal bodies to find out if I could build a case regarding the various breaches to my mums Human Rights. This became hard work as no-one seemed to be able to help or able to give me relevant information. It was another pillar to post event.

Eventually I contacted the Equality Support and Advice service, this was helpful. I discussed my concerns and spoke about how I felt my mums Human Rights had been breached and continued to be breached and the impact that I felt this was having on my mums life, my life and my children’s lives.

The breaches are:

Connected to the legislation surrounding legal aid, whereby, you need to be able to prove that you can sustain substantial compensation in order to receive legal aid. My mums solicitor said that due to my mums inability to give evidence he would not be able to prove that he could obtain substantial compensation and therefore believed that he would not obtain legal aid to go ahead with the my mums case against the care home group. Whilst in a care home my mum sustained 28 bruises over her body, she had never bruised before going into the care home and has not bruised since she has come out of the care home. Something to think about – she was only in the care home for seven days!!

Article 6 of the Humans Right Act “everyone is entitled to a fair and public hearing within a reasonable time by an independent and impartial tribunal established by law”. My mum can not receive a fair hearing, the legal aid law is a barrier to her defending her rights to be free from inhumane a degrading treatment

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Connected to the mobility scheme. My mum is 70 years of age and the Government using a blanket policy say that someone of pension age and above cannot apply for a mobility car. This is stopping my mum from participating in family life.

Article 8 ‘Right to respect for private and family life‘ 

Because I am a single parent of two children and because I cannot apply for a wheelchair access car via the mobility scheme, my whole families rights have become breached under Article 8 of the Human Rights Act. When I take my daughter to an activity my son has to stay with my mum. We cannot go out together as a family as we do not have the tools to do this, unless we heave and haul my mum into my car.

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Connected to the Charges and Contributions policy. The outcome of my complaint letter to my local authority stated that on a National level the Government says that a person of pension age and above should be able to live on around £170.00 a week. My mum is a pensioner, however, she also has a severe disability. If you take the extra costs associated with my mums care due to her having a severe disability then the estimated £170.00 a week is reduced drastically. Which means that my mum has a lower rate than the average amount that the Government say a person of pension age and above can live on.

Protocol 1 Article 1 states that ‘Protection of property’ ‘Every natural or legal person is entitled to the peaceful enjoyment of his possessions. No one shall be deprived of his possessions except in the public interest and subject to the conditions provided for by law and by the general principles of international law.’

My mum has been allocated the higher rate of attendance allowance to accommodate her extra care needs, however, this was not classed as disregarded income when the local authority worked out my mums finances. What I have been told is that my local authority have added a few pounds onto what the Government say a person of pension age and above should be able to live on and that due to this anyone claiming that they are falling into hardship needs to go through a discretionary panel.

Thinking back to when I spoke with the man from the financial assessment team within my local authority, he said to me that things such as expenditure on toiletries are capped. I put a figure down for what I spend on toiletries for my mum and he said that is okay as it is capped at £18.75 (or around that figure). If things are capped how can you ever show that your expenditure is high? I also put down £40 for petrol money for my sister who comes to my house fortnightly to allow me to have respite and he said that he did not think that this amount would be taken into consideration as my sister was family. Again, how can the local authority get a true reflection of your expenditure if the cap things and not consider things???

I contacted my local Councillor and asked him what he thought about me calling the director of housing and social care directly, he said that this would be a good idea. I asked for his name.

I received an email from my mums OT saying that we had already discussed the risks attached to my mum and that she would not be carrying out an assessment of my friend and the private care firm getting my mum into and out of the car. I cannot believe that the local authority are willing to pay a private care firm to isolate my mum in my house rather than help me pay for the transport to and from the day care centre, which is £56.90.

9th Jan

I woke up at 8.45am. The carers arrived at 9.3am, they washed my mum and changed her into her pjs.

I drove my daughter to her vaulting class. I drove home. I asked my son to help me stand my mum. I walked her round the house.

I made my mum and my son some lunch.

I cleaned the house and I ironed a pile of clothes. I then picked my daughter up from vaulting and dropped her at her friends house. My son kept an eye on his granny. I drove home.

I cooked haggis, neeps and mash with a white sauce, it was lovely.

The carers arrived and changed my mum into her pjs. My mum and I sat in the living room for a while and watched some tv.

My son helped me to walk my mum to her room. I changed her pad and then my son helped me put her to bed.

I went to bed.

10th Jan

The carers arrived at 9.30am. They woke my mum up, they washed her and then they dressed her. I gave my mum her breakfast. I wheeled her through to the living room and I turned on the TV.

I cleaned my house. An amazing thing happened today, as I was walking past my mum she reached out her hand to grab my hand, it might not seem like much to you, however, it has been a long long time since my mum has done something like that. So long ago that I could not even tell you when she last done something like that. I held her hand and rubbed her cheek and she laughed her laugh. I chatted with her for a wee while, I got the impression she wanted a little bit of contact and closeness.

Later my dad and his carer arrived, they are staying for a week to look after my mum and children whilst I am on a block week for university. I went to my car to put my case into my car to save me having to do this in the morning, when it will be cold, wet or snowing or even a mixture of these things. I broke my garden gate aaaaaargh!   What a hassle. I left the repair of my garden gate for another time.

I went to bed early as I was having to wake up at 5am the next day, I needed to arrive at the University at 9am, which is a three hour drive from my house.

I tossed and turned all night, I could not sleep.

11th Jan

I woke up at 5am. I drove to the University and by the time I got into my class I felt exhausted. I wanted to go to sleep. I sat all day in University and I struggled. I found it difficult to pay attention. I was also feeling worried that I had not heard anything regarding the funding for the support my mum is requiring whilst I am on my placement.

After University I drove to my accommodation. There was no-one in. I sat in my car and waited. Two hours later the person arrived. I settled into my accommodation. I had a shower and called my children. I went to bed and I fell asleep, a deep, deep deep sleep.

12th Jan

I woke up and I took a shower, I made a coffee and then I got dressed. I drove to University. It was nice spending time with other ‘able’ adults and talking with people who could communicate effectively, a big contrast from life at home. Regardless of this I was still missing my mum and my children and the usual rhythms of my family life.

All day I was constantly checked my emails to see if there was any news of my funding for the support that I need for my mum whilst I am on placement.

Nearing the end of the day I received an email from my mums keyworker saying that she was applying for the funding. I felt happy, at last it was going through and I would know the outcome tomorrow, at the latest.

Quite soon afterwards I received an email saying that the funding had been approved. Although I was extremely happy about this and I could now stop worrying about whether or not I was going to get the support for my mum whilst I am on my placement, I also felt baffled that my local authority are willing to pay around £400 a week to isolate my mum from her community rather than £56.90 a week to allow my mum to integrate with her community and attend her day care centre – it does not make any sense.

I am looking forward to starting my placement, however, I know my mind will be on my mum whilst I am on placement. I have put in for funding from charities and I am hoping that something will come through to allow my mum to attend the day care centre.

Day 103 – 116

22nd Dec – 5th of Jan

I have had a few weeks off over Christmas and New Year. It was chaotic yet ‘blissful’, at the same time. I hope everyone had a Happy Christmas and New Year.

On the 23rd Dec I took my mum and my children into our nearest city, so that we could do a spot of shopping. It was the first time in a long time that I had taken my mum out shopping. I have to say, my mum loved the shopping trip, she was bright eyed and laughed everywhere we went. We went to ASDA, we went to the main high street and we went into a shopping arcade. It was busy and I worried that it would be too much for my mum. My children, they were a god send and they helped me get my mum out of the car and then back into the car and then back out and back in. It was hard going for us all, however, we managed it and we had fun at the same time.

When we got back home I checked my email, I had an invoice from the local authority saying that my mum was required to pay the £1900 odds, Happy Christmas to you too, I thought.

I had received a letter from the Ombudsman saying that they had too many complaints and not enough complaints officers, however, they would hopefully be able to allocate my complaint, regarding the bruises my mum sustained in a care home, by the end of January. I am thinking that this means they are taking the complaint on board, so regardless of the delay, I am happy.

I also received a letter from Audit Scotland which, outlined some failings they found, by my local authority. It stated that my local authority are going to be reviewing the Charges and Contributions policy in 2016. So again this feels like positive news.

I contacted the home care department and I cancelled the Christmas day visits from the carer’s, as I felt that it would be good to have a break from them coming to my house.  My call went on to voice mail, I left a message.

On the 24th Dec I prepared Christmas dinner, I then delivered Christmas cards and presents to friends around my area. It was just small items, its the thought that counts. I missed a call from the OT and I received a call from the home care department. They wanted confirmation of my Christmas day cancellation.

Christmas day was wonderful, my children did not get a lot, however, they were happy and enjoyed ripping off the Christmas paper and seeing what their presents were. My children are fantastic, they had bought me some presents too. I felt extremely sad inside and I wished that I could have got them more. I smiled though and I pretended that I was happy and joyful, realistically I felt depressed and like a failure.

My daughter went to her friends house on boxing day, my son was in his room. I put together my complaint for the ombudsman, with regards to the issues surrounding the arrears that my local authority say my mum has and also the expected £56.90 a week transport costs. I began this at 10am and by 9pm my head was sore.

The next day I meet my sister in my nearest city, she was taking my mum to her house for a few days to give me a proper break. It was weird when my mum was away I kept getting urges to check that she was okay, it was as though she was still in my house.

My mum and my sister and her family came to my house for the New Year. We had a lovely time.

It is the 5th of Jan and I receive an email from my mums keyworker asking if there is going to be any amendments to my placement schedule for support for my mum whilst I am on my placement for university. I emailed back saying that there would be as I had found someone that was willing to take my mum back and forth from the care centre and that I would email her back later in the day.