28th October – 3rd November

Day 46 – Day 52

28th October

I woke up at 6.45am. I woke my children and then I checked on my mum, she was awake, I said good morning mum and smiled at her, she looked at me directly in the eyes and she smiled back at me and then she laughed. What a nice start to my day. I raised my mums bed, I put on her television and I gave her a glass of water.

My children left at 8am.

I went to my children’s rooms and I picked up all of the items lying about their floors. The carers arrived at 9am and began getting my mum ready for the day. Whilst they were doing this I made myself a cup of coffee. I am still feeling guilty at not being able to help. Today my mum has a day off from the day care centre.

I received a call from my mum’s keyworker. She called to tell me that the local authority care workers are no longer allowed to help me get my mum into my car in the morning, as a few of them had highlighted that they felt that this was a risk to both them and my mum.

I asked if the private care firm could still get my mum out of my car in the evening and I was told that they could as they had not raised any issues or concerns. Given this, I asked if they could help me in the morning to get my mum into my car and my mum’s keyworker said that she did not think that the service could support this (I am assuming that this means financially, I might be wrong though, I should have asked!). I wondered why she said that they could still help me in the evening, if the service could not support them helping me in the morning – I am confused!!

I said to my mum’s keyworker that, “if this was the case, then I would need to ask my children to help me get my mum into the car in the morning before they left for school at 8am”. My mum’s keyworker said that she did not think that this was a great idea, given the risks to my mum and the people putting my mum into my car. I explained that, “my mum really benefited from the day care centre and that I was not going to allow her to become exiled from the community”, I said that “if my mum never went to the day care centre she would be like a prisoner in her own home and that I was not going to let this happen”. I said that “given this, my children would be helping me to put my mum in the car”. My mums keyworker told me that she had asked the OT to come out and assess my mum getting into and out of the car, however, she said that the OT said that it was pointless to come out and assess my mum because if the carers said it was a risk then it is a risk.

I am furious, so angry at the system and the negative effect it has on people’s lives.

My mum’s keyworker said that she had received an email from my sister regarding the complaint which was raised when my mum sustained 28 bruises within a seven-day period within a care home. The email my sister sent was asking my mum’s keyworker if she could send out a letter confirming the complaint, the outcome, the actions taken against the care home and also giving her the option to escalate the complaint, as she had never received a letter confirming these points .

My mum’s keyworker asked me if it was the case conference report that my sister was looking for. I explained that both my sister and myself were told that we could not attend the case conference, which was held when they were investigating the bruises that my mum sustained in the care home, because during the case conference they were going to be discussing other residents in the care home. I explained that this was not what we were looking for.

I explained that there was a meeting, which was held at the local authorities offices and that the people who attended the meeting were as follows, the social worker who conducted the investigation, the care inspectorate, the care home manager, myself, my sister and my mum. I said that during this meeting the outcome of our complaint was discussed and we were asked if we were happy with the outcome of the complaint and that we replied that we were not happy with the outcome. I said that following this meeting we should have received a letter outlining the complaint, the outcome and giving us the option to escalate the complaint to the ombudsman. My mum’s keyworker said that she would look into it.

My feelings on this are that I am totally and utterly frustrated, it feels like a catalyst of errors are taking place, all of which, are compounding the many issues that have and are still taking place. Why can people not just do things properly? Why, when a mistake is made, are people not being held accountable for their mistake? Why can people not take ownership of issues and problems? Aaaaaaargh!

How can we contact the ombudsman when we have no letter saying that we have went through the complaints procedure with our local authority???

In all of this where is my mum?

Once again she has been lost, she is not at the centre. I wish people would open their eyes and see the vulnerable, beautiful lady who needs protection, interaction, happiness, respect, dignified treatment, equality and peace in her life – not this!!!!!!

I make lunch for my mum and I worry and I wonder what I can do to ensure my mum can go to the day care centre, without, me having to burden my children further.

I received another call from my mum’s keyworker and she told me that the private care firm would be coming to my house with a physio to assess my mum getting put into the car. I said that his was fine.

I received an email from my mum’s keyworker with a document for applying for funding. I sent this to my sister and asked her to fill it in as it was for a person who has an idea to help support a carer or project. She said she would.

What a horrible day today. I am feeling miserable and tired and fed-up. I want to crawl into bed and hid under my duvet and sleep for a week.

My children arrived home from school. I cooked dinner and then we all ate dinner. My children done the dishes and I finished giving my mum her dinner. One carer arrived and then she left as the other carer was not coming until later in the evening. Later, the second carer arrived and I helped her to get my mum ready for bed. What a mess, my arm is only getting a rest in the morning, I wished that they would sort out the times, so that both carers arrived at the same time, what a waste of staff and what a waste of money. We put my mum to bed. I then helped my children with their homework.

My children and I watched television for a short time and then we all went to bed.

29th October

I slept in, I never woke up until 7.20am aaargh! I woke my children telling them that they needed to. “GET UP NOW”, “BECAUSE I HAVE SLEPT IN”. Bleary eyed and in no rush, both my children got up on the first shout – a miracle had occurred! – I should sleep in more often! Ha! Ha!

I checked on my mum and she was still asleep.

My children left at 8.00am, the poor wee things they looked sleepy going out the door. I checked on my mum  again and she was still asleep. I cleaned my children’s bedrooms and then I got myself ready for the day. At 9am the local authority carer arrived and then the private carer arrived. I asked the local authority carer if she was aware that she could no longer help me put my mum in the car. She said “no” she had not been told anything about this. She asked what had happened and why I had been told this. I explained to her the conversation I had with my mum’s keyworker the day before. She said that she has been the one putting my mum in the car all week and that she had not raised any concerns. The private carer said that she could help me put my mum in the car for the rest of this week. She further explained that in the past she has used a standaid to put a person in a car. I asked when she would be bringing a physio to my house to assess my mum getting put in the car. She explained that she had been on holiday and had not heard anything about this.

The carers woke my mum and got her ready for the day. The private carer helped me put my mum in the car. I took my mum to the day care centre. I am still feeling fed-up, I cannot believe how disorganized and underhand my local authority are being. I wonder if all this has come about because of my story in the local newspaper.

After I dropped my mum off I went to see my friend, I took her milk and prunes. She asked me in for a chat and I ended up being there until the afternoon. We were chatting and putting the world to rights.

I drove to the day care centre and I picked up my mum. Whilst I was in the daycare I enquired if they would be able to store a stand aid there to help get my mum in and out of the car. They said they would get back too me.

I have been thinking all day about all the issues I have with services and I am thinking that I should contact the care inspectorate and raise a complaint about the way my family and myself are being treated.

I list the issues in my mind:

Communication.
Not being treated with dignity and respect.
Human error and how this has been processed and dealt with.
Being treated in a humiliating and degrading way.
Isolation and exclusion.
Inequality.
Creating unnecessary stress and anxiety.
Potential poverty.
Unsupported

I decided that I would ponder on these issues and see how I felt later.

On the way home I received a call on my mobile phone, it was a local number, I stopped the car and answered the call. It was the OT and she said that she was asked yesterday if she could risk assess my mum getting in and out of the car and if asked if she could come and assess my mum today. I said that this was fine. I go on to tell her about my thoughts on using the standaid, for getting my mum in and out of the car. She said that she did not think that I would be allowed to do this and that she would need to check to see if this would be okay. She asked if she could telephone me back in a few minutes, I said that this was fine. She called me back and I was told that there was nothing saying that I could or could not use the stand aid to get my mum in and out of the car – in my head I was thinking great, progress and why the change of heart, as I thought that the OT was not going to assess my mum.

When I arrive home I check my landline, I have numerous missed calls from the OT.

The carer arrived and I explained the situation regarding the OT’s visit. The OT arrived and we began the process of getting my mum out of my car using the standaid, we managed. I asked the OT how she felt it went and she nodded her head in an affirmative manner. She said we would need to refine the procedure for getting my mum into and out off the car and asked if she could come in the morning again. I said that this would be fine.

The OT is lovely and makes you feel relaxed and comfortable, however, when a person is staring at me when I am working with my mum I feel embarrassed and awkward – it is a horrible feeling.

Myself and the carer put my mum on the commode and then after a while we changed her pad and walked her through to the livingroom and sat her in her chair.

My children arrived home. I made dinner and we all ate dinner. The carer arrived and then left as the other carer was not due to arrive until later that night. Like yesterday.

The second carer arrived and we changed my mum into her pjs and put her to bed.

30th October

Oh! Jeeze! I done it again I slept in, the time is 8.10am and my children have missed their bus. I never sleep in – what on earth is going on! Like yesterday, I woke my children in a panic and rushed them through the process of getting dressed etc… I left my mum in bed and I drove my children to school. What a morning.

I am feeling dizzy this morning. Twice this morning my head has started spinning and I have had to stop doing what I have been doing – what a horrible feeling, I wonder why this is happening, but not for long, as I have too much to do. I wonder if it is blood pressure issues due to the stress I am under.

I arrived home and went into my mums room, she was still asleep – I am thinking – phew!, a relief! – what a panic I am in. I went into the kitchen and I am thinking something is not right, I realise that my kitchen is too quiet, I cannot hear my boiler. I open the boiler and it is on but not working. Aaaaargh! What else can go wrong. I go through the process of resetting the boiler and trying to ignite it and nothing happens. I try again and my boiler begins making a high-pitched screech – what a fright I got – I jumped back and quickly switched the whole system off. The house is now freezing and I have no hot water, a major problem as my mum needs a shower. Aaaargh! I am ultra stressed out.

The carers arrived, I explained that the boiler was not working, I switched it on again and it made no noise, I pressed all the reset buttons and the screeching began again, I jumped and I quickly turned off the whole system. I sent, a plumber I know, a text message asking him to call me asap.

The carers got my mum ready, they boiled the kettle so that they had hot water to wash my mum. Whilst they were doing this I cleaned my house. Once the carers finished getting my mum ready they leave.

The plumber called me and I explained what was happening with the boiler, he said that he would try to get out to my house today. I am praying he will make it.

The OT arrived, we then waited for the carer from the private care firm to arrive. The carer was 20 minutes late, once she arrived we began the process of getting my mum into the car. After going through the process of, getting the standaid sling on my mum and then my mum attached to the standaid, we managed to get my mum into the car. It was a cold morning and I had a cold house, my poor mum must have been freezing. It would have been so much easier just to wheel her into a car. I wish that the local authority would re-look at their policy or the legislation which is affecting people in such a negative way.

The OT was happy with this process. The OT asked if she could come to the day care centre with me so that she could assess my mum getting out of the car there. I drove both myself, my mum and the OT to the day care centre. The lady from the day care centre and myself managed my mum out of the car and we put her into her wheelchair. I asked the OT how she felt that went and she thought it went fine. I asked what her assessment was going to say and if the local authority carers would be able to help me again, getting my mum in and out of my car. She said this would be fine and that she would be writing her assessment today.

I went home and began the washing,  drying and ironing. During the day I received a couple of calls from the OT and we discussed the assessment and refined the details. It was agreed that we could manually put my mum into and out of the car and that the local authority carers could help with this. I explained to the OT that I was hoping that this was a short-term solution due to how undignified that this whole process was for my mum.

I continued with my chores, during my chores I became dizzy again. I sat down for five minutes.

I went to the day care centre and I collected my mum. Once back home, the carer helped me get my mum out of the car. When I was getting my mums feet out of the foot well of my car a shooting pain went down my arm, enough to make me pull away and wince, my arm kept throbbing after this, however, I had to continue and I went back to helping my mum. My children arrived home. The carer and I took my mum into my house, we put her on the commode and then we changed her pad, we then put her into her wheelchair.

I began making dinner. The plumber arrived with his daughter and was at my house for an hour and a half. He fixed the heating whoop! whoop! I am happy – we have heat again – yipee!

I gave my mum her dinner whilst the plumber fixed my heating system.

As soon as the plumber left, I took my daughter to a Halloween party, she was over an hour late. I drove back home. A carer arrived and then left as the second carer was not arriving until later.

I asked my son to cook his own dinner (egg and chips). I needed to sit down for two minutes, what a day, I was feeling exhausted, run down and drained. I wanted to sit silently in my room and hear no noise and see no people, just for a short period of time. It felt good.

The second carer arrived just as I was leaving to pick up my daughter from her Halloween party. Kindly, she waited for me to return home. My arm was still throbbing.

As soon as I arrived back home I helped the carer wash my mum, put her pjs on and we put her to bed.

I am feeling extremely flustered and hungry and sick.

I decide to look for the legislation or policy that has caused me all this hassle and distress. I find it, it is the contributions policy. I read it.

Once again I am seeing words that reflect the opposite of what is happening, words such as

Not to be exiled from your community
Not to enhance poverty
Human rights
Equality

http://www.pkc.gov.uk/CHttpHandler.ashx?id=32456&p=0

I am annoyed and angry, what a contradiction and what a hypocritical document, if ever i have seen one… The laugh is that the local authority does not have to ask for a contribution. I wonder if this is why I am being asked to bear my soul to the financial assessment team. I am thinking is that really necessary, given my circumstances. Whatever happened to diversity and looking at each person’s circumstances individually.

My mum lives in a family unit. She is not a lady living on her own, surely common sense would indicate that the financial impact will be different….. Or is that just me over thinking matters?? Who knows. Our family unit are all living on a low-income – how can we possibly overspend? I sometimes wonder how the Government manage to work out the cost of living for individuals living in the ‘real’ world and come to such a low figure.

I go to bed and I go to sleep.

30th October

I woke up at 6.45am. I woke the children and I checked on my mum. She is asleep. The children leave at 8am.

I cleaned my children’s rooms and then I checked on my mum again. She is still asleep. I made myself a coffee.

The carers arrived at 8am. They go and get my mum ready for the day. Whilst they are doing this I got myself ready. We gave my mum her breakfast and then we wheeled my mum to my car. Once my mum is in the car I drove her to the day care centre. The lady from the day care centre helped me to get my mum out of the car and took her into the day care centre.

I drove home. I decided that my house needed a thorough clean. I began. What a mess and what a lot of dust. Once I have cleaned the house, from top to bottom, I took my dog for a walk. Peace and quiet and a lovely fresh day. It began to rain, I love the feeling of the rain on my face, it clears my head.

I drove to the day care centre and I picked my mum up, I drove her home. The carer was waiting for me. We took my mum into the house and we put her on the commode, then we change her pad and we walked her through to the livingroom  and sat her in her chair.

My children arrived home.

I made dinner and we all ate dinner. My children done the dishes whilst I gave my mum the rest of her dinner. One carer arrived and then she left as the other carer was not due to arrive until later. My daughter, my mum and myself sat in the livingroom and watched television. The second carer arrived and we got my mum up and walked her through to her bedroom, we washed her and change her into her pjs and then we put her to her bed – she was tired tonight.

My daughter and I had a lazy night and watched a few movies, my son, as usual was on his PS4.

Time for bed.

31st October

The carers arrived at 9am. Both these carers were scheduled to come to my house this evening, however, both at different times, between them they arrange a time to meet at my house so that they can get my mum ready for bed. Whoopee! my arm will get a rest.

The carers left. I gave my mum her breakfast, I brushed her teeth and I brushed her hair. I took my mum through to the livingroom so that she could watch television. I cleaned the house and then I put a washing on. I then began to work my way through my ironing pile – It was only a small pile, this makes me happy as I will get through it quickly.

I finished the ironing and then I began making our lunch. My mum, my children and I ate our lunch. I asked my daughter to help me put my mum onto the commode, I left her there for twenty minutes. I asked my daughter to help me put a fresh pad on my mum. I walked my mum through to the livingroom and sat her in her chair.

I began preparing for dinner. I walked my dog.

When I returned home I decided to sort out my mums wardrobe, as it had been looking quite messy, for quite a while now. After this I decided to fix the shelf in the bathroom, out came my power drill. I tried doing this myself and I could not because of my sore arm. I asked my son to help me. He held the shelf up whilst I drilled the screws into the holes and through the wall. It worked first time, the shelf is up and is stable (I wonder how long it will last before it crashes to the floor, I am not very good at DIY).

I finished making dinner and we all ate dinner. I done the dishes tonight to give my children a break. Both carers arrived and they got my mum ready for bed. I asked them just to put my mum to bed as she was looking extremely tired. My children got dressed for Halloween and went down to our local village tricker treating. I sat at home and watched a movie. Peace and quiet again. Heaven. What a relaxing day, I wish everyday was like today.

My children called and asked me to pick them up from the village. I drove down to the village and then I drove them home. My house went from a quiet sanctuary to a wild party full of Zombies and sugar loaded children. Eventually my children settled down and drifted off to their rooms. I watched another movie. I told my children that it was time for bed. I checked on my mum and she was sound asleep.

Bedtime for me.

1st November

The carers arrived at 9am, they got my mum ready for the day. The carers left. I gave my mum her breakfast. I brushed my mums teeth and I brushed my mums hair.  I decided to stay in my pjs today, I am thinking that I will have another relaxing day. The sun was shining. I pushed my mums wheelchair out to the garden, I wrapped a blanket round her legs, her poncho is on and her hat is on, she looked as snug as a bug in a rug. She was smiling and she was chattering.

I began to prepare lunch. We ate lunch and then I done the dishes.

Yesterday I received a letter which I had requested from the Scottish Hydro outlining what my annual bill was for 2014-15. I located my heating fuel bills, the only heating bills I found were dating back to 2013, I was worried that these bills would not be suitable for the discretionary panel, but it is all I have. I located all my car maintenance bills for the year 2015. I began the process of scanning these bills into my compute,r so that I could email them to the financial assessment team as evidence for the discretionary panel. So that they can assess whether or not my mum needs to pay the arrears that my local authority say she has and the ongoing £56.90 transport costs, if this service is utilized again.

I could not get my scanner to work and I ended up having to download updated software, it took me hours to sort everything out and scan these documents. I am now fed-up and I am feeling harassed and annoyed. I do not see why I have to send this information anyway, which makes me feel even worse. Eventually I finished scanning all the documents and emailing them to the financial assessment officer at my local authority.

During this the carer arrived and we put my mum onto the commode, we left her for twenty minutes, we changed her pad and we walked her through to the livingroom, we sat her in her chair.

I began to prepare dinner. My family and I ate dinner, my head was sore.

Both carers arrived and they got my mum ready for bed. I asked them if they could put my mum into bed as I was going to have an early night.

Once the carers left I began getting myself ready for bed. I said goodnight to my children and I went to bed.

2nd November

I woke up at 6.45. I woke my son, my daughter had spent the night at her friend’s house. I checked on my mum and she was still asleep.

Only one carer arrived. I asked her if she knew who the second carer was, she was unsure. She called the office. There would be no second carer as all services where at full capacity. I contacted the office and explained that I had further damaged my arm and it was extremely sore and I said that I might not be able to manage my mum. I was told that they were trying their best and that they would be in contact when they managed to arrange a second carer to come. What a nightmare. I am hoping that it is not to painful for me when I help the carer with my mums personal hygiene.

We took forever getting my mum ready as I was scared to put any weight on my arm, for fear of the a shooting pain, I felt terrible that I was holding the carer back, she ended up running late.

I received an email from the financial assessment officer saying that the next discretionary panel is going to take place on the 16th of November and saying that he would be grateful if I could get the additional information to him before this date. He also asked me to confirm if I want the discretionary panel to consider just the arrears or the arrears and the new charge for transport of £56.90. In my head I am thinking, what the hell!!!! why can’t these people take notes? why on earth am I having to supply such detailed information. I am annoyed – again!

I drove my mum to the day care centre, I dropped her off and then I drove home. I decided that I needed to deal with these issues directly, I have had more than enough, I am feeling victimized, I am feeling sad for my mum and I am fed-up frowning and being annoyed.

I telephone the ombudsman and explained to them that I wanted to escalate a complaint that I had raised a few years ago with my local authority. The complaint was relating to the bruising my mum received in the care home she stayed in for one week.

I then contacted the care inspectorate and raised a complaint against my local authority in connection to the arrears that they say my mum has and the effect that this has had on my mum, myself and my children. During this conversation I get upset and I need to excuse myself for a few minutes. I am mortified. I go back onto the telephone and continue my conversation, my cheeks are red, I am feeling very embarrassed – it must all be getting too much for me, how many times do I have to discuss my issues before something is done. I feel deflated, but I will push on.

I then contacted my local authority and asked for them to send me a letter outlining my complaint, the outcome, the actions and giving me the option of contacting the ombudsman. The girl I spoke with said she would need to escalate it to her supervisor.

The post came and I had received a letter from my local MPs office. The letter was regarding why I could not apply for a mobility car for my mum. It goes without saying that this was a disappointment (the letter did say I would be disappointed with the response – the letter was correct). I contacted the MPs office to voice my disappointment and to highlight a couple of issues. The man I spoke with was lovely, really upbeat and sympathetic. Our conversation turned to the contribution policy and the £56.90 that my mum is expected to pay for transport. He said he would look into it and that he would get back to me. I have to say he made me feel positive and confident, what a nice feeling when everything has been feeling negative and depressing. A good point which I attempted to articulate and the man from the MP’s office articulated correctly is that everyone seems to be forgetting that there is a human element to this, when people are looking for evidence and pushing paper in their office, my mum is suffering.

My sister called me and said that she had received an email from my mums keyworker saying that they could not supply a letter outlining our previous upheld complaint.

Whats that all about?  You raise a complaint, not just about the weather, but because your mum sustained 28 bruises in a care home. The complaint is investigated. A case conference takes place, which includes the police, a district nurse, the care inspectorate, someone from the vulnerable protection team and the care home manager, and you are not invited to attend. You attend an outcomes meeting and are given an outcome and the care home has actions put against it and yet you cannot receive a letter verifying this meeting – I am glad that I contacted the ombudsman.

It was time to collect my mum. I drove to the day care centre, I collected my mum and I drove home. On route I saw my son and I picked him up, he helped me get my mum out of the car, the carer arrived and we changed my mums pad.

I made dinner and we ate dinner.

I done the dishes and then the carer arrived, we get my mum ready for bed and then we put my mum into her bed.

I helped my son with his studying. I watched television for a while and then I went to bed.

3rd November

I woke up at 6.45am. I woke my children. I checked on mum and she was awake. I opened her blinds and I put on her television and then I gave her a glass of water.

My children left at 8am. A carer arrived at 8am. I asked the carer why she has arrived so early and she said that this was the time on her sheet. She explained that she contacted the office the day before and said that the time was too early as she needed to help me get my mum in the car. We showered my mum and got her ready for the day. The carer contacted the office and they told her to hang around until 10am to help me get my mum in the car.

At 10am we pushed my mums wheelchair up to my car, we put her in. I drove my mum to the day care centre. I then drove home.

I was feeling extremely anxious about the radio interview with Kaye Adams today regarding my blog, I received a call from Kay Adams representative, who told me they were running late and that they would call me back shortly. It ended up that I was only on radio for a few minutes. I felt disappointed as I had so much to say. These things happen. I was delighted to be able to highlight my blog, that was a bonus.

I spent the rest of the day relaxing at home, I do nothing all day, no cleaning, no washing,no cooking, no phoning, no talking. I chill.

I cancelled the carer in the afternoon as I needed to collect my son from school, he was on a school trip and was late getting back to the school and missed the school bus.

I collected my mum and then I collected my son and his friend. I dropped my son’s friend at her vaulting class, the one which my daughter attends. I drove home. My son helped me get my mum out of my car, we took her into my house. I made dinner.

I received a call from my local authority, the complaints department. The lady on the phone said that she was sorry to inform me and that she has looked through her files and that we did not make a complaint when we phoned regarding the bruises my mum sustained in the care home when she was there for a weeks respite. We spoke on the phone for sometime. I was furious. We spoke about the whole issue. I kept highlighting the lack of communication from our local authority and the fact that if when we phoned to register our complaint, that if they felt it was not a complaint, that they should have informed us about this. I spoke about the case conference which took place and the fact that we were not allowed to attend it, when in actual fact we had a right to attend the case conference. The lady replied that possibly they had changed the case conference to a network meeting and that is why we were not allowed to attend. This made me mad. I said to her, “this is what I mean, exactly what I have just been speaking to you about, you cannot just go and change meeting names to suit yourself. I was so angry.

The outcome was that the lady from my local authority asked me to ask the ombudsman to contact her direct to see if there was a way that our complaint could be escalated to the ombudsman without having gone through the complaints procedure.

When my daughter arrived home we ate dinner. My head is sore.

The carer arrived and we got my mum ready for bed. We walked my mum into the livingroom and then we sat her in her chair. My head is still sore.

Later my daughter helped me walk my mum through to her room, we changed her pad and put her to bed.

My daughter and I sat for a while and we talked about her day. Bedtime now. We went to bed, me with a sore head.