Day 82 – Day 88

2nd Dec – 8th Dec

2nd Dec

I woke up at 6.45. I looked over at my bedroom window and it was covered in snow, more snow uurgh! my children will be off again. I snoozed my alarm and I fell back to sleep. My alarm buzzed, I turned it off and I went downstairs. I looked out of my kitchen window – no snow! I must have been dreaming. I woke my children. I checked on my mum, she was fast asleep. My friend woke up and made a cup of tea, she was delighted as it looked as though she would be able to go back home today.

My children left at 8am. They both looked grumpy.  I began cleaning my children’s rooms.

The carers arrived at 9.30am, they washed my mum and dressed my mum. My mum had a bowel movement this morning and afterwards she looked extremely unwell.  One of the carers blow dried my mums hair and then she feed my mum her breakfast, it took quite a while, as my mum was eating very slowly and kept falling asleep whilst she was eating her breakfast. After breakfast the carers sat my mum in her chair in the living room. The carers left. I placed a blanket over my mum and she fell asleep in her chair.

I began preparing to sand and paint my kitchen cupboard. Whilst I was painting I heard my mum laughing a giggling. I walked through to the living room and she was sitting pointing at the floor and laughing, she looked better, her cheeks were rosy. I was happy to see her looking more perky. I made my mum a cup of tea. I sat with my mum and gave her tea.

I prepared lunch and then we ate lunch. I washed the dishes. I brought in the stand aid and began the task of changing my mums pad.

I went back to painting. My friend arrived, I made her a cup of tea. She left and I continued to paint. Once I had finished painting I cleared up all my painting gear and made a cup of tea for my mum and I.

My children arrived home from school. I asked my daughter to help me change my mums pad. Once this was done my daughter helped me to walk my mum through to the living room and we sat her on her chair.

I made dinner and then we ate dinner. I asked my children to wash the dishes.

The carers arrived, they washed my mum and put her pjs on, I asked them to put my mum to bed as she was extremely sleepy again.

It had been a fairly stress free day today, I felt relaxed and I was delighted with my painting, the kitchen looked so much better.

3rd Dec

I woke up at 6.45. I woke my children, My daughter was complaining about her ear saying that it was extremely sore. On checking her ear I noticed a lump at the back of her ear. I checked on my mum, she was fast asleep. My children left at 8am. I cleaned my children’s bedrooms. The carers arrived at 9.30am. They washed my mum and changed her into her clothes. Whilst they gave my mum her breakfast I got changed for the day.

The carers helped me to wheel my mum up to my car. We carefully put my mum into my car. My arm hurts, it is really really sore today and I feel very tired. I am not long up, should I really be tired I ask myself.

I drove my mum to the day care centre. The lady from the day care centre helped me to get my mum out of the car. I was thinking that I am not going to be able to do this for much longer, due to the pain I am getting in my arm and shoulder, it is too much for me to get my mum into and out of the car.

I drove home. I cleaned the house and then I took the dog for a walk. When I arrived back home I began to prepare dinner for everyone.

I drove to the day care centre to pick my mum up. I asked the lady in the day care centre if she could find out if my mum could use the community mini bus to take her to and from the day care centre. She said she would look into this for me. We began trying to get my mum into my car. What a nightmare. Probably because my arm is sore we never managed to put my mum onto the car seat properly and she nearly ended up on the ground. I had to hold my mum whilst the lady from the day care centre went and got someone to help us. After a lot of heaving and hauling we managed to position my mum properly on the car seat and get her into my car – very distressing for everyone, especially my mum. My arm and shoulder feels as though they are about to fall off! I am still tired! and I am fed-up!

I drove home. When I arrived home the carer was waiting for me, she helped me to get my mum out of the car and down to my house. My children arrived home.  I asked my son to help me pull my jumper off as I was finding it too sore to do myself. The carer left.

I put everyone’s dinner out, we ate our dinner. I feed my mum as I feed myself. I asked my children to wash the dishes whilst I continued to feed my mum. I then asked my daughter to help me get my mum up from her wheelchair. We walked my mum around my house and then we sat her back in her chair.

The carers arrived and changed my mum into her pjs and then they sat her in the living room.

Later, I noticed that my mum was awfully sleepy looking, I asked my daughter to help me to walk my mum through to her bedroom, we changed her pad and we put her to bed.

I had a bath, I was still feeling very tired. I checked that my children were ready for their bed and then I went to bed. I fell asleep very quickly.

I woke up through the night and I was feeling nauseated and my shoulder was sore, when is this pain going to go away? I wish I felt well.

4th Dec

I woke up at 6.45. I woke my children. I checked on my mum, she was fast asleep. My daughter asked me to call the doctors for her as her ear was still sore. My children left at 8am. I cleaned their bedrooms. I telephoned the doctors and arranged an appointment for my daughter. The carers arrived at 9.30am. They washed my mum and changed her into her clothes. Whilst they gave my mum her breakfast I got changed for the day.

The carers helped me to wheel my mum up to my car. We carefully put my mum into the car.

I drove my mum to the day care centre. I spoke with the lady in the day care centre and I asked her if she managed to speak with the mini bus drivers. She explained that the mini bus would be able to pick my mum up and drop her off but it would cost her something in the region of £50 a week. How depressing, we cannot afford this amount.

I drove home, I was feeling let down, fed up and depressed. What a country, life is all about money, not people!!!

Once home I cleaned my house. I drove to my daughter s school and picked her up for her doctors appointment, whilst I was at the doctors I picked up a card for a self referral to physio therapy. I called. They began asking me questions, “have you had a sharp pain in your stomach or lowerback”, “have you had CANCER” aaaargh! I do not want to hear that word again. Now I am thinking, what if! Given that they thought I had cancer earlier this year due to severe stomach pains. I am glad that I have booked an appointment to see the consultant again. Once my daughter had finished seeing the doctor I dropped her back at school.

I drove home and I went for a sleep.

I woke up and I realised that I had slept in for picking my mum up from the day care centre. I rushed out the house and drove to the day care centre. The lady at the day care centre was waiting for me, we took my mum out to the car and then I drove home.

The carer was waiting for me, she helped me to get my mum out of the care. The carer was full of beans and I didn’t feel like chatting, I just wanted her to leave. My children arrived home and then the carer left, she is lovely, however, today I had no inclination to talk, what a bore I am. I felt bad.

I made our dinner and then we ate our dinner and then my daughter went to her friends house for an overnight stay. The carers arrived and changed my mum into her pjs, I asked them to put my mum into bed. I sat in the living room feeling fed up and bored and sore.

5th Dec

I slept in, I woke up hearing the dog barking and barking and barking, I flew out of my bed and I ran downstairs. The carer was standing at my front door, it was pouring with rain. I opened the door and let her in. The carers began to get my mum ready for the day. I made myself a cup of coffee. Jeeze! I hate sleeping in. I was totally disheveled.

The carers left, I gave my mum her breakfast. My daughter had a horse riding lesson today and I had to pick her up from her friends house at 10.30am, the time is 10.20am. I went up stairs and got myself ready for the day. I woke my son and I asked him to look after his granny. The time is now 10.40am. I am running late. I drove to my daughters friends house and tooted my horn. My daughter rushed out the door and hopped into my car. Off we went.

The weather was atrocious. It was raining heavily and the river was practically bursting its banks in some places, in other places it had. My daughter noticed two horses in a field which was quickly filling up with river water. We stopped at a house, I told the person who answered the door, that the horses were in a field which was filling up with river water. She explained that the owner of the horses was trying to get all his animals to safety. We dialled the non emergency number and made them aware of the flooding fields and the trapped horses.

We arrived at my daughter’s lesson, we were half an hour late. We prepared the horses and then went for a hack – it was wet and it was fun. After the lesson I drove my daughter to another friends house and then I drove home.

My son had given my mum lunch, I made her a cup of tea. After her tea I changed my mums pad and then I walked her through to the living room and sat her in her chair.

I cleaned the house and then I prepared dinner. We ate dinner and then I washed the dishes. The carers arrived and washed and changed my mum into her pjs. I asked the carers to put bring my mum through to the living room.

I went for a hot bath and then I watched a movie. I asked my son to help me walk my mum through to her bedroom and he helped me to put my mum to bed. I watched another movie and then I went to bed.

I woke up through the night my arm was sore and I could not get comfortable. Eventually I feel back to sleep.

6th Dec

I woke up a 9am. The carers arrived at 9.30am. They woke my mum and began getting her ready for the day. The carers left. I gave my mum her breakfast and then I brushed her teeth. I wheeled her into the living room and switched on the tv. My mum fell asleep. I got myself ready for the day.

I began cleaning the house, putting our washing through the washing machine and ironing all our clothes. I put a chicken in the oven. I checked on my mum, she was awake. I wheeled my mum through to the kitchen and chatted with her whilst I continued with my ironing.

I made lunch for everyone, we ate lunch. I washed the dishes. I put my mums poncho and hat on and wrapped a blanket round her legs, I wheeled her out the front door so that she could get some fresh air. I continued ironing. I took my ironing upstairs, I happened to look out of the window and it was pouring, raining really heavy. I ran downstairs and I wheeled my mum into the house. She was a wet, however, she looked fine, rosy cheeked and wide a wake.

I made us a cup of tea.

My friend arrived with my daughter. My friend stayed and had a cup of coffee and then she left. I finished making diner, we ate dinner and then I washed the dishes. My daughter wanted rice pudding, I began cooking rice pudding. Today I am feeling a lot of pain in my arms and my shoulder, I ache all over.

My daughter and I began putting up the Christmas decorations, I was not feeling very motivated, but smiled and acted interested and excited. I will need to do something to get rid of this pain. I want to curl up into a ball and sleep.

The carers arrived and they washed my mum and put her into her pjs. Then they wheeled her through to the living room and left her watching tv.

I gave my daughter and my mum some rice pudding and then I washed the dishes. We sat in the living room for a while and watched a Christmas movie, getting in the mood…… I hope this happens soon…..

I asked my daughter to help me walk my mum through to her bedroom, we changed her pad and we put her to bed. I had a bath.

My laptop had been running slow so before I went to bed I reset it, thinking that tomorrow it will be working fine. I wish I had not upgraded it to Windows 10 aaargh! I hate ‘IT’…..

I went to bed.

7th Dec

I woke up at 6.45am. My lower back was sore, strangely my arms felt okay. I woke my children. I did not check on my mum this morning, I got caught up trying to get my children organised for school. My children left at 8am. I turned my laptop on. I should not have bothered aaaargh! some of my apps were not working, I attempted to fix it and before I knew it the carers arrived, it was now 9am.

How stupid I should have checked on my mum.

Luckily my mum was still asleep when the carers went through. My arm and shoulder began to throb.

I received a telephone call from the physiotherapist team, the lady asked me lots of health questions and I answered, I felt like a hypochondriac, I complained about this and I complained about that. I asked her about cancer and why this was relevant to pains in your shoulder/arm. She said not to worry about it as they were just trying to get a full health profile. I came off the phone feeling as though I should just hospitalize myself and get it over and done with. I was also feeling very worried.

The carers washed my mum and dressed my mum, they gave her breakfast and a cup of tea. The carers left, I brushed my mums teeth and brushed her hair.

I kept my mum off her day care today as my shoulder, arm and lower back was too sore to help my mum into my car. I telephoned the day care service and asked if my mum could use their mini bus to go to the day care on a Monday and Tuesday, starting from tomorrow. I explained that I would take my mum in to day care on the Thursday and the Friday. This way my shoulder would get a longer break from pushing and twisting my mums feet into the foot well of my car. I asked if this would cost around£25.00 a week, which would be more affordable that £50.00 a week. They said they would call me back.

I sat and wondered about when it will come to a point in my life that I need to make a decision regarding what my family will need to do with out, will it be heating, will it be food, will it be my mums right to participate in her community. I wondered were the nearest food bank was as that may be something we will require to use soon. What a life. I have worked hard to ensure that my children have never done without and here it comes, the snowball affect, when everything may spiral out of control and we will have to do without – I am loosing the will to live this life (for those who do not know me, this is just an expression of how low I am feeling, I will never loose the will to live, I have to much to live for, I always pick myself back up!!! sometimes it is harder than other times, but it always happens).

I went online and began a live chat with the Microsoft support team. After around an hour my laptop problems were solved. Than god for that.

I received a call from an OT asking if herself and all the care workers could meet at my house on Monday 21st of December, so that they could conduct training on the full body hoist and the stand aid, which are used to support my mum. I said to her that I would need to check the date as I had a few appointments coming up for myself. After I put the phone down I started to think about our conversation and I thought surely they are not expecting to use the equipment on my mum, when all the carers are standing watching???? and why on earth does everyone need to meet at my house, is my house not busy enough. It is beginning to feel like my home is not a home. I want to move out and find a home that can be my home, with no intrusion, no harassment and no continous problems from services, procedures and policies – EVERYONE LEAVE ME ALONE…………. Jings! why can’t I just care for my mum with unproblematic support and limited invasion. My life is not my own.

I phoned the OT back. I said that I thought that it would be distressing for my mum, if all the carers were their when training was occurring with the equipment and that it would be extremely distressing for her. The OT said that my mum did not have to be involved in the training and that all the staff should know how to use the equipment and that the gathering of people at my house was to discuss the risk assessment and ensure that all the staff were aware that I had the judgment call as to what equipment should be used and when it should be used.

TOTALLY ABSURD, who on earth decided that ‘best practice’ is for all the care staff, who come to my house to deal with my mums personal hygiene, to congregate in my house to discuss what they all already know.

From what I was saying and my tone of voice the OT said ‘you are happy with this’. I explained that I did not understand the need for it and said that I would contact my mums keyworker. The OT said it was one of the recommendations from the adult protection investigation which was carried out, regarding the care worker who caused my mum to scream whilst getting her ready for bed. I explained that it was a waste of time as all the other care workers new how to deal with my mum and used the equipment and did not have any issues. I GIVE UP AAAAAAAAARGH!!!!!!!

I tried to call my mums keyworker and I was told that she was off work today.

I received an email from the care inspectorate saying that they had brought up my complaint in a meeting that they had with my local authority and they asked if they could give my details to a senior manager within my local authority as they wished to contact me regarding my issues. I emailed them saying that this was fine.

I made lunch for my mum and I. What another wasted day.

I received an email from my mums keyworker saying that the OT would be in contact with me regarding training staff and that my mum did not have to be there when the training took place.

I began making dinner. The carers arrived, when they were here they said that they received an email this morning saying that they were to attend a training session at my house. AAAARGH! It is, as though, there has been a meeting about my mum and I and at the meeting it has been decided that a training session will occur in my house and everyone at the meeting has then left and went back to their own teams and began organising the training, even though no-one has consulted me about it. I AM RAGING, I FEEL EXTREMELY ANGRY. I typed an email to my mum’s keyworker and I sent it. After I sent the email I felt bad, I used the word ‘you’ making the content of the email look as though it was personally aimed at my mum’s keyworker, when this is not the case, it was aimed at the service as a whole. REMINDER TO SELF – NEVER EVER EVER SEND AN EMAIL WHEN I AM FEELING ANGRY, always wait until I feel calm. My mum’s keyworker tries her best, within the boundaries.

The carers changed my mum into her pjs and wheeled her through to the kitchen. The carers left. We ate dinner. I washed the dishes. My daughter helped me walk my mum and then we sat her in the living room.

Later my son helped me walk my mum through to her bedroom, my daughter then came through and helped me to change my mums pad and then we put my mum to bed.

I went to bed. It took me ages to fall asleep. I woke up three times throughout the night.

8th Dec

I woke up at 6.45am. I woke my children. I am feeling sore. I take a codeine  and two paracetamol. I cannot bare another day being sore. I checked on my mum and she was awake. I put her light on and I raised her bed and I turned on her tv. My children left at 8am. I cleaned my children’s bedrooms.

The carers arrived at 9am. They washed my mum and then they dressed my mum. I received an email from my mums keyworker. I telephoned her and I apologized for my email, saying that, I should not have used the word ‘you’, as my email was aimed at the service as a whole. I discussed the training and how, I was, and I am feeling about everything. I explained that the pressures and stresses that come with accessing services and fighting for my mums rights, alongside, my sore arm, back and shoulder are wearing me down and making it difficult to cope.  It was agreed that the training will take place elsewhere.

The carers feed my mum her breakfast and gave her a cup of tea. We took my mum up to my car and the carer helped me put my mum into my car. I drove my mum to the day care centre. I asked the lady from the day care centre how things were coming along with the mini bus. She said that the drivers are going to do a test run to my house on Thursday. I asked her if the driver was willing to start early on the Tuesday, so that he could bring my mum to the day care on the Tuesday as well as the Monday. She said that she had asked him and he said to her not to be ridiculous. I am stunned. The lady also said that they are having a Christmas party next Tuesday and that all the residents are being driven to the the day care centre free of charge, she asked the driver if my mum could be picked up, the driver checked the system and then he said, no! there is problems with that one, to do with the transport! I AM EVEN MORE STUNNED. OR SHOULD I AS EXCLUDED…… SHOCKING BEHAVIOUR SHOCKING WORDS – WHY ARE PEOPLE SO CRUEL.

I drove home, I am feeling very disheartened and very disappointed in people.

I arrive home and I clean the house. The Codeine is making me feel sleepy, but my pain has eased off – fantastic. Gosh! I hate taking pills. I hope I do not need them for long.

I drive to my local shop and get some food shopping. I drive to the day care centre and I pick my mum up. I drive home. The carer helps me take my mum into the house. I make dinner and then we eat dinner. The carers arrive and they change my mum into her pjs. They sit her in her chair in the living room. I sit a watch tv for a while and then I ask my daughter to help walk my mum through to her room. We change her pad and then we put her to bed. I watch tv for a little while longer. I take another codeine and another two paracetamol. Bedtime. I sleep like a log.