Day 68 – Day 74

18th November – 24th November

18th November

I woke up at 6.15am. I woke my children. My nose began to bleed. I wiped my nose and I sat in the toilet for five minutes. I could not remember what to do when a person has a nose bleed, head up or head down, hmmmmm! I just sat with loo roll on my nose. Once my nose had stopped bleeding I prepared my mums clothes and then I checked on my children. They were both awake and they were getting ready for the day. I then got myself ready for the day. I asked my son to help me get my mum up and out of bed. We sat her in her wheelchair. I took off her pyjama top and put on her vest and a jumper. I took off her pyjama bottoms and slipped on her socks, trousers and shoes. I asked my daughter to help me change my mums pad and then we finished getting her ready for the day.

My children ate their breakfast whilst I feed my mum her breakfast. Its 8am and time to leave.  We wheeled my mum up to my car and then we put my mum into the car. I dropped my daughter at the bus stop and then I drove my son to his work placement. I am glad that this is my sons last day at his work placement.

I drove home, I picked my friend up from her house and she helped me to get my mum out of the car. I wheeled my mum into my house and then I drove my friend home. I went back to my house. My nose began to bleed again!!!!! I am feeling tired and drained. I went for a sleep. I could not sleep.

I made lunch for my mum and I.

I picked up my friend and drove her up to my house so that she could help me get my mum into my car. I drove my friend home. I then drove to pick up my daughter from school. We all drove to pick up my son from his placement.

We arrived home. I felt exhausted. My son helped me to get my mum out of my car. What a struggle, both my shoulders were sore, I felt sick and I felt exhausted. If only I could sleep for a week, maybe then, I would wake up and feel refreshed and revitalized. I need to go to the doctors.

I began making dinner. Tonight we ate fast food as I had no energy to cook ‘good’ food. I washed the dishes and made a smoothie for both my mum and I. I was thinking that this would make up for the chemical laden dinner had just eaten.

Both carers arrived. The carer who tends to struggle with my mum arrived with another carer, who was new. I said to the carer who struggles with my mum that she should go out to my shed to get the stand aid to use when changing my mum into her pjs, I explained that I would like my mum to sit in the living room as she was wide awake.

The carer who struggles with my mum said to the other carer that she would need to help her to get the stand aid out of my shed, as it took two people to do this. I told her that one person could manage to get the stand aid out of the shed and that it did not need two people. She said that it would be easier with two people, I said that this was correct, however, it did not need two people to do the job. I was thinking here we go again, anything to be awkward, why can she not be nice like all the other carers. Both of the carers left my house to go and get the stand aid from the shed.

Both of the carers came back into the house, with no stand aid. The new carer explained that the other carer had said to her that the equipment was not working. I was confused. I asked her what she meant by this as both the stand aid and the full body hoist were working perfectly. She explained that there was a red light on and that this meant there was no charge in the equipment. I went to the shed and checked the stand aid, it worked perfectly, I took the stand aid into my house. I explained again that I would like my mum to sit in the living room.

Ages later the new carer came into the living room and she said that she was slightly concerned that the sling from the stand aid was not on my mum properly and she asked me if I could check it. I went through to my mums room and I checked the sling, it was nearly on correctly, but not quite. I undone the sling and redone it. The leg strap was not on, I put this on. I explained to both of the carers that when they were using the stand aid that they were only to lift my mum slightly, as if the stand aid went too high, it would be extremely painful for my mum. I left the room.

My sister called me. Whilst on the phone to my sister I heard a screaming noise. It sounded like my mum, I heard it again and again. I wondered if this was my son getting over excited on his PS4. Then I heard another scream and it was distinctly my mum screaming. I ran through to my mums room and said “was my mum screaming there”. The new carer said yes but it is all right now. I left the room.

I heard the new carer in the kitchen and I heard her shouting through to my mums bedroom, asking the other carer what she should do with my mums incontinence pad. I heard the other carer shouting, “put it in the silver bin”. The incontinence pads go in the bin that sits outside my front door. I felt furious, I wondered if the other carer was doing this deliberately as she had been up to my house on numerous occasions and knows the procedure. I walked through and asked the other carer why she was telling the new carer to put the pad in the bin in the house, she said it was only for now!!!! What on earth does that mean?

The other carer reached for the folder they use, to log what they have done whilst at my house. I asked where my mum was. The new carer said that she was in her bed. I asked “why” as I had said twice that I wanted my mum sitting in the living room. The new carer said that she thought I had said that I wanted my mum sitting in the living room, but the other carer was insistent that I had said that my mum should go to bed.

Both carers went to my mums room and using the stand aid they got my mum up and brought her through to the living room. Using the stand aid again they began the process of putting my mum onto her chair in the living room. The carer that has been to my house on numerous occasions went to use the control which lifts the stand aid, I said to her to remember not lift the stand aid to high. She pushed the button and the stand aid went up and up and up and up, I shouted not to high, at the same time, my mum began to scream and then the carer pressed the button up again. I felt like a maniac and I was extremely angry. They left.

The whole process of getting my mum ready for bed took around an hour and half, what a horrible experience for my mum. I decided at this point that I did not want this carer back into my house. I do not trust her and I cannot rely on her to look after my mum and make my mum feel safe and secure.

I felt drained.

My mum looked drained and ready for bed. What a waste of an evening.

I made my mum a cup of tea. Then I asked my daughter to help me walk my mum through to her room. We changed her pad and put her to bed.

We all went to bed. Once again I could not sleep, I felt sick, I tossed and turned for half the night.

19th November

I woke up at 8am. My children were off school today, the school had an in-service day. I phoned the home care office and said that I did not want the carer from last night to come to my house again. I explained what had happened over the last three days.

I phoned the doctors and booked an appointment for myself, I am still not feeling very well.

My mums keyworker called and asked me to explain what happened with the carers, I explained what happen. She asked me to put these incidents in writing as she felt that an adult protection investigation may have to take place. Phew! why can things not be simple. All I want to do is care for my mum, everything is always turbulent. Why can things not run smoothly and be simple.

The carers arrived and they washed my mum and changed her into her clothes. One of the carers gave my mum her breakfast whilst I got changed for the day. After we put my mum into my car I drove my mum to the day care centre. I then drove home.

I began the washing and ironing. My children woke up. I gave them their breakfast.

I went to the doctors and the doctor checked all my obs, my blood pressure was high, everything else was normal. The doctor issued me with a prescription for my nose bleeds and arranged an appointment for me to have my bloods taken.

After the doctors I drove to the day care centre, my daughter was with me, she helped me to put my mum into my car. I received another call from my mums keyworker who informed me that after reading through my email it was decided that they were going to carry out an adult protection investigation. She informed me that the carer in question will not be back to my house whilst the investigation is under way. I said that I did not want her in my house with or without an investigation.

I drove home. The carer was waiting to help me get my mum out of my car.

I received an email from my mums keyworker confirming our earlier conversation.

I began making dinner, we ate dinner and then my children washed the dishes.

The carer whom I asked not to come to my house arrived at my door with another carer, I asked her to leave my house, she asked why, I asked her to leave, she asked why. In the end I had to ask her a total of six times to leave my house and eventually she left.

I helped the other carer to get my mum ready and I explained to the other carer why I asked her colleague to leave.

My son, my daughter, my mum and myself sat in the living room and watched tv. Later my daughter helped me to walk my mum through to her bedroom and we changed her pad and we put her to bed.

We all went to bed.

20th November

I woke up at 8am. My children were off school today, another in-service day. The carers arrived at 9am. They washed my mum and changed her into her clothes. Whilst a carer gave my mum her breakfast I got changed for the day. My mum stayed off the day care centre today as I did not have time to drop her off and I would not be able to pick her up for 3.30pm. I had an appointment at the hospital today, to get an ultra sound on my shoulder.

I woke my children, they ate their breakfast and then they washed and changed for the day. My son was going to our nearest town today as he was planning on ‘hanging out’ with his friends. My daughter and her friend were going to a dance class, which was being held in out nearest city, near the hospital.

My son wheeled my mum up to the car and then he helped me put my mum into the car. We then drove to pick up my daughters friend. I quickly went into the doctors and the nurse took some blood, unfortunately the doctor had not noted what bloods he needed to be taken. The nurse decided to take all the basic bloods. Whilst I was getting my bloods taken my children waited in the car with my mum. After my bloods were taken I dropped my son off in the centre of the town. I then drove to our nearest city and dropped my daughter at the dance class. I had to leave my mum in the car in order to take my daughter and her friend into the dance class.I rushed and I quickly went back to the car.

I drove to the hospital. I parked in a disabled parking spot and I quickly ran into the hospital. I explained to the receptionist that I did not have a blue badge and I asked if they had a note I could put on my car so that I did not get a parking ticket. The lady said that I would need to speak with someone from parking department and she dialled their number. I explained the situation to the lady on the phone. She was not pleased, she hmmmm’d and hawed, she said to me can you not wheel your mum into the hospital reception and then drive to another parking space and then go back and collect your mum. I said no and I explained that my mum has Alzheimer’s and may become distressed. Eventually she said that on this occasion she would wipe any parking fine that I got and then she went on to tell me that they will be inundated with calls from people complaining that a car was parked in the a disabled parking space without a blue badge. I apologized. In my head I was thinking you arrogant, horrible, unsympathetic person.

After my call I asked the lady at the reception desk if there was someone who could help me get my mum out of my car. She looked at me as though I were mad. I kept staring at her waiting for her to respond. Again a huff and puff and that same horrible attitude, she said I will need to get a porter, he can bring a chair, but he cannot help you get your mum out of the car, he’s not allowed. I said that’s fine, I will do it myself.

I walked back to my car.

I took my mums wheelchair out of my car and I set it up, I placed it next to her door. I was thinking that this was going to be a disaster, one of us will end up getting hurt. I began trying to get my mum out of the car. I undone her seat belt, I pulled and twisted her feet round and past the foot well and the passenger door. I took hold of her arm and began trying to pull her up into a sitting position. At this point the porter arrived with a chair, I explained to him that I did not need a chair and I asked if he could stand near me in case my mum fell. He said that he was sorry and that he would not be able to help me however he would be able to stand near me in case my mum fell. He watched me struggling, for only a second, and then he helped me.

Society worries me, it worries me that, that when it comes to governmental and organisational policies that risk has over taken humanity. It makes me feel humbled when people override and step slightly over the line to help when they see a person in need.

Once my mum was safely in her wheelchair we went into the hospital. We sat in the cafeteria and we ate some lunch. I fed my mum as I fed myself. People kept staring, I wonder why people do this, they stare and when you look at them, they look away. It would be so much nicer if they smiled and said hello. One older lady came over and began talking to me. I knew her from my previous stay in hospital, she gave my mum a cuddle and my mum giggled and smiled.

Once my appointment was over I wheeled my mum out to my car. Luckily there was a man just about to get into his car, I asked him if he could help me get my mum into my car. He did. I found this extremely embarrassing, he also looked embarrassed. Whilst we were trying to get my mum into my car, other people arrived to get into their car and they could not because we were in their way. They stood and stared and smiled. I was even more embarrassed and I felt under a lot of pressure to quickly get my mum into my car. Once my mum was in the car I apologized to the people I had kept waiting and I thanked the man who had helped me put my mum into my car. I felt totally and utterly flustered.

Isn’t it strange, before I became a carer for my mum I was independent, healthy, free, able to progress my education, able to work, I felt proud and I felt that people could enjoy having a conversation with me and now that I am a carer I feel that I am am treated as needy, a complainer, a person that is never happy, humiliated, unhealthy, financially struggling, depressive and cared for. How sad is that and what a comparison.

I drove to the dance centre and I picked up my daughter and her friend. We drove to our nearest town and picked my son up and then we dropped my daughters friend off at her house and then we drove home. My son helped me get my mum out of my car and then we wheeled her down to my house. The carer arrived and she helped me change my mums pad. We then sat my mum in her chair in the living room.

I cooked diner and then we ate dinner. I washed the dishes. The carers arrived and began the process of washing my mum and putting her pjs on. Mum went straight to bed, she was exhausted.

I sat a watched tv for a while and then I went to bed.

21st November

I woke up at 8am. I made a cup of coffee. I checked on my mum and she was sound asleep. Her legs were hanging out of the bed. I touched them and they were freezing. I lifted my mums legs up and I put them back on the bed and under the duvet. My mum remained asleep.

I sat in the living room and drank my coffee. The carers arrived at 9am. They washed my mum and they dressed my mum. The carers left. I gave my mum her breakfast and then I brushed her teeth.

I asked my son to help me walk my mum through to the living room and we sat her on her chair. I put the tv on for my mum and then I began getting changed.

I cleaned my house and then I began an ironing. I asked my son to help me stand my mum up and I took her for a walk around my house. I walked her back through to the living room, my son helped me to sit her down. I made her a cup of tea.

I began preparing dinner. After dinner the carers arrived they washed my mum and then they changed her into her pjs. They walked my mum through to the living room and then they sat my mum in her chair. I spent the rest of the evening helping my son to study for his Biology prelim. I asked him questions and he answered them. He done well.

I watched a movie and then I asked my son to help me walk my mum through to her bedroom. I went to the shed and I brought the stand aid into my house. I used the stand aid to support my mum whilst I changed her pad. I then asked my son to come through and to help me to put my mum to bed.

We all went to bed.

22nd November

I woke up at 8.30am. The carers arrived at 9am. I was still sleepy. The carers put my mum onto the commode and left her there for 20 minutes. Afterwards, they washed my mum and they put her clothes on for the day. The carers left. I gave my mum her breakfast.

My children woke up and had their breakfast.

My daughter had a riding lesson, I drove my daughter to her lesson. It was freezing today, my feet were cold and I felt unwell. After her lesson we drove home. I made lunch for us all. We ate lunch.

My daughter sat around in the living room and watched tv. I cleaned my cupboards and prepared our dinner.

We all ate dinner and then I washed the dishes. The carers arrived and they changed my mum into her pjs. They then sat her in the living room. I helped my son to study for his Biology prelim. Afterwards my daughter heled me to walk my mum through to her room, we changed her pad and we put her to bed.

We all went to bed. I was feeling sick again and both my arms were sore. I got up out of my bed and went downstairs. I took two paracetamol and I went back to bed.

I feel asleep.

23rd November

I woke up at 6.45am. I woke my children. It was my sons birthday today, sweet 15 aaaaargh! I can not believe how quickly the time has passed, he is nearly an adult now and he will soon be wanting to leave home to spread his wings and find new adventures. What a thought. I said happy birthday to my son and much to his horror, gave him a big kiss. I checked on my mum and she was fast asleep. When my son came through to the living room he opened all his presents, he looked happy. I worried that I had not bought him enough. I hoped he was happy with what I had got for him. My children left at 8am. I cleaned my children’s bedrooms.

The carer arrived at 9am. We waited for a little while to see if a second carer would arrive. No other carer arrived. The carer called her office and she was told that no second carer would be coming. The carer and I got my mum up, we sat her on the commode for 15 minutes. We showered my mum and we put her clothes on. Whilst the carer gave my mum her breakfast I got ready for the day.

We wheeled my mum up to my car and then we put her into my car. I drove my mum to the day care centre. I drove home. I began to clean my shed, what a mess it was in.

I drove to the day care centre and I picked up my mum, I drove her home. The carer helped me get my mum out of my car and then we wheeled her down to my house. I made a cup of tea.

I prepared dinner and then we ate dinner. The carer arrived and I helped her wash my mum and put her pjs on. We walked my mum through to the living room and sat her in her chair.

24th November

I woke up at 6.45am. I woke my children. I checked on my mum and she was fast asleep. My children left at 8am. I checked on my mum and she was still fast asleep. I tidied my children’s bedrooms. Two carers arrived at 9.15am. They got my mum up and sat her on the commode for 15 minutes, they then washed her and dressed her. Whilst they were doing this I got ready for the day. One of the carers gave my mum her breakfast and the other sat at the kitchen table. We all chatted whilst my mum ate her breakfast. We wheeled my mum up to my car and then we put my mum into my car.

I drove my mum to the day care centre. I drove home. I cleaned the car and then I fixed my garden gate, it had been broken for a while and was in desperate need of repair.

I cleaned the house and mopped the floors

I drove to the day care centre and picked my mum up, I drove her home. The carer was waiting for us, we got my mum out of my car and wheeled her down to the house. We sat my mum on the commode for 15 minutes and then we changed her pad. We walked my mum through to the living room and sat her in her chair. The carer left.

I made dinner for myself,my mum and my son. I washed the dishes. A carer arrived, we put my mum onto the commode. A second carer arrived with her manager. Both carers washed my mum and then they put her to bed. Myself and the carers manager sat and chatted. I then took him through to meet my mum. They all left. My floors where all muddy and dirty again, aaargh! I give up.

I drove to my daughters vaulting class and I picked her up, I also picked up her two friends and dropped them at their house. I drove my daughter home. I made her dinner and then I had a bath.

I received an email from the financial assessment team of my local authority it said the following:

The Discretion Panel considered my mums application and agreed to a partial discretion. How kind.

The Panel agreed that my mum was and is required to pay £56.50 per week towards her transport costs.

They agreed to backdate the financial assessment to 25 October 2014 when my mum began using the transport service rather than my mum being treated as self-funded. So instead of my mums arrears being for £134.00 a week since Oct 2014 it will only be recalculated at £56.90 a week since Oct 2014.

So regardless of not being informed of the transport charges and regardless of not being able to afford the transport costs and regardless of the undignified journey my mum has to endure eight times a week, she still have to pay. Astronomical.

My daughter and I watched tv for a while and then we all went to bed. I feel better today. I fell asleep quickly.