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.

 

 

Day 60 – Day 67

11th November – 17th November

11th November

I woke up at 6.45am. It was my mums day off from the day care centre and I was looking forward to being able to spend some quality time with her. I woke my children. I checked on my mum and she was fast asleep.

My son had his biology exam today, I asked him how he felt. He shrugged his shoulders and mumbled, “alright”, gosh! I remember those days. The worry and the anxious feelings I had when I went into school to sit exams. Poor wee thing. My children left at 8am.

I checked on my mum, her eyes where open. She looked very peaceful this morning. I raised her bed and I gave her a glass of water. I never turned on her tv today. I was thinking that maybe it would be nice for her not to hear the background noise of the tv, I wondered if the noise of the tv annoyed her – I am not sure, it is hard to tell. My mum embraces her Alzheimer’s quietly and never complains.

I cleaned my children’s bedrooms. Their bedrooms are not too bad today and there is not so much stuff scattered all over their floors. Hmmmmmm! what’s going on?

I made a cup of tea for my mum, I gave my mum her tea and I had a little chat with her. Her eyes were vacant and she was staring into space. I rubbed her hands and I stroked her cheeks, she looked at me and she smiled. I smiled back and said good morning. What a lovely lady she is.

The carers arrived, its 9am. The carers got my mum up out of her bed and they put her onto the commode. They then showered her and dressed her for the day. The carers only left my mum on the commode for a few minutes, this annoyed me, as I know she needs longer and I know when I was helping with my mums care she always had a full ten minutes on the commode. The carers walked my mum through to the kitchen. My mum kept stopping and they kept coaxing her, I asked the carer, the one who was behind my mum, to gently tickle my mums waist. She done this and my mum began tottering forward. They sat her in her wheelchair and then the carers left.

I gave my mum her breakfast and then I wheeled her through to the living room. She fell asleep.

I began to clean my house.

I decided to check my shopping receipts, I had seven days’ worth. I decided that since the next discretionary panel was on the 16th of November that I would scan these receipts into my computer and I would email them to the financial assessment officer at my local authority, as part of the evidence required by the discretionary panel to assess whether or not my mum has to pay the arrears they say she has and the £56.90 they say she needs to pay for her transport, which she does not use any longer.

I scanned and I emailed the receipts to the financial assessment officer. I explained that it had been extremely difficult to accumulate my shopping receipts because I kept forgetting that I needed to keep them. I said that if they times my receipts, for the seven days, by four, that they would get an estimate of my monthly shopping bill. My receipts came to £326.82 for the week, times by 4 that will make it £1307.28.

I sat and I wondered if they would be scrutinize my receipt’s and looking at what I buy for my shopping, what a thought!!! It actually makes me feel physically sick that a person has to go through this level of intrusion. I am thinking, will they say we eat too much and question what we eat? What a feeling of invasion that would be. I do not even feel angry any more, just disgusted at the level of degrading and humiliating treatment that my family and myself are enduring. It’s demoralizing and debilitating.

It seriously feels as though, as a carer, I am deemed as a person that does not work and sits about syphoning money from my mum. When in actual fact I work hard keeping my mum healthy and out of the health system, I work hard at keeping my mum out of nursing homes, I work hard to ensure that she is respected and that what life she has left is a quality life and I work hard bringing my children up to be respectable young adults. I also study part-time via distance learning to ensure that when the time is right that I can obtain a well-paid job and contribute to society as others do. But hey! Who am I to question the authorities that be! Who am I to complain about people scrutinizing my shopping bills – WHO AM I? Just another person to be pushed and pulled about.

I made lunch for my mum and I. We sat in the living room and ate our lunch, I chatted to my mum and rubbed her hands. She made lots of eye contact with me and she chatted in a gibberish way, it was lovely to hear.

I washed the dishes. I then made sure my mum was comfortable and then I took my dog for a walk, my neighbour came with me, it was nice having some company and someone to talk too, who made sense. I tried not to talk about my situation as I feel that I must bore people when I go on and on, complaining about this and complaining about that. I remember back to when my chat was full of joy and fun and I wonder where that person is gone, because I certainly do not feel like that person anymore.

When I arrived home, I changed my mums pad. I brought the standaid in and fitted the sling around her back, I positioned her feet and attached the sling to the standaid. I raised her up and I changed her pad. I have tried the standaid on myself and I know it is extremely uncomfortable, however, my mum is silent throughout the whole process – I wondered why. My shoulder and my arm are sore.

My children arrived home from school. My son had passed his Biology test and he had a big smile on his face, so did I, I was so happy for him.

I began preparing dinner. We ate our dinner and then my children washed the dishes. I continued to feed my mum.

The carers arrived and they washed my mum and they put her pjs on. They sat my mum in the living room.

I helped my daughter with her homework. After we had finished I asked my daughter to help me walk my mum through to her bedroom. We changed her pad and then we put her to bed.

I watched tv for a short time and then we all went to bed.

12th November

I woke up at 6.45am. I woke my children. I checked on my mum and she was still asleep. My children left at 8am. I cleaned their bedrooms. The carers arrived at 9am, they washed and dressed my mum. I fed my mum her breakfast. The carer gave my mum her tea whilst I got ready for the day. The carer helped me put my mum into my car. I drove my mum to the day care centre. I asked for someone to help me get my mum out of the car and then we took her into the day care centre.

I drove home.

I put on a washing and then I thought about what I could do. I am feeling a bit fed-up doing the same thing day in and day out – I could do with a change, but I do not know what else to do. I sprayed the weeds in my garden with vinegar. Then I cleaned my house and prepared dinner. I drove to the day care centre and I picked my mum up and drove her home. The carer was not there when I arrived home. I walked down to my house and I began making a cup of tea for both my mum and I. The carer arrived whilst I was making the tea. We got my mum out of my car and then we wheeled her down to my house. My children arrived home. I gave my mum a cup of tea. I asked my daughter to help me to put my mum on the commode. Later, my daughter helped me change my mums pad and walk her through to the living room.

We ate our dinner and then I done the dishes.  The carers arrived and changed my mum into her pjs. They sat my mum on her chair in the living room.

I put a fire on in the living room, as the nights are getting colder. My mum was extremely sleepy tonight.

I received an email from my tutor which informed me that no local authority has availability for me to complete my placement. This is not unexpected. I imagine that in the local authority database I must look like a ‘head case’ when in actual fact I am just a daughter fighting for my mum’s rights. My tutor said that they would need to look at alternative options such as the voluntary sector. I keep my fingers crossed.

I decided to keep the tv off tonight and I read my book. I had music playing in the background to keep my mum entertained, she loves all Scottish music and luckily BBC Alba had some of this on.

I asked my daughter to help me walk my mum through to her bedroom, we change her pad and we put her to bed.

Bed time for us all.

13th November

I woke up at 6.45am. I woke my children. I checked on my mum and she was still asleep. My children left at 8am. I cleaned their rooms. I checked on my mum and she was still asleep. The carers arrived at 9am, they washed and dressed my mum. I decided to keep my mum off from the day care centre today, I was not feeling great and I was also concerned that it might snow and I would not be able to pick my mum up from the day care centre. I fed my mum her breakfast. I then I got ready for the day.

I cleaned the house and then I made lunch for mum and I. We ate our lunch and then I washed the dishes. I brought the standaid into my house and used this to help aid me whilst I changed my mums pad.

I took my dog for a walk.

The carer arrived at 4pm. We changed my mums pad and then she left.

My children arrived home from school, they had brought their friends with them. I had planned on taking my children for a Chinese buffet and then to the cinema. I asked them what they wanted to do. They hmmmm’d and hawed and looked quite awkward. I asked if they just wanted to go for the Chinese buffet and then they could take their friends, I explained that if they wanted their friends to come they would not be able to go to the cinema, as I could not afford to pay for it all. They agreed. Their friends phoned their parents and asked if they could go, they could, they were all happy.

The carer arrived to look after my mum. Myself and all the children left for the Chinese buffet. We had a fab night and ate lots and lots of food. We talked and we chatted and I listened intently to lots of teenage chat…… I laughed silently at all their chatter. Hmmmmmm! I am thinking,  I am glad that I am older.

We all arrived home at around 8.30pm. The carer was in the living room reading a book. My mum was in bed, wide awake and with no tv on. Hmmmm! I wonder if she was put to bed at 6.15pm, when the evening carers arrived. I am feeling annoyed. If my mum is extremely tired i put her to bed early, but not when she is full of beans and wide awake, as she was today. For future reference I will need to make it clear that this is what I do, as I do not want my mum lying in bed from 6.15pm when she could be up and interacting with those around her. Common sense prevails!!!!

My sister arrived.

Fantastic, my weekend off. A break. Whoopee! Long lies and some freedom. Out with my children and my pets I have no commitments to keep me at home – what a feeling.

I explained to my sister about our mum being in bed. With the help of her son, my sister got my mum up from bed and brought her through to the living room.

We sat and talked for a while and then I went to bed. My sister dealt with all the children and our mum, therefore, I do not know what they done for the rest of the evening – BLISS!

14th November

The carers arrived, they woke me up, and its 9.15 am.  It would have been fabulous to wake up naturally without interruption, I cannot remember the last time that this happened. I went downstairs and I made myself a coffee and I went back to bed feeling grumpy. I lay in bed and drank my coffee and read my book.

I went downstairs. I had a laugh with the carers and I told them they had voices like fog horns. We had a chat and the carers left.

Today was relaxing, I never done anything to help with my mum today. I took it easy all day today. My sister is a godsend, I know I would mentally struggle without my fortnightly breaks.

I took it easy, I am not sure exactly what I done today, it was one of those days where it passed in a bit of a blur – It must have been extremely quiet and I must have been extremely lazy.

Later I watched a movie with my sister, if was a brilliant movie, I really enjoyed it.

I went to bed and fell asleep quite quickly.

15th November

I woke up at 9.15am, again the carers woke me up. With sleepy eyes and wild wild hair I stomped down the stairs. I made a coffee and went back to bed. I drank my coffee and watched the news. I went back downstairs and then I got ready for the day.

Our children had drank all the milk, I had to quickly go down to the shops as there was no milk for my mums cereal or her tea.

After this I drove to my friend’s house and I dropped off some milk. She is an elderly lady and struggles to get to the shops. I then went shopping for food messages with my daughter. We drove home.

I made lunch for the children, my mum, my sister and myself and then I washed the dishes.

I began preparing dinner and made a banana loaf – it was yummy.

My sister left at around 4pm. Once she had left my children, my mum and I all ate our dinner. My daughter helped me put my mum onto the commode. The carers arrived at 6.15pm and washed my mum and put her pjs on. They then sat her in the living room.

I felt unwell, a bit squeamish. I sat in the living room with my daughter and watched tv for a while.

My friend called to say that she would not be able to look after my mum in the morning. What a nightmare. I would need to wake my mum up early and get her ready with the help of my daughter. My son was due to go on a work placement and I needed to drive him to our nearest city for 9am. This meant I would need to leave my house by 8am. My friend felt awful but there was nothing that could be done. She said that she could definitely help on the Tuesday and Wednesday.

I asked my daughter to help me walk my mum through to her bedroom, we change her pad and we put her to bed.

I went to bed. My stomach was sore and I felt sick. I tossed and turned and I felt light headed. I could not sleep. I went downstairs and I was sick three time. I hoped that it wasn’t the start of a bug. I went back to bed and I fell asleep.

16th November

What a panic today. What a rush. I woke up at 6.15am. I woke my children. I prepared my mums clothes and then I checked on my children. My son was getting ready and my daughter was fast asleep. I woke her again. I then got ready for the day. I asked my son to help me get my mum 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, trouser and shoes. I asked my daughter to help me change my mums pad and 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 decided to put my mum into the back seat so that I could chat to my son about the work placement he was going to. What a nightmare, the space between the door and the backseat was even tighter than the front seat. I had to pull my mum right back so that she was practically lying on the seat, my children then moved her feet and legs round. Then I sat my mum upright and fastened her seat belt – I am puffed out. My mum is quiet.

I dropped my daughter at the bus stop and then I drove my son to his work placement, we chatted all the way there – he said he was not, but I think he was extremely nervous. I parked the car in the car park, I had to leave my mum in the car as we had no time to try and get her out of the car, I walked my son into his work placement. I returned to the car and then I drove my mum to the day care centre. The time is now 10.20am. I asked the lady in the day care centre to help me get my mum out of the car. It was a struggle but we managed. I drove home. I felt as though I had completed a day’s work, I was floored.

I received a call from the complaints department of my local authority, she said that she was going to email me bullet points listing all of my complaints and asked me if I would check them and if I would call her if she had missed anything or if anything was wrong. I said I would. She explained that once I got back to her she would investigate each of my complaints and that my complaints would either be upheld or not. She sounded very nice and was very friendly on the phone.

I put a washing on and I cleaned the house. It was time to leave, it was 2.20pm. I was running late. I rushed up my garden path, my foot gave way and I fell I went skimming along the ground, my trousers were soaking and muddy, my jacket was soaking and muddy, I scrapped my hand and hurt my arm, it was extremely- I cursed and I felt slightly stunned, it’s been a long time since I have taken a tumble.

With no time to change, I went on up to my car and I drove to the day care centre. The lady from the day care centre helped me put my mum into my car. I drove to my daughter’s school and I picked her up, we then went to pick up my son from his work placement.

We picked my son up and he looked delighted, he had a big smile on his face, he thoroughly enjoyed his placement. I was happy for him. I asked him to tell me about his day. “I cannot”, he said, “I signed a form”, “it’s confidential”.  After many attempts to find out about his day I gave up. He told me what he was doing and that he sat in the court, out with that he told me nothing…..  We drove to Macdonalds and bought our dinner, we used the drive through, as we had no time to sit in and have something to eat. I phoned my friend and said that we would manage my mum on Tuesday and Wednesday, as it was not as bad as I initially thought it would be. My friend said it would be no problem to come up on Tuesday and Wednesday. I said it was okay that we would manage and that taking my mum with me would be easier.

We arrived home and seconds later the carers arrived. The washed my mum and put her pjs on. I asked them to put my mum straight to bed. One of the carers came through and asked me to help as the other carer was struggling to deal with my mum. My mum was half way down the bed and very close to the edge. I helped the carer to move my mum and we positioned her properly in her bed. I raised the back of my mums bed and I put on the tv. My poor mum she is exhausted, it’s been a busy day.

I ran a bath and soaked in it for an hour. My knees are all scratched from the fall I had earlier in the day.

I checked on my mum, she was still awake. I asked my daughter to help me get her up, we changed her pad and then we put her back to bed.

Bedtime, sleep time – I cannot wait…..

17th November

I woke up at 6.15am. My nose feels itchy, my nose is bleeding. I woke my children. I began preparing my mums clothes for the day. My children got up without a second shout and began eating their breakfast. I got ready for the day. My daughter helped me get my mum washed and changed, we put her into her wheelchair. My nose is still lightly bleeding.

I gave my mum her breakfast. After this we wheeled my mum up to my car. It is 8am. We sat her in the front of the car. I dropped my daughter at the bus stop and then I drove my son to his work placement. I drove my mum to the day care centre and then I drove home.

I put a washing on and began an ironing. I prepared dinner. My nose began to bleed again – what is happening, I am falling apart. I am thinking that I must be run down, maybe I should visit the doctor. I am feeling slightly worried, especially since I had that cancer scare half way through the year. Hmmmmm! what to do!

I recieved an email from the complaints officer from my local authority. She had listed five complaints from my complaint letter and she had asked me to read through them and inform her if anything was missing. This took me quite a while, in the end I emailed her back with a total of fifteen individual complaints.

Its 2pm it was time to leave. I drove to the day care centre and I picked up my mum. I could smell a horrible smell coming from my mum. I thought that maybe she had, had a bowel movement. There was nothing I could do about it as I needed to drive to my sons work placement for 4pm. My poor poor mum.

I did not need to pick up my daughter as she had a vaulting class after school and I would pick her up from there later.

I drove to my sons work placement and I picked him up. He is still happy. We drove home. My phone rang and I was on a call for some time.

My son, my mum and I ate our dinner. I wrapped my daughter’s dinner in cling film and put it into the fridge.

Its 6pm, I drove to my daughters vaulting class and I picked her up.

A carer arrived, just before I arrived back to my house with my daughter. I remembered then that earlier I thought my mum had had a bowel movement. AAAARGH! I am mad at myself, how could I have forgot, how selfish and how thoughtless.  I asked the carer to help me stand my mum up and we put my mum on the commode. As I thought she had a bowel movement in her pad, what a nightmare and how uncomfortable she must have been. I felt annoyed and frustrated.

The second carer arrived. They left my mum for a little longer on the commode. She had a further bowel movement. One of the carers began complaining about her job and the travel etc… etc… She does this every time she comes to my house. I ‘lost it’ with her and told her to stop constantly complaining and said that if she put herself in my shoes she would be desperate to get back to her job. I felt extremely angry, I just wished that she would ‘shut up’.

They washed my mum and then they put her pjs on. I heard raised voices from the bedroom. I went through, the same carer as yesterday, the one who complains all the time, was struggling to manage my mum. I took over. I was totally and utterly ‘hacked off’.  We put my mum to bed. My mum was exhausted again.

 

I made my mum and myself a cup of tea.

I felt bedraggled and fed-up. I watched tv and went to bed, early, the same time as my children.

Bedtime… I feel asleep.

 

 

 

4th November – 10th November

Day 53 – Day 59

4th November

I woke up at 6.45. I woke my children and then I went through and I checked on my mum, she was already awake. I raised her bed, put on her tv and then I got her a glass of water. My mum was chattering and laughing, she appeared really ‘with it’ today. Although not coherent, she was responding to me. I loved seeing my mum like this.  I am amazed at how lucid my mum can be at times and then at other times (most of the time) she is quiet and withdrawn and unresponsive, I wondered if, at times, my mum’s brain begins some kind of healing process and then falls apart again. I also wondered if this is why she has periods of lucidity.

My children left at 8am. Once they had left I cleaned their rooms. The carer arrived at 9am, we put my mum onto the commode and after around ten minutes we took my mum through to the bathroom, we showered her and then we put her clothes on.

I gave my mum her breakfast today, as today, was her day off from the day care centre. Afterwards, I got myself ready for the day.

I received an email from the Scottish Government, which, once again, outlined that my complaint needed to be dealt with at a local level. The email also specified that, on this occasion, they had decided to contact my local authority and that my local authority had informed the Scottish Government that they had been in contact with me and asked me for further evidence, so that the discretionary panel could make a decision on the contribution my mum should make towards her transport and as of yet I had failed to provide them with the information. They further said that just recently they had emailed me and asked me to provide the information – it all sounded like a nice joined up process, when it was not.

Jeeze! am I missing the point? Is there something I am not doing that I should be doing? If there is I wish someone would tell me. AND WHY DOES MY LOCAL AUTHORITY MAKE IT SOUND LIKE I AM THE ONE DOING SOMETHING WRONG, when in actual fact they are the ones not following their own guidelines and principles. AAAAAAARGH!!! Maybe I am missing the point.

What a joke!

I noticed that there was no mention of the arrears that the local authority say my mum has and that this is what the discretionary hearing was initially all about. There was no mention of how long it took for the man from the financial assessment team to contact me after the initial discretionary hearing took place. They did mention and apologise for the intrusion I felt I had endured due to the level of questioning – how kind, I am thinking. FURIOUS AGAIN.

I decided that I was not even going to respond to the email I received from the Scottish Government – I gave up, surrendered, I could not be bothered.

I contacted the ombudsman to tell them about the conversation I had with my local authority the night before. I explained that my local authority had informed me that I had not raised a complaint when my mum sustained 28 bruises in a care home. I explained that this was nonsense and that I gave the lady I was speaking with the details of the complaint. The person from the ombudsman said that she would contact my local authority and that she would call me back.

I began cleaning the house. During this I had a change of mind and I decided that I was going to email the Scottish Government again.

I emailed the Scottish Government and I outlined some extracts from my local authorities guidelines for the charges and contributions policy, I explained what had happened with both myself and my mum and the grievances we have for each extract I copied and pasted within my email. My email was long. I pointed out my concerns regarding the implementation of the charges and contributions policy, stating that although my mum’s case was an individual case if the actual implementation of the charges and contributions policy was wrong then other people would most likely be negatively affected by it.

I made lunch, it was now 2pm.

I finished cleaning the house. My children arrived home. I asked my daughter to help me get my mum onto the commode. Later, I asked her to help me change my mums pad and we then walked my mum through to the livingroom and sat her on her chair. My shoulder was sore and my arm was sore, I am hoping that it will get better as I need to be able to care for my mum and my children. I worry that it will not get better and I will end up needing to be supported, even more, by my children.

I made dinner. My son helped me stand my mum up and then we sat her in her wheelchair. We all ate dinner. I fed my mum as I fed myself. She is included in all that we do.

I washed the dishes whilst chatting to my mum. The carer arrived and we got my mum changed into her pjs and then we put her to bed. I raised my mums bed and put her tv on.

Later I checked on my mum and she was fast asleep, I put her tv off and lowered her bed.

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

5th November

I woke up at 6.45am. I woke my children. I checked on my mum and she was still asleep. My children left at 8am. I checked on my mum and she was still asleep. I tidied my children’s rooms. The carer arrived at 9am. We went into my mums room and she was still asleep. We gently woke her and put her on the commode. Again my mum was chattering and laughing. I am hoping that this lasts and she continues to be like this.

After we finished washing and changing my mum, the carer gave my mum her breakfast. Whilst the carer done this I got changed for the day. The carer helped me get my mum into my car and I took my mum to the day care centre. I needed to get some shopping. I drove to the local supermarket. Whilst I was parked in the car park I decided to contact the ombudsman again.

I contacted the ombudsman to find out how they were coming along with the questions I had raised with them the day before. They asked me to send in all the information that I had regarding my complaint and said that they would send me a complaints form – good news at last, at least they are considering my complaint.

I also contacted the social work office to ask when I am likely to get a double up of carers as I am feeling a more intense pain in my shoulder and arm. The lady I spoke with said she would look into it and call me later.

When I returned home I noticed that I had received an email from the Scottish Government. Once again I was told that I would need to deal with my complaint at a local level. However, I gained some helpful information regarding the legislation and governing bodies relating to the charges and contributions policy. I had a look through some of the relevant websites.

I cleaned the house and then I prepared dinner.

I went to the day care centre and I collected my mum, she was sleeping when I arrived. The lady from the day care centre helped my get my mum into my car. I drove my mum home. The carer was waiting for me and she helped me get my mum out of my car. We wheeled her into my house.

My children arrived home. The post had arrived. I had received a letter from the care inspectorate, promising, I am glad to say I seen some action.

I received a call from the social work office and the lady that telephoned me said that she had contacted home care services and that they should have a double up of carers from tomorrow and that they would contact me tomorrow and give me the details.

We ate dinner and then I washed the dishes.

The carer arrived and we changed my mum into her pjs. I put my mum to bed, as she had been falling asleep whilst I was giving her dinner. I turned her tv on and raised her bed.

I went upstairs and cleaned my room. I then went downstairs and watched some tv with my daughter, my son was on his ps4.

We all went to bed.

6th November

I woke at 6.45. I woke my children. I checked on my mum and she was still in bed, her head was hanging off the bed. I went over and I lifted her head and placed it comfortably on the pillow, she woke for a second and then closed her eyes. I am thinking that she looks a bit ‘off’ today.

My children left at 8am. I received a call from the home care office at 8.10am  and the lady I was speaking with explained that they now have cover and that from the next day I should have a double up of carers. She further explained that there were three mornings that they could not get cover. I said that this was fine and thanked her. I cleaned my children’s rooms.

The carer arrived at 9am.

We woke my mum up and got her ready for the day. The carer gave my mum breakfast whilst I got changed for the day. I am feeling disappointed, as my mum is not looking so good today.

The carer helped me get my mum into my car and I drove her to the day care centre.

I meet a friend for coffee. We chatted for ages, I enjoyed myself, it was nice speaking with someone who understands Alzheimer’s, it was nice to share that experience.

I decided to write a letter to Audit Scotland regarding my issues surrounding the charging and contributions policy. This took me all afternoon.

It was time to go to the day care centre, I picked my mum up and drove her home. On the way home I received a message, the carer who was going to help me get my mum out of the car had broken down. I picked her up on route and took her home to get her other car.

We got my mum out of my car and wheeled her down to my house.

I cooked dinner. We ate dinner.

Three carers arrived, one was there so that she could see where I lived and would be able find my house the next day and the other two were there to get my mum ready for bed. They changed my mum into her pjs and then they sat my mum in the livingroom.

Later my daughter and myself walked my mum through to her bedroom, we put her to bed.

I felt deflated this evening, I felt flat and unmotivated. I didn’t know why.

I went to bed and I went to sleep – I could not sleep. My arm and shoulder were aching and I needed to keep changing position in order to get comfy, a bit like toothache, that constant ache.

7th November

I woke at 8.45. Two carers arrived this morning, at 9am. I was feeling sleepy. It is great getting help but sometimes you wish that you did not need help so that you could just relax in the morning without the intrusion of people visiting – this can be hard. I felt guilty having these thoughts as without the help I would struggle. Both the carers got my mum ready for the day. I am wishing that I could help.

I received a letter from the Ombudsman looking for me to provide all the information I have regarding the complaint I made to my local authority. This will be a job as I will need to go through all my emails and all my paper work dating back two years. How depressing!

I took my daughter horse riding and oh! boy! did we get soaked. I took Barney (my dog) and he ended up covered in mud and as ‘happy’ as ‘larry’. He loved walking beside the horses, as did I. It was a nice afternoon regardless of the rain. I telephoned my son to find out how he was getting on and to find out how my mum was – all was fine at home.

My daughter, Barney and myself drove home from horse riding. We were all wet, muddy and happy and feeling refreshed.

When we got home my daughter ran a bath for Barney. I checked on my son and then I checked on my mum. I gave my mum a cup of tea. Once Barney was bathed I asked my daughter to help my get my mum onto the commode, we left her there for 20 minutes. My daughter went for a shower. After my daughter had finished in her shower I asked her to help me with my mum, we changed her pad and walked her through to the livingroom, we sat her on her chair.

I had a shower and changed my clothes, I felt extremely tired, it must have been all the fresh air.

I cooked dinner and we all ate dinner. The carers arrived just before we had finished our dinner. They waited for us to finish. The carers took my mum through to her room and got her ready for bed. The carers took my mum into the livingroom and then left. I washed the dishes and then I drove my daughter to her friend’s house.

When I arrived home I made my mum a cup of tea. My mum and me watched tv. Later I asked my son to help me get my mum to bed.

I decided to begin collating the emails I needed for the ombudsman, what a job.

I went to bed.

8th November

I woke up at 8.45. The carers arrived at 9am. The carers got my mum ready for the day. I cleaned up the kitchen, what a mess my son had left the night before aaaaargh! I wish he would clean up after himself.

The carers left.

I gave my mum her breakfast and then I got ready for the day.

My daughter was going riding again today. I drove my daughter to her riding lesson and watched her jump the jumps. Once again we are soaked and muddy. I managed to keep Barney clean (ish). I telephoned my son to see if he was okay and to check that my mum was okay – everything was fine.

When we got home both my daughter and myself had a shower, she let me go first – what a sweetheart.

I made my mum a cup of tea. I asked my son to help me stand my mum up and I walked her through my house. I left my mum standing for a while, I stayed with her in case she took a tumble. I then asked my son to help me sit her in her chair.

I made everyone their dinner and then we all ate dinner.

My son began studying – half an hour later he said he was finished – what a palava, he went on and on and on and on. Three and half hours later I confiscated his ps4. Silence silence silence silence. Hmmmmm!

Three carers arrived this evening, two to get my mum ready for bed and the other one was just checking the route to my house for her visit the next day. The carers put my mum to bed.

I watched tv with my daughter. My son was in his room, he was not very happy with me. Hmmmmm!

We went to bed. I could not sleep. My shoulder and my arm were sore. I was thinking about how to resolve things with my son. He needs to study!!! He loves his PS4!!! He’s a brilliant person and so helpful, I need to work out a way to make things easier, at the same time as, making sure he studies – he is a teenager!!! my work is cut out.

9th November

I woke up at 6.45am. I feel as though I have a hangover, I am so tired, I wish I could back to bed. I woke my children. I checked on my mum and she was still asleep. My children left for school at 8am. I cleaned both their rooms, what a mess, aaaaaaaargh!

The carer arrived at 9am, as per arranged there was only one carer. I helped the carer wash and dress my mum and whilst the carer was feeding my mum her breakfast, I got ready for the day. We took my mum out to my car and put her into my car. I drove my mum to the day care centre.

The care inspectorate called and after reviewing my complaint have informed me that they could not take the complaint on, as it is not, a specific care service that I am complaining about. They suggested that I contact my local authority and register my complaint directly with them. When I arrived home I emailed a complaint to my local authority – now I am not feeling hopeful.

I began cleaning. I washed all the covers from my sofa, they were black from Barney’s weekend rendezvous. I am thinking that I should have trained Barney, when he was a young puppy, not to jump on the sofa. Oh! well! I am definitely too late to change this, now that he is 2. I am thankful that the covers can come off my sofa and that they can get washed, otherwise I would have a very unclean looking sofa.

I received an email from Lynne Rankin from STV News to tell me that the story regarding my blog will be on tonight. I am thinking Aaaaaaaaargh! and oh! no!

I finished cleaning my house and I managed to do all my washing and then I went to the day care centre to pick up my mum and I take her home. When I arrived home the carer was waiting for me, she helped me get my mum out the car and then we wheeled my mum down to my house. I made my mum a cup of tea. She was very sleepy and she could hardly keep her eyes open. Her eyes were closed, but she still managed to drink her tea. Poor mum.

My son arrived home, his face was like thunder, he was not looking happy. I love him so much. My daughter was at a dance class and would be home later. I began making dinner. I went through to my sons room and told him that the news story was going to be on stv at 6pm, he grunted. Oh! Dear!

At 5.55pm my son came out his room and put on the tv, I asked him to shout me through when the story came on. I finished giving my mum her dinner and then I wheeled her through to the livingroom. I fed her chocolate trifle. She enjoyed this.

My daughter arrived home just as the stv news presenter began telling the story about my blog. Two carers arrived, the dog began barking. I missed the story. I wheeled my mum through to her room. The cares got my mum changed into her pjs and I began serving dinner for children and I. We ate dinner and then we watched the recording of stv news. I was extremely pleased with the story.

http://news.stv.tv/tayside/1332273-carer-touches-readers-around-with-world-with-alzheimers-diary/

I was overwhelmed by the response I got from this story. My blog received a massive amount of hits in a four-hour period and many people sent me messages.I felt teary for most of the evening. To think that I sit in my house feeling isolated and alone and questioning humanity and then to received an abundance of support and encouragement and to hear about other people, who have been, or are in, similar situations made feel sad, happy, upset, needy and encouraged all at the one time.

I began thinking about emotions. Mainly, I wake up refreshed and motivated for the day. My mum smiles or my children say something quirky and I feel happy and full of joy. The carers arrive and work mode hits in, I watch my mum getting lifted and cleaned and dressed and fed and then I begin feeling depressed but also thankful that I have this help. Then we put my mum into the car and I begin feeling angry and annoyed. I drive my mum to the daycare centre and I have feelings of despair and sadness – and its only 10.15am. I think to myself, at the moment, everyday, I feel all these emotions, in such, a shorter period of time and I still have the rest of the day to go. How draining is that? What a life. I wonder how much longer this will go on for.

My children washed the dishes. My son came up with a plan regarding studying and his ps4. After a bit of negotiating the plan was cemented and all was well in ‘teenage’ land and ‘mum’ land.

I lay in bed and I was thinking about some of the messages that were sent to me and what some people have went through during their caring role, I felt a deep sadness that so many people have not had the opportunity to enjoy and cherish the time that they have had left with their loved ones.

I began thinking about palliative care and advanced Alzheimer’s and the fact that there was no cure for a person with Alzheimer’s. I was thinking that surely someone diagnosed with advanced Alzheimer’s should receive some form of palliative care.

Research suggests that a person diagnosed with advanced Alzheimer’s usually only has around a ten-year life span.  It is known that during these ten years that there is, either a gradual  decline, and/or, a quick decline. It would make such a difference if someone created some form of adapted palliative care plan/package to ensure that a person with advanced Alzheimer’s is able to have a quality, full and meaningful end to their life.  10 years is not a long time, apart from when you are living with the day-to-day struggle of managing an illness, or, managing a loved one with an illness. In saying this, one day I imagine I will ‘wakeup’ and think ‘where has the time gone’, it has flown by so quick.

All forms of death are sad, be it, a quick death, or a slow death, nothing can take away the heartache and grief that people feel when a person passes. To me, it is a missed opportunity, not to take advantage of the fact that, at present, we know, that a person diagnosed with advanced Alzheimer’s will die, Alzheimer’s kills. So why not put in a form of palliative care, and take care, of the people who will not be cured, who are vulnerable and who will not live the life that they were meant to live, before Alzheimer’s disease took hold.

I slept.

10th November

I woke up at 6.45. I am tired, I want to go back to bed. I woke my children. I checked on my mum and she was still asleep. My children left at 8am.

I checked on my mum and she was awake. I raised her bed, I put on her tv and I gave her a glass of water. She is very quiet, no smiles and there is no eye contact.

I cleaned my children’s rooms. Their rooms are quite tidy today. Whoop! whoop!.

The carer arrived at 9pm, as per arranged there was only one carer. I helped the carer wash and dress my mum and whilst the carer was feeding my mum her breakfast, I got ready for the day. We took my mum out to my car and put her into my car. I drove my mum to the day care centre.

Getting my mum into and out of my car – I have serious concerns about the outcome of the risk assessment which was carried out on myself and the carer getting my mum into and out of my car. I think back to an earlier time when my mum was assessed as being at a high risk whilst using a standaid. I also think back to an assessment that was carried out for the basic moving and handling of my mum (getting her up out of her chair) and it was deemed a high risk. I am wondering why, all of a sudden, the basic handling of my mum, in a precarious situation (getting into and out of my car) is now not a high risk. STRANGE…….

I drove home. I popped into my neighbours for a cup of tea and then I went home.

I received a letter from my local MPs office which included a letter from my local authority outlining their response to my complaint. I read it and put it with the other letters from the local MPs office. I’m deflated. I think, “I will re-read it later, when, and if, I have more energy”. My initial glance at the letter makes me shake my head and feel disappointed. We really do live in a paper pushing society.

I clean the house.

I drove to the day care centre and I picked up my mum. I drove my mum home. The carer was waiting for me. We helped my mum out of my car and put her into her wheelchair. We wheeled her into my house.

I cooked dinner. When I was cooking dinner I came across some research connected to communicating with a person who has advanced Alzheimer’s. I watched the a video on You Tube which showed the researches giving a talk on this subject. Very interesting and something that I have been doing with my mum for a long time now.

https://www.youtube.com/watch?v=9Ho4b89H-VM

The carers arrived and got my mum changed into her pjs. The carers then wheeled my mum into the kitchen. When the carers left we all sat down and ate diner.

I washed the dishes and then wheeled my mum through to the livingroom. We watched tv for a while. My mum was sitting quietly, I went over and held her hand and began speaking to her, she remained quiet. I blew a raspberry on her cheek and she spoke loud and clear and said stop that, then she giggled. I blew another raspberry on her cheek and she pursed her lips and made a face. Later she became sleepy, I asked my daughter to help me put my mum to bed.

I had a bath and then I went to bed.

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.