Day 96 – Day 102

16th Dec – 21st Dec

16th Dec

I woke up at 6.45am, it was a struggle, I was feeling tired and I did not want to get up. I grudgingly sat up and I went downstairs. I woke my children. I checked on my mum and she was sound asleep. My children left at 8am. I checked on my mum and she was awake. I raised her bed and I put on her TV and then I gave her a glass of water.

I am feeling anxious today as I am due to hear about the outcome of my complaint to my local authority. I am not holding out much hope of a positive outcome, however, there is a slight chance that it will be recognised that we are a family in need and that my mum should not have to pay the arrears which the local authority say she has, especially given that we were not informed of the charges at any point, either before, or after the transport service commenced and up until early September 2015

I cleaned my children’s bedrooms. A carer arrived at 9am we washed and dressed my mum and we got her ready for the day. The carer left. I gave my mum her breakfast.

I began ironing all our clothes.

I constantly checked my emails, hoping for the outcome of my complaint.

I had arranged cover for my mum so that I could do a spot of Christmas shopping. The carer arrived at 1.30pm. My phone rang. It was a lady from a local charity, she wanted to discuss an application I had filled in for funding for my mums transport. We spoke for around an hour and she said that she would present my application for funding at the next panel meeting, which is due to be held on the 15th of January 2016. She offered advice and referred me to a carer support worker. What a lovely and friendly person.

It is now 2.30pm.

I had a brief chat with the person who had come to look after my mum and then I left. 10 minutes later my mobile rang. I drove my car into a lay-by and I answered my phone. It was a lady from Alzheimers support, another 45 minutes on the phone. I gave up on the Christmas shopping.

I went to visit my friend for a coffee and then I made my way home. I meet my children on the way, I drove them home.

The carer asked me if I wanted her to help me change my mums pad. I said that other carers were due at my house at around 5pm. I then said to her that maybe she should help me to change my mums pad, as I was aware that there were problems with the carers schedule. I had not been emailed an updated schedule, therefore,  I could not be 100% sure if this visit had been changed or not. We changed my mums pad, I was glad we did, as my mum was in the process of having a bowel movement. The carer left.

My mum looked ill.

I telephoned the complaints department of my local authority and I asked if we were likely to hear about the outcome of my complaint. I was told that it was unlikely and that it would probably be next week now as the person who would be signing the outcome letter was not going to be in the office for the next two days and had not had time to do it today.

I made dinner and we all ate dinner

I was feeling fed-up. I was feeling disheartened at not receiving the outcome of my complaint. I was also thinking ‘no news is good news’.

A carer arrived we changed my mum into her pjs and then we put her to bed, my poor mum still looked unwell.

I sat with my daughter for a while, we chatted and watched TV.

I went to bed. I woke up through the night, my lower back was sore and I could not get back to sleep.

17th Dec

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 asleep.

A carer arrived and we began getting my mum ready for the day. Whilst the carer gave my mum breakfast I got ready for the the day.

I decided to call the complaints department of my local authority. I was hoping to find out the complaint officers findings regarding the expected £56.90 charge for my mums transport, as this would inform me of how much support I would need when I was away on my placement in January 2016. I spoke to the lady from the complaints department and she informed me that the charge would remain the same, she said she was sorry and that I could now escalate my complaint to the Ombudsman.

Based on this response I emailed my mum s keyworker an updated placement schedule reflecting the extra support I would need.

Myself and the carer wheeled my mum up to my car and we put her into my car, I felt terrible as I had held the carer back and I hoped that she was not running late because of my phone call to the complaints officer. I drove my mum to the day care centre and then I drove home.

I began looking at other ways of funding the costs for transport between January and June via charitable trusts etc… I contacted CAB to see if they knew where I could get support. I arranged an appointment with an adviser at Citizens Advice.

My mums keyworker sent me an email and said that it was doubtful that they would be able to cover the costs of support during my placement. She also said that she would need to speak with my brother and sister regarding decision making. I felt really angry at this. Maybe I was reading the email wrong but it is as though she is saying that because I am indicating that my mum cannot go to the day care centre that she will speak to the two people who have power of attorney over my mums care and finances so that they can override my decision!!! I am thinking that she does not understand that we simply cannot afford to pay £56.90 a week towards my mums transport costs. I like my mums keyworker and I feel that she understands how difficult things are. I decided not to respond to the email, as I would not have a clue as to what to say to her. Once again I am baffled. Maybe it is just the way I am feeling at the moment. I do not know.

I drove to the day care centre to pick my mum up. Whilst I was there I asked the lady who used to pick my mum up and drop her off at the day care centre if I could pay her a specific amount a week to pick my mum and drop her off. She said that she was going to look into it. She also said that she would be happy to do it on a voluntary basis, however, she is not sure if she would be covered through her insurance. I said that I could never expect her to transport my mum without paying something for it. She also said that if she can transport my mum that it would only be one day a week, as she only comes to our area on a Thursday now. She is such a kind kind person to offer to do this for us.

I drove my mum home. The carer was waiting, she helped me to take my mum into my house. We changed my mums pad and then she left.

I began making diner. Two carers arrived tonight woo hoo, they changed my mum into her pjs. The carers left.

We all ate dinner.

I sat my mum in the living room, she watched TV.

I began collating all my correspondence that I have with my local authority regarding my complaint about my mums arrears and the £56.90 transport costs.

I sent a message to a person I know asking if they knew of anyone who would be willing to transport my mum to and from the day care centre from January to June, explaining that I could only pay the person £25.00 a week. They got back to me and said that they could do it.

I went to bed. I slept through the night.

18th Dec

I woke up at 6.45am. I woke my children. I checked on my mum, she was awake. I raised her bed and I gave her a glass of water. My children left at 8am.

Two carers arrived at 9am. They washed and dressed my mum. They gave her breakfast whilst I got ready for the day. We wheeled my mum to my car and we put my mum into my car. I drove my mum to the day care centre. I drove home.

I began cleaning my house. I found that I could not focus because I was feeling worried about the implications of my mums keyworkers email the day before. I am thinking that I may not be able to take part in my placement which would mean that I would fail my degree. I am worried, stressed, anxious and depressed. I cannot focus on anything. I am constantly thinking about what I can do to ensure that I can continue with my placement, without having to rely and burden other people, who will have their own lives to get on with.

I drove to the day care centre and picked my mum up, we drove home. The carer helped me to take my mum into the house and we changed my mums pad. The carer left.

I received an email for the complaints department with the outcome of my complaint, two out of my fourteen complaints were upheld.

I began making dinner. We ate dinner. The carers arrived and changed my mum into her pjs.

I began thinking about the response to my complaint and I decided to investigate it a bit further, especially the section which says, that my mum is still entitled to pay £56.90 a week towards her transport costs. When reading the statement below this aspect of my complaint I noted that it states that on a National Level a person of pension age or above should be able to live on £177.00 a week. My mum is of pension age, however, she has a severe disability due to her advanced Alzheimer’s which obviously means that caring for her will cost more than caring for a person who is able bodied.

I spent ages looking for a breakdown of the £177 weekly cost of living and I could not find a breakdown. What I did find was my local authorities guidelines for the Charges and Contributions Policy and a section called Potential Disregarded Income. I checked this section to see if any of my mums benefits were listed, I could not find any. In all my searches I kept coming back to this document, which lists a person’s benefits in alphabetical order. I went through this list slowly and I came across a section which says the difference between higher rate attendance allowance and lower rate attendance allowance if the person does not receive night services.

My mum is on higher rate attendance allowance and does not receive night-time services, so I wonder why this amount had not been classed as disregarded income for my mum. I worked out the difference and if this amount had been included in my mums expected amount to live on she would only have to pay around £26.00 a week towards her transport costs, this amount she could afford to pay, at a push.

I began telephoning advice lines to find out what exactly Potential Disregarded Income means. No-one could help, no-one knows. I was told that I would need to telephone for this advice on Monday, when the lines are fully manned with staff with the correct expertise. AAAARGH! I was feeling impatient and I wanted the answer asap….

I also wondered how the first two parts of my complaint, which were with regards to the arrears that the local authority say that my mum has and how we were a) not aware of the charges and b) not notified of the accumulating arrears until a year after the transport service started, and the rest of my complaints were not upheld, as all my complaints minus the £56.90 were connected to the arrears. Hmmmmm!

I received an email from my local authority, it was a credit note for well over £3000.

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

We all went to bed. I slept like a log.

19th Dec

I woke up to the dog barking, I had slept in, the carers had arrived and were waiting at the door. I let them in. The carers washed my mum and dressed my mum. My mum was looking a bit pale today. The carers left and I fed my mum her breakfast. My mum feel asleep.

I began to clean the house, my mum slept through my cleaning. I gave my mum a glass of water, it was difficult as her head was down, her eyes remained closed and she was not opening her mouth, she slept and slept and slept. I was feeling worried. I was thinking that maybe she had been up all night.

I sent a message to my local councillor asking for him to call me, I wanted to ask if he knew anything about the potential disregarded income.

I made us all lunch. I had the same struggle with my mum, she slept through lunch, managing only a few bits here and there. Lunch dragged on until well after 3pm.

I began making dinner. I tried to give my mum another glass of water, she slept. My mum began to jerk, her arms and legs kept jumping for no reason. I tried to wake her up. I chatted to her, I rubbed her hair, I tickled her toes. I left her for a while.

The Councillor called me. I explained the situation to him and asked him if he knew anything regarding the potential disregarded income. He asked me to email him all the details and told me that he would get back to me. I typed up an email and I sent it too him.

Mum jerked and jerked and jerked. Fluid kept appearing on the tip of her nose. When I spoke with her one eye opened half way and the other opened ever so slightly. My mum looked as though she was holding her breath and then she would breath as though she was struggling to breath. I called NHS24. The lady I spoke to asked me lots of questions. The lady decided to send an ambulance.

The carers arrived. I explained to them that an ambulance was on its way. The carers attempted to rouse my mum, she jerked, her nose dribbled and her eyes struggled to open.

The ambulance arrived. Based on what I was telling them, they decided to take my mum to our local hospital. Alzheimer’s is difficult, all a medic can do is test a person’s ob’s, they cannot do the usual tests. This makes it difficult to diagnose a person with Alzheimer’s. Do you leave them and hope for the best or do you get them checked to make sure nothing more sinister is happening?

A while ago my sister and decided that if my mum was showing these types of symptoms that we would call NHS24 or 999 right away. We decided that if my mum was to become further disabled her life would be awful and much further disadvantaged. We do not want this for my mum, we want her to have as much as a quality of life as we can possibly give her. She still smiles, she still laughs, she still looks at you with a loving eye, she still cry’s and she still looks annoyed at you, she has a life and she is still living life, just not the way she used to be.

My mum left in the ambulance. My son and I drove to the hospital, my daughter was at her friends. By the time my son and I had arrived at the hospital my mum had been checked by the doctor. The doctor came into the room that my mum was in and explained that they would never be able to assess if she had a TIA or mini stroke, he said that there was not a lot that they could do at present and that I would have to assess her over the next few days. He said that he did not think a stroke had occurred as her face was not lopsided. He arranged for us to go home.

The hospital was extremely busy, even so, the nurse managed to arrange for rapid response to come and collect my mum and take her home and change her pad and put her to bed. By the time they left it was 11.30pm. We were all exhausted.

We went to bed. What a day.

20th Dec

I woke up with a start. I had slept in again. The carers were at the door. AAAAARGH! I hate sleeping in. The carers woke my mum, they washed and they dressed her. She was still looking out of sorts. The carers left. I fed my mum her breakfast.

My house looked clean. I ran a bath. What a relaxing afternoon. After my bath I checked on my mum. She was sleepy looking and not very well looking. Poor poor mum, I wish she were well. I miss my mum, the one who used to be, however, I love her no matter what.

I made everyone lunch and we ate lunch. My mum was sleepy all the way through her lunch, her eyes were okay and she had stopped twitching, which was a positive sign and a sign that she was feeling slightly better. Lunch took a while, my mum slept and then ate, slept and then ate. Eventually, she managed a whole sandwich and a cup of tea.

The carers arrived and changed my mum into her pjs.

I made diner and we ate dinner, again this was slow progress, but eventually my mum finished all her dinner.

Three of my children’s friends arrived, they all stayed overnight.

I asked my daughter to help me put my mum to bed. We did not walk her through to her room this evening as she was far to tired tonight. We changed her pad and put her to bed. My mum fell asleep quickly.

All the children took over my living room. What a noise. I went upstairs and wrapped some Christmas presents and then I went to bed.

21st Dec

I slept in again. The dog woke me, he was barking like mad. I ran down stairs and the carers were waiting at my door. I let them in. The washed and dressed my mum. The carers left. I gave my mum her breakfast. She was very alert this morning. I was feeling happy. It was nice to see her eyes again.

I decided that today would be a pj day and I hung around my house all day.

I received a call from the OT. I said to her that I was glad that she called as I was not going to make it to her training session today as I had kept my mum off day care, as she had been unwell. The OT said that she would re-arrange the training.

I cleaned my house. I made some pancakes, with banana, chocolate sauce and whipped cream. My mum devoured hers in seconds, she must be better.

My phone began to ring, I never answered.

I washed the dishes. There were loads and loads of dishes. My mum had fell asleep.

I checked my phone. An email had come through from my mums keyworker saying that she thinks that the funding for my new placement schedule might go through, as now that she had calculated the costs, it was not as much as she thought it was going to be. I called my mums keyworker. We discussed the placement schedule. We discussed my thoughts and attempts to ensure that my mum gets to attend the day care centre. I spoke to her about the disregarded income and I said that I had contacted my local Councillor. I said to her that I had noticed that her name was written on a lot of the statements under the outcomes of my complaint and I said that I felt this was wrong as she was not the one to blame. I apologized to her for this and I said that I knew she done as much as she could for my family.

I noticed I had a message on my phone, it was the OT who said that she had a meeting with the carers and that they had discussed the risk assessment for moving and handling my mum. She said she felt they all understood the risk assessment and she asked if I could call her so that she could arrange to come to my house and talk to me about the risk assessment.

The carer arrived and we changed my mums pad. I dropped my daughters friend at her house and I drove home.

It was too late to call the OT, I would need to call her another day.

I called the Councillor to see if he had heard anything regarding the disregarded income. He had not, however, he said that he would call me as soon as he does.

I made dinner and we ate dinner, my daughter offered to feed my mum. It was fantastic to get a break from this.

The carers arrived and put my mums pjs on, I asked them to put her to bed as she was sleepy again. The local authority carer gave me an updated risk assessment for my mum and began explaining the content of the training. The carers left.

I went for a bath and then I went to bed.

22nd Dec

I woke up at 6.45. I left my children sleeping as they were off for the Christmas holidays. I cleaned the house. I also checked on my mum and she was awake. I raised her bed and I gave her a glass of water. The carers arrived and washed and dressed my mum. One of the carers gave my mum her breakfast.

I wheeled my mum through to the living room. She looked better but not 100%. I kept her off her day care today.

I wrote some Christmas cards and I wrapped some presents. My children woke.

I made everyone lunch and then we ate lunch. I washed the dishes.

The mail arrived. I received an invoice from my local authority telling me that my mum still owed them over £1600. Merry Christmas to you too local authority. I was feeling annoyed again. It is an emotional journey.

I began making dinner. We all ate dinner. My mum ate like a horse. This made me happy, she is back on track.

I washed the dishes. The carers arrived and changed my mum into her pjs. I wheeled my mum into the living room and switched on the TV. I went back to wrapping presents.

Later, I asked my daughter to help me put my mum to bed. We walked her through to her bedroom, we changed her pad and we put her to bed. My daughter and I watched a movie and then we went to bed.