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.

 

 

 

 

 

Day 89 – Day 95

9th Dec – 15th Dec

9th 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 cleaned my children’s bedrooms. I checked on my mum and she was still fast asleep. The carers arrived at 9am and began to get my mum ready for the day.

I telephoned Audit Scotland to find out how my complaint was progressing, I was told that someone would call me back.

The carers gave my mum her breakfast whilst I got ready for the day. The cares left.

I wheeled my mum through to the living room and I switched on the TV for her.

I began putting together a spreadsheet, outlining the support that I am going to need when I begin my placement for a University degree that I am trying to complete. It is taking forever to complete this degree as I have had to defer my studies for two years in a row due to my caring roll and illness. Maybe, next year I will manage to complete another year of my degree.

It will take a while to complete the placement schedule as I need cover from my caring duties from January 2016 until June 2016. I had a think about what family and friends I could contact to ask for help. This is so that the support I will need from my local authority will not be over the top. I was feeling worried and I wondered if they would be able to provide the support that I will need in order to complete my placement. Only time will tell.

I received a letter from the hospital telling my that I have an appointment with the orthopaedic consultant. This is to discuss my shoulder and arm pains. What a nightmare, as the appointment is scheduled whilst I am on placement. I will need to ask for a day off and I have not even begun the placement. Stress aaaargh!

My mums keyworker emailed me regarding an event called ‘cares choices carers voices’, I read the leaflet and I found it difficult to understand. I was not too sure what it was all about. I telephoned the number listed on the leaflet and I left a message asking them to call me back. Maybe they can enlighten me and tell me all about ‘carers choices carers voices’.

My mums keyworker emailed me again and said that she would contact the older peoples mental health team and find out what they can offer my mum. She also confirmed that she had arranged for therapist vouchers to be sent out to me and also respite vouchers. Both arrived with the post today.

I made my mum and I lunch, I fed my mum, as I fed myself. I washed the dishes and then using the standaid I changed my mums pad.

I cleaned my house.

My children arrived home from school at 4pm. I asked my daughter to help me stand my mum. We walked my mum around my house and then we sat her in her chair in the living room.

I began preparing dinner.

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

I received no call back from Audit Scotland hmmmmm!

I began moving all my books for my studies upstairs to my bedroom. Fortunately, my bedroom is big and has ample room for a desk and chair, it is quiet and peaceful, all the better for studying.

My daughter helped me walk my mum through to her bedroom, we changed her pad and we put her to bed. I watch TV for a short while and then I went to bed.

My shoulder is not as sore as it was and I am managing to get a good nights sleep.

10th Dec

I woke up at 6.45am. I woke my children. It is snowing today Oh! No! I am hoping that my children will be able to get to school. I checked on my mum and she was fast asleep. My children left at 8am. They never came back so the bus must have picked them up. Just in case, I called my daughter to check that they had been picked up okay. They had been picked up and were down at the second bus stop waiting for their next bus to take them to school. Phew! Thank god for that. I cleaned my children’s bedrooms.

The carers arrived at 9am and began getting my mum ready for the day. Whilst they done this I got myself ready for the day. After my mum had eaten her breakfast we wheeled her to my car and then we put her into my car.

I drove my mum to the day care centre. I asked the lady from the day care centre if there was any news regarding the mini bus picking my mum up and taking her too and from the day care centre, the lady had not heard anything. She had said that the transport service was possibly going to be picking my mum up and taking her to the Christmas party next Tuesday, for free, as all the other residents were getting free transport on that day. This was being discussed further between all the relevant people.

I received a letter from the Ombudsman saying that they would not be able to progress with my complaint – how depressing – elderly vulnerable people like my mum are so unprotected and I cannot understand why this is the way it is, it baffles me. I wonder if I am the only person that sees it this way, or do others, and they just do not say it or complain about it.

I contacted Audit Scotland again and asked why no-one had returned my call. The woman who answered the phone knew my name, hmmmm! and she said that she was sorry that no-one had called me back and that she would pass the message on again and that someone would call me back today.

I received an email from my mums keyworker telling me about a fuel poverty workshop, however, I cannot go to this, as I will be on my University placement when the workshop takes place.

I received another email from my mums keyworker saying that she had spoke with the wheelchair people regarding an application for my mum to obtain a motorized pack for her wheelchair and that they are going to send me a referral form. She explained that they have had some kind of system failure and this is why I have not received a referral form before now. I emailed her back and asked if she thought that they might be able to fast track the referral, given the length of time it has taken to send out the referral form. Given, that I had requested a referral for a motorized pack when my mum first moved in with me, which was well over a year ago.

I telephoned my friends and family and asked for help during my placement. My sister can cover one week in April, my dad can cover 4 weeks in total and my brother can cover one week in April. My friend can cover everyday from 3.30pm until I get home at 6.30pm. I updated the schedule to reflect what help I can get during the months of January and June.

I made lunch for mum and I. I fed us both and then I washed the dishes. I began to clean my house.

My children arrived home from school at 4pm.

I made dinner for us all, we ate dinner and then my children washed the dishes. Two carers arrived and they changed my mum into her pjs.

Audit Scotland had still not called me back, I wondered why. I am losing hope of any fair resolution to my complaint.

I watched TV for a while and then I asked my daughter to help me with my mum. We walked her through to her bedroom and changed her pad and then we put my mum into her bed.

Bedtime for us all. Still no pain in my shoulder and arm.

11th Dec

I woke up at 6.45am. I woke my children. It had been snowing through the night. I checked on my mum and she was fast asleep. My children left at 8am.

My mum was not at the day care centre today as the snow began to fall extremely heavy and outside my house looked a bit like winter wonderland. If my car got stuck in the snow I would not be able to get my mum home, without, help from the emergency services.

The carers arrived around 9am. They washed and changed my mum and then they gave her breakfast. The cares left.

I contacted the Ombudsman and after around one hour discussing my complaint with the lady on the telephone she said that she would pass my complaint onto a colleague and that they would investigate my complaint a bit further and then decide if they can take it forward. Again I am losing hope of any fair resolution to another complaint that I have registered.

I contacted Audit Scotland again and the lady said that someone will call me back. A little while later I received a call whoop! whoop! at last. The lady from Audit Scotland said that she would contact the auditor today and she would hopefully get back to me within the next couple of days hmmmm! She said that they cannot deal with individual cases and would only be doing a full audit if other people had registered similar complaints.

I cleaned my children’s bedrooms. I then I made lunch for mum and I.

I telephoned my practice teacher to gain some information regarding my up and coming placement and also to find out which day will be my study day. This was so that I could include this day in my schedule of support, as I will not need cover for my mum on that day. My practice teacher was extremely helpful and sounded very friendly.

My children arrived home at 4pm. The carer arrived and we changed my mums pad.

I made dinner and we ate dinner. The carers arrived and put my mums pjs on, then they sat my mum on her chair in the living room.

It is my weekend off. My sister had travelled by train to my house, as she did not want to drive in the snow. I don’t blame her, I would have done the same. I picked her up from our local train station, at around 8.15pm. My sister took over our mum.

Time for me to have a break.

I had an early night tonight, I was feeling extremely tired.

12th Dec

I woke up at 6am. My daughter had a riding competition. We left at 7.30am.

My daughter and I spent the day with horses, it was cold but fun. We arrived back home at around 4.30pm. My sister had prepared dinner. We all ate dinner. My sister fed my mum. It was great to be able to eat my dinner without feeding someone at the same time.

I spent the rest of the day cleaning my room and chilling out on the sofa. After my mum went to bed my sister and I decided to watch a movie, we began to download the movie that we wanted to watch. 10 minutes later and the movie was still downloading. 20 minutes later and we were still waiting. 30 minutes later and we were still waiting. I gave up and I went to bed. AAAAARGH!

13th Dec

I had a long lie, I woke up at 9.15am. I made a coffee and went back to bed. Later, I went downstairs and chatted with my sister and then I made us some poached egg on toast. I drove to the shops to get some messages, we were out of milk and my electricity key was running low.

I drove home and my sister made us all a cup of tea.

Then I began making some home-made vegetable soup.  What a beautiful smell. I ponder whether or not to make home-made bread. I decided not to bother. Instead, I made brandy snaps and queen cakes, I just love home-made food it always tastes so much better than ‘bought in’ food. I will need to cut down in my food intake, the cold weather is making me eat and eat and eat.

My sister normally leaves at around 4pm on a Sunday. Because my sister travelled by train she would not be leaving until 6pm.

Earlier in the week I had arranged for someone to look after my mum between 4pm and 7pm today as I had planned to take my children out for a while. Oh! Dear! What to do!

Taking my children out today became a problem. The first problem was I had an overlap of care due to the time of my sisters train and the second problem was that I could not get my car up the hill next to my house because the ground was like a sheet of ice. Hmmmmm! What to do about the carer who was due to come to mine at 4pm.

I decided to keep the arrangement in place as I had decided that whilst the carer sat with my mum I would wrap up some Christmas presents. Also, it was a new carer and it would give her time to get to know my mum.

My friends husband picked my sister up at 5.30pm and took her to the train station.

The carer left at 7pm.

I watched TV for  a while and then I asked my daughter to help me to walk my mum through to her bedroom, we changed her pad and then we put her to bed.

We all went to bed.

14th Dec

I woke up at 6.45am. I looked out of the window and everywhere was white, we had an extremely heavy snow fall through the night. I left my children sleeping. I sent a message to the bus driver asking if he would be picking my children up for school. I checked on my mum and she was fast asleep. The driver got back to me saying that he would not be making it up my hill, it was too icy and slippery, therefore, he would not be picking my children up for school. A day off school, my children will be delighted. Me – not so much………

I received a telephone call from the home care office, they said that the carers would not be arriving until 11am, this was due to staff being off and the weather conditions. I said that this was fine and I explained that the carers might have difficulty getting to my house, due to the weather conditions. I said that if they did not manage that my daughter and I would manage my mum. I checked on my mum and she was still sound asleep – lucky mum.

I received another telephone from home care saying that one of the carers who was scheduled to come at 11am would not be able to make it, as the roads, where she was coming from, were horrendous. They explained that one carer was on their way to me now and they asked if could help. I said that this would be fine. The carer arrived, we washed and dressed my mum. The carer fed my mum her breakfast.

I contacted the day care centre and I said that my mum would not be in today as we were snowed in. The lady said that they had arranged for my mum to get picked up tomorrow by a wheelchair access taxi, free of charge, for the Christmas party, I said that this was great and I assumed that this would be weather dependant.

I asked the lady from the day care centre if they were any further forward with arranging for the mini bus to pick my mum up and drop her off from the day care centre. She said she had not heard anything about this and did not know if it was going to happen or not. I asked her who I could contact to find out this information and she gave me the number for a lady who sits on the board from the community council. I dialled the number, no answer.

My daughter came through to the living room with a pair of summer trousers on, a ski jacket, a furry hat on her head, a pair of plimsoles on her feet and a water bottle in her hand and said that she was going up to her friends house to go sledging. I told her to get changed and she said, “no mum, I am fine like this”. She is lovely and crazy ‘my little girl’. I told her she was going nowhere unless she had her snow suit on her body and snow boots on her feet. She promptly changed into appropriate clothing and then left to meet her friend.

I received an email from my mums keyworker explaining that my mum was going to be picked up, free of charge, for the Christmas party and that this was only going to happen as a ‘one off’.

I completed my placement schedule and I emailed this to my mums keyworker. My mums keyworker emailed me back and asked me what the arrangements were going to be for my mums transport to the day care centre when I was away on my placement. I emailed her back saying that I have asked for the mini bus to pick my mum up on the Monday and the Tuesday, however, I am waiting for them to get back to me and that if it turned out that no-one could take my mum to the day care centre then I would have to re-do my placement schedule to reflect this.

I telephoned the lady who sits on the board from the community council. I wish I had not. What an abrupt and unfriendly manner she had, maybe this is just how she sounds – who knows! As soon as I said who I was and why I was phoning she went into a torrent of excuses why they could not pick my mum up using the mini bus. She said that a drivers assessment was carried out and that the two mini bus drivers who went out to my house, in a car, said that there was no way that they would be able to pick my mum up, this was due to turning space etc…. etc…

I said to her that this was strange as a mini bus came to my house and picked my children up for school and that they had no problems. She said that it must be a different type of bus. She said that there was no way that they could do it and that it had been assessed. I asked her to send me out a copy of the drivers assessment. She asked why. I said to her that I would like to read through it. She said that this was an unusual request and that she would have to consult with the other committee members. I asked her when she would be able to get back to me regarding my request. She said before Christmas.

So this is it, from January 2016 my mum will be excluded from her community and society in general, we cannot get her out, apart from to sit in my garden, with the birds and the other little garden animals. What a life, what a society.

Just because I have opted to care for my mum my life and my children’s lives have now become extremely disadvantaged, we cannot prosper and we now need to live a life begging for help and reliant on disjointed services. My poor poor mum, who has gave so much to society, is now being exiled from her community and the society she gave so much too, when she could.

I tried to telephone my mums keyworker to make her aware of the situation with the community bus. An automated voice informed me that there was no-one available to take my call. I sent her an email asking for her to call me.

I made lunch for everyone and then we ate lunch. My mums keyworker called and I explained the situation surrounding my mum and the transport to the day care centre.

I contacted the lady who sits on the community council and asked her to call me back. I wanted to ensure that the drivers had went to the correct address as an oil tanker can get to my house and also my house sits on a ring road which means the community mini bus would not have to turn but could drive right round the ring road and get back onto the main road. I was also going to suggest that I could wheel my mum up to the road end, if it made it easier for the mini bus driver.

I called another person who sits on the community council and I explained my mums situation, I asked if he could represent my mum at the next community council meeting. The man I spoke with asked me to email him the details. I emailed him.

I received an email from the complaints department from my local authority saying that I would receive the outcome of my complaint within a couple of days. I emailed back and said this was fine.

I took the dog for a walk, he loved the snow and ran and jumped and dug his snout under the snow.

Once home I began making dinner for everyone, my daughter arrived with her friend, her friend was staying overnight.

When I was making dinner the home care office called to say that they would not be able to double up on the care for my mum, on some occasions this week, due to sickness. I said that this was fine. I was extremely aware that I should be marking this down, however, I was holding my phone with my shoulder, I was making dinner and I was trying to feed my mum all at the same time. Tonight I wanted to eat my dinner without having to feed my mum at simultaneously.

My shoulder feels better, lets hope that it stays that way.

The lady from the community council called me whilst I was on the phone to home care, I called her back. I asked her about whether or not the drivers had came to the correct address and I explained about the oil tanker and the ring road. She said to me that the drivers decision was final as they were volunteers and if one said no then no it would be. She also said that the decision needed to be between the day care centre and the drivers. I said that I would be willing to push my mum to the road end and I asked her if I should put this to the tryst to see what they will say. She said its up to you however the drivers decision is final.

I got the impression from this lady that they just do not want to travel to my area to pick my mum up. I know that the road is fine for a mini bus to pick my mum up. I have ‘heard’ that this kind of situation has arisen before and that the community council were adamant at that time that the community mini bus was not going to be travelling to my area. I wonder!

What a day, what a life, what a mess…………..

The carers arrived and they changed my mum into her pj’s. They then sat her in the living room. We all ate dinner and then I washed the dishes.

All the children went outside and sledged down our hill in the dark. They came back wet, cold, with red noses and big smiles, looking for hot chocolate and squishy cream and marshmallows.

I watched TV for a while and  then I asked my children to help me put my mum to bed. We all went to bed.

15th Dec

I woke up at 6.45am. I looked out of my kitchen window and the ground was still white, however, no fresh snow had fallen, this meant that my children would be going to school. Whoop! Whoop! Also, I am hopeful that the taxi will be able to pick my mum up and take her to the Christmas party at the day care centre. I wake my children. I checked on my mum and she was awake. I raised her bed and I gave her a glass of water. My mum looked a bit sleepy so I did not turn on her TV.

The carers schedule indicates that the carers will be arriving at 9.30am. This would not leave enough time for my mum to get washed and changed in time for the taxi which was meant to be arriving at 10am. As soon as my daughter was ready for school I asked her if she could help me to get my mum out of bed and on to the commode. My mum was soaking, both her top and bottoms were ringing wet – my daughter did not look happy. However, she helped me anyway and we put my mum onto the commode.

The bin that holds all my mums used pads was full, I emptied the contents of the bin into two bags and when my children left for school I asked them to carry the bags up to the bins at the end of our road. I was not in my children’s good books today, oh! dear!

I checked on my mum, she was looking very pale. I left her a little while longer. A carer arrived, it is 8.50am.  The carer explained that she was the only carer on shift this morning. We washed my mum and we dressed my mum. The carer fed my mum breakfast whilst I got ready for the day. The carer left. I brushed my mums teeth and put on her poncho, I placed a Santa hat on her head and a red glittery scarf round her neck. My mum is ready to go. I looked out of the window and I though that maybe the taxi would not come as my drive and the road look awful, slushy, slippery and snowy, hmmmm!

The time is 9.45am. I decided that I should begin wheeling my mum up the garden path. The journey begins. I pushed her wheelchair down the ramp, it was covered in snow, my progress was slow. Eventually, we reached the driveway and I began to push the wheelchair up my drive, the wheelchair did not budge, there was too much snow. I turned the wheelchair around and I began pulling the wheelchair backwards, that worked better. The taxi driver arrived. He could not drive down the slop to the front of my driveway, as it was to slippery, so he parked on top of the small hill. He walked down to my drive and together we pulled my mums wheelchair up my driveway. Slowly, we managed to pull and push my mum and her wheelchair up the drive and up the hill and eventually we got her into the taxi. I am feeling delighted that she is going to her party.

Once the taxi was safely away I walked down to my house, I put on the dogs lead and I took him for a walk in the field next to my house, I was puffed out by the time I got home walking up a hill in the snow is exhausting, I must be getting old aaaargh!

I cleaned my house and then I wrapped some more Christmas presents. I heard a car tooting its horn, my mum is home. I put my jacket on and I went out to help the taxi driver, I am absolutely dreading pushing my mums wheelchair down the hill, as it is like an ice rink now. As I was walking up to to the taxi my friends husband arrived and kindly took over, he wheeled my mum down to my house, I felt relieved, it feels good when people are kind. I asked him how he knew it was my mum in the taxi and he said that he was at a friends and noticed the taxi parking at the top of the hill, he knew that we would struggle and came over to help.

My mum was sleeping all the way down the drive and continued to sleep when she arrived indoors. I left her. It must have been a good party. The carer arrived and together we changed my mums pad. My children arrived home. I told them to clean their rooms.

I received a call from home care, I missed the call. I called home care back and I was informed that another member of staff had went off sick. Therefore, I might not have a double up of carers for part of the week. It is great that the time is taken to keep me up-to-date with what is happening, as then I can prepare and I know what to expect. The person from the home care office had said she was concerned that my arm and shoulder would become sore again, due to me helping with my mums personal hygiene. She said that she would email me an up-to-date schedule so that I was aware of when I would be required to cover and help with my mums personal hygiene.

It must be an awful job to work out the carers schedule as things change all the time. I am glad it is not me completing the carers schedule, it must be difficult to organise. I wonder if there is an easier way to do it.

I made dinner for everyone and then we ate dinner. The carer arrived and we changed my mum into her pjs. My mum is still sleepy so we put her to bed.

Later, I give my mum a cup of tea. She keeps falling asleep and I keep waking her up. I gave up. I watched TV.

I have received no news regarding my complaint to my local authority, it should hopefully come tomorrow

I went to bed. I woke up through the night, my arm was sore, I struggled to fall back to sleep. I tossed and turned all night. I need my sleep aaaargh!

 

 

 

Day 82 – Day 88

2nd Dec – 8th Dec

2nd Dec

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

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

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

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

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

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

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

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

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

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

3rd Dec

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

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

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

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

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

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

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

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

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

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

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

4th Dec

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

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

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

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

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

I drove home and I went for a sleep.

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

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

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

5th Dec

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

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

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

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

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

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

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

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

6th Dec

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

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

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

I made us a cup of tea.

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

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

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

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

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

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

I went to bed.

7th Dec

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

How stupid I should have checked on my mum.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

8th Dec

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

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

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

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

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

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

Day 75 – Day 81

25th November – 2nd December

25th 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 awake. I put on her TV and I raised her bed. I gave her a glass of water. She was looking quite happy this morning. I said good morning and I stroked my mums cheeks, she looked at me and she smiled.

My mum s keyworker was visiting my mum today at 9am. I quickly tidied my house and then I changed into my outdoor clothes. I checked on my mum, she was lying quietly and staring into space. I tickled her feet and there was no response, I tickled them again and my mum lifted her feet up, she giggled and then smiled.

At 8.45am I saw my mums keyworkers car pull into my drive. I opened my door and I let her in. We chatted for a while. My mums keyworker said a few issues had been raised during the adult protection investigation. She said that the carer who was interviewed said that we were not using the equipment whilst changing my mum. She said that the occupational therapist would need to come out and re-train people on using the equipment.

I explained that when my mum was ‘more’ able and when I was one of the carers that I tended to stand my mum up and the local authority carer stood close by just in case my mum wobbled, I further explained that when my mum was ‘less’ able we used the equipment. I said that now that there were two local authority carers instead of myself and a local authority carer then it was up to them what they done and that all the carers knew where the equipment was stored. I also explained that I had seen the local authority carers taking the equipment into the house. I further said that it seemed that the carer who was being investigated seemed to be diverting away from the problem, which was her ability to care. I added in that all the carers minus this one carer were fantastic, they were professional, they looked after my mum well and that they should go up for an award for their level of service. I pointed out that all the other carers worked well with me and got on well with me and that there were no issues, which highlights the problems surrounding the carer being investigated.

The carers arrived at 9am. I said hello and walked them through to my mum’s room. I then went back to sit with my mums keyworker. What a busy house this morning.

Whilst I was chatting to my mum’s keyworker I received a call from my neighbour who explained that when she was leaving in her car that she had reversed into a car parked near my house and explained that there was a small bit of damage on the door. I asked the people in my house if the car described by my neighbour was theirs. It was my mum’s keyworkers car.

My mum’s keyworker left.

The carers said to me that my mum was quite distressed when they were using the standaid, I am hoping that this is not related to my mum screaming when the carers where in my house last Wednesday. Feeling annoyed.

I emailed my mum’s keywork and explained what the carers had said to me regarding my mum being distressed when they were using the standaid and that I hoped that this was not due to the incident that happened with the carer worker last Wednesday and that I would monitor my mum.

I then went over to my neighbours house and give her my mum’s keyworkers telephone number.

I made lunch for my mum and I. I then walked my mum around the house. I had real difficulty standing her up but after a lot of hanging on and lot of balancing, we got there. My back and shoulders were aching afterwards. I know it is not the correct thing for me to be doing considering the pain that I have in my shoulders. I have thought and thought and thought about this and decided that manouvering my mum and allowing her to keep her mobility for longer far is more important than me having sore shoulders. My mum’s diagnosis of Advanced Alzheimers means she has a very short life span and if keeping her mobile extends her life span then it is a ‘no brainer’, I do not even need to think about it.

I received an email from the financial assessment officer from my local authority who explained that I cannot appeal the decision made by the discretionary panel and that their decision was final. What a joke, however, it was not an unexpected response.

Today was the day that I had arranged an appointment with a mobility car company. The man arrived at 11am. I was hoping to be able to trade in my private car for a wheelchair access car. What a disappointment as they would only give me £2500 for my car which would not nearly be enough to cover the cost of a wheelchair access car.

I contacted my doctors surgery and I left my number for the doctor to call me back to give me the results of the bloods that had been taken from me and also to give me the results of the ultra sound scan that I had done the week before.

I contacted the blue badge department to ask if they now had all the correct information and to ask if they would be able to send me a blue badge, so that parking my car would be easier, when I had my mum in the car. The lady was really helpful. She checked my information and then said she would call me back. Around half an hour later she called me back and said that they had all the information they required and that if I paid a £20 pound charge over the phone they could send out the blue badge. I paid the charge and she said that I would have the blue badge within 7 – 14 working days.

I decided to spend some time going over the scoping letter which was sent to me by the complaints department of my local authority, regarding my mums arrears and the expected transport costs. I emailed some corrections to the complaints officer.

Later the complaints officer called me and said she had made the amendments, she went over these with me and then sent me an email confirming the points.

I changed my mum’s pad and then sat her in the chair in the living room.

I asked my friend to look after my mum.

I collected my children early from school today as we all had appointments at the dentists. I needed a filling and both my daughter and sons teeth were looking good. I felt proud. As a child I had lots and lots and lots of fillings, therefore, it made me feel good that my children are taking good care of their teeth.

We drove home. I prepared dinner and then we all ate dinner. The carers arrived and changed my mum into her pjs. They then took her through to the living room and then sat her in her chair.

I began working out my finances in preparation for Christmas. I had already began purchasing items for Christmas and I was hoping that I would be able to afford the rest of the presents that I needed to buy.

After shuffling my finances around and working out what payments I could put off until Jan/Feb time, I asked my daughter to help me walk my mum through to her bedroom, we changed her pad and we put her to bed and then I went to bed.

I could not sleep……..

26th November

I woke up at 6.45am. Although I feel better within my self my shoulders are still throbbing. I woke my children and then I checked on my mum. She was still asleep. My children left at 8am. I checked on my mum, who is still in the land of slumber.

The carers arrived at 9am. They washed my mum and then they changed her into her. Whilst they were feeding her breakfast I got ready for the day.

The carers wheeled my mum up to my car and then they helped me put my mum into my car. It is such a strain and I am feeling that I cannot keep doing this as I am feeling extreme pain in my arms and shoulders when I am trying to get my mum’s feet into the foot well of the car. It so depressing.

I drove my mum to the day care centre and then I drove home.

I telephoned the Citizen Advice Centre and asked them for advice  regarding the outcome of the discretionary panel. They sound fairly shocked regarding the outcome. They made many suggestions alongside recommending that I contact my Local Councillor and seeking advice from the ombudsman. I explained that I had contacted my Local MP. The lady explained the difference between an MP and a Councillor – you learn something new every day. I did not realise the difference and the importance of these differences.

I contacted my local councillor – he contacted the welfare rights team based within my local authority and asked them to contact me to ensure that as a family we were getting all the support that we were entitled too. He said he would look into the issues surrounding the arrears that the local authority say my mum has and also the £56.90 transport costs, however, he said that since I had made a formal complaint and that I had also complained to Audit Scotland that he might not be able to help.

I contacted the ombudsman to seek advice regarding my existing complaint with my local authority. They said that after I have been through to full complaints procedure that I should then contact them, sending them the full outline of my complaint.

A lady from the Welfare Rights Team called me and we discussed all the support that my family received, she explored the different types of support that I could apply for, some of which I was not aware of, this was extremely helpful.

I picked my mum up from the day care centre. When we arrived home a carer was waiting who helped me get my mum out of the car and then we took her into my house.

I prepared dinner and then we ate dinner. I washed the dishes and my son finished feeding my mum.

The carers arrived and changed mum into her pjs. My mum was exhausted so the carers put my mum to bed, they raised her bed and turned on her tv.

My mum did not fall asleep so I made my mum a cup of tea and sat with her for a while.

I went for a nice hot bubble bath.

We all went to bed.

27th 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 asleep. I cleaned my children’s bedrooms and then I made myself a cup of tea. Lately, I have been thinking that I will need to begin my exercise regime again. When the double up of carers was a ‘hit’ and ‘miss’, due to staff availability, I had found it hard to maintain my exercise regime, however, now that things seemed more settled and each morning two carers had arrived I was thinking that I should be able to exercise again.

The carers arrived at 9am, they washed my mum and they dressed my mum. Whilst they gave her breakfast I got ready for the day. During this, the lady from the Welfare Rights Team contacted me and said that she had filled out the forms that needed filled in for me to obtain extra support and needed to ask me some questions so that she could complete the forms.

This surprised me as I never realised that she was going to fill them in as I thought she was going to post them to me for me to fill in. I was delighted, as I am so fed up of filling in forms and writing complaints, that another form may have taken me weeks to fill in. It is nice to see the positive side of organisations, whereby, a person within a team of an organisation is proactive, understanding, efficient and thoughtful.

Once the call was over myself and the carers took mum to my car, we put her in and then I drove her to the day care centre. Then I drove home.

I began making scotch broth soup. Two people came to my house to service my mums equipment, again they were lovely and chatty. The equipment passed the assessment.

I cleaned the house.

My local Councillor contacted me to ask how I got on with the Welfare Rights Team.

The doctor called me and explained that all my bloods had came back normal, however, he asked me to make an appointment to go in and see him regarding my shoulder pain and said that he may make a referral to an Orthopaedic doctor. I made an appointment, the first appointment was for next Tuesday. I then decided to find out what an Orthopaedic doctor was.

I collected my mum from the day care centre, whilst there the community mini bus driver asked me what my address was, I am hoping that they will begin driving my to and from the day care centre.

I drove home, the carer helped me take mum into the house.

I prepared dinner and then we ate dinner.

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

My sister arrived, my sister took over – now I can have a break …….

28th November

I had a long lie today, it felt like heaven, it felt good. I did not want to get up out of my bed. I nipped downstairs and made myself a coffee, I went back to bed, drank my coffee and read my book.

Later I went back downstairs and sat around my living room, watching tv, chatting with my sister and chilling out.

I made us all lunch and then I washed the dishes. I went upstairs and began sorting out all of my paper work, which has been desperately needing done. I collated all the information that I needed for the complaint that I have been asked to send to the ombudsman.

I then made everyone their dinner. We ate dinner, my sister feed my mum and I feed myself. My sister washed the dishes.

Later, after my mum went to bed my sister and I watched a movie and then we went to bed.

29th November

I woke up at 6am and began getting everything ready for the day. My daughter had a riding competition today. I woke my daughter. My sister woke up and said that she was going to drive her car down to the bottom of my hill as the forecast said that it was going to snow today.

My daughter and I left the house, we picked up one of my daughters friends and then we picked up another of her friends, we drove to the garage as my car needed fuel and then we drove to the field where the horses are kept, I was running late – again!

ITS SNOWING AAAAARGH! I hate driving in the snow.

We arrived at the field and I sat in the car….. So lazy, but it was so cold. All the children helped prepare the horses for the riding competition, I watched them from the car and thought ‘the poor little sausages’……

My sister was travelling back to Glasgow today so I telephoned her to let her know that the snow was heavy and that it was lying on the roads. She decided to leave my house early, she felt extremely guilty about leaving my son in, on his own, with our mum, however, after a conversation about safety on the roads, it was decided that our mum was safe where she was, with my son and that it would be safer for her to travel earlier and get home before the road freezes – it was the best choice as the weather became worse as the day wore on.

My sister left early.

My daughter competed in the competition and was placed 5th in one round and 6th place in another round, she was delighted, all the group received a rosette, we left cold and happy.

My sister telephoned me and she was petrified, the driving conditions were shocking. She had yet to arrive home.

I called my son and he did not answer the phone. I called again and again and again. Aaaargh! I hate when this happens because now I feel worried.

My daughter and her two friends drove to the horses field, they were feed and tended too, then we left, homeward bound. My son called me and asked me what I wanted – relief…..

I dropped my daughters friends off and then I drove home. Once I was home I asked my daughter to help me change my mums pad. I then took my mum a walk around my house and then I sat her on her chair in the living room.

I made dinner and then we ate dinner. I washed the dishes. The carers arrived and they washed my mum and changed her into her pjs. Mum had a bowel movement and was very tired looking, I asked the carers to put my mum to her bed.

My friend had left a couple of frantic messages on my phone, she could not get home because of the snow, she was snowed out of her home. I told her to come to mine and to stay with me until she could get back home. My friend arrived cold and miserable. I gave her some pjs and a nice hot bowl of scotch broth soup.

Bedtime…

30th November

I woke up at 6.45. I woke my children. I checked on my mum and she was fast asleep. It had snowed heavily throughout the night and the school mini bus could not make it up our hill to pick my children up for school. My children got a day off school. I decided that my mum should stay off from the day care centre as the roads looked awful and I did not want to take the risk of driving to the day care centre.

The carers arrived at 9am, they washed and dressed my mum and then they gave her breakfast.

I cleaned my house. My friend left for her work. I began going through the ombudsman complaints form. It was a short form, however, I had to think about what to write and I had to re-live the memories of when my mum came home from the care home with 28 bruises on her body, this was very upsetting for me.

I had a break and during this break I made lunch for everyone. We ate lunch and then I washed the dishes. I asked me daughter to help me change my mum’s pad and then I walked my mum around my house. After this I sat my mum on her chair in the living room.

I went back to my complaints form, once I had completed the form I printed off all the correspondence from the people who dealt with our complaint at that time. I set all the information out and wrote notes on the correspondence, so that it made sense, to anther person reading it.

The carer arrived to help me get my mum out of the car, I apologised as I had forgotten to send her a message to tell her not to come. She helped me change my mum’s pad.

I began preparing dinner. My friend arrived back explaining that she still could not get home. It is lovely to have some adult company. We ate dinner and then sat and relaxed in the living room. My friend helped me to walk my mum through to her room and we put my mum to bed.

I completed collating all the complaint information together and placed it all in an envelope ready for posting.

Then I had a nice hot bath. It was extremely relaxing.

Later we all went to bed. I woke up through the night feeling sick, however, I managed to fall back asleep.

 

1st December

I woke up at 6.45. I woke my children. I checked on my mum and she was fast asleep. There had been a heavy snow fall through the night and the school mini bus could still not make it up our hill to pick up my children for school, another day off school! I decided that my mum should stay off from the day care centre again, as the roads still looked awful and I did not want to take the risk of driving to the day care centre.

The carers arrived at 9am, how they managed to get up my hill is beyond me. What a risk they take to ensure a vulnerable person’s needs are met. I ‘take my hat off to them’. They do a great job. They washed my mum and then they dressed my mum and then they gave her breakfast. The carers left.

My friend left for work, I asked her to post my letter to the ombudsman.

I had an appointment with my doctor today, so that he could go over the results of my ultra sound. I took the car onto the road and began driving to the doctors, half way there I was wishing that I had cancelled my appointment, the roads were horrific and had not been ploughed. The doctor said that he had decided to refer me to an Orthopaedic doctor and that they would decided what to do with my shoulder. I left. I went to the shops and bought some food and milk and some cake, I needed some cake. I really felt like cake. I drove home, my car was skidding and struggling to go up my hill, however, I got there and I was glad to be home.

My son had stayed in with my mum, when I arrived home he was sitting with her in the living room giving her a cup of tea. I felt bad that he is always burdened with the task of looking after his granny. I wonder if he resents it or if he is happy to endure this task. I should ask him, however, I know he will say it is fine. He always does!

The children went sledging and I cleaned my house. I then went to into my attic and looked out my box of Christmas decorations. I checked to see what presents I had already bought for people and wrote down what I still needed to buy. Depressing and worrying, I really want everyone to have a lovely Christmas.

I made lunch for my mum and I. We ate lunch and then I washed the dishes. My children arrived back home. I made them a snack and a cup of hot chocolate.

Then I asked my daughter to help me walk my mum through to her room. We sat my mum on the commode.

The carer who helps me get my mum out of the car at 4pm sent me a message and asked me if I needed her to come today, I had forgot to message her again, I sent her a message saying that we did not need her. Maybe I should be tested for Alzhiemer’s.

I received a call from my mums keyworker, she asked me if I had cancelled the carers 4pm visits on a Wednesday, a Saturday and a Sunday. I said to her that I thought that I was not allocated visits on these days as my mum did not go to the day care centre on those days. It appears that I should be getting visits on these days, a bit of a mix up. My mums keyworker said that she would look into this and that she would get back to me as my mum should have been getting visits on these days at 4pm.

I began preparing dinner. The carers arrived just as I was putting our dinner out. The carers took my mum through to her room, they changed my mum into her pjs and then brought her through to the kitchen table. I had finished my dinner, I then began to feed my mum. I asked my children to wash the dishes.

My friend arrived from her work, she ate her dinner and then we sat chatting for a while. My friend helped me put my mum to bed. I watched tv for a short while and then I went to my bed.