Day 60 – Day 67

11th November – 17th November

11th November

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

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

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

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

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

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

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

I began to clean my house.

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

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

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

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

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

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

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

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

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

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

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

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

12th November

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

I drove home.

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

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

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

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

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

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

Bed time for us all.

13th November

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

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

I took my dog for a walk.

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

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

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

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

My sister arrived.

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

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

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

14th November

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

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

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

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

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

I went to bed and fell asleep quite quickly.

15th November

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

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

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

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

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

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

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

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

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

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

16th November

What a panic today. What a rush. I woke up at 6.15am. I woke my children. I prepared my mums clothes and then I checked on my children. My son was getting ready and my daughter was fast asleep. I woke her again. I then got ready for the day. I asked my son to help me get my mum out of bed. We sat her in her wheelchair. I took off her pyjama top and put on her vest and a jumper. I took off her pyjama bottoms and slipped on her socks, trouser and shoes. I asked my daughter to help me change my mums pad and we finished getting her ready for the day.

My children ate their breakfast whilst I feed my mum her breakfast. Its 8am and time to leave.  We wheeled my mum up to my car and then we put my mum into the car. I decided to put my mum into the back seat so that I could chat to my son about the work placement he was going to. What a nightmare, the space between the door and the backseat was even tighter than the front seat. I had to pull my mum right back so that she was practically lying on the seat, my children then moved her feet and legs round. Then I sat my mum upright and fastened her seat belt – I am puffed out. My mum is quiet.

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

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

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

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

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

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

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

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

Bedtime, sleep time – I cannot wait…..

17th November

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

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

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

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

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

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

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

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

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

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

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

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

 

I made my mum and myself a cup of tea.

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

Bedtime… I feel asleep.