4th November – 10th November

Day 53 – Day 59

4th November

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  I am amazed at how lucid my mum can be at times and then at other times (most of the time) she is quiet and withdrawn and unresponsive, I wondered if, at times, my mum’s brain begins some kind of healing process and then falls apart again.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

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

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

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

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

What a joke!

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

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

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

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

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

I made lunch, it was now 2pm.

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

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

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

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

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

5th November

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

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

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

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

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

I cleaned the house and then I prepared dinner.

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

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

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

We ate dinner and then I washed the dishes.

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

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

We all went to bed.

6th November

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

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

The carer arrived at 9am.

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

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

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

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

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

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

I cooked dinner. We ate dinner.

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

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

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

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

7th November

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

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

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

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

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

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

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

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

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

I went to bed.

8th November

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

The carers left.

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

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

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

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

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

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

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

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

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

9th November

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I slept.

10th November

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

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

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

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

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

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

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

I clean the house.

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

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

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

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

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

I had a bath and then I went to bed.