Yesterday 19th September 2015

Headaches are still here and feeling sick aaaargh!

HOWEVER…….

So happy so happy – my sister is here – time for a break.

My sister comes to my house every fortnight and gives me a break from caring for my mum, which is brilliant. My sister completely takes over the carers role. I can get a long lie, I do not need to wake up to an alarm so that I am ready for the carer and even better I can make myself a coffee and lie in bed without having to worry about anything – a piece of heaven. Small pleasures mmmmmh!

I can now spend quality time with my children  or I can carry on with some of my botched up DIY jobs lol…. I am not very good at DIY but I do like to try. I am normally proud of my completed project whether or not it looks like a Frankenstein job or not.

Today I decided to spend some time with me and only me and I went for a long walk. It was great. Later I came home and chilled out with my family.

I went to bed at 10.30 pm as I was needing to set my alarm for 5.00 am (scary). My daughter has a Vaulting competition tomorrow and needs to be there early – which will be fun.

It’s 1am and I cannot sleep, I toss and turn and cannot get comfortable aaaaargh!  I shall suffer

Yesterday 18th September 2015

Today I woke up at 6.45 am, I had a headache. Lost is my motivation, bounce and optimism. I am fed-up. My usual morning chores are done without enthusiasm.

Children roused.

My morning check on my mum – she was awake so I got her a glass of water, raised her bed and gave her a drink, I put on her TV and then went to encourage my guys to get ready for school – they left at 8 am.

I started preparing my mums clothes, incontinence pads and creams, for the carer arriving at 9 am. Time for a ‘cuppa’ tea. It feels great to get ten minutes to relax after the children leave and before the carer comes –  this is new as previously the carer arrived as the children left – that was torture.

9 am the carer arrives, mum is showered and dressed. 9,45 am the carer leaves. I give my mum breakfast and a cup of tea, brushed her hair and brushed her teeth. 10.30 am the taxi lady arrives. I explain to her the circumstances surrounding my mum’s perceived arrears and the charge that my is now being asked to pay and explain that my mum will be unable to attend the day care centre from Monday next week as she cannot afford to pay the weekly charge for the transport.

Mum and the taxi driver have now left, time for me to get ready – I cannot be bothered – I have a cup of coffee. Now it is 11.45.

I contact the day care centre and explain my mum’s situation and tell them that from Monday my mum will not be able to attend the day care centre. The lady who works at the day care centre feels very annoyed about this and feels that it is extremely unfair to my mum and me. She said that everyone else gets transport to the day care centre for free and she cannot understand why its different for my mum. She further explains to me that my mum gets lots out of the day care centre and states that she gets involved in the activities, laughs and interacts with others. I explain to her that my mum is on the same benefits as every other person living in poverty and that the cost of buying disposable gloves, disposable aprons, new bedding, new clothes, fuel for heat and organic food etc… is high and that we simply cannot afford to pay the charge.

I also say that between my children and myself we could attempt to get my mum in my car but it would be a high risk to my mum and also extremely undignified for her, as she cannot follow instructions, therefore, you basically would have to try and bend her body, whilst turning her round, to get her seated in my car and if we done this it would have to be before 8 am as my children would need to leave at 8 am to get on their school bus and that was based on whether my mum was able to stand in a balanced way or not.

The lady from the day care centre said that she is at the day care centre at 8.30 am and that she would help me get my mum out when i arrived. What a lovely lady to offer to do that, because she would be putting herself at risk as well – although not overweight, there is a lot of pressure put on a person’s back when manouvering my mum in such away.

This is not an option.

How depressing, how unfair –  A person with Alzheimer’s benefits so much from interaction with others – I do not understand why this service is getting taken away from my mum.

When my mum was in a care home for a period of time I visited her on a daily basis, arriving in the morning and staying with her until the early evening. Each day I heard a lady consistently wailing. This lady appeared not to have visitors and there appeared to be very little interaction with her from the staff – I often wondered if the lack of interaction caused her to deteriorate in such a way.

“Right” I tell myself get a move on! I get changed and begin hand washing our clothes. It is now 12.30,

I have had no breakfast yet, its time for lunch and there is only 3 hours left until my mum and my children return home. I have four black bags of washing. Time passes fast.

I have lunch and I start washing it is now 1pm – two and a half hours until everyone comes home.

My phone ‘pings’, I have a message. I check. Excellent a meeting has been arranged with my local MP, an hours drive away and at the end of this month – GREAT – plenty of time for me to prepare but potentially lots of lost time for my mum at the day care centre. This makes me think about the negative impact that change has on a person with Alzheimer’s and how this will affect my mum.

Back to my washing, my head is still sore (frontal lobe – it must be stress)

……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………..time rolls on, my hands are sore, one bag done I can do no more.

3pm – half an hour until my mum gets home. I quickly brush the floors, make the beds and begin to chop vegetables for dinner. The taxi arrives, my mum is home. The taxi driver explains that the daycare centre tried to cancel my mums transport, but were unable to do it as the man they spoke to said that they could not just call up and cancel contracted transport. She asked me to contact the lady at the day care centre, which I did. I told her I would just have to turn the transport away when it arrived on Monday. I then attempted to contact the transport office, however, the man I needed to speak with was away for the day.

I give up – chill I tell myself, just chill – my head is still sore (I don’t normally get headaches)

It is 4 pm I watch my children coming along the road, one swinging his bag all over the place and the other, her head down, sulky looking and scuffing her shoes on stones, as she sauntered along the road – oh! no! I am thinking “have they had a tiff”.

4.10 pm – time to change my mum’s incontinence pad. Mum’s balance has not been great the last few days. I go to the shed as this is where i keep the stand aid, I bring the stand aid into the house to help me lift my mum from her wheelchair so that I can change her. Her trousers are wet through, I wash her change her and place her comfortably in her wheelchair. Now it is 4.40 pm.

My daughter helps me make dinner and now its time for tea. Double tasking, I feed myself at the same time as feeding my mum. I could do my mum later, however, I like my mum to sit with us and eat with us, it feels closer and gives my mum important interaction and normality.

My son and daughter do the dishes, feed the dog and feed the rabbits, whilst I continue to feed my mum. Jeeze! where has the time gone, its 6.30pm. The carer will be here soon to help me wash my mum and get her pjs on. I’ve still to help my children with their homework, I have still to clean the bath from when I was doing the washing and tonight is study time (time I spend with my son helping him study for his exams) (I call this torture time) (teenagers, study and parents don’t connect well lol…… I don t know who I feel more sorry for me or him).

Mum done – head down – study time – I am bushed – bed time.

I still have a sore head.

Yesterday, the 17th September 2015:

I woke up at 6.45 am I was feeling good, a fresh day, a new day, always the optimist. My washing machine has broken down and is not repairable, so I knew that I had a busy day ahead of me as this was the day that I had planned to hand wash all of our clothes – what a thought. But hey! ho! it needed to be done!

I woke the children for school and started the normal process of encouraging them to get ready, eat breakfast and do their normal morning hygiene processes – hard work to say the least.

It normally takes my mum at least half an hour to have a bowel movement and I wanted her to be on the commode at least half an hour before the carer came to help me shower and dress her. I asked my daughter to help me get her granny up out of bed and onto the commode.

At 8 am my son and daughter left for school. I continued to check on my mum. Eventually my mum had a bowel movement. I cleaned my mum and got the stand aid out of my shed, so that I could get my mum up and onto her wheelchair, this took ages and by 8.50 am I had my mum sitting comfortably on her wheelchair.

At 9 am the carer arrived to help me shower and dress my mum. By 9.45 am we had my mum washed, dressed and ready for breakfast. I prepared my mums breakfast and fed her, brushed her teeth and brushed her hair. It was now time for the taxi to arrive to collect my mum and take her to the day care centre she attends. We always have a quick chat before the taxi leaves. She’s a lovely lady.

The time is now 10.40 and my mum has left for the day care centre. whoopee! now I can get changed and washed and have my breakfast.

The washing begins !!!!!!!!!!!

The post arrives !!!!!@@@@!!!!!

Now I am feeling psychotic. I am furious. Why???? Because once again government cuts and overworked staff have ruined my day and made me feel stressed, anxious and annoyed.

For the last year my mum has went to a day care centre every week. Her day care centre days are Monday’s, Tuesday’s, Thursday’s and Friday’s. She gets picked up by a taxi at 10.30 and dropped off at 15.30.

When this service was offered to my mum, no-one and I mean no-one, said that there would be any charge for the service. My mum is wheelchair bound and is NOT ENTITLED TO A MOBILTY CAR AS YOU NEED TO BE UNDER PENSION AGE to apply for a mobility car. Because of this transport was organised to take my mum to and from the daycare centre. Again no-one mentioned that there would be a charge for this service. I was under the impression it was all covered by care in the community and because my mum had paid into the ‘system’ throughout her working life.

Nearly a year later (just last week actually) I received a call and I was told that my mum had arrears amounting to around £7,000 – can you believe the shock I got when I was told this. We had not received any notification of this mounting debt, no invoices, no calls. Actually, as I said before, we were not even told that there was any charge at all for any of these services. This was being looked into. I was asked to fill in a discretionary form, which I done, which included my reasons as to why I felt my mum/we should not have to pay these arrears – quite obvious I would say! I was told that the discretionary form would go to a discretionary panel that sits every month and that they would make a decision regarding whether we needed to pay these arrears or not.

Brilliant!!!!! So people who i do not know will look at all my families personal information and decide if we are entitled to pay for someone else’s mistake – how lucky are we??????

Rant over……..

Back to the postman – The postman delivered a letter today which stated that we had to pay around £600 a month, which incorporates my mums arrears and what they deem my mum can afford to pay towards her transport to the day care centre, which is  £56.59 a week. If we include her weekly lunch money for the day care centre she will have to pay £76.59 a week – WE CAN NOT AFFORD THIS.

I contacted the letter writer and explained this and said that we would need to cancel the transport. I contacted my mum’s keyworker and said the same.

I was told that because my mum had already used the transport service this week that she would still have to pay the full £56.59, therefore, she was as well going to the day care centre for the remainder of the week.

I contacted the local MP’s office to voice my complaints and concerns and the conversation went something like this:

Me: “hello I was wondering if you could help with a problem I have”

Telephonist: “can I ask what your name is and your address with your postal code

Me: gave these details.

Telephonist: “how can I help”

Me: I explained about the arrears and I explained about the weekly charge that we have been told we need to pay, voicing my concerns and complaints.

Telephonist: “well I do not think we could do anything at the moment I think you will need to wait until the discretionary hearing takes place”.

Me: “that’s fine, I agree, however, what about this charge which has come about due to Government cuts”.

Telephonist: “well was a financial assessment carried out”

Me: “yes”

Telephonist: “well they must have assessed that your mum could afford the charge”

Me “well she cannot, do you realise how expensive it is to buy the things that my mum needs”

Telephonist: “well do you receive carers allowance”

Me: “Yes”

Telephonist: “well there you go you get all the benefits you are entitled too”

Me: “we cannot afford these charges…….”

Telephonist: Interrupted me and said “well I can send out a letter….”

Me: I interrupted the telephonist and said “look just forget I called and do not bother sending  a letter out on my behalf I will deal with this in another way”

END OF CALL

So! what do I take from that. Is she saying that I have to use my carers allowance, which I get as a ‘sort of’ wage for looking after my mum, to pay for my mum’s transport?

Or! Does she ‘not’ understand what carers allowance is?

I AM BAFFLED

Later in the day I decided to contact the local MPs office again hoping that I would be able to arrange an appointment to meet with the local MP – this is in the process of being arranged, I am awaiting an email.

Failing to say I got hardly any of my washing done, this will have to be carried forward to another day.

and

Instead of spending quality time with my mum and children when they got home I spent my time ranting and raving in my head, keeping myself busy and feeling worried and worthless about our situation.

Hence the reason I felt psychotic.

The day in the life of someone caring for a person with Alzheimer’s.

A little bit about me. I am a single mum with two children, I have a dog called Barney, a hamster called Lilly and two rabbits Dora and Foxy. My mum lives with me on a fulltime basis, she has Alzheimer’s, which is at the advanced stages.

The advance stages of Alzheimer’s can include the following:

In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, personality changes may take place and individuals need extensive help with daily activities.

At this stage, individuals may:

• Require full-time, around-the-clock assistance with daily personal care
• Lose awareness of recent experiences as well as of their surroundings
• Require high levels of assistance with daily activities and personal care
• Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow
• Have increasing difficulty communicating
• Become vulnerable to infections, especially pneumonia(http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp)

My mum has all of these symptoms and requires extensive help with everything in her life.

I have cared for my mum for three years now and have had many of the experiences that I believe a lot of other carers have experienced.

It is a great pleasure to look after my mum, however, the stress and strain created by accessing services, dealing with discrimination, fighting for my mum’s rights and dignity is untold. This has made me want to share our experiences.

I believe that live coverage of the life of a carer will give people and politicians an ‘true’ insight into the life of a carer – wouldn’t it be good if policy makers and politicians underwent something similar to ‘Under Cover Boss’ and lived the ‘real’ life and experienced what we as carers experience on a day-to-day basis.

I feel quite confident in saying that they would not be able to cope financially, mentally and maintain a healthy environment for themselves and the person they cared for.