Yesterday 26th September 2015

I am wondering what people are thinking when they are reading my blog – my blog probably sounds mundane and boring, with the same thing happening day in and day out, a bit like groundhog day.

That is the life of a carer.

If you have a small child you can pick them up and put them in their car seat and take them out and do what ever you want, or need, to do. However, when you have an adult who cannot talk, who cannot walk and who cannot follow basic instructions, you cannot just pick them up and do what you want, or need to do. It would be great if my mum had a mobility car, as then I could take my mum anywhere. Our life would be more full and I would not have to rely so much on the help of other people.

Life is not simple…..

Without the tools to get up and go your life becomes centred around your home, you can, at times, feel isolated, abandoned and extremely lonely – lucky for me I have my children to entertain me and help me. I imagine that there are some carers that do not have the distraction of children – I am one of the lucky carers.

In order for me to do anything, even a simple thing like taking my children to the park, I need to organise for someone to take over my role as a carer, which can be difficult in a rural location. That person needs to feel confident in looking after someone like my mum. Your time out is limited as you need to be back to deal with continence issues. This makes your time out rushed and stressed and not relaxing and free.

Today is Saturday, my mum does not go to the day care today – a long lie – fantastic.

I awake to a cheery voice shouting HELLO! HELLO! I rush down the stairs with my hair all over the place and my eyes half-shut – I have slept in.

Jeeze! how I hate having to wake up and go right into functioning mode – I need, at the very least, 15 minutes to get into that mode – not a great start to my day.

I go back upstairs and quickly get changed. We do the usual stuff with my mum: commode, shower and change. Time for breakfast. the time is 10.15am

My daughter and myself have a horse riding lesson today, I wake my son and ask him to feed his granny and give her tea and toast. This will give my daughter and me time to get organised for horse riding. I am feeling really guilty as I do not like asking my children to help out so much – it is not fair on them.

In saying this, they are great and always help without a word of complaint, they are fab little guys, I owe them so much, I am also glad they are older now and can manage to help out in the way that they do.

I leave my son instructions regarding what he needs to do with his granny, whilst, myself and my daughter are out.

We leave.

During the horse riding lesson, my mind is constantly thinking about home and I wonder if everything is okay. I telephone to ask if everything is okay.”Yip”! “yip”! my son says “I am fine, granny is fine, we are watching TV”.

I am still thinking about home. I telephone to ask if everything is ok. “Yip”! “yip”! my son says “I am fine, granny is fine, we are watching TV”.

My mind is still thinking about home. I telephone to ask if everything is okay. My son is getting fed-up with my calls now. “Yip”! “yip”! my son says “I am fine, granny is fine, we are watching TV, can you bring me home a bottle of coke”.

I can rise and trot – whoopee! at last! It has taken me forever to learn that skill – I hope I remember how to do it for my next lesson.

We arrive home and I check the post – still no letter regarding the outcome of the discretionary panel – why is it taking so long????? How depressing and what a worry.

I check on my mum. Why do I worry so much?

I walk my mum and then I change her pad, I do not ask my daughter to help as I want to give her a break. I use the stand aid, this always takes longer.

I am thinking about all the things I still need to do and I am wondering if I will get it all done today, if I do, I will be able to chill out tomorrow. I need to get all the school clothes washed, dried and ironed, I need to clean, I need to make dinner, I need to walk my mum, I need to finish a DIY project that I started (a few months ago), I need to have a shower, I need to write this blog (why did I even start it??), I need to make up the fire in the livingroom and I promised my daughter I would bake some cakes. Too much to do, I do not get why I give myself so much to do in a day.

I put on a washing and hang out a washing, one that I had put on earlier in the day – so much washing. I am starting to get a smell from my mum’s room – I need to clean everything in her room with Dettox – I clean it – it smells much better. I wonder what I missed during my previous cleans that made her room smell, who knows!!!

Its lunch time. I feed myself whilst I feed my mum – boy! I am looking forward to when my sister next comes, so that I can just eat by myself – such small pleasures.

I clean the rest of the house and prepare our dinner. Mostly, when I clean, I take my mum with me from room to room, I try to chat with her and keep her involved. Sometimes I wonder if she gets fed-up with this, it is hard to judge. It would be great to be able to have a conversation with her.

I take in a washing, I hang out a washing and I put another washing on.

It is dinner time. I feed myself whilst I feed my mum. My mum is not opening her mouth properly so she is only getting small amounts of food, this will take a while.

My children do the dishes and I continue to feed my mum.

The carer arrives at 6pm and we wash my mum and put on her pj’s, she has still not finished her dinner – maybe she doesn’t like the taste.

I take in a washing and hang out a washing.

I clean out the fire and put on a fire.

I am bushed it is 8pm, I am too tried to do anything else. We watch a movie and now its time for bed, I walk my mum through to her bedroom and her room is still smelling nice. I shout my daughter to help me and we change my mums pad . I sit her in her wheelchair and put on her sling we put my mum to bed, she laughs.

It is 10.00pm I sleep like a log

Until….

My daughter wakes me up – I look at the clock its 3.54pm – She says that granny is chatting and has woke her up. I put my daughter back to bed and go and check on my mum. She is fine and is lying chit chatting to herself. I get a glass of water and give my mum a drink. I make sure my mum is settled and then I check on my daughter, she is sound asleep – I go back to bed and cannot quite get to sleep.

Yesterday 25th Sept 2015

I wake up at 6.45am, I watch the news until 7am and then I wake up my children. They get up quite quickly today, that Friday feeling I think……

Today is an exciting day – My mum is going back to the day care centre. I am hoping it all works out and that we can manage to get my mum into my car, without any hassles, or accidents. I am so happy that my mum’s keyworker went to the effort to sort all this out for this week, as I am sure it would have taken a good bit of time.

I check on my mum, she’s awake, so I raise her bed and put on her TV and give her a glass of water. She looks very uncomfortable when her bed is raised, her chin touches her chest and her body angle looks all wrong hmmmmmm!!! She cannot voice this, but you can just tell that it must be extremely annoying for her. I try to move my mum into a more comfortable position, my mum gets cross, did she just swear??? It is great to see that little bit of fire.

I check on my mum again, I decide to lower her bed – she looks too uncomfortable, I wonder if it is because of the hunch she has developed on her upper back. She is so much smaller in height because of it.

My children leave at 8am, I wish my son good luck for his Biology exam, I so hope he passes – he has studied hard for it, so have I.

I make the beds and clean the rooms and then I make a cup of tea, for me. I am thinking that I should go back to exercising in the morning, after my children leave for school and before the carer comes, as I tend not to have time at any other point in the day.

The carer arrives at 9am, we try maneuvering my mum into a sitting position, but she is extremely resistant and does not appear very mobile, we put the sling on my mum and get her up using the full body hoist, we put her on the commode and leave her for a while.

We take my mum through to the shower room, we shower her and wash her hair, we dry her and get her changed. She seems to have perked up a bit and has moved her body forward of her own accord. We walk her through to the kitchen, she manages well and we sit her in her wheelchair.

The carer gives my mum her breakfast and dry’s her hair, whilst she is doing this I get washed and changed into my outdoor clothes – I am feeling under a bit of pressure as I don’t want to hold the carer back from her other duties. it is 10am by the time I am ready, I brushed my mums teeth, put her poncho on and then we wheel her up to my car.

I m feeling very anxious about maneuvering my mum into my car. I am worried that she might not be balanced enough. I do not want this to fail because that would mean no day care for my mum.

We open the passenger side door and wheel my mum close to the door. We stand my mum up and turn her so that she is facing away from the passenger door. We gently walk her backwards so that she is close to the passenger seat. I run around the car and climb over the driver’s seat, I wrap my arms round my mum’s waist and gently pull her backwards. The carer keeps my mum balanced and pushes down on my mum’s head so that my mum does not bash her head on the roof of the car – she is now seated. I get out of the driver’s side and run around to the passenger’s side I lift my mum’s legs up and turn them, and her, into the car – this bit is hard because the space is tight and my mum is pressing her feet hard on the passenger side door, I have to pry them off one at a time whilst bending her knees up high and manoeuvering them into the passenger side. PHEW! job done – my back is sore – it is 10.25am and the carer is running late aaargh!

I put my mum’s seat belt on and drive her to the day care centre – she looks very uncomfortable because she is not sitting properly on the seat – poor mum. How gracious my mum is to silently accept such undignified treatment, I wonder what she thinks and feels.

When I arrive at the day care centre I need to do the same, in reverse motion, to get my mum out of the car. The manager of the day care centre helps me. It is so kind of them to do this – they do not have too. He said that he is delighted to have my mum back, and that they have all missed her.

I realise that I have accidentally trapped my mum’s safety belt under the seat of her wheelchair, we stand her up and I sort this out, we sit my mum back in. My mum is laughing, my mum is happy.

I go back home it is time to clean, wash, dry, iron and prepare dinner. The house is quiet.

It is strange – when my mum is at home, no matter what I am doing, I am always thinking about her and I always feel the need to check on her. A complete distraction when I am concentrating or doing a chore, I never get to finish things.

I have been studying now for 13 years, it has always been part-time and via distance learning courses. I initially began studying so that I could obtain a good job, I completed my studies through part-time distance learning so that I was at home for my children and so that they had a close and normal attachment to me.

I began a new degree a few years ago and I got in at advanced entry due to my previous educational attainment. So far I have managed to complete one year of this degree, it has been a slow process and I have had to defer my studies because of my circumstances.

I am hoping to restart my studies in January 2016, which will incorporate a six month placement. However, this is looking a bit tenuous now, as I received an email from my tutor which said that he has contacted my local council to ask if I could go on a student placement starting in January 2016 – and the council have rejected this, saying unfortunately they have not got availability for a placement due to service pressures – that’s strange and worrying.

I telephoned my tutor and left a message for him to call me back, I am wanting to ask if this has happened before.

it looks like my tutor will have to try further afield which will mean a longer journey for me on each day that I am on my placement. What a nightmare, I will need to work out the logistics. I am also wondering if the local council will fund a care package for covering my mum, like they done in January 2015 when I was on placement.

Its 3.10pm – I need to go now and collect my mum.

I arrive home at 3.50pm and the private care firm are not due to arrive until 4pm oh! dear! I leave my mum in the car and go into my house to make her a cup of tea. By the time I make the cup of tea the carer has arrived. We swing, tuck and bend my mum’s legs out of the car. I go round and climb in the driver’s seat and push my mums back up whilst the carer gently pulls her forward, I climb out the driver’s side and run around to the passenger’s side and we gently stand my mum up. I get the wheelchair out of the back of the care and we put my mum into the wheelchair. The carer helps me wheel my mum into my house.

I retrieve the stand aid from the shed and I change my mum’s pad, During this, my children arrive home. They are very happy – no school tomorrow, long lies, no studying.

We have dinner, do the dishes and sit in the livingroom to watch TV

The carer arrives at 6pm and we wash and change my mum into her pj’s

Tonight we sit and watch TV for a while – relaxing – its great.

My mum looks tired, My daughter and me walk her to her room and change her pad we put her to bed at 9pm

I watch a movie and then go to bed.

Yesterday 24th Sept 2015

This morning was much the same as any other morning – I awake at 6.45am, children are up at 7am, breakfast, bathroom routine and check on my mum – my mum is still in the land of Zzzz.

Both my children leave for school. The house is really quiet and I decide to have a cup of tea. mmmmh! Lovely – the most relaxing time of the day.

I check on my mum, she is still asleep. I tidy my children’s bedroom’s and make their beds – I am baffled as to how their rooms can get so messy so quickly – was I ever like this????? Probably!

The carer arrives at 9.00am we get my mum up and put her on the commode. I get the bathroom ready and my mum’s clothes and pad ready. We take my mum to the bathroom wash her and get her dressed, her balance is great today. Two days in a row, fantastic.

I walk my mum through to the kitchen and then we sit her in her wheelchair. It must be such a relief for my mum to be standing upright and moving her legs, instead of her usual, which is sitting or lying in the same position for hours on end.

I give my mum breakfast and then I brush her hair and I brush her teeth. It is now 10.50am

My turn now. It is now 11.30

I want to sort out my garden, there is weeding needing done, strimming and lawn mowing to do, so I take my mum’s wheelchair outside and sit her in the garden. Fresh air – ah! heaven! My mum is all wrapped up and she’s laughing, her cheeks are all rosey – it is lovely to see.

12.30pm – It is time for lunch we have a sandwich and a cup of tea.

I receive a call from my mum’s keyworker and everything is organised for tomorrow.

In the morning, the carer who helps me shower my mum will also help me get my mum into my car. A private care firm will meet me at my house at 4pm and they will help me get my mum out the car.  I am delighted, at last my mum will be returning to the day care centre. Good news! Great news! I am happy. I bet my mum has missed the day care centre and I bet she will be delighted to be returning – I wish she could have a conversation with me, then I could ask her.

My mum looks tired so I take her through to the livingroom and put her in her chair. Getting my mum out of the wheelchair without the stand aid can be a nightmare and sore on my back but I like my mum to walk a few times a day, to stretch her legs and to help keep her mobile. Most of the time my mum doesn’t walk and you have to gently pull her into a walking motion, she seems to enjoy being upright for short periods of time. I walk her over to her chair and then sit her in her chair. I leave my mum for a while and go back to my garden work.

I am eager for the postman to come as I have still not heard anything regarding the discretionary panel outcome and I am desperately wanting to know their decision. The postman comes – still no news. Jing’s! I wish they would hurry up. I know they have to go through procedures but this is torture. It is a lot of money to be hanging over your head.

It is all quiet today no phone calls and no need to make phone calls – total bliss, I wish every day was like this.

I check my emails oh! dear! I ve spoken to soon – an email regarding my mum. It’s just confirmation of the arrangements for tomorrow for the carers to get my mum in and out of my car phew! No hassles.

Another email comes through asking for me to give my mum her breakfast before the carer arrives so that the carer can leave at 10.00am. I think about how I can fit this in and do not think it will be possible as I need to make sure my children have time with me before they leave for school and I also need to consider the impact on my mum if I wake her up earlier. I know that on some nights my mum is awake through the night and I feel that it would be unfair to her to wake her up earlier. I keep trying to keep my mum at the centre and my children at the centre of all I do – it can be difficult. I just bob about and shout hey! someone! let me be at the centre, sometimes, too. lol…… as if…. responsiblity takes that away. Sometimes I think It would be nice to have a partner then maybe i could sometimes be at the centre hmmmmmm!!!!

Its 4pm, my children are home. I have not prepared dinner as I have been too busy in the garden. Time to start. I am not hungry so I cook dinner for my children, chicken nuggets and chips and I give my mum some homemade soup.

We have a bit of time left before the carer comes, so I ask my daughter to help me get my mum on the commode. We leave my mum there for 20 minutes, brilliant she has had a bowel movement. Through experience I have found that my mum needs about 20-30 minutes on the commode, it seems to get things moving.

The carer arrives and we get my mum changed into her pj’s. We walk her through to the livingroom. I ask my daughter to give my mum a cup of tea.

Study time, aaargh! my son has a biology test tomorrow. After 4 hours of sheer torture we finish studying – I am exhausted, my son is grumpy, my daughter looks bewildered and my looks like she could be doing with bed.

My daughter helps me get my mum up and we walk her through to her room. We put her in her wheel chair and start the process of getting the hoist on her and then we hoist her into bed. She laughs, then smiles – she’s happy.

I have recorded my son during our study session, I hit the play button and all you hear is my son whingeing and complaining and saying I don’t need to know this, I ve learnt this, why do I have to do this, I m not sitting here, I m not doing this. He smiles and says why did you record me and I say if you act like that again I am going to post it on facebook so that all your friends can hear it. He laughs and says you better not – my new blackmail tool. Whoop! whoop!

Bedtime.

Yesterday 23rd Sept 2015

The day starts – I wake up at 6.45am, I wake the children and oh! boy! they look grumpy. I wonder if I look that grumpy in the morning (probably). Oh! dear! I better get them motivated.

I check on my mum, she is still asleep so I leave her as she is.

I check that my children have packed their bags, brushed their teeth, washed their faces and have their money. I pick up all the stuff they have discarded on the floor and make their beds. My daughter asked me to straighten her hair, I love playing with my daughters hair (I do not tell her this, if I told her she would have my playing with her hair all the time). I have no time!!!!!

It is time for my children to leave, they grab a kiss and saunter out the door. I check on my mum, she is still asleep – she must have had a late night.

The carer arrives at 9.00am, we go through to my mum’s room and she is still asleep. We gently rouse her and she looks at us through half opened eyes – and then she smiles, which turns into a little laugh – so sweet, lovely little lady.

We try sitting my mum up, she manages, and altough she is slighty slouched she appears to be quite balanced. This is great because we might be able to stand her up and walk her to the commode –  exercise for a little lady who does not get a lot of exercise. The longer we can keep her mobile the better it will be for her. I am dreading the day my mum becomes bed bound – that will be a sad sad day.

We get my mum onto the commode and leave her for ten minutes – she has a bowel movement – this is great – at least she will not have a bowel movement in her pad. I can only imagine that this would be a really horrible feeling.

There is lots of ‘greats’ today lets hope it stay’s that way.

We shower my mum and we wash her hair.

After I had dried my mum’s hair I gave my mum her breakfast, I brushed her hair and I brushed her teeth. It is really awkward to brush my mum’s teeth as she bites the toothbrush and then you need to wait for her to let go, sometimes this takes a while. I think she forgets that you are brushing her teeth, because once you begin again she opens her mouth as though you are giving her food and then when she gets the taste of the toothpaste she clamps her teeth down on the toothbrush again and then u you need to start again.

It is 10.40am

Breakfast for me and then I get ready.

I decide that I should tidy my room as it is getting a bit messy. Mum is watching TV. When I say watching TV I mean she is sitting facing the TV, I don’t know if she is actually taking any of it in or not – it is hard to say!

It is now 11.50am. I feel that I have got quite a bit done today, so far!

I telephone the Equality Advice Service and ask them for information with regards to The Human Rights (Act). I am interested in finding out if it would be reasonable and/or possible to legally pursue a care home group if an older person sustained substantial bruising within one of their care homes.

My interest in this comes from a time, around 3 years ago, when my mum stayed in a care home for 7 days, this was so that I could have some respite. When I collected her and brought her home I noticed that she was wet and needed to be changed. As I started taking her clothes off I also started to notice bruising on her body. I was devastated, around 28 bruises covered her body, some substantial and some small.

I cannot talk about this now, maybe later, I feel too angry about it and I need to be in the right frame of mind to discuss it. I am feeling angry now even though I am just touching the surface of what happened.

Anyway! back to the Equality Advice Service and The Human Rights (Act).

My sister and I decided to take civil action against the care home group, however, 3 years down the line we were told by my mum’s lawyer that he would not be able to pursue the civil case any further, he said that in order to obtain legal aid you would need to be able to prove that you would win substantial compensation.

We were told that because my mum’s Alzheimer’s had worsened, to the extent that she would not be able to stand up in court and give evidence, that he felt that he would not be able to prove to the legal aid board that he could obtain substantial compensation.

This brings into mind MY MUM’S RIGHTS TO EQUALITY and MY MUM’S RIGHTS TO BE TREATED HUMANELY AND WITH DIGNITY AND RESPECT – it also brings into mind A BIG BLACK HOLE – whereby, people who want to abuse the vulnerable are able to, as no-one can prosecute them. So frustated.

The Equality Advice Service mentioned Article 3 of The Humans Right (Act) which is as follows:

The prohibition on torture and inhuman or degrading treatment or punishment, which is one of the most important provisions within the Human Rights Act

Prohibition on torture and inhuman and degrading treatment or punishment

The most obvious obligation prevents State officials from torturing a person or subjecting them to inhuman or degrading treatment.  This applies anywhere the UK exercises jurisdiction, which can include places outside the UK, as well as in UK prisons, hospitals, schools etc.  Government policies that put a person in a situation where they face inhuman or degrading treatment may also breach Article 3.

Torture evidence

UK courts and tribunals must not admit evidence obtained through torture, even when the torture was not committed by UK authorities.

Deportation to torture

The absolute prohibition on torture and ill-treatment also applies to prohibit the UK from deporting a person to another country when substantial grounds have been shown that he or she would face a real risk of being tortured or subjected to ill-treatment in that country.

Investigations and prevention

Like the right to life, the prohibition in Article 3 requires an official and effective investigation to take place where there are credible allegations of serious ill-treatment by public officials.

Article 3 also requires that public authorities take steps to prevent torture and ill-treatment. This requires laws in place to adequately protect vulnerable groups from ill-treatment and for public officials to act to protect vulnerable people from harm inflicted on them by others.
(https://www.liberty-human-rights.org.uk/human-rights/what-are-human-rights/human-rights-act/article-3-no-torture-inhuman-or-degrading).

Based on this and also the way I believe that my mum was treated, I contacted various human rights lawyers, to ask if any of them would consider taking on this case.

I am keeping my fingers crossed that we can move forward with this and not just for what happened to my mum, but for all the other vulnerable people out there who could quite easily end up in the situation my mum was in.

I received a call from Alzheimer’s Scotland, this was regarding a call I had made to them a few days ago. Alzheimer Scotland are a great group and give you solid advice when you need it. Throughout the time that my mum has lived with me I have contacted them on numerous occassions and I have always came off the phone with the feeling that I have a better understanding of some issue or other.

I prepared dinner – stewed sausage – even better than beef curry I would say especially when it is cooked in a slow cooker.

My mum’s keyworker called saying that she is hoping to organise a carer to come and help me get my mum into the car in the morning and in the evening so that I can take my mum to her day care centre and also bring her home from the day care centre. She explained that she would probably not be able to organise this for Thursday but possibly for Friday.

It makes me sad that so many people put in so much effort to make things positive for people like my mum and I and then Government cuts take away all that effort and leave you struggling and fighting for basic things such as inclusion, dignity, respect and normality.

Lunch – it is 1pm – the time has run away, too much chatting on the phone.

I change my mum and I walk my mum – she is still a bit wobbly when she is walking – I wish she would stop trying to sit, because then we get into a bit of an awkward position and I worry that we will fall over, it also puts an awful strain on my back – but its worth it.

I contact Inclusion Scotland and ask if they would be interested in putting my link for this blog on their website, they appear interested and asked me to email my link.

I carry on with my mountain of washing, drying and now ironing of clothes.

4pm and the children are home

Dinner time – jeeze! its good.

The carer arrives at 6.00pm and we wash and change my mum into her PJs.

I give my mum a cup of tea and a of piece cake, she loves her food especially cake.

It is study night with my son –  he has a biology test coming up – I forgot to say he passed his maths test, he is delighted, I am delighted we are all delighted.

I help my daughter with her school project.

I walk my mum to her room, change my mum and put my mum in her wheel chair, I put the hoist on her and put her to bed its 9.30.

My children go to bed. I have a cup of tea and watch TV for half an hour – I go to bed. It would just be good, sometimes, to sit on my bum for an hour or two during the day and not have to think about anything. Maybe one day!!!

Yesterday 22nd Sept 2015

6.45am time to get up.

7.00am I wake the children

7.15am I wake the children

7.20am I wake the children. Awe! Jeeze! I wish they would get up.

I start getting breakfast ready. Gradually both my children materialize. At last, I think.

Whilst my guys are having breakfast I make their beds and pick up all the discarded items strewn across their rooms.

My mum’s taxi driver phones me and asks if my mum will be going to the day care centre. I reply, “no”, explaining that I have not heard from anyone regarding what the outcome was for the arrears and the charges for the transport to the daycare centre.

I checked my e-mails and noticed that I had an e-mail from the financial assessment team. The e-mail  said that they did not know what the outcome of the discretionary panel was – “how depressing is that”?. It is really frustrating that we need to wait such a long time for this information, especially given that it was someone elses mistake and that we should have been notified of these charges immediately, not a year down the line.

Feeling fed-up now……… I was really hoping to have this matter resolved so that I would not have to keep thinking about it and so that we could get my mum back to the day care centre.

My children leave for school at 8am. I have a coffee and catch up with the morning news. I then check on my mum, she is awake, I raise her bed up, put the TV on and give her a drink of water (water in the morning is meant to help with her blood pressure).

Whilst I wait for my mum’s carer I prepare dinner (for the slow cooker), nothing like a beef curry to wash away my feelings of being fed-up, something to look forward too.

I then begin to get my mum’s clothes ready and also preparing the bathroom for my mum’s shower. The carer arrives at 9am, we put my mum on the commode and wait for ten minutes. We shower my mum and wash her hair, dress her and then ‘stupidly’ i decide to take her through to the livingroom to sit her on the sofa. It is now 9.45am.

I make my mum’s breakfast and feed her. I then make her some tea and toast. It’s now 10.50am.

Time for me to get ready.

I had to borrow some money to put towards the purchase of a washing machine, it has arrived, I m well delighted – hell – nothing like getting a working washing machine to catch up with the washing, this will definitely wash away the feelings of being fed-up – I must be getting old.

After spending an hour connecting the washing machine, I start the washing – whoop! whoop! – time to get rid of the mountain of washing. No more sore hands for me – happy days.

It is now 12 noon, I prepare lunch for my mum and I. After lunch I realise that I have a problem. My mum is sitting on the sofa I cannot walk her or change her, as there is no way I can stand her up. The stand aid and/or hoist will not fit round or under the sofa – I’m feeling a bit stupid now and feel really bad for my mum. She will desperately need changed by the time the children come home and help me stand her up. – what a clown I am. I could not even contact a neighbour as I stay in a rural location and there is no-one around to help.

I decided to call my mum’s keyworker to ask about the possibility of applying for funding, so that I can adapt my car. I also ask her about the possibility of a carer coming to help me get my mum into my car and then I could take my mum to the day care centre. My mum’s keyworker said that she would look into these options and that she would get back to me.

I began to think about costs and how it makesno sense at all – They are asking for my mum to pay £56.90 for her transport to the day care centre – we cannot afford this – so my mum cannot go to the daycare centre using this option.

Yet

If carers are put in place to help me get my mum into my car at my home and then put in place to help get her out of the car at the day care centre, with the same thing happening on the return journey, then surely, this will cost more than a £56.90 transport charge.

NO SENSE AT ALL – I CANNOT WORK IT OUT.

Trying to bend my mum and swing her round to get her into my car is going to be really undignified for her and risky for her and me – it does not make any sense that we may have to transport my mum in this way, especially given that the cost will be higher than the £56.90 transport charge.

Who knows how it all works.

I decided to clean the house and brush and mop the floors – I’m baffled at the amount of dog hairs i sweep up everyday. I will need to brush the dog and see if that makes a difference to the amount of hairs that he casts.

I make my mum a cup of tea and give her a biscuit with it. Mum’s tired today. I wish she was at the day care centre, there would be so much more for her to do.

4.00pm the children came home. Brilliant I can get mum up and change her pad and I can help her have a wee walk around the house. My daughter helps me to get my mum changed and then I begin the job of walking her. Mum’s walking was awful, she kept trying to sit down and I kept having to call my daughter to help me balance her. Maybe she had been sitting too long – probably – I ll not make that mistake again

At 5.20pm I receive a call from the man from the carers charity. This was regarding the car adaption, he has managed to obtain a quote for the adjustment and said that we are looking at paying £2500. He said he will try to find a way to fund this.

What a lot of money, you could get a new (well used) car for that. DEPRESSING OR WHAT.

I finish off the dinner, we ate at 6.00pm. The carer arrives half way through my mum’s dinner, which is fine, as I had perviously asked for the carers to at this time. There is nothing worse than having to get up, full of go, at 9pm, to change my mum and put her to bed, usually by this time I am ready for bed. We get my mum ready and then I finish giving my mum her diner.

Looking back – when my mum first came to stay with me I had asked for, early visits in the morning and as late as possible in the evening. However, it is only when you have someone like my mum living with you that you realise what the best times are for you and your family – it is not easy to get things right first time round, especially when you have young teenagers running around.

The carers are great they accommodate you as much as they can.

I helped my daughter with her homework, whilst chasing my son into a shower – not an easy job.

I have a bath – relaxing – peace and quiet – heaven.

It’s now 8.45

I asked my daughter to help me walk my mum through to her room, we changed her pad and then we sat her in her wheelchair, we put the hoist on her and put her into bed. Its 9.40. My mum always laughs when we put her to bed and I always wonder if it is a relief for her to lie down, it is almost as though she looks forward to getting into bed – So much so, it makes her laugh.

My son and daughter decide to play a game of cards (21’s). At 10pm we all go to bed – I am floored!!!!

Yesterday 21st September 2015

That’s me, I have had my two days off a fortnight, so back to work I go.

I slept in today, so the children were late for school – oh! dear! It was all rush rush in my house, this morning I had to multi task ten times over getting my mum ready and pushing my children along.

My children missed their morning bus, which meant that I had to drive them to school. I couldn’t do this until my friend arrived at 10am because I could not leave my mum alone in the house. This meant they missed two lessons rather than half a lesson – I bet they were delighted – I was not.

I felt rather anxious today as this was the day that I ‘might’ or ‘might not’ hear from the financial assessment team, regarding my mum’s arrears for transport and also whether or not she has to pay the full £56.90 towards her future transport costs.

My mum’s taxi driver phoned to ask if he should come and collect my mum, I explained the circumstances and said “no”. He asked about tomorrow (the 22nd of Sept) and I explained that I might hear from the financial assessment team later in the day, therefore, I might be able to let him know later. He said that if I did not call him later he would call me in the morning before he leaves to collect my mum.

My friend arrived at 10am to cover me so that I could take my car to the garage for its MOT (praying that it passes), with the addition of dropping my children at school.

CAR PASSED – PHEW!!!!!!    Happy days.

I waited for ages whilst my car went through its MOT and I was feeling restless and anxious. I felt guilty that I was holding my friend back from dealing with her own stuff – not that she was complaining or anything – it’s just me – an awful worrier and not wanting to take advantage of anyone.

I arrived back home at 12pm

It’s now time for my mum’s lunch. My sister had made homemade soup, which was great, as it saved me cooking. I feed my mum and simultaneously feed myself –  this saves time. The time is now 1pm.

It is now time to change my mum’s incontinence pad, I bring in the stand aid and get on with the job, it’s now 1.45pm, then I put my mum in her wheelchair. Mum is looking good today, full of beans and smiley, its lovely to see her like this.

Still no call from the financial assessment team 😦

Time to clean and prepare dinner.

Its 3.45pm still no call 😦 I am wondering if I will get a call and I am not feeling optimistic.

As I was going about my daily chores I was thinking about the time that I have spent with my mum that day. I have only really spent time with my mum when I have needed to do something for her such as feeding or changing her and I am thinking about the things she would have been doing if she was in the day care centre such as singing, exercising and all the other fantastic activities that they do. FEELING IRRITATED NOW, poor mum.

I started thinking about ways in which I could cut down, to save money, to pay for mums transport – this is difficult because no matter what way I work it someone will lose out on essentials, especially given that I am on a low-income.

Being  a full-time carer for my mum means I work 24/7 which equates to 672 hours a month. Because my sister comes to my home every second week to take over my role and give me respite the amount of hours I work is reduced to 624 hours a month.

Carers Allowance, which is my wage for looking after my mum is around £248.40 every 4 weeks, making my hourly rate a whooping £0.39p – ain’t I lucky.

Thinking back to a pervious blog; the one were the lady at my local MP’s office highlighted my carers allowance when I was complaining about the £56.90 charge for my mum’s transport, which at the time indicated to me, that she felt I should use this to pay for my mum’s taxi – astronomical.

If I used my carer’s allowance to pay for my mum’s taxi I would then get 0.03p an hour for my role as a carer – I CAN ONLY LAUGH IN AMAZEMENT AT SOME PEOPLE’S THOUGHT PROCESS and I can assume that there are very few people in Scotland who work for 0.03p an hour.

IS THAT EVEN LEGAL?????
I wonder what the minimum wage in Scotland is?
Is my job an actual job?

RANT OVER

I decided to have a look at Government policies etc….. to see what my mum’s rights are and came across the following information:

Scotland’s National Dementia Strategy (http://www.gov.scot/Resource/Doc/324377/0104420.pdf)

Highlights the following:

This strategy adopts the principles set out in the Charter. In summary, these are that people with dementia and their carers have the right to: Participation, including rights to accessible information and support to participate in decisions that affect them; to live as independently as possible with access to community facilities; to full participation in planning care; and to be assisted to be involved in policy-making. Accountability, including rights to enjoy human rights and fundamental freedoms including full respect for their dignity, beliefs, individual circumstances and privacy; and to the accountability of organisations and individuals responsible for care and treatment for the respect, protection and fulfilment of their human rights.

If this is the case why is my mum’s right to participate in her community being taken away from her.

This strategy also acknowledges the following “support for those who care for people with dementia is often overlooked, so that their health suffers with the stress of caring“.

So what about me? Why am I having to go through the stress and anxiety of dealing with service cutbacks and unrealistic demands of payment for services for my mum and so forth.

I decided to contact a local carers support charity to see if they could organise funding which would allow me to get my car adapted – this way I could take my mum into the day care centre myself.

They said they would look into this for me. FINGERS ARE CROSSED.

I find it ridiculous that once you reach pensioner age you cannot apply for a mobility car – is this not a form of agism – I ask myself! If my mum had a mobility car I could whisk her into the day care centre myself. IF I AM WRONG ABOUT THIS SOMEONE CORRECT ME – MAYBE I HAVE MISREAD.

It’s now after 5pm and I have had no call from the financial assessment team, therefore, I will need to wait until tomorrow for any news on my mum’s arrears and the £56.90 charge towards her transport costs 😦

Tonight is one of the nights that I spend helping my son study for his up and coming exams. After dinner I sit with him and go over past papers. I am very aware that my mum has not had a lot of my attention, I feel very guilty. It’s very unfair. I wish there were two of me, one for mum and one for my children – how much easier life would be.

The carer arrived and together we washed and changed my mum into her pjs. Mum was tired looking but still giggling, which was good. We walked my mum through to the livingroom and sat her in her chair.

Now back to studying.

Aaaaaaargh! let the fun commence. After 3 hours of “I don’t need to learn this”, and “I don’t need to learn that”, he learned this and that. Phew! I was glad when that was over lol… I bet my son was too.

It’s now after 9pm and time for my mum’s bed. I asked my daughter to help me stand my mum up, which she did, and then we walked my mum through to her room, which can take about ten minutes, but is great for keeping my mum mobile.

My daughter held my mums hands to prevent her from falling and I changed my mums pad, we sat my mum in her wheelchair and then put the full body hoist over her to hoist her into bed. It’s now 9.45pm

I think then – time to chill – a cup of tea

Yesterday 20th September 2015

I awake at 5am to the sound of my alarm. Jeeze! what a struggle I have only had about 2 hours sleep. Now it is 5.10am I need to get moving as we need to leave for 5.30am.

I am taking my daughter to a vaulting competition today, she is really exited and so am I, it will be fun.

My daughter in action.

So proud of this little lady.

When we arrived home my sister had gone and my friend had taken over the caring duties. After I dropped my friend at her house and thanked her for helping out, I went home and I gave my mum a cup of tea, she looked exhausted. I wondered if I had woken her up in the morning when my daughter and myself were getting ready to leave for the vaulting competition – I hope not. I was extremely tired too and I was struggling to keep my eyes open, it had been a long and rewarding day.

I brushed my mum’s teeth and then mine – bedtime. Then I remembered that I had booked my car in for an MOT and I had not organised anyone to look after my mum. Mum should have been at day care, however, this had been cancelled due to my mum now having to pay towards the transport costs. AAAAAARGH! I sent another friend a message and asked for help.

Bedtime – I slept like a baby.

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.