Writing a children’s book

Yes I might just write a children’s book, the other night I was just up on my own watching TV and I started to think about our journey with Alzheimers and how it was confusing for the adults. It got me thinking of how confusing it must have been for the smaller children in the family. So I am going to try write a book to sort of explain what I believe a child may have been thinking. As you may know I am not very fluent in my writing but I have the ideas and the skeleton of what I wish it to be. I just need to decide how to place it into a book format. Hey it’s all good therapy, it allows me to think about my dad (Grumpy) and it allows me to place some of my thoughts in a child like way as sometimes it is confusing and scary.

So Grumpy I hope will appear in a book one day and also my Mum or to the great grandchildren grandma scarecrow.

Happy to hear from people who have succeeded in this endeavour before and let me know how to write a children’s book.

That it all I was sharing today. Have a fabulous Sunday

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Grumpy’s Donation to Science (and cremation)

If you have read my blog or visited my attention to care group on facebook then you will have heard me talk about Grumpy (my Dad). Grumpy died from Alzheimer’s 3rd April 2019 it was a short journey for us from diagnosis to Grumpy dying. Grumpy and my mother had both made arrangements to have their bodies donated to science rather then a large funeral. They had both signed up for donation and we were all informed of this by them both. I was sceptical I have to admit, I wasn’t sure how I felt about it but now I can tell you I could not be prouder or more amazed at the process.

Mum and I spent the 4th APRIL phoning to see if the local body repository could take dad, do remember it’s not as easy as signing a bit of paper.  Once the person has died you need to check which university hospital has room (you are normally signed up to your local one)  or check if the have restrictions (because some will not take people of a certain size or if the died of an infectious disease). Mum called all around the country and eventually Nottingham university hospital (The National Repository Centre, based at City Hospital) agreed to take Grumpy. They organised the transport (there was a cost for us) and then took him on his journey to help within medical research. We had been informed that he could be with them for 2 years and so we were prepared for the wait but we had been reassured that we would be invited to a cremation ceremony.

We decided to do a little get together for family and friends to remember Grumpy which was lovely. However, I think there was still an element of a feeling things have not been completed and I suppose there was an element of when may they call to say they are doing the cremation ceremony. Not that I am saying this is a bad thing but I think you have to be prepared to feel that regarding a loved one and not to hide that feeling (which I believe we did).

After having Grumpy for 5 months mum got the call to say they are ready to have the ceremony and invited us to attend (people had mentioned it would not be personal or that there would be more then one family in the same ceremony). Sadly not everyone could attend but some of us could and I am very grateful that I was able to be there. We had the cremation on 3rd September 2019 at 9:30 at Gedling Crematorium it was the most beautiful setting. 69939097_563219157755524_8512856593509908480_n

We arrived as Grumpy was been taken in and we were able to give the sunflowers and roses we had prepared with all our names on to be with him and my sister Joanna wrote him a note which the lovely funeral director placed on the coffin. It was very emotional but I can honestly say it was so personal, kind, thought provoking and comforting service I have ever been to. There was not an overly formal feeling Bernard the funeral director informed us that him and his team have  been the ones driving Grumpy around to each of the hospitals. He reminded us of what a help grumpy will have been to mankind for selflessly allowing scientific research and young doctors learn from his death. We were able to choose the songs that played as we walked in and while we sat in the room and as we walked out. We were allowed time to go to the coffin and place our hands and say both hello and some of us said our goodbyes. Bernard did a beautiful ceremony and I was able to get up and do a speech about Grumpy. I have to say Nottinghamshire funeral services did us proud. I can not thank them

It was honestly beautiful and I will now be looking into this process myself. I am thankful that we have been lucky enough to have this moment and even though we still have one final trip with Grumpy to the Angel of The North it was a much needed time.

The point to this blog is to just say have a look at donating if you want, I have checked out the site and there is so much that they tell you so you know what will happen. I am so proud for what this service has done and as a family we thank you. We are grateful for what Grumpy stands for.

As I said the other day ‘grumpy was a giant of a man’ he was our grumpy and we will miss him’. We know he is waiting somewhere and we know he is telling us ‘before you come here you must have squeezed every ounce of laughter and joy from your life’.

We will aim to do just that. 69556012_679307149235639_869669833069821952_n

 

Life of a trainer

It’s a trainers life for me

Instilling knowledge for a fee

Smiling and passionate

Positive and spirited

Frustrated and concerned

Worried and perturbed

Its a trainers life for me

Not perfect or done with perfection

But there to teach and engage

There to smile and show passion

There to nurture potential and share

Its a trainers life for me

To live in realities and know the barriers

To be honest, open and transparent

To take off the rose coloured glasses

To let the carers know I have been there

I know the life and have lived the life

The need to adapt and change some minds

The aim remind carers to be kind

To ensure the most vulnerable people get what care they need

It’s a trainers life for me

Sharing, caring and valuing

Reminded that carers should be valued and respected

That carers need to understand there will be the unexpected

The shift of a day

The shout of a voice

The scream in pain

The upset of fear

The unpredictable events

The journey they will be part of will not be a straight road

The road will have twists and turns

Some harder then others and some tricky with an up hill incline

The everyday tasks to the most poignant

of moments

The tears of success the tears of loss

Its a trainers life for me

Reminding you carers you don’t just wash and wipe a body

You comfort, care, enable and listen

You wipe away tears and encourage belly laughs

You are not just encouraging existence, you are enabling living

Carers you make me do the job I do and I choose the trainer life for me.

What gets people to read?

What gets people to read is my question today?

I am thinking of what makes me read something and I am struggling to know what. Here are some of what gets me to read:

  • the intrigue that gets me looking further, the expectation that it’s going to be a SURPRISE!
  • the title that gives me a question to be answered and only can be answered if I continue to read.
  • the expectation of what something is going teach me
  • the fear if I don’t read I will miss out on something that can help me
  • the assumption that I know what something is going to include so I make an informed choice
  • the lack of understanding of a title so it’s a MUST read to see if it’s really what it says on the tin (title)
  • I also like a title that may hold a conspiracy theory
  • lastly I choose if I think I may have an opinion of the topic, if it’s near to my passion.

These are some of the reasons I read certain things and not others. What are your reasons you read articles, posts, tweets or books?

 

Dad (AKA grumpy) Our families Dementia journey part 2, 3 and maybe 4

Mish Mash of information and most likely not in chronological order. Please bare with me while I try to remember the sequence of events that came once we had diagnosis.

Bloody this diary malarkey (great word) is rather hard I can now see why I never had one, you really have to keep up with it or you end up like me wanting to tell you the journey but getting lost in the events. I have deleted this post a few times.

Recap: doctors visit with mum, first lot of tests completed, referred to ‘Memory team’ (quite apt) went to memory team and had more tests and the wait for the diagnosis commenced.

During this year waiting I was planning my wedding, dad was ill so many times, major infections, mini strokes, terribly bout of D&V which meant he collapsed in a hotel room only with mum to raise the alarm. Each time he had a hospital stay we would explain that he was waiting for a diagnosis. He had some stays in hospital that caused massive distress and upset to all (sometimes due to poor care). He would beg to go home, he would blame mum it was very distressing. There were calls that he may not recover and he just rallied round. We did not know if he would be able to walk me down the aisle (well walk is not the ideal term as dad is in a wheelchair). Levels of confusion fluctuated as the infections had an impact but as always, family and mainly mum just carried on and got on with what had to be done. Just before the wedding Grumpy was diagnosed with Alzheimer’s the memory team nurse came out and gave them both the news and commenced Grumpy on medication (not a cure). Grumpy made it to the wedding and managed to stay for a little but he was not well.

On the journey home mum said she was so scared has he kept on slumping and all she wanted to do was get him home. He had many more stays in hospital (in and out every few weeks)  and it was exhausting for mum. I have to say I am in awe of my mother she is incredible.3FBD670A-D848-4029-A4E9-9C89D529F51D

Dad was assessed for 3 months by the memory team who came out with the medication each month after the first month they changed the medication and on the third month stopped all medication. They felt the medication side effects outweighed the benefits. By this time dad had really taken to his bed he had stopped really watching TV. He used to love all sport and watch films with mum but he no longer watched (there will be logs of moments of watching TV). He had become obsessed with hankies and a towel that he needed with him at all times, he slept a lot and if he got up he would never stay up long.

After a particular visit to hospital after a major bleed the decision mum came to was to ask for some help from carers just in the morning. We had to make our voices heard each time he stayed in we had compiled a medication list we had written ‘this is me’ we had explained fully all about grumpy and at times some wards were not good in fact there was only one stay which was when he had the bleed that we felt all his need were cared for and mum could have a break.

Its a bit late that I am writing this after 4 days away training. The journey has a long way to go but we know it’s going to have sadness and loss at the end. We have a group that helps and that group that my  mum set up is called Grumpy’s groupies which is not for people of a sensitive nature. It is all women who love grumpy and who have a warped sense of humour but it keeps ups going.

So I will continue and tell you some of our joys that we have had and triumphs but also some difficulties and issues along the way that should not have happened.

Oh an a snippet from Grumpy’s Groupies as you can see it’s really helpful stuff  but it keeps us smiling even when things are overbearingly awful.Next 1Start 2

 

 

 

Dad (AKA grumpy) Our families Dementia journey

Lets look back:

2017 Journey begins and diagnosis……….Mum had seen a number of changes within grumpy which made her concerned regarding his memory. The issue we have is that grumpy has multiple conditions and as many people know some can mirror Dementia Symptoms and also the medication he takes could have had an impact. However, mum had to make an appointment for dad at his local GP to talk about some of his conditions and at that appointment she raised her concern. She wasn’t sure she would raise it as she was worried about Grumpy’s reaction. However, Grumpy also said he had noticed things that he was worried about.

The doctor on this visit was one of the ‘good ones’ (sadly the surgery isn’t that good). So there and then the GP commenced the initial testing. Which went similar to this:

  • name and address was given to him at the start.
  • asked him to count backwards from 20
  • asked him to say the months of the years backwards
  • showed him a selection of pictures and one of the was a crown and he asked which picture related to the royal family.
  • He then asked him to tell him the name and the address that he had given to him at the start.

On speaking to mum after she said for some he did well, he did remember some of the address and name, he was able to get half way counting and for the months. However, he struggled with the picture question and could not explain the crown being part of the royal family.

The doctor then said he has some markers that could mean he needs further testing and that he would refer to the ‘Memory team’ (what it says on the tin I suppose).  He also asked for medication review, and full round of bloods to rule out any other condition that could mimic Dementia.

Grumpy went along to the memory team with mum and sister Joanna which is really important to have as many people as you can that knows them. As we also see different changes which helps the professionals to see the bigger picture. He was also sent for a CT scan.

During the months that followed dad fell unwell, had a number of TIA (mini strokes), post stroke seizures, bouts of infections which meant lots of trips to the hospital (not always a positive experience). Not having a definite diagnosis was hard as the hospital did not meet his needs at the time and a lot of this was down to not having it in black and white. I felt they dismissed us which added even more pressure.

I am going to continue to write about Dad’s journey. This is just the beginning 2017 was a hard year. I am aware it is not over and that 2018……….onwards is going to have more hard times.

A few things to note:

  • keep notes if you notice changes
  • during the investigations do not forget to breathe
  • once diagnosis comes do not think life is over there and then
  • know that dementia is a terminal illness and this can be something we need to support people understanding
  • a diagnosis does not mean someone does not have capacity understand so remember how they feel about the diagnosis
  • depression is a common reaction
  • compassion and empathy will help you to support someone.
  • plan for the future
  • before diagnosis consider Lasting Power of attorney for health and wellbeing (only comes in to action when the person loses capacity).

 

Will be back with more experiences and progression within Grumpy’s journey.

By the way ‘Grumpy’ is a term of endearment that all his grandchildren use (because he is grumpy but it a loving way).

 

Blog or not to blog does the swearing and risky blogs get more traffic?

Starting to lose the motivation to blog. 

I don’t seem to have the traffic, or the readers interest in what I have to say and let’s be honest we blog, so people see what we have to say (bit of self-pity). I have been trying to think of what I really want to say, being self-employed and needing to have a positive reputation I hold back a little on what I want to really say. Should I hold back? Will this really affect me gaining more work?

Sometimes I want to shout out about the amazing work Carers do, I want to also scream when there are diabolical care stories of abuse to people because of others. I don’t want to be all diplomatic. I want to say it how it is, I want to say care is bloody hard. It’s not a ‘fits all job’. I want to say you will get stressed and you will go through the saddest of times in your role and you will cry, scream, laugh and just hold your breath.

However, I want you to know I have stayed within Care industry for 30 years and I would not swap it for another industry. There is so much I could swear about, and I want to. I want you to know how passionate about care I really am. I want you to know how much I am desperate to value care and carers – both paid and unpaid. When I think about the stuff I want to say it fills me with frustration that I hold back.

More things I want to say are:

Hey, you lot in the government get a grip, wake up. Social care needs you to take it seriously. We may not be the NHS, but we do a bloody hard job and work as hard as the NHS staff. We need more visibility that is what is missing.

Other parties hope to get our votes, but you don’t seem to want to get it right. Don’t promise us the world when it cannot be given, don’t lie to get our vote, don’t say you can if you can’t. Talk to us on the front line, talk to those who do the most intimate care for the most vulnerable people within society.

You out there – the one who thinks think you can treat people badly, stop it right now stop being cruel, unkind. Stop abusing our most vulnerable. Stop what you’re doing right now and think. Think about that being someone you care about. If you can’t then go work elsewhere – do not work in care and do not think we will put up with your practice.

Inspectors – look beyond the chatter that some companies front with, the chatter that keeps you from looking at what is really going on. Take notice of the concerns and make sure you start asking the right questions. Know that sometimes you get it wrong and we know that, but please do not constantly get it wrong.

On a personal note just for the care workers who are supposed to support my Dad, take of your coat, do not talk to your colleague over my dad, do not moan about your company and do not forget to put your gloves and aprons on. Think about what my dad needs and wants. Do not think about your next call and the lack of time to get to it – that is not my Dad’s fault. You have lost my respect and I am disappointed that you are called carers. Don’t bother coming to work if you cannot provide good care and support.

However, the poor care both in hospital and at home my Dad has had doesn’t mean I am turning my back on promoting care. I still value all the other people within care that do an amazing job. So finally thank you to all you that do a GOOD  job who do give up their time and sometimes time that is unpaid.

Just a quick blog Dementia related

Important part of being a trainer is to keep your self up to date, refreshed and competent in what you train so at the moment I am doing a free course within Dementia. Its not advanced training its getting back to the basics and updating on my understanding. As part of the course there I have just watch a video from Terry Pratchett. He was talking about the difference in getting a diagnosis of cancer compared to dementia (both horrid). He made a point that people when diagnosis with cancer with be given hope or feel there is still hope but for someone diagnoses with Dementia there is no hope of recovery (at this point in time) and therefore he felt he was very alone with his diagnosis as everyone knows hope isn’t something that comes into it.

However, he still wrote best sellers and was focused on  living well with Dementia. 

I am enjoying the course it is simple and when I finish I will gain a certificate and I am already feeling I am being reminded of things to consider but also how important it is to not have one size fits all approach. Its something I teach a little of but I am now going to ensure it plays a bigger part in my training.

The course I am doing is from the university of Tasmania I have shared previously on my FB page. This is not a recommendation as for some it will not fit their learning style but hey check it out. Free learning is important and CPD can only support you with what ever you do in life. You don’t even have to be working in care, or medical field to do this course. Knowing about Dementia is important for all.

Check the links out you may find them helpful

 

Care/Career

Blogging does not seem to come overly natural to me but I still want to promote care and promote discussion/debate. I feel the need to ensure people realise that care work is valued and should be a chosen career .

In the about me I talk about my career within the care field but I feel my caring commenced long before I got a job in care. I was always looking for someone to look after even as a child. It was who I was, I remember being asked at 14 in school about what I wished to do when ‘I grow up’ (not sure I have grown up yet). My response even then was not met with encouragement as I said I want to be a social worker or a probation officer (none of which I am ). Thing is I was not overly academic as you may notice with my poor grammar (apologies). So I wasn’t encouraged I don’t believe.

However when it came to work experience I was sent to the care home next door to where I lived.  I can still remember my first day as a 15 year old going in to the home, I remember even then the home had an odour that should have been dealt with, there was not as many safety protocols in place and inspections that there are now (or maybe there was but just not followed). I was asked during this work experience to support someone to the toilet, it was a man who was around 80 I  was left to take him to the toilet on my own. I was terrified but I knew instinctively that I could not allow him to feel he was a burden and that I was nervous.  I knew I had to pretend it was OK, I got on with it and can still remember the first sight of a man naked from waste down. However, it didn’t stop me from deciding to do some kind of care work. What it did make me realise is that I would never do what this home did, I would never leave someone inexperienced, untrained to do such intimate support.

Care I think was a natural career for me to choose, I liked listening and giving advice to people I met who were going through difficult times, I liked babysitting, I enjoyed just helping I felt I was achieving something each time I was able to help.

Once I completed school I went to college, I was interviewed for the course ‘Preliminary Certificate in Social Care’ the tutor a glamorous lady asked me what I wanted to do and at that moment I said ‘until I do the course I don’t think I fully know’. Mum had come with me and she said to my mum ‘that was one of the most grown up answers I’ve heard’.

I went through 2 years at college (interesting time) completed GCSE and gained some good grades. I knew then I still wanted to try to become a social carer. I applied for a number of jobs in all different areas (none of them near home). I eventually got a job at a company in Cambridge working with people with Learning difficulties. It was the first step in a career that now spans 30 years. Care is a career it really is and its worth doing.

My career in care has been interesting, colourful, noisy, hard, scary, sad but mainly has been my choice it has been my passion. I want more people to know that it’s one of the best but hardest jobs you can do. It’s not valued like it should be and certainly the pay is not the best but its a career it really is. I would still choose this career all over again.

My journey to where I am now:

Support worker

Senior support worker

Deputy manager

Registered Manager

Trainer Assessor

Regional Manager of Training provider

To Self Employed in House Trainer (this was my goal and I have been lucky to achieve). 

So I will continue to try and blog about care, my family, my dad (AKA Grumpy). I will continue to highlight the good that is out there within care. I will also share when there is not so good care but will hopefully remind people that we can make it good.

Its a quick blog today to try to get myself back to it. I had 5 draft blogs that I have deleted that never came to the page. I now have added 2 more drafts but luckily today I have at least published one. If you are reading this please comment, share, add what you believe care means to you. Most of all if your reading this and you are thinking of a career and have the attributes to be part of care then feel free to check out some of the links.

 

Pull up a chair and lets talk

I’m sat here on a bank holiday weekend feeling somewhat sorry for myself (have a bad back). I have gone through social media seen the usual posts that raise my blood pressure and seen the posts that make me smile and make me thoughtful. I have cleaned (a little), moaned at my husband (waiting to moan at the 14 year child who still sleeps). I have thought about doing some work (but I should be allowed a day off even if I am self employed). I have gone back to reading (Where Memories Go) and as I was reading it got me thinking (this would worry my husband as me thinking causes stress).

It got me thinking of when I thought I would write a book, I did commence ‘Pull up a Chair’ but can’t find it anywhere (feel sad about that). I am asking myself today if I should try and start again? Some of you will know ‘pull up a chair’ was a title my friend Valerie used to say and that it would be a no holes barred self help book but it would be blunt and no ‘oh woe be me’ type of self help. I adapted it to more of a about my life book which would obviously have Valerie within it. Over the past year things have changed in our family but I now question do I scrap it fully or do I try something new. I am not the most articulate in writing so not sure I could actually write a book.

However, today has me thinking as I sit here feeling sorry for myself. Valerie would not be happy she would give me a course in ‘get the f@ck over it’.

Blogging has become less of late I don’t really know how to make myself more visible. I still want to blog about care but not sure its the most fashionable subject or glamorous. However, I will keep trying.

Happy Sunday All and if feeling sorry for yourself then ‘Pull up a Chair’ and talk. cropped-etchings-and-roses-ivory-wallpaper_yellow-chair1.jpg