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

 

 

 

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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.

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

Colour and sounds of working in care Part 2

Part 2

I could go on and on about being a care worker, which I was for 20+ years I could use lots of  language that may upset my potential customers. So, I am going to try not to swear to much but apologies if one drops in now again.

Care is still what drives me to do what I do. I hope to ensure who I meet will be great at supporting people who are classed as vulnerable and require care. We should share our experiences it’s an amazing but bloody hard job. It’s not valued as much as it should be, and it needs to be. I hear so often about poor staff retention and not being able to fill positions there has to be a reason for this and its time to do some work on finding out why.

I was a young 18-year-old when I first moved to Cambridge on my own for a job in social care. It was my ambition to work in care from when I was 14 and so I went to college for 2 years and then got my first care job in Cambridge. I remember the interview and there were quite a few candidates but was so pleased when I go the job. I moved from home on my own and started my career in care. Part one tells you about my experiences of the first day.

I loved it even though it was so time consuming. I found myself just going in and getting on with empowering the people I supported. I would ensure they knew I was there to support and enable at times with some interesting and noisy outcomes. I wouldn’t say it was all fun there were moment when I was younger where I struggled with my own ability to speak up and stand up for people.

I made a choice at 20 to have children and left the company for 5 years going back a very different person. I had grown as an individual and seemed more able to speak up and I did which meant I was able to be brave enough to speak up about a poor manager. That changed the lives of the people I was supporting in such a positive way but had a positive effect on me also.

I have had the honour of supporting people who have learning disabilities to develop and achieve independence as many levels and I value my input and the input that the people have had that I worked with over the years. I was lucky enough to work for a company that had many supported living homes on one site within a small village. we were a tight knit team and would ensure that there was full social inclusion both between the support living homes and the local community.

The growth in the people I supported is what drove me to continue and to then go onto become a Senior to deputy manager to a registered manager. I saw every level as a step to my ambition of being a manager that could make a difference. I had an amazing team of young and older people who were committed to providing a support service that was focused on people being a valued member of the community. We did that, we did somethings that were new and never achieved before. We sometimes think we can support people to the end of life, but this is not always the case, if someone reaches 65 and still in supported living at one point they would have been transferred to the ‘older persons team and potentially moved to an elderly residential home. Which was not in my opinion the best option. So, we worked hard to ensure the people we supported had a home for life. I had a great team to work with. We changed the registration and ensured we had the staffing levels and equipment to ensure we could meet the needs. So, we did it we ensure that if someone was unwell and at end of life we enabled them to stay and die in their own home.  I have to say that being with the persons family and support them was very valuable. I was able to see someone be settled with loved ones around them. I remember on person we supported and being with the family after he died and the family saying ‘mother always said he would be a tall man in death’ the person we supported had scoleosis but when he died his family found comfort in seeing him that way.  It was one of my best achievements in my career and will always stay with me.

All these journeys that we go through are as important as each other.  (think I might be waffling). As carers/trainers/managers etc we have an impact in all we do so for those days that are hard look back and remember the good ones.

So now that I am training I use all the experience I have had. All the noises and colours of living to ensure the training is interesting and honest. Training for me is about reality of life and living well with the support of people who want to enable you.

Simple.

January is Over

Well what has January done for us lately? Well, business was good and looks like its taking us into February positively.

However, Grumpy saga’s still continue (reminder grumpy is my father) he has had 3 admissions to the hospital and another 3 discharge letters that are unhelpful, not clear and sadly the last one not factual. How is it someone goes into hospital for one thing and comes out with something else and really not seeming any better well in fact potentially worse? With the discharge letter leaving out vital information for the GP.

This time for my mother the experiene was distressing with a Doctor shouting at her and a Nurse (head nurse I believe) being rude, snappy and unhelful to my mother unless oddly if others were there. With the lack of understanding within Dementia and the need for my mother to be there to help so as my father does not get distressed. I don’t understand this and I clearly did not see any understanding of his needs both physically and emotionally.  What fustrates me is we have completed a THIS IS ME write up to tell them about how he is, his history, his needs, his capabilities but I am not even sure they bothered reading it.

Of course on looking at the CQC report I am not surprised the hospital is inadequate and the fact that it took me to tell them to place a fluid chart in place before they did.

So why am I writing this and not naming and shaming well thats because my mother would not like that as she is very much appreciative of the NHS and of the hard work some do but also there is no point as it seems not even CQC have responded to a complaint  I put in. I am therefore writing it for me. I am writing to just show that we need to try to speak up get a voice and say no to poor practice, poor empathy from people who should know better. I am writing because I want to know when Grumpy has to go back in that I know he is having the best care they can possibly give and that they consider my mother and emotional wellbeing.
What this hospital lack or at least now 2 of the 3 wards my father was on are the 6c’s which are:

Care

Compassion

Competence

Courage

Communication

Comittment 

These a key principles not hard, nothing you need to be taught really, things that we should expect and things I remind people of when I do in house training.

So where are we now with grumpy, well he is home. mother is managing and is doing as always and amazing job. Best put that she would do better if the council came and got a bed that has been stood in her garden for nearly 2 months. 

Mother his helped by some (what should I call?)  gentle jibes through the facebook group Grumpy’s groupies. It have got worse by the way with the content to bad that I can not screenshot much of it. This group continues to do its job of light relief and offloading. Its important to know when you need to be serious and when you can just show how nuts you are as that is what this group is about. ‘Its not all about Grumpy’. It has to be about our mum, our grandma it has to be to ensure she is kept up beat in times of adversity.

So bravely I share some of the content.

As you can see its so wrong but for my mother it is so right its her place and she gains so much as do we. Try it. Caring is hard butcan be made easier with the right support and right dose of nuttiness.

 

Hey feel free to share you groups. Smiling and laughing is important. Take care of each other, speak up and be the persons voice and know your rights.

Book time

Been thinking about this for a while and as some of you may know Pull up a chair and lets talk care comes from an ambition of mine to write a book inspired by my beautiful friend Valerie who died just over 12 year ago. I did do some initial writing for the book but then found it to be not the right time.

However, in bed last night I was thinking about my Mother and Father (grumpy) and how things have been rather hectic, challenging, upsetting and just exhausting for all. My thoughts led to me think of how our family and the young children and how we are all going to be seeing Grumpy change and how this maybe distressing at times.

So firstly I thought as an adult I will be able to research and look up what the process maybe for some with Dementia but the chidren may need something more simple and real to allow them to digest the changes in a different way. There are lots of books out their for children but I want it to be personal for them. So, I have actually commenced writing a potential children’s book. I know where did that come from?

I sat on my phone in the notes section and commenced thinking of what I would want them to know and how to place a positive on the changes.

So all just watch this space this may be something I just do for my family. My daughter Lauren is also going to be part of the writing process (she is so much more articulate in her words and also she is a great proof reader).

Hey what is there to lose apart from time of course but I have that so ideal time to have a go.

Be ready and I hope that I do it. I will keep you updated.

 

Its been a while (I’ve Lacked inspiration)

So its been a while since I even tried to post something on here, no real excuse except the inspiration needed to try to write something appealing has been missing! 😦

I can blame my work in some way for my lack of get up and write attitude (as its lost) as its been all consuming in an emotional way. Trying to fit into a team that is established can be difficult and has been difficult. So now I have decide to leave the College and try freelance work again (scary). This is another try at establishing enough work that gives me some feeling of achievement.

What I know is that  I love care work (its been part of my life since I was 18) and love being able to go into homes/companies and support and nurture potential but its getting less easy as companies are not valuing the training needed for their staff. Cutting corners and reducing staff, only using distant learning and rarely having someone come in and train their team. So I am at a loss how my role can alter this mentality, how can I now impact on these people if their own company does not value their development. Now of course this is a sweeping statement but sadly in so many companies this is true. Yes I have been to places that are great and seem to value their team and also their clients but sadly at present this is less then it should be so for people like me this is somewhat soul destroying as I feel teaching and learning in care is as important as any industry. Care is a multi million pound industry yet it has lost its value in the society.

So my inspiration is going to have to come from somewhere else and now I need to find it.  Just going to get up and look around and evaluate what I want to do and why I want to do something. Shockingly I even find myself reflecting on my choices with my career and see what made me take the path. One question I always know how to answer is;  what do you want to achieve?  Easy to answer as I want to achieve appreciation for carer/support workers/ care assistants or whatever role there is in care. I want to achieve the respect for the care industry to be able to finding the good news stories more readily then the bad stories  respect.

So for now I just want time to decide and time to evaluate. I hope I will be able to post more often and have more interesting things to report/say. Its going to be an interesting few months I think.

ONWARD ONCE MORE!! So Come on pull up a chair and value the view and join me in the crusade to bring care once more into the light of positivity. 🙂 🙂

 

 

 

 

Resolutions!! WHY and WHAT FOR

Why do people make resolutions what are they for? Is it to make them feel they have a plan of action or is it to make the world a better place?

I am always baffled by the making of a new years resolutions as surely when you break them you feel like you failed and this will surely do the opposite of what a resolution is made for.

As I see it instead of a resolution write a bucker list of possibilities not over expectations and not set in concrete. My dear friend Valerie (not longer with us) used to pin on her fridge her aims and possibilities for the year ahead which we always joked about. However, after yesterday and my fiancée mentioning that we should do a list I have decided to start our own. The list will consist of things we hope to buy, things we hope to do, improvements we hope to complete and personal well-being.

First job on the list completed and after clearing out the cupboard I am going to utilise the container that I found with loose change in it and commence the second item on the list and that is to add to this container after each day with any loose change in my purse.

So I forego tradition resolution and opt for stealing Valerie’s idea and do a year of possibilities. Oh and another item to be added will be a Wedding date and a theme so as my pinterest doesn’t look like I am having a breakdown of ideas

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2016 and what does it have to offer?

selfiefirstly I think there will be lots more of these daft moments with these daft people that light my life up.

Well I have until midnight to decide if I want to do the 365 photo challenge on instagram. Its something that I thought of doing but not sure if I have the stamina and the ideas to think of a theme everyday.

This year will be another busy one as we settle in our new set up and become a couple that now live together, which as many know holds challenges but as we are a tight couple who love each other I think we will be able to take on any challenges that we come across. I will be setting a wedding date and will continue to find ideas to make the day perfect for us.

I hope this year I find my passion for the work I do again or if not that I find a job that will allow my passion for care to be used. I would hope that I hear of more good news stories to share on here to show that care is a valued role within society and is essential to ensure that people are cared for.

I wish all my family and friends love, health and happiness throughout the year but also hope if they have challenges that they can face them bravely and notice the people around who can support them.

I am excited to be at my daughters graduation in January, I will be proud to see her in her outfit and to get her degree with me watching on beaming with such joy at her achievement.

I hope that my fiancée will get his books out there more and will know that people like his writing and enjoy what he creates. Echoes of a Storm (The Storm Series Book 1) its worth a read.

I look forward to my eldest son enjoying his new life in Bristol with his lovely lady. I also hope he manages this time to plan things and to keep in touch more, I can hope :).

 

 

Dementia book…..

Morning all

Day off today and I aim to spend it doing things for me I hope. Firstly cleaning so that weekend I can relax and next will be to (well what I am doing now) update blog and Facebook page. I will then venture to do as requested by my lovely man and go purchase some clothes or shoes with my gorgeous daughter.

So as the 2nd job is to update this page I thought I would share a book that I have just seen on the Alzheimer’s page on Facebook and I know you out there in blog world will have people you know who are suffering in the darkness of this disease call dementia and all its strains.

 

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I hope you find the book a worthwhile read.

Hope all of you out there that are struggling to support and care for loved ones with dementia will gain something.

There are many things out there to help please share any of your thoughts. To give guidance and support I hope you are finding what you need X

My Facebook page is there just to use as a sounding board if need be for gaining advice or just sharing stories and experiences. Also if you find a resource for care. Not just dementia like care ever type of care we do out there.

Please check out my Facebook page,

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Sharing our stories is a way of giving value to those that support individuals, the media is quick to jump on all the positive stories but we need to see some of those good news stories in care that are out there. I know they exist just people seem to focus on negatives.