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).

 

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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.

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

 

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

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.

“OUR MOTHER, GRANDMOTHER”

3FBD670A-D848-4029-A4E9-9C89D529F51DIf people have read some of my blogs in recent times you will know my Mother is the carer for my father who has many health conditions including a recent diagnosis of Alzheimer’s disease. Last night at 9pm he showed signs of being unwell and needed some medical attention. My mother is 70 years old and she wakes every day at 5:30am – sometimes even after not having a good night sleep. Since the diagnosis, dad can get unsettled and have some obsessions.

After making the first call at 9am it took until 2am for medical attention to arrive at their home (not a complaint as it was a busy night for the services), so by time dad was taken in and settled they did not leave the hospital until 6am. As you’ve probably realised, this is over 24 hours since my mother woke up – over 24 hours without sleep, for a 70 year old. She never once complained once though, she just got on with it and took it all in her stride – because that’s who she is.

My mother (who at this point had my sister, Joanna with her) had been awake over 24 hours. So as I write this I am hoping she is sleeping and hope that my dad is being looked after well by any nurses or doctors. We have as usual all come together to support and make sure she has someone with her and we are thankful for the family we have.

My mother will wake and just continue.

She is a carer, but, ultimately, she is a wife who loves her husband and who wants him to be safe, well and have a meaningful life – a meaningful life with her. So she finds the strength to carry on being the best carer that she is, every single day.

So, from all us groupies and all the others in our mad, slightly odd and special family, we appreciate you and what you do mum. We love you and thank you for showing us what love is and how we should care and love through adversity.

I would personally like to thank Joanna for staying with you and making sure you drove ok (terrible back seat driver).

So today, anyone out there who is a carer of a loved one, know that we are grateful, we value your courage and strength. We know you won’t ask for help but know the help is there. Know that we see your tiredness and hear your weariness. We know its bloody hard, it’s frustrating and sometimes it’s like being in a nightmare. We know you do this because you love and you feel you must to do what is best for yur family – you need to know your loved one is safe and cared for after all.

You do what you do so well that we are all in awe of you. We all hope that we will grow in our own strength. We know you are the role model. If we could, we would bottle who you are, so we could share it around to all who are vulnerable so everyone gets equal quality care. You are who should be training our carers of today, you are the training material we need. YOU ARE THE REALITY OF CARE AND CARING.

Grumpies Groupies (WHY OH WHY)

The name of a small family group which was set up to chat and keep each other informed regarding my father (AKA GRUMPY). My mother set up the group (she has become a great user of facebook sometimes embarrassingly) she though it would be good to be able to let us know to be aware when she needs a nap in the day and so the idea was to post things like bad night so phone silence. Or grumpy not great today, etc etc. So all about gumpy.

Well interestingly its sort of turned into a group of women discussing life, issue, concerns, comfort, love and honestly. Well sort of but in reality its got gossip, good news stories, current affairs, just basic bitching and offloading of being a parent at times for some. I should say but if of the sensitive nature you maybe offended with some of the language and discussions I am going to share with you.

Oh with some of the members they have learnt how to add GIF’s and the joy of that can be that a whole evening communication is just through the art of GIPH’s its a GIPH OFF.

 

So as the start:

So all in all not a bad start within a group know check how Grumpy is and check how Mum/Grandma is dealing with things and if we can be of morale support.

However, here is the opposite to what the start was:

Now I know the language and content is terrible and I can only appologies, I will be sharing more and they will make your hair curl but do you know what this is my mothers life line.

We were able to respond at the weekend quickly when mum posted a video on how Grumpy was so confused and unwell it meant that she got people round to help quickly and to support her to call for assistance and get medical attention for Grumpy.  So here is how it helps:

No Grumpy is home with a camera in his bedroom for mum to keep and eye on him. We managed to keep everyone informed and it worked.

So I will share more insights at a later date, but on a serious note, remember to check on each other support the person who has to support their loved one 24/7. Remember they need to be able to laugh through the hard times and realise life goes on even when thing are hard. Everyone one needs to be given a laugh and at the moment the Grumpy’s groupies are full on with the messages today to the point I am struggling to get my work done.

So enjoy the snippets as I say there are more and here are the ones from today:

My family support group we look after each other. Sort of

Colours and sounds of a Care worker :)

PART 1 (not sure there is a part 2)

It came into my head tonight that there must be a tail or two that care workers could tell us that will shed light on the fun it can be to be a carer. Yes it’s a serious job (I am well aware), but if like me, there has been some funny/amusing/amazing/extraordinary experiences that within care then maybe we should share. It’s just a thought. Of course no identifiable information that would break ‘data protection’ or ‘confidentiality’ but stories that may bring a wry smile to your face or did bring a rye smile maybe even a loud laugh.

My first day as a support worker (18 just left home) gave me a shock, having a lady ask me outright if I had a Fanny and the proceeded to say I have ‘see’. Oh and yes she showed me. How I managed to be brave enough to stay I do not know but I did. It still brings a wry smile to me face when I think of her that first moment.

Not long after this I was told I would need to practice ducking and I just laughed at that comment not understanding the real implications until, a glass and a table came across the room then I realised ducking was a skill I mastered very quickly. I found myself drawn to the services users who everyone seemed to want to avoid as they were deemed as ‘challenging’ and they were but finding out about the person and learning the triggers and reasons behind the frustration helped enormously.  So I would watch and observe and move very quickly when another support worker went in feet first with no thought for the persons feelings. They soon learnt to duck. Sadly 28 years ago there was not  much training or clear understanding. However, I now enjoy being able to share my knowledge in supporting positive behaviours.

If you could see care in colour then below is what it would be, unique, bright and sometimes explosive. It’s all the colours of  the rainbow and more.

colour-splash-1

 

If you heard it in a sound then it would be all the chords, notes you can think of going of at once.

sound

So what I ask is that you focus on these stories of joy, amusement, uniqueness and inclusion and share them with respect. Remember on the harder days it’s going to be a better day soon. Think of the colours, think of the sounds and then remember your going home you are just there for a moment in some of the people’s lives so make that moment mean something. Make that time be colourful, make the smile as bright as you can and focus on what matters.

Please feel free to share your stories, please feel free to ask advice and feel free to be unique. YOU ALL MATTER 🙂

Care or Fits?

Its a funny as a person who worked in care generally all my adult life and now work as an assessor/trainer in Health and Social Care, I sometimes think where is the care. Its strange but there are people that are working within care because ‘it fits’. Is this really the reason we want people looking after our loved ones, for me I am not sure.

I’ve questioned this before and as much I don’t want people to choose working in care for this reason solely it is a reason and justified ‘fits’ means ‘of a suitable quality, standard, or type to meet the required purpose’ so actually not a bad definition. We all have life’s and we all have people we may have to take responsibility for and working in an industry that can allow us to be flexible surely is an OK reason to work in care. Its more suitable or acceptable to use the above words of I work in care to care for people. Its sounds all rose coloured and pretty don’t you think?

Now this is where I want to bring in Care and the meaning of care ‘he provision of what is necessary for the health, welfare, maintenance, and protection of someone or something’ so in actual fact not massively far removed from ‘fits’. I can get by thinking when someone says fits are they thinking of quality (see definition) surely they are! Also ‘required purpose’ which could be to deliver best practice care.

Sadly and here I go fits is just not for me. When I interview someone please don’t tell me you reason for applying is to say it fits with childcare and that’s your reason. I know its important but surely the reason should be about the practice of care. I meet carers within my job and at present I have to say I am lucky to have a great group of Learners who yes need it to ‘fit’ but through that I can see they are choosing ‘care’ to provide a service that is of quality.

So please think of your reason for going into the care industry, public opinion maybe that its ‘wiping and cleaning people’ but I promise you its so much more. Yes it can ‘fit’ but its so much more then that, it should be an honour to provide support to someone who can’t or struggles to complete everyday task. Its about well being, its about people, its about progress, rehabilitation, its about end of life. So please think long and hard before choosing care as a career. Please don’t choose it just because you can.care-young-and-old

Story of a Care worker

Care is amazing but hard please value the ones who do the job.

Over the years I have met so many care workers so great, exceptional, amazing, passionate, driven to provide the best of care and then the ones that are not all of the previous comments. Carers from all over the world who are committed to supporting our most vulnerable, yes I am not blinkered to the poor care out there but its getting better and we are more vocal at the poor care now.

So many experiences I have been lucky to have had,  from supporting independence to enabling someone to die at home with their loved ones. Every moment just as important as another.

I have been through the saddest of time and then the times that has been utter joy. Each experience has left a mark on me and has made me who I am today when I go and do assessing/training for people who work in care. I focus on my learning through experience and try to impart some experience on others. I am always passionate   about care because this is one of the most important industry you could work in.

I think back at times and remember by first day of walking into a Big House in the Village of Milton in Cambridge (Edmund House), it was an old building which would be classed as an institute but Mencap were working hard to alter the care/support for people. I came at a time that I was able to be part of that. Watching the development of a more independent and inclusive provision. I was 18 just finished college in Scunthorpe and thrown headlong into the world of care. IT WAS A MASSIVE LIFE CHANGING EXPERIENCE!!!

I have met along the way people who have made an impact on me some for the good and some for the wrong reasons. However, I love the care world, I have faith in the care world, regardless of society not respecting or noticing the hard work carers do. We pay the minimum wage to the people who are caring for our most vulnerable but they do it in spite of that.

I want to continue to try to value and get others to value care and therefore I may change my page to something more inclusive. I have not been able to have the impact I wanted and now it back to the drawing board to think about how I get care out there as a positive. I want a community who are not afraid to share their stories and to share the advice so time for change I think.

Care needs a voice and I may try to get it one.

So please come on and pull up a chair and talk about care. Talk about everything you want to. Open the can and lets not place the lid back on lets just share our experiences and stories that will make people smile and see the positives.

Scary times being OUT and as a definite IN I worry for care, training and all the people who care regardless of what country you are from you do a vital job.

Take this as a bloody big thank you from me. pooh