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.

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Happiness and Grief

When I smile does is mean I have forgotten you

When I laugh does it mean I’ve moved on

When I cry does it mean I will not stop

When my sadness is painted over my face does it mean people think I am miserable

The moments I forget your gone does it mean I am in denial

Happiness and grief mingle together

The patterns are intertwined

You will be one then the other.

Moments of grief that pounce upon you with no warning

The little reminders of them fleetingly cloud your thoughts

The ball in the face moment reminding you they are gone

Then happiness takes over and you smile

You smile with joy with no tinge of sadness

You laugh from your tummy, loud and free

But then the smile changes as you are reminded of their smile

The emotions are rapid, senseless and varied

But they are what you feel, they are your way of grieving

They will bring you comfort in time and the sadness can be watered down

The grief will be there but the joy of knowing them will give comfort

Happiness and grief go hand in hand but be sure to smile and laugh be sure to remember

How you feel is you and no one can tell you not to feel

Wishing that sometimes We didn’t know what We know!!

Decided that sometimes knowledge of something can make you know too much.

I am sure this sounds like I have possibly lost the plot but I have worked in care for 30 years. Supporting people to develop skills, keep skills and to be cared for through the end of life process.

Some people would think knowing information or knowing what’s to come is a good thing. However, not always as at the moment it isn’t. Knowing the progression within Dementia and knowing the end of life process means, I know what my dad is possibly going to go through. As a trainer in social care I stand each month and teach about dementia awareness which has an impact on me as I am actually talking about what might happen to my dad, over and over (I love my job but it can be hard when going through something).

Knowledge and experience

As my dad progresses through the dementia journey I struggle to get those images out of my head of people I have met, cared for through this incredibly harsh disease. I see the people screaming as they are being cared for and shouting for mum because they have forgot the reality they are in. I see the progress of having to assist the person to eat with a puréed diet because there swallow has been effected. I also see the families broken and frightened of who they now, don’t really know. I see the daughter visiting their mother but she no longer remembers being a mother. I have also been lucky enough to be with people at their end of life and know what it can be like sometimes I wish I did know as I am sure others wish they didn’t know.

My reality at the moment is wishing I didn’t know wishing I was being told by a professional at each stage rather already knowing quite a lot all at once so I know the possible end journey.

Just a family member

We forget that people who work in care or in the caring profession whether a doctor, nurse or care worker that they will have loved ones who may be suffering from a condition. But just because they have the knowledge they are not a doctor, nurse or carer when we are talking about a family member they are just a daughter, son, husband, mother etc. They too will be on the journey and even though they can’t forget what they have learnt or seen they will wish they could for a day so they can be just like everyone else and be the daughter, son etc.

Dementia is a journey for all. Just remember to enjoy the good days and role with the punches on the not so good days. Do what you can and just love each other.

Take care all.

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?

 

Social Care and the NHS…

For the last few days I have been ‘tweeting’ I am new to this and just wanted to be more pro-active. I have had a good time just commenting and retweeting tweets until today. I know social media is known as a bit of a harsh place to be at times. However, being part of the care industry and training both nurses and carers I think it is important to be fair when posting about social care and the NHS. I made a comment that it is not only social care that has the poor care but so does the NHS and the response from a particular person was rather harsh. Telling me that NHS is superior and telling me ALL social care providers are rotten (not word for word but that the tone of the comments).

I am not disrespecting the NHS I am grateful for it but when will people understand bad care happens in the NHS to. We as a family have witness this on a number of occasions (not just once). It seems everyone is quick to speak negatively about social care both home care and care homes. Don’t get me wrong I have been honest about our experience with home care also but lets ensure we are not constantly thinking the NHS is superior to everything. It has it’s faults as does social care.

Social care is so devalued and until we value it more we will always have people saying all social care providers are bad and all NHS is superior.

There are many things wrong and one of the things wrong is providers not being held responsible or monitored properly by local authorities. Recruitment of managers, recruitment of care workers not appropriately done. However, the issues are similar within the NHS as well and we should not forget this. The lack of monitoring of how a ward is run as I just don’t get that in the same hospital wards can be so different.

We must push care/nursing/healthcare as a chosen career so we need to show that society and politicians value it . Time we pushed the best practice that is out there, time we were more constructive with our concerns, time to be a solution so if you have a concern do speak up regardless of whether it’s the NHS or not.  Local authorities and CQC time to really understand that one persons experience is important to check out. Time we had zero tolerance of poor practice and care. We have the 6 C’s lets make sure they are followed. Stop thinking all are bad there are so many good providers, hospitals, carers/nurses out there. Stop tarring all with the same brush.

I don’t expect all to agree and I don’t mind if you disagree but once I replied to comments today the person sent me a very harsh reply and placed a screen shot of may profile up. It felt like I was being bullied into shutting up. Sadly my confidence on social media is still not up there so I deleted and blocked the person. I am not about airing my laundry in public. I am about being fair. I am about voicing an opinion. I am about learning from others. I will continue of Twitter but it has left an uncomfortable taste in my mouth of how people can be. Kindness and respect cost nothing.

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.

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

I have been quiet!

Me and Mental Wellbeing

Sometimes you just gets carried away and you forget to take a moment to just stop and do something as simple as sitting in the garden. At present I am working mainly doing  “in house training”. On the plus side it is work (which if fantastic) on the flip side it does mean long days and quite a bit of additional travelling, which means I’ve not had time to stop, think and contemplate.  Even on my trip to Brugge texts and calls were coming into my mobile and I was thinking abut work; which was not ideal

Currently, I have a number of new blog ideas and will try to get these down and posted soon. However, for now I am sat here in the garden preparing for next week, compiling a powerpoint for Mental Health Awareness training. Which has got me thinking  and I decided to stop for a moment and blog.

Today while looking on information and refreshing my knowledge on Mental Health I was able to think of my own Mental Wellbeing (its not something I talk about a lot  or even try to think about to much).

Like many people, I can say that periods of my life has challenged my mental wellbeing. While researching the prevalence of mental health I realised that more people develop mental health issues at a younger age.  The amount of young people that suffer anxiety and depression is quite worrying. However, when I think back I realise that I suffered anxiety as a youngster, its just that the name was not used or the awareness of Mental Health was not what it is now.

Mental Health unfortunately did follow me into adulthood and its only now I admit what it is, I used to just ignore it and would never ever admit to labelling how I was feeling (not sure why but a hidden illness comes to mind). Some of how I felt was about loss of control and fear of what might happen to my family or friends and then it would build so I would feel anxious.

I am lucky I have a supportive husband who has admitted that he is still learning about Mental Health, and initially did not understand why I react to the simplest of issues in the way I did, and seemly blow them out of all proportion. Now though, he does and he helps me to structure things and take control which has helped. This has allowed me to manage my mental wellbeing to a degree .

I now recognise and am more aware of times in my life, when my Mental Well being has been challenged and I am trying to be more open and honest about my feeling and not hiding them away for fear of judgement and what might happen.(Work in progress)

Things that have helped;IMG_0230.JPG

  • Taking control of my financial situation (thanks to my husband) as now I am not as afraid about money as I used to be.
  • Autonomy within my career which has allowed me control (well some control).
  • Trying to open up a little more to my husband.
  • Being aware that I am not in a good place and trying to not ignore.
  • Trying to organise my life a little more.
  • Enjoying simple things in life.
  • Sitting in the garden and just focussing on whats important.

Don’t get me wrong this is not a quick fix , but it has helped me greatly and given me peace of mind. I am hopeful that as time goes on things will continue to progress and I will continue to work on myself. IMG_0250.JPG

I sit here now and feel good and feel happy I can take moments like this (yes I am working but working outside has a different feeling). I wouldn’t want anyone to think that I am suffering I am not I am just sharing which I think is a massive step. Hiding is not the answer, feeling embarrassed is not a feeling we should feel, being scared to admit how we feel today is not allowing us to heal.

So today I am good but hey tomorrow it might be different. However, as I say make the most of the good days and feel alive as life will still be there and will still need you to breath. Just stop take a moment, look at the simple things like our cat Kobe needing attention from the most caring man I know.

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Don’t forget to take pleasure in the simplest of things because that will give you joy and joy is the greatest defence against feeling low. Stay safe, speak up and do not hide away.

 

Maxine