Quality of Life (what does this mean)?

I was in the process of writing my blogs when a question from a conversation I had had with my mother that morning  crossed my mind.

That question was – Quality of life, what does it mean to people?

During the conversation with my mother we spoke about my fathers’ current health and his recovery after a recent bout of pneumonia, which then led to diagnosis of emphysema. I should add at this stage that he has also got Alzheimer’s.

Currently he is taking a medication for his Alzheimer’s, as well as steroids to help his lungs. This combination of medicine, my mother has explained to me, has made my father more awake, engaged in TV and films and less confused.

However, she is concerned that since today is the last day of his steroids, he will decline again and she will end up rushing back and forth to hospital.

So I said then maybe they should look at giving the steroids full time if he does go downhill; as quality of life is so important.

My family knows that my dad will deteriorate, and know what to expect. We will ensure that his choice are respected, and that we all love him as we always have.

Yet, whilst we must ensure that he has quality of life, we must never forget that my mother (his main carer) is entitled to her own quality of life.

Of course she is happy he seems much more aware and awake, but it has  impacted on  her ‘quiet time’ as she calls it. In the past she would assist dad to bed and then have time for herself to surf the net, embarrass us on Facebook and to watch ‘Hollyoaks’ but at the moment she isn’t having that. She confided in me that she was feeling Guilty about feeling Selfish for wanting her ‘quiet time’

But do you know what she isn’t selfish and she has every right to have a Quality of life also.

As a loving, and caring, carer, who looks after her Husband each and every hour, of each and everyday. She should not feel selfish, if her ‘quite time’ is disturbed.

It’s this  ‘quite time’ that enables her to recharge her batteries, have a bit of ‘Me Time’, and is vital for her own well being, health and mental health.

It is critically important that she is able to communicate her thoughts and feelings and not be judged, but instead be listened to and supported.

I believe quality of life is key to my dads and mums continued happiness. My mum will ensure my dads quality of life, my family must support and listen to my mother to make sure that she has her.

That support is vital to all carers in this world.

Don’t forget to care for the carer. Don’t let them silently blend into the background.

So in conclusion I feel quality of life to me is about:

• Maintaining identity: ‘See who I am!’
• Sharing decision-making: ‘Involve me!’
• Creating community: ‘Connect with me!’

For both the person who is being cared for and the carer

Let me know what you think? Share your understanding please.

Maxine

 

 

 

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Colours and sounds of a Care worker :)

Part 2 will be coming but just need to ensure I have something interesting to share.

Attention to Care

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 care. Yes its 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 cause 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…

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What’s next, What can I do?

Today I am sat at home, waiting  to do some one to one session with learners (working from home), had appointments booked in but sadly not one completed at the moment and its gone 12:00 (tick tock). However, I have had an interesting call about a new idea for a support site and I am now questioning what I want to do next.

Don’t get me wrong assessing in general is a good job and it fits with my life but like today, I have not had a session completed, sadly people not picking up the phone, no work to mark so in some sense it becomes hard to ensure someone’s learning journey is consistent and meaningful. Commitment sometimes is lacking or schedules change in care and people just don’t let me know.

So I am now sat here thinking (cogs turning, head full).

My ultimate goal was to go into more training, motivational sessions to get people to buy into the care and how to be the best. I wanted to get a community talking about care but not sure how.

I see the best but some times not the so good (poor practice and care). I set up my Facebook page and this blog to try to get a community talking and sharing their stories but to be honest its not working. Have less then 100 likes on FB page which if you consider the amount of people in care that’s just nothing. Followers on word-press I have 21. Is this because I don’t use profanities, I do a blow by blow log of my day, is it because people just don’t talk about care or is it people in care just don’t have the time.

So where am I going wrong? What do I need to do?  Where do I go from here?

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Time and committment

What can I say I’ve neglected my blog, just seems less time to think and write. However, have been to Scotland and then to my very first festival. Also lots of work in the garden at weekends but clearly not in my 20’s or even 30’s for that matter as I ache.

So Scotland was amazing, beautiful as always I love it. One day we will be moving to Scotland but for now its enough to visit just wish time would allow us more visits.

The festival not even sure what to say, I last 45 years not going to a festival and then I went. Well it was great fun but camping is not for me. Embrace were fabulous and it was a nice surprise meeting the stars of Emmerdale. Paddy we loved him.

Then the gardening well lets just say we have done wonders and we still have more to do, lots of trips to the tip.

Save the dates have nearly all gone out. Wedding 2017!

Now to work well Assessing is good, my contact with some lovely learners make it easier to do my job. As usual paperwork and politics always have a negative baring on how much you enjoy your role. Still for me if I can impart one piece of information to enable someone to do their job better and then ultimately the care should be better.

No I am going to set myself a task that by the end of the year I will have completed a well being week. I want to do this and was suppose to do it in August but time and other commitments placed it on a back burner. What I ask myself is why did I not find the time? I placed well-being second and I need to address the balance.

So I will do and I will ask for stories to be shared regarding well being and mental health. Trying to lift the darkness on being able to talk about suicide is my aim.

So until then hope all are well and those carers out there are keeping themselves well.

Love long love strong and hold tight things sometimes will seem unbearable but please talk, chat, open up, share and most of all if your a person who is been told ‘LISTEN’

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

Its who you bump into sometimes!

Well its been a month and a half since I gave up college assessing (it just wasn’t for me), Even though still feel somewhat nervous and anxious, I am now starting to feel motivated. Yes motivated and its not bad. Yes my little monster in my ear still tries to bring me back into a less motivated space or tries to pass on the CBA function. I AM NOT LISTENING!!!!

Anyway I digress… well yes motivation is back and that was helped when I bumped into a manager of one of the very first domiciliary care agencies I assessed in. Well it was a quick catch up (gossip). However, after the brief catch up we went on to talk about care and the impact of double up rounds on the ‘purse strings’. Now we all know cuts are happening (disgraceful cuts) but there is nothing we can do so we have to be seen to still trying out very very best to meet the needs of each person. So double up rounds (2 carers) are being looked at to see if there are ways that one carer can do the same as 2 (calm down no need to shout). There are ways but this means equipment and I mean the very best equipment out there that cost money and that will be a big outlay to begin with however, in the end it would save money but also in some cases provide a better care experience. We need the care providers on board with this but so many see the £ signs for double up and do not want to budge. However, luckily I assess in one place that are open to looking at the change and to look at what this means to the people they support. Never, in any legislation does it state 2 carers must hoist yet care companies work on the proviso which is incorrect. What it does say is safe use, meeting the needs, assessing the risk and adapting to ensure correct equipment.

So come on lets look at this and lets see how it will help, so if your a person out their that is caring for the loved ones and they need hoisting work with the providers to look at the systems in place. If you a carer be open minded to listen and to try. For carers who are unpaid maybe the new pieces of equipment out there will be better. Please check out this research and also the equipment.

http://www.independentliving.co.uk/moving-handling-it-takes-two/

I am lucky enough now to be able to go to an awareness session to understand more about using equipment suitable for one carer to do. I am open minded regarding if it works and how it will benefit. I feel at times people are sat waiting for 2 carers to turn up (I witness this at one care company and it was very distressing to see a lady desperate to use the facilities and couldn’t as other carer hadn’t turned up). Also the amount of times I have had to tell people to not talk over a person to each other about their own bloody lives. So if this stops that then surely its worth a go. SAFELY, RESPECTFULLY and INCLUSIVELY .

Working together will help and will ensure the BEST OUTCOME BASED CARE

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Simplicity of life🌧☔️💞💞

Tonight after feeling a little frustrated and low. I had a simplicistic moment that reminded me of being thankful and happy with what my life has become now. Sat in bed and the rain began to pour down. Watching the rain drops and listening to the rain whilst laid next to the man I love.

It was a gentle moment which initially I didn’t appreciate until Alan mentioned going out and sitting in the rain in the dark (something new for me) ☔️☔️☔️☔️☔️. So wrapped up in my dressing gown and Alan in his fleece we went outside. Alan prepared the brollie and we sat💞. Do you know what? It was lovely and very romantic. I sat, was held, kept close and dry by this man who has shown me how to look further and appreciate what is around me. The rain was lovely the droplets sliding down the brollie and the sound of pitter  patter. The dark sky’s just made you feel lost in a new world where we only existed just for that moment nothing mattered apart from that very moment. Lost in the sound but the imagination of being at loch Eck in the rain was beautiful. P1110133 (2)

Appreciating what I have is simple it’s not sweating the small stuff but looking at what’s there right there and right now.

Thank you for the new moment Alan you are my rock and remind me of the simple things in life.

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. 🙂 🙂

 

 

 

 

Professor Winston is really all that.

Wow! what a great day today I have had at work, well not exactly at work, at a conference with an amazing guest Professor Winston. He was simply brilliant, inspiring and just simply engaging. What he had to say about health care was spot on and that there is a way to go to get it right and we can not really plan to what will happen. Yes people are living longer and therefore more care is going to be required. One of the most heart wrenching but comforting things he shared was that there is proof that someone who maybe in a coma or lost due to another condition can seemingly hear you. So those words you say have to be caring, loving, nurturing and encouraging when talking to someone who is silent.

So as I see it, time is now to get care right, to improve care for all, to nurture potential that is out there and value the people who are caring and supporting our most very vulnerable people (our loved ones). Yes! I hear the cry there are many carers who do an amazing job but why are you not telling people about it and sharing these good news stories. The requirements need to be changed to not have people just relevantly trained we need people properly trained, from 16 onwards to provide care. Soft skills (how to communicate, how to work as team and what values are) are just as important as knowing how to administer medication for one example. I am not saying you need a degree but I am saying you need some formal training to support people. You need to show you can support someone in a way they want to be cared for or supported. Lets hear peoples needs and lets observe what they want.

The other day I wrote a poem but after today I changed it. I hope it resonates with people (I am not a poet or writer so please bare with).

Please see me

When you look at me

What do you see?

When you talk to me

What do you hear?

Can you see me?

Can you hear me?

All I ask is,

See me

Hear me

Don’t ignore me

Know that what you say I can hear

I maybe silent but I am here.

I am not who I was

I am not who I thought I was

I am lost

I am hidden

So I ask you

Please look at me

Please see me

Please talk to me

I wish I could answer.

Please listen hard

Please seek me out, I am here.

Please see past my silence

See past the shell

See me for who I was and not just who I am now.

Care and what does is mean?

Care Definition:

The provision of what is necessary for the health, welfare, maintenance, and protection of someone or something:the care of the elderly, the child is in the care of her grandparents healthcare

 

For me care is about enabling, supporting, reassuring and protecting people. I know there are lots of amazing carers out there who do a tireless job (some not even seeing it as a job).

My mother cares for my father she puts all her energy and love into ensuring they have a good life together enabling and supporting him to enjoy every aspect of life by making their time together full of experiences.She values every moment she has and never ever looks back.

I have 2 friends who care for their boys who have difficulties and do it with warm hearts and open minds, not expecting the world to see them  but I see them both, their time is filled with caring for these boys who need their full attention but never do they regret being there for them or regret having them just as they are.

Me well my job was to care, within the care sector supporting individuals with Learning disabilities to fulfil what they needed or wanted within their lives, not always positive moments (at times a little shocking) but mainly moments that will stay with me, moments of achievement and rewards, moments of sadness and joy, moments that would make your hair curl but never ever did I regret my choice of career. I actually used to love my job even though it was full on and there was a lot of battles that I tried to fight on their behalf (some we won as a team).  What I worry about is that now in the job I do I don’t see many people who have the same ethos or compassion about supporting people out there who are vulnerable, yes there are some who are out there who love their job and doing amazingly but surely this should not be a few it should be most.

So I ask you what is care to you and how can we nurture new carers to give the BEST they can to people who need our BEST. Is it about qualification as I don’t think it is.