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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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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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

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.

 

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.

 

It was a real DAY OFF! :)

Well for a number of years my day off would consist of working to catch up but today I actually had a day off.  I relaxed in bed until after 9 am (this does not happen often), I got up watched TV, which included the Great British Bake off. Listened to smooth radio whilst relaxed in the bath (no longer a gorilla 🙂 ). Went for a walk along the riverside and enjoyed my hobby of photography. Then back home to yet again to relax and listen to music. Days off are great when you actually don’t work. So a word to all you people who worry about targets, deadlines and getting behind, just stop and enjoy the day, take a moment to do your hobby or interest or just stay in bed.

Value the DAY OFF!P1110473 (2) P1110485 (2) P1110492 (2) P1110493 (2) P1110496 (2)

Back to the basics of Talking about care

Care is not a cool subject to discuss it seems, in the public eye or in their ears as they seem to just hear about the poor care that goes on out there. I am aware that some care homes are not up to standards and some employers have a lot to learn but the on the ground level carers who chose to do this job are being devalued.

We have to see social care as important as clinical care. Just because the care workers or carers may not have a degree or doctorate or a nursing qualification does not mean they are less important or valuable. Until the government value the work people do care will always have bad press or be seen as a job people fall into (I remember someone saying anyone can do OMG no not true) . I get that people think its a job that fits please do not go into care work because it just fits. We need compassion, passion, confidence, nurturing and empathy attributes to enable the people that are vulnerable to be supported in everyday life, whether that is at the start of life or and the end of life.

I have had the honour of supporting people within care, some at the start of finding their independence and others at the most vulnerable times of their life’s. I look back and some of the things we changed over the years to ensure the people we supported had a voice is remarkable and I believe continues in many care providers (we just don’t sing our own praises).

Many of these carers, care workers are getting minimum pay to care for all our loved ones or to care for us in the future. I ask you what price can be put on that. There has to be some sliding scale and in care there must be a different minimum wage surely.

I have just seen a post on another site I am a member of and its made me think about the lonely world at time when you are caring for a family member and how isolating it can be. I hope this lady does not mind but she noted in her post that she felt invisible within her life and that she is ‘just a carer’. I would like to say ‘just a carer’ is really not a title I like, the just bit is an injustice and I am telling you out there that anyone who is a carer the word just should never be used ahead of the word. You are a carer which I would title as a very important person who enables, encourages, guides, supports, loves, cares, fights, communicates and stands out in a crowd for the person you care for. A lot of the time you are selfless and forget about you so I am telling you in a very nice tone, we do not forget you, we see you and we hear you. Never ever feel isolated or invisible as we are grateful for the work you tirelessly do and at times it must be terrifying of what your day will bring but all I can say is hold on to your strength that you most certainly have and remember you will get through this and there will be the light and the hope.

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Poem of loss and allow your grieve to come out.

Hold tight let the tears flow

Your loss will hurt

The pain will grip you

Allow yourself to feel

Hold tight let the tears flow.

Think of the joy they brought

Think of the hope they showed you

Hold tight let the tears flow.

Think of the memories

Think of the pictures you have stored in you mind

Think of that smile, that belly giggle

Hold tight let the tears flow.

Think of the past

Think of the future

Hold tight let the tears flow.

Remember the love so that it will never be forgotten

Remember the hope and the kindness

Remember the unique person who was lost.

Open your eyes

See the stars

The brightest one will be yours

You will find the strength to help you on this long journey

Hold tight let the tears fade away.

Dementia and helping children to understand.

Just felt the need to share this great book that may support people who have children who are trying to understand what is happening to a grandparent or parent, friends etc.

It’s worth a look and certainly worth talking to children before they have to deal with anyone they know who may have Dementia.

http://www.carehome.co.uk/news/article.cfm/id/1570270/childrens-book-tells-story-lovely-old-lion-with-alzheimers