Spoke to my mother the other morning. As you know dad fondly known as grumpy has Alzheimer and Emphysema, he has been rather stable with his health recently. Continue reading “Carers have to adapt”
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.
Part 2 will be coming but just need to ensure I have something interesting to share.
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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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?
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.
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.
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
Come on let’s bloody stop this. Why oh why are we allowing our most precious/vulnerable people to be placed in poor care homes. For those amazing carers (there will be some in these homes) that work in these homes that lights are flickering please speak up and stand tall and try to use your kindness elsewhere or to help make these homes better. CQC and the councils use these good carers to make the difference. Sort out the management and the owners make them stand up and explain publicly as to why they are failing! Make them explain. Why are they not in public at a public meeting telling us their reason. why they are failing. How can we accept failing homes.
My anger is justified as these care homes can access funding and support. Yes there are cuts but there are ways of not affecting care there really is. We are suppose to care for our most vulnerable, bloody hell lets get it right. Come on society please value care, the government stop cutting things for the most vulnerable.
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. 🙂 🙂
After a little more thought I have decided to commence the instagram 365 happy days photo challenge but not sure I will have enough inspiration to take a picture every day to meet 365 days. 2 down and these are the first. The first one shows my darling cat assisting with the Xmas clean up (no help just a bloody little toe rag) and the next is his toy discarded for sleep.
So as I go on with this challenge I hope to gain inspiration from the people around me and hope to offer some light-hearted scenes of happiness or what at that moment in time gave me a smile.
I aim to gain inspiration from the new places I will visit both work wise and personally. As I am going to be assessing in some new establishments I hope the new learners will give me my passion for training and teaching. Or if not then at least I hope my nurturing side will be awakened again. I am going to be completing 2 days at a children centre to talk to parents about care and what it means to work in care. If I can inspire one person to take on the challenge of working in care and who can offer a positive input in care then I will be happy. Or at least I will be able to share what values I have about care work.
I am already thinking about the photo for tomorrow the question is what will I be inspired by tomorrow?
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.
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,
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.