So you all know about my Dad AKA Grumpy, well he continues to go through the journey that is Alzheimer’s and the progress within this cruel and unforgiving disease (yes a disease not a normal part of ageing). So as a family we are now realising the importance of making memories and today was one of the days that my niece managed to make one and video the evidence for us. She captured her daughter and us all a memory that previously his grandchildren have and now great grandchildren may still have time to make. So it was great to see a video of Dad with his great granddaughter stood on his wheelchair has he drives it into the house. He actually looked like he used to be and do you know what it made me think we need to grab those memories and just store them to share with those that come after us or are to young to remember. So log it and keep it, enjoy looking back, value who your person is and don’t just see the condition. Remember they are who they were just a little buried under all the chaos that is Alzheimer’s. Its a short blog today but honestly it is so important to remember and save those moments and love them. Just take a moment and sit back and remember the person in front of you. SEE THEM!
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:
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.
If 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.
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
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.
So I have done it, I have commenced my own business called Attention to Care which is a Health and Social Care training company based in Cambridgeshire area.
I have a lovely website that is still in the process of being changed and altered, a face book page and business cards on the way (second time lucky as I missed the ‘n’ off).
Well I have worked within care for 28 years in some role whether support worker, manager or trainer/assessor I still see approaches that could potentially place people at risk. So I want to educate, value and nurture the carers/managers/employers to enable them to provide the ‘best’ service they can to vulnerable people. The way I know I can do that is deliver, bespoke and best quality training I possibly can.
Its been a while since I posted and a lot has happened, my father has been unwell and recently diagnosed with Alzheimer’s and Emphysema. Which is rather a big deal and I am very aware that even though I deliver Dementia Training that I have to be just a daughter and sister when speaking to my family as I don’t want to be the one that has to inform them of everything as otherwise I believe it changes my relationship. Don’t think though that I don’t talk about it and support my family with information they need I just don’t speak like I am training.
This is a brief blog but will try to now get more completed and find resources to share on my blogs to try to support you carers out there.
Please check out my site and please share.
So this week has been one of those weeks that have caused stress and unrest within my world of work. I am freelance assessor within the care field and this weeks the company I freelance for may now need to change. It has implications as there is no guarantee the new company will want a freelance assessor so things are a little up in the air.
So what have a been doing to ensure work continues and I earn a living, well firstly I have kicked myself up the arse and pushed for my training to be fully completed with induction and moving and handling so I can go in to companies and train correct practice. I’ve been ensuring all my learners will be ok if I can not continue (I would be gutted). I have been organising the next couple of weeks to ensure I am on target and prepared to move forward.
Saturday I went to an open event at a new care home/nursing home where I chatted to some of the family and clients about why I value care and I loved it just promoting care and training. I met Gloria Hunniford (didn’t feel right to get a selfie).
Sunday arrives (Mother’s Day). My children as alway give me beautiful cards (daughter as always sorted the boys) and flowers. I then spent the day appreciating what I have the sun helped and my wonderful husband to be. Sat relaxing in the garden just chilling looking at our garden and realising how much work we have put in. It was so perfect, birds flitting in and out of the garden and the daffodils swaying in the breeze. The aroma of a roast dinner being cooked by my daughter and a glass of vino. I realised in that moment I am so lucky. I have children I am very proud of, a husband to be who loves me for me and a bright future ahead. Simplicity is sometimes best and as my man would say ‘simples’.
So the point to this was to try to get all to see that sometime ‘simples’ is enough and that if today you are missing your mum, whether due to them not being here anymore or if they are lost in the world of Dementia they will always be you mum, mummy, mother not your best friend your mum the one who either carried you or chose you, they are mums.
Mums come in all shapes and all sizes. They can be mothers, grandmother, aunts, sisters, friends or they can be Dads doing a mums role as well as their own. So please just take a moment to appreciate what you have, had or even what you are going to have.
Happy Mother’s Day one and all. But bigger then that don’t wait just for Mother’s Day to appreciate your ‘mother’ any day is ok to just say thank you.
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?
I am sure there are going to be a lot of these predictable new years posts but it has to be done and it has to be done well.
So here goes:
2016 what did you give to me.
January you gave me a graduate as my gorgeous daughter graduated from Derby University. A very proud moment.
February was a quiet month but still but I got to sea seals on the beach in Norfolk with my wonderful friend ‘Kinky’ or Kate if you need her real name.
March was a busy time just getting out and about and meeting up with friends.The mask picture was a game of pin the cucumber on the hunk (you had to be there).
April was all about the gardening and family time. The big garden was commenced and a pop to Lowerstoft to see mum and dad.
May the gardening became a massive build or should I say demolition, poor Alan ended up on his back with me giggling. Love continued.
June was all about the queens birthday and a mission to try and get the community together which was not a great success but we had great time with the usual bunch of people.
July was about big weekend, time alone with Cameron in Norfolk, checking out the botanic gardens to see where we will have our wedding photos and then barbecue in the new look garden.
August was a trip to Scotland with some great friends who fell in love with the scenery. We had an amazing week,lucky with the weather and lovely place to stay. It was also the month when cucumbers and tomatoes grew beautifully.
September was a first for me going to my very first festival and then meeting Paddy of Emerdale. The parents visiting which was lovely and I got my heron photo. It was a good month. There was much sadness in September also which a number of my friends had to deal with and they dealt with their sadness with such dignity and strength.
October was a charity event time for breast cancer when planning it I was just thinking back at Valerie the real founder of the title to my blog but then how would I have known it would then be news that would be hard for all with my niece being diagnosed with breast cancer. It was a great night and every penny will count. I then had a visit to bakewell with my lovely friend and her children.
November was a month where things were a little quieter but with a great night thrown in at Gin of the Rocks. Night at the museum and more gardening for Alan.
Now we come to December where we had the best time and the most fun just spending this month with family and friends. So no we have got to 31/12/16 a little poorly so no going out but what I do have is 2017 to look forward to and I can’t wait.
Good bye 2016 and welcome with bells on 2017. We have a wedding, more babies due and people to fight hard to ensure they get well. So positive vibes required and celebrations to be focused on.
Happiness, Health and Love I wish all.
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.
If you heard it in a sound then it would be all the chords, notes you can think of going of at once.
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.