Yes I might just write a children’s book, the other night I was just up on my own watching TV and I started to think about our journey with Alzheimers and how it was confusing for the adults. It got me thinking of how confusing it must have been for the smaller children in the family. So I am going to try write a book to sort of explain what I believe a child may have been thinking. As you may know I am not very fluent in my writing but I have the ideas and the skeleton of what I wish it to be. I just need to decide how to place it into a book format. Hey it’s all good therapy, it allows me to think about my dad (Grumpy) and it allows me to place some of my thoughts in a child like way as sometimes it is confusing and scary.
So Grumpy I hope will appear in a book one day and also my Mum or to the great grandchildren grandma scarecrow.
Happy to hear from people who have succeeded in this endeavour before and let me know how to write a children’s book.
That it all I was sharing today. Have a fabulous Sunday
If you have read my blog or visited my attention to care group on facebook then you will have heard me talk about Grumpy (my Dad). Grumpy died from Alzheimer’s 3rd April 2019 it was a short journey for us from diagnosis to Grumpy dying. Grumpy and my mother had both made arrangements to have their bodies donated to science rather then a large funeral. They had both signed up for donation and we were all informed of this by them both. I was sceptical I have to admit, I wasn’t sure how I felt about it but now I can tell you I could not be prouder or more amazed at the process.
Mum and I spent the 4th APRIL phoning to see if the local body repository could take dad, do remember it’s not as easy as signing a bit of paper. Once the person has died you need to check which university hospital has room (you are normally signed up to your local one) or check if the have restrictions (because some will not take people of a certain size or if the died of an infectious disease). Mum called all around the country and eventually Nottingham university hospital (The National Repository Centre, based at City Hospital) agreed to take Grumpy. They organised the transport (there was a cost for us) and then took him on his journey to help within medical research. We had been informed that he could be with them for 2 years and so we were prepared for the wait but we had been reassured that we would be invited to a cremation ceremony.
We decided to do a little get together for family and friends to remember Grumpy which was lovely. However, I think there was still an element of a feeling things have not been completed and I suppose there was an element of when may they call to say they are doing the cremation ceremony. Not that I am saying this is a bad thing but I think you have to be prepared to feel that regarding a loved one and not to hide that feeling (which I believe we did).
After having Grumpy for 5 months mum got the call to say they are ready to have the ceremony and invited us to attend (people had mentioned it would not be personal or that there would be more then one family in the same ceremony). Sadly not everyone could attend but some of us could and I am very grateful that I was able to be there. We had the cremation on 3rd September 2019 at 9:30 at Gedling Crematorium it was the most beautiful setting.
We arrived as Grumpy was been taken in and we were able to give the sunflowers and roses we had prepared with all our names on to be with him and my sister Joanna wrote him a note which the lovely funeral director placed on the coffin. It was very emotional but I can honestly say it was so personal, kind, thought provoking and comforting service I have ever been to. There was not an overly formal feeling Bernard the funeral director informed us that him and his team have been the ones driving Grumpy around to each of the hospitals. He reminded us of what a help grumpy will have been to mankind for selflessly allowing scientific research and young doctors learn from his death. We were able to choose the songs that played as we walked in and while we sat in the room and as we walked out. We were allowed time to go to the coffin and place our hands and say both hello and some of us said our goodbyes. Bernard did a beautiful ceremony and I was able to get up and do a speech about Grumpy. I have to say Nottinghamshire funeral services did us proud. I can not thank them
It was honestly beautiful and I will now be looking into this process myself. I am thankful that we have been lucky enough to have this moment and even though we still have one final trip with Grumpy to the Angel of The North it was a much needed time.
The point to this blog is to just say have a look at donating if you want, I have checked out the site and there is so much that they tell you so you know what will happen. I am so proud for what this service has done and as a family we thank you. We are grateful for what Grumpy stands for.
As I said the other day ‘grumpy was a giant of a man’ he was our grumpy and we will miss him’. We know he is waiting somewhere and we know he is telling us ‘before you come here you must have squeezed every ounce of laughter and joy from your life’.
We will aim to do just that.
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
Loss is such a unique experience for each person.
Sometimes we hear the news and immediately scream with sadness. Sometimes we start moving at hyper speed and make all the calls to inform people. Sometimes we are at a standstill, with no actually understanding what has just been relayed to us.
It’s unique. Unique to every person.
One thing I know, is that no-one can tell you how to feel or how you should be feeling. They can’t tell you to stop feeling or feel more. It is something that must happen when and as it wants. It must be organic.
Sometimes, you might feel the need to put on a façade. Sometimes you may hold back those feelings, simply because you don’t have the capacity to deal with them. Sometimes, loss brings anger – and that anger may have to be withheld.
Loss has a way of placing you in a state of turmoil, a turmoil that flits from one emotion to another within seconds. All I know is you can’t fully control it. It doesn’t run on a timeline, it doesn’t know how to fit into your life and come at the best time – purely because, well, there is no good time for it. That’s why, some people struggle more, some struggle less and some pretend. Many people are already dealing with struggles of their own and when loss appears, it makes it hard to see the wood for the trees.
I have recently been through a loss. Grumpy (my father) who I have spoken about before died 3rd April 2019. He had Alzheimer’s and in truth, I feel we commenced grieving from the day of his diagnosis.
I did not get back home to him in time. Suffice to say, this has affected me immensely. I feel regret.
I wish I could have seen his face one more time, I wanted to hold his hand one more time, I wanted to feel his love one more time. This is a comfort I wanted to give myself. A comfort I think I deserved. It’s not selfish to want this for myself; it is normal. I wanted to say, “bye dad”, “see you later” or just plain old “love you dad”.
I will get through this and I will continue to live the best life I can, but it may be be a little tarnished for a while. Perhaps forever, but that’s okay because at least I am feeling.
What I take from the loss of Grumpy is that in death, there is life. Great good can come from intense sadness and loss and this is exactly what I feel with the loss of my father. Grumpy chose to have his body donated to medical science and my mother tirelessly worked to ensure he got his wish. He could be the bridge between life and death for future generations. He could help scientists find more information about Alzheimer’s to lead them that step close to a cure. Ultimately,I wish he was still here, but only here at his best, at his strongest and at his happiest. I wish he was here to tell us we will be okay, even though I already know we will be. His comfort and huge presence will be missed more than words can explain. This has emphasised a fact I always knew to be true – making memories is the most important thing. So, please, everyone, make them and cherish them. Don’t waste a moment. Memories remain and pain disperses.
Don’t worry about how you feel. Just feel what you feel.
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.
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.
Important part of being a trainer is to keep your self up to date, refreshed and competent in what you train so at the moment I am doing a free course within Dementia. Its not advanced training its getting back to the basics and updating on my understanding. As part of the course there I have just watch a video from Terry Pratchett. He was talking about the difference in getting a diagnosis of cancer compared to dementia (both horrid). He made a point that people when diagnosis with cancer with be given hope or feel there is still hope but for someone diagnoses with Dementia there is no hope of recovery (at this point in time) and therefore he felt he was very alone with his diagnosis as everyone knows hope isn’t something that comes into it.
However, he still wrote best sellers and was focused on living well with Dementia.
I am enjoying the course it is simple and when I finish I will gain a certificate and I am already feeling I am being reminded of things to consider but also how important it is to not have one size fits all approach. Its something I teach a little of but I am now going to ensure it plays a bigger part in my training.
The course I am doing is from the university of Tasmania I have shared previously on my FB page. This is not a recommendation as for some it will not fit their learning style but hey check it out. Free learning is important and CPD can only support you with what ever you do in life. You don’t even have to be working in care, or medical field to do this course. Knowing about Dementia is important for all.
Check the links out you may find them helpful
It’s a question I ask without not quite knowing the answer. Christmas came and went and now we approach the dawning of a new year. But how has 2017 been.
Well it’s had lots of rollercoaster moments which have tested my strength and other people’s strength. In the world at present things are just confusing and challenging. Not that I am going to get into politics but some decisions have been astounding and damn right wrong.
Personally I have gone through an array of emotions but I value everyone one of them as it’s me, it’s what makes me me. My family have had some trying time with my fathers health and the worry that brings, a diagnosis of Alzheimer’s and continuing health issues.
Then I big high occurred I got married to a wonderful man, had the most magical day and shared it with so many people. So as you can see the extreme of emotions have been vast.
There was so much more to this year, a new baby entered our family, we have a survivor of breast cancer in our family.
We have shared many laughs and lots of tears some tears have been happy, some have been with worry. What this year gave to all of us was more strength as we all got through it we have all grown knowing that futures can be unpredictable but if we join hands and go into the future together strong then we can overcome the rollercoaster of emotions. As when one falters another can pick us up or can take the reigns for a while. It’s not all about dealing with things alone it’s about knowing when you need help.
So I will now look at 2018 and focus of growing attention to care I will look at the future and ensure I spend time appreciating things and time. So please look at our 2017 with a few days to go. I appreciate every person whether in these photos or not. There are people here that I see less but value so much. Just please enjoy the rogues gallery.
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.
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.
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.