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.
Decided that sometimes knowledge of something can make you know too much.
I am sure this sounds like I have possibly lost the plot but I have worked in care for 30 years. Supporting people to develop skills, keep skills and to be cared for through the end of life process.
Some people would think knowing information or knowing what’s to come is a good thing. However, not always as at the moment it isn’t. Knowing the progression within Dementia and knowing the end of life process means, I know what my dad is possibly going to go through. As a trainer in social care I stand each month and teach about dementia awareness which has an impact on me as I am actually talking about what might happen to my dad, over and over (I love my job but it can be hard when going through something).
Knowledge and experience
As my dad progresses through the dementia journey I struggle to get those images out of my head of people I have met, cared for through this incredibly harsh disease. I see the people screaming as they are being cared for and shouting for mum because they have forgot the reality they are in. I see the progress of having to assist the person to eat with a puréed diet because there swallow has been effected. I also see the families broken and frightened of who they now, don’t really know. I see the daughter visiting their mother but she no longer remembers being a mother. I have also been lucky enough to be with people at their end of life and know what it can be like sometimes I wish I did know as I am sure others wish they didn’t know.
My reality at the moment is wishing I didn’t know wishing I was being told by a professional at each stage rather already knowing quite a lot all at once so I know the possible end journey.
Just a family member
We forget that people who work in care or in the caring profession whether a doctor, nurse or care worker that they will have loved ones who may be suffering from a condition. But just because they have the knowledge they are not a doctor, nurse or carer when we are talking about a family member they are just a daughter, son, husband, mother etc. They too will be on the journey and even though they can’t forget what they have learnt or seen they will wish they could for a day so they can be just like everyone else and be the daughter, son etc.
Dementia is a journey for all. Just remember to enjoy the good days and role with the punches on the not so good days. Do what you can and just love each other.
Take care all.
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.
Lets look back:
2017 Journey begins and diagnosis……….Mum had seen a number of changes within grumpy which made her concerned regarding his memory. The issue we have is that grumpy has multiple conditions and as many people know some can mirror Dementia Symptoms and also the medication he takes could have had an impact. However, mum had to make an appointment for dad at his local GP to talk about some of his conditions and at that appointment she raised her concern. She wasn’t sure she would raise it as she was worried about Grumpy’s reaction. However, Grumpy also said he had noticed things that he was worried about.
The doctor on this visit was one of the ‘good ones’ (sadly the surgery isn’t that good). So there and then the GP commenced the initial testing. Which went similar to this:
- name and address was given to him at the start.
- asked him to count backwards from 20
- asked him to say the months of the years backwards
- showed him a selection of pictures and one of the was a crown and he asked which picture related to the royal family.
- He then asked him to tell him the name and the address that he had given to him at the start.
On speaking to mum after she said for some he did well, he did remember some of the address and name, he was able to get half way counting and for the months. However, he struggled with the picture question and could not explain the crown being part of the royal family.
The doctor then said he has some markers that could mean he needs further testing and that he would refer to the ‘Memory team’ (what it says on the tin I suppose). He also asked for medication review, and full round of bloods to rule out any other condition that could mimic Dementia.
Grumpy went along to the memory team with mum and sister Joanna which is really important to have as many people as you can that knows them. As we also see different changes which helps the professionals to see the bigger picture. He was also sent for a CT scan.
During the months that followed dad fell unwell, had a number of TIA (mini strokes), post stroke seizures, bouts of infections which meant lots of trips to the hospital (not always a positive experience). Not having a definite diagnosis was hard as the hospital did not meet his needs at the time and a lot of this was down to not having it in black and white. I felt they dismissed us which added even more pressure.
I am going to continue to write about Dad’s journey. This is just the beginning 2017 was a hard year. I am aware it is not over and that 2018……….onwards is going to have more hard times.
A few things to note:
- keep notes if you notice changes
- during the investigations do not forget to breathe
- once diagnosis comes do not think life is over there and then
- know that dementia is a terminal illness and this can be something we need to support people understanding
- a diagnosis does not mean someone does not have capacity understand so remember how they feel about the diagnosis
- depression is a common reaction
- compassion and empathy will help you to support someone.
- plan for the future
- before diagnosis consider Lasting Power of attorney for health and wellbeing (only comes in to action when the person loses capacity).
Will be back with more experiences and progression within Grumpy’s journey.
By the way ‘Grumpy’ is a term of endearment that all his grandchildren use (because he is grumpy but it a loving way).
I’m sat here on a bank holiday weekend feeling somewhat sorry for myself (have a bad back). I have gone through social media seen the usual posts that raise my blood pressure and seen the posts that make me smile and make me thoughtful. I have cleaned (a little), moaned at my husband (waiting to moan at the 14 year child who still sleeps). I have thought about doing some work (but I should be allowed a day off even if I am self employed). I have gone back to reading (Where Memories Go) and as I was reading it got me thinking (this would worry my husband as me thinking causes stress).
It got me thinking of when I thought I would write a book, I did commence ‘Pull up a Chair’ but can’t find it anywhere (feel sad about that). I am asking myself today if I should try and start again? Some of you will know ‘pull up a chair’ was a title my friend Valerie used to say and that it would be a no holes barred self help book but it would be blunt and no ‘oh woe be me’ type of self help. I adapted it to more of a about my life book which would obviously have Valerie within it. Over the past year things have changed in our family but I now question do I scrap it fully or do I try something new. I am not the most articulate in writing so not sure I could actually write a book.
However, today has me thinking as I sit here feeling sorry for myself. Valerie would not be happy she would give me a course in ‘get the f@ck over it’.
Blogging has become less of late I don’t really know how to make myself more visible. I still want to blog about care but not sure its the most fashionable subject or glamorous. However, I will keep trying.
Happy Sunday All and if feeling sorry for yourself then ‘Pull up a Chair’ and talk.
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.