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.
Been thinking about this for a while and as some of you may know Pull up a chair and lets talk care comes from an ambition of mine to write a book inspired by my beautiful friend Valerie who died just over 12 year ago. I did do some initial writing for the book but then found it to be not the right time.
However, in bed last night I was thinking about my Mother and Father (grumpy) and how things have been rather hectic, challenging, upsetting and just exhausting for all. My thoughts led to me think of how our family and the young children and how we are all going to be seeing Grumpy change and how this maybe distressing at times.
So firstly I thought as an adult I will be able to research and look up what the process maybe for some with Dementia but the chidren may need something more simple and real to allow them to digest the changes in a different way. There are lots of books out their for children but I want it to be personal for them. So, I have actually commenced writing a potential children’s book. I know where did that come from?
I sat on my phone in the notes section and commenced thinking of what I would want them to know and how to place a positive on the changes.
So all just watch this space this may be something I just do for my family. My daughter Lauren is also going to be part of the writing process (she is so much more articulate in her words and also she is a great proof reader).
Hey what is there to lose apart from time of course but I have that so ideal time to have a go.
Be ready and I hope that I do it. I will keep you updated.
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