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).
Starting to lose the motivation to blog.
I don’t seem to have the traffic, or the readers interest in what I have to say and let’s be honest we blog, so people see what we have to say (bit of self-pity). I have been trying to think of what I really want to say, being self-employed and needing to have a positive reputation I hold back a little on what I want to really say. Should I hold back? Will this really affect me gaining more work?
Sometimes I want to shout out about the amazing work Carers do, I want to also scream when there are diabolical care stories of abuse to people because of others. I don’t want to be all diplomatic. I want to say it how it is, I want to say care is bloody hard. It’s not a ‘fits all job’. I want to say you will get stressed and you will go through the saddest of times in your role and you will cry, scream, laugh and just hold your breath.
However, I want you to know I have stayed within Care industry for 30 years and I would not swap it for another industry. There is so much I could swear about, and I want to. I want you to know how passionate about care I really am. I want you to know how much I am desperate to value care and carers – both paid and unpaid. When I think about the stuff I want to say it fills me with frustration that I hold back.
More things I want to say are:
Hey, you lot in the government get a grip, wake up. Social care needs you to take it seriously. We may not be the NHS, but we do a bloody hard job and work as hard as the NHS staff. We need more visibility that is what is missing.
Other parties hope to get our votes, but you don’t seem to want to get it right. Don’t promise us the world when it cannot be given, don’t lie to get our vote, don’t say you can if you can’t. Talk to us on the front line, talk to those who do the most intimate care for the most vulnerable people within society.
You out there – the one who thinks think you can treat people badly, stop it right now stop being cruel, unkind. Stop abusing our most vulnerable. Stop what you’re doing right now and think. Think about that being someone you care about. If you can’t then go work elsewhere – do not work in care and do not think we will put up with your practice.
Inspectors – look beyond the chatter that some companies front with, the chatter that keeps you from looking at what is really going on. Take notice of the concerns and make sure you start asking the right questions. Know that sometimes you get it wrong and we know that, but please do not constantly get it wrong.
On a personal note just for the care workers who are supposed to support my Dad, take of your coat, do not talk to your colleague over my dad, do not moan about your company and do not forget to put your gloves and aprons on. Think about what my dad needs and wants. Do not think about your next call and the lack of time to get to it – that is not my Dad’s fault. You have lost my respect and I am disappointed that you are called carers. Don’t bother coming to work if you cannot provide good care and support.
However, the poor care both in hospital and at home my Dad has had doesn’t mean I am turning my back on promoting care. I still value all the other people within care that do an amazing job. So finally thank you to all you that do a GOOD job who do give up their time and sometimes time that is unpaid.
Blogging does not seem to come overly natural to me but I still want to promote care and promote discussion/debate. I feel the need to ensure people realise that care work is valued and should be a chosen career .
In the about me I talk about my career within the care field but I feel my caring commenced long before I got a job in care. I was always looking for someone to look after even as a child. It was who I was, I remember being asked at 14 in school about what I wished to do when ‘I grow up’ (not sure I have grown up yet). My response even then was not met with encouragement as I said I want to be a social worker or a probation officer (none of which I am ). Thing is I was not overly academic as you may notice with my poor grammar (apologies). So I wasn’t encouraged I don’t believe.
However when it came to work experience I was sent to the care home next door to where I lived. I can still remember my first day as a 15 year old going in to the home, I remember even then the home had an odour that should have been dealt with, there was not as many safety protocols in place and inspections that there are now (or maybe there was but just not followed). I was asked during this work experience to support someone to the toilet, it was a man who was around 80 I was left to take him to the toilet on my own. I was terrified but I knew instinctively that I could not allow him to feel he was a burden and that I was nervous. I knew I had to pretend it was OK, I got on with it and can still remember the first sight of a man naked from waste down. However, it didn’t stop me from deciding to do some kind of care work. What it did make me realise is that I would never do what this home did, I would never leave someone inexperienced, untrained to do such intimate support.
Care I think was a natural career for me to choose, I liked listening and giving advice to people I met who were going through difficult times, I liked babysitting, I enjoyed just helping I felt I was achieving something each time I was able to help.
Once I completed school I went to college, I was interviewed for the course ‘Preliminary Certificate in Social Care’ the tutor a glamorous lady asked me what I wanted to do and at that moment I said ‘until I do the course I don’t think I fully know’. Mum had come with me and she said to my mum ‘that was one of the most grown up answers I’ve heard’.
I went through 2 years at college (interesting time) completed GCSE and gained some good grades. I knew then I still wanted to try to become a social carer. I applied for a number of jobs in all different areas (none of them near home). I eventually got a job at a company in Cambridge working with people with Learning difficulties. It was the first step in a career that now spans 30 years. Care is a career it really is and its worth doing.
My career in care has been interesting, colourful, noisy, hard, scary, sad but mainly has been my choice it has been my passion. I want more people to know that it’s one of the best but hardest jobs you can do. It’s not valued like it should be and certainly the pay is not the best but its a career it really is. I would still choose this career all over again.
My journey to where I am now:
Senior support worker
Regional Manager of Training provider
So I will continue to try and blog about care, my family, my dad (AKA Grumpy). I will continue to highlight the good that is out there within care. I will also share when there is not so good care but will hopefully remind people that we can make it good.
Its a quick blog today to try to get myself back to it. I had 5 draft blogs that I have deleted that never came to the page. I now have added 2 more drafts but luckily today I have at least published one. If you are reading this please comment, share, add what you believe care means to you. Most of all if your reading this and you are thinking of a career and have the attributes to be part of care then feel free to check out some of the links.
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!
Morning everyone, another week in the life of Attention to Care. After posting about recruitment and retention of staff within care I decided to just write a little more about Attention to Care and what my aim is.
Attention to care as I mentioned in previous post is my own company which is not LTD at this point in time I am just a sole trader. I set it up as I lost a little faith in being employed by others. I felt I lacked control in my life and I was losing who I was, which then meant I lost a little of what I was aiming to achieve. Care has been my life since I was 16 I went to college and did a qualification called Preliminary Certificate in Social Care. It was a good course that then gained me a job within Cambridgeshire Mencap where I worked on and off for 23 years. I then as previously explained went on to Assessing and training. I felt the needed to try and give others the opportunity to learn and develop to then progress. (sorry digressing)
I worked for a number of years with 2 large training providers and learnt a lot but also learnt that there is a push for bums on seats not on quality. Sadly this is true and the fact that we talk about individual learning as far as my experience was there was not individual learning just generic. I ended up having a full break for 6 months and then went to a college (not the best decision) realising that it was really not for me I need a new challenge so luckily I kept in touch with a colleague (friend) and he got me some freelance work as an assessor. 2 years later still dabble in assessing have now about 9 learners. However, my main goal is to build the training in house at care companies which I am loving. I can show my passion and be honest with people about care and all its wonderful colours and sounds.
Attention to Care was set up last year and the aim of Attention to Care is to train in care companies but also to use Facebook to promote care in general. To give care a face, a visibility, a value. I do not wear rose coloured spectacles I know the reality within care and know when things go wrong they can go gravely wrong. However, I know how great care can be across all companies. I can meet people who are amazing, who value people who promote fully the 6 C’s (care, compassion, commitment, courage, communication and competency) people that wants to make some difference whether that is leaving a person with a smile after they have supported them or supported someone to be independent.
So if we commence sharing the good stories and valuing the care staff and management then I am sure we can commencing fixing a system that seems a little broken at the moment. If I can be part of that fix then the aim of Attention to Care will have been fulfilled. Its not a lot to ask that we look at care and what people do on a daily basis to support our most vulnerable in society. If we look at the value it has for those that are being cared for then we can see how vital it is to do something to make it what it needs to be. Care needs to have a value, it needs to be about a career choice it needs to be a first choice in options for our children (not a throw away subject).
So the more I spout off , communicate and just generally speak up then hopefully someone will read and help me with the aim then share and like. That’s the aim to show care as something worthwhile.
So if like a soap box, bandwagon or just generally like sound of own voice (Like me) then please read, like, comment and share. Join a community to value care.
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.
Untitled today is about not being able to put my finger on what I wish to share but knowing I need to at least try. I think I have lost the the WHY for this site and so I am in the process of deciding. Until then I may not have a lot to post to share.
I could share the trials of my mother and father which have been interesting but is that what my blog was for? Or do I need to re-vamp altogether if so what do I want to gain from the blogging? I don’t want to continue to feel that my blog is untitled but at present it is and I now need to decide.
These are my ideas:
Blog soley about care and what experiences I have and other have.
Blog for resource sharing?
Blog that incoropates the journey we are going to go on with my father (AKA Grumpy)/
Blog to look at training and assessing within care.
Or do I make it a mixture and do something like a month on each?
Also I need to find out my WHY!
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?