Grumpy’s Donation to Science (and cremation)

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. 69939097_563219157755524_8512856593509908480_n

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. 69556012_679307149235639_869669833069821952_n

 

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Loss and what you can expect!

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.

What gets people to read?

What gets people to read is my question today?

I am thinking of what makes me read something and I am struggling to know what. Here are some of what gets me to read:

  • the intrigue that gets me looking further, the expectation that it’s going to be a SURPRISE!
  • the title that gives me a question to be answered and only can be answered if I continue to read.
  • the expectation of what something is going teach me
  • the fear if I don’t read I will miss out on something that can help me
  • the assumption that I know what something is going to include so I make an informed choice
  • the lack of understanding of a title so it’s a MUST read to see if it’s really what it says on the tin (title)
  • I also like a title that may hold a conspiracy theory
  • lastly I choose if I think I may have an opinion of the topic, if it’s near to my passion.

These are some of the reasons I read certain things and not others. What are your reasons you read articles, posts, tweets or books?

 

Social Care and the NHS…

For the last few days I have been ‘tweeting’ I am new to this and just wanted to be more pro-active. I have had a good time just commenting and retweeting tweets until today. I know social media is known as a bit of a harsh place to be at times. However, being part of the care industry and training both nurses and carers I think it is important to be fair when posting about social care and the NHS. I made a comment that it is not only social care that has the poor care but so does the NHS and the response from a particular person was rather harsh. Telling me that NHS is superior and telling me ALL social care providers are rotten (not word for word but that the tone of the comments).

I am not disrespecting the NHS I am grateful for it but when will people understand bad care happens in the NHS to. We as a family have witness this on a number of occasions (not just once). It seems everyone is quick to speak negatively about social care both home care and care homes. Don’t get me wrong I have been honest about our experience with home care also but lets ensure we are not constantly thinking the NHS is superior to everything. It has it’s faults as does social care.

Social care is so devalued and until we value it more we will always have people saying all social care providers are bad and all NHS is superior.

There are many things wrong and one of the things wrong is providers not being held responsible or monitored properly by local authorities. Recruitment of managers, recruitment of care workers not appropriately done. However, the issues are similar within the NHS as well and we should not forget this. The lack of monitoring of how a ward is run as I just don’t get that in the same hospital wards can be so different.

We must push care/nursing/healthcare as a chosen career so we need to show that society and politicians value it . Time we pushed the best practice that is out there, time we were more constructive with our concerns, time to be a solution so if you have a concern do speak up regardless of whether it’s the NHS or not.  Local authorities and CQC time to really understand that one persons experience is important to check out. Time we had zero tolerance of poor practice and care. We have the 6 C’s lets make sure they are followed. Stop thinking all are bad there are so many good providers, hospitals, carers/nurses out there. Stop tarring all with the same brush.

I don’t expect all to agree and I don’t mind if you disagree but once I replied to comments today the person sent me a very harsh reply and placed a screen shot of may profile up. It felt like I was being bullied into shutting up. Sadly my confidence on social media is still not up there so I deleted and blocked the person. I am not about airing my laundry in public. I am about being fair. I am about voicing an opinion. I am about learning from others. I will continue of Twitter but it has left an uncomfortable taste in my mouth of how people can be. Kindness and respect cost nothing.

Innovation and Social care :( :)

Innovation is a great thing it really is and I am all for change and progression. On reading a few months ago about the Alexa assisting within loneliness for people who are in care homes or home care I was sceptical in the idea that is was going to relieve pressure on carers. I was sceptical as the outreaching idea had made suggestions that it was going to be doing task carer do and so less time to be with the person, this is where I then get very frustrated about as replacing human contact will never be the best thing to do ever. It may alleviate loneliness in the sense when the carers are not there that it can be set to read or play music but not instead of carers please.  It could also mean that the individual could raise the alarm if they fall if they are able to. Or to call if there is a potential intruder, also, if get a camera and an Alexa show then they can see who is at the door. So there are uses but not to replace care. I know personally that actually the Alexa has been a great thing for my mum. I got her an Alexa show and she loves it and it has really given her something to do but also, she can call me on it and she can carry on doing things as she chats and she has. I believe it great for her as a carer for her husband.

Then this morning I read an article about a robot being heard in parliament and the article stated ‘robot to care for nations elderly population’. I understand cuts and innovation but come on please again social care is been undervalued and stating in some sense (I know not fully) that a robot can replace a human to care for people. It doesn’t just talk about loneliness it talks about caring. It got me thinking about the people that are most vulnerable that require carers/support workers etc, some of the people we are talking about have, dementia, mental health problems which means sometimes they are hallucinating which can you imagine having a robot around your home when you are in a crisis with your mental health conditions. How scary. It mentions care homes, well most care homes will have people with Dementia and I am sorry but if you work in care you know how residents can react when they don’t recognise a human or when they have a piece of equipment brought to them.

I am frustrated I really am and that’s because we are looking at cheapest option (I know money is tight) and already politicians, society do not value the work social care does and here we are lets use robots. If we are doing this in social care then why not replace teachers, doctors receptionists or hospital porters with robots? Why not replace other frontline staff? Lets not just focus on care work and the social care industry. I am sure someone will say they are not but to me this is what it feels like. Innovation is great and I am still interested in reading more and seeing what more of the ideas they have but remember people first always.

Please feel free to debate.

Dad (AKA grumpy) Our families Dementia journey part 2, 3 and maybe 4

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.3FBD670A-D848-4029-A4E9-9C89D529F51D

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.Next 1Start 2

 

 

 

Dad (AKA grumpy) Our families Dementia journey

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).

 

Blog or not to blog does the swearing and risky blogs get more traffic?

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.

Just a quick blog Dementia related

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

 

Care/Career

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:

Support worker

Senior support worker

Deputy manager

Registered Manager

Trainer Assessor

Regional Manager of Training provider

To Self Employed in House Trainer (this was my goal and I have been lucky to achieve). 

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.