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

 

 

 

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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).

 

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

 

Memories and the making of them

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!30922044_10157320885744622_2107416334_o

January is Over

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:

Care

Compassion

Competence

Courage

Communication

Comittment 

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.

Book time

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.

 

Grumpies Groupies (WHY OH WHY)

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

Good bye 2016. Hello 2017

I am sure there are going to be a lot of these predictable new years posts but it has to be done and it has to be done well.

So here goes:

2016 what did you give to me.

January you gave me a graduate as my gorgeous daughter graduated from Derby University. A very proud moment.jan

February was a quiet month but still but I got to sea seals on the beach in Norfolk with my wonderful friend ‘Kinky’ or Kate if you need her real name.

March was a busy time just getting out and about and meeting up with friends.The mask picture was a game of pin the cucumber on the hunk (you had to be there).

April was all about the gardening and family time. The big garden was commenced and a pop to Lowerstoft to see mum and dad.

May the gardening became a massive build or should I say demolition, poor Alan ended up on his back with me giggling. Love continued.

June was all about the queens birthday and a mission to try and get the community together which was not a great success but we had great time with the usual bunch of people.

July was about big weekend, time alone with Cameron in Norfolk, checking out the botanic gardens to see where we will have our wedding photos and then barbecue in the new look garden.

August was a trip to Scotland with some great friends who fell in love with the scenery. We had an amazing week,lucky with the weather and lovely place to stay. It was also the month when cucumbers and tomatoes grew beautifully.

September was a first for me going to my very first festival and then meeting Paddy of Emerdale. The parents visiting which was lovely and I got my heron photo. It was a good month. There was much sadness in September also which a number of my friends had to deal with and they dealt with their sadness with such dignity and strength.

October was a charity event time for breast cancer when planning it I was just thinking back at Valerie the real founder of the title to my blog but then how would I have known it would then be news that would be hard for all with my niece being diagnosed with breast cancer. It was a great night and every penny will count. I then had  a visit to bakewell with my lovely friend and her children.

November was a month where things were a little quieter but with a great night thrown in at Gin of the Rocks. Night at the museum and more gardening for Alan.

 

Now we come to December where we had the best time and the most fun just spending this month with family and friends. So no we have got to 31/12/16 a little poorly so no going out but what I do have is 2017 to look forward to and I can’t wait.

Good bye 2016 and welcome with bells on 2017. We have a wedding, more babies due and people to fight hard to ensure they get well. So positive vibes required and celebrations to be focused on.

Happiness, Health and Love I wish all.

Story of a Care worker

Care is amazing but hard please value the ones who do the job.

Over the years I have met so many care workers so great, exceptional, amazing, passionate, driven to provide the best of care and then the ones that are not all of the previous comments. Carers from all over the world who are committed to supporting our most vulnerable, yes I am not blinkered to the poor care out there but its getting better and we are more vocal at the poor care now.

So many experiences I have been lucky to have had,  from supporting independence to enabling someone to die at home with their loved ones. Every moment just as important as another.

I have been through the saddest of time and then the times that has been utter joy. Each experience has left a mark on me and has made me who I am today when I go and do assessing/training for people who work in care. I focus on my learning through experience and try to impart some experience on others. I am always passionate   about care because this is one of the most important industry you could work in.

I think back at times and remember by first day of walking into a Big House in the Village of Milton in Cambridge (Edmund House), it was an old building which would be classed as an institute but Mencap were working hard to alter the care/support for people. I came at a time that I was able to be part of that. Watching the development of a more independent and inclusive provision. I was 18 just finished college in Scunthorpe and thrown headlong into the world of care. IT WAS A MASSIVE LIFE CHANGING EXPERIENCE!!!

I have met along the way people who have made an impact on me some for the good and some for the wrong reasons. However, I love the care world, I have faith in the care world, regardless of society not respecting or noticing the hard work carers do. We pay the minimum wage to the people who are caring for our most vulnerable but they do it in spite of that.

I want to continue to try to value and get others to value care and therefore I may change my page to something more inclusive. I have not been able to have the impact I wanted and now it back to the drawing board to think about how I get care out there as a positive. I want a community who are not afraid to share their stories and to share the advice so time for change I think.

Care needs a voice and I may try to get it one.

So please come on and pull up a chair and talk about care. Talk about everything you want to. Open the can and lets not place the lid back on lets just share our experiences and stories that will make people smile and see the positives.

Scary times being OUT and as a definite IN I worry for care, training and all the people who care regardless of what country you are from you do a vital job.

Take this as a bloody big thank you from me. pooh