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).

 

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I have been quiet!

Me and Mental Wellbeing

Sometimes you just gets carried away and you forget to take a moment to just stop and do something as simple as sitting in the garden. At present I am working mainly doing  “in house training”. On the plus side it is work (which if fantastic) on the flip side it does mean long days and quite a bit of additional travelling, which means I’ve not had time to stop, think and contemplate.  Even on my trip to Brugge texts and calls were coming into my mobile and I was thinking abut work; which was not ideal

Currently, I have a number of new blog ideas and will try to get these down and posted soon. However, for now I am sat here in the garden preparing for next week, compiling a powerpoint for Mental Health Awareness training. Which has got me thinking  and I decided to stop for a moment and blog.

Today while looking on information and refreshing my knowledge on Mental Health I was able to think of my own Mental Wellbeing (its not something I talk about a lot  or even try to think about to much).

Like many people, I can say that periods of my life has challenged my mental wellbeing. While researching the prevalence of mental health I realised that more people develop mental health issues at a younger age.  The amount of young people that suffer anxiety and depression is quite worrying. However, when I think back I realise that I suffered anxiety as a youngster, its just that the name was not used or the awareness of Mental Health was not what it is now.

Mental Health unfortunately did follow me into adulthood and its only now I admit what it is, I used to just ignore it and would never ever admit to labelling how I was feeling (not sure why but a hidden illness comes to mind). Some of how I felt was about loss of control and fear of what might happen to my family or friends and then it would build so I would feel anxious.

I am lucky I have a supportive husband who has admitted that he is still learning about Mental Health, and initially did not understand why I react to the simplest of issues in the way I did, and seemly blow them out of all proportion. Now though, he does and he helps me to structure things and take control which has helped. This has allowed me to manage my mental wellbeing to a degree .

I now recognise and am more aware of times in my life, when my Mental Well being has been challenged and I am trying to be more open and honest about my feeling and not hiding them away for fear of judgement and what might happen.(Work in progress)

Things that have helped;IMG_0230.JPG

  • Taking control of my financial situation (thanks to my husband) as now I am not as afraid about money as I used to be.
  • Autonomy within my career which has allowed me control (well some control).
  • Trying to open up a little more to my husband.
  • Being aware that I am not in a good place and trying to not ignore.
  • Trying to organise my life a little more.
  • Enjoying simple things in life.
  • Sitting in the garden and just focussing on whats important.

Don’t get me wrong this is not a quick fix , but it has helped me greatly and given me peace of mind. I am hopeful that as time goes on things will continue to progress and I will continue to work on myself. IMG_0250.JPG

I sit here now and feel good and feel happy I can take moments like this (yes I am working but working outside has a different feeling). I wouldn’t want anyone to think that I am suffering I am not I am just sharing which I think is a massive step. Hiding is not the answer, feeling embarrassed is not a feeling we should feel, being scared to admit how we feel today is not allowing us to heal.

So today I am good but hey tomorrow it might be different. However, as I say make the most of the good days and feel alive as life will still be there and will still need you to breath. Just stop take a moment, look at the simple things like our cat Kobe needing attention from the most caring man I know.

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Don’t forget to take pleasure in the simplest of things because that will give you joy and joy is the greatest defence against feeling low. Stay safe, speak up and do not hide away.

 

Maxine

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.

“OUR MOTHER, GRANDMOTHER”

3FBD670A-D848-4029-A4E9-9C89D529F51DIf 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.

Time to have a walk and go back to taking photos

Hello Sunday

Pleased to have been and enjoyed a walk aroung Anglesey Abbey, loving the colours that are still vibrant and some surprising flowers still hanging in there but also some that are just sprouting. Loved the walk still no closer to a decision on the blog but some lovely chances to take a few photos.

Hope you enjoy browsing.

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.

Colours and sounds of a Care worker :)

PART 1 (not sure there is a part 2)

It came into my head tonight that there must be a tail or two that care workers could tell us that will shed light on the fun it can be to be a carer. Yes it’s a serious job (I am well aware), but if like me, there has been some funny/amusing/amazing/extraordinary experiences that within care then maybe we should share. It’s just a thought. Of course no identifiable information that would break ‘data protection’ or ‘confidentiality’ but stories that may bring a wry smile to your face or did bring a rye smile maybe even a loud laugh.

My first day as a support worker (18 just left home) gave me a shock, having a lady ask me outright if I had a Fanny and the proceeded to say I have ‘see’. Oh and yes she showed me. How I managed to be brave enough to stay I do not know but I did. It still brings a wry smile to me face when I think of her that first moment.

Not long after this I was told I would need to practice ducking and I just laughed at that comment not understanding the real implications until, a glass and a table came across the room then I realised ducking was a skill I mastered very quickly. I found myself drawn to the services users who everyone seemed to want to avoid as they were deemed as ‘challenging’ and they were but finding out about the person and learning the triggers and reasons behind the frustration helped enormously.  So I would watch and observe and move very quickly when another support worker went in feet first with no thought for the persons feelings. They soon learnt to duck. Sadly 28 years ago there was not  much training or clear understanding. However, I now enjoy being able to share my knowledge in supporting positive behaviours.

If you could see care in colour then below is what it would be, unique, bright and sometimes explosive. It’s all the colours of  the rainbow and more.

colour-splash-1

 

If you heard it in a sound then it would be all the chords, notes you can think of going of at once.

sound

So what I ask is that you focus on these stories of joy, amusement, uniqueness and inclusion and share them with respect. Remember on the harder days it’s going to be a better day soon. Think of the colours, think of the sounds and then remember your going home you are just there for a moment in some of the people’s lives so make that moment mean something. Make that time be colourful, make the smile as bright as you can and focus on what matters.

Please feel free to share your stories, please feel free to ask advice and feel free to be unique. YOU ALL MATTER 🙂

Care or Fits?

Its a funny as a person who worked in care generally all my adult life and now work as an assessor/trainer in Health and Social Care, I sometimes think where is the care. Its strange but there are people that are working within care because ‘it fits’. Is this really the reason we want people looking after our loved ones, for me I am not sure.

I’ve questioned this before and as much I don’t want people to choose working in care for this reason solely it is a reason and justified ‘fits’ means ‘of a suitable quality, standard, or type to meet the required purpose’ so actually not a bad definition. We all have life’s and we all have people we may have to take responsibility for and working in an industry that can allow us to be flexible surely is an OK reason to work in care. Its more suitable or acceptable to use the above words of I work in care to care for people. Its sounds all rose coloured and pretty don’t you think?

Now this is where I want to bring in Care and the meaning of care ‘he provision of what is necessary for the health, welfare, maintenance, and protection of someone or something’ so in actual fact not massively far removed from ‘fits’. I can get by thinking when someone says fits are they thinking of quality (see definition) surely they are! Also ‘required purpose’ which could be to deliver best practice care.

Sadly and here I go fits is just not for me. When I interview someone please don’t tell me you reason for applying is to say it fits with childcare and that’s your reason. I know its important but surely the reason should be about the practice of care. I meet carers within my job and at present I have to say I am lucky to have a great group of Learners who yes need it to ‘fit’ but through that I can see they are choosing ‘care’ to provide a service that is of quality.

So please think of your reason for going into the care industry, public opinion maybe that its ‘wiping and cleaning people’ but I promise you its so much more. Yes it can ‘fit’ but its so much more then that, it should be an honour to provide support to someone who can’t or struggles to complete everyday task. Its about well being, its about people, its about progress, rehabilitation, its about end of life. So please think long and hard before choosing care as a career. Please don’t choose it just because you can.care-young-and-old

Time and committment

What can I say I’ve neglected my blog, just seems less time to think and write. However, have been to Scotland and then to my very first festival. Also lots of work in the garden at weekends but clearly not in my 20’s or even 30’s for that matter as I ache.

So Scotland was amazing, beautiful as always I love it. One day we will be moving to Scotland but for now its enough to visit just wish time would allow us more visits.

The festival not even sure what to say, I last 45 years not going to a festival and then I went. Well it was great fun but camping is not for me. Embrace were fabulous and it was a nice surprise meeting the stars of Emmerdale. Paddy we loved him.

Then the gardening well lets just say we have done wonders and we still have more to do, lots of trips to the tip.

Save the dates have nearly all gone out. Wedding 2017!

Now to work well Assessing is good, my contact with some lovely learners make it easier to do my job. As usual paperwork and politics always have a negative baring on how much you enjoy your role. Still for me if I can impart one piece of information to enable someone to do their job better and then ultimately the care should be better.

No I am going to set myself a task that by the end of the year I will have completed a well being week. I want to do this and was suppose to do it in August but time and other commitments placed it on a back burner. What I ask myself is why did I not find the time? I placed well-being second and I need to address the balance.

So I will do and I will ask for stories to be shared regarding well being and mental health. Trying to lift the darkness on being able to talk about suicide is my aim.

So until then hope all are well and those carers out there are keeping themselves well.

Love long love strong and hold tight things sometimes will seem unbearable but please talk, chat, open up, share and most of all if your a person who is been told ‘LISTEN’