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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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

 

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.

 

“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.

Quality of Life (what does this mean)?

I was in the process of writing my blogs when a question from a conversation I had had with my mother that morning  crossed my mind.

That question was – Quality of life, what does it mean to people?

During the conversation with my mother we spoke about my fathers’ current health and his recovery after a recent bout of pneumonia, which then led to diagnosis of emphysema. I should add at this stage that he has also got Alzheimer’s.

Currently he is taking a medication for his Alzheimer’s, as well as steroids to help his lungs. This combination of medicine, my mother has explained to me, has made my father more awake, engaged in TV and films and less confused.

However, she is concerned that since today is the last day of his steroids, he will decline again and she will end up rushing back and forth to hospital.

So I said then maybe they should look at giving the steroids full time if he does go downhill; as quality of life is so important.

My family knows that my dad will deteriorate, and know what to expect. We will ensure that his choice are respected, and that we all love him as we always have.

Yet, whilst we must ensure that he has quality of life, we must never forget that my mother (his main carer) is entitled to her own quality of life.

Of course she is happy he seems much more aware and awake, but it has  impacted on  her ‘quiet time’ as she calls it. In the past she would assist dad to bed and then have time for herself to surf the net, embarrass us on Facebook and to watch ‘Hollyoaks’ but at the moment she isn’t having that. She confided in me that she was feeling Guilty about feeling Selfish for wanting her ‘quiet time’

But do you know what she isn’t selfish and she has every right to have a Quality of life also.

As a loving, and caring, carer, who looks after her Husband each and every hour, of each and everyday. She should not feel selfish, if her ‘quite time’ is disturbed.

It’s this  ‘quite time’ that enables her to recharge her batteries, have a bit of ‘Me Time’, and is vital for her own well being, health and mental health.

It is critically important that she is able to communicate her thoughts and feelings and not be judged, but instead be listened to and supported.

I believe quality of life is key to my dads and mums continued happiness. My mum will ensure my dads quality of life, my family must support and listen to my mother to make sure that she has her.

That support is vital to all carers in this world.

Don’t forget to care for the carer. Don’t let them silently blend into the background.

So in conclusion I feel quality of life to me is about:

• Maintaining identity: ‘See who I am!’
• Sharing decision-making: ‘Involve me!’
• Creating community: ‘Connect with me!’

For both the person who is being cared for and the carer

Let me know what you think? Share your understanding please.

Maxine

 

 

 

Attention to Care

So I have done it, I have commenced my own business called Attention to Care which is a Health and Social Care training company based in Cambridgeshire area.

I have a lovely website that is still in the process of being changed and altered, a face book page and business cards on the way (second time lucky as I missed the ‘n’ off).

So why?

Well I have worked within care for 28 years in some role whether support worker, manager or trainer/assessor I still see approaches that could potentially place people at risk. So I want to educate, value and nurture the carers/managers/employers to enable them to provide the ‘best’ service they can to vulnerable people. The way I know I can do that is deliver, bespoke and best quality training I possibly can.

Its been a while since I posted and a lot has happened, my father has been unwell and recently diagnosed with Alzheimer’s and Emphysema. Which is rather a big deal and I am very aware that even though I deliver Dementia Training that I have to be just a daughter and sister when speaking to my family as I don’t want to be the one that has to inform them of everything as otherwise I believe it changes my relationship. Don’t think though that I don’t talk about it and support my family with information they need I just don’t speak like I am training.

This is a brief blog but will try to now get more completed and find resources to share on my blogs to try to support you carers out there.

Please check out my site and please share.

http://attentiontocare.co.uk/

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

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