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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Pull up a chair and lets talk

I’m sat here on a bank holiday weekend feeling somewhat sorry for myself (have a bad back). I have gone through social media seen the usual posts that raise my blood pressure and seen the posts that make me smile and make me thoughtful. I have cleaned (a little), moaned at my husband (waiting to moan at the 14 year child who still sleeps). I have thought about doing some work (but I should be allowed a day off even if I am self employed). I have gone back to reading (Where Memories Go) and as I was reading it got me thinking (this would worry my husband as me thinking causes stress).

It got me thinking of when I thought I would write a book, I did commence ‘Pull up a Chair’ but can’t find it anywhere (feel sad about that). I am asking myself today if I should try and start again? Some of you will know ‘pull up a chair’ was a title my friend Valerie used to say and that it would be a no holes barred self help book but it would be blunt and no ‘oh woe be me’ type of self help. I adapted it to more of a about my life book which would obviously have Valerie within it. Over the past year things have changed in our family but I now question do I scrap it fully or do I try something new. I am not the most articulate in writing so not sure I could actually write a book.

However, today has me thinking as I sit here feeling sorry for myself. Valerie would not be happy she would give me a course in ‘get the f@ck over it’.

Blogging has become less of late I don’t really know how to make myself more visible. I still want to blog about care but not sure its the most fashionable subject or glamorous. However, I will keep trying.

Happy Sunday All and if feeling sorry for yourself then ‘Pull up a Chair’ and talk. cropped-etchings-and-roses-ivory-wallpaper_yellow-chair1.jpg

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

How’s it been?

It’s a question I ask without not quite knowing the answer. Christmas came and went and now we approach the dawning of a new year. But how has 2017 been.

Well it’s had lots of rollercoaster moments which have tested my strength and other people’s strength. In the world at present things are just confusing and challenging. Not that I am going to get into politics but some decisions have been astounding and damn right wrong.

Personally I have gone through an array of emotions but I value everyone one of them as it’s me, it’s what makes me me. My family have had some trying time with my fathers health and the worry that brings, a diagnosis of Alzheimer’s and continuing health issues.

Then I big high occurred I got married to a wonderful man, had the most magical day and shared it with so many people. So as you can see the extreme of emotions have been vast.

There was so much more to this year, a new baby entered our family, we have a survivor of breast cancer in our family.

We have shared many laughs and lots of tears some tears have been happy, some have been with worry. What this year gave to all of us was more strength as we all got through it we have all grown knowing that futures can be unpredictable but if we join hands and go into the future together strong then we can overcome the rollercoaster of emotions. As when one falters another can pick us up or can take the reigns for a while. It’s not all about dealing with things alone it’s about knowing when you need help.

So I will now look at 2018 and focus of growing attention to care  I will look at the future and ensure I spend time appreciating things and time. So please look at our 2017 with a few days to go. I appreciate every person whether in these photos or not. There are people here that I see less but value so much. Just please enjoy the rogues gallery.

 

Why oh bloody why

Come on let’s bloody stop this. Why oh why are we allowing our most precious/vulnerable people to be placed in poor care homes. For those amazing carers (there will be some in these homes) that work in these homes that lights are flickering please speak up and stand tall and try to use your kindness elsewhere or to help make these homes better. CQC and the councils use these good carers to make the difference. Sort out the management and the owners make them stand up and explain publicly as to why they are failing! Make them explain. Why are they not in public at a public meeting telling us their reason. why they are failing. How can we accept failing homes.

My anger is justified as these care homes can access funding and support. Yes there are cuts but there are ways of not affecting care there really is. We are suppose to care for our most vulnerable, bloody hell lets get it right. Come on society please value care, the government stop cutting things for the most vulnerable.

 

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Resolutions!! WHY and WHAT FOR

Why do people make resolutions what are they for? Is it to make them feel they have a plan of action or is it to make the world a better place?

I am always baffled by the making of a new years resolutions as surely when you break them you feel like you failed and this will surely do the opposite of what a resolution is made for.

As I see it instead of a resolution write a bucker list of possibilities not over expectations and not set in concrete. My dear friend Valerie (not longer with us) used to pin on her fridge her aims and possibilities for the year ahead which we always joked about. However, after yesterday and my fiancée mentioning that we should do a list I have decided to start our own. The list will consist of things we hope to buy, things we hope to do, improvements we hope to complete and personal well-being.

First job on the list completed and after clearing out the cupboard I am going to utilise the container that I found with loose change in it and commence the second item on the list and that is to add to this container after each day with any loose change in my purse.

So I forego tradition resolution and opt for stealing Valerie’s idea and do a year of possibilities. Oh and another item to be added will be a Wedding date and a theme so as my pinterest doesn’t look like I am having a breakdown of ideas

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Take a moment to appreciate Autumn x

Well its Autumn here and I love the colours you find when walking. Love the warmth feeling it makes you feel even if its a chilly day. Its just a lovely season. Everyone should take a moment to take a wander through the leaves that have fallen from the trees, Hearing the crisps leaves beneath your feet. Take a look at the colours and the patterns mapped out on the leaves, look up to see the leaves hanging on to the tree or as they fall watch them glide to the ground. Just take a moment. The news can be dark and miserable, with politicians making decisions that affect so many and I know this will not fix things but for a moment you will see beauty and it may just give you a smile for a while.  P1120230 P1120174P1120169P1120123 P1120120 P1120356P1120205 P1120193 P1120185 P1120407 P1120410 P1120344 P1120231

Professor Winston is really all that.

Wow! what a great day today I have had at work, well not exactly at work, at a conference with an amazing guest Professor Winston. He was simply brilliant, inspiring and just simply engaging. What he had to say about health care was spot on and that there is a way to go to get it right and we can not really plan to what will happen. Yes people are living longer and therefore more care is going to be required. One of the most heart wrenching but comforting things he shared was that there is proof that someone who maybe in a coma or lost due to another condition can seemingly hear you. So those words you say have to be caring, loving, nurturing and encouraging when talking to someone who is silent.

So as I see it, time is now to get care right, to improve care for all, to nurture potential that is out there and value the people who are caring and supporting our most very vulnerable people (our loved ones). Yes! I hear the cry there are many carers who do an amazing job but why are you not telling people about it and sharing these good news stories. The requirements need to be changed to not have people just relevantly trained we need people properly trained, from 16 onwards to provide care. Soft skills (how to communicate, how to work as team and what values are) are just as important as knowing how to administer medication for one example. I am not saying you need a degree but I am saying you need some formal training to support people. You need to show you can support someone in a way they want to be cared for or supported. Lets hear peoples needs and lets observe what they want.

The other day I wrote a poem but after today I changed it. I hope it resonates with people (I am not a poet or writer so please bare with).

Please see me

When you look at me

What do you see?

When you talk to me

What do you hear?

Can you see me?

Can you hear me?

All I ask is,

See me

Hear me

Don’t ignore me

Know that what you say I can hear

I maybe silent but I am here.

I am not who I was

I am not who I thought I was

I am lost

I am hidden

So I ask you

Please look at me

Please see me

Please talk to me

I wish I could answer.

Please listen hard

Please seek me out, I am here.

Please see past my silence

See past the shell

See me for who I was and not just who I am now.

Care and what does is mean?

Care Definition:

The provision of what is necessary for the health, welfare, maintenance, and protection of someone or something:the care of the elderly, the child is in the care of her grandparents healthcare

 

For me care is about enabling, supporting, reassuring and protecting people. I know there are lots of amazing carers out there who do a tireless job (some not even seeing it as a job).

My mother cares for my father she puts all her energy and love into ensuring they have a good life together enabling and supporting him to enjoy every aspect of life by making their time together full of experiences.She values every moment she has and never ever looks back.

I have 2 friends who care for their boys who have difficulties and do it with warm hearts and open minds, not expecting the world to see them  but I see them both, their time is filled with caring for these boys who need their full attention but never do they regret being there for them or regret having them just as they are.

Me well my job was to care, within the care sector supporting individuals with Learning disabilities to fulfil what they needed or wanted within their lives, not always positive moments (at times a little shocking) but mainly moments that will stay with me, moments of achievement and rewards, moments of sadness and joy, moments that would make your hair curl but never ever did I regret my choice of career. I actually used to love my job even though it was full on and there was a lot of battles that I tried to fight on their behalf (some we won as a team).  What I worry about is that now in the job I do I don’t see many people who have the same ethos or compassion about supporting people out there who are vulnerable, yes there are some who are out there who love their job and doing amazingly but surely this should not be a few it should be most.

So I ask you what is care to you and how can we nurture new carers to give the BEST they can to people who need our BEST. Is it about qualification as I don’t think it is.

 

It was a real DAY OFF! :)

Well for a number of years my day off would consist of working to catch up but today I actually had a day off.  I relaxed in bed until after 9 am (this does not happen often), I got up watched TV, which included the Great British Bake off. Listened to smooth radio whilst relaxed in the bath (no longer a gorilla 🙂 ). Went for a walk along the riverside and enjoyed my hobby of photography. Then back home to yet again to relax and listen to music. Days off are great when you actually don’t work. So a word to all you people who worry about targets, deadlines and getting behind, just stop and enjoy the day, take a moment to do your hobby or interest or just stay in bed.

Value the DAY OFF!P1110473 (2) P1110485 (2) P1110492 (2) P1110493 (2) P1110496 (2)