Happiness and Grief

When I smile does is mean I have forgotten you

When I laugh does it mean I’ve moved on

When I cry does it mean I will not stop

When my sadness is painted over my face does it mean people think I am miserable

The moments I forget your gone does it mean I am in denial

Happiness and grief mingle together

The patterns are intertwined

You will be one then the other.

Moments of grief that pounce upon you with no warning

The little reminders of them fleetingly cloud your thoughts

The ball in the face moment reminding you they are gone

Then happiness takes over and you smile

You smile with joy with no tinge of sadness

You laugh from your tummy, loud and free

But then the smile changes as you are reminded of their smile

The emotions are rapid, senseless and varied

But they are what you feel, they are your way of grieving

They will bring you comfort in time and the sadness can be watered down

The grief will be there but the joy of knowing them will give comfort

Happiness and grief go hand in hand but be sure to smile and laugh be sure to remember

How you feel is you and no one can tell you not to feel

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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.

Wishing that sometimes We didn’t know what We know!!

Decided that sometimes knowledge of something can make you know too much.

I am sure this sounds like I have possibly lost the plot but I have worked in care for 30 years. Supporting people to develop skills, keep skills and to be cared for through the end of life process.

Some people would think knowing information or knowing what’s to come is a good thing. However, not always as at the moment it isn’t. Knowing the progression within Dementia and knowing the end of life process means, I know what my dad is possibly going to go through. As a trainer in social care I stand each month and teach about dementia awareness which has an impact on me as I am actually talking about what might happen to my dad, over and over (I love my job but it can be hard when going through something).

Knowledge and experience

As my dad progresses through the dementia journey I struggle to get those images out of my head of people I have met, cared for through this incredibly harsh disease. I see the people screaming as they are being cared for and shouting for mum because they have forgot the reality they are in. I see the progress of having to assist the person to eat with a puréed diet because there swallow has been effected. I also see the families broken and frightened of who they now, don’t really know. I see the daughter visiting their mother but she no longer remembers being a mother. I have also been lucky enough to be with people at their end of life and know what it can be like sometimes I wish I did know as I am sure others wish they didn’t know.

My reality at the moment is wishing I didn’t know wishing I was being told by a professional at each stage rather already knowing quite a lot all at once so I know the possible end journey.

Just a family member

We forget that people who work in care or in the caring profession whether a doctor, nurse or care worker that they will have loved ones who may be suffering from a condition. But just because they have the knowledge they are not a doctor, nurse or carer when we are talking about a family member they are just a daughter, son, husband, mother etc. They too will be on the journey and even though they can’t forget what they have learnt or seen they will wish they could for a day so they can be just like everyone else and be the daughter, son etc.

Dementia is a journey for all. Just remember to enjoy the good days and role with the punches on the not so good days. Do what you can and just love each other.

Take care all.

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.

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

 

 

 

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.

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

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