Untitled

Untitled today is about not being able to put my finger on what I wish to share but knowing I need to at least try.  I think I have lost the the WHY for this site and so I am in the process of deciding. Until then  I may not have a lot to post to share.

I could share the trials of my mother and father which have been interesting but is that what my blog was for? Or do I need to re-vamp altogether if so what do I want to gain from the blogging? I don’t want to continue to feel that my blog is untitled but at present it is and I now need to decide.

These are my ideas:

Blog soley about care and what experiences I have and other have.

Blog for resource sharing?

Blog that incoropates the journey we are going to go on with my father (AKA Grumpy)/

Blog to look at training and assessing within care.

 

Or do I make it a mixture and do something like a month on each?

Also I need to find out my WHY!

 

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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

 

 

 

What’s next, What can I do?

Today I am sat at home, waiting  to do some one to one session with learners (working from home), had appointments booked in but sadly not one completed at the moment and its gone 12:00 (tick tock). However, I have had an interesting call about a new idea for a support site and I am now questioning what I want to do next.

Don’t get me wrong assessing in general is a good job and it fits with my life but like today, I have not had a session completed, sadly people not picking up the phone, no work to mark so in some sense it becomes hard to ensure someone’s learning journey is consistent and meaningful. Commitment sometimes is lacking or schedules change in care and people just don’t let me know.

So I am now sat here thinking (cogs turning, head full).

My ultimate goal was to go into more training, motivational sessions to get people to buy into the care and how to be the best. I wanted to get a community talking about care but not sure how.

I see the best but some times not the so good (poor practice and care). I set up my Facebook page and this blog to try to get a community talking and sharing their stories but to be honest its not working. Have less then 100 likes on FB page which if you consider the amount of people in care that’s just nothing. Followers on word-press I have 21. Is this because I don’t use profanities, I do a blow by blow log of my day, is it because people just don’t talk about care or is it people in care just don’t have the time.

So where am I going wrong? What do I need to do?  Where do I go from here?

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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.

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.