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.

 

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“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.

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

 

 

 

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.

Simplicity of life🌧☔️💞💞

Tonight after feeling a little frustrated and low. I had a simplicistic moment that reminded me of being thankful and happy with what my life has become now. Sat in bed and the rain began to pour down. Watching the rain drops and listening to the rain whilst laid next to the man I love.

It was a gentle moment which initially I didn’t appreciate until Alan mentioned going out and sitting in the rain in the dark (something new for me) ☔️☔️☔️☔️☔️. So wrapped up in my dressing gown and Alan in his fleece we went outside. Alan prepared the brollie and we sat💞. Do you know what? It was lovely and very romantic. I sat, was held, kept close and dry by this man who has shown me how to look further and appreciate what is around me. The rain was lovely the droplets sliding down the brollie and the sound of pitter  patter. The dark sky’s just made you feel lost in a new world where we only existed just for that moment nothing mattered apart from that very moment. Lost in the sound but the imagination of being at loch Eck in the rain was beautiful. P1110133 (2)

Appreciating what I have is simple it’s not sweating the small stuff but looking at what’s there right there and right now.

Thank you for the new moment Alan you are my rock and remind me of the simple things in life.