Full house….

The third tenant moves in next week, great news let’s hope the move goes well for her and her family!

It’s not the easy road to take but a forward thinking one in giving our children the loving push for independent living.

Met the neighbours at the weekend – they are a breath of fresh air – so lovely 😊 instant connection, another box ticked!

Molly, what can I tell you? More good days than bad, we do church on Sundays, I see her every weekend, she is going to more social events – not sure what she makes of it all but good that she is trying her best and having a go…..she has lost her first stone at slimming world and I must thank the staff team for their support and keeping her on track!

Me – I still struggle leaving her on Sunday’s but by Tuesday I am back in my work mode and accept I just have to get on with it. I truly hope in time it will get easier, stressing is draining and no good for us at all. I am getting better at keeping on keeping on in fact I am becoming a pro!

I have said this before but I would like to reiterate how much I wish Molly could express her feelings and talk to me more. She hardly said two words over the weekend and thats hard, it doesn’t mean there is a problem but would I know if there was? She is complex but I love her – end of.

Molly will be 23 on the 14th June I hope she has a wonderful birthday and pray she settles more and more with everyday that passes.

CPN visit today went well, seeing Psychiatrist later in the month and hoping the antipsychotic medication dosage can be reduced at some point soon.

It’s almost 10 month since Mountview was purchased and it’s hard to believe how far we have travelled to get to this point. The future is unknown but I want to get more comfortable with it all now, start taking life less seriously, less striving more chilling, more fun. That would be nice…. 🙏🏻

Luv C x

May I …..

It’s almost 3 months since Mollys discharge date, we had a new tenant move in two weeks ago and the third will join them early June, ‘Full house’ wow!

I have spent the weekend will Molly who is doing so well, she has lost 10.5 pounds now in weight and finding her feet now in her new routine. No tears this weekend, I loved every minute I spent with her, she is often my rock and I wouldn’t know what to do without her….. not a lot else matters, this is our life and all we know and as of now I feel excited about the future and pray the journey ahead is smooth, also knowing that if it isn’t then we are ok and can cope with that too, that we know what we are heading for and how to deal with the ups and the downs.

Couldn’t be prouder of Molly, normal life is such a challenge for her, little by little I am giving her a loving push to be the best she can be.

I attended an Expert by Experience panel this week and what I learned was that no matter what age, race, gender, circumstances these patients are relying on this system to support them, find the best solutions, ensure actions are carried out and that the patient/person is at the centre of all decision making. Giving back from my experiences truly felt amazing and hopefully will help with a rippling effect!

As I continue to advocate for Molly I feel a shift toward another ‘why’ which will be to support others experiencing either being or potentially being sectioned under the mental health act.

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After a 48 hour shift (including two sleep overs which were good, slept like babies) I have arrived home to an empty place and began to unpack from the weekend. My weekend starts tomorrow – a day to reflect and pull myself together in acceptance and try and understand that although Molly has her forever home will she ever understand that ? Will it ever get easier to leave her? Have I done enough and made the most of every precious minute? Do I portray the real me who constantly tries to be brave and feels tired of waiting for this all to feel natural. Can I accept that this is the way we will always be and can I learn to accept that the road we take is the way forward. I stand strong in my faith that all things work for the good in those that know we all have a Heavenly Father who knows every hair on our head and knows what I need before I ask.

My prayer tonight is to bless the girls in Mount View, the staff and their families, give us the wisdom and grace to support this project in everything we do Amen.

Luv C x

Thank you to all who read and support this blog.

Let’s start living…

Those were my last words on the previous blog and to be honest I meant it but today I don’t really know where to begin.

I am living of course and I do try to do my best but there is always the day that comes and knocks you off your feet again and yesterday was one of them! My Molly wanted to come home, she broke down and cried.

Today as I reflect I feel very angry and upset – why has everything got to be so hard?

When Molly my 22 year old (who realistically is so so much younger) cries and tries so hard to be brave, fear explodes inside of me. I drove away from the house in tears and full of rage, feeling ‘woe is me’ not pretty but good to be real and feel! (So they say)

I think” I know best” but I know I don’t always, I search for answers which maybe I won’t find.

  • We took some flowers and eggs to Edenwood, could that have stirred something inside her, did I unknowingly make a big mistake?
  • I didn’t stay for the weekend as I have done for the past 2 month
  • late transitioning of the 1st new tenant.

ASC – your turn now:

You should again look at your processes – you don’t realise that you are making decisions around budgeting without fully considering the people you are impacting. You can go to work then leave for the weekend while others are left to pick up the pieces – I am sorry but in my opinion and experience you act too slow – be it policy or government to blame I believe you could try harder, Mollys lessons learnt was probably a tick box exercise to appease me – by the way it didn’t.

My lesson learnt this weekend it to NEVER forget that trying to spontaneously do normal things (just by default) doesn’t work, always stand by and do what you know works and if changes have to be made then make every effort to plan and prepare, explain in ways your child understands, do not assume it’s ok and give family and staff as much information as possible so they take on your experience as their mother/father who would ultimately die for them. I don’t think Molly has fully understood what was about to happen and now we all suffer the consequences – planning is key – always and it’s mandatory not an option!

As parents we can only live and breath if they, our special children are content – happy and accept that it is for the best that they don’t come home….

or is it? – inner voice – please shut up and give me a break!

Right gonna get up now and keep on keeping on ..,.

To all of you battling out there sending 🙏🏻 and ♥️

Luv C x

Updates – Week 3/4 all rolled into one!

Where does time go and how can I get it to slow down?

This week raised some concerns and potential deteriation in Mollys presentation, highlighted these to all concerns and have a psychiatric appointment this coming Thursday. Better to make sure we are all doing everything possible for her. Always knew this wasn’t the end of this journey just the beginning of a new path.

Bec’s came to stay over last night and hopefully soon she will move in permanently – third time lucky for her funding application fingers crossed 🤞 everyone!!

This house is amazing I love it here, couldn’t of wished for anything better we have been so blessed!  Finally got the wardrobe built, thank you Robert 🙏🏻 It is all finally all coming together……

Week three for me was hard, I couldn’t call the house in case I heard anything negative, I just couldn’t of coped, a bit weak of me I know, however I have been conditioned and need to undo so much that has come to pass with this experience.

Let’s keep on keeping on and moving forward.

Week 4 until now 3/4/2019

Molly is settled, she has developed a nice routine that she is coping well with. Concerns over her weight gain due to medication and the longevity of her stay in hospital (not to mention hospital food) so she has joined Slimming World and within the last two weeks she has lost 5lb – well done Molly! Thank goodness for Curly Wurly’s at least she feels like she is having a treat!

I am still covering the informal care until new tenants join her, Bec’s has been approved so she will be able to move in this month and hopefully the third tenant soon after.

I will be having an open day to celebrate this project and to promote ‘taking action’ yourself if you don’t get the support or help you need to achieve independent supported living. Let’s just remember everyone has rights and also a voice.

Can’t recommend New Foundations as a social housing landlord enough! Met our new handy man recently – a lovely guy who has a great understanding of his special need tenants, he was like a breath of fresh air as the saying goes…

Luv C

 

 

 

Mount View Week 2

Beautiful present received for Molly from an old school friend of mine – thank you Catharine Naylor – just perfect!

Managed to get the bath water temperature sorted out but the new remote thermostat is a bugger to control to say the least, sat last night on youtube trying to work it out and I haven’t cracked it yet much to my disappointment.

Another good week to report, transition to staff changes will always be a problem which hopefully will improve in time.  It was also half term which meant Prism Art was not on and Molly likes her routine as we know. Same old, same old if the best way forward in the autistic world, it feels safe.  To be fair she visited the Grace Little centre (Mencap) last week and when I dropped her off this Morning she said she was going to finish her stencilling I was quite impressed, she engaged with staff and other service users and was very happy for me to leave, in fact it was as if she wanted me to go? When I got in the car I smiled to myself feeling like wow this feels good, different but good!

When they are ok then we are too – it’s just a given!

Didn’t get the shelves painted, the staff boards put up or Molly wardrobe built its a full-time job just caring.  I take my hat off to the carers out there! I don’t know how I managed Molly at home full time and working.  I suppose when you have to you have to …..you just do the best you can.

Haven’t really wound down yet but I will and I feel excited at the thought!

So far so good 😊

Take care all luv C x

 

 

’Free Molly’ 18th February 2019 – it’s true!

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Mission accomplished, today was a big day, Mollys section was lifted and she has been officially discharged from hospital. We had a very positive MDT meeting today and all reports exceeded our expectations!

I left Molly at the house this morning after my weekend shift which literally went too quick for me, it’s all been a lot to take in and the build up to this day is hitting home, it’s all too good to be true! Molly has been a star, it’s a huge milestone and hopefully her last upheaval- transition. She can now move forward in hopefully her forever home, I couldn’t ask for anything more.

Mollys CPN will visit tomorrow (within 24 hours of discharge) and she will be monitored by the professionals at a couple more MDT meetings and then her usual reviews. The ward manager said that the staff were all very fond of Molly and that they miss her and wish her every happiness, so lovely to hear!

I will miss Edenwood, don’t know how many times I have walked the Carleton Mile or picked up the litter around the estate (pretending it was her little job) I think the Road on the way up to the clinic had the best Xmas lights in Carlisle last December! I will however still be up there in my new role of Expert by Experience as a panel member on Care and Treatment Reviews.

This is not the end only a new way forward and it is still early days. Will be in touch soon just wanted to share the good news I received today!

Luv C x

Acceptance

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Well it’s Saturday night I took over from Mencap this morning, to see Molly for the first time since last Sunday was exciting to say the least! She was fine, it’s all quite unbelievable she is accepting that this is her home. She is one lucky girl and what my friends have done for us both is actually priceless!

I am sitting here in this beautiful house while Molly sleeps thinking dreams really can come true!

A great team are in place to support Molly going forward and I have such gratitude to all the staff in Edenwood who have been Molly’s and my family for the past thirteen months, they have played a huge part in her recovery and I will always be grateful for their support and care for Molly. I am adjusting to going straight home after work instead of going to the hospital and it’s pretty weird.

Week 1 – I am actually lost for words!

I am hopeful, happy and very very proud.

Luv C x

Big day!

This is Mental

Just a quick update from me, last minute crisis forgot to get the washing machine plumbed. I took a hire van back this morning (was collecting more things for the house yesterday) only killed a pheasant on the way and had feathers everywhere and a broken grill! That aside met with Mencap to go over Mollys care plan – all ship shape so this is it ….and we’re off!!!

Cleaned out cupboards all afternoon keeping busy busy – don’t want to think about it all but of course I just can’t switch off! Update revealed she wont take her coat off, she is resisting oh dear…..only to be expected I suppose, so hard for special needs people but lots of TLC and Hot chocolate will help I am sure.

I feel like I want to run to her but I can’t. We have to get passed this, I will see…

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SAS who dares wins

Thursday pm

Do you watch this programme? I am addicted to it, these recruits are unbelievable physically and mentally!

I am not physically fit but I am mentally, I know this is so because of all the challenges I have faced fighting for and caring for my daughter Molly. Life is very different for carers, not better not worse just very different. I have said this before “you almost have to surrender your own life” it just becomes your way of life which has been forever normal to you.

Discharge is imminent – this Monday coming – I don’t know how it will go but whatever happens we will deal with it at the time, I only live in the moment that I am in now, there is no room to think ahead although saying that I am very organised and prepared I have tried to imagine what the house needs from the point of view of the girls and the staff.

Yesterday a friend of my sons fitted a new sink, two radiators and sorted the settings for the water even cleaned a fire and got it working for us. No charge for his time – he said he wanted to support this cause. How amazing is that, such a gentleman and so generous!! Craig thank you from the bottom of my heart! 💜 (you are an Angel) – Dark Rum it is then!

Three days to go…………………

Just want to say big a thank you to Stephen Prince (Molly’s dad) for all his hard work and to my son Rob who completed the electrical work today supported by Mark his work colleague. In between all this Robs baby son River Lucas Prince 💙 was born on 26th of last month, little brother for Hallie 💖 and cousin to Caleb 💙 well done Lauren and Rob!

It’s all happening in Mollywood!

Watch this space there is more to come!! praying for a smooth transition 🙏🏻.

Luv C x