Saturday, May 22, 2021

My Tree House - moving into long term care

 Soo much to say. I tried to make it as brief as possible.

IN SHORT


After two years of discussions with friends, family and in my own mind, I made the very big decision to move into a nursing home. It has been the right move but it certainly did not come easy.


Signing up at Signacare 


As you might know I have struggled over the past three years to get adequate and sufficient care to enable me to continue to live independently at home. See ME Advocates Blog for the back story.


The inadequacy of care landed me in emergency accommodation, a day after Christmas 2018. It was not a good experience. I vowed this would never ever happen again. A few weeks later I ended up in hospital and the conversation about what/if/when I could no longer cope at home began in earnest. My main drive to engage with this very uncomfortable topic was to be part of the narrative. If I had to move out of my beloved home, I would be the one making that decision and choose my location.


NO CARE AGAIN 


In mid-December 2020 I was facing an emergency placement again as the care agency no longer had carers available in my area. My two amazing carers had resigned from the agency, one for a permanent job and the other for personal reasons, shortly before. A frantic hunt was conducted by Disability Services to find a replacement care agency and keep me at home. On the 22nd of December I heard that I would have care from the 23rd by a new agency.


The stress of this was immense. More than I can express in words.


It brought me to apply for the Nursing Home Support Scheme, which if / when I had to move out of my home, would provide me (if approved) with financial assistance. The hardest application I have ever made in my life.


The continued stress of being dependent on care agencies to provide suitable carers, intensified during the past few months. There was absolutely no consistency in who came into my home. The more I expressed to the agency that consistency was an absolute necessity within the challenges of living with ME, the more I was responded to with “you don't have to keep telling us that”. But they didn’t listen. The more I expressed how some carers were a perfect match to my needs, the more these carers were removed from my schedule. This brought me to tears. Daily. The main topic of conversation with friends was about the bullying attitude of the agency. Even writing it now, brings distress. I could no longer correspond with the agency, as I feared that the most suitable carers would be removed further from my schedule.


BUT THE UNIVERSE WAS WITH ME 


Initially my application for the Nursing Home Support Scheme was declined. Understandably, as the application in no way reflected my circumstances. Is it written for the over 65’s and/or those living with dementia.

With the help of a friend I wrote an appeal. It took weeks to write and edit as I am slowly losing the ease to write. (This narrative here has been weeks brewing in my head ... but I need to write it ... for you, for others in my situation and for me...) My appeal was accepted. Within days actually. (Mid-April, I think it was.) 


RESEARCH


Over the preceding months I had researched many care and nursing homes in two counties, as well as independent living situations. I kept coming back to Signacare; Signacare have four locations with one in Waterford city. Their ethos spoke to me. The HIQA (inspection) report was positive. But what got me most was that this location was a renovated old hotel/Manor House. The photos I researched on Google showed me that there were many trees.

Trees means birds...!


FAST MOVES


After approval I rang the nursing home and had a very positive conversation with the manager Anne. She was very aware of the challenges of relocation, especially at a young age (59). She listened and provided me with answers which brought some peace to my frazzled mind. She suggested I needed to come and visit.


A day later a friend who was aware of the need for proper care, offered to fund the trip to the home by taxi. A few days later my friend Pascale and I visited Signacare Nursing Home in Waterford. An hour from my previous home.

We were greeted by Anne, and shortly after, the resident cat welcomed me and made all my worries ease. I laughed from relief. We sat under the tree I now see from my room. This memory makes my legs tingle. All was right at that very moment.


The cat.


While in the garden Anne pointed to the room she would show me. I said “that IS my room!”

And it became to be.

A week later Anne came for a home visit. To do the intake, but also to see who I was in my own environment.

A week later I came to my room for three-weeks respite.

But, it all felt right. Well, most of it. Funding came through a week after I came here. I stayed. My room felt like a Tree House and I named it as such. 

I was home. 


Tree House


PREPARATIONS 


Over the past year I had been sorting my house (See previous posts ). Probably in anticipation of this move. I had such a need for simplifying my life. I felt no longer able to manage my home and surroundings without consistent care. I struggled soo much. Family and friends expressed concerns. I realise now I was continuously trying to adapt my home, garden and studio to make being at home possible. It wasn’t. It isn’t. I tried. For sure. Friends have since told me that I was ‘imprisoned’ in my bedroom, and ‘shackled’ to my house. 


Two main reasons for the move were the ever-increasing demands of this illness ME (Myalgic Encephalomyelitis), as well as the failings of the care system to keep people with illness or disability under the age of 65 safe in their own environment. In charge of their own care with all the support required.


THE NOW


I am sad. 

I am happy.

I am grateful that I took the initiative to stay part of the narrative. 

I landed in the best possible place for me, right now. Yet it is a bizarre twist to never have a normal home again. Ringing the County Council to cancel my rent, my home, a few days ago was incredibly distressing.

But here I am supported to remain me. To find ways to re-gain my creative spirit.

I am valued for who I am. My views and questions listened to and respected.

I have the most beautiful room with a big window and watch nature from my bed.

I no longer have to manage a home.

I can go outside for a few minutes a day into the big spacious courtyard and just enjoy being in nature. And not have to organise maintaining my once so beloved garden.

I have access to 24hour care. I am left in peace when I need it.

My room is decorated with pieces of me. I tell myself that I have a lovely tiny apartment which happens to be in a nursing home. It makes it easier on the mind to deal with the immensity of this move. And the seemingly unsuitable location.

Carers tell me they love coming into my room as it is peaceful.


I am home. I am safe.  

Something I could no longer say at my house.

The universe came together and gave me my Tree House.

View from my bed


Thank you for having joined me and continue to join me along this adventure. This never-ending story. 

Thank you all who made this move possible, especially my friends who are sorting out my house without me having to witness the destruction, the de-construction. It would be much too stressful.

Thank you to some amazing carers and staff here who have made me feel welcome and so supported.


Care and support 


Corina

The Tree House


(Address emailed on request)



P.S.

This was an incredibly difficult decision to make. One which was years in the making. Please respect my choice. And try not see it through your eyes. Thank you.

17 comments:

Lise_messika@yahoo.com said...

Dear Corina,
It really looks like the Tree house and your cat were waiting for you to treat you right and telling you that you deserve the best and we love you for all you have done and are doing for yourself. Your message is also definitely important for all of us ��thank you��wish you the best

Audrey said...

Corina, I'm happy that you are safe & took a decision that makes life a little easier with your illness. Your tree house sounds perfect in spite of a not so perfect care system. Be happy & enjoy the view, it looks a lovely piece of nature that surrounds you. I'm imaging the joy you bring to the people in your new home, they must be thrilled to have such a creative join them. I'm sure together you'll share the best summer ahead. Like your tree, may your roots be strong & your branches look to the sun & feel the warmth. Thank God for people like Anne, they are but rare. I'll be watching out for updates of your continued happiness. Oh...& the joy of a tree, the universe sent you a tree, all will be well. X

Unknown said...

Wow. This brought me to tears. You are such a strong and inspirational woman, I love your room its so peaceful in there and I will be forever grateful for all your advice and kindness. Here's to many years of happiness at The Tree House x PS Biddy sure is delighted to have you here 😁🏡

Corina Duyn said...

Many thanks Lisa, Audrey and other person, (no name) I am honoured and grateful to have so many people get in touch with me with such lovely comments, here, on Facebook, in private message and the many postcards and letters I have received. As well as the well wishes in person. I am truly blessed to have you all.
Corina

Unknown said...

Oh my, what a beautiful place to land. And I am sure it must have been so hard, during this time, to shed so much of what you had accumulated. But I hear a relief in your writing that the decision is made, which must bring you ease of mind. Welcome home! Alison

Aran Edmonds said...

Hi Corina, wishing you peace and tranquillity in your new surroundings which look lovely. X 💜

Unknown said...

Such wisdom, courage and solid good sense...may you know much happiness and ease in this new phase of your precious life XX❤️

Unknown said...

Michele Bourke

Corina Duyn said...

Again thank you all, Aran, Michele and Alison .
you have no idea how wonderful it is to get the support from soo many in so many ways.
My deepest gratitude to you all
Corina

Pam Lutey said...

Dear Corina,
Thank you so much for telling your story. I know I will have to make the
same decision one of these days. I have so enjoyed hearing your life story and all you have done. I hope you will continue your art. Please keep us posted and best of luck in your new home.
Love,
Pam Lutey

Unknown said...

Hello Corina may your new home bring you love, peace, and happiness, and I'm glad you are happy, xx

Corina Duyn said...

Best wishes with your decision Pam. Although very sorry you are on this journey.
Also thank you ‘unknown’.
I so appreciate all the care I have received via so many different media. Totally unexpected.
Be well

catherine said...

Hi Corina, what a tough decision you have had to make but you have chosen a wonderful place to call your home. Under the guidance of the Anazing Anne and her caring staff you will hopefully feel that this was the right decision to make for you. My Dad is on that lower floor too and his window allows him to see the nature outside that he loves. Birds, squirrels, foxes and yes that cat who is a joy to befriend. I hope you find peace and happiness and look forward to seeing you in the garden,
Catherine

catherine said...

Hi Corina, what a tough decision you have had to make but you have chosen a wonderful place to call your home. Under the guidance of the Anazing Anne and her caring staff you will hopefully feel that this was the right decision to make for you. My Dad is on that lower floor too and his window allows him to see the nature outside that he loves. Birds, squirrels, foxes and yes that cat who is a joy to befriend. I hope you find peace and happiness and look forward to seeing you in the garden,
Catherine

Corina Duyn said...

Thank you Catherine.
I believe I have the most amazing room in a wonderful safe place. One of a kind in Ireland.
The birds have been my inspiration throughout decades of illness. The tree outside my window brings me not just birds, but squirrels too.
I saw a young foe last week. The cat comes to say hello every time I am out. Kitty is an ambassador for Signacare!
Best wishes

Laura McLoughlin said...

Corina this story has resonated with me in so many ways. Our Mam is a resident of Signacare since last Aug. Like you said it is thee most gut wrenching decision to make, and we had to make it on her behalf. The lack of care to keep her safe. The constant upheaval of a new carer , just as she got used to one they were gone. The worry of accidents and her state of mind as she was trapped within herself. To read your words , to see that you made your decision by the atmosphere and that you were of sound mind to make that choice is heart warming. Its as if you are speaking for my Mam and lots of others that cannot communicate any more . Its very comforting and reassuring to know we too did the right thing as to see the improvements in mams wellbeing are amazing.
I wish you well in your tree house ! Plenty squirrels too to keep us all entertained. Thank you for sharing your story. Laura.

Corina Duyn said...

Laura, my heart goes out to you. Thank you for your kind words and sharing your experience.
It took a lot of courage to write my story, but it has been an amazing few days to read the responses to it, and to know I in some way speak for others. That makes it all so much more ok.
We’ll meet one day.