Soo much to say. I tried to make it as brief as possible.
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.
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.)
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...!
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.
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.
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.
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
The Tree House
(Address emailed on request)
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.