[ad_1]
In today’s blogs, I am sharing my story of role transitions and dementia. The role change from daughter to carer (& power of attorney) to a care home visitor. My story begins in 2012, I was working full time, and my children were still at primary school, aged 7 and 10.
I had started my current job and had to explain to my new boss I would not be in on my second day in my new role. Instead, I was sitting in a large day room of an NHS setting with my sister, my mum and my dad with a psychiatrist, an occupational therapist, and a community psychiatrist nurse (CPN). They all shared their assessments and finally said to us that dad had dementia and we left with a lot of information leaflets and advice to contact Alzheimer Scotland. At which point, I just remember my dad smiling at me and winking.
We all had a different experience of that day. However, what I remember was my dad saying that he did not have dementia and that was a belief he held for the next three years. You see his sister (my aunt) had early onset dementia and that was what he understood dementia “to look like”. While he never spoke about the diagnosis again, my mum, sister and I worked as a team and kept my dad at home and became his care co-ordinators. That was the beginning of my transition from daughter to carer.
In 2012, there was no post diagnostic support, so the three of us worked to our strengths co-ordinating his care with third sector, health and social care, speaking to GPs, hospital staff, district nurses, social workers, care at home, care homes, occupational therapists and paramedics. But we kept him at home where he was happy with his routine of watching his beloved golf on the TV, going on the bus to Leith and also just popping along to my house whenever he wanted to! Then we had to say goodbye to dad, just three days before Christmas in 2015. It was hard, but I look back on his care and think, we did our very best and he was happy. However, at that time of loss, I began to look more closely at my mum and I thought “surely not”. Yes, the routine we had created for dad, now that was no longer there, I could see a change in my mum.
To be honest, I probably saw the changes well before then but my life was busy, young children, their transition to high school, I was supporting my mum through her bereavement, helping her to run her own home and mum had other long term conditions so she was in and out of the GP practice and other hospital appointments.
However, things came to a head in 2020 when we were in lockdown. I have forgotten the order of who my sister and I were speaking to but again we were in the role of care co-ordinators for my mum, looking for support and finally ready to look for “that diagnosis”. My mum had had a CT scan a while ago which showed some brain atrophy (& made me wander if this was the early signs of vascular dementia), she was also not managing her daily activities as she had been, and I had many practical examples of why I believed it was dementia.
However, we got to the stage of many unplanned hospital admissions, needing to phone emergency services this time ambulance and fire service, speaking to GPs, care at home, district nurses, occupational therapists, physiotherapists, advanced nurse practitioners but it became clear, the support we had in place was not working. Mum was finally and with much sadness, admitted to hospital. Despite my best efforts along with my sister, mum never got home.
While in hospital, in 2021, the diagnosis was finally confirmed after much “assertive negotiation” by my sister and I. We were also informed the only place for mum now was a care home. At this time, due to the impact of the pandemic, there was no multi-disciplinary meetings that my sister, mum and I could attend, to hear all the assessments or to consider alternatives to a care home. All the decisions were delivered through phone calls with the medical team and social worker. This time the dementia diagnosis was also confirmed to me, again on the phone, by a CPN while I was sitting in my living room on my own. I then had to phone my sister and tell her the diagnosis. While we were not surprised to finally hear the diagnosis of dementia this was still a lot to process for us all, a care home and a new diagnosis. The pandemic had changed everything, the way we received the diagnosis and any follow up support.
The care home decision I am still wrestling with today. As a carer, I am left with a sense of unease over this decision and the emotional roller coaster of emotions I experienced. I did ask my mum, when my sister and I were looking at care homes for her, what’s important to you. Mum replied, “to be near you, for it to be clean and for it be friendly” and we added on the list, “that your dog can visit”. I took some comfort that we met her requests.
Mum moved into the care home in October 2021 and this was my final transition from daughter to carer to care home visitor. I have to admit this was the hardest transition for me and one that I am still processing to this day. To be a “care home visitor” was tough, I had to sign the care home contract, sell (& empty) a house, wait for a stranger to answer the door to her “home” and sign a visitor book every time I came to see mum!
However, we did manage to have an amazing family celebration for mum at my house in July 2022. She was 90 and loved just having us all around her: two daughters, two sons-in-law, four grandsons, one great granddaughter and of course our dog. Family was really important to mum. Then suddenly, we had to say goodbye to mum in September 2022.
I look back now on 2022, it was a heart wrenching year for me personally however an amazing year for me professionally. I had the honour of being made a visiting professor at Edinburgh Napier University, I received my Royal College of Occupational Therapy Fellowship, and I was integral to publishing a book on occupational therapy and dementia. (McLean et al 2023) that I proudly dedicated to Tom and June. My mum and dad were the biggest supporters of my career and I think they would have loved to have been able to celebrate with me, especially my mum, she always loved a party. I wrote in 2013,
“Dementia is one of the foremost public health challenges worldwide; I can also confidently predict that the majority of occupational therapists will work with someone who has dementia or will know someone who has dementia and have their own personal story to tell. I know I do”. (Hunter 2013)
I hope by sharing a small part of my personal story, I have offered you a moment in time to consider your own transitions when supporting a parent or indeed your own reflections of the impact of dementia in your family.
Thank you for reading part of my story in this blog.
Elaine
References
Hunter EP (2013) The Elizabeth Casson Memorial Lecture 2013: Transformational leadership in occupational therapy — delivering change through conversations. British Journal of Occupational Therapy, 76(8), 346–354.
Maclean F., Warren A., Hunter E., Wescott L. 2023 Occupational Therapy and Dementia. Promoting Inclusion, Rights and Opportunities for People Living with Dementia. Jessica Kingsley Publishers, London
[ad_2]
Source_link