Talking care and creativity
A conversation with Lindsay Johnstone
In the middle of the summer I had the great pleasure of chatting to the brilliant writer, Substack guiding light and lovely human being Lindsay Johnstone, as part of her Cost of Caring podcast. Lindsay was one of the first writers I came across when I started exploring Substack properly this year, and not only is she a stunning memoirist, singer, mum of two with a career in literacy and literature, she also takes time to encourage and promote and make connections for other writers. I strongly recommend a paid subscription to her Substack, What Now, which includes access to audio excerpts of her memoir Held in Mind, beautifully read by Lindsay herself.
The Cost of Caring series looks at the intersection of caring and creativity, and I urge any of you who are writing/drawing/painting/singing (etc) about or around your caring responsibilities to get in touch with Lindsay about taking part in the series by using this form.
Despite being nervous - I’ve never been interviewed about my writing before, yikes - and unable to get rid of the weird fuschia tinge my desktop computer gives me on Zoom, I enjoyed our conversation very much! Lindsay and I share a lot of common ground, not just taking on a caring role for our parents and writing about it, and I felt we really could have talked all day.
So, I hope I’m not too waffly and that you might get something from our conversation too. Thank you Lindsay for this opportunity.
Dementia and social care resources
Lindsay mentioned resources for people who are living with dementia or dealing with the social care system. I’ve added a few notes here on how these organisations helped my family through our long dementia journey. Feel free to share with anyone you think may find them helpful.
Beacon https://beaconchc.co.uk - advice on making applications for Continuing Health Care funding, or challenging funding decisions.
As most people dealing with dementia in the UK know, CHC funding can be very difficult to obtain. Beacon staff are the experts and helped us make a successful application for CHC funding for our mother for a number of years.
Alzheimer’s Society https://www.alzheimers.org.uk - information and resources for all types of dementia. Their helpline is 0333 150 3456.
I used this website countless times over the 10 year + period of my parents’ illnesses. It contains a wealth of helpful information about all aspects of living with the disease. The helpline will offer you a listening ear, and sometimes signposting to other services.
Admiral Nurses https://www.dementiauk.org/information-and-support/how-we-can-support-you/admiral-nurse-dementia-helpline - a helpline run by specialist dementia nurses, providing advice and support.
Admiral Nurses can support people with dementia at home and in care homes and they also work in local community services, GP practices and hospitals. They are specialists in dementia care and offer online clinics, assessments and a free advice helpline.
Carehome.co.uk https://www.carehome.co.uk - User reviews of care homes, residential homes and nursing homes.
Invaluable resource when looking for a care facility, although of course nothing beats visiting in person.
Care Rights UK https://www.carerightsuk.org - important charity campaigning for the rights of care home residents and their families.
Care Rights UK shouldn’t be as necessary as it is... It champions the rights of care facility residents and provides support for families experiencing any issues with social care. ‘We offer information, advice and support to empower people using care services, and their relatives and friends... We challenge poor care, highlight good practice and demand a better system’. Their Facebook page is also a good forum for support and advice from other relatives.
Compassion in Dying https://compassionindying.org.uk - free help and advice on creating living wills and making choices around dying.
We found Compassion in Dying during an extremely difficult situation with the manager of her care home. Even though we were our mother’s attorneys for health and welfare, our views about her care were not being listened to or respected, an all too common experience. Compassion in Dying gave us incredible support, both in terms of knowledge of the law and emotional back up.
John’s Campaign https://johnscampaign.org.uk - fighting for the right to stay with people with dementia and for the right of people with dementia to be supported by their family carers.
As anyone who has been prevented from visiting or accompanying a loved one knows, enshrining the right of people with dementia to be supported by a family member in healthcare settings is essential. A tiny organisation, John’s Campaign sets out good practice, puts pressure on NHS and care providers to commit to it, and where possible offers advice to families who are encountering barriers.
Alzheimer’s Research UK https://www.alzheimersresearchuk.org - latest news on dementia research and information on maintaining brain health.
A great resource for information about dementia and the latest research into the disease and potential treatments, offering an easy-to-use fundraising platform. You can also register to take part in research here - https://www.alzheimersresearchuk.org/research/getting-involved-in-research/
Hospices in the UK often offer a great range of services from bereavement counselling to dementia-friendly drop in sessions https://www.hospiceuk.org/hospice-care-finder
My mum was under the care of two hospices at her two care homes. The nurses initially helped us to write a palliative care plan which was agreed with the care home staff, and later on, supported us and the staff at the end of Mum’s life, facilitating access to medication and providing both clinical and emotional support. I’ll always be grateful to the wonderful nurses who helped us through that time.
Thanks as ever for reading.
I’m sorry for your losses Wendy. That sounds like an incredibly challenging time with your aunt, especially losing her in the middle of Covid. I’m thankful we didn’t have to go through that. POA is essential and it’s on my list of things to do for myself in the next year. Best to just have it in place.
Listening to it now, thank you. My mother in law is in a nursing home with dementia, so a very relevant discussion.
My own parents died in 2021 and their generation on my side are now gone, but I'm reminded of how hard it was to take responsibility for my aunt, who had a massive stroke in 2018 and was unable to move or speak afterwards. I had to become her legal guardian – a process which took 10 months – and find a suitable nursing home in the meantime, as she needed full-time care. All alongside my busy family life. I hadn't expected it at all and was so in at the deep end. She died in 2020, in the nursing home, during Covid. As you say, that was such a tough time.
That made me very aware of the need to plan ahead and make a Lasting Power of Attorney. It doesn't make everything easy, by any means, but I was glad I had POA in place when my parents became ill in 2021, as I needed it in both cases.