Hello my name is Samantha and I do feel very passionate about writing an informative book about my experiences regarding my father eventually going to live permanently in a care home. I feel so strongly about informing people about everything that I have researched and discovered without any help or information from the NHS, the local council, no real guidelines, property, medical services at all. I am quite an organised, intelligent person but it has been like a minefield every corner. I have had a breakdown, counselling and if I can help anyone with my experiences, and information that all these institutions that simply do not inform you about which is absolutely disgusting. Has anyone felt this strongly as I do?
What a great way to vent out your frustrations, as is writing a book!
I recently read a book by a woman who helped her mother do a final exit by use of VSED (voluntarily stop eating and drinking).
Her book was so fully informative that I often mention it here; It's called the VSED Handbook and is written by Kate Christie.
She included a glossary of sites she used, of things people can access for their own information and for help. And with that full glossary she has created a wonderful tool for access to help with death and dying laws, legal assistance, doulas and guides and etc. She has it on Amazon at only 14.00.
Such books written by people who have direct experience are marvelous.
My other favorites are Never Simple, a memoir by Liz Scheier and MotherLode by Gretchen Staebler. The former is about attempting to intervene to care for a mentally ill mom (all to no avail) and the latter about a woman moving home to care for her mother).
Writing is not only valuable to others (do know that getting published is a crucible and something you should research well as you can; even the best writers often don't make it through) but it is cathartic to the WRITER.
I love good writing and I couldn't wish you more luck.
You go for it. At best you help 1,000s of others and at worst you have a diary that passes into the family for generations.
If your in the US, then your experiences will be interesting on how you navigated the system.
It's like these light bulbs, why didn't I know my mother following me around the house was called , shadowing, and part of dementia. If I new that a year ago or 2 it would of helped me be more understanding.
I consider my self a rather intelligent person , when it comes to something s, and there is so much I didn't know.
There was so much I didn't know. Any information that reaches out to people, I felt so ignorant getting into this. Write away!!
How could you be expected to know about 'shadowing' 'showtiming' or any of it if you never had experience in caregiving for elderly people and dementia sufferers. That isn't your fault.
I believe it's up to the Departments of Public Health to keep a sort of census of aging people then start mailing literature on conditions like dementia and offer resources and education to people who are caregivers or who have seniors in their lives that they may be caring for at some point.
It sounds like you are in the UK. It would be interesting to me to hear your story.
My Mom moved back to the UK about 20 years ago. She got really bad during the pandemic , and we had her move into the care home in England. She eventually died in England, I did'nt make it back in time despite my best efforts, flew over as fast as I could but it was 12 hours after her death. But her sister and my brother were with her. The good thing, when at end of life and essentially on hospice care, the NHS hospitals let you go back in to hospital , with full nursing, pain meds as needed, and visitors can come and go , even during pandemic. At that time during the pandemic, it was more than the US hospitals would allow. IN the US, elderly were dying during the pandemic with no loved ones allowed by their side....
Now, its 2024, and I have my dad in assisted living in the US. I'm seeing differences in approach to death in the US vs the UK. The differences are quite interesting. I'm really getting cynical and jaded about how we do it in the US and we "have to keep people alive as long as possible" even though the patient is miserable and wishes they had died already and the family is also miserable. My dad repeatedly tells me "I wish you had just let me die" . I'm begining to think that in Europe they have a better approach to this. So anyway - if you write a book, I'm glad to pay $25 and then read it!
It boils down to how willing you are to put all the work into writing a book that may not get the word to the people you hope will read it. Especially considering that those people can surf the internet and find out what they want to know just like you must have done.
If you still want to do it, go for it!
https://www.nytimes.com/2023/11/14/health/long-term-care-facilities-costs.html
https://www.nytimes.com/2023/11/14/health/long-term-care-insurance-global.html