Dear Palliverse Community
Five years ago, I started a Palliverse discussion with a contribution about my role as a carer for my wife, Carole with dementia. Carole died in 2019 when her cognitive abilities were no longer sufficient to maintain the routine function of vital organs. So Carole literally died of dementia which is not very common. Many patients die of injuries or comorbidity factors. We did the whole journey together.
I resolved to write booklets to help other carers in the various stages of dementia. To have this done and published while memories were fresh, I gave myself a year (and used almost all of it). I published eleven brief booklets on Amazon in 2020.
|1. Dementia Caregiver Survival||3|
|2. Tips For Newbie Dementia Carers||15|
|3. Tips For Communicating||28|
|4. Diagnosing Dementia||38|
|5. Take Genetic Testing?||61|
|6. “I’m FINE!” Coping with Anosognosia||68|
|7. Managing The Rage Stage||73|
|8. Selecting a Dementia Residence||89|
|9. Managing Dementia Placement||97|
|10. Coping with End of Life||107|
|11. Picking Up The Pieces||121|
|12. Manejando la etapa de la ira. Libro 7 de la serie||134|
|13. Bien gérer les accès de colère Volet 7||147|
|14. Dementia Carer- Tips from a Mentor (the compilation of 1-13)||This book|
I was born without my share of the Mother Teresa gene, but I learned a lot along the way and became a mentor on an international carer support forum. The booklets have been well received by carers, and professors of nursing wanted a compilation for use in education. The compilation is now used in nursing degree courses in USA, Canada and UK. In 2021, the compilation has become a teaching resource in Australian tertiary studies.
I should pass on to practitioners some observations I recently made to another carer, a Kiwi to whom I am a mentor.
“The thing I continue to find remarkable is the reception of the booklets by leading practitioners. These booklets were written simply for fellow carers. They are brief because carers have little time.
“The compilation was a hasty afterthought when the booklets first caught the eye of a nursing professor. It made no attempt at continuity or de-duplication or any kind of rewrite… just a stack of booklets under a title !”
Your enthusiasm is very flattering to me. The simplicity of expression in my booklets was intended originally to reach fellow carers. It results in reviews like ‘raw’ and ‘frank’ and I guess it makes these resources stand apart from professional and academic literature on these subjects.You generously noted they are practical and experienced. Those are the attributes that appeal to other carers and that is where these booklets are truly innovative. Some ideas here have not found expression elsewhere in any form at all.So I am most grateful for your endorsement to some colleagues and I hope to continue to contribute.
If you can forgive the literary shortcomings and the blunt presentation, I believe you will find more practical help and support in these booklets than elsewhere. I offer this resource (Word file attached) for use by Palliverse community members and for referral to carers of persons with dementia. The link follows to the publications from Amazon.