What started as a blog is now a book: Keeping Mum – Caring for Someone with Dementia was published in the UK this April. Writer Marianne Talbot (interesting aside about the author: she was thrown out of school at the age of 15 and is presently the director of studies in philosophy at Oxford University) shares with readers the experiences of caring for her Mum in “a funny, frank and at times emotionally tearing” way.
If you are caring/have cared for someone with dementia, then you know how “emotionally tearing” it can be – and how important it is to approach caregiving with humor and honesty too. Talbot’s book is a true reflection of the raw reality experienced by 35.6 million people around the world.
Five million Americans have Alzheimer’s or a related dementia. In the UK, there are 750,000 afflicted. When you take these numbers in the context of each respective country’s overall populations (US: 311,340,051; UK: 61,838,154), it’s clear that both countries are facing a crisis of overwhelming proportions. Much of the UK’s statistics on caregiving for individuals with Alzheimer’s are akin to ours: the majority of caregivers are women who are also balancing a job and caring for the needs of their own families.
So whenever individuals like Marianne Talbot can put a face on these statistics and share their personal stories to encourage, strengthen, educate and empower others who are in similar shoes, then in some small way, I believe we are doing what we can to face the crisis head-on.
Talbot kept a full-time job while serving as the “carer” (what our friends across the pond call caregivers) for her Mum in her own home for five years. Chapter titles (which were built from Marianne’s blog posts) include Routines, Morality, Bathtime, Postal Scams, Care Costs, Deafness, Equilibrium, Ominous Diagnosis, and Mourning Mum – illustrating the expansive range of issues confronted by dementia carers on a daily (and sometimes even minute-by-minute) basis.
In the second half of the book, Talbot provides tips for carers, a section on carer’s fury (essentially, dealing with the guilt, anger, heartbreak and utter frustration that is Alzheimer’s caregiving), ‘the practicalities’ (money, property, the law, social services, health and welfare), and checklists to guide you through the stages of caring.
Here’s an excerpt from the book on the problematic caregiving issue that is incontinence. Talbot writes:
“Incontinence. You’ll get used to it. I kept spray disinfectant in every loo (the apple-smelling ones are nice). I bought industrial-sized quantities of latex gloves (but usually didn’t have time to put them on). Disposable pants are a godsend. Your best incontinence aid is a sense of humor.”
Another excerpt from a chapter on dignity held these beautiful words, which I believe says it all for those who are/have been Alzheimer’s caregivers/dementia carers:
“I prefer to think of myself as having chosen to care for Mum. It gives me control, makes me feel less of a victim. I could have put her in a home. You could do the same. Instead we are voluntarily doing what we believe to be right.”
No matter whether you call it a loo or a bathroom, that’s really what it comes down to. Caring for someone with dementia is a heart-wrenching journey for everyone involved…but you don’t have to be a victim. Rest in the knowledge that you are doing what you believe to be right, and know there are others walking the same road too.
Buy the book or get more info at: http://www.hayhouse.co.uk/books/1848502915/keeping-mum.