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Author: Paula Derr, National Multiple Sclerosis Society, Maria M. Meyer
Publisher: CareTrust Publications (2006)
Binding: Paperback, 324 pages
This really is a must-read for anyone who cares for someone with MS. People with MS who are currently care-free (or care-less) would do well to read it also. Mindfully illustrated, well-organized, and exhaustive in its breadth of information, the book addresses the important issues facing those who are trying to retain quality of life at home while coping with worsening MS.
There are chapters on major hurdles, such as financial planning, deciding on and implementing the level of care needed, and adaptive physical/material considerations. There are usefully illustrated chapters covering body postioning and transferring for one who cannot move voluntarily. There are also detailed chapters about hygiene, catherterization, feeding, and otherwise maintaining both the body and spirits of a loved one with MS. Those details could be chilling for one who has MS and may be daunting for a caregiver, too, but the writing is calm and supportive. One feels encouraged to explore options rather than run from unpleasant realities.
There are, thankfully, suggestions for caregiver relief and extensive resources for outside aid involving respite care and vacation/travel arrangements. There is discussion of the potential for abuse (both of caregivers and of care-receivers). End-of-life planning is also covered. There are lists of agencies that may be of help.
Our life experience doesn’t generally prepare us for coping with disability as a matter of course.This book might reasonably have been titled “Caregiving for Dummies” for it at least touches on almost everything one might ever need to know. In fact, there is much in the book that I wasn’t even aware was knowable.
Writing as a reviewer who has worsening MS, I can’t say I felt light-hearted while reading it, but I would refer to this book without hesitation should I need the knowledge it contains. The possibility of a loved one’s MS worsening is always a threat. It is good to know that someone has taken the trouble to research and organize the information one might require and to present it invitingly. It is, indeed, a comfort.
