Brain Support Network volunteer Denise Dagan recently read the book “Everything You Need to Know About Caregiving for Parkinson’s Disease,” and shared a short review.
Robin
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Denise’s Review of
“Everything You Need to Know About Caregiving for Parkinson’s Disease”
by Lianna Marie, published 2016
This book is #6 on Caring.com’s list “8 of the Best Books About Caregiving” published in 2016.
The author is a fellow caregiver, Lianna Marie. Her mother has had Parkinson’s for 25 years. The writing style and organization is direct, no-nonsense, concise, and comprehensive. The font is even a bit bigger and double-spaced for older eyes. I quite enjoyed the short, thoughtful, quotes from famous people at the beginnings of each chapter.
My criticisms would be that it seems not to go into depth on any topic, but wait until you get to Part 5, “Getting Practical: Caregiving for Parkinson’s.” Here’s where we get to the meat of this book. Also, it’s a tad repetitive, but she’s emphasizing some points, and topics do overlap. Finally, she only cites [only two websites as sources of online information].
The organization is in nine parts:
1. Caregiving 101 – only nine pages, but they spell out the practical burdens of caregiving and ask you to consider whether you should take on the task.
2. What to Expect – You’ve said, “Yes.” Now, you need a plan. Get documents in place, make a budget, set boundaries, and get help.
3. Emotional Aspects – Notice this loop: “…you get stressed out from your caregiving duties, which then makes your loved one stressed out, causing them to lose mobility, which leads to both of you being more stressed out, and so on.” Avoid the loop by taking her advice. I also like that she talks specifically about guilt, and resentment in this section.
4. General Caregiving – “Caregiving is a process of trial and error. You will make mistakes from time-to-time, but learning from them is the key.” This section briefly discusses some things not usually covered in a caregiving book, like, How to help when help isn’t wanted, What not to do when caregiving, and What to do when no one will help. I yearned for more detail on that last topic, but a book can’t solve such complex problems, and it does get you thinking along the right lines.
5. Parkinson’s Caregiving – The meat of the book begins by giving a heads-up for early, mid, and late stage Parkinson’s caregiving issues, while subsequent sections get into specific tips on Home safety, Mobility, Preventing falls, Freezing, Medications, Hallucinations, Weight loss, Drooling & dry mouth, and Swallowing. Her advice is spot-on.
6. For Spouses – Unique to this section is setting boundaries. Friends, family, even doctors and nurses may say, “Don’t worry, the wife/husband will do it,” but everyone has limits and it’s okay to express that you’re completely overwhelmed. Also of interest is a discussion of anger and resentment, even how Parkinson’s may affect your sex life.
7. Getting Help – In addition to the usual respite and housing options, this section addresses disability benefits and how to pay for caregiving costs with web links to US, UK, Canada, and Australia government aid sources.
8. Caring for You – You can’t be there for your family if you don’t put your own self-care first. In finding the will to make time for your own self-care you may have to overcome personal barriers, like negative thinking, feeling selfish, or hollow promises (like, “I’ll never put you in a home.”). Uniquely, this section includes tips on how to avoid caregiver weight gain.
9. Tough Caregiving Decisions & Issues – She saved tips on the biggest issues for last: When is it time to take away the care keys? Convincing someone they need in-home care. The dreaded nursing home decision. Keeping the peace in the family. Parkinson’s and dementia at once. Anticipatory grief.
Caregiver Resources – US, UK, Canada, and Australia caregiver organizations, financial resources, housing help, online caregiver resources, online forums/support groups.
Helpful Gadgets for People With Parkinson’s – grabbers & reachers, LaserCane, Medical Alert System, fall detectors, handheld massagers, big button cell phone, automatic pill reminders, and Skype.
– Denise