Caregiving tip guide is one for the books

Random acts of kindness are okay, but living and behaving kindly every single day really makes sense.—Loretta LaRoche in Squeeze the Day: 365 ways to bring joy and juice into your life. 

The book  Should Mom be Left alone?  Should Dad be Driving?  Your Q&A Companion for Care giving has been occupying an amazing amount of my time the past few weeks. Published by New American Library, this book is an incredible resource for children of seniors and for all caregivers.  It is available on line from Amazon.com.

The book was written by Dr. Linda Rhodes, a former Secretary of Aging for the State of Pennsylvania and creator of her own award-winning Family Care Giving Program. Dr. Rhodes, like many of the best advisors on care giving issues, has been a caregiver herself, caring for her children’s great-grandmother who came to live with the family after a stroke.

With contents divided into three major sections, the book is not heavy, and is easy to carry with you for reading while waiting at the Doctor’s office, or in the fast food drive-thru line. The three major divisions are Navigating Health Care, Navigating Life and Navigating Legal and Money Matters. Pretty much covers the waterfront. You can scan through the questions in the table of contents and go immediately to a question that has been on your own mind. Dr. Rhode’s compassionate advice makes sense and is written in easy to understand plain English.  Suggestions are practical and tend to be steps that can actually be done.

Take, for example, the answer to the question How Can I get my sister to help me care for our mom?  I’ve hinted that I need help but she doesn’t offer to do anything! 

After several discussion paragraphs, Dr. Rhodes recommends that the caregiver create a picture of what it takes to care for mom, explaining that the sister can’t begin to do her fair share unless she “gets the whole picture.”  Dr. Rhodes says to make a two-column list. On the left hand side, write down everything you do for mom, perhaps your list would include making all of her doctors’ appointments, the medications she must take and how often, the insurance policies and paperwork involved in her care, the bills you pay on her behalf, the transportation you provide and/or must arrange, chores that are done on her behalf, food and clothes shopping, any medical or health care you provide, medical and health care you arrange for a professional to provide and any daily living needs you must provide such as dressing or food preparation.

Then, continues Dr. Rhodes, on the right-hand side of the list, identify all of the steps that you take to fulfill each task. Put in parentheses how much time each step takes. Now you are in a position to sit down with your sister and share the list. Don’t do the “Look at what a martyr I am” act,  hoping to throw your sister into guilt-ridden action. Rather, start by asking her to help you go through the list and provide input on how the two of you can come up with a care plan for your mother.

As an elder law attorney, I find this to be amazing advice based in actual reality. In my experience, a parental care giving situation often includes at least two people—one person who, by default or otherwise, has become the primary caregiver and the other one or more siblings, who are often nick-named “useless” by the primary caregiver. The useless group always has their side of the story, and it’s frequently true. They will often say that the primary caregiver is a perfectionist who won’t tolerate anyone else’s help. Sometimes the primary caregiver does not have a job either due to retirement, disability of some sort, or maybe they’ve moved back home after a divorce and can now take care of mom. The “useless” group often feels that’s only right since the primary caregiver is not working full-time outside the house. One thing for sure, whether they have joined the useless group on purpose or by accident, that group never truly comprehends how much it costs to be a caregiver, both in terms of money and in terms of physical, mental and emotional stress.

I visited Dr. Rhode’s web site, www.lindarhodes.com. It’s an incredibly helpful site, with lots of information and lists of other resources. For example, there is a wonderful “Medical Terms Cheat Sheet.”   Dr. Rhodes maintains that we should all learn to understand medical-speak, and that we should not be afraid to ask whoever is giving us information to explain the information in easily understandable language. So, she created the cheat sheet to help you get through doctor’s appointments and hospital visits. It’s available free on her web site.

If you are a family care giver, one of the best things you can do for yourself is to take a long look at the web site of Dr. Rhodes.  It is very, very helpful and full of suggestions, ideas, and encouragement.  Let me know what you think..

Thank you for reading.  Stay well.  See you next week.