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Posted: July 07, 2005

Spousal Caregiving

A 36-Hour Day? How Can That Be?

Bill AndrewHave you ever thought about where your day goes each day that you are a spousal caregiver? Time really does seem to "fly" -- doesn't it? Speaking from personal experience, this is especially true if you are the 24/7 caregiver for a spouse who has Alzheimer disease. In fact, the 24-hour day just does not seem to allow enough time for taking care of your spouse's needs -- much less your own.

In a letter pulled from my e-mailbag, Edward poses this apparent dichotomy as a major problem along with seeking help in his dilemma. He wonders how he can get everything done in a 24-hour day as a 24/7 caregiver for his spouse and still have time for himself. This is one situation in which my personal Alzheimer's caregiver experience can help him since that is exactly my spousal caregiving role.

_____

Dear Bill:

My wife was recently diagnosed with a dementia -- probable Alzheimer disease. At the present time, she is still able to do many of the things that she did before. However, she often forgets what she just finished saying or doing. Sometimes I find the strangest items in the strangest places … like the iron in the freezer! While these and other challenges occur each day, how can I find enough time for taking care of her and still be able to take care of my own needs? There are not enough hours in the day!

Where can I go to obtain more information about the disease? How can I find support for both my wife and myself? What resources should I be looking for? Help!

Edward B., Jackson, Mississippi
_____

You are going through the same stages as I did with my wife -- and the same stages other spouses have gone through as they travel the "journey" of Alzheimer's disease with their loved ones. Yes, Edward, there is a "36-hour day" -- or what feels like it!

In fact, I would highly recommend that you acquire the book The 36-Hour Day (Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H., The Johns Hopkins University Press). First published in 1981, other editions (with updates) were published in 1991 and 1999. It is currently available in paperback as well in the revised and updated version. I still use the 1999 Third Edition for reference as I encounter problems during my wife's late-stage battle with Alzheimer's. More than 500,000 copies are in print -- testimony to the value of the book. In fact, the Alzheimer's Association and many doctors often refer to this book.

The general principles and guidelines in The 36-Hour Day are just as applicable today as they were when they were first developed for the 1981 edition. However, the most recent edition brings the reader up to date on the latest information that is available on Alzheimer's disease. It is described as "a family guide to caring for persons with Alzheimer's, related dementing illnesses, and memory loss in late life."

I think you will find the answers to your current questions, and future questions as well, in this classic book. While the book may not answer any clinical questions about the disease itself, it will address those issues that you will encounter as you continue to provide care for your wife. You will find that the "36-hour day" really does exist -- at least in terms of the many things that you will encounter each and every day. The title of the book says it all -- at the end of many days, you will think that 36 hours have elapsed and not 24 (at least, it will feel like that).

Edward, I hope that this helps you. I know that the book has helped me and many others in our Alzheimer's support group. You may even find that you will have more time for yourself. Thanks for writing, and may God bless you and your wife during this "journey" called Alzheimer's disease.
_____

WORDS TO CARE BY . . .

"This time, like all times, is a very good one
if we but know what to do with it."

Ralph Waldo Emerson (1803-1882)


Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.

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© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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