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Posted: November 22, 2007

Spousal Caregiving

Caregivers, Speak Up For Your Rights!

Bill Andrew

In my last column, Celebrating Caregiver Recognition Month, I referenced several proclamations issued by President Bush regarding family caregivers. One of them dealt with National Family Caregivers Month, which I’ll delve into in more detail today, especially as it applies to spousal caregivers. 

The National Family Caregivers Association (NFCA) organizes this month-long event each year to thank, support, educate, and celebrate all family caregivers. Suzanne Mintz, president and co-founder of the NFCA, said, "This year we are encouraging people to speak up during National Family Caregivers Month. One of the most important attributes on being an advocate for your loved one is the willingness and the ability to speak up and keep your eye on the ultimate goal -- protecting not only the health and safety of your loved ones but for yourself as well."

NFCA publishes the quarterly newsletter TAKE CARE! The Fall 2007 issue featured an article entitled "Speak Up!" which, in this case, means raising our voices so others can hear us better. According to the newsletter, when we speak up, we tend to solve problems, we learn, we educate others, and we bring about change.

You and I probably spoke up quite a bit during the typical day when we weren't caregivers. However, as spousal caregivers, many of us tend to be quiet and accept our fate as a caregiver for our spouse. That is because we are often on uncertain grounds, our knowledge and actions are questionable since we are learning new routines, and we don't attend support group meetings where we can exchange ideas and coping skills that might boost our confidence.

The question we have to ask ourselves is, "How do we speak up for ourselves, for our loved ones, and for all family and spousal caregivers? Without being difficult or obnoxious, how do we get what we need?" Here are some suggestions:

Have confidence in your ability to say to yourself, "I can do this."

Be angry enough to say, "I need help and I am going to get it."

Be knowledgeable about what you are doing so that you approach the problem with authority.

Believe that speaking up for your rights, and those of your loved one, are critical if you are to succeed in this caregiver journey.

This NFCA article also included some suggestions that will help you speak up for respect, for support, for information, for help, and for the rights of all family and spousal caregivers.

Believe in yourself. By believing in yourself and your own abilities, you can speak up by making informed decisions that are in the best interests of your loved one and yourself. This includes:

Identify yourself as a family or spousal caregiver -- "I am one!"

Know your strengths and weaknesses

Learn to say "no" when appropriate

Command respect from healthcare providers -- talk on their level

Protect your personal health.

Make sure that you get a good night's sleep each and every night

Arrange for periodic respite "holidays" to "recharge your batteries"

Make time for exercise to relieve your stress

Arrange for periodic physical checkups to catch any problems early

Make sure that you have a life of your own apart from caregiving

Reach out for help.

Recognize that family and spousal caregiving is more than a one-person job

Ask for care coordinator services to help you navigate the confusing options available to you and ensure care continuity of your loved one

Ask for financial assistance that will facilitate obtaining care services

Seek out community-based support services available to you

Take advantage of regular respite opportunities

Speak up for caregiver rights.

Speak up for caregiver education and training

Speak up for affordable healthcare insurance if needed

Speak up for financial support if needed

Speak up for annual review of your caregiver needs

There is a Biblical precedent for speaking up for your rights that you may want to consider. In Luke 18: 35-43, Jesus is approaching Jericho when a blind man cried out over and over for Him to "have mercy on me." Despite the rebuke from the crowd, he continued to "speak up" until Jesus asked him what he wanted. The blind man said, "Lord, let me receive my sight." And Jesus said to him, "Receive your sight; your faith has made you well." As a result of his "speaking up", the blind man received his sight again.

Are you like that blind man? Are you "speaking up" over and over for your caregiver rights? To paraphrase what we said at the beginning of this column, have you spoken up for yourself, for your loved one, and for other family or spousal caregivers? Have you spoken up to get what you need as a caregiver? Have you used some of the suggestions discussed above as you continue your caregiver journey with your loved one? If so, we would like to hear from you with your success stories.

Please e-mail me at with your comments and/or reactions. I will include them in a future column with your permission. Provide your full name and address. In the column, I will only use your first name and the initial of your last name as well as your city and state. Thank you.


"Yesterday is gone. Tomorrow has not yet come.

We have only today. Let us begin."

Blessed Mother Teresa of Calcutta (1910-97)



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

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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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