Calling All Caregivers

October 4, 2011

by Ellen Woodward Potts
Co-Author, A Pocket Guide for the Alzheimer’s Caregiver

First, there is the primary caregiver, the person who has responsibility for the well-being of the person with dementia.  Often, this is the spouse or an adult child or the person, but it also can be another family member or friend.  This person makes all or most of the decisions, although others may help in this process.

Next, comes the secondary caregiver.  These are usually other family members, sometimes friends, who have an interest in the well-being of the person with dementia.

The quality of the relationship between these people depends largely on the people involved and the way they choose to interact.  Each side has responsibilities and if everyone understands these, the relationship can be very supportive and positive.  If not, the relationship between these people can be awful.  As with so much else in life, it all depends on how you treat the other person.

Friends and loved ones often ask primary caregivers, “What can I do to help you?”  Too often, the answer is, “Nothing at all!  We’re just fine. Really.”   If you are the primary caregiver, you cannot say this and expect your loved ones to know how to help you.

You must tell your family and friends what you need.  The help you need may be the person’s time:  “I need a break every week.  If one of you could come stay with your mother for 4 hours every Saturday while I go to the grocery and get away for a while, that would be very helpful.”  Or, “I can’t keep up with the housework and care for your father.  I need you to clean my house once a month or stay with your father while I clean it.” It may be that you need financial help:  “For me to continue to care for our sister at home, I will need to hire sitters at night.  If you could give me $50 a month toward that cost, I would appreciate it.”  You may even say, “I’m so tired and exhausted, I don’t know where to tell you to start.”

If you are the secondary caregiver, insist on helping.  Tell the primary caregiver that you are going to help, so it might as well be something that would be helpful.  Give the primary caregiver options, “There is a dress sale at Macy’s on Saturday.  Why don’t I stay with dad while you go shop?” or “Dad, I’ll take mom to my house during the football game.”  Think of things the PRIMARY CAREGIVER would like to do and help them do these things.

Secondary caregivers (and for some reason, especially those who live out of town) are prone to criticism — of the primary caregiver, of the physician involved, of the facility where the person is living, etc.  You name it, secondary caregivers have criticized it.  As the secondary caregiver, your only job is to support the primary caregiver, not to criticize her or her choices.  If you are concerned about something, ask questions and have a conversation, but don’t criticize.  Remember that the primary caregiver is doing his or her best to survive this very difficult labor of love.  Support, not criticism, is what primary caregivers need.

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2 Responses to “Calling All Caregivers”

  1. Dan Koffman says:

    Dear Ellen,

    Well done!

    That was so well said . . . so concise . . . I support and thank you

    Cheers,

    Dan Koffman

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