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  1. #1


    Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.

    Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you.

    Watch out for signs of depression, and don't delay in getting professional help when you need it.

    When people offer to help, accept the offer and suggest specific things that they can do.

    Educate yourself about your loved one's condition. Information is empowering.

    There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

    Trust your instincts. Most of the time they'll lead you in the right direction.

    Grieve for your losses, and then allow yourself to dream new dreams.

    Stand up for your rights as a caregiver and a citizen.

    Seek support from other caregivers. There is great strength in knowing you are not alone.

  2. #2

    AN ADDED NOTE: Caregiver Self Advocacy

    What does it mean to be a happy person when you are a family caregiver? How can you gain a feeling of confidence in your abilities and have a sense of pride in your achievements? How do you stand up for yourself, take care of yourself and find a balance between your own needs and those of your loved ones? ************************************************** ****** 1. Choose to take charge of your life. Don't let your loved one's illness or disability always take center stage.
    We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, "I choose to take on this caregiving role." It goes a long way toward eliminating the feeling of being a victim.

    2. Honor, value and love yourself. You're doing a very hard job and you deserve some quality time, just for your. Self care isn't a luxury. It's a necessity.
    Self care isn't a luxury. It is your right as a human being. Step back and recognize just how extraordinary you are, and remember your own good health is the very best present you can give your loved one.

    3. Seek, accept, and at times demand help. Don't be ashamed to ask for help. When people offer assistance, accept it and suggest specific things that they can do.
    Caregiving, especially at its most intense levels, is definitely more than a one person job. Asking for help is a sign of your strength and an acknowledgment of your abilities and your limitations.

    4. Stand up and be counted. Stand up for your rights as a caregiver
    and a citizen.
    Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.

  3. #3
    BirdeR, these are wonderful. Do you think that you can write this up in an email, combined with the secondary points and email them to me. I would like to put these points up on the carecure site as an article by you. Wise.

  4. #4


    I have posted your article on the CareCure Site. For the lack of a title, I have given it a temporary name. Please email me if you don't like the title, attribution, etc. and I can change it in a jiffy. I think that what you wrote is wonderful.


  5. #5

    Why PCAs Quit

    Here is the flip side as well. I think this often also applies to family caregivers:

    Why do PCAs quit? (Top 10 Reasons)

    1.Their initial job description was incomplete or keeps changing.
    2.The method and order in which they must perform their duties are illogical, inefficient and waste time.
    3.Their working environment is messy, unpleasant, disorganized, etc.
    4.They're not paid enough, don't get appropriate raises or don't feel their work is appreciated.
    5.They feel another PCA is favored over them.
    6.The employer (YOU) is either too passive or too aggressive in his/her style of interaction.
    7.The employer is dishonest about the hours worked, the salary owed, or has inappropriate expectations such as monetary loans or sexual favors.
    8.There are unreasonable duties-those the employer is able to perform alone, those which cannot be performed in the allotted time or those which are too tightly supervised.
    9.The employer is intolerant of honest mistakes, the need for sick time, etc.
    10.The employer doesn't respect PCA's personal life and expects that his or her needs should take priority over all else in the PCA's life.

    This is from this book:

    Price, June (1998) Avoiding Attendants from Hell: A Practical Guide to Finding, Hiring & Keeping Personal Care Attendants, $16.95 plus $3.50 shipping, c/o June Price, 3576 South 43rd St., #32, Milwaukee, WI, 53220-1550, tel. (414) 541-2848, or e-mail


  6. #6
    Senior Member martha's Avatar
    Join Date
    Jul 2001
    Texas hallelujah!

    KLD's List

    KLD, would you venture a guess as to whether your list of 10 reasons PCAs quit could be similar to why the incidence of divorce is so high in SCI's?


  7. #7
    Wise, could these be put permanently at the head of the caregivers forum? (or as a fAQ?) They're wonderful!

    BirdeR, thanks so much.


  8. #8
    I will try to put an active link to the article at the introductory message to this forum. Wise.

  9. #9
    Junior Member
    Join Date
    Nov 2001
    weston,florida USA

    wise words

    I am having a tough time...caring for my boyfriend full time...and not using wisdom in dealing with the situation. My family flies in from out-of-state to help us, but his own blood who live locally do not help at all because they are too involved in their own woes. This has put an enormous strain on our relationship. We go to church, and live under God's laws..(seperately).
    I need to vent... I have been sole caregiver for nearly two years...and feel overwhelmed at times.(a lot!)


  10. #10
    Dear Jill,

    Vent on! This is certainly the place to do it, and know that we've all been where you are, in our own separate circumstances. Ask questions, and ask for help; you'll get it! Feel free to email if you like.

    God bless us, every one! Jackie

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