August 28, 2004
Topic: Supporting Our Supporters Our last meeting was held on August 28, 2004. Our topic was "Supporting Those that Support Us". From that meeting, I wanted to share "10 Tips for Caregivers" and a thoughtful letter "Fibromites". In addition, check out the links to other resources for Caregivers on the Internet Sites page. And last, don't forget September 20-26 is National Invisible Chronic Illness Awareness Week. 
September 20-26, 2004, is a designated time, worldwide, in which people who live with chronic illness, those that love them, and organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the affects of living with a disease that is not visually apparent. National Invisible Chronic Illness Awareness Week Website
Ten Tips for Caregivers
by the National Family Caregivers Association, Kensington, MD, the nations only organization for all family caregivers. Choose to take charge of your life, and don't let your loved ones 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 they can do.
Educate yourself about your loved ones condition. Information is empowering.
There's a difference between caring and doing. Be open to technologies and ideas that promote your loved ones independence.
Trust your instincts. Most of the time they'll lead you in the right direction.
Grieve for your losses, and 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.
A Letter To "Fibromites"
Contributed by the Late Donna Euteneier
Copyright 2003 from http://www.fibrohugs.com
A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness..... and I agree with this statement, but only when we are given information, understanding and support ourselves.
Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives. I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have to be allowed to morn that loss also.
We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt.
We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more than life itself and TOGETHER we will find our way.
You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything is as it should be.... thus expect from you what we have always expected.
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