And so they became three groups: one for partners, one for children, and one for significant others. The partners group quickly discovered that the men and women in the group saw and felt things differently. They seemed to endure different losses. And so, this group was soon divided in two – a husband’s group and a wife’s group. The one common thread that was true for all of the groups was the desperate need for self-care.
The umbrella institution that sponsored the support groups had come up with two documents. I am not sure where they originated, but all the support groups, whether they were parents, children or partners of the chronically ill, welcomed these documents. Some felt they were a lifeline and read them everyday. Some told me they even hung them at a prominent place in their homes so others might see them.
The Well Spouse Bill Of Rights
I have a right to time on my own.
I have a right to take care of myself.
I have a right to meet with friends.
I have a right to go out for lunch or dinner.
I have a right to go out and still feel part of the “well world.”
I have a right to set limits on my spouse’s demands for care or attention.
I have a right to attend a well spouse support group.
I have a right to take time away – a right to daily and weekly breaks.
I have a right to occasional vacations providing relief from care giving and responsibility.
I have a right not to accept full responsibility for how my children’s lives have been affected by having a chronically ill parent.
I have a right not to feel guilty because I can walk, dress myself or bathe myself – in short because I am well.
I have a right to express my own emotions, even if I am sad, scared, angry or needing affection.
Ideas For Taking Care Of Yourself
(From The Well Spouse Foundation)
● Schedule time alone in a place that gives you peace every day.
● Be Gentle with yourself.
● Attend a local support group for well spouses.
● Use lists – to care for yourself – to care for your spouse. Post-its work great.
● Exercise aerobically 20-30 minutes six days a week.
● Develop a private space in the house just for you.
● Welcome your spiritual side.
● Welcome counseling in your life. (Individual and Marital).
● If your spouse lashes out at you, remind him/her that you are the wrong address.
● Do loving things your mom did for you when you were a child. Warm your bed with a hot water bottle before bedtime. Make a cup of hot tea or hot chocolate. Take a bubble bath. Bake (or buy) your favorite cookies. Little things so make a difference.
● Discover a hobby and schedule it into your life weekly.
● Schedule lunch with a life-giving friend who isn’t a well spouse, at least once a month. Schedule lunch with a life-giving friend who is a well spouse, at least once a month.
● Stop. Breathe deeply.
● Get a massage once a month. Touch is essential for life.
● Buy yourself flowers once a month.
● Keep a journal. Share parts with a close friend or counselor.
● Pay attention to your feelings, especially those of loss. Mourn the losses.
● Nourish your being.
● Listen to that quiet inner voice that says, “Enough, I need to be here right now! I need rest.” Give yourself the peace you crave, no matter how limited the time.
● Take advantage of formal and informal respite care services. Ask five relatives to take care of your spouse during 10 weekends each year.
● Schedule sleeping later than normal at least once a week.
● Spend time alone with your children.
● Read something positive and inspirational every day.
● Be aware of fusing with your spouse and his/her illness. Live within appropriate boundaries so you (and your feelings and needs) don’t disappear. You have the right to feel the way you do.
● Remind yourself that progress is healthier than perfection.
● Remember that you deserve a life too.
● Remember that no one else will take care of you except you.
Obviously, the items mentioned above will not speak the same way to everyone. Pick those that make sense to you, that you need to work on in your growth in self-care.
It is clear that caregivers as a group have shouldered so many demands for so very long that they have forgotten the simple rights and ideas for self care that so many of us so easily take for granted.
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