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November 27, 2014 / 5 Kislev, 5775
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Self-Care (Part II)

I was privileged to participate in a support group of “well spouses”. Like other such support groups, they had started out as an eclectic group. There were parents, siblings, and children of the chronically ill along with the partners. After a few meetings, they found that their reactions to the illness, and so their needs for support, were too different. After all, a mother will react differently to the pressures of a child’s illness than will a sibling.

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.



Document #1

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.


Document #2

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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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

Printed from: http://www.jewishpress.com/sections/magazine/self-care-part-ii/2004/08/11/

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