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I have written several articles, in the past years, about the Well Spouse Foundation. I became a member of this organization decades ago. The book Mainstay, by Maggie Strong, was really the start. When I read this book, written by a young woman when her husband became ill with Multiple Sclerosis, I felt I had found a friend who was dealing with the same emotions that I was coping with. Mainstay was the impetus that led to the Well Spouse Association. It is a wonderful organization that provides support for the spouses of the chronically ill.
Through their newsletter, “Mainstay,”(which I have often referred to as a support group in your mailbox) many well spouses get emotional and practical help. Their many programs include respite weekends, forums, listings of local support groups, book reviews, and online discussions that give many well spouses their only contact with others who are dealing with the same problems, situations and emotions.
Their Mentor Program is online support for members providing one to one support for a well spouse from a veteran caregiver. For members without e-mail who want to communicate with other well spouses, their Round Robin Letter Writing Groups consists of communication among five to seven well spouses.
Social Security Administration in New York
I hope this will help some of you ease the financial burden of chronic illness a bit. For more information on the Well Spouse Association, contact Well Spouse Association, 63 West Main Street, Suite H Freehold, NJ 07728 or you can call 800-838-0879, 732-577-8899 or fax 732-577-8644. Their e-mail address is email@example.com and their website is . It may be one of the most supportive things you do for yourself as a well spouse.
You can reach me at firstname.lastname@example.org
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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.
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.
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/some-financial-help-from-social-security/2008/07/30/
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