Special insert, Polio Update, Spring 2002, Welcome, Post Polio Support Group of Maine, ME. 04345, Private, non-profit 501 [c] (3) organization. Information on the late effects of polio to more than nine hundred polio survivors, their families, and health care providers throughout Northern New England and parts of Canada. Support for our work comes from donations from the public and from a grant furnished by the Pine Tree Society, workers, Roosevelt, Canada, health-care, families, post-polio, muscles, fatigue, Pine Tree Society, March of Dimes, late effects, iron lung, salk, Southern Maine Business Directory

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Special Insert, Polio Update, Spring 2002, Newsletter
The Post Polio Support Group of Maine

When Caregivers & Spouses "Train Wreck"

"A Care-given Look At Caregiving"
by Connie Kennemer, a MS patient

Editor's note: While this article was written by someone with Multiple Sclerosis, we thought it may be relevant for others experiencing a debilitating situation.

This week my caregiver and I "train wrecked." We're still doing damage estimates: Minor, thank goodness, but worth evaluating for the purpose of avoiding future crashes.

After living with a diagnosis of MS for over 5 years I am still a student at UCI (University of Chronic Illness). Ideally I hoped to have this thing wired by now, having moved neatly through the "Stages Of Grief"-denial, anger, bargaining, and depression-to that final stage of acceptance. The reality is that I waffle between the first four more than I care to mention.

My "waffling" often plays itself out as deep sadness, fear, anxiety, and anger. Anger has to have a target, a place to "land." Mine too often ends up in a pile on the doorstep of my trusted caregiver- my spouse. While we don't share a common illness, we do share a common goal: to live well as life-partners, in good times and not-so-good times. I never doubt his commitment. He is functioning well on the downside of the marriage vow: "For better, for worse. In sickness and in health....". But we look through different lenses. He sees my battle from the outside-I fight from the other side of the skin. At times the contrast in views can present interesting challenges.

Sometimes I want my caregiver to line up his life in terms of my pressing needs. Too often I resent the fact that he can go, do, work, travel, plan and execute his plan-...when this disease has redefined my life blueprint in ways that I am still trying to grapple with. I find myself envious of his freedom, his stamina. I silently accuse him of having a "room with a view" while I have a room with dirty windows. Train approaching.

Lest you think that I'm just whining, consider with me the fact that self- evaluation can hold positive potential for both the caregiver and the "care-given." Can you see the value in exploring and tracking your reactions both to the disease and to its relational backlash?

Can I challenge both the caregiver and receiver to ask yourselves some questions: When are my reactions valid? When are they simply a painful reminder of the huge losses life has dealt me and those that I love? When is anger misplaced and misdirected? Where do "love-hate" moments occur ("I love this caregiver; I am jealous that his/her life is not on hold like mine is...." / "I love giving care... I hate that his/her needs drain me dry....")? Are we talking about these hot topics-or ignoring the flashing lights and railroad crossing bars, driving through toward certain peril? Do we give permission to explore unruly emotions on both sides of the track? TOP

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Dr. Henry writes about Polio Spouses

Originally published in the Central Va PPS Support Group's newsletter, The Deja View, in 1999.

Eleanor Roosevelt is probably the most famous polio spouse of this century. In August 1921, she became a polio spouse. During her husband's acute illness, she was his bedside nurse and performed many necessary duties such as attending to his urinary catherizations.

Over the next several years, despite her mother in law's opposition, she kept the hope alive in Franklin's mind that he could return to politics. Franklin did become the four times elected President of the United States. During this time, Eleanor became his conscience, promoting progressive social reform. She became his legs and traveled throughout the world as his "ambassador of hope."

She was a person ahead of her times. She was a feminist. She was compassionate and idealistic. She was a friend to the disenfranchised. She was an assertive and hopeful voice for the hungry, the unemployed, and African Americans. She became a writer, a teacher, lecturer, and voluntary ambassador.

When asked about her husband's polio, she would say his polio was a "blessing in disguise." Some had argued that FDR had always been a powerful and compassionate man; she believed that Franklin's struggle with polio "gave him a strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons --- infinite patience and never ending persistence."

Eleanor appeared on the Edward R. Murrow TV Show, "This I Believe." In response to a question about her life, she stated, "You have to accept whatever comes, and the only important thing is that you meet it with courage and with the best you have to give."

In my opinion, Eleanor Roosevelt's perceptions as a polio spouse are astute and wise. As polio survivors, most of us learned long ago about the value of patience, persistence, and trying to think through the fundamentals of living. For many of us, polio brought a precocious understanding of the perils of life. If we did not learn and exercise these lessons years ago, we certainly need to exercise them now with the realities of Post-Polio Syndrome (PPS).

There are a number of polio spouses who are quite active in our post-polio support group. From my observation, these spouses fully represent individuals who have learned "to accept whatever comes" and have met adversity with "courage and the best they have to give." No marriage is all bliss and joy. The realities of polio and now PPS can stress the best of marriages. Based on last year's survey of our group, 70% of our members are married. 51% felt that the development of PPS had had some impact on their families. The changes that might result in a marriage relationship as a result of PPS can be adverse, or can be part of the "for better or worse, in sickness and in health" definition of a committed marriage.

I think that polio spouses are often forgotten and overlooked heroes. For many of us, they are "gofers." They run errands, pick up things, and help with many details of daily living. They also get tired and moody, and have bodily aches and pains. Usually, they say "yes" more often than "no" to us, are our thoughtful personal advocates, and our loving protectors. Marriage relationships are traditionally complementary, as each spouse is expected to manage certain tasks toward the maintenance of a home and the raising of children. The invasion of PPS may alter the dynamics of that complement. As a consequence, the polio spouse may feel somewhat abandoned, needed more than loved, and less valued. This is more likely to occur when the PPSer is having greater difficulty accepting and adjusting to a life with PPS. When the PPSer is more anxious, fearful, depressed and uncommunicative, the polio spouse may be on the receiving end of irritability, complaining, and subtle rejection. Both marriage partners may well understand this process, but feel helpless in changing it. Meaningful communication is the key to working through the changes that have occurred and in establishing a new and lasting complementary relationship. If this level of communication is not possible, professional help may be an excellent next step.

As a first lady, Eleanor Roosevelt made a positive impact on the lives of many people. As a polio spouse, she must have felt the anger, fear, and uncertainty brought to their lives by her husband's polio. I feel that many polio spouses have felt and may still feel the anger, fear, and uncertainty that PPS has brought. There may be no brilliant dynamic psychotherapeutic models to resolve the realities of the impact of PPS on a marriage. Eleanor's advice is the best that I have heard:

"You have to accept whatever comes, and the only important thing is that you meet it with courage and with the best you have to give."

Editors note: If you are interested in caregiver issues we recommend the following publications and websites as a valuable resource.

Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, we produce Today's Caregiver Magazine, the first national magazine dedicated to caregivers, the "Sharing Wisdom Caregivers Conferences", and our web site www.caregiver.com which includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver Magazine, chat rooms and an online store. Caregiver Media Group and all of it's products are developed for caregivers, about caregivers and by caregivers. TOP INDEX