Box upside down

How do people cope when their lives are turned upside down?

  • A young newlywed pulls out of his garage on a seemingly average day, headed to work. He never makes it to the office – a horrific car accident causes permanent paralysis from his neck down.

  • An active woman about to retire and travel with her spouse to their dream destinations has a massive stroke, resulting in loss of speech and severe memory and personality deficits.

  • A mother with small children anxiously tells her husband that her legs have been going numb. Tests reveal that she has multiple sclerosis.

One‘s immediate reaction is compassion and concern for people stricken with such serious medical conditions, as it should be. But there are others severely impacted also, and they too are in need of support. The Well Spouse Association is a nonprofit organization whose mission is to offer peer support to those caring for chronically ill or disabled spouses or partners. Our motto is: When one is sick, two need help.™

Often spousal caregivers first go through a heroic phase. They hope that by finding the best doctor, the best physical therapist, and the right medications, their spouses can be restored to their previous health, or at least that the disease’s ravages can be halted or minimized.

 Whether the ill spouse remains stable, but impaired, or has a degenerative progressive illness, “well spouses” often experience a multitude of emotions, including ongoing grief, anger, anxiety, resentment, depression and loneliness. Acknowledging these emotions can trigger a deep sense of guilt when the spousal caregiver is unaware that these feelings are appropriate to the situation.

When well spouses find WSA, they feel greatly relieved that they are finally among others who truly understand their journey and can assure them that their feelings are normal. Family and friends, while well-meaning, often say the wrong things, causing well spouses to feel isolated.

Studies have shown that spousal caregivers experience more depression and stress because they are usually with the ill spouse 24/7, and are less likely to have help than other types of caregivers. Spousal caregivers often find themselves in charge of almost everything – all household maintenance, all child care, all chauffeuring, cooking, cleaning, and shopping, and the managing of all financial and insurance matters. This is on top of working outside the home to provide income, and whatever hands-on care the ill/disabled person needs. Each day brings reminders that they have lost their life partners in many ways, as well as their dreams for the future with their spouses.

How does WSA help?

We have a forum on our website – registration is required and applicants are screened, ensuring that you can speak freely and safely.  We have instant chat.  We have face-to-face support groups in many areas of the country.  We have telephone support groups geared toward specific segments of our membership who don’t have a face-to-face group in their region.  We offer respite weekends and a national conference.   Mainstay, our bimonthly member-written newsletter, is full of book reviews, articles on how our members cope, what our local groups are up to, and more.  We have a mentor program for those seeking one-on-one help.  Finally, we also have a Facebook page where we post links to articles related to caregiving (frequently those from The Caregiver Space) and a Facebook group (Spousal Caregivers – Well Spouse Association).

It is such a relief to discover that you aren’t alone in your feelings.

It lifts a weight to be able to talk with others going through the same situations.  Especially with Valentine’s Day coming up – who else could you complain to about how much you hate hearing about others’ romantic getaways, while you’re at home bathing and feeding your spouse?  We get it, which is why we tell our members that with WSA, “you are not alone.”  We also share practical tips and best practices which make our daily challenges easier to handle.  Sometimes the advice from one’s peers in the trenches is more useful than that from the most renowned medical specialists!

Please visit our website, www.wellspouse.org , call our office at 1-800-838-0879, or look for us on our Facebook page for more information.  Our dues are affordable, and if you’re a military spouse, your first year is free!  Join our club that no one wants to be in – but that welcomes you with hugs and understanding.

Written by Jan Rabinowitz and Dorothy Saunders, co-presidents of the Well Spouse Association.

Written by Dorothy Saunders
Dorothy Saunders has been a caregiver for 40 years for her husband, who became a quadriplegic while in law school. They have two grown sons. Dorothy has led a spousal caregiver support group for 12 years, and is the Co-President of the Well Spouse Association, as well as the Co-Editor of WSA's newsletter, Mainstay.

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1 Comment

  1. We have a spousal caregiver chat on Tuesdays at 10pm with Bob Harrison. Bob is a regular contributor to the site, so you probably know him already from his blogs and the forums.

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