If One Is Sick Two Need Help

Well Spouse Foundation

 

By Rena Dictor LeBlanc

 

It happened during a wedding ceremony.

 

The minister's words were beautiful.

 

But, they brought tears to my eyes.

 

He said, "Wherever they may go may they always return to one another," His words were especially meaningful to me because my daughter Mia and I are widows.

We both spent years caring for our husbands who were chronically ill with cancer. My husband Jerry LeBlanc had lung cancer. Mia's husband Kerry was a victim of melanoma. These were obstacles neither of us anticipated despite the line in the wedding vows, "...For better or for worse..."

For the five years of Kerry's illness, Mia was the most devoted caregiver I've ever known. Mia and I leaned on each other for support. My younger daughter Marisa LeBlanc was so deeply devoted to helping both of us that Mia once said, "What does someone do if they don't have a Marisa?"

"Providing Emotional Support"

 

The answer is, whether a person has a "Marisa" or not, he or she can turn to The Well Spouse Association (WSA) for help. It reportedly is the only national association devoted exclusively to providing emotional support for women and men, young and old, who are caring for a chronically ill/disabled partner. The motto of WSA is "If one is sick, two need help."

The organization sponsors a network of support groups in many parts of the country. It hosts an online discussion forum, and organizes workshops, conferences and respite weekends. According to the association, there are an estimated four million spousal caregivers in the U.S.

The Well Spouse Association has 1450 members across America, with some in Canada and other countries as well. It's website is http://www.wellspouse.org/, and its phone number is 800 838-0879.

Advice On Coping

Maggie Strong (her pen name) started the organization in 1988. Her husband was diagnosed with multiple sclerosis in 1977. As she cared for him and their children she felt physically and emotionally exhausted and helpless. "There were times I felt I can't do this any more. I had nowhere to turn to learn how to cope," she said. She wrote a book called "Mainstay-For the Well Spouse of the Chronically Ill". In the book she revealed the agonizing experiences of herself and her family. What's more she provided her own advice on coping as well as that of experts.

The organization started as a result of the response to the book by people who were in similar situations, and wrote to Maggie about their experiences. She recalled, "It was an enormous relief to have found people in the same position, and to be able to bring us all together. The critical thing is for spousal caregivers to know other spousal caregivers."

Richard Anderson, 62, is president of the Well Spouse Association. He was a spousal caregiver for twenty-nine of the thirty-one years of his marriage, until his wife died in 2004. He said, "I was committed to my wife. I was just doing what I had to do."

 

Resources That Help

 

Terry Corcoran, 56, cares for her husband Vincent, 72. "I quit work to take care of him full time. I was getting crazy. I would be crying and screaming and totally overwhelmed." She too turned to the organization for help. She said, "The Association is a wonderful place to have friendship and learn about resources that can help you."

 

Dorothy Saunders is the caregiver for her husband David who was shot in a robbery when he was twenty-one. He's been paralyzed from the neck down for over thirty years. In a poem she wrote called "Bullet" she said in part,

"...Arms that cannot hug,

Legs that cannot walk...

I mourn

For what was lost with that bullet,

And I ache with sadness"

 

Maggie, who brought all these caregivers together to help each other said, "Every once in a while I think about what have I done in life. It's just gratifying to have done something with sorrow."

(Previously published on the Eons website.)

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Comments 22 comments

KAREN SWENSON 8 years ago

THIS IS AN EXCELLENT ARTICLE AND REALLY HITS ON THE UPS AND DOWNS OF CARING FOR AN ILL PERSON. MY HUSBAND HAS ALL OF THE THINGS THAT GO WITH LONGTIME DIABETES. KIDNEW FAILURE, NO BLADDER, NERVE DAMAMGE, BRAIN FUNCTION AND OF COURSE, BRITTLE DIABETES. WE FIGHT QUITE A FEW BATTLES AND ARE GOING TO FIGHT ALOT MORE. THE WELL SPOUSE ASSOCIATION HELPS KEEP MY SANITY.


Judith Bromberg-Anderson 8 years ago

It was great and very moving. The WSA was a godsend to me also.


marilyn berman 8 years ago

My husband had a stroke and then dementiaq/alzheimer's disease. I looked after him for 7 years at home and he entered Maimonides (long term care) for the next 7. He died 6.5 years ago. And what a release and relief it was for me and for our two sons. And I vowed "this is a once only". But I had met someone who showed me life and happiness and together we are - 10 years later. And at this stage of our lives - who the heck is totally healthy? I had knee surgery and then at home, from painkillers that didn't agree, I went into a coma and had to be taken back to the hospital during our most awful snowstorm of the winter. Sid, after having bypass surgery the week after my son's wedding was okay until he begain to slide and has now undergone mega tests that don't show anything. This last one was a lung bronchoscopy. I think he got scared when he saw me unable to function and is in afunk. But, because we live together, its OUR funk. You can't really escape from caregiving unless you live a nomadic life with nobody around. We say once once only but the years say different. Thankfully there are organizations like Well Spouse.

I met Maggie when she was invited to speak to Hope and Cope - a cancer care facility. Thank you for that night, Maggie, for helping me come to the first meeting at King of Prussia and for helping me keep my sanity during the ensuing years.


loislane profile image

loislane 8 years ago from Los Angeles Author

Thanks for your comments. 

I want to spread the word about the Well Spouse Foundation in any way I can.  It helps so many people in so many ways.  I'm in awe of the wonderful support it provides. 

Rena LeBlanc


carrie van pelt 8 years ago

I'm new in WS and have already found support from the newsletter and this site. Thank you.


Arline 8 years ago

I joined Wellspouse a number of years ago, when my late husband was suffering from a heart condition, congestive heart failure and complications from diabetes. I looked forward to our local meetings, where I could safely say anything, rant, vent, moan and cry and be totally accepted by understanding, non-judgmental people. From these meetings and the Round Robin letter-writing group I joined, I've made life-long friends. Later on, Wellspouse provided me with a link to Widownet, where again I found the support and friendship I needed.

God bless Wellspouse!


Frances Rouse 8 years ago

In 1997 my wonderful husband had a stroke, over the years he had multiple strokes. I cared for him,worked daily and looked after our handicapped son. Honestly, I don't know how I did it. During this time, I sank into a major clinical depression, nearly killed myself.

My husband lived 5 years in a nursing home with stroke related dementia and an inability to speak.

I began looking for help and found WellSpouse, it was an answer to my many prayers.

Bill died 1.5.years ago, it was a long time coming, hell for me and my children. We have survived, thanks to all who listened and tried to help.

Thank you Wellspouse


Blanche S. Baurer 8 years ago

My husband, Ted suffered a major Hemorhagic stroke in March, 2,000. His left side was impaired which means he lost mechanical ability amd was wheelchair bound. Luckily he was able to speak and communicate. He was in a nursing home until he passed away in July, 2004.

Wellspouse was my mainstay and helped me get through the agony of watching my loved one suffer. I am so thankful for that group that provided so much help and comfort. What a wonderful organization!


Jan Beaty 8 years ago

I am one of the ten who started this magnificent organization in November 1988. My husband had diabetes when we married; he passed away 4 years ago after living with the disease for over 50 years.

The support we give each other as members of WSA is so important and so affirming. The effects of the diseases on the children, on the relationships and on each other never go away - and are seldom understood.

May the good work continue on for a long, long time. Jan Beaty


Gretchen Anthony 8 years ago

I am a "former" WS ... but still try to help out/support this great organization. I tell anyone I see pushing a wheelchair or "giving aid" to a partner about this group. It helped me keep my marbles when I was trying to cope as a caregiver. You lose any sense of self and of a future when you are a caregiver ... and if you are in a less than adiquate marriage (I had decided to ask for a divorce, 2 weeks later he was diagnosed with cancer - didn't want him to be alone and deal with the battle ahead) then this type of situation can really strain the relationship ... Wellspouse allowed me to openly explore my feelings and know that it was OK. I lost my husband to cancer almost 2 years ago ... I miss him and still love him, but am relieved that we are both free. Wellspouse gave me something to look forward to when there was nothing else, and I have not forgotten that, in fact much of what I learned thru them I am applying to my own life now.


loislane profile image

loislane 8 years ago from Los Angeles Author

The more comments I get from Well Spouse Foundation members, the more impressed I am with the immense ways in which the people in your organization help each other. Thanks so much for sharing your experiences with all of us. You have no idea how much good you do by relating your stories of love, loss and the blessings of the support you've received from members of the Well Spouse Foundation.


Fern Zeigler 8 years ago

Hi there. I have been a member since 1991. My husband died in 2001. I was very active in the org, facillitated a support group, etc., when my husband was alive. Now my only formal involvement is to continue to organize a respite weekend at Tyler State Park in Newtown, PA each year (by the way, it is a blast). Life was so difficult and WSA gave it meaning and gave me purpose. I have made lifelong friends. I still get together a few times a year with 4 of my WS friends, all who have lost their husbands. The bond is so deep, founded on our similar experience and mutual understanding. I don't know what I would have done without this organization. Thank you Maggie and the founders for organizing this lifeline for so many.


loislane profile image

loislane 8 years ago from Los Angeles Author

I'm sure your words have touched the hearts of so many people, as they have mine. Thanks again to all of you who have shared your experiences with us.


Jeri Billo 8 years ago

Thank you so much for this message and the many comments. My husband has been in a nursing home since 2001 from a hemorraghic stroke leaving him unable to walk or move. The poem above really touched me from the woman who's husband had been shot and unable to move. I love him very much but sometimes feel as though I am in this battle alone. Thank you for all that Wellspouse does for all of us.

Thank you again, Jeri Billo


loislane profile image

loislane 8 years ago from Los Angeles Author

With every comment you have made here, and all that I already know about the Well Spouse Foundation, I realize that your organization is filled with unsung heroes.


Anita G 8 years ago

My husband was shot in the neck after 15 yrs of our marriage. It paralyzed him from the shoulders, down. He is always full of optimism and even so, the caregiving can be grueling. I found Well Spouse (WS) 5 yrs into my husband's injury and not a moment too soon. I know I can talk to another WS about my feelings with no judgments, an open ear and an open heart. I have made life long friends with those who know how I feel and what I go through without me having to explain. There is no other organization like it in the U.S. Well Spouse has changed my life. It has made me stronger and more able to cope with my situation. It has also given me many tools in which to enjoy my life more and take better care of myself. WHAT MOST PEOPLE DON'T REALIZE IS THAT THE WELL SPOUSE ASSOCIATION IS DOING SUCH GREAT THINGS ON A SHOE STRING BUDGET. It operates mostly from donated funds, grants and with many volunteers, most of which are, too a WS, or a former WS. WS is not a foundation, but an organization in need of funds to continue this exceptional cause; helping many of us when we felt we were at the end of our ropes. Just think of how many more people WS could help if it had more funds. In addition WS needs more exposure. MANY PEOPLE WHO NEED WS DON'T EVEN KNOW WS IS THERE FOR THEM. Well Spouse is helping spousal caregivers, one caregiver at a time. It will be a happy day when all those who need help can "google" their way to Well Spouse's website and get the help they need.


Marie Leak 8 years ago

I am a leader of the NE Phoenix AZ WSA support group. Leading this group has done wonders for me.

In a safe and supportive enviornment, I can tell my story and listen to the stories of the others in the group. There is nothing we can't acknowledge about what we are feeling. It is so wonderful to be understood by people going through the caregiver experience.

I am so grateful I discoved the Well Spouse Association.

Marie


ruth Auerbach 8 years ago

please start a chapter in los angeles....i need you... i am sure there are others that feel the same way...my husband is a stroke patient who can not talk and is very limited in what he can do.. he is at home and has been sick for 13 years........HELP.....i live in west los angeles and would be happy to to do some organizing but i have limited time..as i do work outside of our home...you can contact me at ruauerbach@roadrunner.com


loislane profile image

loislane 8 years ago from Los Angeles Author

Dear Ruth:

I hope anyone who reads your message and is interested in starting a chapter of the Well Spouse Foundation in Los Angeles will contact you at your ruauerbach@roadrunner.com

Rena


rob 7 years ago

Here is a link to a Spousal Caregiver Social Network

This for Caregivers, have some fun, meet someone in your area, or just vent...

http://spousalcaregiversmeet.ning.com/main/feature...


patsy 7 years ago

my huband had a major stroke six months ago,he has to have 24 7 care . i have not left my home since then.he can do things like going to the bath room,even tho he wears diapers,but he wont, he wants me to change the bedding ever 3 hrs. he is also on a feeding tub.i am so tired but i will not put him in a nursing home.i dont know what to do,i have lost 30 lbs.and he is so mean, but he always was,help


loislane profile image

loislane 7 years ago from Los Angeles Author

Patsy:

I'm so sorry you're going through this.  I believe you can get help through the Well Spouse Foundation.  Click on the link to the organization in my blog.  If anyone can understand what you're going through and offer advice and support it's the people in this wonderful organization.  You deserve their support and I hope you get it. 

Also contact an association for victims of stroke.  They also may have a group that offers support for caregivers.

Rena

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