Support for Spousal Caregivers

Please enjoy these member stories which appeared in our Mainstay newsletter or other publications for the first time.  

To see the members only stories, you must be logged in as a supporting WSA member.

Do you have a story you would like to share in an upcoming issue of Mainstay, in the Member Minute, or on the Website? Please use the contact form to email it to This email address is being protected from spambots. You need JavaScript enabled to view it., or send by mail to: Mainstay c/o WSA, 63 West Main St, Suite H, Freehold, NJ 07728

We receive many letters and notes in our office. Read what our members say about Well Spouse, our programs, and our staff from this sampling . . .

In this section the Well Spouse® Association presents articles on the kinds of support the organization has to offer spousal caregivers.

Many first join the organization as Supporting Members; others join as Non-Supporting Members, free for one year, then go on to become Supporting Members in recognition of how much the fellowship with other well spouses means to them. 

While the WSA Online Forum and other non-public areas of the website are reserved only for spousal caregivers, their relatives or friends may be wondering how they can help their loved ones / friends. The article below has some suggestions.

Respite for Well Spouses describes one of the benefits of Supporting Membership - attending a weekend respite event with other well spouses, as a break from their spousal caregiving.

You're open for business -- so are we -- Let's get together...

You as a professional or a business person are doing business with and/or serving the needs of spousal caregivers (who care for a spouse or partner and are a special subgroup of family caregivers). As a healthcare non-profit the Well Spouse® Association also offers support to spousal caregivers.

Here's an opportunity to give back to both, and at the same time get more business.

By becoming a Professional or Corporate  member, or simply buying an ad on out site, you can advertise your skills or business on the WSA website, which is visited by many spousal caregivers every day.

This section of our website has information on the various forms of advertising opportunities we have, including:

  • A resource listing, for a modest annual membership fee
  • Banner, button or text-linked ads on the website
  • Full- to quarter-page ads in our bimonthly newsletter, Mainstay

  Visit the Professionals Directory

You can help us by using the coupons and links below to save money and, at the same time, a portion of your purchase will be donated to WSA.

Well Spouse in-person support groups are the preferred means of support for Well Spouse members.  They are run by WSA members who volunteer their time in this position to give back to others.  Being a group leader can be as much support for you as you are giving to the group.

If you don't have an established group in your area, consider forming one.  You will receive a leader's guide, help, and support from the Well Spouse office in getting your group off the ground and keeping it going.

Start a new support group today!

  • Registration Form 

Do not delete please!

The Well Spouse® Association, a nonprofit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner.  We offer peer to peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day. To achieve this mission the Well Spouse® Association:

  • coordinates a national network of Support Groups
  • facilitates a Mentor program
  • publishes a newsletter (Mainstay) 
  • hosts a website (www.wellspouse.org) with resources for coping and survival skills, which includes an on-line chat forum for spousal caregivers
  • organizes regional respite weekends and a national conference for caregivers
  • provides continuing support for members whose spouses have died
  • advocates on behalf of spousal caregivers
  • seeks out new initiatives to help caregiver spouses and their families cope with the emotional and financial stresses associated with chronic illness and/or disability

This section includes all the ways in which not just members, but their family and friends, the general public, corporate and charitable donors can support the work of the WSA.

The box on the right for Join or Donate has links to the WSA online donation general site, as well as to current fundraising campaigns.

Articles below describe special ways to donate. As well, we accept advertising on our site, which you can find out about here.

The Well Spouse® Association has partnered on the Web with a number of organizations that provide complimentary services to spousal caregivers.

We exchange links and articles with our partners, in order to bring each other's activities and services to the attention of people visiting either site.

In some cases the cooperation leads to setting up an exhibit table, or giving a presentation or workshop at the partner organization's annual or regional conference or other sponsored event.

The WSA is always ready to partner with other organizations. For further information, please Email This email address is being protected from spambots. You need JavaScript enabled to view it. or phone the Office at 1-800-838-0879.

The first ever Well Spouse® Association Annual National Conference was held in October 1988 at Pendle Hill, a Quaker retreat and conference center in Pennsylvania.

The impetus for the conference came from the book Mainstay: For the Well Spouse of the Chronically Ill. The author, Maggie Strong, whose husband had MS, and 12 other spousal caregivers assembled to share their stories and plan how to launch the Well Spouse Foundation (as it was then named).

The idea to form the group came from Maggie's book tour, where she met a number of spousal caregivers who spoke to her after the readings.  They realized her story was theirs in many ways, and with the deep satisfaction of having made this connection the small band that came together at Pendle Hill went home to spread the news about this new non-profit organization that offered support to a hitherto little-known and practically invisible group in society.

From the beginning, they recognized the value of coming together for face-to-face meetings -- in local area support groups that were set up by volunteers, in respite weekend events, and in the October national conference that quickly became a tradition.

In subsequent years, annual conferences have been held in different locations, and the local volunteer organizers developed varied programs to help well spouses:  workshops, social events around food and drink, special tours, a Friday night keynote speech, a Saturday night DJ and dance, and a Sunday morning spiritual session, culminating in the farewell circle.

Recaps of past conferences are available, and for more specific information on our most recent national conference, please read the following:

One of the most important things for a long-term caregiver to do is to arrange for him/herself a regular schedule of breaks from caregiving. For spousal caregivers, who have a different and more intense relationship with their ill spouse than other family caregivers do with their loved ones, it is doubly important.

These breaks, or respites, can be as little as taking 30 minutes or an hour a day for oneself to do an activity that has nothing to do with caregiving. For those who have retired to look after their spouse or partner, it is good to get out of the house (or hospital room) at least once a day, and it needn't be all about errands.

The Well Spouse® Association provides opportunities for supporting members to attend weekend respite events. Up to 20 or more well spouses attend these events and enjoy the opportunity to socialize and take in the attractions of the event locale. Many go once, then become regular attendees at respite events.

Events are organized by member volunteers -- if you are interested in having one in your area, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..

The following items feature legislative information and items of interest to those who advocate for spousal caregivers:

Some of the most savvy consumers of American healthcare (or of healthcare in any country) are spousal caregivers. All too often illness or disability renders their partner less able to deal with the multitude of decisions to make, costs to bear, doctors and hospitals to visit... and on and on the merry-go-round goes.

So in steps the spousal caregiver to help their ill spouse... For example, in this Reading Room section a WSA member presents her own personal comparison of the Canadian and American healthcare systems. Because her husband had Canadian citizenship, she was able to arrange healthcare for him there, once his Alzheimer's Disease moved in to disrupt their life together totally.

For Well Spouse® Association members and spousal caregivers in general, a good sense of humor is vital. There can be many tense moments in the life of a spousal caregiver, due to sudden emergencies brought on by an unpredictable disease, condition or disability -- the elephant in the room -- moments that can later be lightened by retelling them  with a twist.

For instance, Elizabeth Damick, in telling the story Swallowed by a Boa Constrictor compares her caregiving experience to this "...silly song kids might sing at camp, [that] made me laugh and relieved some of the stress I felt much of the time."

To a member of the public, family, workmate, or friend, who might liken spousal caregivers to inhabitants of some faroff, unfamiliar land, know that they are just normal people who find themselves in a difficult situation and are doing their best to cope. Their sense of humor proves the latter.

"If you are married to or a partner of someone with a chronic illness and/or a long-term disability, then you are a spousal caregiver / Well Spouse. It requires no specific degree of illness.  If your life is impacted by the health of, or by the care provided to your partner you are a Well Spouse.

Behind that simple definition lies a whole world of experiences that no other family caregiver has – and there are over 7 million current and former spousal caregivers in the U.S. alone who can attest to that."

This quote from the article of the same name answers the question, "Who is a Spousal Caregiver." For each couple it's an answer personal to the well partner -- and relative to how the couple's relationship was before the illness -- the elephant in the room -- arrived. There is no way to compare one's own caregiving with someone else's -- it is what it is.

Here are some book reviews written by WSA members:

Mainstay: For the Well Spouse of the Chronically Ill

With the kind permission of the author, Maggie Strong, we reproduce here selected chapters from the 1st edition (1988) of her book, Mainstay: for the Well Spouse of the Chronically Ill. "National Well Spouses. We don't exist, but why not? If such a group would interest you, send a postcard (no letters!) to National Well Spouses . . ."
 
The then-Well-Spouse-Foundation(WSF) was started in response to these words which appeared in the back of Maggie Strong's book, Mainstay, in March, 1988. Our name has changed since then, to the Well Spouse® Association but our mission remains the same.  In the last six years up till 2013 The Association has had nearly 2000 members in all 50 states, Canada and abroad! Let others who have "been there and done that" help you face the challenges of long-term caregiving.
 
Maggie Strong, on tour to promote the book, kept finding people coming up to her during or after book signings, to talk about how what she had written had resonated so much with them. The very first WSF group began in Delaware, led by Elaine Lepkowski and Debbie Hawke. Over the years the WSF grew, but since the name "Foundation" suggested it was a granting body, it was decided in 2005 to change the name to the Well Spouse® Association (WSA) to better reflect the mission of the organization, which is to offer support to spouses or partners of people with chronic illness and/or disability.
 
The odd-numbered chapters of Mainstay give Maggie's personal story, and they are all available to WSA members. The even-numbered chapters offer information on different diseases, financial matters, common emotions experienced by well spouses, illnesses' effect on marriage and children, and legal questions; and they provide interviews with other well spouses, as well as with medical and psychological professionals. Since a lot of the information in these chapters may now be outdated, we are offering only chapters 8 and 12.
 
The book itself is out-of-print; you can read it in the Members Only - Members Documents area, if you are a Supporting Member of the WSA.
 
You can read the Introductory chapter below.

The following are news stories published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2014. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2014. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2012. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2012. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2009. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2009. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2007. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

The following articles feature WSA, our members, and caregiving issues which have made news headlines in 2007. These news stories are published by Well Spouse Association and others. We record the original articles here for archiving purposes and include a link to the source article.

Address

63 West Main St, Suite H
63 West Main St, Suite H
Freehold, NJ 07728
Freehold, NJ 07728
Phone: (800) 838-0879
Phone: (800) 838-0879