The Well Spouse Association: Who Cares for the Caregivers?
In today’s post, Colin examines an important type of caregiver: the significant other or spousal carer. Health Activists often discuss how important the support of spouses, boyfriends, girlfriends, partners, and loved ones is to your overall well-being. Finding love and support is essential. But illness and health issues add strain to even the most loving relationship. Imagine adding caregiving to the mix. How do spouses provide their loved one with the care they need while finding strength and support of their own? One way is by interacting with the online community and connecting with other caregivers. To learn more, Colin interviews two key members of the Well Spouse Association – an organization that advocates for this group of caregivers – to hear their thoughts on spousal caregiving, caregiver support, and more. –Amanda
by Colin DeMatteis
This week, I had the chance to sit down with a few members of The Well Spouse Association, a large network of support groups tailored to helping spousal caregivers (aka Well Spouses) by creating a community that recognizes a full-time caregiver’s oft-forgotten needs.
I spoke with Terri Corcoran and Larry Bocchiere. Corcoran has been a Well Spouse for nearly 12 years and a Co-Editor of Mainstay: The Well Spouse Association’s quarterly publication that features a collection of member-created and stories. Bocchiere is the current President of WSA and an experienced Well Spouse.
WEGO Health: How did you get involved with the Well Spouse Association?
Terri Corcoran: I am, unfortunately, a Well Spouse. When we married I was 60 and he was 76. A month after I married my husband, he fell down and no one knew why. He was playing golf and he just fell. Then the falls started to become more frequent. He started to have cognitive symptoms that, in retrospect, we could see had been developing for some time.
Larry Bocchiere: My wife has suffered from emphysema for sixteen years. A few years ago she was having a lot of exacerbations: she was in and out of the hospital for four months. She was going to various rehabs, nursing facilities, and hospitals and I was quite honestly at my wits’ end. Fortunately, I found Well Spouse – as many different members do – when I’d kind of reached a low point. I was searching on the Internet for support for spousal caregivers, and I happened upon Well Spouse.
Terri: We found out he has Fragile X-associated tremor/ataxia syndrome (FXTAS). This wasn’t even recognized as a syndrome until 2001. In old age it turns toxic. By the time he was diagnosed he needed full-time care and I stopped working to take care of him. He would fall down and not know that he needed help.
Then in 2005 I just got really, really burnt out and someone told me about the Well Spouse Association. Most caregiver support groups are for people taking care of their parents, but this is different. This is my husband. With your parents, it’s sad to say, but you can kind of predict that they are going to need care as time goes on, but this was man I married. He was part of my day-to-day life.
WEGO Health: What are some of the most common challenges facing members of your community?
Larry : Spousal caregivers face a different paradigm than most others. If you’re caring for an ill child or a parent, you can still go home to your spouse and support network and feel comfortable there. A spousal caregiver doesn’t have that option.
Terri: It’s physically exhausting. These are long-term issues – our members aren’t people who are having surgery and are then going to be okay. These are people in for the long haul. Sometimes you are essentially alone. We call it being a married widow or widower; you go to everything alone. The experience of losing a spouse even though they’re still there. In cases like my husband, where they don’t talk much, or if a spouse has dementia, Well Spouses can end up living either essentially alone or with someone they don’t know anymore
Larry: Often spousal caregivers lose friends. Honest, we’re not contagious. I know it’s sometimes hard to deal with us because we can’t do everything we used to, but friends tend to fall by the wayside. Sometimes family is wonderfully supportive; I have a great sister-in-law with 2 wonderful children. Other times in-laws or children might be in denial, or don’t want to be involved. Others, for their own reasons and their own families, can’t be involved.
Terri: It’s a financial challenge too. If you have to stop working and take care of them it can be very expensive. A lot of couples become impoverished and some couples divorce just to keep some assets1.
Larry: I had to retire early to care for my wife. As an ex-federal employee, unfortunately, I do not qualify for Medicaid. So everything my wife needs that isn’t covered by private insurance is covered by private pay… my wife is not on any drastic medications or any high priced ones, but she does take fifteen medications per day. She’s not on any anti-cancer drugs or any modified genetic drugs; I’m still out of pocket about 15 thousand dollars per year.
WEGO Health: What do caregivers look for in groups like Well Spouse?
Terri: It’s just sharing support. There are a number of [Well Spouses] who are younger and have spouses and children and sometimes parents they care for too. I don’t know how they do it, but we offer suggestions and ways to cope and sources of help. They have access to a whole community of people having the same problems as they are and it helps to share.
Larry: No one knows us like another Well Spouse. That’s why when I attended my first support group meeting and looked into the eyes of five other people and they told me, “hey you’re really normal; the thoughts you’re having are normal,” that helped me to realize I can work through this, I can help my wife.
Terri: The people in care groups turn into your best friends. They understand things. And we even have people whose spouses may have passed away that are called ‘Former Well Spouses.’ They stay with the group and help other Well Spouses work through many of the same issues that they had to work through, whether it’s dealing with burn-out or losing the one they care for. And we can see how they dealt with things; how they are coping and grieving. It can give others strength to know they’re really not alone; others have gone through this before and survived.
WEGO Health: How can Health Activists and bloggers bring that support online?
Terri: Seek them out and listen to them. Invite them to blog about it. We just need anybody who will listen to us. There are a lot of advocacy groups out there too. We try to get the word out about Well Spouse and in turn hope those people will also spread the word. Anybody who is doing any type of advocacy for caregivers in general will be helping.
Larry: I think just by talking about the amount of people there are. There are 7 million of us, counting current and former spousal caregivers, and often they work in anonymity.
Terri: If you know someone who is working as a caregiver, ask them how they are doing. A lot of times doctors and people around the caregiver forget to check on the caregiver as well as the patient. You come to really appreciate a doctor or a friend who remembers to ask how you’re doing or how you are coping.
Larry: Honestly, before I was a caregiver I paid scant attention to people in walkers, wheel chairs, and people needing assistance or parked in handicap spots. I think that it’s a survival mechanism. People tend to overlook that and think, “This could never happen to me.”
Terri: A lot of spouses don’t even realize they are caregivers. It just kind of happens. Your spouse gets sick and you just take care of them and you don’t realize that it is so difficult and it takes a toll on you… When you’re caregiving, you’re stuck in and you’re not communicating. If not for the Internet, other people wouldn’t know about caregiving or the strength it takes to be a spousal caregiver.
Larry: We need help from the government and from agencies that get the word out. To spousal caregivers, you’re not alone, you can find help, and you can find camaraderie. And, in the Internet age, blogs are the best way to reach new and potential beneficiaries in our search.
The Well Spouse Association has been around since well before what we’ve come to call “The Internet Age.” Joann Landers, leader of the Well Spouse support group in Springfield Illinois, has been a spousal caregiver for over 30 years.
“Balancing a full time job, three children and caregiving, I was tired, lonely and afraid. Back then we didn’t have the internet but receiving Well Spouse publications let me know that there were people out there with the same struggles. The Springfield group started when three of us met at a support group for MS that we had taken our husbands to. We complained that there was nothing for us and decided to do something about it. The help, support, and ability to vent was priceless, as it still is today.”
While wrapping up this article, I originally wrote the ending as ‘groups like WSA have become increasingly important as public knowledge of caregiving stress and burnout grows,’ but that is not the case. Although the support groups may be relatively new, the need for support is not.
All caregivers, but especially family caregivers, face the dangerous possibility of losing themselves in the act of caring for another. Their lives become enveloped in their task, and while many can successfully embrace the “new normal” of daily caregiving, few adapt to their new lives with ease.
Contrary to what we expect, becoming a caregiver is not the same as becoming a saint. Too often we expect spouses to become both selfless and invisible: their needs are no longer important, and their wants must be put aside.
Caregivers need not be saints. They cannot be devils, surely, but there is nothing wrong with being human – a fact The Well Spouse Association wants Health Activists, bloggers, and readers to keep in mind.
1 So called “Medicaid Divorces” allow one partner to keep all assets while the other will be declared financially destitute, which allows the “impoverished” partner to qualify for Medicaid. For an excellent account of this, read more at http://www.huffingtonpost.com/hillary-st-pierre/i-considered-a-medicaid-d_b_816668.html