May 13th, 2011 at 8:05 am
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Spousal caregivers find support but need more attention

by Carol Bursack

As a newspaper columnist and forum moderator dedicated to caregiver support and aging issues, I often hear complaints from well spouses caring for their mate. These folks want to know why most of the online support, and many of the in-person support groups, are dominated by the adult children caregivers.

These complaints are well-founded. The Well Spouse Association is the only website that I’m aware of solely dedicated to spouses of those with health issues. There may be other sites, and I’d be happy to hear from them, but they are few and far between. As a writer, I’ve often intentionally included spousal caregivers in my articles, and many of my articles apply to all types of caregivers. However, I’ve certainly dedicated less space to well spouses than adult children. One article on Eldercarelink.com, titled Spousal Caregivers Need Support: How Different Are Their Needs From Adult Children Who Are Caregivers?, was specifically written to close this gap to some degree.

Spousal caregivers often write notes to me with feedback and tips, as do people caring for adult disabled children. After all, caregiving is emotionally and physically challenging no matter who your care receiver is. However, each group of caregivers deserves attention, as well.

Spousal caregivers have some unique support needs

An excellent article by Alix Kates Shulman for the New York Times titled “Caring for an Ill Spouse, and for Other Caregivers,” addresses the issue of support groups specifically for spouses. Shulman’s article focuses on the immense benefit of in-person support through meeting once a week or so to share stories and experiences. The value of these face-to-face meetings is expressed wonderfully by a spousal caregiver who said, “We speak of feelings and problems too sensitive or fraught to discuss outside. We recount the disappearance of old friends, whose discomfort around our spouses keeps them away. We mourn the loss of companionship and sex.”

Support for spouses is available online and in person

Shulman also mentions online support. During my most intense caregiving years, going to a in-person group meeting would have been just one more thing to do. I didn’t have enough time as it was. I was a sandwich generation caregiver before there was a term for people caring for young children while they simultaneously cared for elders. Time for a meeting? Not really. I would have benefited from much of the online support available today.

Shulman’s article suggests that if you are looking for a spousal caregiver support group you can “contact theAlzheimer’s Association, your local hospital or the Well Spouse Association, a nationwide group for people caring for spouses or partners.”

I echo her advice. Also, keep reading everything you can. You’ll recognize your own issues by reading the stories of other caregivers either online or in books. Mutual sharing between caregivers is one of the great tools caregivers use to stay afloat. When we know we’re not alone with our thoughts and our problems we lighten the load by half. Talk about it. Read about it. Write about it. You’ll soon find out you are breaking your own isolation by helping yourself as you help others.

Posted in Caregiving, Support | 6 Comments »
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6 Comments to “Spousal caregivers find support but need more attention”

  1. Larry Bocchiere

    The Well Spouse is as important as the Ill Spouse. We need to keep balance, avoid depression and burnout, and care for our best friend, lover, half the team that raises the kids and keeps the house. We face financial ruin in many cases, lose work and need help with the kids. At the Well Spouse Association we provide peer-to-peer support for the caregiving spouse. Remember – you need to put your oxygen mask on first!

    Spousal caregivers even lose support that is available in ‘normal’ marriages – if you are caring for a parent at least you can return to your mate and receive succor. In the case of an ill spouse that is impossible.

    Remember … “You are not alone” 3,500,000 current Americans are caring for their ill or injured spouses!

    Larry – President of the Well Spouse Association (a non-profit organization)

  2. Bonnie

    I too am a wife caring for my husband who has several different “things” wrong with him. You are correct in stating that caring for a spouse is much different than adult children caring for a parent. I know that our “kids” know there are things wrong but the only one they ever ask about is Dad, not me because they think I am well and able to care for him. My husband will act like all is fine and dandy when friends or family call but is completely different with me. He doesn’t remember some things so when I remind him of certain things he will say that I’m hiding things from him or not telling the truth about whatever the subject may be.

  3. Hi,
    You are not alone with your depression. The situation you describe is so common and heartbreaking. People who haven’t been in your shoes don’t understand – they can’t. I would suggest the Well Spouse Association (the link is in the article). There you will find people who know what you are going through.
    I also hope you will see a doctor about your depression and perhaps speak with a counselor or spiritual leader about your (rightful) feelings of abandonment. Your family and friends could use some coaching to help them understand that your are as much a “victim” as your husband.
    Please keep checking back so we know how you are doing.
    Carol

  4. I. Pacitti

    Have tried to connect with caregivers’ groups, but as always they turn out to be about the ill spouse. I have been caring for my stroke-ridden husband for 8 years. Family and friends have either abandoned us, or care only about his well-being. I am beginning to feel like a non-person. Am dealing with depression, among other feelings.

  5. Hi Anita,
    Spouses certainly have a different experience than adult children, even though much of the practical advice is common to both. I think one reason adult children dominate on the Web, is that many spouses are not of the Internet generations. My newspaper column (print) has a large following of spouses, as the format is traditional. That said, many more spouses like you are coming online daily.
    As you know, the grieving doesn’t wait until death happens. It’s from when the symptoms occur, and forward that your grieve Grief is long and protracted.
    My dad was thrown into severe dementia due to a failed brain surgery. While, we – his children – grieved, it was a different type of grief than my mother’s. She had to watch her spouse of over 50 years, the once dignified man she had loved since she was in high school, behave as though he were a different person. She struggled the entire decade, until his death (and after, of course, but that was a different kind of grief).
    My goal is to offer more information for spouses on Eldercarelink. The Well Spouse Association has asked me to be an Honorary Board Member, and I’ve accepted. So, I will be learning from people like you.
    Thank you for commenting, Anita. Please stay in touch and let me know how you are doing.
    Take care,
    Carol

  6. Anita Porpoise

    I just finished caring for my elderly mother with Alzheimers. I didn’t have family, and friends couldn’t relate. So the online community was especially helpful, because I could still be caring for my mom while communicating with online caregivers.
    I met probably more Adult children caregivers then spouses. And you could definitely see that there are major differences between Adult children and spouses.
    I remember an Adult children excitedly posting that she went to her mother’s nursing home and they decorated for Valentine’s Day and had a party. She posted all this and wished everyone a Happy Valentines.
    All I could think of is that it must be one of the worse days for spouse caregivers, especially dealing with dementia where the spouse doesn’t know who you are.
    Again I was caring for my mother and found that NOT celebrating any holiday was better for both of us. And my mom was Catholic, but she didn’t know who God was or what religion was.
    I wonder though if spouses dominate behreavement groups?

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