We all know how hard it is to be a caregiver. Sometimes support for the caregiving spouse is the best way to insure the patient gets the best care. The WellSpouse Association offers the caregiving spouse or partner a much needed reprieve from the stresses and emotional burden of long term caring.
by guest blogger, Amy Shaffer Crawley, WellSpouse Association
The diagnosis of multiple sclerosis came on January 4, 1999—a scant two years after we were married. Jim was 36 and I was 38.
Although Jim had experienced symptoms for many years prior to that, he brushed them off as working too much or too hard, not resting enough, or poor diet. The diagnosis came as somewhat of a relief to him; for me, I had no idea what to expect. He told me to leave him; I refused. “We’re in this together,” I said.
By 2007 or so, he had declined to the point of needing a wheelchair. The weekly injection he was on for nine years was taking its toll in other ways; it made him irritable, angry, and depressed. He went off it and returned to being the man I fell in love with.
I thought I was OK. In reality, I was like that proverbial frog being boiled slowly; I was drowning in caregiving but not realizing it. Little by little, I began adding more and more chores and tasks to my life because he is/was unable to contribute: laundry, grocery shopping, and car maintenance. As he gradually lost some functionality—mainly in his legs—it is now incumbent upon me to help him with transfers: to/from wheelchair/shower/toilet and bed; in and out of the car. “In sickness and in health” can play games with your mind; it implies that one is supposed to be happy and joyful when cleaning up poop at midnight or seeing your spouse in great pain. However, the reality is very different.
I felt so alone. I was angry and resentful. Although I never asked, “Why me?” I did feel as though I was the only one going through this.
At the recommendation of a friend, I did a Google search for online support groups. Immediately, I found the Well Spouse® Association. I went to the website—www.wellspouse.org—and joined. As I read through the forum, I thought, “Wow! These people really get it!”
The Well Spouse® Association is the only peer-to-peer organization dedicated to providing emotional comfort to those caring for a chronically ill and/or disabled spouse or partner. We offer an online forum, newsletters, face-to-face and telephone support groups, respite weekends, an annual conference, and more. Our members’ ages range from 20s – 70s; the illnesses they are dealing with run the gamut: MS, Parkinson’s, Alzheimer’s, paralysis, cancer, dementia, and many others. We don’t judge; we don’t compare situations. We are all experiencing the same emotions.
The kinship that surrounds Well Spouse® is like no other. As one member said, it is the great equalizer. No matter what your status is – rich, poor, middle class; highly educated or high school diploma; blue collar or executive, all races and nationalities – we are all one under this umbrella. And, it’s precisely this umbrella that shelters us all from the storm that constantly surrounds us. When one member is caught in the torrent, other members jump in to rescue him or her. “Come with us. We get it.”
It’s because of this kinship that we all feel comfortable sharing the most intimate details of our daily lives; topics that are verboten with friends and family. With whom else could you openly discuss bowel programs/incontinence; intimacy issues; or even one so controversial: taking on a lover outside of your marriage?
Yet, that is the route that some of us take; our Well Spouse® family neither encourages nor discourages, preferring to remain neutral and supportive. Some ill spouses lose cognitive ability and/or physical functionality, leaving the well spouse adrift and craving intimacy. While Jim was on the medication, I considered it; it was a way of “getting back” at my husband, who seemed to have disappeared into a morass of anger and depression. Ultimately, it wasn’t the right choice for me; I realized that my anger would have transferred to this anonymous lover and that would not have been fair. Plus, I love Jim very much. I simply would not have been able to live with myself; the guilt would have eclipsed any hope I might have had for a strong marriage.
Caring for an ill spouse is different from caring for a parent or child. You’ve lost your partner in life; you’re “married but not married.” Those who have children while caring for an ill spouse find themselves in the role of single parent. Growing old together and seeing the world is not an option. Your days are filled with doctor visits, trips to the ER, handling of medications, and ensuring that your spouse has his or her needs met. Many well spouses are learning and performing tasks that medical professionals get paid to do. Often, we’re “it.” Aides are unreliable or unwilling to do actual work.
And therein lies the caveat: As caregivers, we are often so concerned about our spouses that we forget that we have needs, too. Our members are fond of telling one another to take care of you. Go for a walk. Get a massage. Meet with a friend. You simply cannot be a good caregiver if you don’t take care of yourself first. The members of Well Spouse® sometimes encourage one another to seek professional help—as I have—or gently suggest antidepressants. We recognize that we have our limits when it comes to issues that must be discussed with a qualified healthcare practitioner.
We have to be ever more vigilant in ensuring that we stay healthy, and that can be exhausting. Caregiving takes a huge toll on the caregiver’s physical health; I have had some serious back issues—due to constant lifting and transferring—to the point of being in severe pain and unable to care for myself, let alone my husband.
The strength I have gained from a combination of weekly therapy sessions and my involvement with Well Spouse® has enabled me to create a strong marriage to Jim. Through both modalities, I have learned to articulate my needs; as a result, Jim and I have a very good, solid marriage. He is sensitive to my needs and is very willing to work with me to ensure that I don’t get burned out or overdo it. He encourages me to get massages, manicures, or meet friends for dinner. In that regard, we are rare.
My life does not have to revolve around my husband. I am a person who has the right to develop hobbies, travel, and socialize. Well Spouse® has helped me to see this with clarity.
Amy Shaffer Crawley balances spousal caregiving with her job as a seminar coordinator, and her side business doing tarot card readings, healing work, and psychic mediumship. She lives in Queens, NY.
For more information on the Well Spouse Association go to www.wellspouse.org or contact Amy at firstname.lastname@example.org
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