The Caregiver's Gift

By Jon Temme

Providing for the of someone with multiple sclerosis (MS) or any chronic disease has the potential to be deeply satisfying. Often, in the course of facing an unpredictable disease together, loved ones and friends are drawn closer together, and profound insights about life emerge. However, it must also be acknowledged that on any given day, the demands of caregiving can seem overwhelming. How can one appreciate life when the laundry needs to be washed, appointments need to be made, a complex and fractured community healthcare system needs to be navigated, and you’re being woken up at 2:30 a.m. to change the sheets?

WARNING SIGNS ON THE ROAD TO CAREGIVER BURNOUT

The road to a balanced life for any caregiver begins with recognizing signs that you may be overwhelmed. What may start out with isolated negativity may progress to burnout or resentment. Are any of these situations familiar to you?

* You become tired of everyone asking, “How is X doing?” You wish more people would ask about your well-being.

* Your appearance, attitude and temperament have all taken a beating. You have a short fuse and feel like you could snap.

* You are feeling isolated. Your world is getting smaller and you have fewer and fewer social interactions.

* Anger is bubbling to the surface. The situation feels unfair and hurtful words are being spoken during the provision of care.

* You’ve abused—even in a small way—the one you are caring for. Perhaps you scrubbed your partner a bit too hard in the bath or you were too rough in dressing your loved one for bed.

* You feel guilty for going out with other people and doing things you used to do together.

BALANCE ALONG THE CAREGIVER’S JOURNEY

These situations may arise because, when a disease like MS invades a family’s life, the relationship between loved ones can shift dramatically.

Usually, a spouse, child or parent unexpectedly becomes responsible for the day-to-day well-being of another, as well as the executor of key personal affairs. This creates a potential imbalance of power that the caregiver may grow to resent. The added responsibility can be distressing, and emotional and physical burnout may result.

What can bring support to caregivers along their journey? Thanks to a recently completed five-year project in support of caregivers of those with MS, the MS Society had the opportunity to hear directly from caregivers regarding their needs and valued supports. Some key insights:

* More than half of the caregivers reported that caregiving negatively affects their own health.

* Support provided to caregivers usually resulted in positive outcomes and enhanced quality of life, not only for the caregiver, but also for the person with MS and other family or support network members.

* Ninety-five percent of caregiver respondents assigned a high level of importance to being able to choose the service or activity that they felt would meet their self-identified, caregiving-related needs.

* Caregivers indicated that ongoing access to support systems is needed to sustain their own positive health.

* Supports that caregivers identified as enhancing quality of life included: recognition and appreciation of the caregivers’ role, needs and voice.

In short, the caregiver needs attention too. To be at peace with one’s role as a caregiver requires both personal strength and patience. Most importantly, it requires the acknowledgement that as a caregiver, you need support yourself. Seeking out this support from others in your community is the best gift you can give to the one you are caring for.

The Multiple Sclerosis Society of Canada has formally developed a Strategy for Supporting Caregivers. Going forward, all areas of the MS Society will actively recognize and include caregiver needs in its programs and activities.

Advice from Other Caregivers

To cope with the challenges of being a caregiver, consider the words of others who have been or currently are in similar situations:

* Recognize that self-care is a necessity, not a luxury.

* Recognize that self-care doesn’t just happen; you have to plan and schedule in order to have time for yourself.

* Recognize that you can’t change some things about your situation (that your family member or loved one has a chronic illness), but that you can make choices about the attitude you have toward your situation.

* Communicate openly with others about your needs, especially with the one you are caring for.

* Seek support from others who will validate and encourage your commitment to your own self-care.

* Explore your options. We are all unique individuals and your self-care should reflect that uniqueness.

* Take it one step at a time. If you have decided that significant change is required in order for you to achieve more balance in your life, don’t try to do it all overnight.

(Adapted from an article originally published in Moods Magazine, February, 2006.)