Caring for the Carers

Nursing is an art: and if it is to be made an art, it requires an exclusive devotion as hard a preparation, as any painter's or sculptor's work; for what is the having to do with dead canvas or dead marble, compared with having to do with the living body, the temple of God's spirit? It is one of the Fine Arts: I had almost said, the finest of Fine Arts. ~ Florence Nightingale

Nurses are paid for their work in the fine art of caring for people, but not all caregivers are on salary, and many do not have the luxury of time off to regain strength and energy for this strenuous task.  Family is a great resource for caregivers, many of whom are unpaid full-time carers.

Often people become caregivers, not as a professional choice, but as a result of family circumstance. A spouse, a parent, a child or favorite relative may have an accident or illness that results in the need for a part- or full-time caregiver. Family members are great for this role. They often want to help anyway, and what better way than to help with daily life activities and become a caregiver?

Caregiving is a major commitment that takes time, energy, and patience and is personally rewarding. Nevertheless, it takes a major emotional toll. Everyone needs a break sometimes and especially the untrained caregiver who took the job for love. Caregivers may not be chronically ill or disabled, but they are still trapped by some of the same restrictions. Some are on call ALL the time and cannot take off without risking the health or safety of their cared-for loved one.

Being a caregiver for a chronically ill person is a burden. Using my condition as an example, I found research that shows MS caregivers experience high levels of distress and low quality of life. A highly stressed caregiver is not a healthy person and is likely to make a mistake. Caregivers deserve a break and hopefully it comes before they reach their breaking point, but that break requires more than just a schedule note. The support system, in turn, must be supported.

The:Lifespan Respite Care Act was passed by Congress and signed into law in 2006 authorizing funding and training for respite care. The intention was to strengthen these support systems and to improve the relationship between the caregiver and the care-receiver by revitalizing and avoiding burnout. The act has been approved, but the funding is yet to be provided.

This year, an amendment to the Senate Budget Resolution was passed in March reserving $53 million for Lifespan Respite programs in the Federal Budget, but that does not guarantee the funding will make it to the final cut. We need to remind our senators and representatives that this funding is important to keep our support systems viable. The National Multiple Sclerosis Society (NMSS) has offered a helping hand for those who want to contact their representatives in the House and Senate. Using a zip code to pinpoint appropriate recipients, a page provides standard text as well as space to enter a free-form message. 

Some of us in the disability community require carers so we can continue to live ndenjoy our lives. The irony is we have to take care of our caregivers so they are strong enough, physically and emotionally, to continue caring for us. Funding for the Lifespan Respite Care Act is one way we can support our support system.

For more information, check these links:
Lifespan Respite Care Act signed into law Dec. 21, 2006 (PDF full text)
National Respite Coalition News
Chapel Hill Training-Outreach Project - all kinds of information about the act, including a summary, and links associted with the act and with the Chapel Hill Respite Programs
Track the bill
History of the act, including links to related bills
NFCA summary
National Family Caregivers Association summary of the act and other NFCA links
Family Caregiving Resources
List ofsome organizations that help find respite care around the country