They are the unspoken heroes of any town. You don't see them around much; they are not often out and about. They work tirelessly, long hours, mostly for no financial gain and sometimes little thanks. Theirs is a true labor of love because it's a job nobody wants. They won't admit it, but often they feel trapped in a position that launches them powerlessly slipping down a slide into a dark abyss, where the only savior from the life sentence is death itself. They are the caregivers.
They now number a staggering 65.7 million Americans, or just less than 30% of the adult population. On average, caregivers work 20 hours per week. As you might imagine, 2/3 of the caregivers are female, caring for parents, spouses and special needs children. As above, they are rarely compensated; worse, the average caregiver of someone over 50 spends over $5500 annually on their care recipient. (AARP, 2008 Insight on the Issues, 13; Nov, 2008).
It's not just time, energy and money. Caregivers also pay for the privilege of giving care with significant health issues. The Journal of the American Medical Association (JAMA) reported that "highly strained" caregivers were at risk to die prematurely, often before the care recipient. (JAMA, 1999) A more recent study replicated those findings, but added the following: caregivers are also at risk for coronary maladies and strokes, especially when strained by their caregiving duties and responsibilities. (Haley, et al., 2010)
Caregivers, according to the National Alliance on Caregivers (2005), tend to disrupt their educational pursuits, postponing their schooling or, in many cases, dropping out altogether. The latter is nicely depicted in Tracy Chapman's mega-hit song, "You Got a Fast Car" (1988). Chapman describes a family situation where her father had a problem "with the bottle", culminating in a broken marriage. She responded :"I said somebody's got to take care of him, so I quit school and that's what I did."
Likewise, caregivers tend to deny themselves important aspects of self-care. That is, due to the endless responsibilities of caring for a loved one, caregivers are less likely to emphasize their own health needs, like good nutrition, adequate rest and especially exercise. (Schultz, 1997) Naturally, the lack of good self-care weakens the caregiver's immune system and makes them significantly more susceptible to the aforementioned illnesses. And just in case that's not enough depressing news, there's more- caregivers are significantly more likely to endure verbal abuse from their care recipient, (Erosa, et. al, 2010) often culminating in an eroding self-esteem, quiet resentment, and feelings of depression and hopelessness.
So, is there a morsel of hope anywhere for our unheralded pillars of the community? Are there any words of wisdom to support our local support system?
Actually, yes. Web MD offers seven tips for people with ill and/or elderly family members that are worth summarizing here with some additional input from this author:
1Begin the conversation about how to respond as a family BEFORE an older parent gets sick. Create a plan in advance.
2Look for Caregiver Guidance, like The Red Cross and National Family Caregivers. Locally, check out The Senior Friendship Center as a refuge for the older care recipient to spend time engaging with other seniors in a variety of meaningful activities, like art, music/dance and board games.
3Consult with other caregivers in a support group. Call each other, go to lunch together. Connect with the people who truly understand what you're going through.
4Find help from others to share in the caregiving. Get your siblings involved, where possible. It's their parent, too. Get volunteer support from the members of your local house of worship. Pay sitters, if necessary. A little respite goes a long, long way to revitalize the caregiver.
5Check out local senior care facilities including home care professionals,and nursing homes in advance. Be prepared for the possibility/reality that home care may one day be impossible, especially if you are flying solo as a caregiver.
6Always consider financial and legal implications in advance. Discuss wills, estates and all practical matters with family members, attorneys and CPA's, the sooner, the better.
7Finally, do your research. You wouldn't take a week long vacation without investigating the journey and the destination. Similarly, don't attempt the voyage of caregiving without knowledge and appropriate preparation.
Remember, caregiving can be meaningful and rewarding if you remember one important factor: taking care of the caregiver first will equip you to take better care of your loved one.