Caring for the caregiver

Just tonight I found a website directed at people who are caregivers. I love Aaron more than I can ever say and honestly would have a hard time turning care for him over to anyone else because, of course, no one can take care of him like I can.
On the website, www.strengthforcaring.com, I found a description of caregivers that I found to apply to me more than I would like.

CANCER CAREGIVERS

A study from the Journal of Family Nursing (JFN, November, 1998 Vol.4, Issue 4) provides a glimpse into the life of a cancer caregiver. This study examined caregiver characteristics and needs through a questionnaire administered to 750 cancer caregivers who participated in the University of Pennsylvania Family Caregiver Cancer Education Program.

Who Are the Caregivers

Are you taking care of a loved one with cancer? You are not alone. More than 1.3 million cases of cancer are diagnosed each year. Studies suggest that at least 50 percent of those diagnosed with cancer will be cared for by someone in their immediate family.

Who are the cancer caregivers?

• 82 percent are female
• 71 percent are married
• 61 percent have been providing care for less than six months
• 54 percent live with the patient for whom they are caring
• 47 percent are more than 50 years old
• 36 percent reported caregiving took more than 40 hours of time per week

A Day in the Life of a Cancer Caregiver

What don’t you do? As a cancer caregiver, you spend your days preparing meals, cleaning, providing transportation, talking to health care providers, administering medication, and making sure their loved one gets everything they need. Cancer caregivers find the time to do it all…everything but take care of themselves.

Consequences of Cancer Caregiving

The Journal of Family Nursing study detailed the impact of providing care on cancer caregivers’ physical, emotional, and financial health. The results are staggering, and indicate that the caregiver needs to take care of his or herself.

Physical

• 70 percent reported taking between 1 and 10 medications per day
• 62 percent said their own health had suffered as a result of caregiving
• 25 percent reported having significant physical limitations of their own

Emotional

• 85 percent reported that they resented having to provide care
• 70 percent said their families were not working well together
• 54 percent visited friends and family less since assuming their caregiving role
• 35 percent said they were overwhelmed by their caregiving role
• 97 percent said their roles were important
• 81 percent stated that they wanted to provide care and could not live with themselves if they did not assume caregiving responsibilities

Financial

• 46 percent reported inadequate financial resources
• Caregivers frequently missed as many workdays as those patients for whom they were caring, according to a survey conducted by the Fatigue Coalition (a multidisciplinary group of medical practitioners, researchers and Patient advocates), and funded by Ortho Biotech Products, L.P.

Not many of you who read this know exactly what our reality is like. We can try to go along with "normal" life but no matter what we do, at some point or points in the day, we will think about how long or how little we have left, what we'd like to accomplish in that time, what prescriptions need to be refilled for the week, what side effects are worse this week, what side effects or pains are new that day, as well as come up with dinner, do laundry or dishes and any other thing that may come along that day. I'm not necessarily complaining as just putting the facts out there.
I guess I say all this because someone made a comment about, now that I'm not working I should have a lot more time to get things done. I know it was not meant in any sort of harmful way and was probably meant to point out that I have one less thing to think about and shouldn't be as stressed. The reality is I discovered that people really don't know how our life is and while, yes, I don't have to go to work anymore, that has been replaced by trying to find a job that will take on a new employee knowing they will need time off as well as come up with money for bills that were payed with my now nonexistent paycheck.
I hope those of you who read this post see it informational and not as pointing fingers.
Nothing is harder than caring for the one you love knowing that no matter what you do they are still going to die.