Caregiver's Post for Fem2.0

This post was written as part of Fem2.0's Blog Carnival about caregiving.

"Over the next couple of weeks, Fem2.0 is partnering with the National Family Caregivers Association and the Christopher and Dana Reeve Foundation to start a fresh discussion about caregiving and women." Click on over and become part of the discussion!

Over the past 10 years, I've been a nurse, a mental health outreach worker, a stay at home mom, a group home worker for adults with devlopmental disabilities, and a companion for seniors with dementia.

In all my roles, I've watched so many caregivers, the majority of them women, squeeze blood from an ever-drier stone in order to meet the needs of their families.

I've sat at many bedsides, and many kitchen tables, listening to women who were afraid they were on the verge of dropping some of the one-too-many plates they were juggling. Women who knew they were the best able to provide care to their loved one, but who couldn't continue on indefinitely without respite. Women who worked 24 hours a day, seven days a week at the most diffcult job in the world, and didn't receive a penny in financial compensation.

I will never forget a mother in her seventies who was the sole caregiver for her son who had both Down's Syndrome and Alzheimer's. At seventy, she was transferring him from his bed to his wheelchair, changing his soiled Depends, feeding him, and bathing him. Up at 7 am and in bed at 9pm, all without a break.

I will never forget the daughters of an ICU patient, who spent weeks sitting in their mother's room, waiting for the doctor to make rounds, writing down questions, filling out paperwork, spoon-feeding her ice chips. It was the daughters who stepped up and learned how to care for her colostomy and change the bag, who took leaves of absence from their jobs, and prepared to take their mother home.

I will never forget the daughter of another patient, a patient who had been given a poor prognosis, in tears because the small company where she worked would not grant her a leave of absence, and she had to choose between losing the job she needed and leaving her dying mother.

Although I have met a few very devoted and hands-on male caregivers (I would count my own husband, who is sometimes my own caregiver, as one of them), by and large, the person who spends hours in the hospital room, monitoring the child with special medical needs or mental illness, consulting with doctors, bathing, feeding, and dressing, giving medications, and filling out insurance paperwork, is a woman. A very tired woman.

I've worked long hours and endured hard physical and emotional burdens in my professional caregiver roles. Despite that, I did get to leave that role behind every night. I had several days a week to myself, to recharge enough to be fully present as a caregiver to the people I served.

Family caregivers don't have that option- and they need it. They need respite on a regular basis. They need compensation, especially the full-time caregivers. There is a huge move underway in the past few decades to stop warehousing people who are ill or disabled, and instead meet their needs wherever they are in the community. It's more cost-effective, and more humanizing. One study places the value of informal caregiving, the work female family caregivers do every day, at $196 billion. If a Medicaid program is willing to pay $70,000/year for nursing home care, why not pay a full-time family caregiver $25,000/year, plus an allowance for regular respite care? If there are so many of us taking on this extra load, why aren't we uniting to ensure that our needs are met as well?

Most of us don't plan on becoming a caregiver of this magnitude. However, life happens, and a child is born sick, or a spouse is seriously injured in an accident, or a parent develops dementia. Letting the ball drop is simply unacceptable, and we find ourselves adding the responsibility. It can be easy to say, "let them shift for themselves", but that day may come when you must be on the receiving end. Would you rather live at home with your family, or in a group home or nursing home, with strangers attending to your basic needs?