When Do You Become a Caregiver?

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Some caregivers live with their vulnerable elder or spouse in the same home. Other caregivers go to the home or apartment of an aging loved one to provide care. Then there are people who provide mostly emotional support and administrative oversight while their loved ones live in assisted living or a nursing home. Others are long-distance caregivers who must hire people to do the physical caregiving while they are juggling caregiving oversight with their marriages, children and jobs in another city.

All of these people are caregivers. Whether or not they are caregivers in the legal sense that they can file for benefits or qualify for respite care isn't what we're considering in this article. We're looking at the emotional investment of caregiving as well as time and physical presence. Additionally, there's no way to overstate the role of the advocate in a vulnerable person's life. This role may be one of the most important ones we play no matter how much or little we are physically present to provide hands-on care.

Caregivers can get drawn into their own version of the "mommy wars" if they start to compare time spent in the presence of the care receiver to quality of care. We need to be careful to avoid nit picking and support each other as caregivers no matter what the differences in our situations may be.

Was I a caregiver?

My first care receiver was an elderly, deaf widower who lived next door to me. After five years of my being the caregiving daughter he never had, he died. Shortly thereafter, my childless aunt and uncle needed significant help and soon after, one at a time, my parents and in-laws became frail and needy.

I visited my ailing loved ones daily in their apartments and, for some, eventually the nursing home. I was the family shopper and errand runner. I rode ambulances to the emergency room more times than I like to remember. I helped my mom with showers and meals and medical appointments and tried to help my dad sustain a reason to live after surgery destroyed his brain. All of my involvement, from my providing the most intimate physical care to being a part of a caregiving team was important, but I know that one of my most vital roles was that of an advocate throughout the many changes my loved ones endured.

During my advocacy struggles I learned that I had more courage than I ever dreamed. I attracted the wrath of a couple of egotistical doctors and took flack from some harried, rude nurses and seemingly uncaring social workers. Thankfully, the vast majority of the people who worked with my elders were wonderful doctors, nurses, certified nursing assistants and social workers for whom the term "angel" is not an exaggeration.

I fought with insurance companies, found out how difficult it could be for a World War II veteran to obtain the help he deserved and learned how to cope when the family income is "spent down" for nursing home bills. I struggled through tangles of red tape that I never dreamed I'd need to handle. I worked with helpful government and insurance employees and was stonewalled by others. I won some. I lost some. But I did my imperfect best.

Are you a caregiver?

In the end, my elders were all well cared for. Other adult children may have approached each step differently than I did. They may have found a way to take at least one of the elders into their home, even though they couldn't take them all. They may have hired more help than I did – or less. Each individual within each circumstance is unique.

For decades we caregivers were largely an invisible army struggling to sustain our vulnerable loved ones with little support from the outside world. Awareness has improved. An AARP survey found, in 2008, that there were more than 34 million unpaid caregivers who provide care to someone age 18 and older who is ill or has a disability. This number has grown and will eventually explode as our population ages. However, even though there's more awareness now than in years past, caregivers still don't have nearly as much financial help and social support as they need.

Are you a caregiver? I believe that a caregiver is a person who takes on at least some part of the responsibility for the welfare of someone sick, elderly or disabled. If the title fits, wear it proudly, my friends. Whether or not you are providing hands-on care, if you are doing your best to be an advocate for the vulnerable people or person in your life, you are a caregiver.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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6 Comments

i had to quite my job care for my husband he has terminal lung cancer. i need so help with financial .i wasthe sole provider.
i dont care if you beat your patients with a lead pipe ms bursack. i just think your cute..
Captn, are you sweet on ms bursack? aw...

I became a caregiver to my husband a year and a half after we both retired to have some fun. Good thing we packed the first 18 months of retirement with lots of travel, volunteer work, our hobbies, and catching up with friends. Then three years ago, he had a major right brain stroke, acquired a septic infection in the hospital, and then got endocarditis (bacterial infection of the heart valves), which lead to more strokes.

After nine months in live-in rehab, he came home to our house. He's been home 2 and a half year. He can take care of himself physically, but he's not so good at things that require a complex procedure or things that don't work the way he thinks they should. He's not good at being redirected when doing things wrong because in his career, he was professional contrary: he did things differently than everybody else and it magically worked out much better than the obvious way. Now, his trust your gut instinct is broken, so when starts going off on a tangent, things will get broken.

Our marriage had an iron clad "no kids" policy. My husband is now in violation of the spirit of our agreement, because the stroke caused vascular dementia in addition to mild physical impairments.