Just a Daughter Taking Care of Mom ...
With 44 million people providing care to someone over the age of 50 in their home, the problems faced by these millions of family caregivers are reaching crisis proportions in our nation. You may know someone who is taking care of a family member. It might be your elderly neighbor, who provides demanding non-stop care for his wife of 50 years who suffers from progressing dementia, but can't bear to remove her from the home she has lived in and loved for decades. It might be your cousin, whose mother suffers from a number of chronic illnesses that require professional home care services as well as seven-day-a-week assistance with the activities of daily living. Or it might be you, a typical sandwich generation middle-ager, caring for an aging parent while trying to juggle the demands of your own children and a full-time job.
Take, for example, Jeanine, a 59-year-old advertising saleswoman, caring for her 82-year-old mother, Helen. Helen has chronic obstructive pulmonary disease (COPD) and diabetes, two very common diagnoses faced by the elderly in the U.S. Helen received visits from a professional home care nurse as well as a home health aide after a surgery related to diabetic complications. But now that formal home care services have ended Helen still needs assistance each day. She's just not strong enough to be on her own, to fix herself meals, and remember her medications. Jeanine, who lives 30 minute away, visits every evening she can and makes sure that her mother has had something to eat, taken her medications, is safe by herself and has someone to talk to.
Jeanine was surprised when she heard her title of "caregiver." "I'm just a daughter taking care of my mom," she replies. But, when probed further, Jeanine admits to feeling weary. "I haven't been to the gym in two months and I've gained some weight. And my back is killing me."
Most people find it comforting to know that, as technology improves, more and more illnesses and conditions can be managed outside a hospital or nursing home setting, and that they can remain in their homes for a longer period of time. But with this new flexibility comes a host of additional difficulties for family caregivers, such as the need to change wound dressings, help with personal care, and manage insurance paperwork. Many family members, loved ones or neighbors feel hopelessly unprepared for the work they have to do.
Comments like Jeanine's are often heard from those caring for family members. Family caregivers have been found to be at higher risk for many health problems, such as stroke, depression, anxiety, substance abuse, chronic illnesses such as heart disease and diabetes, and higher mortality rates. They often report back pain, from having to move their family members, say from the bed to a chair. They miss work, skip vacations and suffer job-related worries. And they often spend so much time shuttling their family member to doctor appointments that they miss their own checkups -- some caregivers report not having been to visit a doctor for themselves for years.
These stories are repeated in thousands of households throughout the nation--and in some ways, these family caregivers are the lucky ones. Many caregivers do not live close enough to visit their family members frequently, so they end up juggling air travel, jobs, and their own families, while struggling constantly with feelings of guilt and inadequacy.
I'm writing this blog because I believe it is time to focus on the caregiver--helping them to provide assistance to their family members, loved ones or neighbors in need, while finding the time to maintain their own emotional and physical health. I hope to address many of the hard issues facing caregivers: getting the training they need to provide hands-on medical care, understanding and managing medications, staying on top of insurance paperwork, and communicating with health care professionals. Ideally, this blog will be a voice for you as well, to share your concerns, fears, solutions and inspiration.
Another aim of the blog is to make sure that medical professionals and paid providers understand and support the critical role that family caregivers play. I'd like to create a forum that will help the formal delivery system evolve, so that patients, family caregivers, health care professionals and providers are all communicating and working in partnership, not opposition.
When my son was born, he spent four months in the neonatal intensive care unit (NICU) and faced many challenges his first few years. In those first months, I was angry and frightened, a traveler without a map, "visiting" my tiny son every day in an excellent clinical setting, but one that could not possibly have met my standards for vigilance, searching for someone who spoke in words I could comprehend. I have aging parents now--they are both in their 90s and my dad is planning his 98th birthday party in April! I hope that my brother the scientist, my sister the humanist, and I can provide them all the care they need, though they live in a different part of the country. I will face challenges as my siblings and I try to ensure their comfort, safety and health, and I am hoping that this blog will enable me, as well as all of you who are facing the same thing, to give all that is needed, while preserving my sanity and sense of humor.
I work as the Vice President of Community Benefit and External Affairs at the Visiting Nurse Service of New York, the oldest not-for-profit home care agency in the nation. I have spent much of my professional life engaged in issues facing the direct care workforce in long term care. Professional home care providers and family caregivers face many of the same difficulties, but as I've learned, family caregivers have until now not been given the kind of support they need to do their jobs. We hope this blog can help change that. The voices of caregivers are valuable, and I invite you to post your comments so that we can be sure to address the issues important to you, the family caregivers of today.
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