Mary Theresa “Terry” Vasquez, RN, has seen Alzheimer’s disease (AD) from a variety of angles. As a registered nurse, she has provided care both in and out of the home for other people’s family members who suffer from AD. When her own mother was diagnosed, her connection to the disease became much more personal.
When her mother’s condition progressed to the point where she could no longer live alone, Terry moved from Virginia to Texas to serve as her in-home caregiver. After six months, Terry returned to her own home and arranged for professional inhome care at her mother’s, combined with local daycare services, both of which she managed remotely. Eventually, her mother was moved to a small assisted living group home in Texas, where she currently resides.
Terry now volunteers as the Virginia State Representative for the National Family Caregivers Association (NFCA), and leads the group’s campaign to develop a U.S. postage stamp recognizing family caregivers. She has even written a book (Mi Mamacita Tiene Alzheimer’s: My Beloved Mother Has Alzheimer’s), which offers tips and reassurances to others in similar situations.
“Deciding whether or not to care for a family member in the home is such a personal decision,” she says. “You have to look at the total picture of your life—your family, your work, your faith, and the financial and physical impact it will have. For me, being a nurse, it came to me automatically, but I was really scared. During those six months, the Alzheimer’s Association guided me to daycare and eventually to respite care. It was hard for me to let go when I moved out, but I am confident that I can continue to take care of my mother’s needs as a long-distance family caregiver.” Not every caregiver will be able to give care remotely, like Mary. Even when a patient is living in a nursing home, a family member or caregiver outside the nursing home who can make regular visits is often required to fully asses the patient’s needs and to see that they are being met. This is especially true when the patient is living at home.
A Growing Population
While Terry lived with and cared for her mother, she became one more among the staggering number of inhome care providers in the U.S. Along with the 5.5 million people currently living with AD, there are an estimated 10 million unpaid caregivers supporting them.
When Terry sought additional help, her mother became one of the 7.6 million individuals who receive in-home care from a professional care provider because of acute illness, long-term health conditions or a permanent disability such as AD, according to the Mayo Clinic. If you are facing a similar decision, whether as an Alzheimer’s patient or a relative, remember that you do have options when it comes to retaining independence. The responsibility for in-home care does not have to fall solely on any one person’s shoulders. Just as Terry did, you can design a care profile that best suits your individual needs, and adjust it as those needs change.
Determining how best to provide in-home care for someone facing Alzheimer’s—and determining whether inhome care is preferable to a move to a residential facility—depends on multiple factors.
“The decision varies with individual situations and with the capability of the family members,” says Mary St. Pierre, MGA, BSN, RN, who serves as vice president for regulatory affairs at the National Association for Home Care and Hospice (NAHC). “One person might find she can cope independently while caring for someone with Alzheimer’s just by using resource materials she can get from different organizations. With help of that kind, she can continue care without bringing in more help. Others might find they need help early on,” she explains. Like Terry Vasquez, Mary St. Pierre has multiple perspectives when it comes to Alzheimer’s care. In addition to her experience as an RN and her leadership role with the NAHC, she has assisted with the care of her mother-in-law and her father, both of whom have been diagnosed with AD.
When her mother-in-law came to live with them, Mary and her husband cared for her during non-working hours. When they left in the mornings, Mary’s mother-in-law went to a day program designed for persons with memory impairment. The balance worked in large part because of Mary’s professional background and her level of comfort both providing and coordinating care.
When Mary’s father required assistance, his wife (Mary’s mother) provided in-home care for him around the clock. “My experiences with my dad were more intermittent because my parents lived several states away,” she recalls. “One day while I was visiting, I told my mom to take a break. I thought I could get dinner on the table while keeping an eye on Dad so Mom could go to church. I assumed he was watching TV, but he was busy doing something else. He had slipped out the back door, picked up the lawnmower and hauled it up three steps into the house!”
Mary offers these examples as a way of illustrating the unique challenges faced by every family dealing with AD. Household dynamics, behavioral patterns, disease progression, experience and financial constraints all contribute to the decision of how best to structure in-home care.
Taking on the Job
If you decide that you are the best person to provide care for your loved one, there are numerous resources available to you. (See sidebar on page 11 for Web site addresses.) In addition to learning the home care basics, you can become familiar with the ways in which your role will likely change over time. Read as much as you can in advance so that when new demands arise, you will be better prepared.
As you already know, the job of caregiver can be extremely taxing. In order to provide the highest level of care to your loved one, remember to do the same for yourself. Guard against stress and burnout by building breaks into your duties, even if it’s just a matter of closing your eyes and counting silently to ten. If someone you trust offers to take the reins for a few hours, take advantage of the opportunity. Take a walk; go to a movie; do whatever it takes to recharge your caregiving batteries. Keeping yourself physically and emotionally healthy is the best gift you can give your loved one.
When to Ask for Help
At some point along the way, every AD caregiver needs help. There is no shame in asking for it. In fact, when you reach the stage when you can’t do it alone, you are providing better care for your loved one when you can embrace that reality. Be proud of what you’ve done, and of the courage you’ve shown in seeking support.
The experts agree: Caregivers must ask for help before they are in crisis. That way, there is less interruption in the rhythm of life for everyone concerned.
The Professional Options
All Alzheimer’s patients need some level of supervision; and in general, a caregiver must be with the patient (e.g., in the house) at all times. Some family caregivers simply seek an hour of coverage each day; others find themselves facing new challenges that require the daily attention of a medical professional.
If you seek the help of a professional in-home care provider, look for an individual or an agency offering the appropriate level of care for your current needs. Also, urges Mary St. Pierre, be sure that anyone you bring into the home has had training working with people with dementia.
Certain situations call for a combination of some or all of the following:
• Companionship: If your loved one needs or enjoys the company of another person, you can hire someone to provide companion services. This person can help supervise while also engaging the patient in conversation, taking a walk around the block or working a puzzle. A companion can sit with the patient while the in-home family caregiver is elsewhere in the home, or is away for brief periods during the day.
• Domestic assistance: This is someone who is available to assist with light household duties such as cleaning, laundry, grocery shopping and cooking. You can even ask for this person to run errands on your behalf.
• Personal care: Sometimes called a home health aide, this individual is available to assist with basic daily tasks such as bathing, dressing, exercising, getting in and out of bed, and using the restroom.
• Home health (skilled care): When the AD patient requires clinical assistance, licensed home health workers can deliver just that. These professionals are qualified to come to the home and offer skilled medical services. Home health teams may involve any combination of physicians, registered nurses, licensed practical nurses, social workers, physical therapists, speech therapists, occupational therapists and dieticians.
• Hospice. Hospice workers come to the home to maximize the comfort and dignity of an individual when life expectancy is measured in weeks or months. Hospice care focuses on pain management and emotional support rather than treatment.
Paying for Care
Professional in-home care can be expensive, which is one of the reasons why so many family members provide care to their loved ones. According to the U.S. Department of Health and Human Services, the average hourly cost of home health workers in 2008 was $29. The rate can be higher or lower, depending on the level of care and the state where it is provided. However, some services are covered by insurance, and some are available for free or at reduced rates through public agencies. Here is a rundown of the most common sources of supplemental funding for in-home care:
• Medicare: If a physician orders medical home health services (such as skilled nursing or physical, speech or occupational therapy), they may be covered by Medicare. Visit www.medicare.gov.
• Medicaid: Availability is based on financial need. Visit www.cms.hhs.gov.
• Older Americans Act: Frail and disabled seniors aged 60 and up may qualify for this federal program, which funnels funds to state and local agencies. Visit www.aoa.gov.
• Veterans Affairs: Veterans who are disabled due to a service-related injury or illness may be eligible for services provided through VA hospital-based home care services. Visit www.va.gov/health.
• Community organizations: Many communities offer home care support to seniors through local programs. Ask your doctor or hospital social worker for assistance.
• Insurance: If you already have private insurance, check to see if it covers home care services and longterm care. Call the customer service number associated with your policy to learn more.
Ask Your Doctor
Talk with your doctor or another member of your healthcare team to get recommendations on the proper level of home care to meet your unique needs and to suit your budget. Physicians, nurses, hospital social workers and discharge planners should be familiar with the professional care options in your area and can help you decide which— if any—services you’ll need to supplement your own in home efforts.