By Scott Greenberg, CAEd
Providing optimal care for a loved one changes over time, and includes appropriate support for the family caregiver.
Here’s a familiar scenario. A loved one has knee surgery and has enlisted a spouse or partner to become the primary caregiver for a week or two. It’s inconvenient for sure but the family member is up to the task and ready to help. Maybe that person has to take some vacation time from work and skip yoga or golf, but this is part of the territory and what he or she signed up for. A week or two goes by, therapy starts, and slowly life begins to return to normal. Crisis averted.
Now imagine that instead of a temporary inconvenience, a loved one is diagnosed with a chronic, progressive disease that will require caregiving at various levels for as long as fifteen years or more. Or perhaps an accident, a fall, or the death of a spouse puts a loved one in a precarious situation. Either insufficient finances or the unwillingness to consider an independent or assisted living community make that option impossible. Welcome to the world of family caregiving! The order of the day is to understand the need for appropriate, person-centered care.
Traditionally, children and family members stepped in to care for aging loved ones. However, the ability of family members to do that is rapidly changing. Dual-income earners and raising children involved in myriad school and extracurricular activities are just two examples of the challenges faced by family caregivers today. In addition, adults aged sixty and up with one or more adult children live, on average, more than 280 miles from their nearest child according to a report entitled “The Value of Home Care” (Home Care Association of America, 2016). Even the most well-intentioned child who wants to care for Mom or Dad often can’t, due to geography getting in the way. This means a new vision of caregiving must be explored.
Caregiving Needs In Flux
What does this new vision look like? First, one must understand that caregiving needs evolve over time, and the distribution of that need and who will provide that care will change. It’s critical to remember that a loved one’s safety, security, and other needs are the priority. Patient-centered caregiving does just that; it places the patient in the center of the wheel. The spokes may include some or all of the following:
- Physical therapists
- Estate planning attorneys
- Perhaps mental health professionals
Caregiving is typically broken down into four primary categories. As previously mentioned, safety and security are first, followed by activities of daily living (ADLs). Care needs may change and reliance on help with instrumental activities of daily living (iADLs) will increase over time. Lastly, the caregiver must innovate to provide meaningful activities and social interaction. There is no question that it is hard to realize that the right caregiver may not always be a family member.
Bringing a stranger into the home to help care for a loved one can add an entirely new level of stress if not handled well. There are some things one can do to help make for a successful transition as the caregiving network begins to expand to include hiring a professional caregiver. First and foremost, ask the provider being considered what training and experience, if any, the caregiver has that is specific to the disease the care receiver is living with. In addition, both the client and family member need to be comfortable with the fact that some things will be done differently with the addition of new members to the team.
Encourage the new caregiver to ask questions. The caregiving professional is there to help and wants to do a good job, but she cannot read your mind. To help alleviate some of the stress, create a list of preferences that includes the daily routine to help ensure a smooth transition. Lastly, don’t be afraid to make a change if the caregiver isn’t the right match. Like in dating, you usually don’t marry the first person you meet. Sometimes it takes a few tries to find the perfect fit.
As professionals, it’s important to remember and remind the family gently that if the client’s needs are being met and the person is safe and secure, it doesn’t matter if the dishwasher is loaded differently or the towels are folded in thirds instead of in half. Professional caregivers have to walk a delicate line when they enter a household. The job often requires giving assurances to the family caregiver, who has nearly always stepped in without training and having few resources, about the care that person is providing while making adjustments to improve on that care.
Tools for New Caregivers
Two tools can be extremely helpful when preparing for and instituting person-centered caregiving by a new professional for a loved one. If the family caregiver hasn’t already prepared these tools, the professional can generate them. The first is called “A Day in the Life.” This is a simple questionnaire for the family caregiver that covers what a typical day might look like for the care receiver. Questions about wake-up routine, food preferences, shower or bath and at what time of day, dietary restrictions, and bedtime routine, among others, are included to help the caregiver maintain consistency in routine and minimize anxiety in the client.
The second tool that is incredibly helpful is something called “Social History.” This questionnaire is for the family caregiver and the loved one both, and takes a deeper dive into who the care receiver is based on past experiences. It looks at professional affiliation and work history, religious preferences, military service, hobbies, fears, family, areas of particular pride, favorite music, movies, books, and more. This is not just a “Where did you live and how long were you married?” type of inquiry. Instead, it delves into deeper questions regarding how the person feels about past life events, values, hopes, and dreams.
When to Hire Another Caregiver
What often brings about the need to reconsider the family caregiver’s responsibility and who is going to provide this service is when that person has been in the role for some time and is starting to experience burnout. How does someone know when caregiver burnout is becoming a problem?
Remember that at the onset of diagnosis, the person with the illness is likely still independent with personal care, able to prepare meals, and in some cases may still be driving. The responsibility of the caregiver is still generally manageable. As a loved one’s disease progresses, his or her level of independence decreases while the caregiving needs increase. A family caregiver may have to stop working to attend to the needs of a loved one. In fact, 29 percent of family caregivers are tending to two or even three people at the same time (VITAS Healthcare, n.d.). Nearly a third of caregivers (32 percent) describe the experience as stressful (VITAS Healthcare, n.d.) and may be headed for burnout. Being able to recognize the signs of caregiver burnout is critical for the health and well-being of both people involved.
The statistics are scary. According to research, 64 percent of family caregivers caring for someone with Alzheimer’s disease will predecease their loved one with the disease if they don’t receive some help (Alzheimer’s Association, 2019). The truth is, one cannot serve from an empty vessel. Family caregivers need to take care of themselves first and seek help before the stress of their added responsibilities affects their health and well-being. To do otherwise endangers their ability to provide optimal care. Let’s look at some of the signs that indicate someone is experiencing stress or headed toward burnout:
• Excessive drinking
• Loss of sleep
• Missing appointments
• Non-existent social life
• Anger/resentment toward a partner
What To Do
Remember that as the needs of the family member change and evolve, so must all those involved. The client or loved one isn’t dying of their condition. They’re living with it. In chronic disease progression or in aging in general, the person receiving help can be as exasperated as those providing it. Burnout of the caretaker is understandable, but remaining focused on delivering care that centers on the person in need must always remain top of mind. If a family caregiver is feeling stressed or burned out, action needs to be taken immediately for everyone’s sake.
There are options, many options, that help keep the caregiver stay well and still deliver person-centered care to the one in need. Adult day centers are wonderful. They provide cognitive stimulation and engagement for those living with Alzheimer’s, dementia or Parkinson’s. Basic senior centers are another great option if the need is not condition-specific. Taking advantage of programs at a day care or senior center can allow caregivers to have up to eight hours of respite a day. Perhaps they can continue working, with the peace of mind that their loved one is safe and happy.
Another option to consider is moving some or all of the burden from family caregiving to professional caregiving. Home Health Agencies are able to provide care in the home for as little as four hours a day, a few days a week, all the way up to around-the-clock every day of the week. People with Home Health Aide (HHA), Certified Nursing Assistant (CNA), Patient Care Assistant (PCA), and other like certifications can assist with personal care, meal preparation, light housekeeping, medication reminders, errands, socialization, and cognitive stimulation to help ease the burden on the family caregiver. Companies such as Home Health Agencies can provide competent staff for those tasks.
The old adage “It takes a village” is never truer than when talking about patient-centered caregiving. What’s important to remember is that by placing the patient or client at the center of the wheel, the team can collectively determine how to best care for that person. It’s also critical for family caregivers to remember that they are not alone. Support groups can really help and everyone should participate in one if possible. Never lose sight that it is the quality of care, not the severity of one’s condition, that determines one’s quality of life. When caregivers focus on the person at the center of the wheel they help give that person a reason for living. In essence, that truly defines person-centered care.
Scott Greenberg is currently CEO of ComForcare Senior Services, a private-duty, non-medical home healthcare agency serving Palm Beach, Martin, St. Lucie and Indian River counties in Florida. Scott serves on the board of the National Guardianship Association and is past president and a current board member of the Florida State Guardianship Association. He is also on the Advisory Council for the Area Agency on Aging. He has served on Alzheimer’s Community Care’s special goodwill task force, and is a former AmeriCorps volunteer. Scott is a highly sought-after speaker on senior issues important to boomers and their parents, wrote an award-winning book entitled, “Oh My God, I’m Getting Older and So is My Mom,” and hosts a weekly radio show on 95.9FM True Oldies with the same title. Scott received his National Certified Alzheimer’s Educator designation from the National Certification Board for Alzheimer & Aging Care in July 2014.
Alzheimer’s Association. (2019, March). Alzheimer’s disease caregivers. Retrieved from http://act.alz.org/site/DocServer/caregivers_fact_sheet.pdf?docID=3022
Home Care Association of America. (2016). Caring for America’s seniors: The value of home care. Retrieved from http://www.hcaoa.org/assets/1/27/Value_of_Home_Care___SECURED.pdf
VITAS Healthcare. (n.d.). Signs of caregiver burnout and how to prevent it. Retrieved from https://www.vitas.com/family-and-caregiver-support/caregiving/caregiver-life-balance/signs-of-caregiver-burnout-and-how-to-prevent-it/