Caregiver burnout is a growing trend that shows no sign of slowing. Spouses, or children, who are leaving their jobs and, at times, society, to take on the noble task of caring for their loved ones full-time experience physical, mental and spiritual fatigue. What are some of the signs of fatigue? And, what are your options to combat or mitigate burnout?
“The role of the dementia caregiver can be incredibly isolating,” says Lucille Carriere, PhD, a clinical health psychologist at the Lou Ruvo Center who studies the health and well-being of dementia caregivers. “They are incredibly devoted and so focused on their loved one that they often forget about their own physical, emotional or spiritual needs.”
Burnout can manifest itself slowly. Mostly because we don’t always recognize the symptoms in ourselves due to being hyper-focused on the health and well-being of someone else instead of our own. What might seem manageable at first can quickly become overwhelming, especially for dementia caregivers.
There are over 6 million Americans living with Alzheimer’s or some other form of dementia and over 11 million Americans provide unpaid care for them at home, according to the Alzheimer’s Association. So what exactly is involved in caring for a person with dementia? Here is a brief list of the basics:
- Assistance with ADLs (activities of daily living) which includes brushing teeth, bathing, dressing, grooming, feeding, and toileting.
- Helping the individual walk from one place to another and often assisting with transferring them in and out of a bed or a seat depending on their level of acuity.
- Managing all aspects of their medications, from calling in and picking up refills to administering medications throughout the day.
- Arranging doctor’s appointments and the transportation to and from appointments, as well as being their advocate during the appointment and taking notes.
- Meal preparation and feeding assistance as needed, including snacks throughout the day to help meet nutritional needs.
- Handling dementia related behaviors that may occur during the day, including agitation, lethargy, confusion, depression, wandering, and nighttime disruptions of their sleep patterns.
And that’s just the tip of the iceberg. Dementia caregivers have a 24-hour, 365-day-a-year job. And many of them do it alone without proper training or experience in caring for a person with cognitive impairment.
It’s no wonder that dementia caregivers experience a high level of burnout, including but not limited to their own physical decline as well as a profound impact on emotional health.
This is where full-time memory care can help offset the heavy toll of this disease on the family and allow them to better utilize their time together without the daily burden of caregiving. But what if you’re not sure if your loved one (or you) are ready for full-time care? Respite Care might be the answer to this question.
What is Respite Care?
Respite care is a short-term care service offered by many assisted living and memory care communities. This temporary solution is an alternative to full-time residency for family caregivers who need a break from the round-the-clock job of caring for a loved one.
Think of it as an all-expenses-paid resort that specializes in care. People receiving respite care get to enjoy all the benefits of a full-time resident: apartment, meals, activities, movies, friends, and even medication management.
Why should you consider Respite Care?
In this “try before you buy” economy, respite care offers families a chance to “test drive” residential memory care without the commitment to full-time care. You get to see how a community operates, how well your loved one enjoys it, and if they would be a good fit for the program. If you are hesitant or curious about how your loved one will do under someone else’s care, this is a wonderful way to try it out.
Many families first utilize respite care when they are planning vacations for peace of mind, as traveling with a person living with dementia can be very stressful and may not be feasible depending on their disease progression.
Others may simply need a break – and that’s ok! It is critical for caregivers to take a break. Your health and the health of your loved one depend on it. In fact, many respite stays are initiated because a primary caregiver is experiencing a physical or mental setback and may be incapable of caring for their loved one while they recover.
Respite care is a win-win for the caregiver and the person living with dementia. They receive compassionate, round-the-clock care, and you in turn receive a well-earned opportunity to renew yourself as a care partner. This break will allow you to be a better caregiver in the long run and will give your loved one the care they deserve.
Remember: utilizing caregiver resources such as respite care does NOT represent a failure on your part. On the contrary! You have been doing the jobs of three full shifts of a dozen or more trained staff members all by yourself – and that is no small feat!
What are the benefits of Respite Care?
Specific amenities will differ by provider, but individuals enrolled in a respite care program typically enjoy most of the benefits that the full-time residents receive. This includes meals and snacks, a furnished room, daily activities designed exclusively for those living with cognitive impairment, compassionate care from a dementia-trained staff, licensed nursing care with medication management and secure living accommodations which is especially important if they are prone to wandering.
Socialization with Peers
Perhaps the most important benefit of respite care is the socialization that a person will enjoy if they have been living at home where they may have limited interaction with others. COVID-19 has seen a huge increase in the impact of dementia both on the person with the disease and the carer, due in no small part to the extreme isolation of the past few years. “There are many times when I have been overwhelmed. It’s why I try to spend so much time texting or calling other caregivers. They are walking the same paths I’m walking and are the only people who really understand,” says Linda Loane, caregiver for her husband, Jim.
The benefits of socialization cannot be understated. Interacting with peers, building friendships, and enjoying the daily activity of a community can often lead to decreased behaviors and agitation, and you may find their overall mood improves as a result of respite care. Not only that, but the caregiver can take a well-deserved break to rest, recharge, and spend time with others.
Relief from Caregiver Burnout
The demands of caring for a person with dementia are enough to push the strongest of us to our breaking point. But too much stress can be harmful to both of you. Bit by bit, you notice your own well-being taking a backseat to your loved one’s increasing needs, and that is a recipe for disaster. When your own mental and physical health declines, your ability to be an effective caregiver begins to fade. It is critical to accept help and take breaks whenever possible, especially respite care which will give you an extended break to focus on your own needs.
Test-Drive Community Life
Family caregivers may also be surprised to learn that a respite stay can make the transition to full-time care much easier for everyone. You have gotten to know the staff and they’ve had a chance to get to know your loved one and how their services may complement the wonderful care you’ve been providing for months or years.