Family caregiving is often referred to as a labor of love. It can be fulfilling to care for someone who has perhaps cared for you, and it is a responsibility some people feel duty-bound to perform. But even for those who recognize the sense of purpose that comes with the role, family caregiving can still be incredibly stressful, exacting a physical, emotional, and financial toll on the unpaid caregiver.
>> Related: Confronting Caregiver Guilt
The impacts on family caregivers
Caregiver burnout is incredibly common, and why wouldn’t it be? The need for near-constant vigilance can be exhausting. On top of that, the responsibilities that accompany the role are often unpredictable and out of the caregiver’s control. The tasks also can spill over into other areas of the caregiver’s life including their work responsibilities and relationships.
Centers for Disease Control (CDC), the Family Caregiver Alliance, and AARP research has repeatedly quantified the impacts caregiving can have on a family member.
- Stress, depression, and other emotional distress is exceedingly common. Somewhere between 40 and 70 percent of family caregivers acknowledge they are coping with depression and/or anxiety, and a majority of family caregivers experience one or more of these feelings at least twice a month.
- One in five family caregivers (20 percent) self-report that they have “fair or poor health.” Only 41 percent of family caregivers describe their own health as “excellent or very good.”
- Interestingly, caregivers’ stress hormone levels are 23 percent higher than non-caregivers’. This can lead to weight gain, more frequent illnesses, and slower wound healing.
- The mortality rate for spousal caregivers who are age 66 to 96 is 93 percent higher than for non-caregivers in that same age group.
- The financial impact of family caregiving can also be dire. Over a quarter (27 percent) of unpaid caregivers report a moderate to high degree of financial hardship as a result of caregiving.
>> Related: The State of Unpaid Family Caregiving in the U.S.
The unpredictable scope of the “job”
Typically, when you take a job, you have read the job description, been through the interview process, had a chance to ask your questions about what to expect in the role, and come to an agreement with the hiring manager about hours, wages, benefits, and more.
The job description for an unpaid family caregiver is much murkier with the specifics of the role constantly changing and shifting. Some of the unpredictable aspects that can accompany the job might include:
- Behavior issues from the care recipient
- The care recipient’s progressive physical or mental deterioration
- Evolving vigilance demands as the care recipient needs increasing amounts of care or supervision, up to and including around the clock
Other factors that come into play and can make the caregiving role more challenging are the relationship between the caregiver and recipient, and whether they live together. Depending on your situation, these family dynamics truly can be an X-factor when it comes to caregiving.
Unique challenges of dementia caregiving
I recently wrote about the special issues that surround dementia caregiving. For those who are caring for a loved one who has dementia, the impacts can be even more severe with higher levels of burnout, stress, and health issues. The caregiver must learn to cope with unique issues from their care recipient like:
- Wandering, confusion, disorientation, poor judgment/decision-making, and other safety concerns
- Mood changes, fearfulness, and unfounded suspicions of family/friends, which can lead to injury to the patient or the caregiver
- As the disease progresses, issues with walking, speaking, and swallowing
This progressive nature of dementia means increasing unpredictability but also the added emotions tied to seeing a loved one deteriorating. It truly is the “long goodbye.”
>> Related: Special Considerations Surround Unpaid Dementia Caregiving
Support for family caregivers
Some level of caregiver burnout is probably inevitable, especially for those who feel obligated to provide unpaid care. But there are ways to help stave off the speed and severity of that burnout — specifically, ensuring the caregiver has access to a support system. A few resources and tactics that caregivers might consider:
There are more and more technology-based tools that can help alleviate some caregiving responsibilities. Home sensor systems can detect movement, as well as the opening and closing of doors, refrigerators, and more. Personal emergency response systems (PERSs) are wearable Bluetooth sensors that track a person’s movement and can summon help in an emergency. Medication management devices and apps can help care recipients remember when to take medication and even dispense the correct amount.
Care for yourself
Family caregivers must learn to set appropriate boundaries and prioritize self-care. It can be difficult to say “no” to a loved one, but as we see from those statistics on caregivers’ declining health, it is essential to care for oneself so that you have the emotional and physical bandwidth to care for your loved one. It’s like they say on an airplane, you must put on your own oxygen mask first before trying to help others.
The tasks that can come with caregiving can be overwhelming to anyone; it doesn’t mean you don’t love your care recipient. And it’s okay to ask for help — what is sometimes referred to as “respite care.” There are agencies that can provide paid caregivers for anywhere from a few hours a week to 24-hour/7-days a week assistance to give a caregiver a much-needed break. If cost is an issue, ask another family member or friend if they could lend a hand to provide some time off from your caregiving responsibilities.
Care at the ready
For those who have opted to move to a continuing care retirement community (CCRC or life plan community) when they were still in good health, they have ready-access to whatever level of care is needed. In some cases, this care can be provided in the care recipient’s current residence — enabling couples to remain together for as long as possible.
If a higher level of care is needed, it can be given within the community’s assisted living or healthcare center. These on-site facilities also help couples to remain nearby, allowing partners to visit one another as frequently as they would like.
If you feel that you do not want to be a burden to your adult children or other family members, a CCRC could be a good option. Although seeing an aging loved one’s health declining is never easy, the peace of mind offered by a CCRC’s continuum of care can take some of the stress out of an already difficult situation. This can in turn help prevent the more rapid decline of the would-be caregiver’s health. Just be sure to do your due diligence about the quality, accessibility, and type of care available at the CCRC you are considering so you understand exactly what you are getting for your money.
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