Watching an aging loved one decline is never easy, especially when they have a low quality of life. Caregivers experiencing burn out may wish for an end, not out of cruelty, but because they realize there is little they can do to help.
Every so often, someone on the AgingCare Caregiver Forum will admit that they secretly wish the person they’re caring for would pass away. Often, this person is sick, suffering and difficult to care for. The caregiver merely wants to have their life back and see their care recipient’s pain and low quality of life come to an end. Of course, those who admit to having this dark thought wonder if that makes them a terrible person. Being a family caregiver is fraught with countless difficult emotions, and this is perhaps one of the hardest to grapple with.
New Caregivers Are Driven By Love and Hope
Most of these caregivers are decent folks who care deeply about their elderly parents, spouses and other loved ones who require their assistance. As so many of us do, they have taken on the responsibility of caregiving out of love. Our help is needed, so we jump in without a thought. We have no idea that this role could last for years or even decades. It doesn’t occur to us that this decision could jeopardize our relationships, our careers, our health or our finances, but that is the reality for most.
Many families are suddenly thrust into caregiving when a loved one experiences a medical setback or receives a serious diagnosis. Everyone goes into crisis mode. This person can no longer live alone safely, but nobody wants them to move to a long-term care facility—at least not yet. So, a family member steps up or is nominated to be the primary caregiver.
Everyone is on an adrenaline high while making these decisions, but eventually reality sets in. The primary caregiver, usually an adult child, is left alone as other family members go back to their lives. They are left to manage kids, possibly a marriage, a career, hands-on care, doctor’s appointments, medical bills and so much more with little or no help.
The Impact of Long-Term Caregiving
According to the Caregiving in the U.S. 2015 study conducted by AARP and the National Alliance for Caregiving, the average duration of caregiving is four years. However, nearly one in four caregivers (24 percent) provide care for five years or more. As this role drags on, the caregiver’s personal life begins to spiral. Their significant other and kids begin to resent their focus on this ill family member. Their performance at work suffers, and their employer is often critical and disappointed. Self-care falls by the wayside as the caregiver tries to prioritize others’ needs. Everyone is somehow shortchanged, yet the rest of the family still refuses to consider long-term care. The caregiver agrees and continues forging onward. The reality of caregiving sets in: life as they knew it has changed forever.
As the caregiver’s relationships with friends and family continue to deteriorate, they likely yearn for the past, grow to resent the present and look toward the future with skepticism. There is no way of knowing exactly how long caregiving will last. Sadly, any improvement in a senior’s condition is often short-lived. There are certainly ways to lighten one’s responsibilities, such as in-home care, adult day care and placement in a senior living community, but the role of caregiver does not fully end until one’s care recipient passes away. It is this morbid realization that leads caregivers to wish for a conclusion to their situation.
Waiting for an Elderly Parent to Die
Most caregivers would have been devastated by the death of their loved ones before they took on this role. But when a care recipient has declined so significantly that they no longer resemble the person they used to be, it can be heartbreaking to imagine prolonging such a life. When a loved one is in pain, depressed, demanding, abusive, demented or violent, it is emotionally distressing for everyone involved. Physical efforts to calm them and make them comfortable or content seem to become increasingly futile and exhausting as well.
All too often, the health care system prioritizes longevity over quality of life, especially when it comes to elder care. For many seniors, a longer life comes with age-related health conditions, disability, cognitive decline, a loss of independence and financial strain. There is no denying that elderly parents living too long takes a heavy toll on the adult children who care for them. When doctors have done everything they can and an elderly loved one no longer has a high quality of life, the caregiver starts thinking how nice it would be if their care recipient just went to sleep one night and didn’t wake up. The senior would finally be at peace, and the caregiver would get their life back.
When these thoughts creep in, the immediate reaction is often overwhelming caregiver guilt and shame. But is this thought really as abnormal or terrible as it seems? When we are faced with a grueling challenge, like running a marathon or working to meet a deadline, we naturally focus on the finish line or the end result. Caregiving is no different. This job is a serious undertaking, and when things get difficult, we begin to think about the time when our duties will come to an end. Unfortunately, this conclusion comes with the loss of a loved one.
Most caregivers who wish that their loved ones would die aren’t horrible people. They aren’t thinking of “hurrying up the process.” They will likely grieve this person deeply once they do pass, and they are still doing everything they can to provide the dignified, quality care this person needs and deserves. This wish is more of a fantasy. They’d just like to have their life back the way it was before all this happened. They’d like their loved one back, too—mentally and physically healthy and independent the way they used to be.
While few caregivers voice this sentiment for fear of how others will receive it, I believe that most caregivers do have this fleeting thought at some point during their journey. These are good people who have seen their lives turn into more than they feel they can handle. I believe that many of these caregivers feel depressed, overwhelmed and out of options. They are burned out and just don’t know what else to do.
How to Address Caregiver Burn Out
It’s important to remember that caregivers are human beings, not saints. I suggest the following steps for caregivers who are grappling with difficult care decisions, complex emotions and high stress levels.
Make a Doctor’s Appointment
Get a thorough physical and ask your doctor if you may need treatment for depression. Unchecked caregiver stress often contributes to burn out, depression, anxiety and other mental health issues. Tell your doctor about your daily routine, your moods and your mindset lately. He or she may suggest medication and/or counseling for depression and stress. If you don’t address these issues directly, at the very least, go to your annual preventative medical appointments. Caregiving takes a toll on both your emotional and physical health, and it’s important to listen to and take care of your body.
Take Time Off from Caregiving
Respite care is a necessity not a luxury. Do whatever you can to find any type of break as frequently as possible. You need time to disconnect from providing care and recuperate. Hire in-home care, take your loved one to adult day care, or ask a family member, friend, or neighbor to watch them for even 30 minutes while you decompress. Find ways to make time for yourself while also ensuring that your loved one is well cared for.
Get Away from the Care Environment
Putting physical distance between yourself and the place(s) where you provide care can help you mentally distance yourself from your responsibilities. If you like being outside, find a park where you can walk, sit on a bench, read or meditate. If you prefer the indoors, visit the local library, tour a museum, see a movie or attend a church service. Go to places that bring you peace and happiness. Ideally, you will have a place in your home as well where you can enjoy some solitude.
Reduce Caregiver Stress Levels
Exercise is known to help both mental and physical health. Although gyms and yoga classes may count as time away from caregiving, they aren’t necessarily alone time. If you need to blow off some steam by yourself, try going for a long walk, bike ride or swim. Remember that creative endeavors can be useful outlets as well. Whether you’re journaling, cooking, drawing, painting, gardening, or playing or listening to music, pursuing hobbies you love can have powerful restorative effects.
Join a Support Group
Support groups of all kinds can be found both in person and online. These group settings are excellent sources of friendship, validation, advice and empowerment. They’re especially helpful to caregivers who feel isolated and “stuck” on their journey.
Yes, I hear you laughing at these suggestions and can visualize you rolling your eyes. Back when I was a sandwich generation caregiver with five elders and two children to care for, I would have considered attending support group meetings just one more task on my endless to-do list.
Fortunately, fantastic support is now available on the internet. Support groups and online forums like those on AgingCare are invaluable to time-crunched caregivers who are seeking guidance but unable to leave the house. However, some people prefer meeting other caregivers face to face. If you are one of them, call your local Area Agency on Aging or social services office and ask about support groups. While you’re at it, ask about respite programs, financial assistance and other resources to help you put the above plans in place.
The bottom line is to get help for yourself. Wishing an ill loved one would die is not an abnormal thought for family caregivers, but it may indicate caregiver burnout or possibly compassion fatigue. Find a way to get breaks before you are the one who breaks. If this is impossible, then it’s time to bite the bullet and move your loved one to assisted living, a memory care unit or a nursing home. It may not be the care setting you envisioned, but it's a better, safer option than running yourself into the ground by providing continued care.
Bruce Webb is a Senior Real Estate Specialist (SRES) and has an extensive network of senior related referrals.