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, miserable and difficult to care for. The caregiver merely wants their life back and an end to their care recipient’s suffering. Of course, those who admit to having this thought wonder if that makes them a terrible person.
Most of these people are decent folks who care deeply about their parents, spouses and other loved ones who require care. They have taken on caregiving, as so many of us do, 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 safely live alone, but nobody wants them to move to a long-term care facility—at least not at the moment. So, a family member steps up or is nominated to provide and manage this person’s care.
Everyone is on an adrenaline high while making these decisions, but eventually reality sets in. The 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, bills and so much more with little or no help.
After a while, the caregiver’s spouse 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. Everyone is somehow shortchanged, yet the rest of the family still says, “We can’t put Dad in a nursing home!” The caregiver agrees and keeps on keeping on. 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 this caregiving role will last. 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 come to an end until one’s care recipient passes away. It is this morbid yet realistic realization that leads caregivers to wish for a conclusion to their situation.
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 takes a heavy emotional toll and involves a great deal of physical effort to even attempt to make them calm, comfortable or content. The doctors have done everything they can, so 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 into a caregiver’s mind, the immediate reaction is often overwhelming 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, naturally, we focus on the finish line, 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 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—mentally and physically healthy and independent the way they used to be. Caregivers are human beings, not saints.
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 are depressed, overwhelmed and seemingly out of options. They just don’t know what else to do.
I have some suggestions for caregivers who are grappling with these thoughts:
- See a doctor for yourself. Get a thorough physical and ask your doctor if you may need treatment for depression. Unchecked caregiver stress often contributes to burnout, 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, at the very least, go to your annual preventative appointments. Caregiving takes a toll on your physical health and it’s important to listen to and take care of your body.
- Don’t consider time off a luxury. Respite care is a necessity. It is crucial for your mental and physical health. 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 seeing that your loved one is well cared for.
- Find a sanctuary where you can recharge. 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, go see a movie or attend a church service. Do things that bring you peace and happiness. Ideally, you will have a place in your home as well where you can enjoy some solitude.
- Find productive ways to release stress. Exercise is known to help both mental and physical health. Remember, although gyms and yoga classes may count as “away time,” 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 artistic endeavors can be useful outlets as well. Whether you’re journaling, cooking, drawing, painting, 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. When I was in the deepest part of caregiving with five elders and two children to care for, I would have considered attending support group meetings just one more thing 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 need to meet 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. These thoughts are in no way abnormal for caregivers, but they do indicate that you are experiencing caregiver burnout or possibly compassion fatigue. Find a way to get breaks, somehow, before you break. If this is impossible, 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 be undesirable, but this is a better option than running yourself into the ground with guilt and responsibilities or even risking lashing out at your loved one out of exasperation.