Occasionally, someone on the AgingCare.com forum will say that they secretly wish the parent for whom they are caring would die. The parent is sick, miserable and hard to care for. The caregiver wants her or his life back. Of course, those who admit they have had this thought wonder if that makes them a terrible person.
Most of these people are decent folks who love their parents. What has happened is they have taken on the role of caregiver, as so most of us do, out of love. Our elders need us, so we hop in without a thought. We have no idea that this role could last for years, or even decades.
Let's say a widowed father has a stroke. The family goes into crisis mode. The doctors bring him through, and then what? He's disabled and can't go home alone. The family doesn't want Dad to go to a nursing home, so the daughter who lives in town makes some adjustments to her home and takes dad in with her. Everyone is on an adrenaline high.
Then reality sets in. The daughter who is caring for her dad is left alone as siblings go back to their lives. She manages her teenagers, her part-time job and her dad's many doctor appointments, therapy appointments and daily care, while getting help through only a couple of hours a week of in-home care.
Her teenagers begin to resent their grandfather as a sick intruder. They resent their mother who seems too busy for them. Her work slips and her employer criticizes often. Her husband is annoyed more often than not.
Still, the family says, "We can't put Dad in a nursing home." The caregiver agrees and keeps on keeping on. Her life as she knew it has disappeared.
She starts to have fantasies that her dad will soon die. While at one time she would have been devastated by his death, she feels now that so much of him is gone he isn't really Dad anymore. She knows he has pain and is depressed. The doctors have done what they can. The caregiver starts thinking how nice it would be if Dad just went to sleep one night and didn't wake up. She believes that, then, she'd get her life back.
Guilt nearly overwhelms her when she has these thoughts. But is she so abnormal or terrible? She has, in many ways, lost much of her dad. Added to that, she's taken on a huge role as a caregiver. Caregiving has changed her life. In reality she has taken on another full time job.
Not everyone is suited to taking a parent in their home, even if they only have themselves to consider. Even fewer people are suited to long-term caregiving of a disabled, elderly adult at the same time they are raising a family and employed elsewhere.
Most people wishing that their elder could just die aren't horrible people. They aren't thinking of "hurrying up the process." They are still doing their very best to be a good caregiver. Their 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 even like their elder back – healthy and independent. They are human beings, not saints.
I believe that most people who express the thought that their elder would die are just anonymously voicing the thoughts of many other caregivers. These are good people who have seen their lives turn into more than they feel they can handle. I believe that many of these people are depressed, overwhelmed and just don't know what to do.
Some suggestions:
- See a doctor for yourself. Get a thorough physical and ask your doctor if you need treatment for caregiver depression. Tell your doctor about your daily routine. He or she may suggest medication for depression and/or stress. Counseling may be suggested. The main thing is, take care of yourself.
- Don't consider time alone a luxury. This is about your mental and physical health. Hire in-home care to take care of your dad. Get agency help while you go to your kid's school functions. But also get agency help for when you need time away from the family and time alone.
- Away time may include a yoga class or a gym. Exercise is known to help mental health as well as physical health. Remember, although gyms and yoga classes may be "away time" they aren't alone time.
- Find a sanctuary for alone time. If you like being outside, find a park where you can sit on a bench and meditate or daydream. If you prefer inside, find a spiritual home with a quiet room, a museum, a library or any other place where you can be mentally alone, even if others come and go. Ideally, you would also have a place in your home where you can have some time alone.
- Nurture your own body, mind and spirit. This could include a support group where you air your dirty laundry in a safe place, a spiritual home for meditation, and a walk in the park.
Yes, I hear you laughing and can visualize your eyes rolling. When I was in the deepest part of caregiving with five elders and two children, time spent going to a support group would have been just one more thing to do.
Fortunately now we have great Internet support. Groups like the AgingCare.com forum are invaluable. However, some people need to meet other caregivers face to face. If you are one of them, then call your local Alzheimer's group or social services and ask about support groups. If there is an Area Agency on Aging that covers your area, call them. Not every community is covered by this government supported program, but they do have a lot to offer.
Go on your state's website and look under aging services. There you will find your state's version of the Family Caregiver Support Program. You will get education and support through this government supported program.
The bottom line is get help for yourself. Get breaks, somehow, before you break. If this is impossible, it's time to bite the bullet and move Dad to assisted living or a nursing home. Better this than your having a total breakdown loaded with guilt over your wish that a parent would die.
Elder care author, columnist and speaker Carol Bradley Bursack is an AgingCare.com contributing editor and moderator of the AgingCare.com community forum. Read her full biography