There are many caregivers in our world, more than at any time before. Caring for a loved one who is ill places very difficult demands on family members. However, it is not just in the act of caregiving that we face challenges, but in the feelings that go along with it. One of the strongest feelings is the caregiver’s guilt.
No matter what you do, you believe in your heart that it is not nearly enough. You have a job, a family, a health issue of your own, a home far away—the everyday obligations and obstacles. In your rational self, you know you are doing what you can, but your heart is stronger. It nags at you during the day and keeps you awake at night.
Add in dementia.
You keep visualizing your loved one sitting all day long in a lobby except for the three trips to the dining room and any trips to the bathroom. She doesn’t read or watch tv. In spite of your efforts to encourage her, she is not interested in any of the offered daily activities. She doesn’t remember any recent visits, so she is feeling lonely, neglected, forgotten. You know it. How soon can you get there, and how many days can you stay? And once you leave, for how long will she remember you were there?
The answer is to be there every hour of every day, but you can’t be. So it’s guilt—ongoing tear-at-your-gut guilt. It is demoralizing, agonizing, and unrelenting.
And wanting it to end? Worse guilt. And when it does finally end? Probably the worst guilt yet for feeling relieved that she’s not living that way any more and for feeling relieved that you no longer have to feel guilty for not being there.
So there’s really no good ending to this story for any of us.
Notice the caregivers in your world. Really see all your coworkers and friends who are bearing this burden on top of doing their jobs, raising their families, trying to take care of their own health issues, and travelling miles or even across country to do “the right thing.” Their stress is enormous. Maybe mention caregiver’s guilt and ask them how they are holding up. Maybe they’re not.
For another post dealing with preparations for death, click here to read “Happy Birthday to You: Birth and Death.”