The Critic Critique

I am continually amazed by the number of people who truly believe they can tell a dementia caregiver what they “ought” to be doing—even if they have never had so much as a minute of responsibility in providing that kind of care.

I consider the account I heard from a woman (we’ll call her Jane) who had placed her husband in long-term care. Jane reported that her brother’s wife said—behind Jane’s back, of course—that Jane needed to, “put on her big-girl panties and take care of her husband herself.” She didn’t seem interested in understanding why Jane had put her husband in long-term care, so she didn’t know what Jane had gone through before making the very painful decision to let a care community become his permanent home.

Sister-in-law didn’t know about the time (after his formal dementia diagnosis) that Jane’s husband stood up over her in a threatening posture, causing Jane to believe he was going to hit her. She didn’t know about his scary and intense mood swings, his angry and unreasonable (and completely false) accusations that Jane was hiding money from him. She also didn’t know that once he was in long-term care, he actually did assault the community director, leaving her with a black eye and a shocking security camera video.

There are so many versions of “Jane” all over this country, and, in fact, all over the world. I recall from my own caregiving days how people seemed to think when they dialed my number, they were somehow being connected to the Complaint Department. It’s unbelievable how many people have no idea what being a dementia caregiver is really like, yet they seem to be “in the know” about how everything should be done.

This job is lightyears harder than it may appear—and truthfully speaking, it doesn’t even “appear” to be that easy. Every day caregivers deal with an untold number of issues as they go through the paces of providing care for a loved one: there are physical challenges like mobility issues, personal hygiene and grooming, as well as preparing meals and ensuring their elderly loved one is eating. Then there is listening to the repetition—their loved one asking the same question over and over, or telling the same story over and over. There is getting their loved one to the doctor, accurately dispensing medications throughout the day, making sure their loved one’s bills are paid, and answering a thousand questions from well-meaning relatives who just want to know “how everything’s going.” It can be so overwhelming at times, the caregiver loses track of whose life they’re actually living—their own, or that of their loved one needing the care.

Sometimes the safety and mental health of the caregiver demands that a change be made, and that a long-term care community might truly be the best option. People who haven’t actually walked every step of the road right along with the caregiver need to realize there’s a lot more to the story than what appears on the surface.

For those on the outside looking in, please don’t assume you know what “ought” to be done. It just could be that, in the same circumstances, the harshest of critics might not be able to do the job as well as the caregiver they’re criticizing.

God bless you, caregivers—whether the one you care for is at home with you, or if they’re living in long-term care—you are amazing!