Dear Well-Meaning Person:
I’ve been taking care of OUR family member with dementia for some time now. I make sure he eats his breakfast, she gets to appointments, and he has clean clothes. I’m the one who hears, “What time is it?” multiple times a minute. I’m the one up at 2 am because she is crying and looking for her mom. I’m the one who gets in trouble at work because I have to stay home when the sitter’s kid is sick or her car won’t start. I’m the one who notices a change in behavior and gets him checked for a bladder infection (and yes, he had one a few weeks ago but don’t worry, I handled it). My primary care provider constantly lectures me about taking time for myself and handling stress better. I do the best I can. And then you show up. Or call. “I don’t know what the fuss is about,” you say. “Mom doesn’t seem that bad. Do you even think she has dementia? Maybe the doctor made a mistake.”
I hate to say this, but you act like a seagull. You fly in, make a mess, make a lot of noise, then fly back out–leaving me to clean up your disaster. Maybe I should have known better. I accepted your offer of help because, well, I REALLY needed a break. I haven’t had an uninterrupted night of sleep for the past 10 months. Or maybe I wanted to attend a family event for the first time in years. I am not an ungrateful person but, holy cow! I am truly impressed that you managed to undo in 48 hours what took me months to accomplish. Why would you change Mom’s medication schedule? What possessed you to take Dad to a crowded restaurant and then get angry at him when he tried to leave halfway through the meal? Maybe you think you know better than me…but everyone with dementia is different. Yes, I know you took care of your mother-in-law, who was 95 years old and frail and “was confused.” My experience caring for a healthy 55-year-old man with early onset Alzheimer’s disease is so different than yours–we are talking different dementia universes. Or try being a parent caring for an adult child with fronto-temporal dementia. Precious few support groups for that situation!
Here is the part that hurts the most. I find out from others that you felt the need to tell everyone that you think I am inadequately caring for our family member! There is a reason that Mom gets certain medications at bedtime; I worked it out with her provider after multiple trials and errors. I am not “over-medicating” her. I don’t care that you don’t believe in medications and you think that her dementia can be “cured” by some supplement or coconut oil or whatever goofy thing you saw on an infomercial. If Dr. Oz had the cure for dementia, do you think he would be hosting an afternoon talk show?
There is a reason I do not take Dad to crowded restaurants: he becomes completely overwhelmed with all of the noise and people and he becomes upset. His brain is shrinking because of the dementia and he has fewer brain cells to process all of that stimuli. For him, it’s like trying to take a sip of water from a fire hose. I’m not “keeping him isolated.” We go on outings but I am very careful that the location is on the quiet and not-so-busy side so that he enjoys himself without getting overwhelmed.
I could go on and on and on but I am too tired and exhausted to deal with your stuff. So, here is what I’m going to suggest. The next time you feel compelled to criticize or undermine my care, close your mouth and open your checkbook. The cost of caregivers to stay with our family member while I get a break is roughly $600/24 hours. Cash works, too.
This post is dedicated to family members who experience this on a regular basis. Special thanks to Denise Ledlow, RN, who shared the term “Seagull” with me!
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.