Help for the Nagging Guilt of the Dementia Caregiver

Help for the Nagging Guilt of the Dementia Caregiver by Paula Spencer Scott, author of SURVIVING ALZHEIMER'S

Help for the Nagging Guilt of the Dementia Caregiver
by Paula Spencer Scott, author of SURVIVING ALZHEIMER’S

I call guilt the leader of the “seven deadly emotions” of Alzheimer’s caregiving — up there with resentment, worry, fear, anger, loneliness, and grief. Guilt is a tough one because everyone feels it to some degree, almost every day.

Let’s look at some common guilt scenarios:

* Guilt for what I’m not doing. I should be entertaining Grandma more…I should cook healthier meals…I ought to get us both exercising…

* Guilt for what I’m doing. I feel bad when I take my husband to the day center, but I need a break…I shouldn’t rush Mom through her shower like that…I ought to be able to handle this without whining — after all I’m her daughter!

* Guilt for not doing enough. After years of struggles, one caregiver agonized over whether it was time to place her diabetic and demented mom, who was obese and becoming incontinent, into a care facility. When her mom needed an amputation, the discharge planner and doctors agreed there was little question that this would be best. A good option was found that worked out well all around. But the caregiver nevertheless felt she had let her mother down. “I feel like there’s more I could have done….”

* Guilt for being away. Long-distance caregivers feel their cash and phone support isn’t enough. Those who use respite care are pricked with feelings of insufficiency because they can’t do it 24/7.

* Guilt for being happy or well. “I’m in a good mood today — oh wait, I shouldn’t be, because my husband has Alzheimer’s.” “Why am I the healthy one and he’s in such terrible shape?”


What you should know about guilt:

As the examples illustrate, there’s no end to opportunities for guilt in the realm of Alzheimer’s caregiving. You can’t ignore this pesky emotion. You can’t will it away. Guilt simply is. 

Occasionally guilt can be a productive emotion. Call it “good guilt” — the nagging voice in our heads that causes us to examine our behavior and decide whether a change is in order. If you feel guilty because you were impatient with your loved one, for example, it’s like a little poke reminding you to try harder or take a deep breath next time. Guilty you didn’t go to the gym? Yes, that would have been good for you, and what would make that possible?

Unfortunately most of what eats us alive is “bad guilt.” Bad guilt has no constructive underbelly. Bad guilt makes you feel bad about a situation that you can’t help (your parent has to move to rehab, for instance) or that is actually a positive for you (you’ve hired home care because you can’t do it all yourself).

Then we beat ourselves up for reasons that are unrealistic and counterproductive. All that stewing and self-flagellation wastes precious mental energy.

(If you’re a mother, you’re probably a champion at guilt. Women who are actively being caregiving to both a parent and children at the same time are the squishy-squashy filling of triple-decker guilt sandwiches.)


What can help you: 

* Beware the “red flag words”: Ought to, should, could have, always, never. Ban them from your vocabulary; they’re warnings that you’re setting the bar too high. When you hear yourself saying, “I should…” flick your forefinger against your wrist as a reminder. “Always” and “never” are toxic because they set us up for future guilt: “I’ll never put you in a home.” “I’ll always be here.” Don’t promise things you can’t be 100 percent certain of — most things in life!

* Don’t discount yourself. Ironically, selfless people (the dominant caregiver personality) tend to feel proportionately more guilt. Because they work so hard aspiring to an ideal of doing things for others, they tend to ignore the inconvenient reality that they have to look after themselves all the more. They may even forget that they, too, deserve extras and shortcuts and breaks. When they finally get around to a slow bath or a lunch with friends, it feels as alien as it does great. Trust your needs, your perceptions, your value in this situation.

* Aim to be a B+ caregiver. Straight As are for grad students and crazoids, not mere mortals with houses to keep, relationships to tend, jobs to do, and sanity to uphold. No caregiver anticipates every fall or prevents every bedsore. Tempers boil. Germs sneak in. Bills slip through unpaid. In other words, life happens. No matter how much you love the person or feel you “owe” him or her, you’ll all be happier if you lower your standards to the level of real life. By aiming for the B, you’ll achieve good marks consistently, and occasionally surprise yourself with an A, rather than constantly feeling like you’re missing the mark.

* Remind yourself of your true goals here. Ideally, you should be striving to give your loved one a secure life free of worry or pain, while maintaining your own quality of life and health. Don’t beat yourself up over the small stuff.

* Steer clear of comparisons. We feel guilt when we feel that we’re falling short of some imagined ideal. Where do those ideas come from? Often, from our own heads. We compare ourselves to someone else, without stopping to calculate what their stress levels or support situation is like, without allowing that every case is different. It doesn’t matter if Nancy Reagan seemed like a saint over her husband’s disease but all you want to do is cry and complain. Were you inside their house, seeing what went on? All that matters is you and yours, and how to make your hard situation as easy as you can.

* See it as a sign of strength, not weakness, to enlist help. Strong, smart people know that Alzheimer’s care is not a task for the isolated and solitary. The more you can delegate and share, the better life feels. Only those with too much hubris and willful ignorance of reality think they can do it by themselves. And when strong, smart people get help, they don’t look back and feel guilty about it.

* Get the doctor’s (or a therapist’s) ten cents. There’s nothing like hearing from a neutral third party, “No, you have nothing to feel guilty about in that situation.” Often we don’t believe the obvious unless we hear if from a trusted, neutral source.

* Print and post these promises to yourself:

1. I’ll apologize when I lose my temper, but I realize that caregiving is so chock-full of temperature-riling situations that eternal calm is impossible.

  1. I’ll be there for my loved one, but I’ll continue to run my own life at the same time.
  2. I’ll let myself grieve and cry and feel sad instead of trying to keep a chipper smile on my face all the time.
  3. I’ll accept or ignore criticism for what it’s worth (or not worth) rather than letting it eat at me.
  4. I’ll quit blaming myself when bad things happen. Bad things happen.
  5. I resolve to take care of me, not just my loved one. Because eventually I may be the one who needs care, and better it be later than sooner.

Excerpted with permission from SURVIVING ALZHEIMER’S: Practical tips and soul-saving wisdom for caregivers (Eva-Birch Media) by Paula Spencer Scott, now available on See the Facebook page at .

Paula Spencer Scott is the author of SURVIVING ALZHEIMER’S, a contributing editor at, and a fellow of the Met Life Foundation Journalists in Aging program. Her 11 other books include Momfidence, The Pregnancy Journal, and (co-authored with Harvey Karp, MD) The Happiest Toddler on the Block. Her father and three other close family members have had dementia. She lives in the San Francisco Bay Area.


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