Apr 23, 2015

1 of the Worst Emotions of Alzheimer's Caregiving "Guilt"

Guilt may be the most annoying of the "seven deadly emotions" of Alzheimer's caregiving. It's right up there with resentment, worry, fear, anger, loneliness, and grief.

Alzheimer's Caregiving Guilt | Alzheimer's Reading Room

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By Paula Spencer Scott
Alzheimer's Reading Room

Guilt is especially bothersome because it tends to be the least rooted in reality. There's often no good reason to feel guilty, but we feel it just the same.

Guilt usually stems, ironically, stems from caring so much. We want the best for the person living with Alzheimer's. We want things to go well. We want them to be safe, happy, involved, free of pain and worry. Our intentions are good.

We are good!

But inherent in those lofty aspirations is the nagging feeling of never quite being good enough.

Forms of Guilt

Guilt is pesky because it comes in so many forms:
  • Guilt for what I'm not doing. I should be entertaining her 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 really 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 love this person!
  • 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 for not being there 24/7 (even though the person with dementia doesn't seem to mind).
  • Guilt for being happy or well. "I'm in a good mood today -- oh wait, I shouldn't be, because my partner 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 cannot ignore this persistent emotion, whispering in your ear no matter what you do or don't do. 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 what I call "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 some home care so there are more hands on deck).

Bad guilt causes us to beat ourselves up for reasons that are unrealistic and counterproductive — not to mention that all that stewing and self-flagellation wastes precious mental energy.

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. 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.
This article was adapted from SURVIVING ALZHEIMER'S: Practical tips and soul-saving wisdom for caregivers.

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Paula Spencer Scott | Alzheimer's Reading RoomPaula Spencer Scott is the author of SURVIVING ALZHEIMER'S: Practical tips and soul-saving wisdom for caregivers. She is a contributing editor at Caring.com, a former Woman's Day magazine columnist, and a fellow of the Met Life Foundation Journalists in Aging program. Her 11 other books include Momfidence, The Pregnancy Journal, and five books co-authored with doctors. Four close family members have had dementia.

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