Guilt and the Alzheimer’s Caregiver

By Robert Elmer III on September 10, 2017 in Uncategorized
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It’s been said that “no one can make you feel guilty without your permission.” This is especially true when it comes to caregivers of those with Alzheimer’s dementia. Recently, I came across two women, one from Massachusetts and one from Connecticut, who were really struggling with this issue. It was now time for their respective loved ones to leave home and transition to a community that could better meet their needs. In other words, they now required a level of care that these daughters couldn’t provide in their homes.

I’ve said many times that there is no cure for aging and there is certainly no cure for Alzheimer’s dementia. It would be wonderful if the aging process started to reverse itself once we all hit our 85th birthday, but such is not the case. Alzheimer’s is a progressive illness and that means, as time moves on, that things are only going to get worse. That’s the harsh reality of this insidious disease, and anyone and everyone who may be in the caregiving universe has to come to grips with this reality.

During my discussions with these two daughters, I got the feeling that they felt they were somehow responsible for their loved one’s illness. Combine that with the guilt they felt because their love one’s needs exceeded their abilities, and you can understand why they were in a “bad place.” After all, hadn’t Mom always taken care of them when they were young? Wasn’t she always there when they needed an 11th hour baby sitter or when some other crisis popped up? Now it’s their turn to return that kindness with their own unselfish sacrifices, right? Wrong.

Regardless if you are a natural caregiver or not, there is no place for guilt when it comes to doing what’s best for your loved one. I understand the vows husbands and wives made to each other in front of God and witnesses, but that does not mean they are obligated to “go down with the ship.” You should be doing what is best for both of you.

Caring for a loved one with Alzheimer’s will bring out the best and the worst in you. You may be compassionate, sensitive and caring, but it’s also OK and normal to feel frustrated, angry, depressed and, as a result, guilty.

Grappling with guilt isn’t easy, though, so let’s look at some ways to deal with it: 1. Remember, you’re in a no win situation as things are only going to get worse. 2. Accept your shortcomings; not everyone is Florence Nightingale. 3. Don’t lose your sense of humor. 4. Get some physical exercise to reduce your stress. 5. Don’t go it alone; take advantage of the many resources available to you. 6. Accept help. It’s easier to accept help than to ask for it. 7. Remember that in order to care for them, you have to take care of you.

 I’m happy to report to you that these two women did place their respective loved ones in very good skilled communities. In one case, it was the same nursing home where her mother had worked as a nurse for years. The senior staff knew her and embraced her, literally. The other daughter, with the blessing of her entire family, placed her mother in a community where she was surrounded by a well trained, caring and devoted staff. She visits her regularly, but now she doesn’t worry about her when she’s not there.

There is no shame in admitting to yourself that you can no longer deal with the unbearable situation you may be in and that you can no longer handle every challenge that comes your way. As someone once said, “When guilt becomes the dominant motive in caregiving, help is clearly indicated.”

Questions? Email me at repe@careforcaregivers.org. Remember, Join the Journey.

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Robert Elmer IIIView all posts by Robert Elmer III