5 Ways to Cope With a Loved One’s Dementia

Photo: NADOFOTOS / iStock / Thinkstock
“How can I cope with the guilt?” a family caregiver asks. “I’ve been sick so I haven’t brought my mom the Listerine she asked for in her assisted living facility. Today I got this voice mail:

‘I see you ****ed me over again. You didn’t bring me any Listerine and all my teeth are going to fall out. They stole my top sheet and pillowcase and they’re just a bunch of *******s. I’m really mad at you for not bringing me any Listerine.’

“I’ve confirmed that they’ve found her sheets and offered her mouthwash, though not the kind she likes. We all do our best, but it’s a devastating situation for my mom as well as me. What can I do?”

We asked our community of family members and professional caregivers on Facebook how they would handle this situation. Here are the strategies they shared:

Ask for help

“Ask someone to help you out! My dad was in a care home for 11 years and I really miss going there. I would gladly have taken your mom her Listerine and had a visit. Ask for help!”
“The only thing you can do is your best. Remember that she probably made mistakes as a mom and you will too as a caregiver. But do your best. In regards to getting things for her, I would suggest setting up an account with a pharmacy that delivers for needed supplies. That way if you can't get her things for whatever reason, you could call and have items delivered. As for the message, delete it (if you haven’t already). There is no need to continually listen to it.”
Takeaway: No one can do everything alone. And it’s important to have support in place for when you do fall under the weather (or take a well-deserved vacation). Don’t be afraid to ask friends, family, neighbors, home healthcare workers, service-oriented pharmacies, or even acquaintances for help when you need a break.

Don’t take it personally

“Remember not to take it personally. Let go of the guilt, and know it’s her disease. Keep doing what you can, and remind yourself that’s enough. My dad had Lewy Body Dementia, and I went through years of being the bad guy because his brain could no longer process why I wasn’t there when he wanted, and why he couldn’t have or do certain things anymore. He called the police a number of times to “put me jail,” and that was very hard to accept, but I had to remember it was the dementia. I still hated he was upset, but you can’t always fix it. You must take care of you too.”
“Know that it’s the disease and that you’re doing the best you can. It’ll pass. Just remember that your motivation is love and when this is over, you will be able to look in the mirror and know you helped.”
“Don’t take it personally, it’s the disease, my mum had it for years, she used to hit my sister over nothing, and she cried on my shoulder begging me to take her home, it’s heartbreaking.”
Takeaway: It’s hard not to take it personally, but it’s better not to take it personally. The best way to achieve what might seem like magic is to practice. Practice calm responses to outbursts—real and imagined. That is, practice being calm when you face real situations, and practice being calm through strategic visualization, where you visualize yourself not taking words, messages, or actions personally. It also helps to use positive self-talk. Tell yourself, “I’m not going to let this get to me” or “This isn’t about me—this is the dementia talking.”

Don’t feel guilty

“No reason to feel any guilt at all.”
“I hate to say this, but it is quite common and you must not take on the guilt. It is the disease . . . nothing to do with the deep love she feels for you.”
“She’ll live! Do not accept any guilt! You’re sick!!!!”
Takeaway: Rationally, there’s no reason to feel guilt—especially when your loved one’s needs are met. But emotionally, guilt is a pervasive feeling that’s hard to shake. Leah Eskenazi of Family Caregiver Alliance puts it into perspective:
“Change ‘guilt’ to ‘regret. Guilt is you did something wrong, regret is that you are in a difficult situation and sometimes you have to make difficult decisions, but they are not wrong.”

Acknowledge how you feel

“I’m so sorry you are going through this. To be told ‘don't feel guilty’ doesn’t help! We feel what we feel. Let’s just acknowledge the feelings and know we are doing our best.”
Takeaway: Guilt, anger, worry, hopelessness, grief—these are all natural emotional responses to the stress of caregiving. It is indeed important to acknowledge and accept your feelings—and to talk about them.

Know you’re not alone

“The hardest part of being a caregiver is setting boundaries. So much of our lives becomes about the other person. We get lost in the doing.”
“It’s the hardest job I’ve ever had.”
“So many of us have been there and while that doesn’t stop you from hurting, please know that you’re not alone in this. Rest and get well. In the long run, that’s what’s best for her too. Blessings.”
“You are all heroes. Bless you for taking care of your loved ones. We are at the beginning of this journey and your words are so much comfort.”
Takeaway: Unfortunately, Alzheimer’s and other dementias are on a fast rise. Every 67 seconds, someone in the US develops Alzheimer’s, the Alzheimer’s Association reports [PDF]. But while dementia has the power to devastate lives, it doesn’t have to. And there is a bright side: there are others who know what you’re going through—and how to cope. If you need to connect, look for memory cafés in your area, join an online support group through an organization like the Family Caregiver Alliance, or find an in-person support group through the Alzheimer’s Association.   
How do you handle guilt and dementia? Leave a comment below, or join the discussion on Facebook!
Erin Harris Image
About the Author

“I believe that more often than many people think is possible, we can prevent problems from getting out of control. We can make each other safer.”

Find Our Podcast