Caregivers offer advice for families dealing with Alzheimer’s
Compiled by Natalie Hoefer
Catholic former caregivers of a spouse or parent with Alzheimer’s disease have plenty of helpful advice for those following in their path.
Here are some experience-based suggestions (outside of constantly turning to God) broken down by topic, as shared by Thomas Rillo of St. Charles Borromeo Parish in Bloomington and Carolyn Gardner of St. Joseph University Parish in Terre Haute, both who cared for their spouse, and Dyan Huey of St. John the Evangelist Parish in Indianapolis, who cared for her mother.
Seeking help
“Always get help, even if your spouse resists. Get help from the outset. ... You have to sublimate your ego—others can give care just as well [as you]. … Go to a support group. There are people there going through or who have gone through what [you are]. Hearing their stories helps. ... Don’t be afraid to involve family members. Sometimes they want to help but don’t until you ask.” —Thomas Rillo
“The Veteran’s Administration and Area for the Aging were helpful. Be persistent but kind [when talking with insurance representatives] because people can just bump you off.” —Carolyn Gardner
“You and the family are the last to see the problem, so get an assessment. … Have family unity as much as possible. Let someone be the driver, and the rest support them however they can—with prayers, money or their presence. Welcome the help—it’s all so a loved one can be taken care of.” — Dyan Huey
Self-care
“Number one is take care of yourself. Without your health, you can’t take care of them. You can’t do it all. Eat well, exercise. Continue to do things you like.” —Thomas Rillo
“Be patient. Laugh a lot. Go with the flow. Make friends with the other families—you’re all family at that point.” —Dyan Huey
“If you can manage to do some of the things you enjoy, do it.” —Carolyn Gardner
Understanding and handling symptoms
“Use improvisation. For example, Joan would say, ‘Oh, there’s my [deceased] friend Emily on the deck. I’m going to go say hi to her.’ I would play along a bit and say, ‘Well, I don’t think she’s here right now, but she’ll be by tomorrow.’ … Don’t tell them, ‘You have Alzheimer’s.’ You can’t be brutally truthful. … When you make eye contact, don’t convey sadness. Smile a lot and be upbeat around them, even if you don’t feel like it.” —Thomas Rillo
“Remember [their symptoms have] nothing to do with anything personal. If they forget your name, it’s [because of] what’s happening physically to their brain. It’s not intentional. … One of the things their brain loses is the filters you learn when you’re young—be kind and considerate, don’t swear or kick people. It’s good to know why they might swear more or act out. … The brain loses synapses between the part that deals with words and the part that deals with thoughts. So a word will fall into a sentence that makes no sense. … Be where they are, don’t fight it. Be with them on their journey in their head. Don’t argue with them, meet them where they are. … Every day is their new normal. … They can hear, so tone matters. … Even though they act like children, be respectful and cheerful. ” —Dyan Huey
Health care
“Talk with the doctor about a DNR [a Do Not Resuscitate order]. Be rational about treatments—don’t do a colonoscopy on a 90-year-old woman! … A good service is hospice. Ask for it when the person needs more hands-on than a CNA [Certified Nursing Assistant] can do. They step in, assess, bathe, sit with the person in need. At that stage, they need extra care, and you can’t do it all. If they get better, hospice goes away.” —Dyan Huey
Preparing for the future
“Once they’re moved [into a facility], clean out the house and get rid of it so there’s not so much to do at the end. … Plan the funeral and the Mass in advance. People are afraid to do that. This is a door we’ll all go through. Do it, so it’s less work in the end.” —Dyan Huey †
Related story: ‘God was always there’: Caregivers say ‘faith was part of the journey’