Caregiving for an Alzheimer's patient is a marathon, not a sprint. "Alzheimer's can go on for a long time," says Ruth Drew, director of client and information services for the Alzheimer's Association. "It can be three years or as long as 20 years from the beginning of symptoms until a person reaches the end of her life." As the intensity of the caregiving ramps up, so too does the emotional intensity of the process, says Drew. "You're grieving each loss," she notes. "The day a person doesn't remember how to do something they've always been able to do. The day you have to tell your mom she can't drive anymore. The day your dad doesn't remember your name, or that he's your dad." While caregiving can feel lonely and overwhelming, these 10 tips from experts can help you and your family through the process.
It can be hard to get medical professionals, let alone other family members, to take early symptoms seriously, but you see things when you're a caregiver that professionals might miss. "People try to brush it off. They'll say, 'Oh, it's just old age,' " says Maria Ciletti, a registered nurse and author of I Have to Leave You Now: A Survival Guide for Alzheimer's Caregivers. "Get your loved one to the doctor and get a diagnosis. That way they can get on the medications early, which buys you some time."
Durable powers of attorney, health care proxies, and living wills are all documents you'll need as the disease progresses. Take care of the paperwork early, while your loved one can still be part of the process. "In the early stages a person can have his or her say," says Drew. And there are practical reasons for including the person with Alzheimer's, adds Drew. "When there's conflict at the end of life within a family, often it's because everyone wants to do the right thing but they don't agree about what the right thing is," she explains. "If they didn't have these conversations with Mom early on, there may be no way of knowing for sure what she wanted."
This can include friends, family, and neighbors as well as doctors, nurses, and caregivers, says Drew. "Look at everything that needs to be done and say, 'Which are the things only I can do, and which are the things that can be farmed out?' " she suggests. The Alzheimer's Association runs a help line 24 hours a day, 365 days a year (800-272-3900) and online (alz.org), and hosts chapters and support groups around the country.
"Know what you're dealing with," advises Drew. "Know about the disease, know about the progression of the disease, know about what works in caregiving." For instance, many facilities offer ongoing education for families and friends, and they're often open to the public.
"When it gets to be too much, tell somebody," says Ciletti, who cared for her mother and has worked on Alzheimer's wards in nursing homes. "I ended up in the Emergency Room on Christmas Day, curled up in a ball from having a huge panic attack, because I was exhausted." While you may want to do everything yourself, it's important to learn to ask for help. Ciletti recommends starting small—asking someone to come sit with your family member for an hour so you can go to the grocery store, or even come sit with you for company. "This becomes a rigorous, physical, 24-hour-a-day job," says Drew. "You can't keep up that level of intensity. Eventually we all break down if we don't get a break, if we don't get some rest, if we don't attend to our own nutrition and health care and basic needs."
There's no script for Alzheimer's; it can progress slowly or quickly, and the process is different for every family. "I hear over and over again from folks, 'OK, we've got a plan and as long as things stay the same we've got this covered,' " says Drew. "And the one thing I know for sure is that things won't stay the same. This is a disease that progresses." The constantly changing nature of the illness can be frustrating, but if you know that ahead of time you can manage it more effectively.
"If you get tense or in a hurry and try to speed things up, all you do is shut down the person with Alzheimer's," says Drew. "Assume a calm, gentle spirit. Be kind and gracious. That allows the person to be at their best and have the best outcome."
Getting angry too easily, withdrawing, sleeping too much or too little, feeling anxious or depressed, feeling exhausted—these are all common signs of stress, especially for caregivers. Take the "Caregiver Stress Check" on the Alzheimer's Association website, and get help if you need it.