60 Things Every Caregiver Needs to Know
These research-backed tips and strategies from other caregivers who have been in the trenches will help you give the best possible care to the person you love.
Don’t wait too long
“Most people wait way too long before getting their loved ones the help they need. When you go to visit Mom or Dad, be a gentle detective. Open the medicine cabinet, check the fridge for moldy food, and go through that pile of unopened mail. Some red flags that they shouldn’t be left alone: a formerly tidy house that is now in disarray, unpaid bills, missed medications, bad hygiene, or inappropriate clothing (like wearing a sweater in the summer).” – Carolyn Brent, eldercare legislation advocate and author of The Caregiver’s Companion. Use these smart ways to make your home safer for aging parents.
Don’t promise to keep them at home
“Never promise someone you will keep them at home. It can come back to haunt you if you end up having to place them in a long-term care facility, and many, many people require a level of care that you simply can’t provide at home. Instead, say something like, ‘We’ll do everything we can to keep you at home.’” – Peter V. Rabins, M.D., professor at the University of Maryland and co-author of The 36-Hour Day: A Family Guide to Caring for People With Alzheimer’s Disease, Other Dementias, and Memory Loss in Later Life
Look for an office for help
“Every community in the United States has an office on aging that specializes in helping senior citizens find the resources they need. It can connect you to transportation services, meal delivery programs and more. To find one, type an address into eldercare.gov.” – Elinor Ginzler, senior director of the Center for Supportive Services at the Jewish Council for the Aging of Greater Washington and co-author of Caring for Your Parents: The Complete AARP Guide. These are signs that your aging loved one needs more care ASAP.
Find a support group
“You may think you don’t need it at first, but make sure you find a support group, either in your community or online, around whatever illness your loved one faces. There is so much practical information out there about how to solve all types of problems. And you will need a place to go in your darkest moments, a place with people who understand what you’re going through.” – Michele DeSocio, of Freehold, NJ, who has been caring for her mother who has Alzheimer’s for 17 years
Be aware that it’s gradual
“Nobody wakes up one morning and says, ‘Today I’m going to be a caregiver.’ Unless there’s something like a fall or a stroke, it’s usually a gradual process, so it can be tough to recognize the signs. My mother lived with me for five years, but we didn’t realize how bad she was until she spent a weekend at my sister’s. Because my sister’s bathroom wasn’t the same as the one my mom was used to, she went in and couldn’t figure out what to do. Finally, she says to my sister, “I’m sorry, I don’t know how to take a bath.” My sister looked at her and was like, ‘What?! What do you mean, Ma?’” – Michele DeSocio
Make them safer at home
“As your parents start to need care, take steps to make them safer at home. Install grab bars or shower seats, remove area rugs and make sure they have plenty of night-lights. Get rid of stools and ladders, and move things down from higher cabinets. You can also put in video monitors and other technology that will do things like remind them to take their pills, notifying you if they don’t. If you want help, there are agencies that specialize in home modifications.” – Bart Astor, author of the Baby Boomer’s Guide to Caring for Aging Parents.
Have a family meeting
“When it becomes clear that a family member is going to need care, hold a family meeting, using video conference if necessary. Bring a list of tasks and talk about what each of you can do. Just because a person is far away doesn’t mean they can’t help. They can pay bills, handle insurance claims or provide emotional support by Skyping with Mom every morning. If you can’t have the meeting without fighting, bring in a family therapist, a social worker or another professional to help.” – Francine Russo, speaker and author of They’re Your Parents, Too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy. This is how to transition your parents into at-home care.
Use adult day services
“To give yourself a break, look for an adult day services program where you can drop off your family member during the day. They typically offer social activities, snacks, personal care and supervision during the day. We found one for my dad through our local hospital, and it was one of the best things we did for him.” – Rick Lauber, a former co-caregiver for both of his aging parents and author of The Successful Caregiver’s Guide
Always have an answer
“The next time someone asks what they can do to help, have an answer ready. It can be, ‘Is there any chance you could cook dinner on Tuesday?” or “I’d really love it if you could take Mom to the doctor on Friday.” People who ask to help really do want to help. So lose the pride. You’re on a battlefield. You’re a warrior and you need a team.” – Michele DeSocio
Don’t forget about your neighbors
“Don’t forget neighbors. They may be able to take Mom to the doctor or deliver a meal to Dad once a week. When my dad was sick, the neighbor he had lived next to for 40 years collected his newspaper every morning and put it on his front step. Then she’d check to see whether it got picked up. If he didn’t come out to get it, she knew to knock on the door or give him a call. It was a small thing, but it was a big help to me.” – Elinor Ginzler
Use respite care
“Many organizations across the country offer respite care. That’s when hospice or an assisted living facility takes care of your loved one overnight for a certain number of days to give you a break. You can find a list of respite care providers by state at aplaceformom.com/respite-care.” – Diana Denholm, PhD, a medical psychotherapist and author of The Caregiving Wife’s Handbook
Take a break
“I know you think no one can take care of your loved one as well as you can (and you’re probably right), but take a break anyway. Studies show 61 percent of caregivers are depressed, a rate six times the national average. Ask a friend or family member to take over for a few hours while you go shopping, catch a movie, or simply curl up and read a book. Even short breaks can make a big difference emotionally.” – Peter V. Rabins
Keep up your friendships
“Keep up your friendships, even if it’s just by phone and Internet. Many caregivers see their whole social world shrink. They feel like they shouldn’t go out and have fun because they have all these other responsibilities. But a number of studies have shown that the people who are doing better emotionally as caregivers are those who maintain their social contacts.” – Peter V. Rabins
Write down what you enjoy
“Many caregivers forget what they like to do in their free time. So I tell people to write down ten things they enjoy that provide them with satisfaction, but that can be done in short chunks of time. It may be baking brownies, taking a walk or going shopping. Your assignment is to figure out how you can get some of those things done every week.” – Elinor Ginzler
Share your feelings of frustration
“Caregiving can destroy relationships. You will have a lot of emotions and nasty thoughts running through your head. You’ll be angry and resentful and frustrated. And there will be things you want to say to your loved one that you shouldn’t. All of that is normal. Find a friend or therapist you can share these feelings with who won’t judge.” – Diana Denholm
Don’t argue with a dementia patient
“One thing I’ve learned is that you can’t argue with a dementia patient. They can’t live in your world so instead, you have to learn to live in theirs. If Mom sees someone in the corner, Mom sees someone in the corner. You don’t say, ‘Mom, there’s no one there.’ You say, ‘Yeah, Mom, I brought him here with me,’ and change the subject to something else.” – Michele DeSocio. You must ask yourself these questions to keep your aging parent safe.
Explain what you’re doing
“Helping someone with Alzheimer’s or dementia do an ordinary task, like getting dressed or brushing teeth, can be difficult because it doesn’t make sense to them: why are you helping them do these simple things when they are an adult? One thing that often helps is to explain what you’re doing one step at a time, in a matter-of-fact way (“Let’s take your arm and put it in the sleeve. Great.”). For some reason, it’s calming and it helps them get over the strangeness of the situation.” – Peter V. Rabins
“When you’re caring for someone with dementia who’s agitated, stay calm, talk quietly and move slowly. Let them do what they want as long as nobody is getting hurt. Or try a diversion. Is there a puzzle waiting to be put together, socks and washcloths to be folded, or something to watch on TV? Can you get them talking about something from their childhood? Distraction is key.” – A professional caregiver in Milwaukee
It’s OK to lie
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“Occasionally, you have to lie. If your loved one keeps asking when her mother is coming to see her, if she won’t let it go despite all of your attempts at distraction and you know the truth will only make her more upset, I believe it is appropriate to lie. You could say, ‘She’ll be back on Monday. She doesn’t feel well today.’ It’s one of the rare circumstances in life where lying is justified because it really is for that person’s good, and they’re unable to comprehend the truth.” – Peter V. Rabins
“It’s OK to laugh at your circumstances. One couple I know, the wife had dementia and it got to point where she could not bathe herself, so her husband was helping her get undressed and into and out of the shower. The husband had never been good at that stuff before. At one point, he stopped and said, ‘Honey, did you ever think I’d be doing this?’ She looked at him in a moment of clarity and said, ‘Oh my God, no,’ and they both started to laugh hysterically. The humor took away all her anxiety and they had just a nice moment together.” – Elinor Ginzler
Decide if you want to hire or use an agency
“Once you decide to bring in outside help, you have to decide if you want to hire on your own or use an agency. If you use an agency, you will pay more per hour, but the agency will do the training and the vetting and provide supervision. If you hire on your own, you’ll have more choice and control, but you’re on the hook for payroll taxes and to find a replacement if she calls in sick.” – Jody Gastfriend, vice president of senior care at Care.com
Ask about experience
“Your very first question should be, “How long have you been a caregiver?” Because there’s extremely high turnover in the industry, if they’ve been doing it for a few years, that’s a great sign. It usually means they’re not just in it for the paycheck. I may be biased, but older adults—those who have raised kids and especially those who have taken care of their own parents—are often a better fit for the job than younger people.” – JoAnn Page, a professional caregiver in Hot Springs, Arkansas
Avoid independent contractors
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“Avoid agencies that employ caregivers as ‘independent contractors.’ Last year, a court said caregivers had a right to the federal minimum wage and overtime, but many agencies have started using independent contractors to evade those laws. Look for a company that treats its caregivers as W2 employees. How a worker is treated usually affects the quality of care your loved one receives.” – Sarah Leberstein, senior staff attorney at the National Employment Law Project
Monitor their driving
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“Remember, driving is about ability, not age. If you’re arguing with a loved one about whether it’s safe to drive, ask them to take a senior driver safety assessment. If they pass, promise that you’ll lay off. The assessments typically cost about $250 and your local hospital can help you find one. Sometimes, instead of giving a yes or no on driving, the examiner may suggest ways your family member can change their driving to stay safe. They may say he shouldn’t get on the highway, for example, or that he should avoid left turns, making three right turns instead.” – Elinor Ginzler. Watch out for these urgent signs that it’s time for your parents to hand over the keys for good.
Join the bath to calm anxiety
“If you’re having a hard time bathing someone, hop in there with them. It’s a wonderful, positive way to reduce their anxiety, and it sends the message that you’re both in this together. If you don’t want to be completely undressed, put your bathing suit on.” – Elinor Ginzler
Don’t tell them they can’t do something
“The more you tell someone they can’t do something, the more they get angry and push back. One woman I cared for kept arguing with her family because she wanted to drive. When she asked me, I didn’t say “no; I agreed to help her. So we went down to the car and she struggled to get in. I said, ‘Does your knee hurt?’ She replied, ‘Oh, yes, I can’t drive until my knee gets better.’ Putting someone off subtly, day after day, works better than flat-out telling someone ‘no.’” – Imelda Brann, a professional caregiver in San Francisco
Sit by her side
“If the person you love is dying, sit by her side, talk to her and hold her hand, so she knows she is not alone. People think that if someone’s eyes are closed or if they are unconscious, that they aren’t aware of anything—but I’ve seen that’s not true. Many times, I’ve seen a dying patient who is upset and agitated in their sleep visibly relax and calm down when a family member comes over and takes their hand. The person you love is still there.” – Gertrude Hii Beamers, a professional caregiver in Tucson, Ariz.
Cherish the good moments
“Hold on to the good moments. My mom can barely speak, but for some reason she can sing songs. So I’ll play the Beatles and she will hold my hand and sing, ‘Michele, My Belle” and give me a kiss. I call times like that ‘Treasure Chest’ moments. If you’re a caregiver, cherish those moments—you will need them when you’re having a tough day, and they will remind you why you’re doing this.” – Michele DeSocio, of Freehold, NJ, who has been caring for her mother who has Alzheimer’s for 17 years
Use the words assistant or housekeeper
Hire an “assistant” or a “housekeeper,” not a caregiver. Elderly adults who were once successful business leaders are often comfortable with an “assistant,” since that’s a term and a relationship they’re familiar with. Another option: Say you’re hiring a housekeeper to help with laundry, meals, and household tasks. Once the relationship is established, the worker can gradually start helping with personal care.
Call a higher power
Have your doctor write a “prescription” that says your family member needs “help at home three times a week for four hours.”
Have the caregiver join you for coffee, a doctor’s visit, or another outing. Eventually, find a reason to duck out so your parent and the caregiver can spend time alone. Gradually add time and responsibilities.
Do a favor for you
Tell Mom or Dad you have new benefits at work you want to try out. Alternatively, be honest about how worried or busy you might be. Ask your parents to try a caregiver because it will help you.
Give a job description
Before you hire a caregiver, write a job description and spell out exactly what you expect, whether it’s meal preparation, specific housekeeping tasks or taking your loved one on walks. Be very honest about how much help you need, and try to remember that caregivers are here to take care of their client, not the other people in the house. They tend to get resentful when you ask them to do things that weren’t clearly spelled out beforehand.
Pick a point person
When siblings disagree about what should be done for Mom or Dad, they give the caregiver conflicting guidance. Agree on one person to be the point of contact so caregivers know what to do.
If you find a caregiver who sticks around, you’re in luck
The job has intense physical and emotional demands, not to mention low pay. Turnover in the caregiving industry is an astounding 61 percent, according to a 2015 study.
Sadly, some caregivers are abusive
The University of California, Irvine, Center of Excellence on Elder Abuse and Neglect found that 47 percent of dementia caregivers mistreated their patient. In another study, 60 percent of caregivers reported they had been verbally abusive, and 5 to 10 percent reported they were physically abusive. Fourteen percent said they were neglectful. It’s not a bad idea to install some monitoring cameras; you can even let me know they’re there as a courtesy. These are signs that your elderly parent shouldn’t be living alone anymore.
Some are rude
One woman I took care of was very rude at first. She threw a glass of water in my face just because there was condensation on the glass. She cursed and yelled at me. Sometimes, I had to go into the bathroom to cry. But little by little, I learned more about her and we became close. By the end, when she went into the hospital, she wouldn’t let anyone touch her except me—not even the nurses or her family.
Stand up for yourself
“One thing that’s hard for a lot of wives is that their husbands tend to prefer that they do the caring, even if you can afford a nurse. If you’re in that position, you’ve got to stand up for yourself. My husband wanted me to drive him to dialysis and sit with him three times a week, but that was just too much time for me—it was forcing me to miss my own doctor’s appointments and it meant I’d have no time for myself. So I put my foot down and found a very reliable car service. My husband squawked a bit at first but that’s what we ended up doing. He was cared for safely and I still had some time to myself so I didn’t also go down the tubes.” – Diana Denholm
Build in visiting time
“If you’re long distance and you go to visit, make sure you build in time to actually visit. Long-distance caregivers tend to have a list a mile long: they’re going to doctor, getting that prescription filled, stocking the pantry or fixing something in the house. Then in the end, they haven’t spent any time just visiting Dad.” – Elinor Ginzler
Give them a way to get your attention
“Give your loved one a way to communicate quickly. It can be a bell, an air horn or an intercom, but as they get sicker and sicker, that will make it easier for them to call you if they need something. I had a Swiss cow bell for my husband.” –Diana Denholm
Have rote responses
“You are going to be constantly bombarded by people with opinions about medicines you should try or doctors your loved one should see. And people will always be asking how your loved one is. Though they mean well, all of those conversations can be exhausting. I recommend having some rote responses ready, such as “He’s doing as well as can be expected. Thanks for asking.’ Or “Thanks for sharing that’ if they recommend a specific doctor or treatment.’” – Diana Denholm
Stand your ground for safety
“Don’t compromise when it comes to safety. My husband and I used to take a walk every evening in our neighborhood. But as his Parkinson’s got worse, he’d take these launching falls. He’d fall on his face, he’d be covered in blood, and I’d have to flag down cars to help me bring him back to the house. I finally said it was too stressful for me: he could either bring a walker or our assistant nurse along. Well, he didn’t like those options. So the walks stopped. It was a hard choice, but I had to do it to take care of myself.” – Diana Denholm
Keep in mind what your parent would want
“If you have siblings, sometimes you will disagree about your parent’s care. To avoid conflict and hard feelings, have regular conversations and allow every person a chance to speak. When there’s disagreement, talk about what your parent would want. Work to reach decisions by consensus, rather than by voting, so no one feels like they lost.” – Rick Lauber
“Embrace the technology that’s available. You can install highly technical monitoring systems that include video monitors or motion sensors that can detect things like whether the medicine cabinet is opened at 9 a.m. each morning. There are also a lot of wearable devices to monitor different health conditions.” – Elinor Ginzler. Every adult should know these early signs of Alzheimer’s.
Give specifics on why they can’t drive
“Do you have a family member who shouldn’t be driving? The best way to engage in that difficult conversation is to actually ride in the car with them, and then share real facts information about that experience: “Dad, I got scared when we got to that intersection because it took you an awfully long time to realize that stop sign was there.” Instead of focusing on their own safety, talk about the safety of the people around them. Research shows that’s more effective. You can say, “I know you don’t want to cause anybody harm.” – Elinor Ginzler
Follow your instincts
“No one knows your family member better than you do. Follow your instincts, and make sure the doctors listen to you. At one point, Mom was on so much medication I was worried that she might fall. She seemed off balance and she was talking funny, but the nurses said I was worrying unnecessarily. Three days later, she fell and broke her wrist.” – Michele DeSocio
Use the power of music
“Music is an important and powerful way to connect with someone who has Alzheimer’s or dementia. There are many studies that show how beneficial it can be, and people who can’t remember other things often remember all the words to songs they enjoyed earlier in life. Also, music has an emotional element to it, so it can elicit some of the good memories and positive feelings that the disease destroys.” – Peter V. Rabins
Pets bring out excitement
“Pets are another way to reach someone with dementia. We’ve had patients with advanced Alzheimer’s who haven’t spoken a meaningful word for a month. Then someone brings in a dog and they’ll get so excited they’ll say a whole sentence.” – Peter V. Rabins
Take a break during disagreements
“If someone with Alzheimer’s is getting angry or upset about something, the best thing you can do is take a break and try to get the person’s mind off of what’s upsetting them. Often, someone will get upset at same time every day, saying, ‘Where’s my mother? She was supposed to pick me up.’ Telling them their mother has been dead for years makes them more upset and grief-stricken because they become aware of the fact. So instead, share a memory of Mom. Or ask a question: “What’s the funniest thing you ever did with Mom?” – Peter V. Rabins
Treat it like a business
“If you’re the primary caregiver, you almost have to treat the situation like a business. You and the person you’re caring for should work together to develop a list of what you need and what you want when it comes to help. Then create a list of people who can help and what they can each do. Who can cook? Who can shop? Who can pay bills? If a family member, friend or neighbor asks how they can help, you know exactly what the needs are and what to ask for.” – Diana Denholm
It’s OK to be grossed out
“Unfortunately, one thing we don’t talk much about is that the person you’re caring for is probably going to be sick and smelly and dirty—they’re peeing, pooping, throwing up and you’re the one who has to clean it up. They may refuse to take care of themselves because they’re depressed, and that’s especially frustrating. Sometimes you’re going to think, ‘You’re disgusting—I can’t stand being around you for one more minute—and that’s OK.” – Diana Denholm
Ask them what they want
“Talk to your loved one about what he or she wants. Not doing that was one of the big mistakes we made when we cared for my mother-in-law. Because of that, we ended up moving her twice in a short time, and that caused a lot of stress and strain. The next time around, when we cared for my father, we involved him in all the decisions and it made a big difference. At first, he said he wanted to stay in his home so we accepted his decision and hired a live-in caregiver to help. Eventually, though, he kind of got lonely, and he’s the one who asked to move.” – Bart Astor
Clear your mind
“For me, yoga was essential. When you’re doing yoga, you have to clear your mind so you don’t have to think about what’s going on in your life. It reduced stress, kept me physically fit, and put me in an environment of friends.” – Diana Denholm
Sleep is important
“If your family member is keeping you up at night, try encouraging more physical exercise during the day. They can walk, march in place or do seated chair exercises. If that doesn’t work, talk to the doctor about possibly getting a sleep aide. Both of you will feel better if you’re getting enough sleep.” – Elinor Ginzler. Use these tips to avoid caregiver burnout.
“Look and see if there are things your loved one can still do for him or herself. One of the biggest mistakes caregivers make is enabling—they start to do everything for their loved one, even the things that person can still do for themselves.” – Diana Denholm
Bath in a bag
“Many people with dementia really resist getting undressed or getting bathed in water. In those cases, try a bath in a bag. It doesn’t have to be in the bathroom; do it where they are most relaxed, even sitting on a chair or couch. Fill a garbage bag and fill it with warm, wet towels. Some are just wet, others that have soap in them. Use them to wet, wash and then rinse one area of their body at a time, so they never have to be naked. Finish by wrapping them in warm fluffy towels.” – Elinor Ginzler
“Have a sense of humor. One time, my brother-in-law came to visit. He’s a good-looking boy, and my mother was actually flirting with him. I could have been upset but instead, I chose to laugh.” – Michele DeSocio
Be prepared for old family dynamics
“When a parent needs care, expect a return to the old family dynamics, whatever they were. Sibling rivalries will come roaring back. That’s partly because the thought of losing mom or dad evokes some very old and deep feelings. You will also be dealing more intimately as a family than you’ve probably done for the past 30 years. Try to remember that your siblings are adults now. Don’t assume that the youngest is the screw-up just because she was as a child. Remember, you grew up and so they did they.” – Francine Russo
Be creative with how you present outside help
“If someone resists caregiving, you may have to get creative. One man with dementia had an important job all his life, and his family thought he wouldn’t accept outside help. So we found a very professional-looking caregiver and told him we had hired him an ‘assistant.’ He was used to having “assistants” from his time in the business world, so it helped him to accept her.” – Jody Gastfriend, vice president of senior care at Care.com
Don’t let them know you’re paying for it
“In some cases, people don’t want to accept paid help because they don’t want to pay for it. One solution is to arrange for assistance, but don’t let your family member know you’re paying for it. You can say, ‘It’s great: the county offers these services for seniors, so this lady is going to come and help you out twice a week.’” – Elinor Ginzler. This is how you can use technology to care for aging parents.