Caring for a loved one with a chronic illness can take a toll, and many caregivers put their own needs aside.
“Caregivers get so busy that they don’t realize some of the things they are experiencing are signs of stress. When we talk with caregivers, we talk to them about these things being like warning lights on the dashboard of your car. They are an indication that you need to stop and notice them,” Ruth Drew, director of information and support services at the Alzheimer’s Association, told Healthline.
Signs that a caregiver may be stressed include the following.
1. Denial that behavior from the person they are caring for is due to their condition
“It’s hard to recognize that the changes you see in a person you care about are losses from the disease. It’s much easier to say they are just giving you a hard time today,” said Drew.
2. Flashes of emotions, such as anger, sadness, and moodiness
“The caregiver might feel out of sorts or that their reaction [to something] is bigger than it typically would be,” said Drew.
3. Social withdrawal
Leslie Peters, former vice chair of the Parkinson’s Foundation People with Parkinson’s Advisory Council, says caregivers will often isolate themselves if they are overwhelmed.
“If a caregiver stops communicating, that could be a major sign of burnout,” she said.
4. Anxiety and depression
Feeling worried about facing the day or what the future will bring, or feeling like everything is difficult, even things that used to be enjoyable, can be a sign of caregiver stress, says Drew.
When stressed, caregivers may notice changes in their sleeping patterns.
“Some find they sleep more and others suffer from insomnia as all the concerns and what ifs and things they have to do play in a loop in their head,” Drew said.
6. Health issues manifest
Stress can manifest in physical and psychological ways.
“We see caregivers wind up in the hospital or behavioral health units because they have broken down due to stress,” said Drew.
Ways to reduce caregiver stress
Peters has been a caregiver for nearly 20 years. Before her husband was diagnosed with Parkinson’s disease in his 30s, he and Peters cared for his mother, who had the same condition. She says the following helps her when she’s overwhelmed.
1. Take one day at a time
Rather than looking ahead and anticipating what the disease may do, Peters says focus on what you need to do today.
“Sometimes looking at the whole picture can be overwhelming,” she said. “Take it one day at a time.”
2. Make time for yourself
In addition to eating healthy and exercising, Peters suggests making time to do something you enjoy.
“Reading helps me get lost in someone else’s story for a while,” said Peters.
3. Learn stress management techniques
Drew says finding ways to reduce stress is important.
“For some it might be learning deep breathing and short meditation techniques, and for others it might be seeing a counselor or going to a support group,” she said.
4. Find support
Finding a support group with younger people affected by Parkinson’s disease through the Parkinson’s Foundation was a big help for Peters and her husband.
“Talking to people who are going through the same thing you are going through and knowing you’re not alone makes a huge difference,” she said. “Now, we lead a support group and do a lot of community outreach to give back.”
5. Ask for help
According to a recent survey from the Alzheimer’s Association, 91 percent of caregivers say caring for someone with Alzheimer’s or another form of dementia should be a group effort among family and close friends. However, only 1 in 3 caregivers said they engage others in caregiving tasks.
“Organizing friends and family and having a support network [who can help] or asking someone to organize [friends and family to help out] is a good idea,” said Drew.
Ways to help a caregiver
While many people want to help make life easier for a caregiver, Drew says many don’t know what to do or say.
“They’ll say things like, ‘If you need anything, just call me,’ but most of the time caregivers don’t call. No one wants to be the one asking for help; we all want to be the one offering to help, and it feels like effort to figure out what other people can do to help,” said Drew.
She says be specific with ways to help. For example, tell the caregiver you’re going grocery shopping on Friday and ask them to send you their grocery list or tell them you have a few hours on Saturday and offer to do their laundry or mow the lawn.
“Don’t get discouraged if they don’t say yes the first time. It will get them thinking about what someone else can do for them,” Drew said.
Other ways you can help include the following.
Peters says having someone to talk to is priceless, even if it’s not in person.
“Everyone needs a distraction from their everyday life, and being a caregiver can be very isolating because everyone is so focused on how the patient is doing that it’s easy to overlook the caregiver,” said Peters.
2. Stay in touch
When life gets hectic, Peters says it can be easy to lose touch with family and friends.
“A lot of times it’s not that they don’t care, it’s just that they don’t know what to say and how to help,” she said. “[Making an effort to] stay connected means a lot.”
3. Learn about the disease
Educating yourself on the disease the caregiver is around daily and about caregiving in general can be a huge help to the caregiver, says Drew.
“The more you understand the disease and the caregiving involved, the better you will be at finding ways to help,” said Drew.
4. Give your time
When Peter’s husband was diagnosed, their kids were in high school and elementary school. While her children didn’t need childcare, she says when people spent time with them outside of the house, it was helpful for everyone.
“Kids can use a distraction from seeing the day-to-day struggles at home,” she said.
Offering your time to do chores or hang out with the person who needs caretaking so the caregiver can get away for a few hours is another thoughtful gesture, says Drew.
“The time can be very meaningful for friends and family and it’s also an enormous gift to the caregiver because it allows them to stay whole themselves and [in turn] be able to keep doing the meaningful but difficult [job of caregiving] better and longer,” she said.
5. Create a care team calendar
Because delegating tasks to others can be overwhelming, Drew recommends offering to organize a help calendar.
“We have a tool on our website to create a calendar and you can give access to people in your circle. For example, if you need someone to mow the lawn, take someone to a doctor appointment, or bring meals, you can create those tasks on the calendar for people to sign up for,” she said.
6. Gift a gift card
If you want to give a tangible gift, both Peters and Drew say gift cards for self-care services and entertainment, such as for a massage, restaurant, or movie theatre, go a long way, as do gift certificates for more practical services like lawn care and house cleaning.
“Ask the caregiver questions about what’s hard to get done and what’s going well so you can get an idea,” said Drew. “When I’ve been in caregiving situations, I’ve never turned away a meal or offer of help when it came from someone who I knew was caring and offering in a sincere and specific way,” she said.
7. Support research
Donating to an organization or foundation that conducts research, spreads awareness, or offers support to those living with a disease and their loved ones might be the best gift you can offer, says Peters.
“In making lives better for those with the disease, you can help the caregiver in the long run,” she said.
Originally published on Healthline.
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