We All Need Support Sometimes: Caregivers Share Tips for Caregetting

As a caregiver, it can be easy to fall into the trap of feeling like you need to do it all. After all, your loved one is looking to you to help them manage a chronic disease and, depending on the severity of your loved one’s health challenges, their care may involve significant time and activity. Caregivers may become completely focused on being caregivers, and rarely or never on being caregetters.

Finding and accepting support can be difficult. You may feel uncomfortable trusting another person to be responsible for your loved one’s care, feel obligated or expected to be available 24/7, or simply be used to being the go-to person. But help can take some of the weight off your shoulders, give you some time to refresh your mental, emotional and physical reserves, and ultimately enhance your relationships with both yourself and your loved one.

We spoke to caregivers in a variety of situations to hear their thoughts on finding caregiving support. Here is what we learned:

People want to help, but they might not know how

Cynthia shares, “I learned about a website called www.lotsahelpinghands.com. It’s a calendar where people can sign up to provide help for patients and caregivers dealing with a chronic illness. Since my partner was diagnosed, a lot of people have asked what they can do to help. I ask them to sign up on the site. It allows me to have options for different types of help, but I can choose from people I know.” If you don’t have Internet access, you can make a list of tasks that would be helpful and ask a friend or relative to coordinate volunteers.

Accept help — from your loved one

Remember that before PH, your loved one was probably used to giving as well as receiving support. The loss of this role can be difficult for patients — and sometimes unnecessary. One patient told us, “Sometimes I think my wife believes PH has affected my brain … actually, my brain is the healthiest part of me now, and I really want to be asked to use it.” While you may not be comfortable talking to your loved one about the frustrations you may feel about your role as a caregiver, don’t forget that they still want to be there for you in any capacity they are able to.

Additionally, it’s important that your loved one be prepared if the unexpected happens. “I have created a complete step-by-step direction pamphlet that I leave in my husband’s medication supply kit. He also has a card in his wallet that lists all his medications in case he is ever alone and has an emergency and needs help from the EMTs,” Diane told us. “I can give him the gift of caregiving, but I also want him to be able to take care of himself.”

Make a space for yourself

“I’ve been seeing a therapist since my partner got diagnosed, to help me cope with our ‘new normal,’” says Cynthia. “I feel that talking to a therapist is a way of standing up for myself. It helps me to cope with my partner’s expectations and to work on also taking care of myself.”

The small stuff counts

Sometimes, just having someone acknowledge your efforts as a caregiver can help. “Personally, I love it when someone comes in the house and just asks me how I am,” says Diane. Nancy agrees, “It means the world to me to have someone actually ask me ‘how are you doing?’ To know that someone is concerned for you is huge.” You can reinforce this by thanking the people who take the time to ask how you are. If you’re feeling forgotten, call a friend or family member who you’re close to and let them know that you need someone to lean on or talk to for half an hour from time to time. Don’t be ashamed to ask for support.

Prioritize

“Rethink your family budget in terms of how much you ‘spend’ when doing chores. If your time is more valuable (per hour) than what you’d pay someone to clean your house, grocery shop, do yardwork or other chores, try to find room in your monthly budget to pay them and free up your time for things you cannot pay someone else to do,” suggested a male caregiver who participated in PHA’s Family and Friends survey.

Joe, another male caregiver, adds, “We now pay two ladies who clean our house, but they are the only people who I pay. It’s also good therapy for my wife to talk to them, and they have become another support system.”

If needed, provide training

Look for others who can help you with medical tasks such as mixing medications. “I would like to know if there could be training for in-home care. It’s very scary to know that I am the only one who knows how to handle my mom’s condition,” says Nancy. Many specialty pharmacies will send a nurse out to train caregivers at home; if you have friends or family willing to help you with your loved one’s medication, see if you can schedule a “training date” for them. Similarly, if you have a local support group, see if a specialty pharmacy nurse can run a training session for the group and bring your “caregiver volunteers” to the session so they can learn with you.

Reach out if you don’t have local support. Cynthia told us, “Initially, the isolation, I think, was the hardest thing. Then my partner and I found a support group in the Boston area.” Cynthia advises, “Keep your social connections open; just because someone in your life has a chronic illness doesn’t mean you have to close off your social life.”

Long-distance support counts, too

“My out-of-town family sends me gift cards to restaurants to help me with meals,” says Joe. “Other members of my family bought Dream Dinners services for me. You order your meals and they send them to you with an instruction card. When the meals arrived, my family got together like a party and put the meals together.”

The benefits of caregiving support are as many and varied as the types of support. Getting help with something as basic as household chores can contribute to your emotional well-being and sense of communal support. “I’m lucky because my family volunteered; their help freed up my time to do other things,” shares Joe. “It gave me time to go fishing and take time for myself. Because of them, I never feel alone or like I’m stuck.”

Special thanks to each caregiver who contributed to this story. Thanks as well to Allyson Rupp, LCSW, of the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford Hospital and Clinics, for input on support opportunities.

This article first appeared in Pathlight Summer 2012.