As an only child, Aline Roberts, 57, always knew the role of caregiver for her parents would eventually fall to her. Then when her father was hospitalized after a fall a few days before Christmas 2013, it did. Shortly thereafter she took the lead in moving her parents, both 85, out of their home of 40-plus years into an assisted living facility.
“We spoke on the phone daily, often two or three times,” she recalls. She was also regularly on calls with her parents’ healthcare providers, insurance company, and caregivers at the assisted living facility. She made the 10-hour roundtrip drive from her home in Dothan, Alabama, to New Orleans at least once a month, if not twice, to check on them in person.
“That first Christmas where I basically ‘got stuck’ in New Orleans away from my husband was the first time I felt some resentment, but I knew I was where I needed to be,” Roberts says. Then as her mom’s health worsened, “my mother expected me to drop what I was doing and go to see her and I did resent that,” she says. “It was a thankless role.”
After Roberts’ mother passed away in 2014, her caregiving duties to her father intensified. “I would cringe when the phone rang and I saw the 504 area code,” she says. “My first thought was usually, ‘Oh Lord, what's the crisis du jour?’ and then I would feel guilty for thinking that.”
When Roberts’ father unexpectedly passed she was hit with a profound feeling of loss. “I realized I didn't fully grieve for my mother while taking care of my father, so it was a double-whammy of emotion.” As the initial feelings of loss eventually subsided, she realized that not only was she dealing with her grief, but she now had a lot of free time to fill. “Prior to my parents’ illnesses, I had joined a couple of groups but was unable to commit my time fully due to the uncertainty of their needs,” she says. To fill up the added hours she started going back to church regularly, became involved in a women’s political group, took a sewing class and joined a Bible study. For the holidays, she spent time with extended family and took a vacation to the beach with her husband. “I have come to realize how short and precious life is--and I want to appreciate every second.”
According to Gary Bradt, PsyD, and Scott Silknitter, co-authors of Put Your Mask on First: the Caregiver's’ Guide to Self-Care, Roberts did everything right. “Being a caregiver is such a long and winding road with turns that no one expects,” Silknitter says. “Caregiving is a never-ending test of your strength, until one day it stops and the feeling of ‘what do I do now?’ mixed with sadness begins.” It can be overwhelming if you let it, but having a support system and process in place will help you move on. Here are ways to grieve and pick back up with your life.
1. Seek Out Support - A bereavement support group, often offered through churches, synagogues, and community centers, can be very helpful. “Participating in a group lets you know that you’re not alone and can reassure you that the thoughts and feelings you have aren’t crazy, as people are sometimes wont to fear,” says Dr. Bradt. It’s also normal not to want to open up in person, says Silknitter. “Many caregivers have felt so isolated for so long that it can be challenging finding the right group or being comfortable sharing your feelings,” he says. In that instance, online support groups or forums, such as on the Family Caregiver Alliance, Caregiver Action Network or the Alzheimer's Association can be helpful.
2. Know that Guilt is Normal - Caregivers commonly feel guilt: guilt that you may have been angry at your loved one for getting sick in the first place; guilt that you didn’t do enough; and guilt that you couldn’t save them. “No matter how much you did for your loved one, it may feel like it was never enough,” says Dr. Bradt. “Recognize that guilt is a common feeling for caregivers and be gentle with yourself.
It is also normal to feel relief when your loved one dies, both because they are no longer suffering and because you no longer have to carry the responsibility of their care. It’s common for caregivers to feel sadness and grief on the one hand, and relief on the other. “Try to accept your feelings for what they are—common human reactions to difficult life circumstances," says Dr. Bradt.
3. Take Care of Yourself - When you’re caregiving, it’s all too easy to let your own needs fall to the wayside. In fact 72 percent of caregivers say they don’t go to the doctor regularly and 55 percent say they skip doctor’s appointments all together, according to a study by the National Alliance for Caregiving and Evercare. Make that dentist appointment that has been on your to-do list for months, get your haircut, and, while you’re at it, do something a little extravagant for yourself like getting a massage or buying a new handbag. “You have earned the right to be happy and enjoy yourself,” says Silknitter.
4. Welcome the Extra Time - “Now that your loved one is gone, you may notice the days seem to be dragging on and wonder, ‘what am I going to do now?’” says Silknitter. Though it may be challenging, especially at first, you have to figure out how to start enjoying your life again. Family, friends, and faith organizations are where most people start to reconnect with the world. “Each of us has to walk a path that we are comfortable with to meet the world again. The difference now is that instead of caring for your loved one, sticking up for them, and protecting them, you are doing it for you,” he says.
5. Reach Out to Friends - Don’t feel guilty or awkward about calling or emailing friends you may have neglected while caring for your loved one. “True friends and loved ones will understand,” says Dr. Bradt. In fact, many may have wanted to help you more than you let them while you were caregiving. Take them up on that offer to go out to dinner or lend a helping hand with household chores.
6. Enjoy Quality Time with Your Spouse - If your spouse was forced to take a back burner while your sick parent was your primary focus, try to set aside some time to do something together to start the healing process. “A short trip away, even a simple overnight at a local hotel, can be a strong first step toward reconnecting,” says Silknitter.
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