For some, the post-holiday blues are worse than for others.
In addition to the general stresses of finding the perfect gifts, struggling with holiday finances, cleaning the house for guests and family arguments, the holidays and the time after are especially difficult for those taking care of a loved one with a serious illness.
“Holidays are packed with emotions for most people, so when you add in the stresses of caregiving it can often be a tipping point,” said Jared Paventi, chief communications officer, Alzheimer’s Association, Central New York Chapter. “All of a sudden, a houseful of people on Christmas day becomes an empty house again. It’s like going from 60 to zero in a heartbeat. This is difficult for people who aren’t caregiving, so you can imagine what a caregiver feels.”
According to the National Family Caregiver Association (NFCA), more than 65 million people provide care for a chronically ill, disabled or aged family member or friend during any given year. These people spend an average of 20 hours per week providing care for their loved one. About two-thirds of caregivers are women, many married with children and full-time jobs. Of those in need of care, 78 percent have no other resources to rely on but their families and loved ones.
And the life of a caregiver is a difficult one, said Frieda Weeks, founder of Liverpool-based Hope for Heather, which seeks to raise awareness of ovarian cancer and support women undergoing treatment and their families.
“The caregiver is the one who gets ‘slammed,’” Weeks said. “For example, the husband of a breast or ovarian cancer patient suddenly becomes in charge of everything. He has to hold down his job, take care of his children and their activities, clean and cook. He has to take his wife to appointments and treatments. Then you have to add the unspoken stress that both husband and wife are going through, wondering, what will be the outcome of this illness? Will she survive? How will he handle her emotional needs like losing her hair, coping with fear of her mortality, and the emotions brought on by everything else? Who will help him? A serious illness can rip a family apart from stress and lead to drug addiction, alcoholism and depression.”
Fortunately, there are resources available to help those in need. In addition to local and online support groups, organizations like Hospice of CNY, which provides end-of-life care to terminal patients, step up to the plate to provide support.
“When a patient is admitted to the program a whole team of professionals get to work,” said Bill Pfohl, communications officer for Hospice. “There are doctors and nurses that focus on comfort care, pain and symptom management. Social workers, grief counselors and chaplains help the patient deal with their illness emotionally. Social workers also help patients and family find community resources that may help during this time.”
Hospice also has a corps of volunteers to provide support to the family of the patient.
“Our trained Hospice volunteers help with many things,” Pfohl said. “Our ‘Family Caregivers’ can make a light meal, help with the shopping or just sit with the patient while giving some respite to the primary caregiver and family. The entire team focuses on the patient and the primary caregiver offering help and support where they can.”
For many families, the post-holiday period also means they find themselves thrust into a caregiving role, as a visit with a parent or grandparent reveals a decline that had previously gone unnoticed.
“After the holidays, we see a lot of people calling because they only see a parent or grandparent once or twice a year and notice new behaviors or changes,” said Paventi of the Alzheimer’s Association. “We offer care consultations, where families and members of our staff meet to discuss what the next steps in caregiving will look like, problem solve and navigate challenges that caregivers face. Our education programs and support groups offer forums to share and learn and all are free of charge.”
Providing this kind of support is critical; people who care for a loved one with a serious illness or disability are susceptible to a host of physical and mental issues. The NFCA reports that 40 to 70 percent of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression. Eleven percent say that the stress of caregiving has caused their physical health to deteriorate, and studies have shown that it can take up to 10 years off a person’s life.
“Caregiving is not a role you train for,” Paventi said. “It’s one that is thrust upon spouses, children, and grandchildren. It can be overwhelming.”
The hardest part? There’s rarely any relief.
“At hospitals, nursing homes and other care facilities, the professional caregiving staff works in shifts,” Pfohl said. “If you are taking care of a seriously ill parent, spouse, sibling or child there are no second shifts coming in to relieve you. You’re it.”
It’s important, therefore, for friends and neighbors to make sure that the caregiver is cared for, as well.
“A little time for themselves can go a long way to rejuvenate a person’s spirit,” Pfohl said. If you are a family member or friend, offer to watch or sit with the patient while the caregiver gets some down time at a coffee shop or the library. If the caregiver can take an hour or two away from the patient, take them out to lunch. The distraction will be appreciated. Don’t be afraid to visit, call first and tell them you would like to stop by for a visit. Tell them you’ll bring the treat, baked goods, a cake, even a couple of cups of coffee or tea will be appreciated.”
Weeks said that, too often, people are reluctant to butt in for fear of doing something wrong.
“People tend to be afraid and not know what to say or do. They are afraid of doing the wrong thing, so they do nothing,” she said. “It’s better to show up and say, ‘I don’t know how to help, but I’m here,’ than to stay away.”
In addition to providing the caregiver with company, both Pfohl and Weeks suggested helping with day-to-day tasks like shoveling snow, making dinner or picking up groceries.
“Sometimes help comes in the way of the mundane,” Pfohl said. “It’s the little tasks in life that can overwhelm people and stress them out.”
One thing you shouldn’t do is put pressure on the caregiver, Weeks said, as it just adds to their load.
“The phrases ‘Call me if you need anything’ or ‘Call me back’ can be stressful,” she said. “Better: ‘You don’t have to call me back. I just wanted you to know we are thinking of you.’ Listening is one of the greatest gifts.”
Weeks has been on both sides of this equation, having cared for her daughter, Heather, while she battled colon cancer. The foundation was started in her name after she passed away in 2006 to carry on her goals; Heather was employed by the Ovarian Cancer Research Fund before her death.
“When our daughter was seriously ill with cancer, we were so touched by those who reached out to help us with meals, cards, a night out or just that call to tell us they were there for us,” Weeks said. “Just showing up and being a good friend is key. Remember — if you are afraid to talk to your friend who’s caregiving for a terminal patient, imagine what they are feeling.”
To find a support group to fit your needs, visit caregiver.com/regionalresources/states/NY/support/onandaga.htm or call the Onondaga County Department of Aging and Youth at 435-2362.
