By ReShonda Tate
It’s a Monday morning in Murfreesboro, Tenn., and Shelly Taylor Page is rushing to get to her full-time job as a law professor at Southern Illinois University. But before she can get out the door, she must contend with her other full-time job as a caregiver to her elderly mother, who has dementia.
“I had to bring my mother from Houston to live with my husband and I here in Tennessee. And I’m not going to lie, it’s hard,” Page said. “I walk into her bedroom and she’s packed up everything. I have to find the toothbrush, the comb. I have to explain to her why she’s living in my house because in her mind, it’s 2006. She’s belligerent and wants to go home. Many mornings, I just burst out crying because I’m tired and I have to get to work.”
Page is grateful for the support of her husband, James, who works from 8 a.m. to noon, and helps out a lot. Support, she says, is crucial.
“The first two months was so hard. I’m yelling at my mom because I didn’t really get it. I struggle with my weight and she’d call me a fat, ugly b*tch and I would just break down. My husband steps in to remind me, ‘That’s not your mama saying that, it’s the disease.’ I didn’t get that. So it’s super important to have a serious support network, not just to help you physically, like if you need to run to H-E-B, but mentally,” Page said.
By the numbers
November is National Family Caregivers Month, and as the population ages, more caregiving is being provided by people who aren’t health care professionals. Page is one of 4.3 million Americans who have found themselves in such a role. According to AARP/National Alliance for Caregiving:
- African Americans often have more burdensome caregiving situations than their non-Hispanic white or Asian caregiver counterparts. They also tend to be younger, are often unmarried, have poorer health, and frequently have to balance caregiving with full-time jobs.
- More than half of African American caregivers find themselves “sandwiched” between caring for an older person and a younger person under age 18, or caring for more than one older person.
- African American caregivers are also more likely to reside with the care recipient and spend an average of 20.6 hours per week providing care.
- 66% of African American caregivers are employed full or part-time
An isolating experience
Many caregivers are hard pressed to keep together even a small team of immediate family members who are agreeable to contributing. When those few later disappear, the entire crushing weight lands on the primary caregiver’s shoulders.
According to the AARP/NAC study, over half of caregivers feel they have no choice. As onerous as that sounds, for African Americans, a “majority find a sense of purpose” in caregiving — more than among white caregivers.
That sense of purpose could be defined in religious terms (“doing God’s will”) or family terms (“giving back to someone who took good care of me”). Or it could be about doing right by the community that has done right by you.
The need for support has never been greater for African American caregivers, who are becoming older, are more likely to be isolated and to experience care-related strain. In the study, more than a fourth of African American caregivers’ report having no family, friends or neighbors to help them, which makes them solely responsible for all caregiving duties and increases their risk of care-related strain.
Other survey findings revealed that about a third of African American and Black caregivers report being more isolated, experience mental health strain and physical health strain due to caregiving.
Caregiving can be lonely and tiring and some seek support from outside sources when it gets to be overwhelming.
Page says the adult daycare that her mother attends has been a lifesaver.
Resources for caregivers
Caregiver burnout is a real thing and it’s not taken lightly by psychologists, who define it as a debilitating psychological condition brought about by unrelieved stress.
- Lack of energy
- Overwhelming fatigue
- Sleep problems (too much or too little)
- Changes in eating habits; weight loss or gain
- A feeling of hopelessness
- Withdrawing from, or losing interest in, activities you once enjoyed
- Neglecting your own physical and emotional needs
- Feeling like caregiving is controlling your life
- Becoming unusually impatient, irritable or argumentative with the person you’re caring for and/or with others
- Anxiety about the future
- Depression or mood swings
- Difficulty coping with everyday things
- Headaches, stomachaches, and other physical problems
- Lowered resistance to illness
- Accept help. Needing help doesn’t make you a bad caregiver. It simply means you can’t do it alone — no one can. Make a list of your daily activities and tasks. Delegate when you can.
- Take care of yourself. Don’t skip your own doctor’s appointments because you’re too busy. Make sure to tell your doctor that you’re a caregiver. Don’t hesitate to mention any concerns or symptoms you have.E xercise, eat well and get enough sleep. Get up 15 minutes earlier and use the time just for you. Sit with your coffee or tea and enjoy it. Journal about your struggles and feelings. Meditate, pray, stretch, etc.
- Focus on what you are able to provide. It’s normal to feel guilty sometimes, but understand that no one is a “perfect” caregiver. Believe that you are doing the best you can and making the best decisions you can at any given time.
- Set realistic goals. Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists and establish a daily routine. Begin to say no to requests that are draining, such as hosting holiday meals.
- Get connected. Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing. Caregiving services such as transportation, meal delivery or housekeeping may be available.
- Join a support group. A support group can provide validation and encouragement, as well as problem-solving strategies for difficult situations. People in support groups understand what you may be going through.
- Seek social support. Make an effort to stay well-connected with family and friends who can offer nonjudgmental emotional support. Set aside time each week for connecting, even if it’s just a walk with a friend.
- Check into family-leave benefits from your job. Take a huge weight off your shoulders by giving you more hours in your day.
- Consider respite care. It may be hard to imagine leaving your loved one in someone else’s care, but taking a break can be one of the best things you do for yourself — as well as the person you’re caring for. Most communities have some type of respite care available, such as in-home respite, adult care centers and programs and short-term nursing homes.
A Personal Story
By ReShonda Tate
It was Aug. 2016. I had just wrapped a wonderful booksigning for my latest novel in Southwest Houston. As usual, my vibrant, independent mother was in attendance. As the signing wrapped, she complained of a headache as said she was heading home.
Fifteen minutes later, a reader ran back inside and yelled, “I think something happened to your mother!”
I raced outside and found my mother passed out in the parking lot. Thank God she had on white because it was dark and a passer-by just happened to see the white clothing. My mother was rushed to the hospital where she was told those incessant headaches (for which she swallowed Aleve like candy) was actually a grapefruit-sized brain tumor and she would have to undergo surgery asap. After fighting my sister and I (she had a trip to Arkansas the next day that she didn’t want to cancel), she was taken into surgery.
Those were the longest hours of our lives. Fourteen hours later, we got word that my mother had suffered a stroke during surgery. Her skull had to be removed and her prognosis was bleak. She couldn’t talk or walk. But seven surgeries and six hospitals later, my mother was released home.
That’s where our lives changed forever. My sister, Tanisha Tate, became her primary caregiver, moving into our mother’s home. To date, she remains her primary caregiver, with assistance from me, my mother’s longtime boyfriend, Phil, and a few family members.
When I have my mom, it’s hard. She’s in a wheelchair. She has aphasia, which is the loss of ability to understand or express speech, caused by brain damage. She’s still feisty and knows what she wants, but because she can’t talk or walk, she will always need a caregiver. I know that if it’s hard for me, it’s 10 times tougher for my sister, who is there every single day.
My sister is an inspiration to other caregivers though. She has found a way not to lose herself in caring for our mother.
“I had to find a way to have my own life,” Tanisha said. “I schedule time for self-care. I get massages regularly. Get my hair done. I’m active with my sorority. I enlist the help of family members and go places with my friend. It’s important that you don’t feel guilty about taking care of yourself.”
She’s even started a blog – https://whocaresforthecaregiver.net to help others.
I often find myself feeling sad because my mother was such a fierce and independent woman and now requires constant care. But instead, I have chosen to focus on the positive. That despite what doctors said, God had the final say – and she’s still here and he’s given us – especially my sister, the strength to care for her.