(KUTV) Long-term caregiving often dictates a caregiver’s daily routine. However, making time for self-care is extremely important for those who are always taking care of others.
“It’s been a blessing to me to be his caregiver,” says Tina Persels. Adam’s mother and caregiver.
Adam is 18-years-old and a senior at East High School. He’s had over 30 surgeries and suffers from several condition including autism and cerebral palsy.
“When you’re caring for someone like Adam, they need assistance with everything,” says Tina.
From waking up and getting ready in the morning, to taking medication and eating – long-term caregiving determines a person’s day-to-day routine.
“I think a lot of those caregiving moments for Adam and I are some of our closest moments,” says Tina.
Tina admits that sometimes, it can be overwhelming and says sometimes she needs a break. Because of the constant pressure, many caregivers struggle with anxiety and depression and forget that they also need to care for themselves.
“Keep yourself in check. Make sure you’re going to your doctors’ appointments, talk to your doctor if you’re feeling that way. It can really help. It’s helped for me,” says Tina.
Caring for yourself also means making time for yourself and doing things you enjoy. For Tina, it’s a weekly date night with her husband.
“Generally every Friday night we have a person come and take care of Adam for a few hours,” says Tina.
They use that time for themselves. Sometimes it’s dinner or a movie but it also might be grocery shopping or running errands.
“It’s looking for different ways to do what they used to so, in a different setting,” says Jeff Fleming, Chaplin for the Rainbow Kids Palliative Care Team at Intermountain Primary Children’s Hospital.
If you’re caring for someone who recently received a diagnosis, it’s important to remember that long-term caregiving is a marathon, not a sprint.
“It’s not something you expected, and you feel alone. There’s that isolation piece that just, you don’t know what to do,” says Tina.
Jennifer Pannunzio, a Medical Social Worker at Intermountain Primary Children’s Hospital’s Cardiac ICU, describes it as a moment of absolute and complete shock.
“We tell families all the time that your wellbeing is first and foremost,” says Pannunzio.
Whether it’s asking for help or not feeling like you’re doing enough, caregivers often care a lot of guilt.
“The guilt that people get caught up in is this sense of, “I can’t do what I used to do,” and the truth is, you can’t, but you’re not bad for not being able to do that,” says Fleming.
It’s about rearranging expectations and finding a new normal that’s best for you and your family.
“There is no right or wrong. There’s doing the best that you can with the help that you have,” says Pannunzio.
The feeling of isolation and loneliness is very common for caregivers. However, there are a number of community resources that can help: