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Chinda Lucoski has been a caregiver for 40 years, since her daughter Alicia was a 1-year-old.
With her experience taking care of a child, now adult, on the autism spectrum, Lucoski now is involved with a group supporting people with developmental disabilities and their caregivers, which provides people a place to connect with others in their situation.
She said it is essential for caregivers to take care of their own needs, as well as those of others.
“You have to take care of yourself before you can take care of other people,” Lucoski said. “Be connected with other caregivers to talk to. Find a network for people dealing with similar disabilities.”
Caregivers must put up with a lot of emotions, she said, so they need support from others in similar situations to help prevent burnout.
“Learn about stress management, respite,” she said. “You have to get away from being a caregiver 24/7.”
Encouraging all caregivers, from unpaid family members to professionals hired in the home, to become familiar with what’s going on with the person(s) for whom they are caring, Lucoski suggested searching on a computer, making calls and looking for referrals for the right caregiver coalition for the condition. There often is a small local group or a statewide organization, she said.
“You need to know why the mood swings,” she said. “You have to understand the condition and then try to understand someone. You might have to walk slow, go to an appointment, be patient.”
For example, Lucoski said in the evenings a Parkinson’s patient might get down and moody. The caregiver will need to be proactive in order to manage the conditions.
Many times, the at-home caregiver might not know what is wrong with their loved one. One mother had ALS and the daughter/caregiver didn’t know and was daily facing frustration until she understood, Lucoski said.
When things are overwhelming “take a break, walk away, no confrontation,” Lucoski said.
“You have to learn, don’t talk too much. Don’t let it out on the patient, but vent to someone,” she said. “It’s very helpful so that you are not alone to find help, or [have someone] give you a break.”
She said she knows letting go and trusting someone else can be very difficult. It was a difficult lesson for her as a mother.
“Before, I refused to go anywhere,” Lucoski said. “Now I know it’s normal to trust someone, so I can recoup without feeling guilty. There are negative emotions that come with being a full-time caregiver.”
November is Family Caregiver Month said Chris Chaffin, communications director for the Alzheimer's Association’s New Mexico Chapter. With the Coronavirus epidemic, things have become even more difficult, he said.
“It’s all taking a different spin for care team members,” Chaffin said. “The challenges are many, and now we’re entering the holidays. Caregivers tend to neglect their own issues which increases mortality. The burden of caregiving is great.”