Caregivers need support as well

Asking for help when you need it isn’t easy, especially when you’re a caregiver and others depend on you.

Talking about how she looked after her husband for 20 years during National Family Caregivers Month, Linda Sowers she said while caring for her husband, former county commissioner Byron Sowers, it was tough for her to ask for help, even when she really needed it.

Her husband had Parkinson's disease for 20 years before he died in 2021. In 2012, she said, his need for care became constant, around the clock. It was difficult for her because there was nowhere to turn, no support groups for care partners like her.

“I just had to learn all this stuff,” Sowers said, “kind of on my own as time progressed.”

Now that her husband is gone, she is still involved in the Parkinson’s Families of Northwest Kansas group that meets every Wednesday at the Movement Connection. Every month that has a fifth week, she said, she shares her experiences on Wednesday with other care partners in the group, hoping to give them a head start on the information she didn’t know when she started.

“Care partners definitely need to be able to take care of themselves,” she said, “and probably don't have family around. Now, if I had a situation arise, I can always rely on one of my kids.”

Someone you can call when you need help taking care of your spouse, she said can help in many ways, like hair appointments, grocery runs or doctor appointments.

“I think just my eyes were opened up as far as what is needed for care partners,” Sowers said, “because they need help and assistance.… There's just so much that is involved in being a care partner.”

One important thing she stressed was making your house handicap accessible. While the duties of a caregiver are plenty, she said making sure you’re not putting yourself on hold while you take care of others all the time.

With her husband, she said, the two eventually got to a point where they understood each other, and communication was important in getting to that point. She added that they continued to be social throughout his disease, going to sports games, church or just getting out to drive around town.

In the relationship of someone with Parkinson's and their care partner, she said, the two are on opposite ends of the disease.

“For him to understand what I was having to deal with,” she said, “and for me to understand what he was having to deal with, I mean that was important to be able to do.”

One important detail she talks about at the Movement Connection, she said, is both spouses understanding finances, so if your partner does get to the point where they are not able to handle those things anymore, you will understand what needs done.

“Caregiving feels like a full-time job,” said founder of the group, Elaine Ptacek, “According to survey, a care partner spends 46.7 hours per week caring for their loved one.”

Sowers said that by caring so much for Byron, she got used to being a care partner and now finds herself trying to help people in public who don’t know her, just because that’s what she was used to doing for so long.

The two talked about the supports groups available for caregivers outside of their group, including the Parkinson’s Foundation, which puts out magazines, and PMD Alliance which does webinars for caregivers.

To contact health-care professionals and wellness programs, she said, you can call the Parkinson’s Foundation hotline at (800) 473-4636.

To take an online care partner course, you can go to www.Parkinson.org/CarePartnerProgram.

To register for weekly virtual events, including exercise classes, go to www.Parkinson.org/PDHealth.

A website dedicated to care partners is at www.Parkinson.org/Caregivers.

For the meetings here or more information for caregivers from Sowers, she said, you can call her at (785) 443-2509 and attend the meetings every fifth week of the month.