‘I can’t run away from it’ | Caregivers, Part Two in a Series

CEDAR RAPIDS - More than half a century ago, Ken and Sharon Thimmesch, now each 75 years old, made the vow to always be there for each other, no matter what the situation.

In 2013, almost 15 years after her diagnosis with Parkinson's disease, Sharon's health deteriorated - her sense of balance has diminished to the point that she is unable to stand on her own - and Ken found himself thrust into the unfamiliar role of caregiver for his wife.

For the past two years, day in and day out, Ken has become Sharon's primary caretaker. He lifts her out of bed in the morning, helps her to the bathroom and manages her regimen of medications - Sharon takes prescriptions four times a day.

The latest addition, a big blue pill, was added after she was recently diagnosed with shingles.

'It's not easy, but I know she would do the same for me if it were reversed,” Ken said, tears coming to his eyes as he sat in the living room of the couple's Cedar Rapids home - Sharon's hospital bed a short 10 feet away.

'Fate had just put us in the situation we're in and I can't run away from it. Fifty-one years ago I said, ‘In sickness and in health, till death do us part.' ”

With the help of area medical centers, support groups and educational materials, the growing number of Iowans such as Ken have options to ease the strain of becoming a caretaker.

Learning to be a caregiver

According to a 2015 report on caregiving in America from the National Alliance for Caregiving and AARP, 84 percent of caregivers state that they could use more information on caregiving topics, with 42 percent wanting information about keeping their loved ones at home and managing their own stress.

In Iowa, 65 percent of caregivers provide medical care, nearly 20 percent higher than the national average. Of those caregivers, 48 percent say they received a demonstration for medical tasks they need to perform.

'We need to adequately equip people,” said Anthony Carroll, associate state director for advocacy with AARP Iowa.

'We can do this, we can make sure people have this baseline understanding.”

Margie Pence, director of Mercy Medical Center Home Care in Cedar Rapids, noted that as the baby boomer generation ages, the number of caregivers lacking in formal medical training also is on the rise.

'Lots of families never dreamed that they might be assisting or providing this type of hands-on care for a loved one,” Pence said.

Properly lifting someone, managing medications or even dressing wounds are all chores caregivers might find themselves performing, with the large majority of individuals in need of training to perform such tasks.

Pence said one of the best ways for a caregiver to learn is by watching and seeking guidance from a professional.

'It goes best if they have a care partner that has been working with them in the hospital and then transitions with them to home,” Pence said.

Care for the caregiver

Renee Grummer-Miller, palliative care social worker with UnityPoint Health-St. Luke's Hospital in Cedar Rapids, said the patient's care is the obvious focus for a caregiver. But she added that the caregiver's own well-being often is overlooked.

'They have a lot on their plate and they often neglect themselves, (and) sometimes the caregiver develops illness because of the stresses,” she said.

Participating in support groups, finding ways to reduce stress, making sure they get enough sleep and proper nutrition are all ways for caregivers to maintain their health.

UnityPoint Health provides a number of support groups for caregivers facing a range of situations, from Parkinson's disease to Alzheimer's.

Grummer-Miller said simply meeting other caregivers who are going through similar situations can make a huge difference.

'Nobody really understands what it's like to be a caregiver unless you're going through the same thing,” she said.

UnityPoint also provides daylong retreats twice a year for caregivers to enjoy chair massages, keynote speakers and musical therapy, all in the name of stress reduction. Funding is being explored to add more retreats, Grummer-Miller said.

'In 100 percent of the cases, we have found that their stress level is reduced after being a part of that retreat,” she said.

With his wife needing 24/7 care, Ken Thimmesch said one of the most difficult issues he faces is finding time to run an errand or simply go out.

'We're both prisoners in our own home. You don't know what that's like until it happens to you,” he said.

'There's a lot of times I want to do something like run out to Menards or go to Kohl's, but then I realize, it's just not fair for me to run away, leaving her by herself.”

Grummer-Miller said it's common for caregivers to feel guilty about the stress or feelings of isolation that can mount when spending most, if not all, of their time caring for a relative.

However, caregivers can find professional nurses to visit on occasion or take advantage of adult day health centers to allow the primary caregiver some time for themselves.

For Sharon, life with Parkinson's disease has been difficult, but as she glanced over to her husband, she noted just how fortunate she is to have him by her side.

'I couldn't have been any more lucky to have somebody that cared this much about me,” she said.

'He's there with me every step of the way.”

Resources for caregivers

' Elderly Waiver Program: A program through the Iowa Department of Human Services that helps pay for home-delivered meals, adult day care, transportation and other services, (515) 725-3333

' Powerful Tools for Caregivers, a series of courses offered through the Iowa State University Extension. Contact Donna Donald at (641) 446-4723

' Iowa Department on Aging, (515) 725-3308

' Heritage Area Agency on Aging, (319) 398-5559

Chelsea Keenan contributed to this story.