Ask For Help, Take Time For Yourself: Caregivers Share Survival Tips

By Jackie Crosby Star Tribune (Minneapolis)

WWR Article Summary (tl;dr) Several individuals share their experiences and challenges of becoming caregivers. They all share their best advice for keeping healthy while you care for loved ones.

Roseville

Robin Schroeder loved her job as chief financial officer for the dairy company her great-grandfather founded in 1884.

But when her parents' health began to deteriorate almost simultaneously about a decade ago, Schroeder found it impossible to manage the demands of a multimillion dollar business, a staff of 300 and aging parents.

In 2010 she left Schroeder Dairy and became a consultant. Her mother, Lorraine, had Alzheimer's disease for 18 years; her father, Bill, had hereditary spastic paraplegia, a rare condition that affected the strength in his legs and arms, and meant he needed a wheelchair and other lifting equipment.

Schroeder moved a few doors down from her parents in Roseville with her husband and daughters, 22 and 25. Her parents died in 2017, about eight months apart.

Question: How did your life change when you became a caregiver?

A: Everything I did, I had to consider my parents. Even though I hired staff from Home Instead, I was connected all the time because so much was unpredictable. If I was traveling for work or wanted to go to my daughter's graduation in Fargo, no matter what I did, I had to think about my parents first. Before I started taking care of them, they were my resource, and then I became their resource. When I went to visit my sister in Texas after she got married, I had to train my other sister and brother what to do here. I was on the phone half the time I was in Texas because they weren't the main people, and they didn't know what to do. So I might not be there physically full time, but I was always there.

Question: What were your biggest challenges?

A: That the situation kept changing. The care level my dad or mom needed was fine this week and all of a sudden, my dad couldn't transfer. We didn't want to put him in a nursing home, so I had to figure out, how many more additional people do I need to hire? Managing all the different helpers, trying to figure out the training, there were a lot of moving parts. It's not like you set it up and you're done. There's always something else happening, and it's things I'd never dealt with before. It really came down to me figuring out what resources I needed. That was a challenge. Then my dad starting going mentally, and Mom had dementia, so now there's the challenge of how do I communicate with them and comfort them?

Question: What do you wish you had?

A: It would have been nice to have another one of me -- who was as involved as I was, who knew all the intimate details so they didn't have to call me to figure out how to handle something, and no turnover. What happened was that the doctor would know this piece, the Home Instead caregiver would know this piece, the hospital, the neurologist would know this other thing. There really isn't anybody who knows it all. So wherever you're going, you're constantly telling the rest of the story: No, you can't do that to Dad because his legs don't bend. No, my mom doesn't like dairy, so don't give it to her.

Survival techniques: My women friends were particularly helpful because a number of them had parents who were aging or failing or who had died. I couldn't have done it without my husband. You had to be able to say things out loud. I love my parents, and I'd do it again. There were times it was overwhelming. I had to be able to cry or talk it out. I also have a strong faith. Being able to pray and meditate was important. And going to yoga. I had to absolutely make time to work out. Because if I didn't stay physically, spiritually and mentally strong, I wasn't going to be any good to my parents.

Helpful resources: Of all the institutions I dealt with, the funeral home people were the most helpful. They called Social Security, handled getting the death certificate from Ramsey County, worked with the VA to get benefits after my dad died. They were super organized.

Eileen Adams was something of an accidental caregiver. For years, she worked as a once-a-month housekeeper for Betty Agee, a widow who never had children. As Agee became more frail in her late 80s, Adams grew to be her main caregiver and trusted friend, playing a pivotal role within an informal network of friends and neighbors who helped Agee continue living in her two-bedroom house in southwest Minneapolis. When it became clear that Agee that could no longer live alone, Adams moved Agee into her own home for about five months, even though she was already caring for a husband with advanced Parkinson's. Agee moved into a memory care facility in October 2017, the day after turning 90.

Question: How did your life change when you became Betty's caregiver?

A: I found out I could do a lot more than I thought I could. I took care of my mom when she was sick, but that was different. With Betty I could do anything for her and it didn't bother me. You learn a lot of things that change you when someone is so dependent on you and trusts you so much.

Question: What were your biggest challenges?

A: Betty was lonely, and sometimes would say, "Can't I just pay you to sit and talk?" I tried to get her to go to adult day care, but she had no interest. "No, I'll sit and read a book, I'll be fine," she said. And when the dementia started, the repeating was hard. You hear the same thing over and over, and it's tough. She wasn't ever one for the phone, but she forgot how to use everything. It's very sad. One day I'm her mom, the next I'm her friend, and sometimes she doesn't remember my name.

Question: Did you have survival techniques?

A: I tried to keep her to a schedule. It got to where she'd want to sleep a lot during the day, and that would throw things off. I had to make sure she got up to eat her lunch, so I made that a priority. If she slept too long, she wouldn't sleep at night.

Question: What helped you balance your duties?

A: I usually went over to Betty's in the mornings to clean house, make her a good breakfast and bathe her. I took Fridays off through the weekend so I could go to western Wisconsin where my husband and I have a camper. Other people came over and cooked breakfast for her and visited her on the weekend. For a while, one of Betty's friends moved in for the weekend.

Question: Were there helpful resources?

A: When Betty got out of rehab the last time, someone from the county came to her home to see how things were going. The state of Minnesota wants to help people stay in their homes because they don't want to have to kick in for nursing homes. At first she came once a month, and then she called to see how I was doing and how she could help. We tried Meals on Wheels, but Betty didn't like the food. She'd rather have my cooking.

Taffy Jones is a social worker with Hennepin County who helps older adults get services to stay in their homes. That knowledge has come in handy as her 72-year-old mother, Jewel, begins to need more help getting through the day. Jewel, a retired chemical dependency counselor, has long suffered with rheumatoid arthritis, but had a couple of strokes in quick succession about a decade ago. After a heart attack in 2015, Jewel moved into her own apartment in an Episcopal Homes complex in St. Paul, which also provides assisted living and nursing home care should she need it.

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