Ask for help, take time for yourself: caregivers share survival tips
June 02--Robin Schroeder
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.
How did your life change when you became a caregiver? 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.
What were your biggest challenges? 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?
What do you wish you had? 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.
How did your life change when you became Betty's caregiver? 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.
What were your biggest challenges? 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.
Did you have survival techniques? 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.
What helped you balance your duties? 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.
Were there helpful resources? 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.
Describe the level of help you provide to your mother: My mother can mostly take care of herself. She sometimes has difficulty pulling her thoughts together, because of the stroke. But she can remember to take her meds, she pays her own bills. Every seven weeks I take a half-day off work and take her to get an IV treatment for her rheumatoid arthritis. I check in with her daily to see what's going on and once or twice a week I take her grocery shopping.
Have you faced challenges? My mom is competent. I don't bathe her, I don't clean her house, but I am her advocate in health care and services. That's my role now. I'm her only child. All the burden falls on me. At the same time, recently she talked about wanting to get a walker. So we went to the doctor for an evaluation and got a walker. It sits in the corner and she doesn't use it -- but it's there if she wants it. It was nice that even though the roles are reversed, I don't always have to be the bad guy in telling her what she should and shouldn't do. She's able to make some of those decisions and let me know.
What helps you balance your duties? A flexible workplace. I don't know why more aren't. My bosses know what I do, and I don't feel stressed when I say I've got to do something for my mom. I'm lucky that I work for an organization that realizes we're not just workers, we have lives. I give as much to my job as I give to my life.
What do you wish you had? More time and more money. Time not for my mother, but for me. You can't fill somebody's cup if yours is empty. If I could have more time to do things I need to do, then it would be better for her in the long run.
Survival techniques: Learn to ask for help. If my husband's out and about, I'll ask him to go pick up my mother. My adult daughters are starting to realize they need to step up and do adult things. Also, my mom and I have had frank talks about what to do if she can no longer take care of herself. We've talked about finances and end-of-life. What I've learned in my work is that families will talk about what kind of coffin they want or the music they want played at their funerals. Nobody talks to their parents or relatives about the middle, when they start to lose their independence. The middle is what overwhelms us.
Helpful resources: I use the Senior LinkAge line myself and for my clients. In St. Paul there's a great neighborhood block nurse program, a nonprofit that uses volunteers and professionals to help older people stay in their homes. For some people it can be as simple as having someone come vacuum your home that can make all the difference.
Larry Gnatzig's life took a hard turn when his partner of more than two decades, Jeff Tucker, became suddenly withdrawn and uncommunicative. In the fall of 2015, Tucker, then 59, was diagnosed with frontotemporal dementia, sometimes described as early onset dementia. Although Tucker can be left alone, he doesn't drive or use the stove to cook.
How did your life change when you became Jeff's caregiver? I turned from a regular, pretty low-key guy going about my business into an advocate. At the time of Jeff's diagnosis, we were denied disability support from the county because he was too young to qualify for older adult services and because they determined he wasn't disabled enough to need nursing home-level care. No one had training to understand the needs of people with dementia. I became Jeff's voice. I pushed at the county and state level until someone listened. Because of my advocacy, there have been systemic changes in the screening process and how outreach workers are trained, including sensitivities to the needs of LGBT couples.
What are some of your biggest challenges? Feeling overwhelmed and isolated. People all the time ask how Jeff is. Sometimes I wish someone would say, "How's Larry?" When you get a diagnosis like this, friends and family can disappear because they are afraid. People don't realize that the entire family is affected.
What helps you balance your duties? Asking for help and accepting it when it's given. I have a good manager at work who gives me the flexibility I need. And I have a cousin who just sort of takes Jeff off whenever we have family get-togethers. Jeff likes and trusts him. That gives me a break.
What do you wish you had? I'm now the sole breadwinner and I take unpaid FMLA when I need to. That affects us financially. Sometimes I wish I could just be in my home all by myself for a little while. I know Jeff would go to a facility for a weekend if I asked him, but that would be too disruptive and I won't do it.
What are your survival techniques? I'm fortunate that I can take trips by myself for respite. I just got back from Australia. And I rely on my faith and family, especially spending time with my two daughters and my grandchildren. Every now and then on the way home from work, I stop at a park and have a smoke and sit in the quiet because sometimes I just don't want to go home. It's too ugly.
Helpful resources: The Alzheimer's Association has been a godsend. I started taking classes as soon as Jeff was diagnosed. And last year I started attending a group for people with frontotemporal dementia. This is such a different animal than Alzheimer's, and people don't always understand that. It's amazingly helpful to talk to other people who get it.
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