A Heartfelt Conversation about Caregiving in Mankato

 

 

 

 

 

 

As part of our “Where do we go from here?” discussion series — about how neighbors are dealing with community gaps — we sat down with people from the Mankato area to discuss the ways families and individuals can be overwhelmed in meeting caregiving needs for loved ones. Jennifer Andrashko (pictured above) and Yurie Hong of Saint Peter helped us generate an invitation list — participants generally did not previously know each other. What follows is a small selection of the conversation. Some participants did not want their stories shared in print, or wanted to be referenced by first name only. There was discussion of talking together again in someone’s living room. One participant said the highly emotional conversation was a healing experience: “It felt good to share and listen to all of your stories — to be in a room with people and their stories and pain shared. It gives me strength.”

 

Introducing Some of the Participants

Jennifer: As a social worker, part of my role is understanding gaps. I worked for people who did not have insurance for five years, and directed a mental health program that served 28 counties in Minnesota and a few counties in Wisconsin. It was my job to understand how to help people get the things they needed, and also my job to troubleshoot when it was clear that those things didn’t exist.

Liza: I was a caregiver for my husband who died of cancer. It was five years ago. For the year that he was sick, I was his main caregiver. Then we spent six months in the hospital and he wouldn’t really let the nurses do things for him — only me. We have five children, so that was a juggling act.

Alena: My experience is in end-of-life care — for my dad, my grandpa, and my father-in-law. I also have done caregiving for my niece, after my sister died. She left behind five kids. Two of them went to my mom, who had a stroke a year later. So, my husband and I took in my niece when she was 15. I have also been a caregiver to my husband, who broke both legs in a snowmobile accident.

 

What difficulties have you experienced getting the caregiving you need for children, the elderly, people with disabilities, or physical or mental health issues?

Liza: So much of caregiving is advocating. Much of my time with my husband was spent fighting insurance companies and fighting doctors. One of the reasons I’d never want to work as a nurse again is because I had such a traumatic experience in that year of him being sick. I don’t even want to be part of that world again. It’s just so much advocating for care — and we had privilege.

I wish I could have been his wife and a mother, and not always the advocate. I had to be in fight mode, and I didn’t want to be in fight mode. I wanted to love him and spend the time together.

It was during COVID, so for a while I was fighting to even be there with him. I had to choose between my kids and my husband. My parents were able to be supportive. So, my husband and I lived in the hospital and they lived across the street in the hotel for six months.

The one thing about Mayo is that I was able to get a palliative care team. I had social workers for my kids, but that was because I pushed. We had different grief groups that I was in — any kind of resources that I could get. Health care is understaffed, so many things are just not offered.

My husband could have gone home to die, but we couldn’t get in-home care to come in. I was too worried about me being unable to do that for him. He went into the hospital around Thanksgiving, with the same type of rare cancer that Steve Jobs had. There was well-funded research because of that, so there were treatment options. All three opinions said it is not curable, but it is treatable. He would feel like crap while taking chemotherapy, only seven days out of the month, and then it would be great. That went on for the first few months. Then around Thanksgiving, his blood sugars were dropping so low, which is not good. He would pass out.One time it happened in the shower and I had to lift him out.

I’ve done a lot of volunteer work since with the Grief Club of Minnesota, which is offered in different districts in metro areas. We could do better [with grief counseling resources] in smaller towns. And [counseling is rarely] offered for kids.

Jennifer: I think we are culturally much more comfortable with divorce grief groups. We are not good at talking about the end of life. We shouldn’t be waiting for our kids to externalize and have a behavior in order to offer obvious services that we know could help. Like somatic regulating, centering. We don’t need to wait for a child to be truant, or be flipping tables over in a classroom. We know there is a level of stress in your home when someone close to you is very sick, or has died — or you’ve lived in a shelter with domestic violence.

Alena: Transportation was one of the things for my husband and me after he was in an accident. He broke both legs, and both had to be kept straight. We had to pay $500 to get him home from the hospital. They were discharging him, and I was frantically trying to find a place that had the right vehicle to get him home.

He is part of a construction union. Listening to all of your stories, we are fortunate to have somebody with us every step of the way. I was working part-time. After my husband got in this accident, the short-term disability the union offered was $200 a week. The doctors said he could not work for at least a year. So, we looked into Social Security disability. Denied. I tried to get the bank to pause our mortgage payments, but got no help there.

Thankfully I found another client, which increased my weekly hours. Granted, I was now working full time and making sure the kids were getting what they need. You just do it, right? The fight or flight in you — the fight takes over.

My husband also needed to be in a hospital bed in the living room. Our house was not handicapped accessible. We had to pull door frames out so he could get his wheelchair into spaces like the bathroom. It is those little things that you don’t think of. And that was all out-of-pocket expenses.

With all that needed to be done, and essentially the loss of my husband’s full partnership at that time — when do you have time to grieve? It was a two-year recovery period for us, including my husband’s subsequent surgeries.

Jennifer: I cared for my grandmother when she was dying and there was no one available for around the clock nursing care, so my mom and my aunts and I rotated, three days on, three days off. There were very lucid moments at three in the morning when she would look at me and know who I was and talk to me about her life.

People stop eating when they get really ill, and you have to make decisions [about steps to take about nourishment]. So there are worries that you carry around. You can’t ground yourself in the present moment because you’re concerned about things that are outside of your control and your capacity.

[And for those caring for loved ones with disabilities], a movement began nationwide years ago to de-institutionalize people with mental illness and physical disabilities. The push at the time was, “This will be community based.” So they shuttered [the institutions] in a very short time period, but the community support was not robust enough for what people needed. You can’t say, “We’re going to do a better job in the community,” and then not have community resources in place to help people take care of their loved ones.

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