Legacy, My Caregiver Story

By: Karen Lundquist

I have served as a caregiver for both my parents for the past decade or so. My father and mother met in the 1950s in Minnesota, and dad joked that he offered to help with coffee so that he could get to know mom a little better. They married in the early 60s, and adopted me in 1966, my brother Brian in 1968, and my sister Jana in 1970. As a reporter, my father, John, had an extensive filing system and copies of EVERYTHING. I found a copy of my 5th grade bike license in his files after he passed away as well as letters home from his World War II service in India.

My mother, Alice, was a homemaker. She spent her days cleaning and making sure dinner was on the table and lunches were packed for us. For both, their faith in God, hard work, and raising us to follow in these tenets was incredibly important. I remember a friend picking me up for band rehearsal. My father invited him to join us for devotions.

My fondest childhood memories are centered around climbing a tree and reading a book, visiting the library, or playing games with my siblings and the neighborhood kids. My mom could be unpredictable, and we were sometimes on edge not knowing if she would be June Cleaver or someone else entirely.

My father and mother were born in 1920 and 1930 respectively, shaped by the Great Depression and World War II. After living in the same Richfield home since 1964, in the 2000s they found themselves moving to Eden Prairie to an over-55 apartment with some amenities as well as the appeal of not shoveling your own snow. They began to slow down, limiting travel and driving. I remember my dad starting to nod off when we visited and moving more stiffly. They were still stubbornly independent and worked hard to remain so in every way possible. I gradually started to help a bit with things like getting taxes submitted or making sure doctor’s appointments happened. Brian, Jana and I also started driving them longer distances or if there was an event that would last past dark.

After a hip replacement, dad became more prone to falls and eventually struggled to get up on his own. He and mom figured out ways for him to hoist himself onto a chair, but one day he was alone in the apartment, had fallen, and spent most of the day on the floor. It was also about this time that we had to take his driver’s license away because of an accident in the parking lot (luckily, no one was hurt). We did it quickly and with as much dignity as possible, but I’m sure it was a difficult moment for him as he said goodbye to one of his last vestiges of independence. Even with these clear diminutions of ability, they still resisted anything they saw as limiting or loss.

Brian, Jana and I had different opinions about how much independence they could still have and how challenged they were. We were able to have good conversations (often a conference call!) and agreed on keeping two things at the center: safety and keeping them as healthy as we could. Luckily, Dad had planned ahead, and they had set up their funerals (I was at the meeting with the funeral home) and had also put together wills and power of attorney/medical directives with the help of an attorney. I was the primary person named in all the documents, with my sister as the secondary.

However, I think we were a little blind to the level of care needed. They both wanted to remain independent and would simply deny any problems and cover for each other. We tried to bring in home care help, but both were very uncomfortable with having someone in the home. Ultimately, a crisis with my father becoming hospitalized and recuperating for weeks meant that we had to move them quickly and without being able to bring him into the decision. In just a couple of weeks we moved them a few miles away back to Richfield and into a completely new experience — assisted living. Not having to cook appealed to my mother, but less space was not a plus, and she missed the windows and the view. We had a reprieve, feeling like they had more support and someone keeping an eye on their physical needs. They settled in, still missing their old life, but seemed stable and relatively healthy. Brian, Jana and I would gather to address crises and for an annual assessment. We fell into our roles — me, the oldest, handling the legal and medical needs, Jana visiting with the three grandkids, and Brian visiting regularly, getting the most phone calls, and making sure the TV was working. We all worry, we all want to make it better and to make sure they know we love them.

I handled all the financial decisions and day to day medical needs at the same time that I moved to Sioux Falls, then to Austin, Texas. I still think of it as “no big deal — just paperwork”. But it is much more than that. I wonder if I’m doing enough. I feel guilty for not visiting more. I struggle with whether they will outlive their money. I worry. And worry. And worry. This is chronic. The only end is death. They are not happy — not in the way they used to be — and they are both in pain. They have less and less control over their lives. What do I “owe” them? What do I want to give? What must I give?

Although I’m married, I don’t have children, and I wonder what my old age will be like. Will I have support?  Friendship? Connection?  What about my physical and mental health? My wife and I also help support her parents, who live in Western Nebraska. They are 5 to 15 years younger than mine, and have a different set of challenges. Living in a small town, there are often miles to go for clinical care, and weather can make those miles downright dangerous. There are fewer options for the kind of care that could help extend their independent living days, although neither are near needing to make that decision. There have been challenges like losing sight in one eye and the need to determine if there were other potential issues, as well as managing heart issues and diabetes. Since my work is flexible and we are within driving distance, it has been a blessing to be able to help get them to procedures and to make sure they aren’t facing things alone.

For the most part, caregiving is just a thread in my life. It is an item on a to-do list, a topic of conversation, or some problem solving and research. But sometimes, it is much more jarring. One of the most horrible moments for me was my dad calling me late at night from the hospital, saying that the television in the ceiling was giving him stock tips from Japan. I wound up calling the hospital to make sure they gave him sleeping pills to avoid hallucinations like this. It was a turning point for me that signified a switch to parenting my parents.

Dad lost his physical abilities much more quickly than his mental faculties, or at least that was my hope. Imagining him not being able to think and read and write was my biggest fear. It’s what I respected him for and what I feel inspired much of my career. It became my mother’s greatest fear that she would lose him and she fell into a role as caregiver, too, which was a natural one given her era and her nursing background. Neither of them had close friends and most of my father’s siblings had already passed away. My mother has three sisters and a brother still living, and they had contact via phone calls, letters, and special occasions. None of her sisters are married, but there is a plethora of cousins and second cousins.

There were hospitalizations and limitations big and small for my dad. My mom flirted with diabetes and beat breast cancer twice. She had a small skin carcinoma removed. All in all, her physical abilities stayed relatively strong, but her mental faculties began a serious decline. Her mother had died after about 8 years with dementia (likely Alzheimer’s) and had a bad time of it. She was in a nursing home with no family nearby, and became combative, angry, and bitter as her world shrank. One of my mom’s sisters exhibited symptoms, too, and moved from her apartment to a memory care unit as she began to accuse neighbors of breaking in and hiding her things. We saw similar issues with mom but living with my dad in assisted living masked many of her memory problems.

Then, on October 30, 2015, my father passed away. I was on my way home from Austin, Texas, for a visit, and I was just a few hours away. I didn’t make it in time, but my brother, sister, and their families were able to say good bye or had seen him earlier that week. My mother was with him, along with a hospice nurse. (Sidebar:  DO HOSPICE.) He had told us he was ready to go several years before, and it was a relief in some ways. It was also the passing of an era and was incredibly sad for all of us. He was the parent that played with us, who was funny, and wrote long, entertaining letters (and corrected our replies!). He worked hard and lived for us and for doing good work. He was curious and creative and gave us a beautiful legacy.

And my mom.

Now she was alone. She was devastated. I was relieved we didn’t have to remind her he was gone — she remembered. She stayed in her apartment, with the emptiness that my father left, and talked about missing him. Her memory loss became more obvious and all the ways that she had masked it with my dad’s help. My worst moment with her was taking her to get her memory checked. The clinician asked me to leave so he could talk to her privately. When I returned, he told me that she didn’t know who had brought her to see him

She was not charming, but she lost the edge that we experienced in childhood. She wasn’t happy, but she wasn’t angry. She was much more difficult to visit than dad. There are incontinence issues, the difficulty in having a conversation. The staff liked her. She was easy to work with, very malleable. We didn’t worry too much, she seemed like she was doing well. I set her physician up to come to her, with the hopes that they would let us know when it was time for memory care. I would visit occasionally, but it was less frequent for all of us than it was when dad was alive. Phone calls were tough, too. Sometimes she didn’t hear it ring. She had no idea how to listen to messages, and it was tough to have a real conversation.

As her physical health declined and she gained weight, a physical therapist came to help her learn to use a walker. They were the ones who told us she needed to move because she was no longer safe and that she needed more care.

In a horrible snowstorm, Brian, his wife Judy and son Alex and I moved her to memory care, just a few doors down from her sister. She left in the morning and came home to a new place. We hoped we were doing the right thing, that this was the right place for her.

And maybe that’s the right metaphor. A snowstorm that obscured all detail, that made it difficult to move forward or to complete your plans. Snow and a stiff wind made drifts that masked what was normal. The city was quiet, waiting.

For me, that snowstorm has taken away any chance for me to reconcile with her. To truly discuss why she had such a hard time being a mother, offering unconditional love, or understanding that the world had changed since her childhood in North Dakota during the Great Depression. There was no longer a chance for her to understand that my marriage to a woman is the best part of my life or to express her happiness for me.

That snowstorm continues, deepening the quiet and changing the shape of the world. We’re happy now if she goes with the memory care group on an outing. We’re happy if she remembers our names. We’re happy if she laughs.

I hope she is happy, too.

Karen Lundquist