She Wants to Put Me in a Box

By Guest Blogger Katharine Malaga

This week we’ve invited Katharine Malaga as our guest blogger. Katherine is a retired RN, ESL teacher, and Spanish interpreter and lives in Minneapolis, Minnesota. She is writing a memoir about the multilayered aspects of caregiving after her husband’s stroke and dementia.

Katharine’s husband, Ross, had a massive stroke several years ago, which drastically changed their lives of travel and adventure. Ross is now facing dementia. One interesting thing about Ross is his uncanny ability to use words in a way that seems slightly off but is incredibly insightful. We wanted to post this because many of us have similar struggles or may have them in the future. Thanks, Katharine!

Here are some of the unique ways he has relearned to use language:

  1. “He’s unhelpful,” he said of his dangling right arm.
  2.  “Who’s coming tomorrow?” he asked one Wednesday evening.

             “Rachel,”  I said. “Your favorite.”

             He looked down and moved his jaw back and forth while gathering his words.

             “I would like a degree of freedom.”

3. “Hee..loo,” Ross said.

             A  loud bang thundered in the background. Maybe a truck backfiring.

             “Where are you?” 

             “ I…I…am… at the… apogee… of my walk.” 

“She wants to put me in a box,” Ross said one day.  He had overheard me discussing memory care options on the phone.

I don’t want to put him in a “box,” but he needs more care.  His doctors are recommending 24-hour supervision because of his decreasing memory, judgment, and poor balance. 

I am home twenty-four hours on most days. But sometimes I take the bus to a grocery store or to get a haircut. Today I had an appointment with a retina specialist and Ross was alone from 8:15 to 10:00. Last week I saw another eye doctor and a physical therapist. I have a mammogram on the 28th. I could take him with me, but that would be hard for him.  I text him when I arrive somewhere and he texts back. I come and go as fast as I can. He worries about me as much as I worry about him.   

My efforts to find home health care have not been successful. Between the pandemic issues and the shortage of home health aides, agencies cannot find workers.  (Minnesota is reporting a need for 15,000 home health aides.) “We hear that all the time,” his doctors tell us.

I put him on a waiting list for the Veterans Administration Home (VA) last June. They told me there was a two-year wait for veterans with  “immediate needs.”  I was surprised when they called last week and said he was getting close to the “top of the list.”  

I spent about thirty hours filling out their thick packet: tax forms, one year of bank statements, insurance forms, health records, marriage and divorce degrees, rental agreements, and more. 

The facility is on the Mississippi River and sits on 53-acres of woods.  Every resident has a large private room and bath that meet disability needs. They have a medical, dental, and podiatry clinic in the building and provide transportation to the nearby VA hospital and clinics. I take Ross to those appointments at Hennepin County Medical Center (HCMC) now, but it is getting more difficult for him to get into cars. They also have a barber shop which after COVID has been very difficult to schedule.

“I like it,” he said. I was impressed, too.  There are a lot of patios and gardens for walking, as well as decks on each floor.  They can accommodate a vegetarian diet.  They have mass on Saturdays on the first floor. It is on the bus and light rail lines. All visitors must wear an N95 or surgical mask, plus a face shield in the skilled nursing area. They must mask in the hallways.

If not for the price, $11,000/month, I would be making plans for his move there.  (The community  standard for skilled nursing/memory care is $10,000 to 12,000 per month.)  He has long term care insurance that would pay about a third of that, but so far they have denied him coverage.  We are applying for the sliding scale payment plan, based on income.  I still have more paperwork to fill out. The VA is doing a background check and getting his medical records from HCMC.  (Unlike assisted living, he must prove medical needs.) It may take a month or two before we can make a decision.

We don’t know if it will work out, but we are looking into the possibility.  These are not easy decisions, not what we planned, at least this early in our lives.  But, we have to try to meet his ever increasing needs for care.  

It’s not a “box,” but it is a more restrictive way of life for both of us.  This is what so many face with age and disease.  

Retirement During a Pandemic

Garden in July

In the middle of July 2019 I announced my intent to retire at the end of June 2020; nearly one year in advance.  Some people thought that time frame a little excessive.  Would I not be considered a lame duck for the entire year?  What would this mean for my ability to lead?  Yet I know my boss, the Superintendent of Schools, appreciated the long lead time.  I was a department Director for a school district and sat on the Superintendent’s cabinet.  This gave him plenty of time to find a replacement. 

I had a plan for winding down my time in the school district.  Get as many projects as I could completed (or at least underway) before I left.  And start helping my husband with his business.  Things were moving along nicely.  I was very productive at my job while also helping my husband deliver in-person workshops around the state on weekends.  I was a little overwhelmed but feeling good. 

Then came March 15, 2020.  That was the day the Governor of Minnesota announced that, due to the COVID-19 pandemic, the state was going into lockdown and school districts would start planning for distance learning.  Students’ last day of in-person school would be March 17.

That changed everything. For everybody.

For me, as a school district employee, that meant stopping everything I was doing and refocusing on distance online learning and childcare for essential workers.  It meant many daily meetings (virtual, from home), onslaughts of emails, sifting through pages and pages of Department of Health and Department of Education guidance that changed daily, checking in with my staff, checking in with others in my field, all while still trying to move some projects forward with the hope that school would reopen in the fall.  It also meant that my husband’s in-person workshops (and therefore his business) came to an abrupt halt.  Not that I would have been able to do them anyway – I had to work on weekends as well. 

This went on for three and a half months – right up to June 30.  Then on the morning of July 1, I woke up to – nothing.  It was jarring to say the least.  Don’t get me wrong – the weight of the stress lifted from my shoulders made me feel I was floating on air. I was happy to shed that weight.  Yet I pride myself on being productive and I didn’t have any idea what to do. 

Do – it’s a small word with a huge amount of baggage attached to it – at least for me. Does gardening count as doing? Does reading a book count as doing? Does cooking meals count as doing? Does going for walks count as doing? Does sitting and contemplating my life count as doing? Does it count as doing if I’m not earning money?

That last question gets to the heart of my dilemma.  I have been a consistent earner since I got my first job at age 15, nearly 47 years ago. I took only four weeks off for each of my kids. I’ve never been laid off.  I work; I earn money. That’s how I see myself. That’s been by design.  My dad died leaving my mom a widow at age 53.  She had not worked for pay since she was pregnant with me. Even though he left her with enough money to take care of herself, it hit me that it might not have been that way. What if he hadn’t left anything, and she had not been able to take care of herself?  I vowed that I would ALWAYS be able to financially take care of myself and my family.  I was 23 years old.  And I fulfilled that promise to myself.  The problem is I didn’t make any promises for what I would do in retirement.

It’s taken me nearly three months to start cutting myself a little slack.  After all —we are in COVID times. The retirement life I visualized is not viable —at least for now.  It’s time to start visualizing something different and, possibly even better. We are in a period of flux where things are changing for everyone. I can use this time to my benefit.

The concept is called liminal space. “The word “liminal” comes from the Latin root, limen, which means “threshold.” The liminal space is the “crossing over” space – a space where you have left something behind, yet you are not yet fully in something else. It’s a transition space.”  (Alan Seale, Center for Transformational Presence)  This time of pandemic could be considered a very long liminal space for me, and for everyone else.

It’s time to leave behind the idea that I need to earn money for money’s sake. Financially, my husband and I are in a good place.  Between my pension, his Social Security and our savings, we can take care of our basic needs and then some.  (Although I will admit that we need to earn money if we want to live an exciting life of travel – when we’re able to travel again.)

It’s time to explore what it would look like if I were truly doing something I loved to do.  That means trying new things and further exploring familiar things. And it means shedding old ideas of what it really means to be productive and unpacking the word “do.”

When I was 23, I didn’t think to make a promise to myself for what my life would look like when I retired.  And why would I?  It was so far into the future.  Now the future is here. One of my favorite sayings is “When is the best time to plant a tree?  20 years ago.  When is the second best time?  Today.”  So today I make a promise that I will open my mind to the possibilities of what an actualized life really means for me.