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:
- “He’s unhelpful,” he said of his dangling right arm.
- “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.
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I can certainly relate to your experience of navigating “the multi-layered aspects of being the
primary caregiver” of your husband who had a stroke some time ago and now has dementia.
Like you, I cared for my late husband, Jerry, who had Lewy Body Dementia, for nearly a
decade. For nearly all of that time, we were inseparable. As his dementia progressed and his
condition continued to decline, I could no longer let him out of my sight. He struggled with his
cognitive ability, lost the ability to do simple math and write a coherent sentence or paragraph,
and more. Sometimes even his spoken word was equally confusing. I established a simple
daily routine for him, and we pretty much stuck to it until his needs changed, and then I would
modify his routine accordingly. Although some advance planning was very helpful, many
decisions had to be made on a day-to-day basis in response to his ever-changing needs for
I learned early on that each caregiver’s journey is unique to that caregiver and her/his loved
one. I also learned to be grateful for the good days, and to be as prepared as possible for the
more challenging ones. And I learned the importance of engaging your loved one in daily
conversation, physical exercise, and other brain-stimulating activities (e.g., puzzles, coloring,
watching TV together, etc.) as well as continuing for as long as possible to do the things you’ve
always loved doing together.
Eventually I realized that I could no longer keep Jerry safe in the apartment that we had been
living in for only six months. So, in the midst of the pandemic in late May 2020, I reluctantly
made the emotionally difficult decision to move Jerry into a long-term facility for persons with
dementia. But my responsibilities as his primary caregiver did not end there. To the contrary,
because I knew Jerry better than anyone else in the world, my advocacy for him and for the
quality of the care he received became paramount until August 23, 2020, the day he passed
I wish you well as you continue on your caregiver’s journey.
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