Sandwiched — Part Three
In-home Care Coverage Works! (until it doesn’t)
My grandma, Jeanette Curto was diagnosed with Alzheimer’s in the mid 1990s. My mom’s mother was the matriarch of the family; she was a firm but generous woman who had a hard life. Married as a teenager, she raised two daughters and helped run my grandfather’s tailor shop in Buffalo, New York. My grandfather died before I was born so my grandma had been a widow since her mid 50s. She lived alone, volunteered at a hospital as a florist, and loved to cook. Nothing made her happier than her family, and making sure they were fed.
I was very close with my gram. She was the first environmentalist in our family — she would have small compost piles where she would put egg shells, coffee grounds and various vegetable scraps into her outdoor garden. She also broke down boxes, milk cartons and other large objects so she could conserve space in the trash. My gram also started each day with jumping jacks, light calisthenics and several laps around her parlor.
I noticed something was off with gram during my college graduation. She made the trip from Buffalo to Pittsburgh with my Aunt Carolyn — her oldest daughter. Gram was quiet while we were taking pictures outside of the auditorium; watching the bustle of the city, she seemed to be elsewhere. My parents made reservations for a celebratory lunch after the ceremony. Gram sat next to my then-girlfriend and they talked the entire time. Everything seemed wonderful.
Afterwards, my girlfriend and I went back to my apartment. Kelly asked me, “Is everything okay with your grandma?” I told her I thought so, but then it was revealed that my gram had told Kelly how to make cannoli 5–6 times during the roughly ninety minute lunch. As soon as she would finish the story about how she made the filling, then fried the shells, filled them and topped them with powdered sugar, my grandma would trigger herself and say, “you know what else I make that you might enjoy? Homemade cannoli!” It made me incredibly sad.
For the next year or so, there were some internal family struggles about my grandma. My mom felt strongly that my grandma could no longer live alone in her home, but her older sister Carolyn said that everything was okay — gram was just slowing down. My cousin John noticed during a visit that my gram had charred marks on her bathrobe. She apparently left one of the burners on the stove and burned the sleeves of her robe. And while there were other signs, ultimately my grandma was brought in for a mental acuity assessment. She was asked simple questions about filling in a clock, repeating a series of words and other indicators of memory loss or disruption. My gram failed miserably. She looked to my mom for answers but she was on an island. It was shortly after that moment that my grandma moved to the Brothers of Mercy Assisted Living Center near Buffalo. She could no longer live alone.
When I worked for the Alzheimer’s Association, I learned that hearing loss and isolation contributes greatly to dementia. An absence of daily social interaction was key in making people more withdrawn, and that simply seeing and talking with others on a regular basis has a stronger impact on our mental health than we may realize. Having that community is so critical to age healthily. Living alone can often be a serious indicator of mental decline.
There are other factors that play a significant role in maintaining a healthy brain. A healthy diet low on saturated and processed fats, weight-baring as well as cardiovascular exercise four days a week, managing diabetes, hypertension (high blood pressure), and maintaining healthy cholesterol levels are crucial. These can reduce the build-up of plaques and tangles that form in the brain as cognitive skills erode, and these clusters can form to cause various types of dementia. Getting moderate sunlight, taking walks, doing puzzles, eating a little less — all of these simple daily tasks can significantly reduce the risk and provide countless health benefits.
Years later my Aunt Carolyn would also show signs of dementia. My dad’s side of the family was no different. When my dad was a teenager, his grandmother from Warsaw, Poland came to live with them. She would often talk to ‘the lady in the window’ for hours about the old country. It turned out that the lady in the window was herself, she was standing in front of a large bedroom mirror. Those memories stayed with him and affected him deeply. In addition, my dad had two cousins and an uncle that had suffered from Parkinson’s which led to dementia. This is in our family history, and while this is not officially part of our DNA, I’m not solely convinced that it isn’t. The truth is we truly do not know.
Because of this history, my parents have traditionally been open about talking about mental decline, aging with dignity and seemed open to moving to a nursing home when the time arrived. My mom shared that some of the care giving she performed for her mom, mostly bathing and toileting, is not something that any child should have to do. It scarred her, having a triggering effect on her that never subsided. According to a study performed for the National Institute of Health (NIH), children who solely care for their elderly or disabled parents ‘deal with the negative feelings, such as resentment, anger, frustration, ambivalence, guilt and demoralization.’ Caring for our parents should be a choice, not an obligation — and one that should be considered deeply before they begin. It’s a treacherous journey.
Full NIH article — https://pmc.ncbi.nlm.nih.gov/articles/PMC1267585/?page=1
The University of Michigan’s School of Medicine conducted a study specifically highlighting how our Sandwich Generation struggles caring for both their parents and their own children. Specifically they cite that ‘sandwich generation caregivers were twice as likely to report financial difficulty (36% vs. 17%) and more likely to report substantial emotional difficulty (44% vs. 32%) than their peers who only act as caregiver to a parent over 65.’
Full article — https://www.michiganmedicine.org/health-lab/sandwich-generation-study-shows-challenges-caring-both-kids-and-aging-parents
So when my mom fell and it became apparent that my parents needed support, alarms sounded. All of the previous talk about getting help when help was needed remained intact. My sister and I found an organization that would care for our parents, so they could remain in their home. When that did not succeed, we found a different group of helpers that could be deployed to my parent’s home on a regular basis. This second legion of supporters were a perfect match. Their temperament, willingness to take on numerous tasks, and their ability to ease the burdens that plagued my parents were a godsend. My sister and I spoke often about how fortunate we were that we could do this for our parents, without the worry of cost or stress. We knew we were incredibly lucky — likely the top one percent of caregivers in the Sandwiched group.
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Early on, however, my sister did have to help my mom with some bathing and other temporary care. I could see it on her face how uncomfortable this was, actually on both of their faces. My mom didn’t want this nor did my sister ask for that role. But it was necessary, and temporary. Even though there were discussions about not wanting this for us, it happened. Sometimes these are unpreventable obstacles. Thankfully for both of them, it only lasted a weekend.
Over the course of the next four to five months, normalcy returned to my parent’s home. They had someone to drive them to doctor’s appointments, to place online orders for grocery deliveries, to prepare meals, finish laundry and be a trusted companion. Because of the foresight of my dad, their needs were met due to his long-term care insurance, his pension and their health care coverage. But again, they were an anomaly in a sea of Boomers. How many Sandwiched children were, and are, feeling the burden of making their parents comfortable as they decline, but keeping this house of cards stable.
The holidays came and went and with the New Year unfolding, the stabilizing presence of their caregiver routine gave my sister and I a sense of security. We could continue with our focus on jobs, launching our children and enjoying this middle phase of our lives. It also spawned numerous discussions between my wife and I about what our plans would be, and what we would like to do in order to free our children of this burden.
In early February, I got a call from my mom that my dad had some fluid building up in his legs. I had just been there to visit a week earlier. I helped my dad with his socks at one point and noticed that his lower legs looked like overripe eggplants, purple and plump. I asked my mom about it and she said she would talk to the doctor. The situation apparently had gotten worse to where she had a caregiver drive him to the hospital. He would remain there for over a week with cellulitis in his lower extremities.
I was not able to visit while he was in the hospital, but the reports I received were horrible. My dad was incredibly disoriented and showed significant agitation at night, what I perceived as an indication of sundowning.*
*For those who don’t know, sundowning is a phenomenon in dementia patients, characterized by increased confusion, anxiety, agitation, and behavioral changes occurring in the late afternoon or evening. It is commonly seen in middle-to-late stage Alzheimer’s and is believed to be caused by damage to the brain’s internal clock, often triggered by fatigue, low light, or reduced stimulation.
The doctors administered Haldol, a high-potency antipsychotic used to treat schizophrenia. I was told that my dad would become aggressive with the nighttime attendings, so they heavily sedated him. He was also on an intravenous antibiotic — a telling sign as to how advanced the cellulitis infection had become. The administration of that drug coupled with his Parkinson’s med sped up his confusion, anxiety and agitation — causing a perfect storm for an increase of dementia-like symptoms. It was hard to decipher if it was the meds causing this change or the progression of his illness.
He would lose almost twenty pounds over the course of the week, some from the fluid loss, other due to how ravaged his body had become. He was constantly confused — a major leap from his general Parkison’s related delays. He blamed my mom for this decision. “How could you do this to me!?” he told her.
When I came in, I was ready to make major changes given this news. I arrived at the rehab facility where my dad had been transferred upon his release from the hospital a day earlier. It was a smooth transition — the facility was hospital-lite with less clatter and chaos than where he was, but with the security that help was only a few steps away. My dad wore a ‘Fall Risk’ bracelet and was belted to a wheelchair. He looked gaunt and slumped over as if life itself gave him discomfort. I hugged him and asked him how he was doing. He said, “(Mary) tell Jason we have to find the realtor.” I was confused so I asked him why. “This place is going to sell quickly, we need to make an offer! Look at all this land!” His room overlooked the parking lot of the suburban rehabilitation center, beyond that a corn field. He thought we were house hunting and were going to buy this place.
My mom had been by his side this entire time, refusing to leave until the doctors informed her that visiting hours were over. After over sixty years of being with her partner, she was not going to leave her man behind. Her caregivers drove her each day to the hospital while she sat with him — sometimes in silence for hours as he slept. She was unrelenting and stoic.
When I took her home that first night, she broke down. It was all too overwhelming for her. She was so worried about the future and told me outright that she had been helping him for years — to hide the things she felt might be shameful. But there is no shame in this metamorphosis. We all age differently and it impacts all of us in different ways but none of us avoid it. We all need help at various times in our lives, and every single one of us has a shelf life.
Over the course of that week when I stayed with her, I would drop her off at the rehab facility around 10 am. I’d stay for a bit and talk with the doctors who were caring for him. They said he was improving — the cellulitis had decreased dramatically, but he was still very weak. He had to call for help to move from the chair to the bed, and his appetite was waning. While mom stayed with dad throughout the day, I would go back to their home and help shore up some things to lessen the burden for my mom. She’d never paid bills throughout their marriage. My dad handled all the finances. So I put everything on automatic bill payer from the utilities to the HOA fees. I contacted their accountant about doing their taxes, cleaned up around the house and other subtle things I felt could help.
Additionally, I spoke with my father’s case manager about his long term prognosis and what his needs will be once released. I felt like my mom was giving me tailored information about how my dad was doing. She would say that he’s doing ‘much better’ in vague terms but would stop short about discussing his real diagnosis. The case manager painted a starker picture with bold brushstrokes. My dad would need memory care, likely in an assisted living facility. It was unlikely that he would be able to be properly cared for at home. She said he was unable to follow lines of questioning that in years past he would see coming a mile away. It wasn’t pretty.
My mom was worried about discussing the idea of an assisted living facility with my dad. She felt certain that he’d oppose, especially in light of his statements at the hospital. But she also admitted she couldn’t keep up with this anymore. Her sleep was suffering. She had shuttered her own rehab treatments for her still healing broken arm in order to be with him. Something had to give and the solution seemed apparent. She longed for their past together; a freedom from the responsibility of decision-making, paying bills, and scheduling all these caregivers. She was waving several white flags and it was impossible not to notice.
I broached the subject about touring a few assisted living centers for places that not only had memory care but various phases of assistance. This way she could be close by, no longer burdened with how she could visit with my dad, have meals with him and just be with him — but she could also be released from the weight of making critical, daily decisions. Both of my parents had worked hard and saved for their future. But the future was here, pounding at the door. My mom was on board. We would visit three facilities before I went back to Virginia.
Part Four — The Best Laid Plans of Mice and Men Often Go Awry
