There is a photo circulating through social media lately of two health care workers in protective gear, standing at a window inside a hospital, with signs taped to the window reading “He is at peace,” and “We are so sorry.”
This, I fear, is my future.
When my wife was diagnosed with Alzheimer’s disease in July 2014, I knew we were in for a long, hard road. And I knew that skilled nursing care might be necessary at some point. Even if I could care for her at home, I have to work. I put it off as long as I thought I could.
Our situation is different from many in one respect in that my wife was early-onset, diagnosed at age 45. Our son was just six at the time.
We got our legal affairs in order while she was still capable, and even before this, we had spoken in general terms about each of us would want if we could no longer care for ourselves.
But nothing really prepares you for dementia. To watch your loved one, still of sound body, gradually lose their mental faculties over a period of years. It isn’t just memory; it’s logic, and every simple cognitive skill a person has at their disposal.
And Rebecca had many. She was a musician and an artist, as well as an avid scuba diver. When her disease took hold, her art actually took off, at least for a while. Eventually, even that faded, along with most everything else.
In the fall of 2018, she started attending an adult day care program. Once a week at first, then, after a seizure in November of that year, five days a week. This allowed her to be safe while I worked and our son was at school.
In online dementia caregivers’ support groups, a common question asked is “when should I have my loved one placed in assisted living, memory care, or skilled nursing.” A typical answer is “when you’re asking the question, it’s time.”
More practically, the tipping point for people varies. For some, it comes when a person becomes combative or violent, or when incontinence starts, when they begin to wander away from the home, or when the stress on the caregivers gets to be too much.
I had been lucky. My wife didn’t wander and she had rarely been combative.
Then came the pandemic and the “stay at home” orders. We’re in California and we shut down earlier than most, though probably not early enough. My wife’s adult day care program closed after March 19th, the same day Governor Newsom issued his order.
I had hired a caregiver and taken our son on a brief trip just prior to the shutdown, my first two good nights of sleep in over a year. Places were already starting to close, but we got some rest, and when the shutdown order came, I was as prepared as it was possible to be.
Of course, it would be difficult. I was lucky to still have a job, but I was now working from home, overseeing our now-twelve-year-old as he attended school from home, and caregiving.
I set up my laptop at the dining room table. When I had Zoom meetings, our son tried to watch over his mom, to make sure she didn’t get into anything dangerous. One of us needed to be watching most of the time because she spent most of her day pacing the house. Her cognitive skills diminished, she would walk back to the bedroom, pick up a piece of clothing or some other item, and carry it around the house before dropping it on the floor.
My standards had long since been lowered, so the cleanliness of the house was of little concern. My son and I would just try to keep her from opening and destroying the food items—she would sometimes take bites out of several apples and drop half of them on the floor—and away from anything dangerous.
When one of us had a Zoom meeting, the other tried to cover. Unfortunately, these meetings would sometimes overlap, so often, one of us was stepping out of our meeting and attending to Rebecca.
This part was stressful, but manageable.
But about the time of the stay at home order, the combativeness began in earnest. She would argue and fight when I helped her get dressed, shower, or use the restroom. Most of her vocabulary was gone, but she had enough to stammer “I’ll just go” and start to walk away. She never got out of the house, but it was getting more difficult.
A phone visit with one of her doctors got a change in medications, and it did help. The combativeness was down about ninety percent. But the anxiety and almost nonexistent attention span that led her to wander the house was unchanged.
Progression seemed to have accelerated with the stay at home order. It would be easy to blame the change, the closing of her adult day care program, but in all likelihood, I suspect it was coincidence. It had been almost six years since her diagnosis, probably more than eight since discernable symptoms appeared. Progression had been happening all along and it was inevitable. I have nothing but gratitude for that adult day care program; they gave me another year and a half with my wife at home.
Rebecca was now entering the seventh stage of Alzheimer’s, where the disease begins to manifest substantial physical, as well as mental symptoms. She now couldn’t sit up straight, even in the car. She’d lean over, falling into the cupholders separating us, sometimes landing on the gearshift.
She walked now with a pronounced lean most of the time. She lacked balance, and just as importantly, judgment. She would often try to sit down where there was no chair.
In her last few weeks at home, she was falling at least a time or two most days, sometimes more. She’d walk around until she tired herself out, then lacking balance, she’d just fall over. Generally, she’d land on her bottom and be uninjured, but it seemed it was only a matter of time.
When the COVID 19 pandemic hit and the stay at home order was issued, I had already been close to having her placed. I had agonized over the decision for well over a year, but the stress was building, for all three of us.
But with the pandemic, I thought I’d need to delay, at least a few months more. Skilled nursing facilities were being devastated by the disease. All visitation was cancelled and severe restrictions were in place. Placing her meant an increased risk of her contracting the disease and the likelihood that we wouldn’t be able to visit for quite some time. So, I waited.
But now, it was a matter of safety, not just stress. So reluctantly, I made the necessary calls, with her doctor, who quickly agreed when she saw Rebecca’s progression just since her last visit, and recommended the place where her own grandmother stays, and also to the social services people to arrange financing, a bureaucratic nightmare in itself.
On the morning of May 13th, my son and I drove her to a skilled nursing facility, where I signed some paperwork and took more paperwork home with me, and they wheeled her away. In addition to her box of belongings, I included a one-page introduction for the staff, a couple of family photos, and a note saying
“Rebecca loves art and beautiful things, pugs, scuba diving, Shrek, Aquaman, and Star Trek.” Such little info to summarize her life.
Because her cognitive skills are so diminished, Rebecca had no idea where she was, or why. She probably still doesn’t.
And now, I may never see her again.
I can’t blame the facilities for these restrictions. Even with severe lockdowns, skilled nursing facilities have been devastated by this pandemic. Estimates vary, but at least a third of all confirmed COVID 19 deaths are in nursing homes. In some states, it’s more than half. In our small county, at least five facilities have cases. One has dozens of deaths. The only facility in our city with a locked dementia wing has at least 53 COVID 19 cases as I write this. Luckily, the one where she is has none, at least so far.
Prior to being admitted, my wife was tested for COVID, and she is free of the disease. Still, she is separated from other residents for the first two weeks of her stay. Staff are temperature-checked daily.
I was unable to set up her room as I normally would have or even tour the facility prior to choosing it. My wife has been there for eleven days as I write this, and I still haven’t been past the front door.
These restrictions are necessary and reasonable. And sadly, they’re likely to last a while. Residents of these facilities are so vulnerable, I suspect visitation in most forms will be banned for months at least. I’d be surprised if they were lifted before a vaccine is available.
Perhaps just as sadly, while these restrictions are necessary, they may not be sufficient. Because the disease can be carried and transmitted by asymptomatic carriers, it may not be possible to keep it out of more facilities, as current infection rates already show. There are too many essential workers and others who simply ignore rules and recommendations on social distancing. And the employees of these facilities certainly interact with these people.
Predicting life expectancy for an Alzheimer’s patient is a fool’s errand. Estimates range from six to fifteen years, to even longer. Early onset patients tend to progress faster, but as her body is otherwise young and healthy, my wife could live a very long time in the final stages.
Or….not. She wasn’t eating well in the last weeks before she was placed. They weighed her on admission and she was ten pounds lighter than what I remembered from her last doctor’s appointment, which was already the lowest since I’ve known her. She could live for years, or maybe just a few months. And however long it is, she is progressing quickly.
My son and I are adjusting to a quieter life. I keep looking around, expecting her to need something. For the first few nights, I slept better, but not since.
Because I still worry about how Rebecca is adjusting. I know from speaking with the facility that she has had at least one fall, that she refused to take her medication at first, but that she was eating, at least some. But she must feel lost, confused, and most heartbreaking, abandoned.
Eventually, after an adjustment period, we may be able to do window visits, or visit through technology, such as Facetime, Skype, or Zoom. But with a dementia patient, that’s a precarious option. She may not understand, she may panic and expect to go home with us, or she may get confused and walk away. We don’t know yet.
What I want is to hug her, hold her, and reassure her that things will be all right, as I have done a dozen times a day over the past six years, and more like fifty times a day the last couple of months. Although the peace these reassurances gave her was transitory, it was precious nonetheless. By the time visiting is allowed, if it indeed is, will she even respond? Will she be reassured? Or will she not have a clue who we are?
When the final day comes, I want to be there, holding her hand, granting her permission to let go if it’s time. I still hope for that.
But because of this pandemic, I may not get it. My son and I may be the ones standing on the other side of that window as the caring, but stoic health care workers hold up signs telling us she is gone.
I only hope, for Rebecca’s sake, that one of them holds her hand if I can’t.
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Photos courtesy of author