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My COVID Story
Keep in mind, no one in this story, which is true, ever contracted COVID-19. But this story is about COVID and its impact on real people. I write this with some reluctance as this story is highly personal and involves people dear to me. But it is an important story, so I am sharing it.
My Dad, about whom I’ve written before, lives in The Villages in Florida. When he retired, he bought his first place there, splitting his time between a southern New Hampshire townhome and Florida. He retired a vigorous man, enjoyed bad golf, and all the other activities offered at his winter homestead. He and his girlfriend were serial travelers and traversed the world, two or three trips a year, often with their Villages friends. They traveled so often they actually returned to places that they especially loved. I know that they cruised to Alaska at least three times. The British Isles were also a favorite as was Italy.
At 75, he sold his townhome, purchased a larger home in the Villages, and moved to Florida to live year-round.
As he approached 8O, time’s health toll started to come due. Setbacks piled up; conditions that were difficult to dial in, like low blood pressure and a slow heart rate. Little things, like getting up from the easy chair or getting into his SUV, became difficult. He napped all the time but could not sleep through the night. His cardiologist suggested a pacemaker, but that idea was abandoned when he had no issues whatever with a stress test. The problem, it seems, was inactivity. He needed exercise. So he started walking. And walking. Then, on a particularly vigorous walk, he lost his balance, fell, smacked his head shockingly on a curb, and knocked himself out.
He woke in the hospital, stitched and bandaged. The MRI showed no bones broken and he suffered a concussion, but there was this shadow at the base of his brain, next to his pituitary gland. This was not good: a tumor.
Chemotherapy treatment was a long-term ordeal and hardly ideal for an 80-year-old man. Another option was surgery. There was a specialist in Jacksonville who’d developed a method of removal through the nasal cavity. So on to Jacksonville, another MRI. The tumor was on the move so there was no time to waste. The tumor had to go.
Success!
But recovery was elusive. His pituitary gland refused to come back online; Dad’s entire endocrine system shut down. No thyroid function, no adrenal function, no testes production. The shuffle of an artificial replacement began. They gave him two emergency bracelets; one for Addison’s Disease and one for Grave’s Disease (insufficient adrenal and thyroid function.) He did two tours in rehab. Finally, they sent him home, but within a couple of weeks, he suffered a setback that sent him back to emergency: a sudden electrolyte imbalance often associated with pituitary insufficiency. Miraculously, he did not die, but he did end up back in Jacksonville and then back in rehab.
After a few months, things stabilized. That is until he had an “episode.” Back in the hospital, it was determined that he’d suffered from a transient ischemic attack (TSA); that is a mild stroke caused by a blood clot. MRI’s showed no damage, but the stress kicked hard, so back he went to rehab. Now the blood thinner Plavix was added to his prodigious pill consumption. A type of monitor was wired to his heart to detect fibrillation. Every night he had to hook himself up to a modem that transmitted his heart data to his cardiologist.
Out of rehab and back home, he was happy. That was when I last visited, about a year ago, and Dad was doing pretty well. There were some heartbreaking moments for me, but he was progressing and trying. We talked about the future; assisted living? Coming to live with me in Arizona? (I have plenty of room; he could even bring his girlfriend, an accommodation he never allowed me, by the way.) I left Florida sad, but optimistic. The man had spirit, but cats like him do eventually run out of lives.
After I left, he thought he was well enough to take a trip back to New England to visit my brother in Massachusetts and my sister in New Hampshire. My brother was shocked at just how my father had declined, but it was in Laconia with my sister that my Dad once again suffered a TSA. She took him to emergency where, once again, the symptoms declined on their own with no discernable damage. However, he was diagnosed with severe carotid arterial blockage. He elected immediate surgery and in two days, he was back in rehab, this time in New Hampshire. After four weeks, he was discharged. Despite my sister’s admonitions, he was determined to get back to the Villages. He booked the earliest flight he could find; it required a change along the way. Bad plan. There was a delay and he spent hours, hungry, thirsty and alone in some airport in a wheelchair unable to move or even get up. He did eventually make it to Orlando early the following morning, but the trip was a disaster and set him back.
The next few months in the Villages were difficult. He was prescribed outpatient rehab but it was curtailed after a month when, as I’ve now learned, he failed to make progress. His cardiologist kept him on Plavix and scheduled a “Watchman” defibrillation implant so that he could be weaned of toxic anti-coagulants. His testosterone therapy had been discontinued after his carotid surgery and was restarted. His thyroid and adrenal medications were adjusted.
At some point though, he lost control of his medications, stopped taking some, dropped testosterone altogether, and took others incorrectly. That’s about when COVID arrived. Day by day, he declined. Then, he collapsed. His girlfriend and a neighbor put him back into bed. He was unable to do anything. Of course, my siblings and I were desperately trying to get the measure of things. I called a cousin who lives in the Villages and he made a visit. After getting his input, my sister told him to call an ambulance. She wanted Dad transported to Leesburg Hospital, not the Villages Medical center. There he was diagnosed with critically low platelet levels and problems associated with a failed pituitary (adrenal and thyroid insufficiency.) Plavix!
The previously scheduled Watchman procedure was delayed indefinitely. The care in Leesburg was exemplary and within two weeks, his medications were controlled and he was transferred back to a rehab facility in the Villages. My Dad has nearly no memory of his time in Leesburg nor of the problems leading up to it.
I wanted to be there with him, but my siblings were frightened I might pick up COVID on the plane. I could drive, I said. That was better, however, Leesburg allowed only co-habitant visitors. All others had to be tested and quarantined. His rehab facility is even more restrictive. They allow no visitors at all.
So my Dad is essentially in jail, isolated and left to his own melancholy, wheelchair-bound and alone. We await the decision to insert the Watchman. I call him daily, and honestly, he is losing spirit. I try to give him hope. Once he breaks out, I’ve told him, I’m on my way. It will take me two very long days to drive, but I’ll be there.
In the meantime, the Villages rehab suffers from a chronic lack of qualified personnel. The facility is new and beautiful, but like all services in the Villages, demand far outweighs the local labor market’s ability to respond. And the overarching complications of elder care in the days of COVID-19 make everything exponentially more difficult.
It breaks my heart.
Published in General
I’m so sorry, Doug. Praying for all of you.
This is a tough sled. Best hopes.
I am so sorry. My heart, and my prayers, are with you and your Dad.
I’m so sorry. Praying for Strength for all.
COVID has many victims that are not infected with the particular virus. Thoughts for you and your family.
Me too. Prayers for you all.
and
So sorry you’re not able to be with your father right now. How frustrating and sad for you both. :(
Very sorry Doug. It hits home because he is just 5 years my senior. Unfortunately It seems as we age problems come in multiples. I hope he recovers and has many good years. Hold him close.
I’m so sorry to hear this. Maybe you can break him out. I know I would want to.
I am so sorry, Doug. The nightmare isn’t getting old and getting sick. It’s not even dying. It’s being alone, surrounded by strangers instead of people who know who you really are, when you aren’t in pain, clad in a Johnny-gown and helpless. I really loathe this COVID stuff…Sending prayers to you and your dad.
I don’t know what to say. It sucks
I too am so sorry. I think issues like your father’s are more common than officials are willing to acknowledge.
My cousin’s father-in-law died about two weeks ago, alone in assisted living. Although my cousin and her husband lived only a couple of miles away, and normally visited frequently and often took him to their house for dinner or other activities, they were not allowed into the facility, nor to take him out to their house. So they didn’t see that he was not taking his medications or otherwise taking care of himself. Facility staff, even attentive facility staff, is not equivalent to family.
Several people at our church have had spouses or parents die alone in hospitals or nursing homes, prohibited from having spousal or other family visits in their last days or weeks. One man who died just a few days ago was allowed visitation by only one of his several children who live locally.
We know from many studies (I think I’m on solid ground here) that medical patients who have strong connections with family and friends heal more quickly and more completely than medical patients who are on their own. Visits by family and friends are important to medical recovery and healing.
So sorry! :(
These stories just break my heart.
My mother died less than a year ago in a nursing home and I have to say I’m glad she didn’t make it into 2020. She would have had an even more miserable end to her life, not to mention the stress and heartaches my sisters would have had being unable to do anything about it.
I don’t understand why it has taken so long for our healthcare facilities to design and implement equipment and procedures to allow visitors.
If that solution is masks and some sort of disposable gowns, why aren’t we doing it. We are six months into living with this virus.
Sometimes I think the issue is priorities. If not allowing visitors is an unacceptable solution to any problem in a healthcare facility, the problem to be solved changes to, how do we keep infected visitors from infecting our patients?
Jeeze.
What a story.
I’m hoping the answer to keeping the virus out of healthcare facilities will be here soon. In this story dated May 19, it says this:
This would be another area that could be helped by widespread availability of the cheap, fast antibody tests for Covid 19:
Visiting would be more difficult than in old days, but at least you and your siblings could visit your father. You could go to the nursing home and in an outdoor receiving area get a test (cost could be $1-$2, but the FDA and CDC might make it cost more). Results get back in ten minutes, and if you are non-infectious, you are allowed to visit. But first your father needs to get tested, too. If clean, he is taken in his wheelchair to the visiting room where you get together. You wouldn’t get to eyeball the state of his room for signs of proper medication use, but you could visit. After the visit the visiting room would need to be disinfected.
It would be sort of like visiting someone in prison. Maybe as more experience is gained, the procedure could be humanized a little more.
I learned about this in MedCram update #98. On Wednesday August 5 there is gong to a Q&A on YouTube with Dr. Michael Mina of Harvard, who is one of the authors of a paper advocating this testing method, and who suggests it may be a key to reopening schools this fall.
There are possible flaws in this idea (as always), and the paper in which it was presented had not yet been peer-reviewed back on July 20 when this video came out.
The key is a test that has been available for some time, but which had gotten a bad reception because it is only 50 percent effective. But that figure can be misleading, because it’s not a random 50 percent. The test may not be so good at identifying people who have had Covid, but may be very sensitive at detecting people who are infectious, which is what is important for being allowed to visit.
For a fraction of what lost in ineffective shutdowns we could have geared up protections for the vulnerable, more staff, big-time bio-hazard containment, and protective clothing that worked so that visits and some semblance of normal life could continue for the vulnerable. Instead, we tried a half-assed quarantine of the healthy on the theory that that would stop the spread and imposed one-size-fits-all policies while idiots knowingly sent the bug back among the elderly. And we are stuck with it because too many politicians, commentators and “experts” have a vested interest in what they have wrought.
Fifty percent effective was the wrong term. I think Fifty percent sensitivity is the correct term.
This is not the first instance of hospitals making their patients so miserable that people avoid becoming their patients. That’s what is happening right now. As it has everywhere else, demand for healthcare of all kinds has gone way down on Cape Cod. I have been receiving weekly e-mailed newsletters from our local hospital asking, “Where did our patients go?” The local hospital has “furloughed” a quarter of its staff, which of course has rippled out to the peripheral suppliers such as the labs and small clinics that are also furloughing staff.
Of course, some of the loss is due to people being simply afraid of being infected by the covid-19 virus in healthcare settings. But that fear is not the whole story, as these newsletters say. The local hospitals, doctors’ offices, labs, and clinics as far back as two months ago completed the retooling they needed to do to prevent the spread of this virus, and they have declared their facilities safe for patients and open for business. So that is no longer the problem.
The current problem is actually an old one that they have confronted before: How do we deliver care safely but pleasantly?
Obstetrics has gone through waves of change over the last forty years for similar reasons. Before the Lamaze movement in the 1960s and 1970s, mothers so hated going to the maternity wards of their local hospitals that they stopped going (not me–I prefer a hospital. :-) ). Not everyone, but enough did that the losses cut into the profits of the maternity wards. The home-birth movement took off, and a new field of midwifery took off with it. Today, the hospitals compete for mothers, and it’s wonderful. Family members are encouraged to visit, and the patients’ rooms are homelike.
When hospitals realized that they had to attract patients, when they realized that they couldn’t take the presence of patients for granted, they found ways to make the experience much more pleasant for everyone.
@dougkimball you have taken us all into your heart by publishing this very personal story. Thank you for sharing this with us. May God bless you and your father. It is a dirty secret of COVID times that the forced isolation of the elderly and the ill has created more pain and heartbreak than the disease itself. For all those that have died of this disease, there are the mothers, fathers, brothers, sisters, wives, and children, plus dear friends who have not been able to be with their loved ones as they suffered through their last breaths, Funerals are limited to a mere few and lives are buried with little or no acknowledgment of their accomplishments. The science requiring these rules may be honestly attempting to help, but it is inhuman.
I know a mental health professional whose mother is in a very fine memory care unit “run by Nazis” — and that’s a good thing. No one is allowed to visit. But, this MHP has arranged it with staff to visit her mother while sitting outside her closed window, wearing a mask. It is far less than ideal, but it’s something.
I hope you can work something out, Doug. Terrible times.
Mine, too.
It’s been my experience that hospitals are now dependent on having a family member nearby.
27 years ago my daughter was hospitalized with spinal menengitis. She was in the hospital for 10 days; my husband and I tag teamed being with her 24/7. Both my mother and my mother-in-law were amazed; they had had similar experiences with toddlers in the 60’s, where they basically dropped the kid off and picked them up when healthy enough to go home. My brother at the age of two refused to eat unless my dad fed him; he had to sneak up a staircase and have a friendly nurse let him in my brother’s room.
I in turn was amazed by their stories; it was me that spent time with my daughter and kept her calm, kept her from pulling out her IV and deal with the strangers who were entering her room poking and prodding and taking her temperature. How did that work 50 years ago without a family member as an advocate? I’m assuming a lot more staff per patient.
JY had a knee replaced in January and another in June. The difference between those two experiences was night and day. During the first surgery, I was in his room about 15 hours/day; getting him water. Going to the desk when he needed help I couldn’t provide. During the second surgery, when I couldn’t enter the hospital, he was dependent on the buzzer. According to him, whomever answered his call always answered with a “I will contact so and so, she/he isn’t available right now.” He demanded to come home just 30 hours after his surgery.
So from my limited viewpoint, the hospitals are now designed with the assumption of a family member on hand. And now that the family member is not allowed to be with the patient, the patient suffers.
I hope and pray all this is over by March as I have grandchild on the way. I’ve been present for the birth of the previous two grand babies and am sick at the thought of my daughter doing it without me this time.
Prayers to you and your family @dougkimball. This has been a trying time; I can’t imagine getting through it while dealing with health issues of a loved one.
Utterly awful, and you and your family are among the very many who have been separated on account of this mess. Your story is far far too common.
I see this sort of thing every day. Your experience is common in the age of COVID.
This is bonkers.
It breaks my heart, too.
Nursing homes, too. My father would have died a few years before his time if it weren’t for his wife and five children helping him survive rehab in a nursing home. One nurse in particular was insisting on overmedication, such that he was getting double-pain meds. We had words with the supervisors, who tried to do the right thing, but still, there were these problems. We then formed a rotating 24-hour watch to supervise his medications and care ourselves. We quickly found it wasn’t necessary to be there quite round the clock, but definitely most of the waking hours.
At one point, while we were just learning what was going on, my mother and I were on duty. A nurse came in to ask Dad how he was feeling, and he replied that he was OK. My mother, always on the lookout for her husband, interrupted about some of his ailments that she thought needed attention. After sort of easing our way out of that situation and the nurse left, I said, “Mom, be careful what you say! Some of them are looking for any excuse to give him more pain meds.” She immediately understood and corrected her behavior, as she had seen what happened when Dad appeared to be losing his mind in what turned out to be a state of overmedication. She had kept up a brave face while listening to him talk nonsense one night, but had been in tears when we left the building. I wasn’t too happy either, but when we told a sister of mine who knows more about these things, she immediately guessed there was an overmedication issue, and that’s when we started to intervene.
One problem was this small community had no rehab nursing homes, so the main expectation was that patients who entered would not get out alive. That fostered a certain mindset in some of the staff. Since then the same facility has built a separate rehab building, where there is a better chance for the appropriate care for rehab patients.
While we were going through that experience, with my wife and I making frequent 800 mile trips to Minnesota to do our tours of duty, I had a woman at work to talk to who had gone through a similar experience with her mother here in Michigan. She had had to supervise her mother’s nursing home care and medication daily in order to keep her alive. It was good for me to have someone to talk to who could pass on her experience and suggestions.
This woman was the one child in her family who was helping out. My father was fortunate to have five, with some of their spouses helping, too, directly or indirectly. It made me think hard about what happens to people who have no family like that to help out.
Now, thanks to covid, we are seeing the answer to that question on a large scale.
My mother passed in 2016 after spending three years in a nursing home. She was non verbal for the last two years and we worried about her care. Fortunately, she was on no medications, so that wasn’t something we needed to worry about.
My mom had five children, four sons and daughters in law and 15 grandchildren. She never went a day without at least one visitor. And taking the advice of others, we never had a schedule and no one ever knew who was showing up when, or for how long. Thankfully, we never witnessed anything to cause concern.
I have a rather caustic voice and going by my mother’s reactions, I’m convinced I could get through the fog that was in her brain even near the end. One of the last things I said to her (and she laughed) was that she was damn lucky she had had five kids. But I suggested in her next life she have 10.
Edited to add (the point): I miss my mother everyday. But I can’t imagine going through those three years, or even three weeks, with the current restrictions. It’s inhumane.
We had that problem as well. He is intolerent of opiates and they were given to him in Leesburg because he complained of hip pain, His hip was XRay’d, cat-scanned, MRI’d, even biopsied and nothing. His girlfriend thought he was going through some kind of pre-death psychosis (a symptom when say, lung or bone cancer matasticizes in the brain) but I doubted it. My sister, who has primary medical power of attorney, told them to cease the opiates and put him on tylenol. He was still looney when he was transferred to rehab, but after three days or so, his head cleared and now he’s lucid and his hip pain is controlled. You have to take an active role in your loved one’s care.