Eldercare Lessons

My mom and dad are the only people I know whom real estate agents have dumped out of frustration. They looked at a lot of houses in the Annapolis area and then a few in Virginia, but nothing quite worked--no garage, not enough bedrooms, no basement, yard too small--and Tom and I eventually concluded that they didn't really want to move.

When the crunch came--when my mom and dad became unable to care for themselves, I realized that I had wasted a lot of time. This wasn't a matter of siblings being unable to agree on who will take care of mom and dad. I'm an only child. My dad had had a series of illness--all without me being there--that I should have added up to realize that when a man is in his 80s and has had a stroke, cancer, heart, hearing, and eye problems, it's probably beyond the point in time when he and my mom--who does not drive--should be expected to watch over themselves, even though they were doing pretty well until their 88th year.

Part of the problem was that they were doing pretty well, they were happy where they were, they'd spent nearly all their lives in the area, and the extended family was for the most part less than a hundred miles away. Wasn't it better to leave well enough alone?

Well, not quite, because as the days, months, and years went buy, things were changing just as they do for everyone in their 80s. They were slowly approaching a health crisis, and in this case it lasted for months before it turned fatal for my dad. During those four months, I was madly juggling house hunting/buying (including arranging for a loan), calls to doctors, hospitals, and nursing homes, and long talks with my mom, who was at home alone, on top of working a full-time job. In the course of all this, I learned the following things that I am applying to my mother's care and hope to be able to apply to my own welfare and Tom's when we get older. Those of you who read this might well have learned your own lessons while trying to care for elderly parents or other aging family members. I invite you to send them to me so I can add them to the list.

1. Many doctors do not consider elderly patients as deserving of the same care and consideration as younger patients. They will delay visiting your loved one at the hospital and be dismissive to you as a family member. "Well, what can you expect, he's 88 years old" becomes an excuse for the doctor's preference to do something other than give your parent the best care.

2. Nurses working night shifts at hospitals and nursing homes like peace and quiet during their shift, even at the expense of your elderly loved one. Let's face it, few people get used to working nights, especially women who have young children that require their attention, causing a lack of sleep. When these folks get to work, they want a quiet shift so that the stress of working at night is minimized. Old people often have a condition called "sundowning," where there days and nights are mixed up that ruin the tranquility of the workplace. If drugs will cause your elderly loved one to quiet down, then the nurses will see to it that they get the drugs, even if it means calling a doctor to authorize it and even if the drugs will complicate the overall treatment of what has caused the elderly person to be in the hospital. My dad was having trouble sleeping at night in the rehabilitation department of Union Hospital in Terre Haute. After complaints from the nurses, his rehabilitation doctor (not a neurologist, not a psychiatrist) was given halydol--an antipsychotic drug that I had asked them not to give him--AND DOUBLED HIS BLOOD PRESSURE MEDICINE. The next day his condition declined dramatically--he could barely move. I consider this one of several turning points that not only set back his recovery but directly contributed to his death.

3. Warnings that certain drugs can be fatal to the elderly (so-called black box drugs) are routinely ignored by medical professionals. If your elderly loved one is not sleeping at night, they will be given one of these hazardous drugs, most designed to treat severe psychotic illness--and you won't know about it unless you ask. Even if you tell the nurses caring for your loved one at a hospital or nursing home that you don't want black box drugs given, they might comply initially, but when they think you're no longer focused on the issue, they'll start dosing them out again after getting a doctor's permission.

4. Getting a home loan is not easy for the elderly, even if they have a lot of money in the bank and a steady pension income, and an impeccable credit record.

5. If you or someone you love is in their 80s, their chances of being "healthy" one day and dead the next are astronomically higher than for those under 80. If your loved one is 80 or older and has been hospitalized, expect a phone call with bad news at any time.

6. Your elderly family member may exhibit aggressive behavior of the kind you've never seen before; it is a natural but primitive response to change, so don't let it hurt your feelings. When he was in the hospital in Indianapolis, the nurses called the police on my dad because he had become combative. It took four physically fit men in their 30s to hold him down. Why did he get combative? Because he wanted out of there.

7. Nurses would rather have their elderly patients wear diapers or a catheter than take them to the bathroom. One of the standards for quality nursing home care is the percentage of patients who become incontinent while staying at the home. I'm pretty sure this is because the reason many of the elderly become incontinent because their toilet needs are neglected by the home's staff. My dad would call to be assisted to go to the bathroom and was ignored. His nurses had him in diapers, so they didn't have to worry about a messy bed, and helping a big man get up was a chore. I used to get calls from the nursing home complaining that my dad kept falling out of his bed or sliding out of his wheel chair. When I asked him why he did this, he said, "I know it's not going to hurt me, and it's the only way I can get their attention."

8. Therapists will use Medicare against you to avoid having to work hard to help elderly patients. The therapists at Meadows Manor East, the nursing home my dad was sent to when he was released from Union Hospital, found my dad to be hard to manage sometimes, so they dropped him as a patient. Twice. The first time the physical therapist told me that my dad was making some progress. The nurse all told me that my dad was making progress. But then suddenly my mom got a letter from Medicare saying that my dad was being dropped from therapy. When I confronted the therapists about it, they said that to continue therapy would be an abuse of Medicare, which would pay significantly more for my dad's care in a nursing home if he was undergoing rehabilitation as opposed to just custodial care. They claimed that he had not been making progress over a two week period even though every time I asked specifically about how he was doing in therapy, I was told he was doing fine. After my dad was sent to the hospital because the drugs Meadows East was giving him--the black box drugs--were causing him to be comatose during the day and crazy at night, he returned to Meadows East. The doctor prescribed therapy for him once again, but the therapists tried for one day and then called me to say it wasn't working out and that they had decided to drop him. One day. Now if they were right, then why did my dad do so well at therapy a week later at Fairfax Nursing Center in Fairfax, VA? He was making progress for weeks until the day he was hospitalized for pneumonia.

9. With any medical treatment your loved one receives, find out what type of follow-up care will be required and make sure it gets done. My dad had a tube surgically implanted in his stomach because all the medications he had been on had impaired his ability to swallow. The doctor who proposed that it be installed was worried that my dad would aspirate his food and get pneumonia. Unfortunately, in tandem with the installing of the tube was the requirement that mucus that accumulated over time in the back of his throat be suctioned out because he couldn't swallow it down himself. Mucus accumulates a lot of germs and normally it goes into the stomach where the acids there kill them. In my dad's case, the nursing staff failed to follow through on the suctioning, and that failure caused the germs to stay in the mucus in the back of his throat, where they proceeded to multiply and eventually get into his lungs and cause pneumonia, the very thing the stomach tube was supposed to prevent. I'm sure suctioning out mucus is not the most pleasant job in the world for nurses, and elderly patients come and go for a variety of reasons, so maybe they don't connect this particular failure with deadly negligence. For whatever reason, it falls in the loved one's court to make sure it happens.

10. You might be right and the doctor might be wrong, and the consequences of his error could be deadly, especially with the elderly, so insist that the doctor take your view seriously and prove that your wrong. When my dad was rushed to the Fairfax Hospital's emergency room, I stayed there with him until 1 a.m. or so to talk to the doctor. During our talk, the doctor said, "we need to find out what the source is for this infection." I said, "What about the back of his throat, maybe mucus has accumulated there since he can't swallow?" The doctor said, "If that were the case, he would be coughing more." In hindsight I should have said, "Why don't you look and see?" Twenty-four hours later, when my dad's vital signs dropped the first time, they did look and found a huge accumulation of very nasty stuff. An hour later he was dead.

(To be continued . . . )

Shifting Gears for the Holidays

I like cars, like my dad did. I don't know nearly as much about them as he did, but I know enough of the basics to make me conversant in situations where a diagnosis is necessary. My dad liked American luxury cars--Cadillacs and Lincolns; I like sports cars. From anywhere.

Sports car aficionados usually like to drive with stick shifts so they can have that special feeling of "being one with the car." I know how to drive a stick--Tom taught me when we were in college on an old white Ford sedan, because he was hoping that I would like driving a stick as much as he did. (The Green family grew up driving with stick shifts.) But as noted above, I had grown up with luxury cars, so I guess it was too late for me to absorb the thrill of guiding a car through the gears when I knew that if properly equipped, it could do so on its own, leaving me time to push the buttons on my GPS, floss my teeth, fiddle with my iPod, and dig through my purse to find my badge so as not to delay traffic going through the gate at work.

People have gears too. People work together best when they're all in the same gear, as if we all assume that working on a common task requires a common commitment of effort. Maybe one reason the holiday season is so nice is that we all are running at the same speed in order to shop, travel, decorate, wrap, cook, host, visit, etc., in the same short time period.

I'm always tempted to resist getting into the holiday traffic flow, thinking maybe I could just pull over and park for a while and let the pack go around me. Somehow those Christmas Eves spent with Jim and Tammy Faye Baker, them cooking and me wrapping at 2 a.m. while everyone else in the house had been asleep for hours, took a toll on me. Every year I think, maybe we could do a "destination Christmas"--spend a few days together in an exotic place we've never been before; let someone else do the cooking and dispense with the tree so that we don't have to worry about putting anything under it.

This year is particularly tough. For a sports car driver, I'm having a hard time finding the accelerator pedal. My mind reverts a lot to mental before-and-after pictures--one of a lazy boy recliner chair with an 88-year-old man in it and one in which the chair is empty.

But I am a sports car driver, and the pack is catching up to me. The giving season began at work with the Combined Federal Campaign, and the organizers for our office are always members of the under 30 generation that so many of my fellow baby boomers consider to be so self-centered. Amid the hub-bub of holiday plans is a special feeling of excitement--the anticipation of Inauguration Day, the change in our set of customers, and the growing conclusion that the President-Elect is someone special even in the context of his prestigious predecessors.

More personally though, the family is coming. Thanksgiving Day in Annapolis will be quiet for Tom, my mom, the dogs, and me, but on Friday, Dan, Sheri, and our granddog, Mingus, will meet up with us at my mom's house in Annandale, a place that is new to us as far as celebrating the holidays goes. Our Thanksgiving dinner will be Saturday and will feature ham, not turkey. How's that for flaunting tradition--or creating a new one? With a little luck, we'll translate some of that holiday energy into finishing off the last two major house projects--turning one room into a sewing room for my mom and another into a workout room for me.

I've been stockpiling gifts for birthday and Christmas celebrations with friends and families in December, including the one occasion when we'll all be together--Angela's birthday, which we will all celebrate at a restaurant of her choice in New York City and eat birthday cake and hang out together at Dan and Sheri's home in New Jersey.

With the plans ahead of me and the people involved in them, I don't think I'll have to worry about leading the pack, as I have often felt I had to do in previous holiday seasons. My days of relying on Jim and Tammy Faye are long gone. I'll do my share, but I think we'll all be in the same gear. No need to race in any case--this holiday season is a particularly long one, stretching into late January. It will give us all a chance for reflection, a chance to recognize the joys brought by both the pack and its individual members, and an opportunity to let our memories and traditions begin to refill empty chairs.

Eulogy for Arthur Edward Dowell, 27 January 1920 - 11 October 2008

After three hospitals and two stays in a nursing home here in Terre Haute over the course of about three months, it took a 12-hour non-stop cross-country ambulance ride to Virginia to give my dad another chance at life after a stalled recovery from brain surgery. He arrived tired but happy at the Fairfax Nursing Center at about 9 p.m. His face brightened when he saw me as they rolled him in. The next day, he started three types of rehabilitation therapy and steadily improved in each. My mom and I visited him every day, and although he would have plenty of times when his mind was not clear, we had many conversations about a wide range of things related to the life together that we were looking forward to, the house that he would be moving into, the status of the house in Terre Haute, and an assortment of other matters.

But amid all this good care, Death was catching up with us. My dad caught pneumonia and was hospitalized. The infectious disease specialist who contacted me to tell me they were going to give my dad a powerful new antibiotic told me that people in their ninth decade could appear healthy one day and die the next. And so that is what happened. My dad’s vital signs dropped suddenly early last Saturday. The hospital immediately called me to tell me that had happened but that his vital signs were back stable again. The next call I got about an hour later was that he was dead.

Although Death took my dad, I have no doubt that in his mind he was going to join his mother, his dad, and his four brothers. He had seen them. He had called to them. My dad told the nursing home staff in Terre Haute that his brother Firman had died even though no one had told my dad that Uncle Firman had died the previous week. And whether you or I believe in the Afterlife, we can all agree that my dad no long has to deal with feeding tubes, needles, IVs, catheters, walkers, and medications.

Those of us whom my dad left behind remember him as a vigorous, strong, yet gentle and kind man whose life was full and varied up until his last few weeks. He loved cars, and asked me repeatedly about the welfare of his ancient Ford station wagon when he got to Virginia. One time when I left his bedside, he told me to drive carefully. I replied, “By the way, I’m driving your Lincoln.” Without missing a beat, he grinned and exclaimed, “Well you better drive extra carefully then!”

He loved working with his hands. I remember many times as a child watching my grandfather working in his garden in Fontanet along with his youngest son, my dad, and then when my grandfather could no longer work the land, he and I would both watch my dad plow, hoe, and harvest. Not in any way would I disparage college professors, but I’m betting there are very few who have taught themselves plumbing, electrical wiring, and carpentry, and practiced those trades until they were 88 years old.

My dad loved the teaching profession. His success at teaching and mentoring his students and more junior colleagues makes a mockery of those institutions that have the “publish or perish” philosophy. Without a doubt his interest in international politics was contagious—he was the cause of my own interest in that field. His experience in World War II and his patriotism were all part of the reason international relations fascinated him. His knowledge of history was deep and broad. There were times when we talked that I felt like I was sitting in one of his classes. How I’d love to have that feeling again!

But most of all, my dad loved his family. Not a week went by while I was growing up that he didn’t go see his mom and dad at least once and usually more often than that. He brought his parents home into the 20th century, most notably from my perspective by helping to install indoor plumbing so there was no longer a need for those long icy winter walks to the out house. He genuinely enjoyed getting together with his brothers and sister and discussing with them the issues of the day, usually over a beer or two, often with a football game on the TV in the background, and sometimes rather heatedly.

When my grandmother and grandfather grew elderly, he looked out after them, chauffeuring them to doctors” appointments and making sure that they got the best care possible. Without my dad and my aunt, there’s no question that my grandmother could not have lived alone out in the country until literally the week before she died at age 98. He was my inspiration in so many ways and the way he cared for his parents represented the way I wanted to care for mine.

My mother and I knew before my dad died and we know it even more so now that he would have done anything to make us happy. I can remember many times when my mom and dad would visit Tom, Dan, Angela, and me at our home in Annapolis, Maryland, I’d begin to do some household maintenance project and the next thing you’d know, my dad was doing it and I was standing there watching.

Just a couple of weeks ago as my mom and I sat at my dad’s bedside in the nursing home in Virginia, she asked him if we was happy to be in Virginia and if he wanted to stay. He immediately and vigorously said yes, that they were starting a new life there. But then he looked at my mom with concern and said, “But if you don’t like it, we’ll go back to Terre Haute.”

And that’s what it was supposed to be for him—a new life. And in a way it was, because he was getting the encouragement and support in Virginia that he needed to recover and come home to a house he had never seen but that he had trusted me to buy for him. I am so thankful for that time I had with him then, his hand seeking out mine and holding it with his always-strong, warm grip. I could calm him when the confusion overtook his thoughts and encourage him to keep up the good work in his therapy. I could see how much he and my mother cared for each other even after 65 years of marriage. These were precious moments for me, and only child that I am, I want more. But if the loss of my dad to the hand of Death means that he has rejoined his mom and dad and his four brothers, then I am thankful for the peace that has been brought to him. His presence is still with all who knew him. He made the world a better place in his own way and on his own terms.

Homebuilding: Hurricane-Proof Gazebo

It's 9 November in Annapolis, Maryland, and warm enough to be sitting outside with my shoes off and a cashmere cape loose around my shoulders. But the important thing is where I'm sitting. We used to call it the "shelter by the water" and native Marylanders called it a crab shack, but now, with appropriate paperwork from Anne Arundel county and after spending a fairly large sum of money, it is an 8' x 11' gazebo on the South River (an arm of the Chesapeake Bay) supported by five white columns mounted on a clean, smooth concrete slab. Its ceiling is pegboard and its roof is a high grade medium gray metal, tilted at an angle that maximizes the waterview and minimizes the amount of time rain or snow will spend on it.

Its predecessor, which sat on metal poles in a rough cement slab had sheets of hard, semi-translucent plastic for a roof mounted in a wood frame. The cement and the poles remained in pretty good shape over the probably 20+ years of the old structure, but the winds that hit us from the west over the water during the winter took a toll on the roof, leaving chunks of plastic in our yard and gaping holes that undercut the shelter's utility in both sun and rain. It also had an impractically small homemade red brick charcoal grill built into it, which at some point we will replace with some snazzy propane-fueled thing. At one point the shelter also apparently had functioning electricity, and someday it will again.

That someday is much anticipated, not because of our desperate need to watch TV down by the water, but because the gazebo's electrification will mean that the renovation of our home will be complete. This will be the second renovation we have undertaken with our little water-front home. The first one turned an odd little termite-infested house owned by its 90-year old widowed builder who died in it (before having a chance to take his clothes out of the dryer) into a home for a mom, a dad, two kids and a dog.

The upcoming renovation has shifted from a two-phased effort to one big massive, expensive overhaul. Originally we expected first to expand the current one-story three-bedroom house to encompass the two porches that are largely unused and part of the current drive way, thereby expanding the kitchen, creating a foyer, expanding the family room, enhancing the closet and bathroom of the master bedroom, and adding a garage. The next phase would have been to put a second floor on to the house. Now we are trying for the whole thing at once, which will give us a huge five-bedroom house with outstanding waterfront views from expansive front and back decks, a sauna, and an elevator (for when my knees finally give out) that will take a year to build.

The fact that we have already spent a year or so in the design phase of the house is one of the many reasons that I'm so happy with the gazebo. It is the first step toward "Yes we can" in the process of completing the entire house project. Hear that, Anne Arundel County, which needs to grant us the permits to build (which shouldn't be a problem--it'll just cost us $$$$): YES WE CAN! Hear that, bank account? YES WE CAN!