I don’t know how our family would get through this without my sister-in-law, a nurse, serving as patient advocate for my dad. And the situation makes me wonder whether a patient who doesn’t happen to have a daughter-in-law who is a nurse can get an advocate to listen to the string of instructions and explanations the doctors and nurses provide to tired, confused, and often, if only temporarily, cognitively impaired patients. For example, my dad cannot tolerate a certain class of medications. Yet every time he returns from the hospital to the nursing home, my sister-in-law finds that the most recent physician has added one of the drugs in that class to the list of his medications. So the discussion occurs again. A phone call from the nurse on duty to the physician must happen to explain that my dad won’t take that medication. The result is that it is once again removed from the list of medicines.

My dad grew up during a time when there was only one way of doing most things. And he grew up in a small town where everyone knew everyone else and everyone knew what the only one way of doing things was. So he expects that he doesn’t have to repeat his wish not to be given drugs in that class to every new doctor. He thinks that information should be in his chart and that new doctors will review his chart before determining what is best for him.

Instead, it appears that doctors are treating his symptoms instead of treating him. And since his symptoms are treated with a number of drugs, including those in that dreaded class, the medicines are added to the list without reference to his history.

Thankfully, my family has a patient advocate in my sister-in-law. What do others in our situation do?

My brother was diagnosed with Acute Myeolitic Leukemia at 51. He did not have a living will or medical power of attorney. He also didn’t have a will. There was always one too many questions to answer to complete them.

Until he was finally able to open his eyes and move his head to indicate that he understood what people were saying, his beautiful wife was left unable to take care of all the non-medical issues that my brother usually handled — paying the bills, getting information about just how high the credit card balances were.

It isn’t easy to begin thinking or talking about end-of-life issues when you are in the midst of the glory of living. Aging With Dignity offers an easy way to begin the conversation with Five Wishes. The 12 pages pose questions in simple, not legal, language to help think about answers regarding who should act in my place and what extraordinary measures I would like that person and health care providers to take or not take in the event that I cannot express those wishes myself.

Every state has it’s own guidelines for what constitutes a medical power of attorney or living will. Five Wishes meets the requirements in 42 states and us useful in all 50 states.

It doesn’t take a lawyer to get the process started.

–Simone de Beauvoir, The Coming of Age

Back in 1971 when Neil Young gave this performance, he was one of my favorite artists — still is — and I was about the same age as he was — 24, or at least so the song suggests. Being old seemed very, very far away.

I remember the first time I walked into my parents house after being away for several months when my first thought was “old people live here.” My parents weren’t home at the time, so what I noticed was the scent: suggestive of medication and bodily functions. I was brought right back to childhood when we visited my grandparents both at home and in the nursing home where they spent their final days: the scent of old people. It still seemed like my becoming old was very, very far away.

A few months ago, when we were removing everything from the family home to make it ready to put on the market, I brought home my great grandmother’s walker. Mom got it from her mother and used it as a stand for blankets at the end of the bed. After Mom died, it went into the basement where it remained until I had my husband take it apart to put into the back of the car for the drive back home. It sits now on our lower floor, holding aghans for us to use to get warm on the love seat while we watch TV.

Now, the first thing someone notices when they enter our house is a different walker, a modern walker, near the stairs. All the throw rugs that used to adorn the living room have been rolled up and put away. All the furniture in the living room has been rearranged to leave the middle of the room empty, to allow my husband to walk, with the walker, as he rehabilitates after having total knee joint surgery. And there is just a faint suggestion of the scent of bodily functions in the air as my husband recovers from the effects of the surgery, the pain killers that were prescribed to help him get through both the surgery and the physical therapy that will continue for at least the next three months.

I didn’t ever think I would get old.

This article from The Economist describes how happiness dips during the middle years of life but then trends back up in later years.

http://www.economist.com/node/17722567?story_id=17722567.

This video from TED provides one possible explanation for the dip. I appreciate the comment within it that we sometimes think of happiness as a binary function — either we are happy or we are not — while it is more useful to think of it as a continuum — kind of like the 0 to 10 pain scale hospitals use.

Finally, something to look forward to. . .

The November 2010 issue of AARP Bulletin included a short article about the fact that the State Department’s mandatory retirement age of 65 doesn’t apply to the Secretary of State or ambassadors. It also mentioned that Dr. Elizabeth Colton, who turned 65 in August of this year, filed a lawsuit in September 2009 calling the mandatory retirement age unconstitutional.

So I did a little digging. I knew that the mandatory retirement age for Foreign Service Officers is 65. And that the mandatory retirement age for Diplomatic Security agents is 57. And that there is no mandatory retirement age for Civil Service employees. What I found interesting is that nearly every mention of mandatory retirement ages referred to physical and mental requirements and the resulting stress on those to whom it applied – those in law enforcement, pilots and air traffic controllers, but no reference to any reason mandatory retirement should apply to diplomats. Just that it does.

The mandatory retirement age for Foreign Service employees was set at 60 by the Foreign Service Act of 1946, long before the passage in 1967 of the Age Discrimination in Employment Act (ADEA). Thirteen years later, the “new” Foreign Service Act of 1980, changed the mandatory retirement age to 65, restoring it to what it had been from 1924 until 1946. It would seem that thought was given to the fact that it was illegal to discriminate against anyone over the age of 40 in the workplace in the United States, but still it was acceptable to consider Foreign Service employment exempt from ADEA. And so it has stood since that time.

But Elizabeth Colton decided to challenge that exemption when an assignment she had been offered and had accepted at age 63 was withdrawn when someone realized she would turn 65 eight months before the end of that assignment. Her suit claimed discrimination based on age.

Another blogger, Diplopundit, highlighted the contrast between the Department’s treatment of Dr. Colton when she entered the State Department in 2000, at which time she was one of four new entrants featured in State Magazine, with the current circumstance. The article cited the wealth of experience Colton brought to State – as a journalist, university professor of international relations, Emmy-award winning television producer, magazine editor – which many supporters now feel State is too willing to toss aside. See thoughts from Walter Russell Mead of American Interest Online.

The timing of AARP’s short piece about Dr. Colton in the November issue is ironic, perhaps, in that the judge dismissed her case two months earlier, in September.

Another change in the FSA of 1980 was bringing the Foreign Service under Social Security. Before then, members of the Foreign Service were exempt from Social Security.

Should there be a mandatory retirement age for diplomats? Is 65 the right age? Should it be raised? In 1980, 65 meant eligibility for Medicare as well as full entitlement to Social Security. In the meantime, the age at which a person is eligible to receive full Social Security benefits has gone up, leaving diplomats forced to retire at 65 without the right to obtain full Social Security benefits. Isn’t that enough reason to raise the mandatory retirement age? As debate continues around proposing the age for full Social Security benefits be raised to 70, shouldn’t the mandatory retirement age for diplomats be raised to match?

No age is the right retirement age for every person. Some people want to retire at as young an age as possible. Others want to work for as long as possible. Too often I think mandatory limits are put in place to avoid the need to consider the individual differences. I don’t want to have to wait until I’m 70 to retire, but I accept that others both want to work until an older age and have the capacity to do so well.

I’ve only talked at one funeral before so I know I’m not very good at it. My wife Kathy is up here for support – please bear with me.

I’m Bruce and Brian is my twin brother. I say is because I find it difficult to use past tense when referring to Brian. Anybody who knows Brian knows that although his body may have given out, he is still with us here today in our minds and in our hearts. He will always be a better part of us.

Today we are celebrating Brian’s life on this earth and the fact that he is now in a much better place saying long-awaited “Hello’s” and ”I love you’s” to Mom and others who preceded him in death.

While visiting Brian in the hospital a couple of weeks ago, I asked him if there was anything I could do for him. I was expecting him to say he wanted his forehead wiped off or something like that, but instead he asked me if I would do his eulogy. It is truly an honor for me to be able to tell you a little bit about my brother.

Brian is one of the kindest, most generous persons I have ever known – at least on par with our dad in that respect. I know it’s a cliché, but Brian would truly give the shirt off his back if you needed it. We only have to look at everybody who came here today to say “see you later, Brian” to know how many lives Brian has affected. Those of you who were able to attend Brian’s prayer service last night heard some amazing stories that attest to his generosity and character. He will truly be missed. Dad – thanks for raising us right.

We grew up in a time when kids could be kids and our neighborhood was full of them. We’d do the minimum of chores it would take for Mom to let us go out and play – and play we did. We kids explored every inch of soil for several blocks around as we played army, tag, kick ball, built forts, camped out or whatever. We even investigated soil in the down direction when we attempted to dig a hole to China in the Franks’ back yard; as we dug we always thought we were getting close! It’s funny how I remember digging that hole but can’t recall how it got filled back in.

Our sister Joan fondly recalls the time she told Mom that she had always wanted a Raggedy Ann doll. Unexpectedly a few months later, Brian proudly presented Joan with a Raggedy Ann that he had found at a garage sale for a nickel. He had overheard what Joan had said and wanted to make sure she would have her doll. Joan still has that Raggedy Ann doll today.

Brian always enjoyed the outdoors and hunting and fishing and loved spending time at Toad Lake where they had a beautiful view – which you can see as the background in his video tribute. That love of the outdoors was undoubtedly stoked by family camping trips that covered most of the US and Canada.

Brian also looked forward to summer camp, be it church camp at Camp Emmaus or scout camp at Camp Wilderness. One summer at scout camp, one of our neighbors, Jim, and Brian were assigned the task of building a simple latrine out of logs. To use the latrine, one had to dig a small hole and leave a pile of cover soil for after each use. Brian looked at Jim and said “It won’t smell like a pile of roses!” Brian always had some comment like that that would just crack you up.

In addition to the outdoors, Brian enjoys playing games and is very good at throwing darts and playing cards. He’ll do whatever it takes to win – or, if necessary, not to lose. One time I was playing darts at his house and it actually looked like I had a chance for a rare win – only to see Brian hit the power switch with his next shot and shut the board off. He always looked forward to the weekly card game at the Snyders and he told those who passed before him to hold a chair at their table for him. Time to take your seat, Brian – it’s your deal.

Even though we may have worn the same clothes and sported the same Heinie haircuts as youngsters, Brian and I never really looked like twins. We won many bets over the years proving we really were twins. Free Beer! But to us, being twins wasn’t all that different. Heck, we had Jim and John across the street, Dave and Dan a couple of blocks over, and Barb and Cindy a couple blocks the other way. We kind of wondered what was wrong with the families who didn’t have twins!

And although we were twins, Brian and I were definitely different. Once we reached high school we were clearly going our separate ways with our own interests and unique sets of friends. Among Brian’s best friends were two other boys named Brian and Brian. It was funny for a while to say “Hey Brian!” and see all three turn their heads. It wasn’t so funny to the police officer who pulled them over and asked for their names and heard what he thought was a smart-alecky “Brian”, “Brian”, “Brian”.

After high school, Brian earned his Construction Electricity degree from Moorhead Tech and served his a​p​p​r​e​n​t​i​ce​s​h​i​p in western North Dakota – living in both Williston and Bismarck. Some of that time was spent with a beautiful young woman named Lori, but things weren’t ready to work out for them yet and they split up.

I remember going out to Bismarck to help Brian move out of an apartment. He had a few dirty dishes left but had run out of dishwasher detergent, so we decided to use some liquid dish soap to do the last little load. It wasn’t long before his small kitchen started filling up with soap suds; we just looked at each other and started laughing – then started searching for where we had packed the mop.

Brian completed his a​p​p​r​e​n​t​i​c​e​s​h​i​p​, became a journeyman electrician and eventually returned to the Moorhead area where he worked primarily in commercial new construction and remodeling – most recently with Dakota Electric. Brian wired my lake home and refused any payment – even after putting up with me as the world’s worst apprentice. Brian helped out many friends and neighbors with electrical work as well and always refused payment – he knew he’d get paid back some day. When one of Dad’s neighbors tried to give Brian a little something for his efforts, he just said “No, that’s OK. You helped raise me.”

Once in a while Brian would run into relatives like David or Matt when they crossed paths on a job site and even bumped into my son Brad when Brad was delivering appliances to a new apartment complex Brian was wiring. Brian often made service calls to the VA hospital where he would usually run into Aunt Myrtle or Uncle Bob doing volunteer work. He’d always say “Hi Auntie!” to Myrt. Brian knew Bob wasn’t doing well while he was in the hospital and whenever I came to visit, Brian would ask me how Bob was doing. A couple of weeks ago we lost Uncle Bob and I came back up for his funeral. I went to visit Brian in the hospital [at a time when he knew I was supposed to be dealing with things back home] and he looked at me and mouthed “What brings you to town?” I said “You do, Brian”. His next words were “How’s Bob?” – he knew something was up. He felt terrible that he couldn’t say “Good bye” to Bob. At least now he can say “Hi Uncle!”.

Brian and Cindy had a short marriage which resulted in Brian’s son, Corey. Corey’s a great young man and is currently attending college in Arizona. Brian is very proud of Corey and knows he will do well in life.

Several years ago Brian’s good friend Darrell passed away u​n​e​x​p​e​c​t​e​d​l​y​. At Darrell’s funeral, Brian ran into the same Lori that he had dated many years earlier. I remember Brian telling me that Lori was the love of his life and he had made a big mistake by letting her get away – and he wasn’t going to let that happen again. Brian and Lori rekindled their relationship and got married, adding Lori’s sons Erik and Alex to the fold. Erik is currently a senior at Moorhead High School and Alex just started his Freshman year. Brian loves the boys and expressed that he wishes he could see them graduate. He also wishes he could take them hunting and fishing again.

Brian and Lori also have one child together – Megan – who is in third grade at Reinertson Elementary. When Brian learned of his leukemia and prognosis, he said all he hoped for was to be able to walk Megan down the aisle some day. Although that won’t be physically possible, we know he’ll be there in spirit.

Brian was such a good friend to so many that several different families also claim Brian as their brother or uncle or son – he is that special. I won’t name them here as I know I would leave somebody out – you know who you are. The only neighborhood family member that may not have accepted Brian was the Franks’ dog Tobie. Tobie lived in his own little black​-​and-white world where either your name was Franks or you were the mailman. I think Tobie made each of us kids feel like the mailman at least once.

The recent record flooding in Moorhead brought Brian’s neighbors together to battle the Red River when they were initially told that their neighborhood would be sacrificed. They not only built walls that saved their homes, but they built strong friendships that made for a better n​e​i​g​h​b​o​r​h​o​o​d​. This year they planted a community garden which was being raided nightly by deer. Brian’s neighbor set up a game camera to capture the thievery, and Brian waited until he was away before he put on some paper antlers and proceeded to “make like a deer” in front of the camera. We’re all happy that Brian was able to have a great summer both at home and at the lake.

When I learned of Brian’s leukemia, I rushed to his side and was lucky to see him before they had to sedate him. Although he looked like a fish out of water trying to breathe with an oxygen mask, he seemed to be helping us cope more than we were helping him as he continued to make light of his situation – cracking jokes and teasing my wife Kathy. Brian was always looking out for everybody else.

After telling me he couldn’t believe how strong he could be one minute and how weak the next, he still wanted to arm wrestle. Ever since he pushed me out of the womb first, Brian has always been bigger and stronger than me. Although this could have been the one time I might have beaten him, I just couldn’t do it and he remains undefeated against me. I have a feeling if I had tried, I’d still be 0 and whatever.

After spending a considerable amount of time unconscious in the ICU, Brian moved out onto the floor but was initially unable to speak. As his communication skills improved, it became clear that there was one thing he wanted more than anything else – a drink of cold ice water. Whenever a nurse, doctor, nursing assistant, or therapist would ask “Is there anything else I can get for you, Brian?”, he would simply reply “Ice water” Brian never got that long-awaited drink. Our sister Sandra asked Brian many tough questions to help settle his affairs and even asked Brian what he’d like served after his funeral. At first he just shrugged his shoulders, but then he looked up and said “Make sure there’s a pitcher of ice water on every table”. Please make a personal toast to Brian as you enjoy a drink of ice water after this service. I’ll be making a silent personal toast whenever I drink ice water from now on.

Even under the worst of conditions and with a dire prognosis, Brian always said “Thank you” to the nursing staff and doctors. He knew that no matter how bad the news was or how many times they poked him, they were just doing their best to make him better and he truly appreciated every little thing anybody did for him. I’m sure if he was here today he’d say thank you all for coming.

During one of his last visits, Pastor Rick asked Brian if he was afraid of dying. Brian said no, he wasn’t afraid of dying – he was worried about what might happen to his loved ones without him here. Don’t worry, Brian – they’ll be OK.

We were all hoping that Brian would get well enough to undergo a bone marrow transplant. I was selfishly hoping I’d be a perfect match so I could be a hero back to Brian. Although I will never know if I was a match, I will – and I urge all of you – to register with the National Marrow Donor Program. Maybe together we can save a life some day. Brian would like that.

I love you Brian – I only wish I could have done more for you.

If we had tried to script the celebration of life that followed the viewing the evening before his funeral, we couldn’t have done a better job. The people who were moved to stand up to tell us about how my baby brother touched their lives had us in tears as well as in laughter throughout. Again and again we heard about how he loved to hug the people he loved, and that he was unafraid to tell us all that he loved us.

Even the weather responded with grace. While October in Minnesota can be cold, the weather the week we were preparing for my brother’s funeral was gorgeous. Sunshine and warm temperatures made it easier to smile and laugh amidst the many tears.

My brother never lost his sense of humor or his sense of humanity. Even before he could tolerate the speaking valve that allowed us to hear his speech, he spoke to us, challenging us to read his lips. This was all the more difficult as he followed the guidelines of humor by saying something unexpected more often than the expected. We had to rely on a spelling board which grouped the letters of the alphabet into four bunches. We pointed to groups to figure out how to narrow down the spelling of words we didn’t understand through lip reading. A lesser man might have given up trying to keep our spirits up. But my brother was a great man.

I love you, Brian. Have a great Thanksgiving feast with Mom, Aunt Laverne, Uncle Bob, all the grandparents, and the regular card players who went before you.

A student asked his Zen master to give him good news. The master replied, “Grandfather dies, father dies, son dies.” The student objected, saying he did not find this to be good news at all. The master explained it is always good news when the grandfather dies before his son, and the father, before his son.

My brother, my youngest brother, was recently diagnosed with Acute Myeloid Leukemia or AML. He went to the doctor on a Monday because he thought he had the flu or a bad cold. Instead of walking away with a prescription for an antibiotic, he was checked into a room after being told he had acute leukemia and that the doctors would need to do some tests to determine just which type so they would know how to treat it.

I had heard about leukemia before, of course. But I didn’t know how many types there are. All leukemias are either acute or chronic. Acute leukemia develops over the course of weeks or months, not years. For this reason his doctor told us that if they did nothing, my brother would live only two to four weeks. I had no idea leukemia could progress so quickly.

But knowing that a case is acute or chronic is just the first step. All leukemias are further divided into lymphocytic or myeloid. And these two types of leukemia behave differently in adults than they do in children. My brother is 51, not a child in age but younger than the typical age at which AML develops, typically over 65.

Even after determining my brother’s leukemia is AML, not ALL, more tests were needed to determine if a bone marrow transplant was necessary or if consolidation chemotherapy treatments would be sufficient. Now I don’t want to sound like I think any form of chemotherapy is a simple solution. In order to kill the bad white cells, chemotherapy has to kill all the white cells, dismantling the patient’s immune system. And that means the patient is at risk for the slightest infections. But a bone marrow transplant is a pretty scary next step because it can’t be done just anywhere. My brother will have to travel to the University of Minnesota for the surgery. And first, he has to get well enough for that trip.

All of this is making me aware of the assumption I have subconsciously carried with me — that death would come to our family in the same order as our births. Grandfather dies, father dies, son dies. I had even joked with my youngest brothers that they were going to have to put together the eulogies and obituary for me because I’m the oldest, so they’ll have to watch me pass first. It is particularly difficult to watch my youngest brother, 10 years younger than I am, the one I bonded with because he came home from the hospital three weeks before his twin brother had gained enough weight to come home, as he struggles with a serious health condition. But when I watch my father, I can only imagine how much harder it is for him.

While I have nothing but his appearance to go on, my guess is that he is among the many homeless in America.

According to an April 2010 report by the National Alliance to End Homeless:

That report uses the term “sheltered homeless” as a reminder that sleeping outdoors on park benches or in a doorway is not the only criterion for labeling someone as homeless. In the summertime in Arlington, Virginia, volunteers in the Arlington Street People’s Assistance Network (A-SPAN) Homeless Bagged Meal Program (I am one of them) prepare more bagged meals to serve in the evening at the two sites than they do in the winter. In the winter, more homeless persons find shelter for the night in buildings, not vehicles, getting their meals indoors.

As a child, I remember using the term “bum” to describe someone who looked like the man I watched cross the street. The stereotype then was that anyone who was homeless was either lazy, running away from something, or an alcoholic or worse – that the condition of homelessness was the result of poor choices by the individual. “They” brought it on themselves. Some may still choose to believe that stereotype, but the evidence indicates that there are single men, single women, children and families who live in their vehicles, in shelters, in public restrooms, or wherever they find protection from the elements and and other hazards. Now it is hard not to acknowledge that the primary cause of homelessness, poverty, can result from many different situations, most entirely out of the hands of those who end up without a home. Loss of a job, loss of a life partner, a serious medical condition – each of these can result in depletion of one’s life’s savings, then the loss of a home.

I don’t think I’ll ever consider myself other than firmly in the middle class. I’ll never be rich, if the measure of richness is solely money. And I will always consider the homeless person on the side of the road as my neighbor. We share the same space even if we don’t share the same circumstances.