DO NOT RESUSCITATE

When I first saw my wife Friday a bit after the noon meal, she was as lifeless as I have ever seen a person. She had slumped against the hall wall in memory care at Provision Living at Columbia. She was walking hand in hand with the RN director. A nock on the door to our apartment alerted me.

An oxypulse meter showed a steady red bar for pulse. 911 had been called. She was resting in tilted back chair. The pulse meter bar was full and steady. It vanished. It rose a bit. It flickered. It resumed a normal pulse. Her color returned to normal. She opened her eyes.

The ambulance arrived before the fire truck. “She Is coded to resuscitate.” But I had talked her into making that choice at Provision Living after we had our Power of Attorney papers redone a year ago. Were we doing what she really wanted?

When I got to the front door on my way to our car, the ambulance was still sitting in the drive. An EMT person from the fire truck got into the ambulance. I got into our car. All three vehicles headed to the Boone County Hospital, 5 miles away.

My wife’s heart monitor in the ER showed irregular normal pulses and others that were covered with fur. Her heart beat ranged from 50 to over 200 in the emergency room. Over the next 12 hours the fur disappeared completely.

The EMT person stopped by the ER to say that a defibrillator had been used in the ambulance before they headed for the hospital. Another pang of conscience. Were we doing what my wife wanted? How will she be after resuscitation?

One copy of our directives and POA would not download from a secure vault. Another would not show directly on the screen. Another could not be located on the Internet or on my computer. Boone County Hospital printed out copies dated 2004 (12 pages) and 2015 (5 pages).

Monday afternoon we were home again. The director of Provision Living explained to me that my wife did have defibrillation to convert her heartbeat from a none blood pumping flutter to normal. Her heart had not totally stopped pumping. A do not resuscitate (DNR) order would have had not effect as she had a shockable heart rhythm.

Although defibrillation is used in resuscitation the process is only called resuscitation if the heart has stopped beating, but may still be fluttering a bit. This requires a judgment call. Current emphasis is no longer on getting the blood flowing again, but to also result in little or no brain damage.

The main factor seems to be time. Defibrillation within about 5 minutes yields good results. This happens in the hospital on monitored patients. (My wife hit the CODE button Sunday and 6 people plowed through the door in about 2 seconds in preparation to do resuscitation if conditions warranted it and a DNR had not been posted.)

Missouri joined a majority of other states in 2007 in using an OUTSIDE THE HOSPITAL DO-NOT-RESUSCITATE ORDER (OHDNR). This recognizes the fact that what may be successful in a hospital may not be outside the hospital. The novelty of the order is that the last paragraph allows the person or representative to cancel the order at any time.

Defibrillation is not resuscitation (but can be a part of the process If the heart has stopped). Defibrillation is now part of modern medicine inside and outside the hospital. If defibrillation is delayed too long it becomes resuscitation, when blood flow is sufficiently reduced long enough.

The DNR order then applies only when the heart and brain have been severely stressed to the point that brain damage can be expected.

The following now begin to make sense. I will change my choice on resuscitation at Provision Living to DNR. It will take the assistance of our family doctor to change my wife’s choice to DNR.

“Electrical therapy for the purpose of this guideline encompasses all care necessary for defibrillation during cardiac arrest on all patients with ventricular fibrillation (fast irregular beat) or pulseless (fast regular beat) ventricular tachycardia (that yield little or no blood flow or pulse).” (AARC Clinical Practice Guideline, 1995, Defibrillation during Resuscitation)

A Critic's Assessment of Our Approach to Cardiac Arrest

“”What we do know is that untreated ventricular fibrillation will deteriorate to asystole (no discernible electrical activity on the ECG monitor, “flat line” on monitor) over a period of minutes, and probably more rapidly in patients with more advanced cardiac disease.”” Gust H. Bardy, M.D. N Engl J Med 2011; 364:374-375January 27, 2011DOI: 10.1056/NEJMe1012554 (The relative value of CPR and defibrillation makes for interesting reading.)

Managing CDs as an Annuity

Buying an immediate pay annuity that fixed the interest rate on current historically low rates for the next ten years bothered me. CDs can fix interest rates from one to five years and take advantage of rising interest rates.

Chart 31

Chart 31 shows the interest rates for five CDs worth $90,000. The other $10,000 is in the bank to pay current expenses out of a $100,000 pot; that annuities divide into ten parts plus the expected compound interest ($10,823 per year payments).

Chart 32

Chart 32 shows the interest earned by the CDs over a ten-year period corresponding to an annuity. I found the “2%” CDs actually earn an average rate of 0.82% over 10 years.  Over five years, that would be an average rate of 1.64%.

Chart 33

Chart 33 ladders the five-year CDs. It produces the same total interest as not laddering. There is a shift in the time the interest is earned. The jumbo CD earned 80% of the interest in the first five years; the laddered CD earned 75% in the first five years. Therefore you ladder when expecting higher interest rates and start with a jumbo CD when expecting lower interest rates.

If I were to reinvest the interest at twice the 2% rate rather than spend it, the jumbo CD scheme would yield $71 more over laddering for the ten-year period. This is not practical but does show again, the earlier you invest the more you make.

You can always cash a CD. Annuities are binding contracts for their duration. Until this month, I did not know of any insurance company offering a free liquidity rider. It would let me take out part or all of the remaining funds in the pot. There is a catch. I will get the “discounted” value of those remaining funds.

Chart 34

After several emails and telephone calls I found out what this means. Chart 34 shows the compounded interest value of $100,000 in ten years ($108.230). The insurance company holding the annuity could discount that value (the Future Value) along the very same route (0.82%) that created it (blue line) IF it would settle for the same CD rate of return (1.64%). It will not do that nor tell me what the discount rate is until I ask to cash the annuity in. The rate will be set at that time.

[The CD rate of 1.64, on Chart 34, turns out to be 1.59 with an annuity. That 0.05% is the difference between the annuity compounding each month and my CD model set up on annual payments. The annuity is more efficient. It needs less start up money.]

Chart 35

I like Chart 35 better that Chart 34. Chart 35 shows the cost of either cashing in an annuity or selling the payments to an annuity buyer. The new free liquidity rider seems to follow the red line. Selling the payments seems to follow the green line. I would be more likely to sell a lottery win of $100,000 for $65,000 than an annuity.

Chart 36 shows what happens with CDs if half the Present Value (about $60,000), after the end of the fourth year, is withdrawn ($30,220). This is one year before the five-year CDs mature.

Chart 36

I cashed the jumbo CD with a penalty of $500. I bought five new $6,800 CDs of different durations to continue the annuity model. That left $30,220 to withdraw. The net cost $1,337. This same operation could have cost between $15,000 and $27,000 with an annuity (Chart 35) unless you are good at negotiating.

The financial market Is very competitive. The stock market is very unpredictable on the short term, but is predictable on the long term. I see little difference between immediate pay annuities and CDs under stable conditions and there is absolutely no need to cash in or sell an annuity. Buy an annuity before interest rates fall and enjoy a steady cash flow. Buy CDs when interest rates are expected to rise and you manage the CDs.

We bought our annuity with the house sale money at a low point in the market. It covers my wife’s medical bills for ten years when added to my Missouri state pension and social security. The cost of residential care may remain fairly stable with the decrease in the number of people turning that age in future years.

Again, if there is any question about this post, please comment or send me an email.

Residential Care Transportation

Residential Care Transportation

One of the most common items marketed with residential care is free transportation. My wife’s trip to the emergency room, the first month we were at Provincial Living at Columba, in an ambulance, cost us $200 to get there, and a taxi fare to get back.

Last night about 8:00 pm, the resident nurse, a residential care person, and I had a conference on what to do with my piercing earache. It was Saturday. An ambulance would be $200, or a lot more if the insurance failed to pay because the ER determined that the earache was not an emergency.

Drivers are available during the day and by previous arrangement to almost any event or purpose. They were in no way letting me drive my self.

That was something new. What do we do when we cannot drive? And when do we sell the car because it is a luxury we no longer really need? A year ago Columbia, MO, and Honolulu, HI, had the highest taxi prices in the country.

Columbia, MO, now has Uber. I downloaded it at noon yesterday. I played with it a bit. This morning I clicked Uber and found it already had me connected up with a driver sitting about a mile away. The fare was $5 to go from somewhere near here to the Boone Hospital (so I thought). I could not find the cancel button again. The car started moving on the screen. I turned Uber off and then back on. The car was closer.

I had ordered my breakfast, so I went out front to see if a Volkswagen Jetta had arrived. The concierge also watched. No car. I ate breakfast and returned to memory care. I explored Uber a lot more.

The trip history was from 522 E. Broadway (green dot) to 200 S. William St. (red dot). This was a different driver from last night, who I though I had cancelled in five minutes (and did) going to Boone Hospital. (Trip history: 301 Tiger Ln to I-27 N Stadium Blvd)

I later found a message, “7:22, Here Main Entrance.” Cancellation charge $5.00.

The trip I ordered, and cancelled yesterday at noon, and the trip that “just happened,” and I did not get cancelled this morning both have flaky trip histories. Each trip is about one mile long. The two trips are about three miles apart and much further from Provision Living. Whatever I did yesterday rattled Uber’s brain.

I just now clicked UBER to see what I did to receive a $5.00 refund, and the address 1800 Chapel Wood Rd is showing in the SET PICKUP LOCATION window. None of the trips or this address included 2333 Chapel Hill Road where we live.

Click the three horizontal lines in the upper left of the screen for help. Then click HELP. Then click  “Report an issue with this trip”. Then click “I had an issue with my fare.” Then click “I was charged a cancellation fee.” And see “We’ve credited your Uber account”.

Click the three horizontal lines for help. Then HELP. Then “A Guide to Uber.” Then “Taking a Trip”. Then “Cancelling an Uber ride”. Read carefully.

The software works. You can actually contact the driver by phone or email. You have five minutes to find out if the service is free of tobacco smoke and air fresheners or cancel and click another driver.

One of the RAs in memory care has a husband who switched from a smoke free taxi service (we did find one in Columbia before we moved here) to drive for Uber. He figures that Uber costs about 2/3 the cost of a taxi.

Uber gives you an estimate for a trip. Prices vary with the demand for service. Higher prices on busy times. At 3:05 the estimate to Boone County Hospital is $10-$14. “Pickup Time is Approximately 14 minutes . . . 13 minutes . . . 19 minutes . . . 15 minutes . . .” A map shows the trip. Now is the time to click “REQUEST uberX” and be ready to cancel if things do not look as expected. Hold down the cancel button until confirmation is requested.

http://www.Taxifarefinder.com gives a good estimate with a better map for Uber but nothing for taxies in Columbia. Google (numbeo.com/taxi-fare) to get estimates for taxies in Columbia, MO. [Enter Columbia, MO at top of screen]

At $25/round trip, our car insurance alone would pay for more than one trip a week. Day trips would require a car rental. Scheduled Provision Living trips are free to shopping centers, medical appointments, various attractions, and even (weather permitting) to the St. Louis zoo.

Enterprise will pick us up and drop us off for $40 a day economy and $45 a day for a car just like ours, a Chrysler 200C, as a one day rental. I need to renew my driver’s license in November. I will be 86 on December 6. [Done for 3 more years.]

As long as we have the car and I can drive, I can believe I am a free spirit (independent living second person) guest at Provision Living. I am not yet one of “them” but an observer of three developing communities that share this gigantic building.

I share a table in the main dining hall at noon near the windows where we look out to the North at the forested bank of the Missouri River through the windows of a tourist boat tied up for a spell (heavy rains) or grounded on a mud bar (no rain).

With enough tai chi and time in residence, time stretch’s and shrinks. Toss in the History channel and you can be any place and at any time. I think of my time again on the USS Billy Mitchell troop ship in the Pacific Ocean, where it was the flu that brought me to grief rather than an earache.

Individual Fitness Program

Several muscle groups contribute to my back pain. Each needs to be treated appropriately. Whatever that happens to be. The only way I know is to try working with them to find out, with an instructor watching. 

Last week I started reviewing “do in bed exercises” I learned several years ago. I found some I could still do forever. I found one (a version of planking) that I could hardly get out of, it hurt so bad. I found one that markedly reduced my back pain.

Exercising to replace the normal activities in our lives that residential care is now replacing, needs specific activities that are fun (games and skill building) or that contribute an easily identified feel-good response or training effect. The training effect can take up to 2-4 weeks. 

Normal activities keep us in shape because they demand our muscle groups work for extended periods every day. If these maintain our strength and stability we are safe. Otherwise we need a few exercise periods to help keep in shape.

In residential care we need many more exercise periods. To mimic normal activities, we need to periodically tuck these little exercise periods into our daily routine (use the stairs rather than the elevator, if you have that choice).

Now to design an individual activity or fitness (feel good) program for each person, that to a needed extent, restores their neuro-skeletal-muscular system. It must be something the resident wants to do and can see positive results. It must provide the needed instruction to try something new to replace old normal ways.

Residents have the time to participate, as they no longer need the time for former normal activities. We need to replace housekeeping and working with activities that maintain our strength and health. This can now be done in valid ways (the gym and training) rather than as a token (the original fitness room).

This is a lot easier to write about than to actually do. My first attempt was to use the marching in place exercise in the morning while watching TV to warm up and clear my head (10 minute minimum). Add a few standing on one foot exercises for balance. Fill out a 30 minute period with tai chi and yoga stretching exercises (standing, seated, and lying down).

Each hour at the keyboard needs to include a 5-10 minute of exercises that I have learned to do (if only I could remember them). This is very important for my back and general posture. I have now gone over two hours this morning without stopping or doing the wake up session! My back is telling me it is time to get up and do something I should already have done.

[I ended up going to the gym for 30 minutes. I checked out the heart rate meters on five machines. They are as delicate as the ones at the Columbia ARC. They start with a high false reading and eventually settle down to a reasonable value. My $25 pulse oximeter works as well, but I must remember to bring it!]

Yoga and Muscle Groups

A couple of weeks ago I had an interesting surprise. Most surprises are a sharp jab in a newly detected or old muscle group; after which it works better. This time I saw double to my right side. 

Full Carpet Pattern

For years I have had the impression that a car was sliding over to my right side. If I turned my head, there was no car. Going farther back, I walked through the narrow tobacco smoked office halls in the New Science Building with one finger on my right hand held out to detect the wall before I bumped into it. I doubt if anyone knew how unstable I was.

We were seated in tai chi class working on a yogo eye stretching exercise.

Look straight ahead. Then only move your eyes. Pause 2 seconds after each move.

1. Look up. 2. Look down.

3. Look left. 4. Look right.

5. Look up and right. 6. Look down and left.

Starting Phantom Spot Location 

7. Look up and left. 8. Look down and right. Hold in this position.

A dinner plate portion of the surface is displaced up and to the left.

It slowly slides down into the correct position. Relax.

I write about this as one example of the value of exploring all muscle groups. In this case I have a set of eye muscles that are way out of balance, but never knew that. There are even exercises to correct far and near sightedness as well as stigmatism, if you are willing to stick with them the weeks and months that may be required to rebalance the muscles that control the shape of the eye ball.

Fitness and Strength

[The chair on the left is for chair yoga. It is designed to keep you sitting up tall and straight. It works. It is the most uncomfortable thing I have ever sat on other than a bicycle seat. I no longer have the padding down there to be comfortable. We play tai chi in the stuffed chair with arm rests. Some people almost go to sleep. Similar chairs are used in the dining and activity areas.]

The fitness program at Provision Living at Columbia has now developed into physical therapy, tai chi, chair yoga, and strength training in free daily classes and open gym with an instructor. Individual workouts can be done in our apartments and the gym after necessary instruction. (The staff from the paid physical therapy and occupational therapy conduct part of these classes.)

I have learned some common rules that make exercising safe and productive over the past three years. There is no need to waste time and money on activities that are not productive and can even be harmful.

This all started for me on an early spring day in Walmart before we were gardening. I squatted down to see something on a bottom shelf and could not get back up! I called for my wife to push the cart over so I could climb up on it. I then invented an exercise that mimicked standing up from the floor with the aid of a support. In just a couple of weeks, I could stand again without the support. Walking a mile a day seemed to have no effect here; different muscle groups.

Physical therapy classes practice muscle groups needed in common body movements with an emphasis on fall prevention.

Tai chi and yoga are stretching exercises that start with your present abilities. If an activity hurts, stop. Don’t make matters worse. Hold the position for your body to “catch up” (stop hurting) and then relax.

Strength training is a scaled down version of the “grunt and grown” we all associate with gym exercises. Now the emphasis is on maximizing strength rather than growing muscle mass (slow relaxation rather than maximum effort).

All four approaches to fitness involve stretching selected muscle groups. Physical therapy practices common body movement. Tai chi and yoga can select one muscle group at a time including those we rarely use.

It was with tai chi and yoga that I discovered muscle groups that were the cause of my severe back pains. Then stretch to the maximum or until it hurts. Stop for a few seconds. Relax. Repeat 3-5 times. Go to the next exercise.

[The key to success is to fully stretch without hurting, pause several seconds, and relax. Just gliding through the motions does not work.]

We do not learn to play the piano by repeating the same 4 notes endlessly. We learn by playing music. Tai chi and yoga have hundreds of exercises imbedded in stories (music) with strange sounding and impossible to remember names.

It still amazes me how effortlessly these movements can produce the effects they do. I can now do most of these (stretch) until my muscles tremble without hurting. In the past week my back pain has been reduced to a numb spot on the lower right side. That is how this back pain event started about five years ago.

Strength training should increase my strength and reduce the muscle trembling. Residential care eliminates the exercise found in normal daily household and gardening activities. Periodic practice in open gym and in our apartments should replace these activities with an activity that also fills time for many people.

Medicare Drug Charges

Each Medicare Plan is also associated with a collection of pharmacies. Each pharmacy must find drug suppliers. Plans can rank the same drug in different tiers, related to generic or brand name. Drug suppliers can ship in different amounts. The same drug in the same amount can have a different cost.

Annual Premium and Drug Cost

I charted 2017 drug costs from eleven pharmacies, in area code 65203, used by the three HMOs in Boone County, MO, for two drugs I use.  The annual premium and drug costs range from zero for Essence to $600 for Coventry and AARP.

Full Cost

The full cost for each plan (Medicare and you) also varies. Coventry moves the most money and ARRP the least. Essence is about the average of the other two. 

The portion you pay is fascinating.

Portion You Pay

You pay zero with Essence as Medicare pays the entire amount. AARP has you paying about half the costs. However half the cost of a lower full cost rate ends up pricing AARP and Coventry annual premium and drug costs the same.

Essence is performing the same service as the other two with no premium charge. Shipping an unrestricted amount of pills rather than a 30-day supply reduces shipping and handling costs (but reduces the option for a profit factor).

A savings of about $600 is made by using an in-network pharmacy (CVS Pharmacy and Schnucks). The remaining variation must be in the deals between Medicare, drug plans, drug suppliers, and pharmacies.

Medicare.gov must be searched each year to find the pricing for the next year for plans and for drugs. Users can pick the best plan(s) and hope their drugs will be included. Medicare.gov puts all of this information in one spot. 

Again, print out the range of plans and pharmacies you may use. Then find an agent or broker to pick the best one for you for next year. The old time habit of picking a company for life is no more. It may not offer the plan you want for next year. Medicare.gov works well after you become familiar with using it and you get all the needed information in hand.

Medicare Annual Election Period

A Medicare broker, Vice President of Senior Benefit Services (SBS) located here in Columbia, MO., presented a meaningful program at Provision Living last week. I am writing this so I do not have to remember how to do a complete review of Medicare policies each year. It must be done each year.

Once again knowledge is power and money. We went from a $11,000 per year Medicare insurance premium to zero a year ago (see 14 March 2016 post). We planned to stay with the same company in 2017, but cost is just one item. There are a number of others that can all change from year to year, including the company dropping coverage in our county. It would be nice to have a simple way of making this annual review.

Google yielded nothing I was looking for about brokers. I eventually found eHealth Medicare that is close to Medicare.gov but it did not list our Boone county 5-star HMO. Healthmarkets seems to be an incomplete version of Medicare.gov but also sells policies.

Medicare.gov lists all the companies, plans, and prices, but does not sell anything. Drug comparisons are flaky unless the compared companies use the same drug providers. Premiums, maximum out-of-pocket expenses, and drug expenses remain the main differences for residential care residents [catastrophic expenses].

Essence Health Care, Boone County HMO, for example, has zero premiums, zero drug expenses and a maximum out-of-pocket expense of $2,900. Is this the best deal for 2017? It is the only five star company in Missouri. It provides the same services as the company charging $11,000/yr, in network, in 2015.

My brother’s insurance company hired a broker to optimize its services. Insurance companies are willing to pay experienced people to find the best fit in the current Medicare market.

In summary, a real Medicare broker (licensed to represent a full range of options) costs you nothing to review the year’s offerings. Print out a list of companies and policies in your county from Medicare.gov; so you know the full range of options.

Offering plan F but not plan G, and omitting HMOs removes low cost options. Most companies in Missouri pay a top commission of $443 per each new advantage policy sold (CMS.gov, Agent Broker Compensation). A commission is earned only if you change companies or policies. Check with your current agent.

We must do this every year as Medicare is as much a political process as a rational business process. Pick bottom dollar premiums; lowest maximum out-of-pocket expense; all doctors, hospital and drugs in network; and top star rating.

There is no guarantee that your 2016 policy will be offered in 2017. My brother’s broker split their coverage between two companies to obtain the best price for prescriptions.

Fitness Room to Gym

It is October 12 with a cold morning rain. Lawn, garden and flowerbeds will soon be asleep. We totally missed working in them this summer. This has not been a problem for my wife. It is a major problem for me.

I now weight about 5 pounds more than when I graduated from high school. And that 5 pounds is right around the belt line. I can still walk several miles without a problem except my legs get tired. There is in general, a lack of strength I formerly had.

As an example, much emphasis was placed on getting up from a fall. I questioned how we get down to the floor in the first place. So I practiced, as I learned to do with home exercises that mimic the real thing. I designed a fall like my wife and I often have working in the flowerbeds. We tip over forwards, to the side, and backwards when we loose our balance or get a foot entangled in something.

I squatted down, reached back to catch myself, and hit my head on the carpeted floor. My feet were straight above me. Wamp, my hips hit the floor. This was not a soft roll as in the garden. I learned two things: I had lost a surprising amount of strength and I could get hurt if I did not do something about it.

Original Fitness Room with
 Treadmill and Bicycle Removed

The originally designed exercise room at Provision Living at Columbia held a treadmill across the window and a bicycle with a TV on the wall to the left side of the space. I would label the room as standard issue in residential care design for assisted living (marketing requires an exercise space). The vending machine is the first item to convert the space into a community store.

Theater Set for Exercise Class

After a few months the stretching exercise classes moved to the chapel and the theater. Both assisted living and memory care residents shared the same sessions. The lower floor memory care unit we live in is now full. The two groups of residents now have independent exercise sessions more fit to their needs.

Theater and Former Chapel

The exercise program for assisted living, developed into physical therapy, tai chi, and chair yoga, in the theater. Strength training was added when the gym was installed in the chapel. “Stretching exercise” has now been reduced to “exercise”.

Right Wall

Left Wall

Back Wall and Storage

Open house for the gym was yesterday. An original token offering has now developed into a full, individualized, exercise program with emphasis on learning to do, within each person’s ability, exercises that can be done in our apartments as well as during open gym time.

The new director of all the exercise programs introduced himself as, “the guy who makes exercise fun”. If the classes were not fun, no one would come back.

I of course am already a true believer. I have gone from barely able to walk and intense pain, to walking normally upright with little or no pain. My shoulders and hips are both free moving and entirely pain free for the first time in several years. And most of this was done with stretching exercises under the direction of observant and experienced instructors, who provided immediate feedback on doing things correctly, to get the maximum benefit [and avoid damaging effects].

Fitness room to stretching exercises to exercise to gym show a mixture of views of the same thing and of different things. Most people here have a totally inaccurate view of the exercise program that is currently envisioned with the addition of the gym.

I did when we arrived. The mental aspect is as important as the physical. It is 4:25 pm and my back is pain free after chair yoga this afternoon (1:30) and a 1.5 mile walk out to Twin Lakes on the County [Poor] House Trail yesterday. 

Visit or Visitation

We visit one another in our homes. We make a visitation at care facilities. There is something different between the two. On a scale of 10 to 1 we progress from fully alive, healthy, and happy to only a spent form.

When visitations occur in our homes they have house rules just as in care facilities. The first party is doing great, the second not so great, from one point of view. In reality, both may be doing great at their individual stage of life.

I have struggled nine months trying to bring the two views together without grief and tears. I got six invites emailed this week. What can visitors expect? What helpful results can come from visits to all three parties?

In the past 24 hours my wife has lived in a wide range of worlds. From only responding to a residential assistant (RA); to periods of agitated keepsake sorting; to going to bed on her own; to being lost, and for a moment not wanting to stay, until we returned to our apartment and she saw her keepsakes.

My older brother and his wife visit us each Sunday afternoon. We have worked out a system. We meet in the activity area. If my wife is fully engaged in something she may just wave back. If so, we sit at a table (at times with a puzzle she can help us with) until she comes to us or an RA selects the opportune moment to direct her to us. Please see the prior post on her three “no”s.

The greeting. This we learned from the Home Instead caregivers two years ago. Arms wide open, “M__ how are you. I am H__. I am so glad to see you again.” Then a big hug, and sometimes a kiss. This continues at Provision Living.

You and the items you bring are now her memory. Or you can review the yearbooks or the family reunion books with her that we have here.

We all have to eat. We can use the main dinning hall, or a memory care activity room table across from their dinning area (the unit is full). Breakfast is from 7:00 to 10:00 cooked to your choice or 8:00 to 9:00 in memory care.

The noon (11:30 to 1:00) and evening (4:30 to 7:00) meals are from menus. There is about a 15-minute wait for special items like a hamburger or BLT.

With the exception of a meal, be prepared for a visit from 15 minutes to an hour. On good days my wife can have a good time with one or two persons. Be prepared for the pauses she needs to respond.

I can tolerate visits by knowing she can live happily in her world. She does not have to “live up to former standards”. She can be who she is now and still enjoy sharing who she was then. Dementia is a disease, not an embarrassment.

You will be far ahead of the families who approach memory care with dread only to find their family member thriving in the following months.

No NO NO

After nine months in residential care, my wife’s behavior has stabilized again. She has also been using the rivastigmine transdermal patch for a few weeks. 

The behavior of over dressing that first occurred over two years ago has returned: double socks, double pants, and triple blouses. This now occurs after several weeks of dressing with little assistance.

Over two years ago I learned that “no” was conditional on the state of her “agitation” or the worries, as we then called this state. Just wait 3 – 5 minutes and repeat. Usually after 3-5 attempts the “no” became “yes”.

Now there are three forms of no. The first is a soft “no” with no change in behavior. She continues on with what she has in hand. The second is a clear “NO” emphasized with her traditional right hook that never touches anyone or anything. It often includes that raised eyebrow that silently controlled our kids.

The third “NO” includes a teeth-clinching grimace and a blow to the person involved. The stimulus is touching or attempting to remove something she is working with or is near but has not finished working with.

New employees over the past few weeks now ask “Miss M__, do you want to . . .” or “M__, can I take . . . “ and stand clear for the answer. Hitting has stopped.

For months I thought that short commands needed to be delivered in a rather clear and demanding voice. Asking a question for her to respond to seemed a waste of time. Now even the most soft-spoken residential assistant (RA) can get M__ into the shower or bed in a few minutes.

Last night I finally had an RA confirm the art of distracting and redirecting. There needs to be a break in attention. At that moment she can respond to instructions. The pause may only be a fraction of a second; putting something in its place and then (in an instant) stopping or turning to look for something new, for example.

6:54 pm. My wife said, “Lets just get ready for bed”, as we came back from the evening meal. She was smiling and happy. In a few minutes she was in her nightgown. This has never happened before. She is now lying down chewing two of the last pieces of Double Mint gum from our granddaughter’s wedding last week.

She wants to vote. I can still order absentee ballots by email.

Prescription Free

We are born into this world as cute little savages. After enough little bumps in the road we become civilized. We fit into our culture. We prosper. We die. We have, in general, no control over our birth or our death. Things happen. Cultural norms prevail. We are the fleeting carriers of an evolving stream of life.

China has recently relaxed the one-child per family rule. The old Hawaiian practice of placing a newborn, able to spend the night without feeding, in a temple basket has been discontinued. (If the child was not present in the morning it either had been selected for royal treatment or over the edge.) The child had no say in these practices of population control to prevent political unrest or starvation.

Death is a different matter. Birth is still one thing, one event (biologically); there is a second spiritual event in many cultures.  Death is many things (physical, mental, and spiritual). We can plan for our death so we can live without fear.

Things happen. Many people just die. My dad just died, after a cup of coffee in the middle of the night. My wife’s dad also died suddenly. Our mothers both spent time in nursing homes. My wife’s mother was most upset to learn she had been resuscitated at the hospital, “Now I have to die again.” When she did die, it was suddenly, just after getting up into a chair for breakfast.

My mother was also concerned about remaining alive under the conditions she found herself. My wife and I were on the shift when she did die; each breath a bit weaker, each breath with lower blood oxygen concentration  -  -  then total silence in the room.

Times have changed. The body-mind-spirit connection has been loosened. [This is difficult to write as now it is not just an academic exercise or an event in the distant future, but for real. Feelings, related to loss and grief, interfere. They have come and gone for the past two years.]

We both have living wills that have been updated as our culture (law and medical practice) changes. We both have selected body donation followed by cremation. So what is left to do?

Do no harm. Support life to the full extent of modern means. Spend more money in the last two weeks of life than in the rest of your entire life has been the cultural norm. There is not enough private or government money to do that now. This practice also ignores the question of, what does it mean to be a human being living in an acceptable environment? This is scary. What should we control and what should be left to things that just happen?

The American Indian and Eskimo both had a practice allowing the elderly to sleep in the cold until death. These people lived in a harsh and unforgiving environment. We, who are not addicted (or part of that culture), do not.

The function of residential care is to promote “life, liberty, and the pursuit of happiness”. It has three levels: independent living, assisted living, and assisted living memory care (secure environment). Skilled nursing in a hospital (short term) or in a nursing home (long term) make up a fourth level.

One can die suddenly. One can die suddenly at each level of residential care. A problem is produced when the probability of life, liberty and happiness decline to a point that the humanity of the patient or resident has been all but eliminated for an extended period of time. This brings me to the practice of medicine as we are now experiencing it.

The day that the doctor was “top man” seated next to God is over. Drugs are now approved that show a “significant benefit” over a control group; that is, 1/3 get better, 1/3 get worse, and 1/3 show no effect. Our neurologist explained the situation. “There is no way to know if this drug will make your wife better than if we did not use it. However, at her stage, it is our last chance to make a difference, if the drug works. The drug is expensive. I have sent a prescription to your pharmacy. Stop on your way home. If the drug costs you several $100, skip it.” Our HMO insurance will pay the over $2,000/yr cost. Our next appointment is in three weeks to determine if the drug should be stopped or continued.

[This same situation exists with blood pressure and cholesterol medications when blood tests and an appropriate “holiday period” are not included with annual checkups. Are you in the 1/3 that showed a significant beneficial effect? ]

Today the doctor is an advisor. The patient or the patient advocate must make the final decision over use of a drug that may or may not work. This is the environment in which we must now make decisions about death.

Yesterday I read an article by a doctor who extended this environment to all medications. Should we be giving near-death, very low quality of life, patients drugs that reportedly extend life by way of blood pressure, cholesterol, and etc.?  This doctor’s article prompted me to write this post. The 

probability these drugs are actually beneficial for my wife is not 100%. The probability these drugs are harming my wife is not 0.0%.

If the quality of life is no longer acceptable, then all measures to extend life should be stopped and just let things happen, naturally. This is hospice today.

This now puts us between “life, liberty, and happiness” (residential care and skilled nursing) on the one hand and hospice on the other. Where between these two extremes do we just let things happen? One of my wife’s best nursing friends who was, until recently, still living at home, made that decision with her family and died within the week.

In the above case the lady (a nurse practitioner) was of sound mind and fully knowledgeable of her situation. My wife, in memory care, is no longer fully aware of her environment. She is functioning much like many of the underprepared college students I worked with; strictly at the concrete level of thinking. There is no planning ahead. There is no relating of observations to produce a web of information (understanding) that can serve as the basis for her to evaluate her situation (or for students to further their learning and to earn high test scores).

Now to reevaluate our living wills and discuss this yet again with family members, the neurologist, and the family practitioner. As difficult as this is now, it will be more difficult later. Hopefully, the problem will not arise. [Our neighbor, in the next apartment, just died in the night within a few hours after I talked with her.]

Is going prescription free a better way to approach the dying process (stroke, heart attack, etc.) than continuing with current prescriptions that may or may not be effective? I have encountered several stories about how much better people felt when going prescription free (with the exception of prescriptions that have an immediate positive effect such as acid control and allergies, rather than waiting weeks or months for an effect that just may be a natural spontaneous recovery). Even many hospice patients life longer than expected prescription free.

[This Sunday morning, my wife, took very little part in the 10:30 exercise class she formerly found the most fun activity offered in memory care. She continues to rank with the lower 3 residents of 17 present today at dinner.]

[September 14, a week later, she alternates from happy and content to very short periods of anger and defiance that are strongly related to someone picking up something she is fixated on (napkin, toy, game, etc. that she can fit into her pockets or purse.]

Speaking with Memory Gaps

It was about a year ago, six months before we moved to Provision Living, that my wife directed me to turn left at Broadway and Stadium. I figured she wanted to go to Hardies. We drove past it. Past the next three intersections.

As we approached Interstate 70 she pointed to the right. Again we drove past several off ramps as we headed east. I double-checked where I was to drive after passing Interstate 63. We were in the country now. As we approached the Lindbergh exit she indicated we needed to use it. Then left over the bridge. North through Stephens. As we spotted the mail boxes on the side of the road she said, “This is were T___ and L___ live.”

What I had suspected from our last few trips to fast food shops was true. She can no long tell me where she wants to go but can direct me. Then from the previous post:

My wife has adjusted to that last move. Our apartment and the activity areas are no longer separate places to her. A few days ago she blocked the apartment door open and went back and forth between these two separate spaces. She only did that on one day.  Later, I did the same thing to see her response. She did not like the door to be blocked open by me.

As a child would do, she was proving her new discovery to herself (and to me). She did not want me to repeat (actually, reverse) her message.

The last few days she picks up items and taps my arm with them. Her best Mom and Dad picture is about every 5^th item. I always say, “Yes” and then comment on each item. This happens in the evening for 15 to 30 minutes at a time.

This evening we went on our first drive around in over two months. She did not get upset when I asked her for directions at each intersection. We ended up at the Hy-Vee gas station near our old house. Then south on Scott past our old subdivision, The Hamlet, to Esther Lee Ct (named after her mother) where a new house is started in the last vacant lot. She was bothered by my turning into the court. Then south to the roundabout at the Hinkson Creek where Scott is now closed; and turned east. At the golf course she was ready to go home. She recognized Forum Boulevard and the turn north toward Chapel Hill Road. Provision Living was where me turned into our home.

She was content. No problem getting her to leave the car. She no longer recognizes our car so we can again park it outside the apartment rather than on the backside of the building out of sight.

She was eager to get back into memory care and knew her directions. I unlocked our apartment door as she paused by the nearby window at the end of the hall. I said, “I am leaving it unlocked.” She came to the door and again paused, looking toward the activity area. I said, “You can go there and join the other people.” Again, a pause. And then for the first time took off on her fast pace to join them. So that leaves me here writing this post.

We can now communicate again. For the past few weeks I was again getting that uncomfortable feeling that we were drifting apart, un-bonding. She is fun again, in a limited fashion. I can write about recent events.

We can again make a game of finding lost items. This time by her rules. Not by finding specific items but by finding things, in general, that include items that strike her fancy at that moment; which she lines up on an emptied shelf.  With luck one of them may be what I need to find: tooth brush, comb, soap tray, one pair of the 20 pair of socks hidden throughout the apartment, and etc. I now understand how she can sort and rearrange her keepsakes for hours at a time.

It is pointless to ask her where the spot is in which she has just found something. She cannot tell me. Also, the idea that some related item may be at that spot is equally in vain.

She does a good job of housekeeping. If things get to the point I feel I need to help her, the next morning the floor is clear again. Our studio apartment is getting larger every day as she sorts and condenses things and as we discover how few things we really need to live here. The dining and activity areas are, at last, part of our house.

I have checked the Boone County Library for the references in the last post and for this one on communication. I found none of these, but dozens of books, DVDs and e-books.

There is a marked difference between theory and keen observation. Naomi Feil, who started Validation, is a keen observer. She saw, and then thought, what many others missed. This short film shows how it is possible to communicate with a person in a most extreme condition; a validation breakthrough. This film is hard to watch with our normal expectations. It is a masterpiece if you read and understand the following paragraph (which is difficult to do if you have not lived 6 months in residential care including memory care).

Other material available helps get across what it means to value a person as a person rather than by their diagnosis, productivity, title or wealth.  The catch is a practitioner must do this for himself before he can have the empathy needed to connect with the patient or resident without distractions. This is almost a religious experience. It borders on an out-of-body experience. It takes me back to the time I almost answered the call to train as a minister (instead, many years later, I got a BS in chemistry as a foundation for understanding the world about me).

There is hope now that we will be able to communicate until our “days are numbered”; from dust to dust.

A New Reality: One or Two Spaces

It is 1:52, Thursday, 25 August, 2016. I have three hours before there will be a nock on the door for the evening meal. It takes four hours to do a complete search of the apartment. The place is getting too big or we must remove a lot of stuff.

Up until yesterday, my wife paid little attention to stuff on my desk or file cabinet. Yesterday that was all she wanted to "check out". The new power cord for the air ionizer, particle agglomerator, arrived. I opened the package and had it in my hands about 10 minutes; unfolding the cord and getting ready to plug in. The phone rang. I answered and hung up. The new power cord was gone. Nor did we find it last night.

As we were getting into bed, my wife threw a pillow at me in an unexpected but teasing way. My body responded in a way that I have not felt in about 75 years. I had a quick and bad temper as a little kid. I found that I felt better after such an experience (now we know: the rage relieved my allergies, I felt better for a few hours). I also learned that it could get me into troubles; say things or do things that can never be undone.

This morning she only wanted to sit at my desk and examine everything. That means pick it up, look it over, and then put it somewhere else in the apartment; sometimes with and sometimes without any sense of order. The blue fitted bed sheet I laid on the day bed, as I got ready to put the blue sheet on my bed, vanished as I turned away for a minute. I found it later, compressed to 1/4 the size I had last seen it in a small packing box.

Our oldest son set up the "Find My iPhone" as part of his complete overhaul of this computer last weekend. The iPad has been missing the last 2 days. I could not remember how to find it this morning. His response to my iPhone message was a message, and using TeamViewer to show me how to get started. The iPad's robust ringing led me to an old CPAP case.

Most people put new things on top of whatever is already in the space. My wife puts them within or underneath.

And so I have been pushed to the brink again. First it was my back that landed us here at Provision Living at Columbia. Now we must learn to live in residential care either together ($7,000/mo) or in two separate spaces.

The cost of separate spaces is obscene (over $10,000/mo), but two other couples are now doing it; they have sold their cars. The last couple split yesterday as the "caregiver" had not had a decent nights sleep in the past two weeks. We have no trouble sleeping on three beds in a studio apartment.

He and I are no longer looking at residential care as a substitute or replacement for living in our own houses as homes. Former apartment dwellers can skip this adjustment. We are looking to make the best of the situation we find ourselves with the funds we have.

I do not want to be pushed to the point that I again feel that blast of heat that starts in the chest and then sweeps out to the ends of my fingers, toes, and ears. Time stops. I float for a moment, suspended in space. It is not the rational world that I like, and am comfortable in, and I feel safe when I can get sufficient facts on which to base conclusions . It is not the emotional world that is fun and I am comfortable in when shared with friends and loved ones; but in which I feel less safe.

It is not the same, but boarders on the world I have had to share with tobacco addicts before I realized their problem was their addition rather than anything else they may say or do with tobacco. I could tolerate them (and their apologists, who work them for profit in several ways) for a period of time before my feeling became a slowly increasing boiling, rather than a sudden, unexpected bolt out of the blue. This was periodically accompanied with severe digestional track upsets. I have had one here.

One space or two spaces? There are no residential care sites in Columbia, MO, that are tobacco smoke free. (Only the University of MO, medical center no longer hires tobacco addicts.) During 6 months here at Provision Living at Columbia, I have found tolerable air quality (tobacco addicts and Air Scent powered dispensers).

Independent advisors still tell me to "stay the course". So we clear out all the stuff we can from this studio apartment that still leaves my wife with things she "needs". If I pick up something she wants, she has no difficulty letting me know. I also must clear out the lockable two drawer file cabinet for space to put what I must not lose. [My wife is the only one in the 22-person unit to exhibit this extreme pack rat behavior, in our apartment and the activity area.]

Plan two: If two spaces become necessary for any of the above reasons as well as the progressive nature of "memory gaps", then pick a memory care site near a willing relative where there is no tobacco smoke or the use of misnamed and misused air fresheners.

It is now 3:47 and I have been polled for supper. I often order one each of the two main options. My wife and I then accept or trade at the table. This gets us out of the problem several residents have of forgetting what they ordered; and when seeing the plates, want to switch, or order something entirely different (which is always available but may require a 30 minute wait for it to be cooked).

I hope this "on the spot reporting" conveys some of the feeling of life in residential care. It has helped me "cool down". I personally cannot feel that we have been here six months. I have been so busy adjusting to constantly changing conditions "one time, get it right, permanent choices" that time has just roared by.