Sunday, September 18, 2016

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.]

Monday, September 12, 2016

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 5th 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.