Synchronizing Assisted Living and Memory Care

22 Feb 2016                           -6-

We have now lived at Provision Living at Columbia (MO) for six weeks. The original plan was for my wife to go to memory care each morning. It is the next door beyond our two-bedroom apartment. This has not happened as the adjacent 12 apartment unit will not be opened until after about another five months.

This creates a problem shared with Mill Creek and Mill Creak Arbors where one of two spouses living in assisted living must be transported to a second building for memory care each day. Both sites raise the option of a Home Instead caregiver being added from 8 to 11 each morning at our house to get my wife up for the day and cook dinner and supper ($2,000 am + $900 pm + $2,000 food, car, and house = $4,900/mo). Level of Care II a Provision Living at Columbia (MO), in March, is an additional $600/mo or $7,100/mo total or (85,000/yr and $59,000/yr, a difference of $26,000/yr)

Chart 1. Assisted Living by the Clock

Life in assisted living and memory care is quite different. The passage of time is totally different. In assisted living, time is filled with a scheduled set of activities that are, in part, designed and sponsored by residents (Chart 1). In memory care, time is filled by a list of topics that are orchestrated in every way by the mood and response of one or more groups (Chart 2). This is a collective effort to achieve what is called “redirecting” when working with an individual.

Chart 2. Memory Care by the Mood

Assisted living follows the clock. The program success hinges on schedules that are publicized and generally kept. In operation, room checks before an event are often used to bring in a crowd. There is little downside to missing an event.

Memory care follows a pattern of redirections. Timing is critical to prevent a resident from falling out of the current activity and in transitioning between activities. It is like watching an orchestra conductor directing each player.

My wife gets great enjoyment from the bouncing ball eye and hand coordination exercise. She appears to be playing basketball with all of the faking, eye movements, and diverted tossing to other players. This stalling entertains most of the group but drives one resident to distraction. However, if I bounce the ball to this lady, repeatedly, two or three times, she is back with the group with a smile.

The downside for my wife is to be lost in time and to some extent in place. I must depend on assisted living activities to be on time and in place when I am lucky enough to make a good redirect, or the rest of the day is lost to the “worries”.

One scheme for the “worries” is to visit our old house (10 minute trip).  She no longer calls it “home” but seems to enjoy both the trip (we just drive by) and being there 10 minutes to two hours cleaning, painting, and etc. Each stay ends when it is, “time to go home, where ever that is”.

Our apartment is too far away for a memory care resident assistant (RA) to easily come and get my wife. An assisted living RA is more available and much more successful in redirecting my wife to an activity than I am. (A common experience I am told.) Level of Care II may solve part of this problem in March.

Prescription Management

20 Feb 2016                            -5-

Our first two letters received at Provision Living at Columbia (MO) were from a pharmacy we had never heard of. Each was a bill for a drug co-payment.

The bills were repeated one month later with a suggestion that we pay them or future service may be terminated. One of the nurses in charge of pills, looked into the matter again. We found two conflicting pieces of Information:

Premier RX Health Solutions is an in-network pharmacy in St. Louis County (“If you have insurance, your co-pay will stay the same”). But our insurance summary of benefits contains: “If you reside in a long-term care facility, you pay the same as at a retail pharmacy” That is, a $10 co-pay each month, or $600/yr for five prescriptions. (This may change to 28 days, or $650/yr, in March.) A phone call to our insurance company produced other pricing that needed to be examined.

Chart 1. Schnucks Pharmacy and Premier RX Health Solutions

Then we finally get the latest (December) report from our Medicare insurance company Essence Healthcare operating as Essence Advantage (HMO) in Boone County for the fourth year (Chart 1). (Essence x Premier x PVL = unresolved as of 29 Feb 2016.)

Premier RX Health Solutions supplies drugs in bubble packs. Schnucks Pharmacy uses vials and bottles. Bubble packs save time and reduce error.

In our case, Premier RX Health Solutions did not have 134 mg fenofibrate, but did have 67 mg fenofibrate. They shipped 60 capsules instead of 30 at about the same price as Schnucks Pharmacy plus the co-pay (Chart 1).

There is a potential problem here using bottles. The nurse knows my wife gets one pill each morning. If dosage is not carefully checked she will be getting only half a dose. If the next order is sent to Schnucks Pharmacy after using the half-dose capsules, she could possibly receive a double dose. A change in an order for the convenience of the supplier becomes a threat to the health of the patient. Only a vigilant nurse can catch this when using bottles instead of bubble packs. (Actually it takes three coordinated nurses to cover a week.)

Pic 1. 800 mg/14 Tablets/$7

Another situation is an unclear posting of time so that am and pm are confused. A pill may be given (1) am, (2) pm, (3) am and pm, and (4) neither. This cannot happen with bubble packs. All pills will be in a bubble pack in March (Picture 1).

Pic 2. 200 mg/100 Tablets/$4

Even bubble packs require monitoring of prescription billing and the amount actually delivered to the residential care site and to the resident. Recommendations change (Picture 2). A Premier RX Health Solutions pharmacist periodically monitors drug usage and reports to the care site and to all the involved doctors.

After my failing back, proper medication was the next reason for moving to Provision Living at Columbia (MO) for memory care for my wife.

No more, “These are not mine. They are yours.” and “I already took those pills”. Now, a knock on the door. Pill verification. Pills in one hand, water in another, and “Here are your pills Mrs. M.” readily gets the job done. Everyone here goes by their first name.

Physical Therapy

13 Feb 2016                              -4-

As the months dragged on with no resolution of the Sleep Number, bed position, and pillow; few comfortable nights rest; and my back and neck hurting worse; our doctor recommended a physical therapist (4 Aug 2015).

The first results were spectacular. In week 3 I was pain free. I could stand up straight with no muscle spasm causing me to bend at the hip or anywhere up and down my back. But as the days past it all returned, even during the last sessions with the therapist.

After Sunday, 18 Oct 2015, (Chart 4, Day 15) we abandoned the Sleep Number bed (red line breaks). I stopped physical therapy. Every turn or tilt of my head produced a grating sound in my neck. Every time my right foot touched the floor there was a sharp click at the base of my neck. As the weeks passed this clicking seemed more muted and to come from further down. Our doctor assures me it is not a problem.

It took two weeks (Chart 4, Days 16 – 30, no red line) to try out several combinations of sleeping position and pillows on our guest room bed. I had to sleep on my back, as my hip joints burned too much sleeping on either side. The return to the Sleep Number bed was a welcome relief (See Sleep Number Bed for details).

Charts 4 and 5 show the full set of available records for Sleep Score and Sleep IQ values. They start with the end of physical therapy on Day 2.

I have no explanation for the uniform periodicity of Sleep Score values in Chart 4 up to about Day 76. I know of no such biological rhythm.

The running five-day averages, Chart 5, present a helpful view. The lowest Sleep Scores (blue), below the Sleep IQ values (red), are associated with pain (the guest room bed). The highest Sleep Scores, above the Sleep IQ values (on the right portion of the chart after the change in patterns), are associated with reduced pain. When both sleep quality values were high (the last five days), there was little or no pain sleeping, sitting, or activities in our apartment.

Muscle spasms (that can mostly occur along my back in any order and combination) respond to physical therapy or to telling my brain to stop the pain by identifying the cause of the pain (stress, anger, fear). [Healing Back Pain, The Mind-Body Connection, by John E. Sarno, M.D., 1991]

The worst spasm is above my right knee. It feels like the tendons are being torn from bone and muscle. The scariest is a sharp jab in the left side about four inches below the arm. Over a period of 2-3 days it slowly fades away. This once occurred when my wife was in the hospital getting a stint about 10 years ago. One of the doctors asked why I was jumping periodically. That resulted in a full examination with no problem found. These are just two examples of observations that Dr. Sarno builds his mind-body connection on.

Provision Living at Columbia (MO), has a 10:00 am one-hour daily exercise period including weights, stretching, Tai Chi, and yoga. This covers both physical and mental aspects. We try to attend all of them. It also has a physical therapist and an occupational therapist who advised me to return to the therapist at Peak Performance where I had such good initial results, before I start working with them.

This recommendation is another hint that the real cause of much back pain is not understood nor is the most effective physical therapy/therapist. When you find an effective one, keep him and continue with the exercises he has taught you. Physical therapy removed the pain but not the causes: stress, anger, fear.

Physical therapy did something more interesting than remove the pain. It was started at the top of my back and then moved down a bit each day. The pain moved down until it (had no place to go?) ended. Along the way a spot that makes me belch did so. A spot for the false heart attack and one for the right knee were also visited. So now physical therapy again or "believe" to finish the pain problem while living here?

Must there be a physical connection between spot and pain or can the mind pick any site for the pain? Or, as is the case with our daughter, pain left unmanaged for several years can become a disease unto itself? Or is this another case of allergies (severe pain in Walmart, and a few other stores, after about 15 minutes, on some days)?

We have met three people who have purchased Sleep Number beds and returned them. All three had severe back pains. including one with three back surgeries and scheduled for another. We like the bed, we expected it to help, but we never expected it to cause or "cure" back pain. It has helped us to explore causes and "cures".

Provision Living at Columbia (MO)

11 Feb 2016                                           -3-

Charts 1 and 2 show the actual values for the Number Bed Sleep IQ and the BASIS Sleep Score. These show the variation in a real life situation. The variation is difficult to understand in these two charts.

A common practice to smooth out the variation is to plot a running average. This takes the hair off the dog. Chart 3 shows a five count running average for both Sleep IQ and Sleep Score.

Now the time for the change is clearly visible between day 33 and day 35 of the average of that day and the prior four days or about 20 Dec 2015.

We were moved, 29 Dec 2015, into Provision Living at Columbia (MO), about 9 days later.

Could a reduction in stress account for these observed changes in Sleep IQ and Sleep Score values? Around 16 Dec 2015 I had completed an analysis of the types of residential care and their relative costs for sites here in Columbia, MO. Also at this time my wife was repeating, in several ways, that she had, “no more need for this house.”

Winter was coming on and only one site was currently available. It offered all levels of care below nursing home in one apartment and in one building. Could a further marked reduction in pain also be attributed to a reduction in stress after a month in residence with very good food and radiant care personnel?

This all happened with no pain medication (except a bottle of Tums), no surgery, and no physical therapy. Singular is managing my allergy to pork and apples, and to aeroallergens associated with groups of people, and to the new building in general.

It appears that high sleep quality values, with low variation, for both Sleep IQ and Sleep Score values, are related to low pain and a sense of increasing wellbeing.

Was just making the decision to move the cause of the change, recorded and felt, in pain reduction prior to moving? Or has this, the longest and most painful, episode run its course, as it has done several times in the past 50 years?

BASIS

11 Feb 2016                                          -2-

Our son gave me the BASIS wrist body monitor at his son’s graduation from DU. It monitors heart rate, skin temperature, sweat, sleep interruptions and toss & turns and other things. It then calculates a Sleep Score with REM (mind refresh), light, and deep (body refresh) sleep.

Both the BASIS and the Sleep Number bed values are unedited, except very low values were discarded when the activity traces were markedly incomplete. The change and range of values, I believe, are as important as the actual values.

Chart 2 of BASIS values illustrates the above point. On the left side of the chart the values cyclically change from one extreme to another (40s to 90s). This is the end of a series that starts over a month earlier.

On the right side of Chart 2, the values fall into small groups with a few exceptions. The exceptions could be called outliers and be dismissed if it were not that these exceptions are reduced values from the norm for the previous almost two months.

Something happened by day 36 (22 Dec 2016) that resulted in continuing high BASIS Sleep Score values. This took place before the Number Bed gap after moving into Provision Living at Columba (MO). The increase in Sleep IQ values occurred at about the same time (Chart 1).

The recommendation to sleep five days for each Number Bed trial indicates that the body takes time to integrate changes in Sleep Number, head and foot elevation, and pillow that are summed into the Sleep IQ value. The BASIS Sleep Score values are no more responsive in detecting change but are spread out over a range of over 50 points rather then 30 points.

The two sampling systems are yielding different appearing results from the same subject. Neither system can identify the cause of the change that accoured in both systems. 

Sleep Number Bed

11 Feb 2016                                           -1-

We purchased a split king Sleep Number bed on an articulating frame in Columbia, MO, 21 Feb 2015. I was having acid reflux and back and leg pain problems. Margaret was struggling with the CPAP machine.

The remotes have a partner snore button that elevates the head a bit. That ended snoring and the use of the CPAP. Margaret’s Sleep Number has been set at 45 for several months.

My first Sleep IQ records from the Sleep Number bed indicated that the quality of sleep had nothing to do with a Sleep Number from 100 down to 30. We also had problems getting comparable readings with the BASIS wrist body monitor that our son gave me at our grandson's graduation. I did not take the Sleep IQ readings seriously. I was much more concerned over the new pain in neck, back, and hips.

Six Towel Layers and One Pillow

The final set of comparable readings started after a visit to the Sleep Number bed store (Chart 1). We set the bed frame up a bit at head and foot (one diameter of the spot on the remotes), Sleep Number 40, and a seed hull pillow (trial 1, blue trace).

Changes in the these three factors have an effect on the Sleep IQ value, and more important, on comfort and pain in neck, back, legs, and the little finger on each hand. I also was forced to sleep on my back to reduce pain.

An attempt was made to collect five readings from each trial. Trial 1 was not a good fit but not painful enough to prevent me from going back to sleep during the night. Trials 2 and 3 were better with my head elevated with two and four layers of a folded heavy bath towel under the seed hull pillow.

Trials 4 and 5 increased the Sleep Number from 40 to 45 and to 50 with worse results. (Previous work established that values below 40 were not good for pain and Sleep IQ values.)

Trial 6 was a return to Sleep Number 40 before exploring a higher pillow. It as interrupted by a move to Provision Living at Columbia (MO). Trial 7 continued Trial 6 two weeks after moving. Trials 3, 6, and 7 all have a Sleep Number of 40 and four towel layers under the seed hull pillow (square markers).

Trial 8 increased the number of towel layers to six and increased comfort. Trial 9 increased the number of towel layers to eight with decreased comfort.

Six Towel Layers and Two Pillows

Trial 10 returned to six towel layers with increased comfort in general. In fact, a sense of well being returned (I walked a mile). This trial has the least variation of all ten trials. Three of the five values are identical. Trials 8 and 10 have the same Sleep Numbers and number of towel layers (triangle markers).

(By adding a second seed hull pillow I can now sleep on my side again.)

My Sleep Number is 40, with the proper elevation of head and feet, and comfortable pillows for sleeping on my back and on my side.

Residential Care for Two

14 Feb 2016

It is 6:33 in the morning with a light snow coming down. I am usually up at 5:00 so I can do things like this before the day begins here at Provision Living at Columbia (MO). The snow swirls about the light post outside our second floor apartment in an empty landscaped parking lot. It is 6:41. The parking lot lights just went off. There is no hint of daylight.

How and why did we get here? Will we stay after winter is gone? Writing this blog will share our past experiences and help us to decide what next to do now that my health has improved (we did not sell our house).

Moving is traumatic, but so is the cost of residential care. A person developing “memory gaps” is happiest in the home she has lived in for many years. The caretaker spouse is on duty 24 hours a day. The unexpected effect of that duty on my health, and the partial recovery during the past six weeks, is the start of this series of posts. My failing health tipped the balance, from staying at home this winter with Home Instead caregivers, to moving to residential care.

We first struggled with a Sleep Number bed to relieve acid reflux and crippling back pains for me, and to eliminate the need for a CPAP for my wife. And then, to a physical therapist for me with temporary success.

     1. Sleep Number Bed

     2. BASIS

     3. Provision Living at Columbia (MO)

     4. Physical Therapy

During the past two years we have visited residential care sites in San Antonio, Texas, and in Columbia, MO to find where a couple with very different needs might fit.

We were interested in what services we needed, what services were being marketed, and how those services were actually provided. Timing is crucial in memory care. The cost of assisted living is about the same across sites in Columbia, MO. There is a marked difference in services in memory care related to the construction of each site.

Setting the cost of in-home care at $22 per hour with morning and evening 3-hour periods yields $22 x 2 x 3 x 30 = $3,960/mo. Then add $2,000/mo for food, house and car expenses for $6,000/mo minimum for two persons. That provides me four to six hours a day of free time instead of half that I now have.

The past six weeks have been very insightful. We have had the opportunity to live in both assisted living and memory care from one apartment. Residents from both services take part in activities separately and together. Two separate memory care areas can house 12 and 20 residents.

     5. Synchronizing assisted living with memory care – Across the door

     6. Cost of Residential Care for Spouses with Different Needs - Spreadsheet
     7. Prescription Management