Maggie's Behaviors

Each of the flood refugees, here at South Hampton Place, have further developed behaviors that are foreign to their “former lives’. A recording over several days would show almost perfect repeats of unique behaviors. The rest of the day they respond almost “normally”.

A memory care facility is designed to accommodate these behaviors. A skilled-nursing facility is not so designed. It takes the entire SHP, experienced, staff to help the Provision Living caregivers keep tab on the six memory care refugees. One PVL caregiver has lost weight walking from one end of the building to the most distant end several times a day with individual refugees and in groups.

A typical day for Maggie involves a slow continuous search, collect, and reposition of everything she can pick up or, in our room, move. At Provision Living at Columbia she had her two keepsake shelves, with the office chair between, to play with by the hour. She also had the large activity area with several project tables that were under constant observation. She had a long wide empty hall in which to exercise her two charges, including Dr. ___ without getting lost.

In two months we have picked up new friends. Maggie breaks out into her characteristic smile as we pass through the dining hall, to the room where we eat and play, as we go by each table. The people respond. Today one stopped me in the hall. “Maggie is your wife. I like her. She pushed me all around the place.” I waited a bit, considering her last event ended with the man yelling for help and, “I’m being kidnapped.”  “I liked that,” And she wheeled herself on down our hall.

As I am again writing on this, an empty bottle of general vitamins was delivered. I need to get a new bottle. I put it on the bed beside me so I could finish what I was doing. Now, after a 15-minute double search of the room, we cannot find it in one small room. Our house had seven rooms. The contents in the kitchen were totally randomized. I wish I had learned about the magnetic drawer locks then.

That continues here at South Hampton Place.

Syrupy Sweethearts

Syrup Container

Container Lid in Bath

Mac Packed

One Snack Left

Fruit Snacks

"He dropped it"

Surgery

The movie “Still Alice” shows two solutions for a couple: one in memory care in Minnesota near her husband’s new job and the other with Alice staying home with a relative and a home caregiver. Both would contain the many behaviors that develop over a period of several years. We both progressed to memory care for an accommodating secure environment (the flood should never have happened) until skilled-nursing would be needed.

Unless you have the money, and we do for a few years in memory care, thanks to Maggie’s management, the stay-at-home option is the only one.  High quality memory care provides a feeling of comfort to both the resident and to relatives and friends. The money is not being spent on just one person, but on several; several of which are now following this blog. Dementia requires the help (time) of a number of people: relatives, friends, and/or hired quality caregivers (money). They are somewhat interchangable.

The time to move to memory care is often stated as one to two years before you actually do move. The 20^th December flood of Provision Living at Columbia has produced a natural experiment: the effect of moving from a space that has become familiar, after eight weeks, at South Hampton Place to return to a prior familiar space. We anticipate a marked reduction in the intensity of behaviors among the refugees, in general.

We have one week until we return to our 3-bed (day and split Sleep Number bed) studio apartment. It has as much free space as this 2-bed skilled-nursing room (21 by 12 ft) but also a full bath with walk-in shower. The beds (Invacare CS5, about $2000 single articulating bed and mattress) at SHP have been as comfortable as the Sleep Number bed! Maggie trades beds here each time we are both up at the same time at night.

For less than $10,000 we could have equipped our house and yard to match memory care and skilled-nursing to accommodate Maggie’s behaviors to date. Home Instead could have provided much of the care she has required. At some point the cost of this arrangement could exceed memory care.

Memory care provides a stable environment with new friends of equal abilities: People to tease and laugh with. Around the clock monitoring and supervision. High quality caregivers, who not only know their role, but act it in such a timely manner that calming drugs are not required.

The Dementia World

Now that my head is clear again (the old income tax papers are packed up), it occurred to me last night, that I have just witnessed some portion of the dementia world; the confusion of trying to make sense of events from different settings. For me it only lasted a moment.

Something was terribly wrong. I was angry. I could feel my body react. I did not like it to be wrong. 

A new caregiver had said to Dr. ____, “Please speak more softly so we can hear the movie.”

I took that to mean: so that she could hear the movie. That is totally out of character for memory care caregivers. She needed to be corrected.

I mentioned to her that I had seen this movie over a half dozen times, but never in its entirety at one time. I had only heard a small portion of the movie. The refugees do not like loud sounds.

But the volume was turned up. Dr. ____, “Turn it down. Turn it down.” And it was turned down.

During showings over the next two days, the top performing refugee said, “Please speak more softly so we can hear the TV.” He even got up and went over to Dr. ___ to repeat his request. So the caregiver was in character. She may have only been repeating a refugee’s request; who was seated right beside her that day.

But there Is more to these low volume fragmented multiple showings. I never get bored. Each time there are new sections. Each time it is a surprise to see what was missed before, but did not change the silent movie story. Sound is not necessary but makes a funny movie a lot more so.

I think every “adult” ought to see four of the movies: 51 Dates, Click, Mr. Deeds, and Big Momma's House. Someday I will take the time to see, and hear, them too. [Check movie channels.] Watch without sound, then with sound.

51 Dates (Adam Sandlep) is set in Sea Life Park on Oahu, Hawaii. We had season tickets in ’76-’78. We adopted our daughter then. We had the option of living in Honolulu harbor on a boat for the second year. The guy that bought it on the Konini side, where we lived the first year, sailed it to the end of the island, where two ocean currents meet, and had it come apart and sink, before he got to Honolulu. The scenes related to amnesia seem very real. There is an easy disconnect between what people in the situation would like to have happen (ed) and what is happening. (Did Maggie slid or fall to the floor the last time she landed there?)

Click and Mr. Deeds are type caste so well you have no problem telling the good guys from the bad guys without sound. I have yet to figure out what toy was deliberately backed over in reprisal to the next-door bad kid’s behavior. Big Momma's House (Martin Lawrence) is just plain funny at all levels.

Is watching movies in fragmented sections, with and without sound, some approximation of the reality of dementia awareness? We must struggle to relate things in a meaningful manner. With dementia, is that struggle necessary or even possible?

The struggle still continues with Maggie. For the first time in several weeks, she has “done the breakfast dishes” while I am writing this.  That includes the syrup cup and plate in the bath.

Her sleep pattern has returned to that at Provision Living: up at 7 to 9 in the morning, from up with me at 5-7 here.

Our first pair of robins, yesterday. The 15 boxes (13 of which we never opened) from our apartment, stacked inside the room doorway, were picked up this morning as Maggie woke up. We move back to Provision Living in one week; over nine weeks after the flood!

The other refugees are also aware of the anticipation the caregivers express in getting home again. They are disappointed that it is not today or tomorrow. “Tomorrow. Tomorrow. It is only a day away”; for us. But it is now or never for them.

PS: Our caregivers told me to see "Still Alice". It is free on 123Movies. It covers our adventure up to the time we had Home Instead coming to our house. The movie chose a relative living in the house and a caregiver. We are past that. Maggie's behaviors now are the same and also very different including wandering.

Attention to Details

The decision to put Maggie back on calming medication, as needed, raised the concern about her recovery from a very large dose, from what she had been taking, of Xanax for the past two weeks. The following Sunday afternoon I took her to the classroom we use at South Hampton Place after saying good-bye to my brother and his wife at the front door.

She did not want to go into the room. Then her favorite resident, Dr. ____, facing the glass door, stood up at the far side of the room. Her face lit up. Her hand no longer was trying to force mine from the door but was trying to turn the door handle.

They met in the center of the room with big grins on their faces. Each had a right hand pointing straight ahead in an “ET phone home” pose. There was a brief exchange that no one understands followed by both turning and going their separate ways.

I came back later, to find the refugee group playing with a beach ball. This went on for almost 1½ hour. Maggie was having a good time. Dr. ____ got tired and called for an end of the play part way through. After a nap, he rejoined the play. Maggie has shown no adverse sign of recovery from a larger dose of calming medication.

Our PCP pointed out to us that the fears of decreasing medication, promoted by doctors who use Xanax, did not apply to the low dosage that was effective for Maggie. The details are that 0.25 milligram, as needed, is far from 2-3 milligrams per day for over three years used for panic and anxiety control in psychiatric patients.  

So what did happen? The falls every other day stopped. Then three days ago I woke up, at midnight, to go to the bathroom. As I left the bathroom, Maggie was sitting on the floor. Her back was resting against the bed. Her legs were straight out in front of her. Her shoes were on.

I failed to get her into a nightgown before I fell asleep. The caregivers had had no better luck. By not forcing her to do things but waiting for her to respond to a request, medication has been used only once in the past week.

I pulled both call buttons. One call button during the day means Maggie has pulled it in her endless inspection and rearranging routine. Help arrives and she is lifted to her feet. We all gasped. She looked like both ankles were broken. As she was lifted, I saw her feet swing out to the point that the shoes were on their side.

Our best guess is that she had taken off or loosened her shoes to the point her heals were exposed. When she tried to stand up, her black crew socks, slipped on the floor. She did not fall. She slid. She was not wearing her yellow gripper socks.

We goofed in managing the details. Now we put the gripper socks on whenever she is in bed. We do not wait for the “normal”, orderly, way to do things.

Both beds are now positioned with one side against a wall. The bed that Maggie slid out of has been fixed to the floor. Again the details: Maggie changes beds any time we are both up in the night.

JUST NOW. Yesterday a bruise was showing on her right knee. Today it is a BRUISE as I help her get her stockings on. Did she fall rather than slide? My guess now is a fall. She then pulled herself up to the bed where I found her. How this could have happened in 3-5 minutes without me hearing anything is a mystery. At Provision Living at Columbia the door to the bathroom is directly into the bed area, not in the short hallway into the room that provides privacy in a two bed skilled-nursing room. Also the floors are a hard weave rather than tile.

Medication Resolution

I was waiting in line, 4:00 pm, at Wall Greens when the heart doctor’s office called. The heart monitor had a good recording for all afternoon and night, including the fall in the morning.

Maggie’s heart is being protected from fibrillation by Sotalol and her resting pulse never went below 50 bpm. The problem seems to be over medication. A call to South Hampton Place would be made next.

Wall-Mart, Wall Greens, and D&H Drug all said they had socks with gripper soles. They did, but not over the heal. Flow’s, near the Boone Hospital did not have them either. So to the main desk at Boone Hospital I repeated my problem with phone photo in hand. They giggled. “Try the Emergency Room, but they will be yellow.”

The place was busy. The triage lady was too. Across the way, the two sign out ladies were visiting. I showed them the photo: no grip on the heals. “No problem. Is H___ here?” Another voice said, “Yes”. He appeared and then returned with two pair of real gripper socks. “No charge.” We may also have these in our storage from the flood.

Now Maggie can easily get up out of bed, and be helped up from the floor, without having her feet slide across the slick floor. I was again assured at supper time that SHP had proper gripper socks in the laundry. No one has found them yet.

The pill delivery man on duty at 5:30 pm informed me that the heart doctor’s office had called the nurse on duty here at SHP. They arrived at a management plan that is characteristic of memory care. 

The ridged delivery of Xanax three times a day, and at over four times the dose used at Provision Living, was replaced with use-as-needed but no more than one pill every 12 hours. This order now gives the nurse at SHP the same ability to manage as at PVL

The traditional skilled-nursing approach works, after a dramatic initial adjustment period, The only catch is the side effects: weakness, sedated, and falling.

We have been up since 4:30 this morning. First a walk up and down Hall 300 in our PJs. Then on shadow duty and remarking clothes for the laundry. Maggie is now walking around normally. Her slow shuffle is gone. She actually picks up her feet again.

I marked with inch high letters: HART; silver on black clothes. It then occurred to me that people who do not read English may have a problem. They will now see: HART, R Hart, R HART, M HART and M Hart; and, more than one on some garments. To add to this, is the fact that three different people have helped mark our clothes.

We have yet another week before we return to a modern memory care environment where Maggie is a resident, in her world, rather than a patient existing in our world. Supper, yesterday, may be a preview of what to expect, unless we are now seeing the effect of reducing the dose of Xanax. Mood controlling drugs are unpredictable: help, no help, and harm.

From time to time she becomes fixed on something or on a container of things. She has a concerned expression on her face. If it is someone’s phone, she will grip it or the person so hard that it is nearly impossible for the owner to get her free. “Richard.” 

Distract and re-direct are the magic keys to behavior management. This works like a charm in memory care with familiar caregivers. The tools and timing can be readily manipulated. Timing here is measured in seconds. As in baseball, you have to hit the ball when you swing to get a home run.

A more disturbing observation of the past two weeks is an inappropriate behavior: eating with a knife rather than a fork or spoon, attempting to eat something other than food, and putting on a second pair of socks over her socks or her shoes.

We now have two days to see what happens before our next PCP checkup on Monday. That office was also concerned about over medication when Maggie and I stopped by Thursday. I wanted all parties to confirm they had received a FAX containing Maggie’s med list. We have a PCP, in charge of our Medicare insurance, and a house doctor with conflicting judgments: falling and behavior.

Fall Number Six

The sound of CNN from across the hall faded out as I woke up. A faint rustle came from Maggie’s mattress. I sat up to go to the bathroom. Today would be her next expected fall. I did not want to miss this every-other-day event for the past two weeks. I had seen two of them already; nothing broken so far.

There she was on the floor looking at me some six feet away. It is a shiny clean foot-square always-looks-dirty hospital tile floor from over 20 years age. At night the half-opened bathroom door reflects a soft light throughout the room.

She had that “Well, here it goes again”, expression on her face. No bumps or bruises. She cannot get up by herself. I trip the room alarm and the bathroom alarm. Two days ago a Provision Living caregiver arrived in less than a minute at midnight. The aids here know that the lights come on and off during the day as I reset them after Maggie pulls the lines out of the wall sockets from time to time.

Three minutes. I walked into the hall. Both alarm lights were on. A person at the desk saw me and turned to my right to talk to someone I could not see. It was a PVL caregiver posting notes on the other four refugees. She had just left our room on her hourly check on Maggie at 6:00. I woke up at that time. Maggie slid out of bed shortly after the sound of CNN was muted by the room door closing.

The usual threesome arrived to pick Maggie up to standing. When she falls during the day, her shoes grip the floor. This is very helpful in standing her up. Our crew socks are slippery. A set of gripper socks arrived; then the standing up. I am advised to get gripper socks for both of us. PVL memory care has a hard weave carpet floor that minimizes slipping.

8:00. Maggie is sitting on her bed ready to put her pants on. Her shoes need to come off first. On got the pants, but it took her three tries to stand up. She is fully aware of her loose grip on the floor. To my surprise, in this never ending string of surprises, there is no grip under the heals!!

Yesterday we took the heart monitor back in the morning. Maggie had taken it off and put it in the middle bathroom chest drawer. It stayed on all night. The PVL crew were happy to get her up and dressed earlier in the morning. She fell about two hours after going to bed. Or did she slide out of bed?

The records now show six non-injury falls. She does do free falls as well as slides. I have seen two of them. Her body relaxes; she slumps a bit and then goes down in a turn to the right. Her expression is one of relaxed bewilderment: “Now what?” There is no sign of fear, of falling or of trying to catch herself, On contact she rolls back. Her right leg seems to give way; allowing her to, basically, just swat down. There are no bruises except from what she hits when rolling back; they are on her back and the backside of her arms.

I understand the roll back from PVL exercise classes. Just swat down as far as you can. Then lean back. Unless you have done this a few times (and avoid going straight over), the result is a bang on the back of your head. My feet flew directly above me toward the ceiling, the first time. The trick is to roll back on ONE hip. This is what I see Maggie do with the exception of her first fall, the month after we arrived at PVL, that sent us to the hospital for stitches.

The heart doctor prescribed to slow heart muscle that could cause fibrillation to occur; a pulse not below 50. The neurologist prescribed to slow the rate of dementia decline using a patch to avoid digestive tract problems. He also used a daily low dose of long term calming drug and a second short term dose as needed drug.

Two weeks ago the house doctor at South Hampton Place changed the short term drug from “as needed” to daily am and pm and double the dose for night. The PVL people and I were not informed of this. The PVL caregivers do not have ready access to SHP records.

Maggie went into a calm dazed state for a couple of days that concerned everyone. She has slowly returned to a “near normal” state now; with the exception of falling, a slower wobbly gate, difficulty standing up, and so weak that I have to put her right foot into the car.

She is not In pain. She is back to teasing her memory care refuges. She enjoyed the sing along of old time favorites yesterday to the point she did not want to leave the dining hall.

We now have three doctors and half a dozen workers at two residential care facilities trying to sort out what is happening. Fortunately, for me, Maggie’s three month checkup with our PCP Is at 11:00 Monday. [Written Friday at 10:10 am]