Communication Within and Between Performance Levels

(Written two weeks ago.)

The events of yesterday again highlighted the success and failure of communication between residents and their loved ones and caretakers.

A past post reported my observation (at South Hampton Place where seven refugees from the flood at Provision Living spent three months) of my wife and another resident to seemingly communicate without words. I have now seen this happen twice here.

We were seated at a table for four; my wife to my right and another resident across from me. He said something to me. She looked at him and grinned.  Then in several small increments their smiles slowly turned into a full-face grin. My wife nodded her head and they both burst out laughing. Their faces then returned to normal.

The second time, we met a resident in the activity area. On meeting, without a word spoken, this grin and chuckle occurred. The two then went on their separate ways; seemingly feeling much better for the encounter. 

Then later in the day, a caregiver shared her observation. “M___ is such a good helper. I was just at the point of leading R____ to the dining area when M___ touched the back of his hand with hers: he stood almost straight up and the two walked the rest of the way.”

My wife has resumed walking her two patients up and down the hall, but to a less amount than before the flood. The three have something in common at the lower end of the performance pick order of residents. This is a fact, but it is still hard for me to accept.

Each has developed a unique dementia personality that swaps in and out of “normal”. Living in this memory care environment, they can be happy most of the time.

Now, in contrast, is the communication failure between memory care, assisted-living, and independent living levels, in and out of residence and the resulting mental anguish. I still eat breakfast in the main dining hall.

I mentioned to the person seated across the table from me, that I had seen his silhouette, against the glass doors, across the memory care activity area, on a prior day, as we were eating. “Yes, I was getting my wife out of prison (memory care). I just do not understand her anymore.”  He was reading all he could find and had attended ALZ meeting in his hometown.

His problem and mine have been the inability to apply generalizations and policy statements to our specific situations. We need a frame of reference that fits two very different worlds. One has a clock where time is predictable across minutes, hours, days, and years. The other has, as I have now come to realize, is not a case of no clock or a broken clock, but a matter of several clocks.

Memory care is not a prison. The only differences between memory care and non-memory care residents are that memory care residents cannot remember the door code and they get lost when they wander. Memory care is more like living in a big family, that shares dining and activity areas, than assisted living, which is more like a five star hotel where people can hid in their apartments.

He must stop relating his wife’s behavior to past behavior. He needs to attend to what will make her a happy day, today and tomorrow. She is who she is today. And that is hard to accept, if you are continuing to compare now with the past or what might have been. It can promote grieving each day rather than enjoying each day or part of day.

He must also find things to occupy his own mind and physical needs so that he can continue to share an apartment with his wife. I have this blog, the physical fitness program, and the monarch butterfly project. We still have 250 cubic feet of storage full of boxes I find difficult to sort and pitch.

“She does not seem to mind me or care about me any more.” I told him how we have visitors come to the common area in memory care. We greet my wife and then sit down at a table where she can see us. In time she will come over and visit. In time she will get up and continue her trademark activity of randomizing everything she can pick up. In time she will again rejoin us. She is in her world. We are in ours. At times they mesh.

She is fully aware of what is being said, but with a very limited past (immediate and distant) for referencing, finds any discussion meaningless with the exception of the current moment; unless there is sufficient repetition or time for her to switch between different clocks.

[Caregivers take advantage of this situation by timing diversions and distractions to fit into that two to five second space between clocks (fixations on activities). A skilled and experienced caregiver can anticipate these changes between fixations that run on different clocks. This is the main reason you want the same effective caregiver as much as possible.]

For those who can, our task is to take part in and build an environment in which we, and our spouses, can be as happy as possible. My wife and I did that in our home for a year with well-matched Home Instead caregivers three times a week. My back problem put us in residential care. We are still building the best environment here in our apartment, the common areas (indoors and outdoors) and in the fitness center (gym).

[I was up before 5:00 am this morning to write this. I have the iPhone set to ring after 20 minutes. Time to get out of this chair. Next to find a repeating timer or chime I can set for 25 minutes (20 for work and 5 for exercise) as I forget to restart the iPhone timer. This is just one more step in creating an effective health care program.]

[StretchClock allows me to set the time between short stretching exercises: 25 minutes of work and a 5-minute set of yoga exercises (stretching as we do in the fitness classes), for example. I do not have to remember to reset it. Google “repeating looping timers” for dozens to select from.]