Margaret's Rash

Yesterday I met a pair headed to an in-service training program. They were concerned about anything that might be of interest to the Provision Living staff from the resident’s family point of view.

Yesterday Margaret and I had our 6-month doctor checkup. We both felt about as good as it gets now, except for the reoccurring rash under her tummy fold and now also further down.

Dr. Hayes point of view was that the rash was not “reoccurring” but “ineffectively treated”; that has not been eradicated. I mentioned that Gold Bond medicated body powder and calmoseptine ointment seemed helpful. Her reply was Nystatin was needed and applied on an uninterrupted schedule twice a day until the skin Is fully recovered. (The one time prescription should do the job within one month.)

Our caregivers recently changed their schedule in putting Margaret to bed. Instead of waiting for her bedtime, about 9:00 pm, they are starting about 7:00 pm. They are then starting a 15-minute cycle to start the process two hours earlier.

Seated on the daybed; “Time for bed.”; holding a night gown. With any negative response, continue talking to her and teasing for an effective command.

If she leans fully back on the daybed and raises her feet, then remove her shoes, along with the usual request or description of what is being done.

A new person jumped aside, “She is kicking at me1” The new caregiver misread body language.

Once the process begins, accompanied with the usual banner (similar to an auctioneer’s chant except attention is now controlled by soft, short, well spaced speech) and motions; Margaret may well just sit there and undress and put on the nightgown herself.

On the other hand, at the first time a frown appears or a hand is raised; it is time to stop and just visit a bit and then start again. A couple of minutes visiting with me (letting Margaret continue with whatever has her attention) works too.

If the jaw drops, a fist is formed, or a hand points out the door, it is time to recycle back in about 15 minutes. Don’t push to the point she batters you with a fist.

When this works, the rash is treated properly. The sleep number bed even reports that I am getting a good night’s sleep: over a quality sore of 80%.

But this morning I found Margaret in her nightgown but still in her day cloths. The rash had not been treated? (I marvel at the way two or three caregivers can enter our apartment and care for Margaret and not wake me up.)

[6:50 am. Fire drill!!!  Margaret and I, and the guy across the hall walk to the gathering area.]

{Next day!! Between caring for Margaret, herding caterpillars and milkweed plants, yoga, my daily hour trimming seed stalks from Sericea lespedeza on the sanctuary, and a surprise 59^th wedding anniversary party it was 9:00 pm by the time we turned in.]

The rash looked good yesterday morning, but not so good at bedtime. During the day I questioned if the Nystatin prescription had been delivered. I then called the doctor’s office. (I had a feeling that something was not right when we left the office. I forgot to check on the order.) The order had not been sent! It was sent. It arrived in a few hours, ready for yesterday night.

Now for a new plan. I stay in the apartment until Margaret is up the first time in the morning. Pull call string. Caretaker applies the Nystatin. (For months, I have been able to eat at 7:15 and get back to the apartment before Margaret is up.)

Execution of new plan. Margaret wakes up and looks ready to go to the bathroom. I pull the call string. Caregiver appears. Margaret is not ready to get up. Caregiver carries on with other duties until I call again.

I call. Caregiver appears without Nystatin. Returns from nurses station with the two old ointments. We search apartment. Find and apply Nystatin.

New plan: Lock Nystatin and Calmoseptine in my file cabinet. Call when Margaret is in the mood to shower, go to bed, or get up in the morning.

Margaret is not only becoming more distant, but a third Margaret is becoming more clearly evident, to me. I now believe the caregivers have been fully aware of the third Margaret from day one. This is a speechless compliant Margaret. It is different from a defiant, “worries”, sun downing and, in general, verbal Margaret.

It surprised me when we went to the doctor the other day. I told her we were going to the doctor after she was fully awake. There was no response. I told her she needed to get her cloths on, that I was holding, about an hour before we needed to leave. All went well. She had 30 minutes to play with her keepsakes.

I then told her it was time to go to the doctor. She marched out the door!! She did not have to check on a dozen things requiring numerous trips back into the apartment, including checking the bathroom several times.

She was in a state that she often appears when caregivers talk to her for up to several minutes terminating with a “yes” head nod. She then does as directed or what she needs to do, often, without direction.

This morning I handed the caregiver the Nystatin from our lockable filing cabinet. She said she also had a tube in the medicine cabinet in the nurse office.  Two tubes!!

We checked on the directions: “Apply twice daily”. The computer said “Apply as needed”. The computer was updated.

My error was I should have given the nurse a copy of the order to get it into the system correctly. Or when a prescription shows up, the caregiver checks the directions as was done this morning on the arrival of the second tube.

It is things like this and Margaret’s mood swings, when they disrupt scheduled events, that still set my back into spasms. The fitness classes, meditation, standing up properly, and not missing my exercises before getting up in the morning; that are what still keep me away from physical therapy or a chiropractor.

[A couple of days later after no successful application of a “new plan.”]

[Friday night “Apply twice daily to the affected area.” As I came back to the apartment from working on the Butterfly Sanctuary, I saw ointment being applied to Margaret’s face. I questioned this.

Last night about ½ of the tube, that I have, has been used in a few applications to her tummy fold area.]

The computer instruction was to apply ointment to the affected area. The ointment for Margaret’s face was no longer in the medicine cabinet, so the switch to Nystatin. Both prescriptions were to be applied “to the affected area”; by well trained caregivers, who know Margaret well, on three different shifts. It appears that the affected area must be identified and the rate of application also given.

Today we got to 9:00 am Margaret’s time at 3:00 pm our time; according to plan. Margaret is in general in good spirits. Were we in skilled-nursing, as we were in South Hampton Place, she would be highly sedated (calmed). Her caregiver time is increasing in getting up and going to bed.

Since this “two day” episode has now spanned 10 days, I am stopping here. It gives you a glimpse of the world we live in. We are tagging the next 25 monarch butterflies we raise fed on milkweed leaves from my older brother’s farm. Trimming invasive plants from the butterfly sanctuary an hour a day is a good distraction for me.

Relatives need to be very patient and not afraid to question everything. The simplest event can turn into a 30 minute ordeal if you are not flexible.

9:00 pm "Here comes the calvary!"  I asked Margaret if she was ready for bed. "Yes" Pulled call. Three familiar caregivers marched in to a cooperative Margaret. Ten minutes later they were on there way. With that woman power, they could work with Margaret as if a little doll: clothes off, ointment, nightgown on, and fully into bed (no foot on floor).  New plan worked.

Next morning after post. It occurred to me that the almost empty tube of ointment had been used for 10 days rather than just a few days. Time only passes with the caterpillars getting bigger, pupating, and emerging as adults butterflies.