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FEATURE:
strangers in the room when I am sleeping. At some deep level N had
some understanding and he would cooperate, like taking his medi-
cines. For a 48-hour period I had to go out of town for a wedding
and the caregivers cared for N very well.
The caregivers from an agency called Visiting Angels were indeed
angels. N demanded attention continuously. The care givers seemed
to know exactly how to handle him. I took the caregivers with me
for all his appointments, 2-4 a week. I was not prepared to send him
with them. I would break myself from home and go to the office,
keep up with some meetings or run an errand. This was my strategy
for refreshing me and having the energy to manage a million things.
On Fridays, I went to teach dance to children which was my mo-
ment of meditation. On Fridays we did not have a caregiver, our
friends wanted to spend time with N. One started teaching him to
play bridge, one would watch tennis on TV with him, and one took
him out to eat. These acts of kindness played a major role in his
healing and mine as well.
Physical therapy was scheduled three times a week for his shoul-
der. N knows every nerve and muscle in the human body and taught
the therapist a few things. He could not lift his arm more than 30
degrees. Heat pads and pain medication helped. The therapists were
wonderful. Under the guidance of Dr. Mehta, Justin, the therapist
who worked with N, was very efficient, kind and thoughtful.
When N’s diagnosis was made, my mode was to prepare for our
lives for the years to come. Downsizing from this huge home and
vast acreage weighed on me heavily. In our home I was the indoor
person. The furniture, décor, meals, social calendar, keeping up with
the extended family, gifts were in my portfolio. Outdoors, appliances
and finance were N’s portfolio. Early in January, without my knowl-
edge N had ordered new computers. I had to get a technician to
help switch the computers. N told the technician that all the data
was backed up which was not the case and we lost all the old data.
I had no idea about the well, pump, rain water storage and a zillion
other outdoor things. My gut feeling was to just run from the place.
I thought that we should look at assisted living facilities. This was
an education in itself.
My introduction to an assisted living facility came as a phone call
from one of them. The long-term insurers, the caregiver organiza-
tions, assisted living facilities all seem to have some network. The
assisted living facilities that they are building these days have inde-
pendent living homes in the same complex. You cannot buy them,
you rent. They do not provide any assistance, you will have to hire
assistance depending on the need. To stay in an assisted living apart-
IN REAL TIME
ment one must qualify. If a couple has to stay together they must
both qualify, in other words you must have a doctors certificate in-
dicating the need for assistance. In these the resident will be provided
with three meals a day and will be taken to different activities, med-
ical appointments and some outings. The resident can freely go in
and out of the apartment. They also have something called memory
care units. These are similar to assisted living except the resident
cannot wander away beyond a certain area. The residents in both
live by themselves. There is no cooking facility in these units. The
independent homes appealed to me in case we need the assisted liv-
ing so the transition would be seamless. The facility we chose was
under construction.
N’s Psychiatrist is a wizard. I was with N for almost all his ap-
pointments. Dr. Schillerstrom always managed to convince N to
make changes in his medications or to take some that N categorically
refused to take because of the side effects. He was also not keen on
loading multiple medications. N was placed on two medicines, one
to help with sleep and the other an anticonvulsant which is also a
mood stabilizer. I was determined to make life as normal as possible
for us. I took N with me everywhere I went; grocery shopping, lec-
tures at the health science center, shows and restaurants. I avoided
big gatherings at people’s homes, weddings; temple and other events
where too much interaction was needed. Not being cooped up in
the house was very good for me as a caregiver. When I met close
friends I shared N’s condition with them. We had a steady stream
of relatives who visited us. This was good for N. In the midst of this
I had to undergo cataract surgery as night driving was becoming dif-
ficult. In May 2016, I had the right eye operation and our son was
with us. N came to the pre-op area and talked to the anesthesiologist
explaining how sensitive I am to any sedative. It gave me a glimmer
of hope. On June 17, 2016, N said to me “I am sorry, I have not
brought flowers for you as I cannot drive to HEB.” It was my birth-
day. Through my tears I saw the immense sorrow on his face and I
knew my N was struggling to emerge from a deep ocean where fate
had drowned him.
Rajam Ramamurthy. MD
Professor Emeritus, Department of Pediatrics
UTHSCSA
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