PART ONE:
THE NEED FOR MORE CARE
In April 2021 Diane and I moved
into a 2-bedroom apartment in an assisted living facility. Later that year, the Resident’s Meetings and
Town Halls were re-started after the Covid pause. I volunteered to facilitate them. During Resident’s Meetings, I listened to other
people describe the problems they had with the care staff, often having to wait
an hour or more for a response to their calls for assistance. I cared about how these residents were
suffering. In the next Town Hall, I asked
the Director of Nursing to respond to their concerns. Luckily, since I was serving as Diane’s
caregiver, the slow response time didn’t directly affect us.
As time passed and Diane’s dementia
slowly worsened, her care became more complicated. She required more help getting dressed and
undressed. She became incontinent needing help to take
off a soiled napkin and replace it with a clean one. She seemed to want more reassurance that I
would be there to help her. Even when I
sat in my office just around the corner from where she watched Turner Classic
Movies, often I could hear her ask: “Are you there?”
I needed some downtime. Early in 2023, I hired a home health agency and
scheduled a companion to come sit and watch movies with Diane two afternoons a
week for three hours. It doesn’t sound
like much, but even that felt like it gave me some freedom. I could run errands, go shopping, or visit
friends without worrying about Diane.
On Wednesday April 26, 2023, when
the physical therapist brought Diane back from her exercise she told us two
things. First, that Diane was having
shortness of breath. Second, she pointed
to Diane’s legs and asked: “Did you realize that one of her legs is
swollen?” In retrospect, I found it hard
to believe that I hadn’t noticed it earlier. From her toes to her buttocks, her right leg
was bigger than the left one. I immediately
notified our primary care, and she ordered an ultrasound of the swollen leg to
check for blood clots. The next day we
went to Boone Hospital. No clots were
found, although they did identify a Baker's Cyst behind her knee.
We didn’t know what to do
next. Since our primary care didn’t work
on Friday, we went to the Convenience Clinic.
After waiting two hours, the doctor took one look at the swollen leg and
said: “You need to go to the Emergency Room.”
After lunch, we went to the ER, and, after sitting in the crowded
waiting room for four hours, they gave us a diagnosis of lymphedema. Roughly speaking that meant the cause of the
swelling was the result of the lymphatic circulatory system not being able to
clear away any infection or detritus that needed to be eliminated. It was theorized that her lymphedema may have
resulted from the bladder cancer Diane had treated the previous year.
I woke up the following Sunday
with a sore throat. I worried I had been
exposed to Covid in the ER waiting room.
I asked to be tested, and was told the result was negative. Ellen stopped by the following Tuesday May 2
and noticed that both Diane and I were coughing. She asked the care staff to test both of us
for Covid. This time we both tested
positive and entered quarantine in our apartment, as did Ellen in her home. Diane and I both took the Paxlovid pills. We spent the following days feeling
tired. I felt shaky on the inside and
had a slight headache. A friend dropped
off an oxygen level tester. Our meals
were brought to our room through Friday.
Diane developed diarrhea perhaps because of the Paxlovid or the
different diet while we were unable to go to the dining room.
One night during the week of
Covid, I finished getting Diane settled in bed.
I sat beside her and could tell that she was in the mood for a serious
talk. Over the past few days, she had
been asking me where I was going to “put her.”
She was aware that she needed more and more help and that it was
starting to wear me down. She was my
intuitive caring wife. I just told her
that when the time came, she would need to move to memory care, but that she
would still see a lot of me. We would
decide together when that time came. She
said she wanted me to know that she didn’t want me to wear myself out taking
care of her. She shed a few tears, and I
held her close. The fact she was aware
enough to bring up the topic and talk about it told me that the time was not
yet right.
We were really happy to be out of
quarantine so we could go down to the dining room for breakfast Saturday
morning May 6. We both used borrowed
walkers for the long walk down our hallway to the elevator. We regained our strength after a couple of
days and stopped using the walkers even though we had to go slowly, stopping to
rest along the way so Diane could catch her breath.
Because of the increased size and
weight of her leg and her residual Covid weakness, Diane started having trouble
standing, getting up from the bed or lifting her leg to get back into bed. She had trouble lowering herself onto the
toilet, even while holding onto the grab bar.
I tried to help with these tasks, but I don’t have a strong back. She complained of lower back pain after she
dropped on the toilet seat too hard and re-injured her lower back.
That Saturday, I also talked with
the Director of Nursing, B, about increasing Diane’s level of care. I told her about Diane needing more help and
the talk we had. She told me the best
thing I could do was increase her level of care, taking some of the burden from
me. She said it would also help
acclimate Diane to receiving help from others.
She proposed that the care staff help her dress and undress, shower, and,
every three hours, come to the room to help her go to the bathroom. As soon as she had time, she would enter
these details into the computer to make it official. Meanwhile, I was instructed to use the
emergency pull cord for help. She would
order a call bracelet sent to our apartment.
That night, I started using the
pull cord in our bedroom to summon help about every three hours or whenever
Diane woke me up to say she needed to go to the bathroom. The cord was on the other side of the bed so
I had to get up and walk around to the pull cord, before I could go lay back
down and wait. After this, I never again
got a full night’s uninterrupted sleep. Diane
didn’t like having the care staff instead of me taking care of her, but she
cooperated. Astonishing our friends, she
even let a man undress her for bed.
The next Sunday, a very nice care
staff came to shower Diane. Of course,
it was a big intrusion into Diane’s personal space. Diane roundly cursed me for not doing it
myself, but she was nice to the worker.
I didn’t take Diane’s remarks to me seriously as she always complained when
I told her it was time to shower.
We had an appointment to see our primary care on
Tuesday May 9. First on my list was the
lymphedema. Ellen had discovered that
there was an Occupational Therapist (OT) on the ground floor of Boone South who
was certified to work with lymphedema patients.
Our primary sent OT a prescription for Diane, made a referral to a
gastroenterologist specialist for her diarrhea and ordered a chest X-ray. Diane was having a persistent cough and the
X-ray was to check if there was any problem with her lungs. At the conclusion of the appointment, we
immediately went downstairs for the chest X-ray and also made an appointment
with the Occupational Therapist for the next day.
It was difficult getting used to
the care staff coming into the apartment during the night. I knew I wasn’t getting enough sleep. I saw the nursing director when we were at
lunch on Wednesday and asked her when we would be getting a call button
bracelet. She said she was on her way to
a meeting where she would see the maintenance man, and she would remind
him. It was in our room later that
day. At 2 p. m., Diane had an
appointment with the Boone OT for an hour and a half evaluation of her
lymphedema.
We learned the next day that the
assisted living nursing director was no longer at the facility. A disagreement among managers had gone full
circle. The week of April 27, the
previous Executive Director (ED), was given her walking papers. The story I heard was that the nursing
director, B, threatened to quit because the ED wouldn’t allow her to fire a
couple of care staff employees. The
nursing director believed their behavior was such that keeping them on staff could
result in her losing her nursing license.
Evidently, the corporate nursing director supported B, the local one, because
after the ED left, B decided to stay. However,
now the corporate management believed there was over-staffing at our facility
and wanted to cut the hours of care staff. B refused to do so which resulted in her
departure on Wednesday May 10. A few
weeks earlier, the care manager had resigned, so now we had no local nursing
director or care staff manager.
It was probably not surprising that the care
plan for Diane was not working. Not only
was care staff not checking every three hours, but help was very slow arriving
when needed at night. On Friday May 12,
I met with L, the corporate Resident Care Specialist, and she said she would
get our plan into the computer, something that B had not accomplished before
she left.
Friday the 13th, I
pressed the call button at 11:15 p.m.
The woman who arrived an hour later at 12:15 a.m. told me she had been
called into work because there was no one to help assisted living residents. She did a great job. We saw more of her the following night, but
then she said she would be off a few days.
We never saw her again.
Saturday, I took Diane to a
Convenience Clinic because of her persistent cough. They prescribed an antibiotic and cough medicine. I was feeling stressed about the lack of
consistency in care for Diane. I started
contemplating a move to another facility with a different corporate owner and
made an appointment for a tour at a nearby facility on May 23.
Monday morning the 15th,
Diane had an appointment with a doctor at Columbia Orthopaedic about her sore
back. Our friend Dottie met us
downstairs to help. I dropped her and
Diane off at the front door to get in line for check-in processing. At this point, Diane was moving slowly, but
she was walking unaided and not noticeably out of breath. The nurse was not happy about how slowly
Diane walked and made her use a wheelchair for the trip from the exam room to
get X-rays. They scheduled an MRI for
the following Monday at Boone South.
That evening, our call button was
promptly answered at 7 p.m. by a care staff employee. She was friendly, did a good job and told us
she would be back at 10:30 p.m. However,
by 10:45 p.m. we hadn’t seen her so I pushed the call button. Not only did she not show up, but no one else
did either. At 11:30 p.m. I finally gave
up and, with discomfort, helped Diane get out of bed to pee. Her incontinence pad was very wet.
After returning Diane to bed, I
decided to investigate. I put on a robe
and walked barefoot down the hall to the activities room where I found two care
staff employees sitting in the darkened room.
One claimed to be trying to call more care staff into work. The other said her shift started at 11 p.m.,
but she hadn’t had time to begin work. I
asked whether she had noticed our call button go off. She looked at her pager, scanned it and
didn’t see our room number. She then got
up and went to the nursing station where there was a computer that kept a log
of call button activity. Then she
realized we had pushed the button some time ago and hurried to our room to turn
it off.
The next morning, I pressed the
call button at about 5:00 a.m. No help
arrived by 5:30 a.m. Diane told me that
she felt like she was going to have diarrhea, so I jumped out of bed and
painfully lowered her legs and helped her stand. No one had come in response to the call
button by the time we left for breakfast at 6:50 a.m.
The afternoon of Tuesday May 16
was the monthly Town Hall. The corporate
staff who had been filling in for several vacant managerial positions should
have all been present. However, the only
one there was L, the Resident Care Specialist. As facilitator, I took the opportunity to talk
about the lack of care Diane and I had been receiving, giving the examples I
wrote about above. Then I asked if any
other resident would like to say anything.
Only one was brave enough to speak up.
Then L gave the corporate explanation of the problem and told us to call
her directly if we had problems like the ones I described and she would respond. I didn’t find her talk comforting or
convincing.
My thinking about moving from this
facility was becoming more serious, but I was not eager to do so. We had made so many friends and been very
comfortable in our apartment. Not only
was I Diane’s caregiver, I had also taken a role in caring for the other
residents. However, almost every day, I
was feeling sleep deprived. Diane wasn’t
happy about her care. I wanted to be
able to give them a chance, but the odds of that happening were growing less
and less. My first thought had been about
a short move to a nearby facility, but, after looking over their website, that
seemed like a step in the wrong direction.
They did not have two-bedroom apartments, and the rooms were quite
small.
Ellen changed the tour to another
facility on Thursday May 18. I was
picked up by Ellen, with Chris and Mary F also in attendance. I recognized that they were doing an
intervention. They were determined to see
me move. At the other facility, a
saleswoman took us around and showed us the vacant two-bedroom apartments which
were at the end of a hallway across from each other. The Administrator was with us, and we all sat
down in the larger apartment. Ellen had a
written list of questions, which I supplemented with some of my own. I asked many questions, particularly about
staffing and levels of care. Ellen also
asked some of her questions. I was
satisfied with the answers, but still wasn’t ready to commit to moving. Ellen pushed me to make an appointment on the
following Monday morning so Diane could see the apartment and be evaluated.
Saturday night, May 20, Diane and
I were both tired. A nice care staff employee
helped Diane undress and get into bed at 6:00 p.m. I talked to her about the staff
shortage. She explained that B, the previous
nursing director, had recruited or brought in a large number of staff and, when
she left many of them did too. Personally,
she had yet to find another job, but would leave as soon as she did. I was in bed by 6:30 p.m. thinking about what
she said. I woke up and pushed the call
button at 11 p.m. There was no response,
and I fell back asleep until 1 a.m. I
got up to pee and then helped Diane out of bed and to the toilet. Her napkin was soaked. As we were instructed in the Town Hall, I
called L to let her know about the situation.
I was up again at 4 a.m. to pee, then to get dressed at 5:30. I let Diane sleep until 6:00 a.m. when I
helped her dress. No one from the care
staff or L appeared during this time.
I took my shower early on
Sunday. I saw a care staff woman who had
previously showered Diane and asked her if she would have time later to shower her
again. That afternoon she arrived and
helped Diane undress and into the shower.
She had her sit on the small shower seat. When she was finished, she asked Diane to
stand, but not having the strength to do so, she slid down the seat and sat in
the shower. Now the problem was how to
get a wet Diane up in the wet shower. The
woman called for help. Several care
staff members showed up along with L.
While the staff were helping Diane, L spoke to me. She told me that the only way to get better
care for Diane was to move her to memory care.
I didn’t believe this was the
solution for several reasons. I had
heard the care staff on the assisted living side mention that they often had to
request help from memory care staff, reducing the number of care staff in
memory care. Also, if I wasn’t there to
observe Diane’s care, how would I know whether she was getting better care or
not. I had lost faith in the facility
and corporate management. I was ready to
move.
PART TWO:
SERIOUS MEDICAL PROBLEMS RAPIDLY DEVELOP
Before we drove to the new
facility for our appointment on Monday morning May 22, Diane had both an MRI of
her back and a CT scan of her lungs (both of which were negative). Diane liked the apartment at the new
facility, and she passed their sit-stand-and-walk screening test for
admittance. I agreed to the move. Friday May 26, the administrator came to our
apartment, and I filled out the required documents. The woman who would handle all the aspects of
our move was going to be leaving on a vacation later in June, so I had to
schedule a fast move on June 8.
Friday night and during the day
on Saturday, Diane started complaining that she wasn’t feeling well. She woke me up in the night, saying she was feeling
worse. She was ready to go back to the Emergency
Room. We were there by 5 a.m. Sunday
morning.
I helped Diane into the ER where
they quickly got her into an exam room.
The doctor ordered an X-ray of her chest. He noticed a difference from earlier X-rays
and ordered a chest/abdomen CT. This
revealed a saddle pulmonary arterial embolus, or blood clot, with evidence of
right heart strain. Diane was admitted
to an ICU unit at Boone Hospital. They
started the infusion of the blood thinner heparin through her IV. She was kept on oxygen.
For the first time in her life, Diane
was a hospital patient. The next morning
it felt wrong having to drive to the hospital to see her. Early the next day, they did a venous duplex
exam of her lower extremities. The right
side was negative, but the left side showed evidence of a DVT (Deep Vein
Thrombosis). I approved the placement of
an IVC (inferior vena cava) clot filter later that morning. Diane was kept in the ICU unit two nights and
then was moved to the Medicine floor for two more nights. Even though my sleep wasn’t being
interrupted, I was still stressed with worry for Diane and having to plan for
the upcoming move.
On Thursday, Diane was switched
to an oral blood thinner and discharged to a rehab unit (Flat Branch) at The
Neighborhoods by TigerPlace. She was unable
to stand or walk. A Hoyer lift was used
to transfer her from the bed to a wheelchair and vice versa. They used a diaper for her incontinence which
required changing in the bed. Both of
the lift and the diaper change really upset Diane. To change her diaper, they had to roll her
over on her side in the twin bed. She
was then on the edge of the bed and afraid of falling off. To get her into the wheelchair, they placed
her in a sling, lifted it up from the bed, swung her around and lowered her
into the wheelchair. Diane hated it and
felt like she was going to fall each time.
In the morning, they dressed her,
placed her in the wheelchair and took her to the dining room. I tried to be there by 8:30 a.m. to help,
although she wasn’t hungry enough to eat the unappetizing scrambled eggs. She drank some apple juice and sipped some
coffee. I picked up a protein drink at
the grocery store. During the morning or
afternoon, a therapist (physical, occupational or speech) would stop by and
take Diane to a session.
The following week, the contents
of our apartment were being packed so I needed to be there and scheduled
friends to come sit with Diane during lunch.
She still wasn’t eating much at breakfast or lunch, mainly drinking
juice and the protein drink. Thursday,
the movers took all our furniture and boxes to the new apartment. The furniture was brought in and the boxes
were all unpacked the same day. At this
point, the plan was for Diane to recover enough strength in rehab so she would
be able to join me in our new apartment.
It was looking like it would be a long time before that happened, as the
rehab was off to a slow start.
Friday June 9, I started noticing
that she was doing little hiccups and coughs.
I wasn’t sure what it meant, but it didn’t seem right. Saturday morning June 10, I was concerned
enough that I went in search of a nurse.
The one in Diane’s unit had disappeared, but I found one in an adjacent neighborhood. When she was able to come over and see Diane,
she began by taking her vitals. She
raised the upper body part of the bed to listen to Diane’s heart and
lungs. When the nurse pushed on Diane’s
back to straighten her up, Diane started projectile vomiting. It went on and on, the emesis filling the
bedspread. It looked like everything she
had swallowed the preceding week. The
nurse and I agreed that she needed to go back to the hospital. The nurse called for an ambulance.
I followed the ambulance to the
hospital. I parked and let the admittance
desk know I was there for Diane, but I still had to wait a long time. When I asked how she was, I was told they
were busy doing triage. They finally
called my name and took me to Diane’s room.
She was on an IV and there were
barf bags aplenty lying on her bed. That
was good as I needed to use one to catch some more vomit, what they called
coffee-ground emesis. I was surprised to
see that she was on a Foley catheter.
Evidently, a urine sample showed that she had a bladder infection (which
was not present when she was discharged from her recent hospital stay) and some
blood in the urine.
The ER doctor was doing a
comprehensive workup. He ordered a chest
X-ray and an abdomen/pelvis CT scan with contrast. This procedure showed changes from the
previous one done on May 28.
Inflammatory changes were noted in the region of the pylorus (the
opening from the stomach into the small intestine). The report stated that “Peptic ulcer disease
would have to be a strong consideration with associated gastric outlet
obstruction.” The doctor said an upper endoscopy would be
performed on Monday. A nasogastric tube
(NG tube) was put in place. It went
through Diane’s nose and throat and down into her stomach. I was never sure why it was there and it was
removed in a couple of days. She was
admitted to the Medicine floor.
I was getting discouraged. Again, Diane was lying in a hospital bed. She was back on heparin blood thinner through
an IV drip which requires a blood sample draw every six hours for testing. Her veins are deep and roll, making each
encounter with the phlebotomist long and painfully difficult.
Monday, I followed Diane to the
GI lab for the endoscopy. When the
doctor came to see us after completing the procedure, he was having difficulty
describing what he saw. He thought there
were obstructions both at the entry to the stomach and at the entry to the
small intestine. He took samples of
ulceration at the latter site, but thought he might need to repeat the
procedure in a couple of days.
It seemed to me that the results
of the endoscopy were consistent with what had already been seen on an earlier
CT scan. The pathology report on the tissue
samples showed features consistent with peptic ulcer disease. Later that same day, the hospitalist reported
that Diane was agitated and confused.
She was refusing blood work. This
did not surprise me.
The next day, palliative care was
consulted to assist with the goals of Diane’s care. This was the result of a bedside nurse’s
report that, in my absence, Diane became agitated, was starting to swing and
hit staff, refusing lab draws. Earlier, I
had seen one phlebotomist using ultrasound on her arm, trying to find a vein
she could use. I saw another spend
almost an hour on the other arm, give up and leave, and be replaced by another
who also struggled to take a blood sample.
This had to stop. When I was
consulted, I told them that it was Diane’s body and that if she was being hurt,
she should be able to refuse. I
understood the need to monitor the level of heparin if they were going to
continue that particular blood thinner.
I suggested that they use another one.
The following morning, I had a
long talk with a hospitalist whom I had met during Diane’s previous hospital
visit in the ICU unit. I told him that I
didn’t see how it would be helpful to have another endoscopy. Also, since they were saying that there was
unexplained wall thickening as well as the mass of the peptic ulcer at the
pylorus, it did not seem that there was any clear path forward for
treatment. She was already weak and not
able to stand or walk. Her Alzheimer’s
made any follow-up therapy of questionable benefit. I reviewed her Health Care Declaration with the
doctor. It stated: “After thoughtful
consideration, I have decided to forego all life-sustaining treatment if: (1)
(a) I shall sustain substantial and irreversible loss of mental capacity and
(b) I am unable to eat or drink without medical assistance and it is highly
unlikely that I will regain the ability to eat and drink without medical
assistance…” We agreed that the first
condition was met because of her Alzheimer’s, but he wasn’t ready yet to
concede to the second condition. He came
back a couple of hours later and said he had consulted with the other doctors
and they had brain-stormed the treatment possibilities for Diane. Ultimately, they all agreed that because of
her weakened physical condition and the lack of good alternatives, the second
condition was met as well.
This was not the first time that
I had to deal with a loved one nearing the end of life. Twenty-five years earlier, in 1998, my mother
had been taken to the hospital. Diane
and I drove to Wichita and visited her in the hospital. I got a call in the middle of the night
saying she was bleeding out and asking if there was anything else they wanted
me to do. My 85-year-old mother, who had
been a member of the hemlock society, was adamant about not taking heroic
measures at the end of life. I only
hesitated a minute before replying that they should not take any
life-prolonging measures. She died that
night.
It was a more difficult decision
with Diane. She was younger, my wife, my
life-partner. What would the rest of my
life be like without her, even the person she had become with so much of her
mental abilities lost? She still had her
moments of lucidity. For example,
several months earlier a box of flowers arrived at our apartment from
Hawaii. I was puzzled about who sent
it. Diane immediately piped up and said,
“Your cousin who lives in Hawaii.” She
figured it out quicker than I had. When
I was exhausted with the effort of caring for her at night, she could still
sympathize, even though at the same time she could be quite demanding.
The part of me that wanted to
protect her, even from herself, was required.
Diane was a force of life, full of passion. During the most recent discussion I had with
her about the balance between the quantity of life and the quality of life, she
expressed how she still wanted to live.
This was much different from the pre-dementia discussions we had on the
topic. Now it wasn’t just dementia. The medical problems were very serious. Her health had already deteriorated. Even if she could survive the medical
procedures that might be necessary to solve the problem with the obstruction to
her intestine, she would more than likely spend the rest of her life in a
wheelchair or in a skilled nursing facility.
I knew this wasn’t how Diane would want to spend the rest of her
life. I know she also wanted a good life
for me. I made the decision to ask for
comfort care, the hardest decision in my life.
There were no more painful needles.
Ellen and I met with the doctor
and the palliative care nurse practitioner to discuss the details and clarify
the options. We decided to have the hospital
social worker consult with the social worker at The Neighborhoods to find a
private room. Diane would enter hospice
care after her hospital discharge.
By the next day, Thursday June
15, when Diane was discharged, she was taken to a simple room overlooking a
courtyard. It was in a memory care unit
which was actually beneficial as their nursing staff was experienced, stable
and well-trained. I signed an agreement
with the hospice company Gentiva. Initially
there were going to be twice-weekly visits by the hospice nurse. However, almost immediately, a nurse started coming
by to see her daily.
I could walk to Diane’s bedside
from my new apartment in ten minutes. I
spent most of the first couple of days between 8:30 and 5:30 with Diane. She could only have water by sipping on a
sponge inserted in her mouth. She
disliked the texture of the sponge, but liked the liquid refreshment. She was to receive no other food or
drink. Her stomach still hurt her and,
if she were feeling pain, her brow would furrow and she would fidget with her
bedclothes, face or hair. I would then
ask the memory care nurse to give her more medication. She could not take my word for the fact Diane
needed it, but checked her first. They
were giving her a combination of morphine for pain and Ativan for anxiety. The medicines were administered in liquid
form, squirting it through a syringe into her mouth.
On Friday morning, I sent an email to our
friends letting them know that she was in hospice and inviting them to drop by,
see her and say their goodbyes. Almost immediately,
they started showing up. Diane enjoyed
their visits as much as she had enjoyed seeing visitors at lunchtime when she
was in rehab.
Ellen quickly lined up friends to
come sit with Diane for a few hours in the day to give me some relief. On Sunday, one of those friends left a
notepad and pen so they and others could write about happenings during their
stay. Ellen brought in a CD player and
some music that Diane enjoyed: Ella Fitzgerald, Sarah Vaughan and
Gershwin. Monday afternoon the hospice
aide came and the unit aide showed her how to use the whirlpool bath. They had to get Diane out of bed using the
Hoyer lift which scared her and made her angry.
However, it was the best, and last, shampoo and bath Diane had. By Monday evening, Ellen had booked with two
home health agencies for companions to be with Diane during the night. We were aiming for 24-hour coverage.
When I got to Diane’s room
Tuesday morning, I said hello and gave her a kiss. She looked at me and said “Who are you?” Boy, did that knock me for a loop. I don’t think she was kidding, but she was
also still unhappy about having to get the bath the day before. Then later that morning, she told me she just
wanted me to get her out of there. I
didn’t know how to respond as I often heard that same request when she was in
the hospital or rehab. The pattern I had
seen was that she liked one of the people working with her and disliked
another. If she saw too much of the
latter, she was unhappy and complained.
The home health companion was scheduled to start at 5:30 p.m., but they
were late getting to Diane’s room. After
5:00, there was no one on the front desk in the lobby, and finding the Smithton
Village neighborhood was not easy. I
stayed until they got to the room and then briefed them on Diane’s care.
When I got to Diane’s room
Wednesday morning June 21, I said: “Hi, I’m Jeanne, your wife who loves you
very much” and kissed her. She replied:
“I know who you are.” I was sure she had
no memory of the previous morning. I
just had to roll with the punches.
Later that morning, Diane seemed
to be asking why she was there. I told
her the story about her recent health problems and her health care
directive. I explained why she wasn’t
getting food or drink. I said she was in
hospice and her friends were visiting to say goodbye. I was very sad, my face contorted with emotion
and shedding tears. I hoped Diane wasn’t
watching closely and couldn’t see them. She
didn’t comment, just laid there for a short time, closed her eyes and went to
sleep. In the afternoon, Larry and Carl,
having just returned from an overseas trip, stopped by to see Diane. Also, Vanessa, the woman who had been the
activities director at our previous residence stopped by. She spent some time with the memory care staff.
Thursday, it seemed like they
were giving Diane the medication more frequently. I wondered if Vanessa’s visit yesterday
helped in that regard. Diane was asleep
almost the entire time I was there in the morning. Ellen dropped by gifts for each of our
friends who were sitting with Diane as well as the memory care and hospice staff.
Friday, Diane developed a
cough. The nurse said it was from mouth
secretions that a new medicine would dry up.
Of course, this was the beginning of the end. It couldn’t happen soon enough for me. I had heard other people talk about how the
person dying could still give loving looks.
Diane had that potential with those big brown eyes. I tried my best to imagine I was seeing her
loving thoughts. However, sometimes I
let myself feel guilty thoughts. Did I
do the right thing, make the right decision about her care, about her life? At these times it seemed like the looks were
at best showing a lack of recognition and at worst recrimination. I had to remind myself that she was dying and
on a lot of pain medication. Oh, how my
heart went out to Diane. How could she know
or understand what she was going through?
It was all so overwhelming.
To keep my sanity, I had been
revising the draft obituary Diane had written years ago at my request. Ellen and her crew of editors had been
reading it and making suggestions for revisions. I looked for a picture that would show her
full of life and found one that had been taken at an event held with a group of
women whose friendship Diane valued. I didn’t
think I could manage the burden of making the arrangements for a gathering of
Diane’s friends. Two of our friends
volunteered to do so, consulting with me as needed.
Saturday and Sunday more friends visited
to say goodbye. Diane was asleep most of
the time now since the morphine doses were more frequent. Saturday one of the nurses said she thought
Diane would die in the next 24 hours.
She was breathing faster and higher in the chest, but it was still steady. Monday, the memory care nurses started
checking on Diane more frequently. In
the afternoon, Ellen took me to sign the forms at the cremation company and pay
for their services.
The next morning, as usual I was up at 5 a.m., got dressed and was in the kitchen starting the coffee when I got a text from Ellen saying she was in the hall outside my apartment. I opened the door and there she was holding the picture of Diane as a young girl that I had taken to her hospice room so visitors could be reminded of what a vibrant person Diane was with those big brown eyes.
Seeing Ellen there holding that
picture told me that Diane had finally passed and been released from the long
days of suffering during her hospital, rehab, and hospice stays. I only felt relief and probably said
something like “Thank goodness!”
It hadn’t been meaningful to me
to be with Diane when she died, but it was important to Ellen. She had believed that Diane was going to die
soon. Monday night she stayed with the
home health companion by Diane’s bedside until Diane died at 3:15 a.m. Tuesday
morning.
I am now left with such
conflicting emotions. On the one hand, I
feel bereft by the absence of both Diane’s powerful physical presence and the
emotional companionship she was still able to provide. On the other hand, I am becoming accustomed
to the freedom of thought and action that I now have. I know it will take time for these feelings
to reconcile, and I am also sure they will never be completely resolved.
Link to Diane Booth Obituary:
https://www.columbiatribune.com/obituaries/pclm0518994