This
first story is entitled The Descent into Dementia. I had been writing about all the travels
Diane and I took together. My writing
coach was tired of reading about these trips and asked me the simple question:
“Why did you stop traveling?” That got
me started writing about the events that happened on our last trip.
Then,
friends reminded me of other signs of Diane’s changing behavior. I starting putting it all together as I describe
in the following short story. It includes
the path I took to deal with the occurrence of this disease in my spouse. It is not the path that everyone who has a loved
one with dementia will follow. However,
many of you will encounter other challenges in the aging process that require
forging your own path. I wish you luck
on your journey.
You can click on one of the chapter headings below to go directly to that part of the story.
ACKNOWLEDGEMENTS
During my working years, my writing was in the passive voice for research and technical purposes. Many friends have helped me learn how to write in an active voice. Mary Bixby started the ball rolling as my writing coach with the support of her wife Chris Wilson. I met Ellen in 1979. Not only did she become my friend, but I also asked her to be my ‘little sister,’ and she agreed. She and her beta team of editors, Gale, Shellee and Beth, have improved the narrative in countless ways. Sharon Kinney Hanson gave me the push to go public as well as providing some editing examples that were invaluable. Aleksandra Kinlen with the State Historical Society of Missouri provided information about past events and found the pictures. Other helpers include my sister Earlene Baumunk-Cancilla, Mary F., countless supporters, former staff and board members of Planned Parenthood.
PREFACE
What follows is an intensely personal story
of one couple’s encounter with dementia.
It could not be written during the early stages. There was a growing awareness of changes, but
the reason for them was unknown.
Recording their occurrence didn’t seem important at the time. Therefore, this story is based on the reflections
and memories of me and my close friends.
I am thankful for their input and support.
Diane valued her personal privacy. For 15 years, she held positions that placed
her in public view. At home, she didn’t
talk about other people’s personal lives and didn’t want people to know about
hers. So, how dare I now share publicly
the intimate details of our lives together and especially stories that would be
embarrassing to her? How could that
possibly be right?
I have examined many aspects of this
question. I have considered Diane’s
family. They do not live nearby and are
not in communication. Diane does not
have a phone or electronic device of any kind.
She has little memory of her previous life, although she does recognize
friends. She always had a social worker’s
concerns about other human beings. She
was, and is, a kind and loving woman.
I hope that by me being frank and open,
other people may recognize similar instances in their own lives. Our story may help others find the courage to
take action. It may just provide comfort in knowing that
others face similar day-to-day challenges caused by dementia. It may
increase understanding of this disease.
I am now Diane’s caregiver. It is my responsibility to make the decisions
for her. My decision is that sharing our
story, in all its personal aspects, may be helpful to some people and can no
longer harm us. I think this would have
gratified Diane, the social-worker.
THE BEGINNING
Introduction
In 1945, Diane Booth was born in Newark, New Jersey. She received her undergraduate degree and Masters
in Social Work from Rutgers University.
After working in a New Jersey welfare office, she moved to Jefferson
City, Missouri in 1977 to take a position in state government. In 1979 she moved to Columbia when she was
hired by Hank Waters, Publisher of the Columbia Daily Tribune, to be the
Executive Director of the Job Center.
She parlayed her success there into a position as Executive Director of
Planned Parenthood of Central Missouri (PPCM).
During her tenure from 1986 to 1994, she made the organization a vital
part of the community. She endured
protests and even an invasion (see photos above). A former board member commented on the above picture
of Diane: “The photo is so typical. I
love it. Diane out front in full
leadership style – hands on hips just daring any opposition to come closer.”
In the first of two fundraising highlights,
Diane brought to Columbia Faye Wattleton, the National CEO of Planned
Parenthood Federation of America, the first African American and the youngest
to hold the position. PPCM organized an
event featuring the film stars Sally Field and Kate Capshaw and writer/director
Tricia Brock. Diane was able to use
municipal funds to form ‘Interact – a Teen-to-Teen Theatre’ which gave skits in
many schools in Central Missouri. Diane
chose her talented staff carefully and, with her dynamic leadership, they
accomplished amazing things.
In 1992, when I was 51 and Diane was 46,
we began our committed relationship. We
were legally married in 2013. After
Diane left Planned Parenthood, she moved in with me, and we have not parted
since. She managed our household and
worked in my business. We both had a
passion for travel. In the 29 years we
traveled together, we took a total of 43 international trips, visiting 55
countries and all seven continents.
Especially after we retired, we were active in politics, Tai Chi, and
attended movies, plays, musical events, and Osher Lifelong Learning classes. However, we now live in an assisted living
facility in Columbia, Missouri. I have
some health issues, but the motivation for moving here in late April 2021 was
Diane’s dementia. This is the story of
our journey.
I Should Have Known
In hindsight, I should have seen that Diane
was developing problems and realized they were getting worse. A friend reminded me of an incident that
happened in the fall of 2016. Diane and
I had flown to Portland, Oregon, rented a car and driven through parks in
Oregon and California before flying home from San Francisco. We returned the car to the rental center
inside the San Francisco airport. With
our belongings, we took the air train to an airline terminal where we went down
an escalator to the ground floor. I
suddenly realized I had left our flip phone in the rental car and needed to go
back and get it. Diane and I agreed that
she would wait with our belongings in a nearby sitting area. I told her I would be back as soon as I
could, but it might take some time.
Indeed, it took forever at the car rental
center. Since the car had entered the
clean-up queue, it took a while for the clerk to find it, retrieve the phone
and bring it to me. When I got back to
the airline terminal and was coming down the escalator, I saw Diane below me on
her feet and obviously upset. She was
crying and sobbed to me: “I thought you had gone away and left me!” I had no idea how to process that statement
other than to say: “No, I would never go away and leave you! I love you!
It just took them a long time to find our phone.” It took a while for Diane to calm down.
Her reaction surprised me so much that I wondered if she remembered where I had gone and why I had left her there. Had she thought more time had elapsed than really had? I didn’t push her for an explanation. I just soothed her and moved us to an outside area where we could catch a shuttle to our overnight motel.
A Slow Process
Over the rest of 2016, 2017 and 2018, I
started noticing other signs of mental decline. I can’t tell you how it happened by relating
a month-by-month, or year-to-year series of events. I can only describe happenings that indicated
trouble was on its way.
Diane was proud of her cooking. In New Jersey, she watched the Julia Child’s
TV show on French cooking that premiered in 1963. She had a large collection of cookbooks
including early ones by Julia Child and the Culinary Institute of America. When she and I first dined together in
restaurants, Diane asked me to critique the food, describing what I found to be
good or bad about each dish. At the
time, I considered it a kind of test and enjoyed her confirmation of my
thoughts. She loved to entertain guests,
cooking tasty dishes of all kinds, although she favored Italian cooking. She was happy about my collection of wines,
especially after my taste moved from the sweeter German wines to the heartier
Italian and California reds and the dryer white wines.
One of the first signs I noticed of mental
decline was in the quality of her cooking.
She evidently was not tasting the food while she was cooking it, could not
distinguish the flavors anymore or did not remember how to improve them. The food might be under or over cooked. Her cooking became simpler. She couldn’t handle the complexity of making
stir fry in a wok since it required the sequential addition of ingredients by
size. The wok was relegated to its place
on the shelf. Diane also found it
increasingly difficult to get the various parts of a meal done at the same
time. She could no longer do the timing
required and became flustered.
For a while, the food wasn’t bad, just
average, and we still invited friends for dinner. Over time, that changed. Our friends suggested pot luck instead of
Diane doing all of the cooking. Instead
of Diane cooking birthday dinners for our friends, we took them out to dinner. If asked, I presented these changes to Diane
as requests by our friends. I would just
say something like: “They think you have done so much over the years, and they
would like to make your life easier.”
I began to notice another change in her
kitchen behavior. Her usual routine was
to clean the cooking utensils as she cooked.
After she emptied the pots and pans into the serving dishes or plates,
she put them to soak in the sink while I carried the food to the table. She cleaned them after we ate. We would meet at the table, joining our
guests. At some point I realized that
the food was on the table, I was sitting down, and Diane wasn’t just putting
the pots and pans to soak. She was
actually taking the time to clean them.
Without her at the table, the food was getting cold. After a few attempts, I knew I couldn’t
change her behavior, so I started eating with the guests. Diane eventually joined us.
In hindsight, might I have had a talk with
Diane about the changes in her behavior?
Did she realize she was changing?
Another person might welcome such a discussion, but not Diane. I did ask her about the changes in the taste
of food. She simply hadn’t noticed.
By Thanksgiving 2019, instead of Diane
cooking the dinner, I picked up an order of smoked turkey and side dishes from
Hoss’s Market. At Christmas, we went to
a buffet at the Holiday Inn Expo Center with our friends Craig and Mary F. Diane was not able to fix large meals
anymore. I was deeply saddened by this
turn of events.
Another gradual change in behavior happened
at Osher classes. Diane was often asked
to introduce the speakers. Her voice
projected and she could quiet the audience with ease to signal the beginning of
the class or the end of a classroom break.
She had media training and could comfortably address a group. During classes she asked insightful and
knowledgeable questions and made cogent comments. However, as time went on, she began to veer
off the topic. I was embarrassed for
her, and I started asking her not to raise her hand during Osher classes.
A friend recalled a similar happening when
we went to see Jill Biden on March 9, 2020.
Before the start of the event, a TV reporter asked those waiting for
comments. Several volunteered to be
interviewed, including Diane. We were
not surprised that her interview was dropped from the reporting as it was a
rambling, off-center reply.
From the beginning of our relationship,
Diane wanted to do all of the driving.
However, she was headed for an accident as she was having trouble
staying in the same lane if it curved or if she was in one of two left-turn
lanes. At first, I corrected her when
she made a mistake, but that wasn’t working anymore. She
wasn’t following my instructions and I was tired of yelling at her and getting
frustrated.
After Diane drove us on a trip in September
2018, I was finally able to convince her that she was going to cause an
accident and started doing almost all the driving. She wasn’t happy with my driving and not shy
about expressing her opinion, so I tried ways of distracting her. The best one was taking a book for her to
read since that kept her eyes off of the road.
I wasn’t concerned if she drove to our
nearby grocery store. Friends asked me
if she might get lost, but that problem never developed. We were all amazed that when I was in the
hospital in March 2019, she was able to drive across town from our house, park
the car in the hospital parking garage, take the elevated walkway across to the
hospital and find my room. This ability
for her to suddenly do something well that she had been struggling with always
made me wonder about what was really happening.
When Diane moved to the Lake of the Ozarks
to live with me full time in 1994, she went from being the Executive Director
of her non-profit to the Executive Director of our household
as well as an employee in my business.
She took care of everything, including maintenance of our cars, the
house, cooking, cleaning, clerical work for the business -- anything that freed
me up for billable hours. The last
year that we lived at the Lake, her work assignment was to oversee the
construction of our new home in Columbia.
The pattern continued until I was fully retired in 2012. Then, I had time to do more of the routine
work, like cleaning the house. I hated
dusting. By June 2013, we hired a house cleaner.
There were some tasks I had always
performed. I had more prescriptions, so
I always prepared our daily pills. After
I set up connected Google calendars for both of us in 2013, I scheduled more
and more of our appointments. I managed
our Vanguard accounts. I booked our
travel and planned how to pay for it.
Diane purchased an Apple MAC Pro computer in 2013, and, as I predicted,
had trouble with the change from a PC.
She never mastered it beyond the basics.
Quicken on the Apple was not compatible with the PC version, so she
couldn’t use it anymore. I then needed
to enter all our transactions and reconcile all our accounts using Quicken on
my PC. Diane lost the ability to write
checks properly. Our house cleaner
complained when the wrong date on her check kept her from being able to
promptly cash the check Diane had written.
I started writing all of the checks and paying all of the bills.
Troubles While Traveling
In early 2019, we went on a Road Scholar
trip to Miami and the Everglades. That
trip was uneventful, but two international trips were scheduled soon
after. In April, we flew to Osaka, Japan
and joined an Olivia tour of Japan including a pre-trip in Kyoto. Diane and I stayed very close to each other,
always using our walking sticks, and carefully helping each other up and down
stairs.
While
waiting and waiting in line to get our boarding passes for our flights home at
the Yokohama (Tokyo) airport, my legs started feeling weak, so I sat down on my
big suitcase. We had spent the morning
on our feet in Tokyo, and I had not fully recovered my strength from a
week-long hospital stay the previous month.
A man in an adjacent line noticed I was in distress and asked an
attendant to get me a wheelchair. I
ended up using a wheelchair the rest of the trip and ordered one for our next
trip only two weeks away in the middle of May.
That National Geographic trip sailed
from Bergen up to the northern tip of Norway and then further north past the
Arctic Circle to the archipelago of Svalbard.
We loved sailing on our favorite ship, the Explorer -- a small ship with
a maximum of 148 passengers. Here’s what
happened the first night we were onboard.
During the afternoon cocktail hour, we met a younger couple that “took”
to us. They asked if we could have
dinner with them. At dinner, the waiter
frequently topped-off our wine glasses making it difficult to keep track of how
much we had consumed. Alcohol was free
on this cruise. As the dinner
progressed, I knew I had enough and stopped drinking, but Diane got very
drunk. I asked her to stop with no luck. I didn’t want to cause a scene the first
night of the trip. I finally convinced her to leave the table and go to our
cabin.
The bathroom was a step up from Diane’s
side of the bed. When Diane stepped out
of the bathroom to go to bed, she missed the step and fell between the bed and
that step. She didn’t seem to hurt
herself, but I wasn’t strong enough to help her get up. I suggested she roll over on her hands and
knees so she could reach up to the bed and pull herself up, but she didn’t
understand and wouldn’t try. I finally
gave up and decided to go to bed and let her sleep it off while lying there on the
carpet. We were both in the nude, as we
always slept that way.
The next thing I knew someone was bringing
Diane back to the room. While I was
asleep, she had gotten up on her feet, looking for a bathroom. Instead of stepping up into ours, she opened
the door to our cabin and walked out into the hallway, strolling naked around
the ship. A crew member saw her, wrapped
her in a blanket and brought her back to our room. Their voices awakened me. I hoped the passengers were asleep and did
not see her. No surprise, the couple we
had dinner with avoided us the rest of the trip. Diane had no memory of it the next morning.
Several days later a woman whose cabin was near ours told me Diane had tried to
come into their cabin. She expressed
concern about Diane, but I didn’t want to discuss it with her. It was then I had my first thought that we
might not be taking any more international trips.
There was one more significant incident
before we returned home. I was still
using a wheelchair at the airports. We
flew from Svalbard to Oslo and then on to Amsterdam where we would board our
flight home. I was escorted from the
Oslo flight to the first waiting area, and Diane waited with me. After a long while, I needed to go to the
bathroom. I asked Diane to push me
across the hallway and around a corner to the bathroom. When I was done, she took me back to the
waiting area, and, after a longer wait, said she needed to go to the
bathroom. I thought she remembered how
to go there and back since she took me earlier.
However, as I watched for her to return, when she came out of the
bathroom, instead of turning towards where I was sitting, she walked straight
ahead and through some automatic doors.
I had been watching those doors and never saw anyone come out of them. They only opened one way, into the
terminal. I knew she was now on her own
in a huge airport!!
Without Diane, I was finally taken to
another waiting area. Everywhere I was
parked, I tried to explain the situation and get help finding Diane or getting
a message to her. I told them she was my
traveling companion who easily got lost, and I wasn’t sure whether she had any
travel documents with her, as I usually carried all of them. No one would take me seriously. I sat with tears streaming down my face from
fear and frustration. Finally, after
what seemed an eternity, someone took me to our gate. There was Diane! She was smiling and laughing, talking with
other passengers. I didn’t know whether
to kiss her or smack her. Evidently, she
had her boarding pass in her pocket, asked and was told where to go. She wasn’t aware that I hadn’t been with her,
apparently. I knew
then that whatever was happening with Diane, it was serious and needed to be
addressed.
Click on Chapter Headings to return to the top, or continue reading.
Diane and I have the same primary care
doctor, and she sees us together. During
two regular appointments I asked our doctor to refer Diane to a neurologist for
evaluation. Diane has well-developed,
ingrained social skills, and she communicated that she did not need an
evaluation. The doctor made no
referral.
In July 2019, our doctor finally referred Diane
for an evaluation by a speech and language pathologist. Diane was in complete denial of any problem
and angry with me for taking her to the appointment. At the check-in desk, the woman asked how
long she had symptoms. Diane replied:
“There are no symptoms. I am fine.” That
was over my reply: “A few years.” Diane was
not happy to be there and did not invite me to join her in the examination room. The specialist performed an evaluation of her
“memory and cognitive impairment” and reported that Diane’s performance fell
into the range of “dementia syndrome.” Her
report expressed concern about Diane’s abilities to drive and to manage her
medication and finances. By this time, I
was doing all of these tasks anyway, but I could see that I was going to have
to be doing much more in the future. As recommended, Diane’s primary doctor started
prescribing Donepezil for memory decline.
Diane wasn’t happy about the report, couldn’t deny what it said, but
still minimized the seriousness of its conclusion, saying: “Oh, it’s not that
bad.”
Before committing to a relationship with
Diane in 1991, I insisted that we agree on its legal aspects. On my
first Olivia cruise in 1990, I heard the author Karen Thompson discuss her book
Why Can't Sharon Kowalski Come Home?.
Sharon was in an automobile accident which left her brain-damaged. A
court battle over guardianship ensued between her parents and her lesbian partner. Her parents won. It was the first time I became aware of the
long-term implications of a lesbian relationship, and the need for legal
protections since we could not marry our same-sex partner in the United States.
Many years earlier, I had helped my mother create
a trust, and I believed that would be the best vehicle Diane and I could use to
protect our legal rights. We each had
our own trust agreement since we had separate assets and wills. The
structure of the trust was such that if one of us became disabled or died, our
trust could be used to support the other.
We each named the other as our
first successor trustee. That meant if I
were disabled or died, Diane would have the power to manage my assets. She was also named as my health care power
of attorney. However, it was now clear
that she would not be able to perform either of those tasks.
I made an appointment for Diane and I to
meet with our lawyer because this diagnosis made it clear that we needed to
make changes in both sets of our legal documents. I was
made a co-trustee on Diane’s trust so I could legally manage her assets and was
still the successor on her health care power of attorney. The lawyer removed Diane as the successor on
all of my documents.
I was so glad we had this legal
protection. It is important that people
not just rely on their partner to take care of them. What if something happens to the partner? We also had two friends who agreed to be our
successors. In case something happened
to the first, the task would fall to the second. We felt like we had given them enough
background information and had our affairs in good enough shape that they would
be able to step in and do the job.
Neither one of us wanted a family member or appointed guardian taking
over. Even though it required that we
think about unplanned and unwanted possibilities, I felt good knowing that
these documents protected our interests.
It will be my responsibility to make sure they are kept up to date,
although my successors also know who my lawyer is, in case they think I need
help.
The Best Laid Plans
In 2000, we built our house in Columbia, MO
to be handicapped accessible with the idea that when we grew old and needed
additional help, we would convert Diane’s office to a bedroom for a live-in
helper. I saw my mother forced to leave
her home of 35 years because she could not navigate it with a walker or
wheelchair. Diane and I planned our home accordingly, with no steps, three-foot
wide doors and a roll-in shower.
However, it never entered my mind that the health issue we would
encounter would be of a mental nature instead of a physical one.
The idea that Diane or I could develop
dementia had been unimaginable. Neither of us had seen a family member or
relative with this condition. I cringe
when someone who is attempting to sympathize with me says: “Everyone has memory
problems. I walk into a room and then
wonder why I’m there.” I now know that
they don’t really understand the extent of the mental problems involved with
dementia. If they are trying to minimize
the issue to make me feel better, it’s not working.
This story confirms that point. Diane didn’t like pets of any kind. On the other hand, I loved a cat’s
affection. Since I was living alone and
often away from home on business, I did not have a cat when we started dating. I told Diane that I would not have one as
long as she gave me all the affection I could receive from a cat. I jokingly said: “After you get Alzheimer’s
and don’t recognize a cat, I may get one.”
Little did I know how those words would come back to haunt me. (I don’t have a cat, yet.)
I was starting to question my thinking
about being able to stay in our house. The type of help we would need would be
different, and dependable help of any kind was getting more and more difficult
to obtain. Probably at my suggestion, Diane
and I toured an assisted living facility in January 2018 and later attended a
talk on dementia there by a local neurologist, Dr. Joel Shenker. In June 2019, our friend Ellen organized another
tour at the same facility for six of us.
Ellen worked at the Senior Center and thought it was important that her
older friends learn about different living possibilities as they aged. The place we visited seemed nice,
particularly the large dining room with a scenic view of trees and sky. Would we possibly live there in the future? We also toured two other facilities owned by
another company, but we didn’t like either of them.
Before I could make the decision about
moving to such a place, there were tasks I had to accomplish, such as taking
care of Diane, the cars, house and the yard.
Diane didn’t want to and really couldn’t handle these anymore. Our providers had been used to hearing her
name. Thankfully, she could still tell
me the names of the people I should talk with.
I also took on the responsibility of the
larger repairs. Over the next couple of
years, I replaced skylights and removed the plastic dome topping the center
peak of our house that occasionally leaked.
The heating/air conditioning systems were replaced with more energy
efficient equipment, and a new tankless circulating water heating system was
installed. After the interior and
exterior of the house were painted, the house looked great.
I also started downsizing. We had accumulated over 30 years of
belongings that we were no longer using and did not need. I began the downsizing by donating my old car
to the local NPR station, KBIA, since I was now the only driver. Next was Diane’s office. It didn’t matter whether we would stay in the
house or move, that room and adjacent bathroom had to be emptied. I cleared out her files and closet. I boxed up family pictures and artwork by
Diane’s mother and sent it to her niece Kelly in Pennsylvania. Some wall plaques and framed pictures went to
Planned Parenthood. Office supplies were
integrated with those in my office or given away. That project by itself took a while.
Then I moved on to other parts of the
house, clearing out our belongings, most of which we no longer needed or
used. We asked friends if there was
anything they wanted. If other people
could make good use of them, then I felt good about them having it. We
donated items to True North and used the nonprofit organization Freecycle to
donate our gardening and home repair supplies and tools. Don, next door, took our little red wagon to
use with his vegetable gardening. Our
friend Mary F lived in a residential neighborhood that had a Freecycle weekend
each month, and she set items in her driveway for other families to take. On several occasions, she came over and
filled up her little pickup truck with our donations.
I finally acknowledged to myself that we
would probably be leaving the house.
Having seen the size of the assisted living apartments, I began to
seriously limit the belongings we kept.
I gave Diane’s beautiful Mahjong set to our friend Dee Dee from Tai Chi,
since she taught a class on how to play the game and would be honored to have
it. We would not have a place for a CD
player. Therefore, I gave the CDs of the
Colorado String Quartet, founded by our neighbors and friends Julie and Lydia,
to our dear friends we were married with, Larry and Carl.
I went room-by-room going through my
office, the utility room, pantry, kitchen, dining and living rooms, master
bedroom and even started clearing out our master closet. Our friend Ellen took charge of disbursing the
clothes. She had first choice, then her
friends in Madison, WI. The rest went to
the City of Refuge and the Wardrobe in Columbia or the Agrace Thrift Store in
Madison. Ellen also identified many
items that would sell at the next National Women’s Music Festival in Madison,
whenever that would be after Covid, including the following: our Olivia artist
and women’s music CDs, feminist jewelry, backpacks and other objects with
Olivia’s name on them.
Our next-door neighbor Sharon was a volunteer
with Upscale Resale in the Broadway Shopping Center which sells donated items
and gives the proceeds to The Assistance League of Columbia. Among other areas, it supports public
education and the women’s shelter, both of which we were happy to help. Several times, Sharon packed her car and
delivered to Upscale Resale our nicest food serving dishes and other items
including Diane’s complete set of her beloved Patrick O’Brian books, a series
of sea novels set in the Royal Navy during the Napoleonic Wars. Diane had read all the books several times. Diane and I were so lucky to have good
friends pitching in to help us.
There were other belongings that we would
not be able to take with us and which could not be donated. I had at least one file folder for each trip
we had taken that contained information about the trips and places we visited,
hand-written notes I made each day, and, for the trips before Diane’s digital
camera, the photographs themselves. There would be no room for all these documents
or photos, and not enough time to digitize the information. It simply had to go. I could keep the external hard drives
containing the digital camera photos from most of our trips. I usually prepared an itinerary on an Excel spreadsheet
that summarized each day’s activities. I
had a list of our travels by year and did not anticipate ever needing the rest
of this information.
I could tell that we would not be able to
continue the way things were going.
Diane didn’t have any interest in her email anymore. Especially after
the pandemic started, Diane was happy to just sit in her recliner and watch
Turner Classic Movies (TCM). As a young
girl growing up in a small apartment in Newark, NJ, she acquired a taste for
movies. She liked all the old movie
stars. Even the list of her favorite
actors is long: Irene Dunn, Greer
Garson, Ingrid Bergman, Katherine Hepburn, Cary Grant, Humprey Bogart, Spencer
Tracy, Jimmy Stewart, Fred Astaire, Ginger Rogers, Gene Kelly, Cyd Charisse, Eleanor
Powell, Judy Garland, Julie Andrews, Mario Lansa, Jeanette MacDonald and Nelson
Eddy. A movie with any of these had her
glued to the screen. For many years we
had Ragtag theater memberships that enabled us to see as many movies as we
liked without tickets. We often saw two
movies a week, one at Ragtag and another at a big-box theater. Diane loved movies.
Even before the pandemic started, I was
starting to help Diane more with the cooking.
By April 2020, I was ordering meals to go from restaurants or picking them
up at drive-throughs, or grocery stores.
Starting in May 2020 during the pandemic, I ordered tasty meals from a
restaurant in town, Cherry Street Wine Cellar.
Once a week they delivered to our door a sack full of their pre-cooked dinners
along with directions on how to reheat and serve. I could follow most of the instructions
successfully. This service was a
life-saver.
The Caregiver Has Medical
Issues
In 2020, perhaps because of the additional
wear and tear of caregiving, I had medical issues. My back aches persisted, so I went for shots
in the spine. They only relieved the
pain for a short period, so I gave up on them.
I fractured my T7 thoracic vertebra, and the doctors injected “cement”
into it. My next bone density scan
showed a 10% decline, and spinal stenosis was noted. I was the remarkable shrinking woman. I received my first infusion with Reclast to
build up my bones in 2020.
I started having pain and tightness across
my abdominal region. This resulted in a
series of tests and procedures: 1) a test for H. Pylori bacteria, 2) an
endoscopy, 3) a right upper abdominal ultrasound, 4) a procedure that utilized
nuclear medicine imaging to evaluate the functioning of the biliary system,
including the liver, gallbladder, and bile ducts, 5) a CT of my abdomen/pelvis
area with contrast, 6) a “SmartPill” that entered my stomach and exited the
intestines, measuring how long it was in each part of the system and 7) a
dietetic consultation. The conclusion
was that even though my 79-year-old body was not operating optimally, there was
no clear reason for my symptoms. I
sought a 2nd opinion with another gastroenterologist. She said my doctors had performed all of the indicated
tests. She recommended taking Buspirone,
a medicine usually prescribed for anxiety, but which her patients had reported
also helped with epigastric pain. After
taking two a day for a while, the symptoms largely dissipated.
I saw a neurologist who specializes in
peripheral neuropathy for which I regularly take gabapentin. I was surprised when he said my right-hand
tremor was an indication of mild Parkinson’s disease, and he prescribed
Ropinirole and Carbidopa-Levodopa. Since
my father had a hand tremor, my primary doctor had always said it was familial,
or essential tremor, and had not treated it.
Diane’s Diagnosis
I was finally able to persuade our primary
doctor to refer Diane to Dr. Joel Shenker, a neurologist we had heard give a
talk on dementia. In November 2020 he
ordered lab tests and an MRI of her brain.
On February 4, 2021, he did a complete neurobehavioral evaluation. It was emotionally painful for me to watch
her struggle to complete tasks, like copy a three-dimensional box, copy
overlapping pentagons or draw hands on a pre-drawn clock face to show the time
as ten minutes after 11 o’clock. 
He asked Diane to do tasks which I could see she wasn’t able to come even close to performing correctly. He explained that her brain scan showed “severe global cerebral volume loss.” She had a neurocognitive disorder requiring oversight and caregiving, and he would give a more definitive diagnosis at our next appointment. He also said it was not caused by drinking, something I had wondered about. I felt very sad for her, and me.
That appointment really disturbed
Diane. From the very beginning, she had
been in denial about the existence or severity of her cognitive decline. Now, she could see that was no longer
possible. She was also seeing more clearly
that her care, as well as the care of the house and yard, while dealing with
the pandemic restrictions, including our dietary needs, were stressing me out,
physically and mentally. I was not only
having back and stomach pains. My
friends indicated I was being short with them, so I was no doubt being short
with her. It was only a few days after
our appointment with Dr. Shenker that Diane showed she was still capable of
some insight. Diane always wanted to be
in charge, and she told me it was time to sell the house and move. It was her saying it, not me. What a relief that it wasn’t going to be
something that I would have to force on her.
The medical confirmation of what I had been
seeing for a few years was helpful to me in yet another way. During the earlier years when I didn’t
realize what was causing the change in Diane’s behavior, I would often blame
her for her inability to perform a task and express irritation with her
behavior. Now that I knew for a certainty
that it was an illness, something she couldn’t help, I found I could be more
patient and understanding. This led to a
more peaceful existence.
When my sister was in Columbia a year
earlier for True/False, the three of us visited the assisted living facility
that Diane and I had toured twice before.
I liked it because it had a memory care unit as well as assisted living
apartments. On February 14, 2021, Diane
and I made an appointment to look at their two-bedroom, two-bathroom
apartments. One of them on the second
floor had large windows with wonderful views.
We could see the tops of tall trees along the property line with blue
skies beyond. On that Valentine’s Day, I
gave them a $2000 deposit on that apartment so they would finish cleaning it
for us. On the 26th, I signed
a contract and paid the first month’s rent.
We were probably different from most residents in that we did not pay
for additional personal care over and above the room rent of $6,675. The rent included planned activities, all
meals, Dish satellite TV, internet, maintenance, weekly cleaning, and
transportation to appointments three days a week. Having Dish satellite was important for us
since the other media companies in Columbia did not carry the TCM channel that
Diane loved. Although we would be taking
our car, the activities included trips to Walmart, Target or the Hy-Vee grocery
store. A hair stylist visited weekly and
a foot nurse who cut toenails visited monthly, both at an additional
charge. The public library brought books
each month that residents could choose from whether they were library members
or not. If they were a member, they
could request their choice of books, CDs or DVDs be delivered. We liked the fact that our facility did not
require any payment to move in other than our initial deposit. There was no lease, just a monthly rent with
30-day notice. An addendum specified they would pay up to
$500 for our move, the 6th month rent free, and no more than $500 (instead of
$1,000) a month for the 2nd person for as long as we stayed. Our fate was sealed.
On April 8, we heard Dr. Shenker’s
assessment of Diane taking into consideration her history and test
results. He stated that she had a major
neurocognitive disorder with moderate to severe clinical dementia caused by
Alzheimer’s disease. He added a
prescription of Memantine, but cautioned us that these medicines could only
slow the decline in memory, but not stop it or cure the disease. He also advised absolutely no more
alcohol. Neither one of us has had a
drop since.
I felt we were taking the right steps, but
even with the move, the years ahead would not be easy. I could focus on caring for Diane knowing we
were going to be in a safe, protected environment, and I would not have to also
deal with all the responsibilities of home ownership.
Selling the House
After we made the deposit on our assisted
living apartment, I needed to sell our house.
The title was in the name of my trust, and I would be making all of the
arrangements. From the first meeting
with Carol and Jackie from House of Brokers on March 1, 2021 it was only two
weeks before the house was on the market.
The pictures of the house were taken on the 9th, and I signed
the sales documents on Wednesday the 10th. Agents showed the house multiple times on the
following Friday and Saturday. We always
left the house to make it more comfortable for the buyers to be there. Columbia’s
real-estate market was hot, and within a week we received a signed full-price
cash offer with a deposit and no contingencies.
Of course, we accepted.
Then an unexpected event happened that no
seller wants to experience. Our broker
called to say that the buyer had fallen very ill and was cancelling their
offer. The timing was terrible. The city was emptying for spring break at the
University, plus potential buyers were leery about a house that had to come
back on the market. Fortunately, a couple
who had previously made an inadequate offer was able to increase the amount of
their approved mortgage and we accepted their offer. We were so happy that they were musicians as
we were strong supporters of the Missouri Symphony Orchestra and the Odyssey
Chamber Music Series. She was a flute
professor at the University and he was a violinist and Chief Conductor and
Artistic Director of the Mexico City Philharmonic Orchestra. He was also the
Host and Executive Producer of the PBS miniseries Now Hear This.
Of course, we had to deal with the process
of house inspections and resolution of the findings. The
proceeds from the house were much less than the cost of buying the land and
building the house in the first place, but that was okay. Diane and I had loved living in that house
for 20 years, and it was worth every penny.
The Move
While all of this was going on, I was also
preparing to move. The following
narrative is a detailed description of the process and includes many local
details which my Columbia, Missouri neighbors may find useful. It shows how I was able to dispose of long
held belongings and acquire new ones.Since I had put down the deposit on Feb.
14, I had to figure out how to furnish our apartment. I planned on one bedroom for sleeping and the
other for my office. Diane would sit and
watch movies in the small living room. I
knew Diane would need a good TV, so we went to Best Buy to buy one. The maintenance man mounted on the wall of
the living room opposite the location of the recliners.
Our lovely bedroom set with its king-size bed was too large to take with us. My friend Mary F recommended a trip to JC Mattress in Jefferson City and took me there on March 8. It was a good trip. I didn’t realize the negative effect that the pandemic was having on the supply of furniture. Fortunately, I was able to find a queen-size bed with head and foot-board, matching nightstands and chest-of-drawers that were in stock. I also ordered a mattress with bunk board instead of box springs making the mattress lower and easier for us older women to get into and out of bed. On a second trip, I purchased a loveseat with pillows. On each side of it we placed our beloved frog-like wooden stools, named Thelma and Louise.
I felt perplexed about what to do with the
artwork displayed on the walls of our house.
We wouldn’t have room for all of it in our new apartment. Our friend Larry gave me some useful
suggestions. I called Hannah at the
Sager/Braudis (now Sager/Reeves) Gallery and was delighted to hear that the
gallery was scheduling an online silent auction of artwork owned by Columbia
art collectors. COVID was producing many
interesting side effects. She even
offered to come pick up what we had to offer on April 15. We
gave them several items including a magnificent 67-by-61-inch acrylic
dot-painting by an Australian Aboriginal woman that we purchased in Caines,
Australia and shipped home in its original frame. It graced our living room wall for 20
years. We also had three watercolors and
one print by the American artist Sara Steele and two bronze and one ceramic
sculpture by the American sculptor Robert Bussabarger. The
gallery sold the Australian painting, one of the bronze sculptures and one of
the Sara Steele paintings (50% commission).
The rest are still for sale on the artsy.net website. Melissa of Melissa Williams Fine Art took
two large rugs from Peru and Ecuador we used as wall hangings which she was
able to sell (40% commission).
Even though we had given away many of our
belongings, we still needed an estate sale.
Betty Hoyt scheduled it for May 8th and 9th,
letting us know that we had to have everything we didn’t want in the sale out
of the house before then. We scheduled our
move on April 26. The only furniture
the movers took were two recliners with foot stools, two small chairs, a
bookcase, two end tables on rollers, and two office chairs. Friends Phillip and Richard had already moved
most of my computer equipment. Until I
could get a new office desk, I used two card tables and a storage basket. As I packed up and took small items over in
the month before we moved, I discovered just how few items we really needed to
take for our bathrooms and the kitchen.
On one trip, Diane helped me carry the
stand for our dragon. Our Denver friends
were visiting us on April 12, and we wanted them to see where we would be
living. They helped move our cherished glass
dragon, our constant companion for almost 30 years. Diane had given it to me for my birthday the
first year we were together. On the
drive there, Karen carried the dragon and Joe the large manzanita root into
which it fit. They set it on the stand
in our living room and felt good about helping it be in our new home. Later, our friend Mary F later hung a green
cloth on the white wall behind the glass dragon to show it off to better
effect.
My sister wanted to visit us one more time
while we were still in our house. She
flew into Columbia on April 13 for a two-week visit. She let us and our friends know that she didn’t
think we were doing the smart thing by leaving our house and moving to an assisted living facility, but by the end of her visit, she understood why it had to happen.
While she was here, I asked Earlene to help
me with one more task: supervise the maintenance
man hanging the pictures in our new home.
She was a docent at the Princeton University Art Museum, and I trusted
her to do a great job. It was important
to have familiar things around us after we moved, especially to help Diane feel
at home. In the bedroom, we hung the
same two paintings over the bed that had been there at our house. On the wall at the foot of the bed, we hung
the painting of an old indigenous woman’s face from Ecuador and the enlarged
photograph Diane had taken in the Oslo, Norway Vigeland park of a sculpture of an
older couple. Viewing them gave me a
feeling of solidarity with other older people.
On the walls opposite Diane’s side of the bed, we hung two paintings by
her mother.
In our kitchen, we hung four of the framed
sets of market photographs that Diane had taken during our travels and a Sara
Steele calendar. Over our recliners in
the living room, we hung artwork from Skagway, Alaska: a framed drawing on
leather of a hummingbird inspired by Alaskan aboriginal art as were the copper
plates on each side, one carved with a raven and the other with an eagle. On the opposite side of the big window near
our dragon, we placed a long wall hanging embroidered at a women’s cooperative and
purchased at the Victoria Falls Hotel in Zimbabwe.
Outside the front door, we hung the dragon mobile we purchased at the Miami Fairchild Garden while we were there visiting our friend Paulette before we boarded an Olivia cruise. On the small shelf below it we placed our Zorn sculpture of a female dragon rider, whom I considered to be our warrior princess protector. We felt very safe surrounded by our dragons.
In my office on shelves of the bookcase are
family pictures and a framed copy of my father’s favorite saying: “Read and
Listen, not to contradict, nor to believe, but to weigh and consider. Author
Unknown.” I also included a basketball
trophy my team won in a Kansas City league in 1971 and a “Hero” award trophy
presented to me in 1965 at an IBM technical training session in which I was the
only woman.
Earlene directed the placement of a few
hangings in my office. There is a pencil
drawing of two lions drinking from a pond purchased in a native village in
Zimbabwe and a symbolic drawing of dominos falling purchased at the Havana
airport. I also kept a silk embroidery
of a woman showing a child her craft that we purchased in Hanoi, Vietnam. I enjoy looking at an Esher reptile print
that was rescued from a friend’s garage sale.
Earlene insisted I keep the large frame containing all of my diplomas
from Wichita East High School through my doctorate from Kansas State University.
Earlene also helped hang a few pictures in
our bathrooms of nude women. Diane and I
picked up the postcard prints framed in my bathroom during a visit to the
Women’s Museum in Washington, D.C. We
found the paintings hung in her bathroom setting on the counter of a restaurant
on the island of Maui, Hawaii. After
Earlene did this task for us, we bade her goodbye and she left to visit an old
friend in Wichita. I really appreciated all her help during the move.
On the final day of our estate sale, the
manager called and asked if I was willing to bargain on the baby grand piano. I said yes.
I had no place for it and didn’t know anyone interested in it as a
donation. Later that day, I happened to
be outside the house, watching as a young couple was struggling to carry the
body of the piano out the front door and down the sidewalk to the back of their
SUV. Initially I was concerned they
would drop it, but other people rushed in to help. After they got the piano to the car, I
worried how they would be able to angle it into the back of the SUV. I was happy to see them finally accomplish
it. I could tell they really, really
wanted the piano, and that made me happy.
Our dining room set, table, six chairs, and a buffet did not sell. The table, made of steel and granite, was so heavy that nobody had offered to buy it. Larry told me to contact 121 Consignment at Midway, and they agreed to take it. I met them at the house on June 4th and watched four grown men with moving experience struggle to get the top of the table out of the house and into their truck. After they placed the furniture on their sales floor and posted the pictures on the internet, they told me that although they usually delivered after a sale, they would never move that table again. Once was enough! The dining room table and chairs sold at 121 Consignment (40% commission), but not the buffet.
I was missing one more item from my old
office. I had a map of the world with
pins inserted at every location Diane and I had traveled together. Where it had been displayed was part of the
built-in office furniture. I kept all
the pins along with a new world map. I
looked online until I found a cork board the right size for the map. I pinned on the world map, labeled it “The
travels of Jeanne and Diane: 1991-2019” and put the pins back in each place we
had traveled together. I love looking at
it and being able to show it to guests.
It brings back good memories.
Click on Chapter Headings to return to the top, or continue reading.
The furniture company delivered our
purchases and the moving company brought the furniture from our house to our
new apartment. On April 26, 2021 we spent
the first night in new surroundings. We
laid in a new bed and listened to the unfamiliar noises: the ice dropping in the refrigerator freezer,
the sound of the person coming in to check on us, the noise from the street
traffic, the operation of the heating/air conditioning unit. We would soon get used to all these, but it
would take a while. No one gave us a
welcome orientation, and there was much to learn. When were the meals served? What if we felt ill and wanted to have a meal
brought to our room? How did we set the
temperature on the thermostats? When would our room be cleaned? What were we supposed to do if the toilet
stopped up or there was a fire alarm?
Each day I observed, asked questions and eventually got the answers to
all of those questions.
Fortunately, the Covid lockdown was over,
and residents were no longer confined to their rooms. Diane and I started having breakfast every
morning at a table with Bebe and Richard.
Bebe was a nice 100-year-old woman and Richard was the only Ph.D.
resident other than myself. His wife lived
in the memory care unit. He had
initially cared for her in their assisted living apartment. Would this be a pattern Diane and I would
follow? We joined Bebe and Richard
because they were the only ones in the dining room at 7 a.m. We learned from them that in 2020 several
residents had died before all the residents were vaccinated. At lunch and dinner, we explored eating with
other residents, moving around to different tables.
I didn’t ask the residents why they were
there. That seemed like an intrusion on
their privacy. I did expect most of the
residents to be here because of physical problems and many of them did use
walkers or wheelchairs. Residents used
walkers because of a lack of balance and/or a history of falling. Some physical impediments were obvious, for
example, a person with one leg, observable tremors, or leg braces. The
problem might be caused by a chronic disease, like Parkinson’s, or an
accident. I only occasionally saw the
blind woman. She stayed in her room most
of the time. There was one woman in a
wheelchair who was taken in the facility bus three times a week for dialysis. Of course, there are many diseases that are
not obvious, like heart problems, cancer or diabetes. Unlike us, most of the residents were given
their daily medications or shots by staff members.
I probably should not have been, but I was
surprised to learn how many of the residents in the assisted living side of the
facility had memory problems. It wasn’t
always obvious. After talking with
someone more than once, you might find they repeated themselves or had trouble
finding the words they wanted to say. Sometimes the brain damage was caused by
dementia and sometimes by a brain injury from falling, a car accident or even a
brain infection. Sons and daughters
arranged for many residents to move here from other parts of the state or
country and managed their parents’ care.
I went to the Alzheimer’s Association
website (https://www.alz.org/) to learn more. They defined dementia as a general term for
loss of memory, language, problem-solving and other thinking abilities that are
severe enough to interfere with daily life and stated that Alzheimer's was the
most common cause of dementia. Their
website listed no less than eleven different types of dementia.
I also learned that the residents in the
memory care unit ran the gamut from high functioning to low functioning. A low functioning resident might not be able
to use eating utensils and only be able to eat with their fingers. The staff sometimes asked families of high
functioning memory-care residents for permission to transfer them to assisted
living. I became familiar with three of
these residents and could tell that they were doing quite well in assisted
living.
Richard’s wife stayed with him in assisted
living until her dementia progressed to the point where she couldn’t swallow
food. Shortly after she moved to the memory care
unit, she was placed in hospice and ultimately died there. She wasn’t the only resident of our facility
to be in hospice. I expected we would
get used to people dying and new people moving in. Bebe died at the age of 101 in December
2022. Although I learned and remembered
the names of most of the active assisted living residents, I wasn’t close to
them. I noticed when someone who lived
near us or who had been a long-term resident wasn’t showing up for meals and
would try to check up on them. However,
because of HIPA regulations, the nursing staff was reluctant to share
information which leaves the residents wondering what happened to their
acquantice.
Our friends were very happy that we were in
an assisted living facility as they had been worried about us. We were well looked after. Diane and I became used to staff members
coming and going from our apartment. In
the daytime, it was usually to pick up our trash or bring in a delivery. At night, they checked to see if we had
fallen. I usually slept through the
night-time visits, but Diane was more aware of them. Some residents canceled these visits
entirely, and after we were never found to have fallen at night, they became
less frequent.
There were emergency pull cords in both
bathrooms, our bedroom and my office. Diane
and I did not wear call pendants unlike most of the other residents. Fairly early on, we each had occasion to pull
a cord. After breakfast one day, I found
Diane sitting on her toilet with her head and arms hanging down, unresponsive
to my voice. However, by the time staff
members arrived, she was sitting up, responsive and her blood pressure was
fine. It has not happened since.
I had a couple of occasions in the evenings
while sitting in the recliner when acid reflux symptoms sent pain to my jaw and
chest. I got up, chewed some Tums, and
sat back down with my eyes closed to wait for the antacid to work. Diane became worried and, without telling me,
pulled a cord. Before anyone showed up, I
just got up and laid down. Sure enough, even
before the staff member arrived, I was okay.
It is still reassuring to us and our friends that help is readily
accessible if we need it.
I also learned that some of the people I
saw in the dining room were not long-term residents. Assisted living often had temporary
residents who stayed in furnished “respite” apartments. They might be there while undergoing rehab
after hip or knee surgery. Five days a
week, residents could see physical, occupational, or speech therapists who
worked for an independent franchise.
Sometimes a person was here temporarily because their usual caregiver was
taking a vacation. If a furnished
apartment were available, there was also a respite room in memory care. Occasionally, I saw other people in the
facility who were daycare visitors. They
would be dropped off after 8 a.m. and picked up by 5 p.m. by a spouse, child or
other caregiver. They could participate
in the daily activities and eat here.
I think about the possibility of having to be in the hospital and worry about who would take care of Diane. Living here, I know I could call on extra help from staff if she were able to stay in our apartment. If not, I planned on her staying in temporary respite care in the memory care unit. I also know that the successor to me on her health care power of attorney would check that she was being cared for adequately.
Food and Dining
In assisted living, three meals a day are
provided. Residents are encouraged to
eat in the dining room, but they can also have meals brought to their
room. There is daily special for every
meal. For lunch and dinner, it is on a
four-week rotation. There are two sets
of menus, one for summer and one for winter.
Food items other than the daily special are available, like sandwiches,
soups, salads and other specialty items. Even before we left our house, we had started
a different eating pattern. We ate an
early breakfast, our largest meal at an early lunch time, and just a small
snack before retiring to our bedroom to watch TV at night. Now, Diane does not like to leave the
apartment except for the two meals a day we eat in the dining room. She was getting so impatient with service in
the evening when all we wanted was a bowl of ice cream that I finally decided
to just buy ice cream along with other snack items to eat in our apartment.
I had to modify our lunch and evening snack
after reviewing the history of our monthly weights. We weren’t getting enough exercise and were
gaining weight. Our room is at the end
of a long hallway on the 2nd floor.
The only exercise Diane was getting was walking to the elevator at the
other end of the hallway at meal time. I
needed to do something about it. We
still had a regular breakfast, but I learned that I could order half the lunch
daily special, instead of a full plate. I
also cut down on the size of our evening snack.
To get more exercise, I started a new routine for going to meals. We stopped using the elevator for the one floor we had to go up and down. There was an adjacent stairway with bannisters on both sides. Diane now holds onto both bannisters, and, to slow her down, I have her count the steps: 1 to 10 for the first flight and 11 to 20 for the second. Another benefit of this change was that if she started having trouble with the counting, I would know it signaled further mental decline.
What I Miss About My House
There are many things in life I miss now,
but it is not always easy to distinguish between the ones that have to do with
the change in where we live, the changes in health while growing older or changes
in Diane’s mental condition. I can
describe some factors related to our move.
I miss the feeling of being close to nature
that I had in our house. It curved
around the back corner of a cul de sac.
There were very tall windows in the rooms on the back side of the house
overlooking Hinkson Creek with 180-degree views from the northeast to the
southeast. I loved the way this enabled
me to track the path of the sun over the seasons. I enjoyed waking up and seeing the sun rise
in the East. We didn’t see the sunset,
but we did see the red bounce or reflection if there were any clouds in the eastern
sky. In my previous office, I looked out
directly on trees and was able to watch the squirrels and birds. Now, the trees are too far off. I see the outlines of birds flying in them
and buzzards floating on the breeze in the sky above, but I rarely see a bird
flying close by.
I could get picky about a few other things
I miss, like the instant hot water or the programmable thermostats. However, what I really miss is our big
master roll-in shower that had two shower heads so Diane and I could shower at
the same time and scrub each other’s backs.
Now, I have a small fiberglass shower and can’t reach my own back. Unless our former neighbors had on their
porch lights, the street in front of our house was dark at night, making it
easy to watch stellar events. Here,
there is so much ambient light outside the building that it is impossible for
me to stargaze, except when there is a bright moon or planet high in the sky.
What I Like About Our
Apartment
Our apartment is about 800 square feet, as
compared to our house of about 4,000 square feet. I think our smaller living space is a big
reason why neither one of us has fallen and hurt ourselves in the apartment. There is always a piece of furniture, a wall
or a cabinet top close by on which to catch ourselves. We have a full refrigerator and microwave,
and that meets all of our needs. Since
we are in a two-bedroom apartment, we have our own washer and dryer stacked
behind a folding door off the kitchen.
Other residents either use the laundry room on each floor or set their
laundry out for care staff to clean for them.
Our apartment provides a different view of
the outdoors. There are double windows
in our three west facing rooms and an additional single window facing south in
my office. Each window is five foot high
and 2.5 feet wide so there is a lot of sunlight. In the late fall to early spring, we have
partial views of amazing sunsets.
It is easy to keep our apartment feeling
cheery. The walls are painted an
eggshell white. Whereas we had darker
oak floors in the house, we have a light beige low-nap carpet in the
apartment. The window blinds are always
up, keeping the apartment light and bright.
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Changes to Our Morning
Ritual
From the very beginning of our life
together, Diane and I woke up to the early news on NPR and started the day in
bed with a mug of coffee suffused with warm milk. The headboard of our lovely Danish modern
king-sized bed sloped backwards making it very comfortable to lean back on a
pillow while drinking our first mug. We talked about our plans for the day or
whatever was on our minds, including comments on the news. After we were finished with our coffee, we
hugged and kissed before getting up.
I was very disappointed that the king-sized
bed and side tables just wouldn’t fit in our apartment bedroom. It took a while for Diane and I to adjust to
our queen-sized bed. When we moved in,
we tried having our first cup of coffee in bed as we did before. However, the new headboard had the usual
90-degree angle that was not comfortable to lean against, even with a
pillow.
After we got our love seat, we sat on it
for our first mug of coffee. However, it
turned out that finding a comfortable place to sit wasn’t the only
problem. Diane was no longer able to
focus on our usual morning talk; she was having trouble finding words to
express herself and just wanted to start watching a movie. To still have some early morning affection,
now after I turn on the radio, we lie in bed together, and I hold Diane’s hand
during the news.
Diane started having occasional “bad” nights. For example, she would wake up at 11 p.m. and
say to me: “Is it time to get up?” This
might repeat every two hours until it was time to get up. The next day I felt sleep deprived, and I was. A couple of nights she woke me up and said:
“There is someone out there.” Telling her
there was no one there wouldn’t work, so I got us up, turned on all the lights,
and we walked through the apartment twice before she was convinced that we were
alone. At our last medical exam, I asked
if there might be something she could take that would help with her anxiety at
night. The doctor prescribed a low dose
of Seroquel, and it seems to be working.
We are both getting more rest. If
the problems reoccur, it should be easy to raise the dose.
There are two times of the day that I am
most involved with Diane: first thing in
the morning and last thing at night. The
step-by-step rituals have changed continuously since we moved in. At first, in the morning she could
participate in the steps required to prepare our morning coffee and dress
herself using the clothes I had set out.
Then I had to start directing her actions with the coffee using words
and pointing to what needed to be done.
Now I do most of it myself while she sits and watches a movie. The same progression happened with dressing. At first, she had no problem dressing
herself. Then she would dress herself
and come stand in front of me, asking whether she looked all right. Now I remind her where her long pants are and
watch that she gets the first leg in the proper pants leg. I leave her while she puts on her socks and
shoes. When I return, I remind her to
take off her sleep shirt, put on a t-shirt and then I hold her flannel shirt or
cotton blouse so she can put her arms through the sleeves.
The same is true getting her undressed at
night when I need to cue her for each step to do next. I help her brush her teeth, instruct her to
rinse her mouth, put toothpaste on the toothbrush for her and encourage her to
do a good job brushing. When we first
moved here, she was still using her electric toothbrush, but she forgot how to
do that. Same with flossing. After a while, it became too contentious to
ask her to floss, so we dropped that task.
I know there will be more changes in the future. The constant is that there will be changes
and it will always help to have a consistent routine.
Diane used to help fill the coffee mugs and
take her own mug to sit by her recliner before starting to watch movies. Now, after getting dressed, she goes directly
to her recliner. After I get dressed, I
finish making the coffee myself and take a mug to Diane. I go
into my office and turn on NPR to listen to the rest of the news. At 6:30 a.m. I give us our pills and wash the
morning dishes and at 6:50 we leave for breakfast. I am aware that in the future I will need to
help with even more of the steps involved in her dressing and coffee preparation.
I am lucky now because I can use cues to
help Diane do things. What I mean by
that is I can use words or motions to remind her what she needs to do
next. I don’t have to do it for her. Except for her back, I don’t have to bathe
her. She can still dress herself with my
cues. I have to accept that Diane has
moderate to severe dementia and if I expect her to accomplish a task, detailed
instructions are necessary. I work hard
at breaking down each task into parts so that the instructions can be given
step-by-step. If the words or motions I
use don’t seem to work, I search for other words or phrases that are simpler or
shorter. It really helped our interaction
when I discovered that using nonverbal communication, like pointing, along with
the verbal, was very productive. It
resulted in a lot less frustration on Diane’s part which meant less stress on
my part. Repeating the same steps in the
same sequence every time is helpful.
Getting mad doesn’t work. I think
that if anyone found that happening often, it would be a sign that they needed
assistance.
Sometimes Diane reminds me of one of the sisters in the Hamish Macbeth mystery series by M.C. Beaton. Beaton describes how one sister repeats whatever the other sister says, and calls it the Greek chorus. Often, when I tell Diane to do something, like “pick up the pillow,” she repeats it word for word before doing it. It lightens my mood to think of the Greek chorus when she does this.
Routine Is Important
Diane and I have always had a defined daily
routine of when we got up, ate, and went to bed. Between having business clients on the East
Coast and Tai Chi classes at 7:30, we had always been early risers. We never stayed up for the late news or talk
shows. So, it was natural for us to have
a similar routine here.
Also, it helped Diane to be reassured that
I would take care of our daily activities.
It became more and more important as her concept of time became
confused. For a while, she still wore
her watch, but soon she no longer understood the importance of specific times. Eventually, she stopped wearing it. About two hours after lunch, she started
asking when we were going to have our evening snack. Sometimes in the afternoon she asked if she
could take off her clothes and go to bed.
She wasn’t sleepy, just confused.
I responded by telling her how long it would be before the snack or
bedtime. She didn’t get upset but liked
to know what to expect. Sometimes she
comes into my office and asks: “What’s going on?” I have found that what she wants is to know
what we will be doing next and a time frame.
I might say, “The next movie starts in a few minutes. After the movie, it will be time to go to
lunch.”
At 5
p.m. each evening, I fix her a small snack.
I sit in my recliner beside hers, and we watch streaming channels until
about 6:30 or 7 p.m. I help her get
ready for bed and tuck her in with a kiss.
After nighttime ablutions, I sit at my computer for a while before
undressing and joining Diane in bed. I
love to see her sleeping well. As has
been my lifelong habit, I read myself to sleep. I now sleep with my back to Diane, pull the
sheets over my head, and read by the light of my Nook e-reader so I won’t
bother her. Each time I wake up in the
night, I read some more. I read an
average of a book every two weeks.
Diane’s Mental Health
In the year and a half that we have lived
here, I have seen Diane’s mental abilities decline more. The changes are not in a steady straight
line. I am surprised when something she
had no problem doing the day before, she no longer remembers how to accomplish
it the next day. She is happy as long as
there are movies she enjoys watching on TV.
She still recognizes people she has known or has seen frequently. However, she does not go out of her way to be
social. She is not interested in
participating in any of the activities offered by the facility. When friends come into the apartment she
greets them warmly, but does not want to stop watching her movies. I often bring them into my office and close
the door, or we go down the hallway to a living room to talk.
Diane never knows where to go in the dining
room or sit for meals. I walk to the table
and pull out her chair. Then she’ll ask:
“Is this for me?” For over a year, she
finished her meal before me and found the way by herself to our apartment. I was happy she knew her way and thought the
autonomy and self-confidence it gave her was good. However, I started hearing stories from care
staff that they found her on the wrong floor or at the opposite end of our
hallway. I was comforted that she was in
a safe place and the staff looked out for her.
Then she lost confidence, stopped leaving on her own and waited for me
to finish my meal. I started taking a
different route back to our apartment.
Instead of leading Diane, I gave her the option of which way to go and
corrected her if she guessed wrong. For
example, at first, she wanted to go into the apartment at the end of the
hallway below ours. I asked her to read
the names on the door and showed her the stairs opposite that room. Now it seems to be an easier way for her, and
she is able to use it successfully. When
she walks through the doors at the top of the stairs, I tell her to look for
the dragon hanging outside our door.
That helps her. She is always
happy to open the door and see a home she recognizes.
A tragic loss of an ability unfolded
gradually. For some weeks or months,
Diane had trouble using her Nook e-reader.
Last year, she asked me to narrow the selection of books she was
reading. This is the woman who read
Shakespeare in her spare time when she was in high school. Just as she likes to watch old movies,
watching them again and again, she requested that I check out and put on her
Nook books that she liked to read over and over. These included the series by Jacqueline
Winspear about Maisie Dobbs, a private investigator building her business in
the aftermath of the First World War. Another favorite was the series by Susan Elia
MacNeal about Maggie Hope, a woman who started out as Churchill’s secretary and
became a spy in World War II. Note that
both series take place in England and feature a strong female character. Diane has always been interested in British
history and enjoyed our trips to the British Isles.
The first indication to me that Diane was
having trouble reading was when she couldn’t turn pages on her Nook. She would seem confused and when I looked at
her Nook, I would find that it said she had completed the book. However, I knew she had just started it. I tried putting some tape next to the place
she needed to touch the screen in order to turn a page, but nothing
worked. She finally just stopped even
trying to read. In the past, she read
herself to sleep at bedtime or would pick up the Nook during the night when she
couldn’t get to sleep. Then she stopped
using it entirely. Diane’s not reading books
was like a part of her had vanished, just ran away and got lost. I have tried giving her a hardcover book to
read, but she isn’t able to focus and quickly sets it aside. She can still read and understand words, but
shows no interest in a newspaper or book of any kind. We have several audio books. We listen to them in the car, but even then,
she doesn’t seem to focus on what is said.
The office chair where I reside most of the
day at the computer is just around the corner from where Diane sits watching
movies. I can hear the movie in the
background. Sometimes Diane talks to,
yells or laughs at the movie, and sometimes she talks to me or just hopes I
will overhear her. Sometimes she asks me to come join her. I reassure her I am close by.
I have been asked whether I can leave her
alone. I sometimes need to go to a doctors’
appointment and leave her in the apartment.
On the end table next to Diane
there is a paper with my phone number. I
have told her that if she needs me, she should take the paper to the woman
across the hall or to a staff member and ask them to call me. However, I am not sure she remembers or
understands this.
One weekend in the fall of 2022, I had a
long shopping list that required several stops.
I knew Diane wouldn’t tolerate all the getting in and out of the car, so
I went alone. When I returned, I was met
at the door, first by the daughter of a resident and then by the concierge
saying: “Diane has been down here, looking for you.” She made it all the way to the balcony
overlooking the lobby and back to our room by herself. It reminded me of when I was in the hospital
and she could go to the hospital and back by herself. It seems like when she is scared and really
wants to be with me, she can do things she normally would have trouble
accomplishing. I was gone shopping for
over two hours, she missed me and was upset.
When I opened the apartment door, she was happily watching a movie. Probably something came on earlier that she
didn’t enjoy watching, I wasn’t there to do anything about it, so she got
restless. The woman who now lives across
the hall has volunteered to sit with her, so I may take her up on that.
In mid December 2022, we were asked to attend
a concert being held at our old house.
Diane didn’t want to go, so I attended with the woman across the
hall. When I got back, Diane was on the
floor in the living room. She didn’t
seem to be hurt or unhappy. I pulled an
emergency cord and walked down the hall to tell the care staff that they needed
someone who could help pick her up. It
took a few minutes until she was up and her vitals monitored. I felt guilty that I had left her alone.
Later in December, my friend Ellen arranged
for a consultation with Debra B, an Alzheimer’s Association Care Consultant
that Ellen knew from working at the Columbia Senior Activity Center. Debra strongly recommended that I hire an
in-home care provider two to three times a week and also have them shower
Diane. When the owner and office manager
of a company that was recommended to me, Keeping Good Company, came to our
apartment, Diane stood up and angrily told them: “I don’t want you here. I don’t need you.” The
staff members and I continued to talk about their services, and I answered
questions about Diane. The two women
were so friendly and engaging that Diane quickly calmed down.
I have now signed an agreement with them
and requested that they schedule someone to be in our apartment Tuesday and
Thursday afternoons from 1 to 4 pm or other times by special request. So far, they have been very reliable and
cooperative. I wrote up a description
about Diane and instructions on how to use the TV and Roku remote
controls. The first time a companion
comes here I brief them on our apartment.
I take them in the bathroom with Diane and show them my procedure. There is an extra $2/hour because of her
incontinence (total of $32/hour). Once
someone has been here often enough that Diane feels comfortable with them, I
will ask her to help Diane shower. There
is no additional charge for helping her shower.
I checked what the cost would be to have someone shower her where we
live. It was $600/month for four
showers. Assuming a month is 4 ¼ weeks,
the cost for the companion is $816. It
seems to be the most reasonable way to go since you get more than the four
showers.
Now I have time to go to doctor appointments, visit friends or go shopping without worrying about Diane. Since she often asks me to come sit with her when I am in my office, I can tell that she seems to be happy to have someone keep her company. I also think this step will be important for acclimating Diane to other caregivers.
Diane’s Physical Health
In June 2022, just over a year after we
moved here, Diane was diagnosed with bladder cancer. In the previous six months or so, she had
become incontinent and started wearing Depends.
In caring for her, I found it best to have her tell me when she needed a
change by showing me the condition of the pair she was wearing. One time, I noticed blood on the pad. That night I examined her closely and saw
blood on the tip of her urethra. I messaged
her doctor who referred her to a urologist.
In less than three weeks, we saw the urologist, Diane had a urogram-CT,
which her urologist confirmed showed cancer by literally looking in her
bladder. He did her surgery at the
hospital later that same day. She was
sent home with a catheter and long tube attached to a urine bag. She was told to come back for its removal in
nine days that included the July 4th weekend.
It was a long nine days. As
suggested by Mary F, I sat the urine bag in a big salad bowl to make it easier
to carry around. I emptied the bag when
it got full, all while the tube was attached to Diane. I brought up breakfast and lunch for Diane to
eat in the room. The tumor fragments
were less than an inch in aggregate, and the urologist thought it was removed
in its entirety. Because of that, I
initially declined post-surgery treatment, but changed my mind after talking to
a couple of friends who had experience with bladder cancer. I decided to do the immunotherapy once a week
for six weeks in the doctor’s office. That
didn’t sound too onerous.
After going through the surgery and
treatment, I felt it was harder on Diane than I thought it would be. The
treatments weren’t that difficult. We
would stop at the front desk and pick up a urine sample jar and go to a
restroom so Diane could pee in a “hat.”
After they checked her urine for an infection, they took her to a
treatment room. The tech then used a
small catheter to inject the BCG liquid into Diane’s bladder. Diane was supposed to hold it and pee it out
after two hours. She didn’t directly complain
about the treatment itself, but she became anxious. After the first week, she asked me every
morning, “Do we have to go today?” Also,
the treatments did irritate her bladder, causing even more incontinence. A day or two after a couple of the treatments,
she had diarrhea, often in her pants making big messes of herself, her clothes,
the toilet and bathroom floor.
I had prided myself upon never having to change a diaper, but I now had the job of cleaning it all up, including Diane. It was harder on her than it was on me. She would alternate between thanking me and feeling so badly that she would say “Just shoot me.” We recently went back for an after-surgery checkup on October 17, and the doctor said the bladder looked very good. However, just going for that appointment upset Diane. She does not want to ever go through it again, and I don’t disagree with her. Who knows what in the future may affect her health the most: a recurrence of bladder cancer or the progression of Alzheimer’s?
Click on Chapter Headings to return to the top, or continue reading.
How Do I Cope?
Less than four months after moving, I realized I had to find a productive way to occupy myself while
Diane spent her days watching movies, something I would not enjoy doing with
her. How was I going to use my brain? My first task was learning how to use a
smartphone since I didn’t think a landline would work well in our
apartment. My “brother” Craig gave me
his extra Google Pixel, bought me a year’s worth of time from Red Pocket on ebay.com,
transferred my old landline number to it and I quickly became acquainted. It was made easier because I already had
Google Contacts and Calendar on my computer.
I talk with or text people regularly. I can’t really have a conversation with Diane
any more, but I converse with many other people. My sister and I talk at least once a
week. Diane stopped using the telephone
even before we moved. Her sister Susan
died in November 2018, and her two nieces, and nephew never called to talk with
her. I have occasional conversations
with one of Diane’s cousins.
By September 2021, I decided to start
writing my life story. The germ for it
was planted before we moved. The
previous year my great-niece, Abagail, was a senior at Wesleyan College. She needed to complete a project for an
archiving class so she could graduate.
Earlier, my sister told me that she thought Abagail was a lesbian. Abagail called in spring 2021 and described
herself by using words that had entered the lexicon to describe gender
identity. She asked if she could
interview me about what it was like to be a lesbian when I was growing up, and
I agreed. Our conversations started me
thinking about my early years. It also
made me aware that many young people did not know the history of what it was
like to be a homosexual in the 1950s.
I decided to start with my birth and
proceed through to the present, including as much detail as possible. In December, my friend, Mary B, agreed to be
my writing coach. Previously everything
I had written used a technical, academic style in the passive voice. My coach has helped me a lot, but much of
what I have written is not in the story-telling style that I would like to
use. My focus has just been on getting as
much of the detail as possible written with the idea of being able to go back
and re-organize it later. Ellen and her
beta team of editors has been of great assistance.
I destroyed so much that would have been
useful before we moved, like grade cards from K-12, high school and college
yearbooks, and detailed files on every trip Diane and I took. I even purged my computer files. But I still had a list of the addresses of where
I lived since birth, transcripts of college coursework. I had memories, as faulty as they might
be. I asked my sister to review what I
said about our early family life. I did
have an Excel file that showed the year, destination, and often a brief daily
description of most of our trips. After
Diane got a digital camera, I stored the photographs on external disk
drives. From 1998 forward I had Quicken
brokerage account records, and from 2000 forward I had checking account records
for my personal and business accounts as well as Diane’s and our joint checking
account. Monthly credit card charges
were stored in Excel files starting in June 2009. I had Google calendar dates
from 2013 forward. I have used my
research skills to pull these parts together.
I am not hesitant to interview friends and acquaintances about
events. All but one of my previous
partners has died. I wish I could ask
Diane questions. I think living with
someone who has lost her memory has given me added incentive to write as much
detail as I can while I am still able.
Meanwhile, I have become involved with other
residents in many ways. Almost
immediately, I realized that there was no recycling. Why and what could I do about it? I called the city, discovered an inexpensive
way to begin and received approval from the executive director of our facility
to start a recycling program. One of the
managers, Lisa B, worked with me. She
found an unused storage closet where residents could bring newspapers and
containers. Maintenance agreed to empty
the containers into the outside recycling bins, and we were in business. Lisa also placed smaller blue recycling bins
at strategic places. I take my recycling
and safety knife to the closet every other day, clean out inappropriate items and
break down boxes. I feel good about what we have
accomplished.
Monthly Residents and Town Hall Meetings
were not held during Covid, but restarted soon after we moved in. The purpose of the Residents Meeting is to
give us an opportunity to express concerns and make suggestions for
improvements. I quickly saw that the
meeting would benefit from some leadership.
I tried to get some of the other capable residents to help out, but they
all begged off. The group seemed happy to let me lead, so I
did. It was a new role for me as Diane
had always been the natural leader. I
assumed the mantle familiar to me of teacher with the residents being the
students. I asked questions in an effort
to get them talking, which wasn’t always easy.
A Town Hall Meeting is held the following
week, attended by both residents and all of the department managers. After one manager introduces me, I tell each
manager in turn what has been mentioned concerning her area and ask the
residents in attendance if they have more questions. The managers then respond. I make sure that problems are addressed and
solutions described. We also review
recycling practices and the service provided by the local library.
Over the months, there has been a decrease
in problem areas, but it seems like there are always complaints about the
medicine not being delivered on time or it taking too long for a response after
a pendant button is pushed. I asked the
Director of Nursing to explain exactly what residents should do about these
complaints. They are told to visit the
Director as soon as possible so the problem can quickly be addressed. Residents sometimes approach me at other
times in the month with questions or concerns as well, and I now feel like a
valuable member of my community.
Being a caregiver for someone who has
dementia always carries some level of stress.
Having two free afternoons a week has been good for me, but I still have
to check that they are scheduled and make the payments. I have to shop for groceries. Being a Sam’s Plus member means I can order
and have delivered with no shipping costs many of our staples, like toilet
paper, Depends, and many other items. I
only have to go to the grocery store about every other week and to Walmart for
small items every couple of months. I
still manage our finances, medications, doctor and dental appointments. But most of these tasks I handled before
Diane was diagnosed.
I think the extra level of stress comes
from not knowing when I will see the next significant decrease in Diane’s
mental ability. I was so disturbed about
her losing the ability to dress herself that I predicted she would need to be
in memory care by the end of the year.
But lately she has seemed so stable that I think I may be incorrect. Although I spend a lot of time at my desk, I
am still vigilant to Diane’s talk and behavior.
I need to go with her when she goes to the bathroom, but sometimes I am
so focused on a task or I am on the phone and find she has gone without letting
me know. It usually is not a problem,
and I should probably feel lucky that she does get up and go when she needs to.
Why do I still think there may be some extra stress? Over the past year, my neurologist says my tremor has gotten worse, so he increased the dosage of one of my Parkinson’s medications. My hands are growing clumsy. I don’t know if it is Parkinson’s, osteoarthritis, peripheral neuropathy, or some combination of these. I still have discomfort in my right eye that my ophthalmologist has not been able to diagnose. Or are all of these simply symptoms of aging and have nothing to do with Diane?
The Future
As Diane continues to decline, I think
about what will happen when I can no longer physically function as her
caregiver. Not only do I help her get
dressed in the morning and ready for bed at night, I help her shower weekly,
holding the shower head while she uses the washcloth, and I tell her what to
do. I will eventually have the home
health aide take over the showering. I
know Diane will not like the intimacy of having someone else help her with
showering and dressing. She still likes
it with me. I am not a natural caregiver
and sometimes lose my temper. Whenever I
apologize for bossing her around or raising my voice, she just melts my heart
by saying that it’s not a problem and how much she appreciates everything I do.
This story is not over. There will be more adventures ahead. I hope I will be able to care for Diane as
long as possible. The bond between us is
still present and holds me tight. I know
there may be some point in the future when her light goes out, and she no
longer recognizes or is aware of me.
When that happens, I am prepared to let her go on her own way. At that point in time, I don’t think I will
feel like I have to constantly be with her physical being. But, that like everything else in the recent
past, is subject to change. I just hope
we can both live out the rest of our lives in peace.