1970 - 2010
I first met Lenora Sweet
in 1970, when I was dating her son Mike. In 1972, Mike became my husband and Lenora
became my mother-in-law. Lenora could talk.
And talk. And talk. She told you about her life and asked you questions about
yours.
After her five kids were
grown and on their own, she became a part-time employee of the Milwaukee
Recreation Department, running tours and planning events for senior citizens.
When she retired after more than a quarter-century of service, she was honored
with a certificate from Milwaukee’s mayor declaring it “Lenora Sweet Day.”
After retirement, she
continued the daily walking that she had started with her husband, Jerry, who died
in 1996 after 48 years of marriage. After his death, she was seldom home. She
attended workshops on retirement and anything else that interested her. When
she was home, she did word-search puzzles and kept the TV on for background
noise. Proud of her math skills, she kept her checkbook balanced to the penny.
She stayed in touch with some old friends. A few of them moved into senior
apartment complexes. Lenora toured those facilities, but she never wanted to
leave the home where she had lived since the 1950s.
After she turned 80 in 2006, the family watched warily as Lenora grew more and more forgetful.
After she turned 80 in 2006, the family watched warily as Lenora grew more and more forgetful.
2011
By
2011, her forgetfulness had become more than something one might chuckle about.
We were extremely concerned about her safety and, because she still drove her
car, the safety of others.
Eventually she grew so
confused about the controls on the TV that she could no longer make it work. My
son, Brian, went to her house and labeled the TV with a bunch of arrows
pointing to the ON button. Lenora had also grown confused about the controls in
her car. Mike changed the battery in her car (again) because it had burned out
after she left her lights on (again). Once a police officer stopped her as she
drove; she explained to him that she’d been driving so slowly because she was
lost. The cop directed her home. She had trouble adding and subtracting and
could no longer keep her checkbook. She only ate well when she was with others,
which was rarely. She shrank down to about 85 lbs.
In August 2011, Lenora
turned 85. That month, Mike took her to a family reunion in Aberdeen, South Dakota and it was a lovely trip down Memory Lane for her. She kept asking Mike, "Do you think we'll come back here again?" as if she knew something.
Although she did not want to talk about it, the family acknowledged what her doctor had diagnosed: Lenora, like her mother before her, had Alzheimer’s disease, that thief of mind and dignity. We realized that she should no longer drive. She should no longer live alone.
Although she did not want to talk about it, the family acknowledged what her doctor had diagnosed: Lenora, like her mother before her, had Alzheimer’s disease, that thief of mind and dignity. We realized that she should no longer drive. She should no longer live alone.
She wanted to keep
driving. She wanted to stay in her home.
Any decision was
forestalled in October of 2011, when Lenora’s sister Mary Jane in Illinois took
Lenora into her home for three months. Lenora spent hours each day with Mary
Jane and with MJ’s husband, Pete – walking, talking, watching sports on TV. She
ate hearty and gained weight.
Lenora with her daughter Marilyn and granddaughters
Tessa and Sarah, at Mary Jane's, Christmas 2011
Lenora with Tessa, opening a Christmas gift, at Mary
Jane's, 2011
While she lived in
Marilyn’s home, Lenora mostly sat in a chair and stared. Occasionally she’d
rise and search for her red coat; she was obsessed with that coat. Every night
she walked the bedroom hallway, lost and insomniac. Marilyn was fighting cancer
and needed every bit of sleep she could get. Marilyn’s seven-year-old daughter,
Tessa, coaxed Lenora into resting by pulling her into her own bedroom.
Finally, we moved Lenora
into a dementia care facility called Harbour House, about five minutes from
Marilyn’s home in Franklin, Wisconsin.
February 2012
The staff asked us to stay
away from Harbour House while Lenora adapted. We did keep away until she became
so agitated and aggressive that the staff called and requested a visit.
Eventually, with medication, she calmed down.
March 2012
Marilyn assumed the main
care of her mother, in concert with Harbour House. This included making sure
Lenora had clothing that fit her, toiletries, toilet paper, and so on. Marilyn
often visited with her children and husband, Tim. Sometimes she brought her
mother for outings to their home.
Lenora with Tessa in Marilyn and Tim's backyard, 2012
My involvement was purely
social. I began what would become a series of visits – sometimes alone, more
often with my grandsons Liam (age one) and Oliver (age seven). A few times I
also brought my “adopted” grand-daughters Alaina (age three) and Bella (age six).
During these visits,
Lenora’s eyes sparkled. She smiled. We walked together into the courtyard and
she talked about the birds. She had never expressed an interest in birds
before. The kids ran around the courtyard and Lenora said “They’re darling,”
with warmth in her voice. We returned inside the home and sat in front of the
aquarium. She talked about the fish with amazement. Sometimes we joined the
other residents and listened to a visiting musician perform. All the residents
beamed at the kids. Some grabbed them for hugs. The kids gamely obliged. Oliver
answered the same questions over and over and seemed to understand that the
residents forgot his answers immediately.
Others in the family paid
visits. Lenora was cheerful. During one of my visits, she showed me how she
stretched for the group exercise sessions: she sat on a chair and pulled her
knee up to her chin. She was truly limber, and proud of it. She walked with
ease while many residents used walkers or wheelchairs. She said she didn’t belong there because she
didn’t need a walker or wheelchair.
She never said our names.
I don’t think she remembered them, but she was good at “faking it.” At least it
was obvious that she knew that we were her
people by how she brightened when we walked in. That felt good. Even the children
seemed to look forward to visiting.
Often after I had spent
time there with the kids, Marilyn would drop by soon afterward and Lenora would
mention “the little boy” running around. That was Liam – she remembered him but
couldn’t hold his name in her mind.
Marilyn worked with Lenora
creating “ensembles” so that her mother could grab a whole outfit from the
closet and wouldn’t have to struggle to figure out which top matched which pair
of pants.
Lenora cooperated wholeheartedly
with speech therapy and occupational therapy. She seemed to enjoy it – working
on balance and strength, working on ways to remember names of family and of
staff. She said the Rosary with other residents. She joined them on group
outings.
May 2012
Lenora told Mike that she
really liked it at Harbour House, but she complained “Everyone here is old” and
“I don’t have anything to do here.” I didn’t realize it then, but now I believe
that this attitude was the beginning of Lenora’s gradual slide from happiness
to misery.
Once in a while she
addressed Mike or Marilyn by name when they visited. She sometimes pulled out a
scrapbook from her long-ago visit to Romania; she seemed happy looking at the
pictures with them.
June 2012
We kept a log of our visits.
On June 29, Lenora wrote several paragraphs in the log, most of which are
illegible. All I can make out is “--- enjoy having fun --- at this Harbour
Place! You can listen at the birds and ----. Good luck Mom. You help the ---
ones when you call Jerry is really a ---. It’s hard at times but I am driven.”
For months, Lenora and the
staff struggled with keeping track of her hearing aid. Marilyn came and
searched for it, finding it in a drawer or a pocket.
Another log entry from
Lenora in her squiggly writing that I can’t quite make out: “Lenora is Happy to
Be at --- House today to watch the dogs and be able to drive. I also came up
with a new friend in this area. He could dance basic swell musical and some
people --- be ---. I like to drive a car and get thanks for it --- cuss great
from there and we all thought so I think --- came to play with us.”
August 2012
Lenora gained so much
weight that Marilyn brought larger underwear, pants and pajamas so they would
be easier for her mother to put on.
Mike and I took Lenora to
the Sweet family reunion. She recognized many relatives and called them by
name. It was not so easy to carry on a conversation. I think the relatives were
taken aback. We all remember the former very chatty Lenora.
Soon after the reunion,
Mike visited Lenora at Harbour House. She remembered a lot of people being at a
picnic, but couldn’t recall names. She seemed alert but was having more trouble
expressing herself.
This month was the start
of many months of frustrating visits. It seemed that no matter when we came by,
Lenora was in a deep, dark sleep, even if she’d been eating dinner moments
before. We couldn’t rouse her and didn’t feel right bothering her. We suspected
that her horizontal lifestyle was related to the psychotropic drugs.
She became obsessed with
rearranging her clothing, stripping her bedclothes, or moving the knick-knacks
on her dresser.
Marilyn took Lenora out for her 86th birthday August 20. Three days later Mike visited and Lenora had no recollection of that celebration.
The staff at Harbour House
finally locked Lenora’s closet so she’d stop pulling her clothing off the
hangers. They locked her room door so she wouldn’t sleep all day and be up all
night.
September 2012
I brought my grand-boys to
visit. Lenora acted angry and irritated. She didn’t want them to touch the
Minnie Mouse. She showed no sign that she recognized me or them. She clearly
wanted us gone. We left.
October 2012
Lenora pestered anyone who
visited: “Take me home. They don’t want me here. I’m afraid. They’ll laugh at
me. It’s hard. It’s time to go. I can’t go down that hallway because I have no
money.” And on and on.
Our visitor log kept
disappearing because Lenora repeatedly carried it out of her room and walked
around with it.
November 2012
Lenora has a beautiful
mane of white hair – a beacon. The hairdresser has always curled it each week
in the Harbour House beauty salon. For the first time this week, the
hairdresser finished her styling in Lenora’s own room rather than in the salon…because
Lenora was so confused.
For the first time in a
long time, Lenora smiled at Oliver and me when we visited. Then she asked me to
take her home with me. She fussed with things on her dresser.
We had the first visit to
the emergency room this month, after she was found on the floor and the staff
was afraid she had fallen and hurt herself.
December 2012
When I visited, she seemed
obsessed with socks. She rolled them out and wore them on her hands.
January 2013
Marilyn visited and got a
smile from Lenora…very unusual. Usually any visitor finds Lenora deeply
sleeping.
February 2013
Marilyn visited; Lenora
was walking for a change, and said, “You’re my daughter.” Marilyn was thrilled.
She talked to her mother, but Lenora just stared at Marilyn and, after a short
walk, went to lie down again as usual.
Mike and I visited and
Lenora seemed angry. She talked about being cheated out of something. She did
not recognize us as “her people.”
March 2013
This month, Lenora had to
be stopped from grabbing food off other residents’ plates. Once Marilyn visited
and had to prevent her mother from grabbing food off dirty plates in the
kitchen. We suspected that the medication had something to do with this. Often
Lenora complained that she hadn’t eaten, right after she finished a meal.
Her walk became a shuffle.
Lenora was now 86. During
the past twelve months, her decline was gradual but steady. She had become
nonverbal or incoherent. She had a few visits to the emergency room (because of
falling or dehydration). In the hospital, she was not given the psychotropic
drugs she had received at Harbour House. The doctor thought that she had been
over-medicated, something we suspected for a long time.
She became incontinent and
the staff put her in adult diapers.
Mike and Marilyn became a
team, caring for their mother and going to the hospital with her. Because of
her series of emergency room visits, the staff recommended on- site hospice care,
which Mike and Marilyn agreed to. It meant she got a hospital bed and visits
from people who specialize in hospice care.
The staff at Harbour House
tried to persuade Lenora to learn to use a walker, but she would have none of
it. They explained to us that by the time a person needs a walker, it is too
late to learn; you must learn beforehand. But Lenora knew she could walk fine and couldn't comprehend the need to learn a new skill for the future.
Mike’s sister Marilyn had
been fighting lung cancer since 2008. The cancer had spread to her brain, and
now she was undergoing chemotherapy and radiation. She no longer had the
strength to visit her mother as often as before.
I continued visiting, but
less often, and no longer with the children. I decided to stop bringing them
because I was afraid she’d say something mean to them and they wouldn’t
understand.
Lenora had completely lost
her former cheerful countenance. No longer did her eyes sparkle. Smiles were
few. She seldom spoke. She continually complained that there was nothing to do
at Harbour House. Mike pointed out to her that the place had scheduled
activities every hour. I showed her the schedule of activities posted on the
wall. No use.
She had lost interest in
the visiting performers, the courtyard and the birds, and the aquarium. She
slept. And slept. And slept.
June 2013
The aide told me Lenora
had once again been locked out of her room because she had been going in there
and taking off her Depends.
It became common for her
to swear at us when we visited, and tell us to go away.
August 2013
Her hair had grown long
because she “hadn’t been in the mood” to go to the beautician.
September 2013
At age 50, Marilyn lost
her battle with cancer. We did not tell Lenora.
Lenora was now 87. Her
sister Mary Jane and her brother Dennis drove up from Illinois for Marilyn’s
visitation and funeral. At a point during the visitation, they said they wanted
to see their sister. I offered to be their guide at Harbour House. Mary Jane’s
son David drove us there.
 |
| Dennis and Mary Jane walking Lenora to her room at Harbour House |
Finally Lenora grabbed one
hand from Dennis and one hand from Mary Jane. Without a word, she placed their
hands together, one on the other, then placed her own hand on top.
 |
| Dennis, Lenora, Mary Jane during the "hand ceremony" at Harbour House |
Dennis and Mary Jane had
broken through the fog. It was only a moment of lucidity, but it was beautiful.
I consider it a miracle.
November 2013
Mike noticed a sore on
Lenora’s left cheek. She kept picking at it.
December 2013
No more hospice care; it
looked as if Lenora would be around for some time.
With Marilyn gone, Mike
became the family member most involved with Lenora’s care, so we moved her to
an Alzheimer’s/dementia care facility called Clare Bridge ten minutes away from
our home in Menomonee Falls. We tried to get her into the Arboretum, a block
from us, but they wouldn’t accept her because she needs psychotropic drugs to
control her aggression; they prefer a no-drug approach.
We had great trepidation
on moving day. I drove and Mike sat in the back seat with his mother. All the
way from Harbour House to Clare Bridge, she loudly repeated “Menday menday
menday.” She babbled on about how her mother got cheated. “They wouldn’t give
her a dollar.” Then, “They wouldn’t give her a dime.” Then, “They wouldn’t give
her a penny.” Again, “Menday menday menday.”
We wondered if “menday” might
be a Romanian word.
After an initial period of
anger, she adjusted to Clare Bridge. The doc changed her meds and she seemed
less aggressive. She remained silent, with few smiles.
I imagined that we’d visit
every day, but we don’t make it quite that often. Sometimes Mike and I stop by
separately, sometimes together. We have become her team now. Often when I
visit, I “speak” to Marilyn. I clip Lenora’s nails or put on fingernail polish
and in my mind I say, “What do you think, Marilyn?” I arrange and re-arrange
the clothing in Lenora’s closet and dresser, like Marilyn used to do. Sadly, I
removed all the nice colorful cotton undies that Marilyn had bought for her
mother – Lenora wears only Depends now.
Lenora walked with a slow
shuffle, but she could still walk. She did laps through the hallways at Clare
Bridge. She didn’t talk to anyone or partake in activities. We got distressing
reports: she had fallen. Or she had lashed out to a staff person or resident –
hitting, punching, pushing, pulling hair, biting, kicking. The doc adjusted her
medicine, adjusted it again. Lenora’s mood improved but then her legs got
wobbly.
When we visited, she
rarely looked at us. Sometimes I painted her fingernails and got a smile. Once
in a while – maybe every few weeks – I got a smile for no reason. It felt like
winning a prize.
January 2014
She had to eat alone
because the other residents were afraid of her – they had seen her hit others
and pull hair.
February 2014
When I visited, Lenora greeted me with a smile and said things that made sense, like “The snow is high (meaning deep).” I felt elated.
Her meds (or something)
made her so shaky that she could hardly feed herself and drink juice. But she
started walking the halls more and more.
The growth on Lenora’s
left cheek had grown huge. Mike and I double-teamed her on a bitter cold day
and took her to the dermatologist’s office. Lenora was a compliant car-traveler
but we found the transitions awful: getting her in and out of the car was a two
or three-person job. We used a wheelchair to get her from Clare Bridge to the
car, and from the car to the doctor’s office, just to speed things up. Still,
the process took about forty minutes instead of twenty-five.
During transitions, she
seemed scared. Again, loudly: “Menday menday menday.” She bumped her head on
the top of the door frame and looked terrified, as if she had been attacked. She
hollered something incoherent. But in the doctor’s office, she became a lamb.
“Eighty-seven years of
conditioning,” I said to Mike, “She knows to behave in a doctor’s office.” The
doc shaved off the growth on Lenora’s face, and said they would send it to the
lab for analysis.
March 2014
The doctor said the biopsy
analysis pointed to skin cancer: a malignant spindle cell neoplasm. That meant
three more trips to a surgeon: one for consultation, one for surgery, and one
for follow-up and staple removal. Every trip became another exercise in
double-teaming, complicated by bitter weather, clunky wheelchair machinations,
and abject terror on Lenora’s part.
The day of the surgery, I
was expecting Lenora to be a lamb once again. It started out well. The doctor
said, “How are you?” and Lenora answered, “Same.”
I looked at Mike with mute
astonishment: a sensible rejoinder! A miracle!
That was the end of our
luck, though. When the doctor gave Lenora several injections to numb her cheek,
Lenora swore at her. The doc rolled with it. She smiled at us and said, “If you
can’t take it, you shouldn’t be in this profession.”
We waited while the
numbing medicine took effect. I clipped Lenora’s nails (so she wouldn’t pick at
the wound later) and tried to wash her sticky hands. She freaked out and
started yelling. I sang “You are my sunshine.” More yelling. I stopped trying
so hard, and moved away.
Mike usually stays distant
because he thinks his mother is afraid of him. She usually swears at him.
Gamely he always explains, “I hope
she doesn’t know who I am.” On surgery day it seemed that I had joined her list
of rotten people. At one point she started to chase me. I actually backed up,
scared of being hit. I smiled and murmured something. She hollered, “Laugh!” I covered my smile with my hand,
and moved away again.
Fifteen minutes later, the
doctor and nurse took her down the hall, ready to do surgery in another room.
But in a blink, Lenora returned to us. “She wouldn’t sit still,” explained the
nurse. “Maybe if you walk her up and down the hall, she’ll calm down.”
Lenora seemed more tired
than before, less belligerent. I took her hand and we walked the hall. It was
flanked by empty examination rooms – a chance for her to be nosy (as she used
to be). Each time we passed a room, she looked inside. I felt happy seeing that
spark of the old “her.” Sometimes we walked (or shuffled) inside a room and
admired the artwork on the wall.
Then we walked past her
own examination room, where Mike sat in a chair attending to texts from work
(he’s a CPA and this was tax season). Every time we passed Mike, I said, “Who’s
that? It’s MIKE!” hoping she would comprehend.
We performed this ritual
three, maybe four times. Finally I led her into the room where Mike sat. Acting
on impulse, and still holding her hand, I leaned down and kissed Mike right on
the lips. I could see he was taken by surprise. I had just given him a
love-attack with no warning. I thought maybe my action would communicate
something to his mother.
Without a second of
hesitation, after I finished kissing Mike, Lenora, still holding my hand,
slowly, slowly leaned forward and downward.
This time, Mike could see
the love-attack coming. He inclined his head for the kiss he saw approaching,
and she gave it to him – right on the lips. He started crying, looked like he
didn’t know what to do, then rose.
He put his arms around his
mother. She put her arms around him. They stood together, silently, for a long
minute.
Like the “hand ceremony”
with her brother and sister last September, this love-attack was only a moment
of lucidity. It passed quickly – but I consider it another small miracle.
I never expect the
miracles: the sudden brief smile, the sensible rejoinder, the touch of love.
But oh do I appreciate them.
Lenora’s mother had
Alzheimer’s and died at age 94. Romanians are tough. Lenora could be riding the
ups and downs of this disease for another seven years or so. I pray to Jerry
and to Marilyn, Lenora’s husband and daughter in the next world, to call her.
My own mother died young, at age 48, in a car accident. I never got to take care of her in her old age because she never got old. It’s a sad privilege to care for Lenora. When I look at her, I see myself dressed in another skin. I pray there is someone to give me love if I ever become “unlovable.”
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