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Wednesday, April 2, 2014

Prelude to a Kiss

There was a time before, then there was Alzheimer’s Land, then there was the kiss….

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.


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.

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

 January 2012

 At the end of the Illinois visit, Marilyn (Lenora’s daughter) brought her back home to Wisconsin. At some point (we think right before the trip home), Lenora suffered what appeared to be a small stroke. Her face sagged on one side, and she became incoherent. She stayed with Marilyn for a week while Marilyn and my husband, Mike, grappled with the inevitable: they explored assisted care facilities.

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, Marilyn and Tessa, 2012

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
 Once at Harbour House, Mary Jane and Dennis got right in Lenora’s face, much closer than I have ever thought to do. Dennis murmured some Romanian words – familiar sounds from their old days growing up in South Dakota with their immigrant parents. Mary Jane kept saying “Hi!” with a huge smile and her eyebrows raised high…as you’d speak to an adored child. Over and over they got in her space like that, as if trying to break through the fog.

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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