moods

THE GIFT OF GAB — ALL THROUGH THE NIGHT

Ken was always a talker and so at ease with people.  When we met that was the first thing I liked about him.  Had he been Irish I would have guessed he kissed the Blarney Stone, but he wasn’t and so he didn’t  Ken was just blessed with the gift of gab. During our marriage I sometimes wondered if he really liked people or if he liked them because they listened?  I doubt he ever analyzed himself, and even if he did what would that prove?  Possibly that he liked to talk and he also liked people; making the question and answer come to a full circle.

For years he volunteered his spare time serving as cub master, scout master, Little League coach, manager, League president, Sunday school teacher, and the list goes on.  During that time Ken was the middle-aged man working with youth and loving every minute.  How gratifying it was to see the boys, eagerness filling their young faces asking, “Mr. Romick, did you me catch that ball?”  And to see 8-and-9-year-old Cub Scouts saluting and grinning from ear to ear as they not only received an award, but words of praise as well. Whether they were eight or 18 Ken always had some special compliment for “his” boys.

It was years later when someone called out from across the street or the mall, “Hey, Mr. Romick, how ya doing?” that we realized how quickly time had passed. Looking into the unfamiliar face of an obvious acquaintance, these typical middle-aged men with receding hairlines and mid-sections telling they were well fed and cared for, were Ken’s “boys.”  We were always amazed to acknowledge that the “boys” had grown up while we were growing older.   Meeting them once again, and watching as they grabbed Ken’s hand shaking it vigorously, I became aware of the great affection these men still had for my husband.  “It’s me, Mr. Romick, Steve from Little League,” or it could be Mark from scouts or Aaron from his old Sunday School class; all of them genuinely happy to once again meet this “mentor” from the past.

I doubt Ken ever thought of himself as anyone’s mentor.  It wasn’t just about what he did, but more who he was and what he said.  How it touches my heart even now when one of his former “boys” tells me how much Ken had impacted their life, how he had made them feel they were “somebody,” and they could do anything, meet life’s challenges and reach their best potential because Mr. Romick had faith in them and said he knew they could do it.  To many, his words were a gift.

Alzheimer’s eventually robs its victims of just about everything they ever had or held dear.  Communication with Alzheimer’s patients varies, and even conversation with the same patient differs from day to day and from night to night.

In his recent book, “Adventures Of An Incurable Optimist – Always Looking Up,” Michael J. Fox tells about his sleeping experience.   Apparently, with his Parkinson’s the tremors stop when the brain is at rest.  When I heard him speak of this during an interview, I thought about the differences with Ken when he had been asleep for a time.  

I have no doubt that the disease saps energy.  For several years, Ken went to bed well before I did (except when he is extremely agitated or disturbed).  Once he was settled I knew it was my turn to get settled.  No matter what his mood swing might have been just before bedtime, or whether he knew me or not, when I climbed into bed he turned to me, barely opening his eyes and lovingly asked, “Is that you dear?”  I assured him it was me and he followed up with something like, “I love you.  Goodnight.”  For those moments he was Ken, and in retrospect, I can’t help but wonder if his resting brain, like Michael’s resting brain, might permit the tangles to relax enough for a bit of normalcy to return allowing stored and familiar memories to emerge.   As a lay person, all I can do is observe and speculate.  For me, his asking questions during those small snippets of time, and accepting the appropriate answers were good, but brief, conversations.

However, with Alzheimer’s change is constant.  After several months, I found I was no longer able to “settle in.”  Even though he still asked, “Is that you dear?” falling back into slumber within a few minutes, I learned very quickly there was more to come.  Peace and tranquility prevailed until one night our comfortable routine developed a glitch.  Ken began talking in his sleep just about the time I was dozing off.  While it didn’t occur every night, it happened often enough to sabotage a good night’s sleep.

The interesting thing about him talking in his sleep was the articulation and sentence construction, which were clear and concise; actually better than some of what we were able to experience during the day.  I sat up in bed and listened.  At first I chuckled to myself, remembering how much he loved to talk.  So here he was deep in sleep having great conversations.  Ken would make a statement, pose a question, or wait for an answer. The timing was so on target I almost expected to hear another voice.  No doubt he was dreaming, and the person in his dream furnished the other half of the dialogue.  Because of the clarity I couldn’t help but think once again about the possibility of his resting brain allowing him to even laugh during his unlabored middle-of-the-night chats.

 Nevertheless, these outbursts of talking did nothing for my period of sleep and rest.   “Shhhh,” I would whisper.”  His talking continued.  “Be quiet,” I requested, my voice becoming louder.  “Buddy, stop talking,” I commanded in the voice of his mother.  “You stop talking,” he countered.  I tried the voice of a teacher calling him Ken, Bud, Buddy, Kenneth and Hey You, all to no avail.  He always had an answer, and the answer told me he was not going to stop talking.

As the filibuster continued, I picked up my pillow, closed the bedroom door and retired to the couch in the family room, which I didn’t mind.  The couch, a warm blanket and I had been friends for a long time dating back to hot flashes and sudden awakenings of years gone by.  The silence was golden as I adjusted the pillow, snuggled into my blanket, and smiled as I thought of the noisy convention in the bedroom.

Perhaps, I mused, Ken may have managed to play a trick on the devil disease by skirting around the pitfalls of daytime consciousness, taking refuge either in the subconscious or somewhere in his resting, relaxed brain.  I don’t have any answers, but wherever he might be during those happy hours of nocturnal conversations he’s in his best element.

Originally posted 2010-09-05 06:09:56.

YOU ARE MY SUNSHINE

“Hi.  This is Marvalee.”  “How good it is to hear from you,” I replied, “and what a nice surprise.  How long will you be here?”  Her voice always sounded bright and chipper with a touch of breathiness; the breathy part was that of a singer, and Marvalee was not only a singer, but a dancer as well, and had been most of her life. “I’m here from Maui visiting my mom,” she explained. “It’s her birthday you know.”  Yes, I knew, and I remembered the gala birthday parties Ken and I attended celebrating with Eva as her friends and family gathered to sing and dance away the previous years.  Marvaleee continued, “If you are free, I would love to come over and sing a few songs for Ken.” “That would be just lovely,” I answered.

The daughter of Ed and Eva, who were also entertainers – musicians —  and I use the past tense because they no longer perform.  Ed has long since passed on, a victim of Alzheimer’s, and following his inability to continue as their leader, members of the colorful band dispersed and retired.   Soon after Ed’s death, Mother Eva was stricken with the same dreaded disease, and has been with a caregiver for nearly ten years. 

The family, all from Hawaii, came to the Mainland to entertain in the best way they knew: songs and dancing Hawaiian style.   During the heyday of luaus, fire dances, flowing muumuus and island shirts, the band was very successful.  Natural musicians, most played by ear providing what Ken and I called the most danceable music in town.

Attending a luau whenever we could get tickets, Ken soon became known as a good sport.  Catching the eye of one of the gorgeous dancers, he was soon invited on stage to learn the hula or some other exotic dance.  My husband could be such a clown,and loved being in the limelight.  Wrapped in a grass skirt and wearing a lei he swayed back and forth as if he knew what he was doing.  He didn’t.  When the music stopped, Ken and the chosen others, bowed to a cheering round of applause, and returned to their tables – laughing.  He was, as always, a fun, if not an embarrassing, date.  And Marvalee, whose beauty and dancing rivaled no one, could always find him no matter where we were sitting.

 Soon after she called, the bell rang.  My door opened wide welcoming Marvalee and her friend, Mary.  The two burst into song, “Oh you beautiful doll……..”  My spirits were lifted even with my considerable hair loss and scar across my forehead.   Entering, we exchanged hugs and Alohas.  Approaching Ken for the same hug, he stiffened and drew back as I warned them not to get too close, he needed time to be comfortable with newcomers.  He was no longer a good sport, nor was he a fun date, and he didn’t remember Marvalee.

 Living most of her time away from the Mainland, she had no way of knowing how much Ken had regressed.  The fun-loving man she had remembered was gone.  Rather he sat down in a chair and glared at her, his lips drawn in a tight, straight line.  “At times Mama looks at me with those same tight lips,” Marvalee commented, Mary agreeing.  We compared notes.  We hadn’t seen Eva since January, but at the time she smiled at us and while she didn’t know exactly who we were, she knew we had been important in her life.  “Probably not any more,” said Marvalee with sadness’.  “Most of the time Mama’s eyes are vacant and she doesn’t remember me – nor any of the family.”

Later Marvalee opened her music case and brought out a polished ukulele.  Strumming a few cords, she adjusted the strings and began.  Lilting strains of Island music filled the room and she began to sing.  They were newer songs than what her father and mother had played, and unfamiliar to Ken.  He sat in his chair, his lips still drawn in a tight, straight line.  Transitioning one song into another, the two women harmonized away the afternoon.  Ken hardly moved a muscle.

Her fingers moved across the strings once again and suddenly familiar music filled the air followed by the memorable lyrics from long ago, “You are my sunshine, my only sunshine.  You make me happy……..”  It was if the very sun had broken through the clouds.  Ken’s face came alive and he looked over at me, a broad smile erupting on his mouth.  Her words continued, somehow finding a path through the fog of tangled and forgotten memory.  Lovingly he looked at me, just me, and then he winked and pursed his lips as if to blow a quick kiss.   We were two souls locked in a moment of warmth by yesteryear’s melody and words.  A tear or two of happiness spilled down my cheeks, and I felt gratitude for Marvalee’s thoughtfulness and music, and for my brief flash of joy.

Marvalee played a bit longer; songs from the past and Ken continued to smile, but not in the same way and not at me.  Music had reached him, and he must have experienced a spark of reality and realized that something pleasant had taken place. For a time he was social and polite. “Thank you,” he called as the two women left.  I walked them to the door and gave each another hug and another “Aloah, thank you.”  “It was my pleasure,” Marvalee whispered.  “I got to see Ken smile — just at you.”

Originally posted 2010-08-01 00:42:16.

Blessings In Disguise

Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

Originally posted 2010-04-28 03:39:46.

THE MOODY PERSONALITIES OF ALZHEIMERS

MOODY UPS AND DOWNS

Sad and happy theater masks

Many people with Alzheimer’s can be moody, adding to the difficulties of caregiving.

May 2, 2013 – Ken’s personality was never moody or mean. In fact it was the opposite: friendly and kind. Alzheimer’s, as it intrudes into the brain, does often have a negative effect on the victim’s actions.

SOME OF THE GOOD TIMES

Eating is a good example of the good things in his life. He enjoys every meal placed before him and eats with gusto. Everything is good to him, especially desert. He responds to the finale of a good meal with bright eyes and raised eyebrows right from the first bite. If the eyes could speak they would say, “Mmmmm, that’s good.”

Getting back to bed at night after a long day of routine is a good thing for my husband. His appearance shows a pleasant look on his face, which is relaxed and quiet. Within a few minutes he drifts off to sleep, and another day as his battle with Alzheimer’s is over for a few hours. Following a good night’s sleep, he’s ready for another day. Ken loves to go places, even to the doctors. although getting in and out of the car is difficult for all of us, taking a trip to see his doctor is not unpleasant. He is always cooperative with his doctor as he takes Ken’s blood pressure and checks his vitals. If Ken’s caregivers were ever as intrusive as his doctor, they would receive a push, punch or shove. Even when having his blood drawn, Ken is pleasant and cooperative.

Having his hair cut might not be something he looks forward to, but he doesn’t seem to mind. I still cut his hair rather than take him to a barber, and again he is very cooperative. Possibly, Like the doctor’s office or hospital surroundings, there must be something familiar and all right with the procedure. That’s good for David and me. It would be difficult to keep him tidy looking if he were thrashing about and fighting us, but he isn’t. He is also calm when he gets a shave.

LIFE IS NOT ALWAYS VIEWED THROUGH ROSE-COLORED GLASSES

Cleanup-time is not Ken’s favorite. As a very private person, he still likes his privacy, but David and Crizaldo make every effort to not rile him. Sometimes, though, the cleaning job must be completed. There are days during the process when he does get upset. The other day, even though Ken’s hands are restrained, he managed to bring the double fist straight up and bloody David’s nose. David, however, knows such happenings go with the job. Ken’s Alzheimer’s no longer gives him coordinated speech to be threatening as he was last year. One of the personality parts remaining with Ken is his gratitude. While not remembering giving David a bloody nose, he seems to know that when the day is over, or after a meal, he has a feeling of appreciation, and will often say, “Thank you very much.” The remark is not addressed to anyone, in particular, just an expression of gratitude. Hearing him be a little bit of the person he made me happy, if only for a little while. What can family and others expect when dealing with their moody loved one? It seems to be another quirk of the disease where the caregivers need to adjust. Choosing to never take their moody AD behavior personally is a start for caregivers to get over these difficult character changes. Remembering that being moody is not necessarily a choice for the person with Alzheimer’s. Caregivers need to learn to take unreasonable behavior in stride, and for the patient it is normal.

Originally posted 2014-05-04 00:55:25.

THANKSGIVING MUSINGS

The day before the holiday I took a few minutes on Facebook to wish all of my friends a very Happy Thanksgiving.  Adding a short note of greeting I mentioned that even though we are all grateful for our blessings on a daily basis, Thanksgiving was a special day to review the year and once again be abundantly grateful.  Sounding redundant, I wrote that this day was the Super Bowl of gratitude.

Granddaughter Marisol quickly wrote back saying she was going to use that.  Continuing she told me about talking with someone who was basically a TG-Day Scrooge.  He all but grumbled, “Bah-Humbug,” about the holiday.  She was pleased with the idea of a Super Bowl of gratitude, and together we wondered about the naysayers of Thanksgiving?  We can’t call them Scrooge, nor can we add the “Bah-Humbug,” that’s already in use for Christmas  grouches.  We agreed that they would become just plain Old Turkeys — Tough Old Turkeys.   Later, thinking further ahead, but I’ll run it by Mari, instead of “Bah-Humbug,” how about using, “Bah-giblets.”  It flows nicely and a lot of Thanksgiving fans would like that one, especially grandson Sean who despises giblets.  He cooks them and then unceremoniously gives them to the dog.  She is overjoyed.

Our daughter Julie surprised me by coming to our house in the morning with wonderful vegetables to cook.  I thought her last years effort was over the top, but this year her contribution was fabulous: sliced and roasted brussel sprouts, roasted sweet potatoes, and green beans flavored with sage and butter.  (She believes roasting makes everything better.)   The day was half over when she finished with just enough time left to rush away picking up husband Tim for dinner with his parents.  “It’s all ready — just reheat and serve,” she instructed before leaving, and then she gave me a long, hard hug – half for me and half for Ken.  We’re never sure how receptive he is to hugs and didn’t want to change his good mood with an unwanted touch.  A wave and “Goodbye, Dad,” was sufficient.

Turkey day arrived at 12:01 p.m., November 25; an ordinary day, but being Thanksgiving it’s never ordinary especially when celebrating a holiday with a seriously ill family member.  Admittedly, it can be difficult.  However, the wonderful thing about our kids, their spouses and their kids is their acceptance of Ken, his Alzheimer’s and dealing with it in a matter-of-fact way.  Our grown progeny talk to Ken as if his mind understands their conversation, and that’s good – and appreciated – especially by me. It all feels so normal, and he feels involved even though his contribution to what is being said makes no sense to others.  They have learned to use some of my favorite key words and phrases such as: “Really?” “Is that right.”  “I didn’t know that.”  “I’m not sure,” in addition to a dozen other forms of reply to their father and/or grandfather who lives on another level of existence which doesn’t share our reality.

The afternoon and early evening was filled with good food, good company and lots of loving phone calls from those who couldn’t be with us.  Granddaughter Kristina, who lives here decided to spend the holiday with her mom and dad in Ogden.  She and significant other Chris drove the 800 miles, and then she called to wish us a happy holiday, as did other grandchildren and sons far away.

It was cold today.  I remember many years when we had the front door open because it was so warm, but not today.  After dinner Keith started a fire, we served pies and whipped cream and everyone helped themselves.  Most of the younger ones passed up the pies in favor of ice cream, and Ken felt tired preferring to go to bed rather than have even a dish of ice cream.  Tomorrow he can have his choice.

Have you ever noticed when company leaves it sounds like a swarm of bees?  They often leave in a mass – a tight group – making  buzzing sounds with everyone talking at once.  Adults are still finishing their conversation, saying goodbye, a frantic realization and quick search for a child’s missing shoe — it’s found — gathering coats, purses, dishes, hugs and kisses, waves from the porch, and then silence.

Pulling a rocking chair closer to the fire I put my feet up on the hearth and watch the flames dance in the grate.   A perfect time to reflect on the day, the year and count my blessings. It had been a good Thanksgiving and a good day for Ken. I am grateful.

We have come such a long way from those long-ago Thanksgiving days at the little farm of my parents in Sonoma County.  How the years have piled up bringing constant change to our lives; taking away our older dear ones and birthing new life for us to love and watch grow.  I sat there making a study of the dying embers feeling just a little melancholy, and then the phone rang; a bit late, but not for a holiday.  It was Debbie calling from Ogden.  “I just wanted to wish you and dad a Happy Thanksgiving,” she said.  The melancholy vanished with her hello.  I suppose I needed one more slice of family to complete the holiday.

We talked for a while comparing dinners and guests, our family here and most of her family there.  The debate over using the good dishes of our shared tradition or paper plates as some of the younger generation would prefer.  Makes life easier is their claim.  Deb and I laughed realizing that even the utensils we use for eating are part of someone’s tradition.  And as previously stated we must respect the traditions of others, especially the coming generations.  So we wonder as Thanksgiving 2010 fades into history, who, in the future, will be interested in or even want our good dinnerware and all of those bone china tea cups?

Originally posted 2010-11-28 08:15:53.

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