husband

REMEMBERING MY FATHER

Edwin Weeks with horse

My father Edwin Weeks

June 15, 2012 — My father was a big burley man born at the beginning of the last century. With good looks, little education, and a work ethic that wouldn’t quit he managed to attract lovely Irene, artistic Irene and scholarly Irene. Having one semester of college she continued learning nearly all of her life. Their story is another of Alzheimer’s and love and caregiving.  In spite of his dirt-farmer background with no other experience, the couple moved from eastern Utah to San Francisco where he found sporadic work during the Great Depression. The dollars were scarce, but they managed, barely keeping their small family housed and fed.

THE WAR YEARS

“Give it a try,” Irene advised her hard-working, but reluctant, husband as he read the ad for workers at Vallejo, California’s Mare Island Shipyard, “all they can say is no.” Continue reading

Originally posted 2012-06-16 06:18:22.

THE ALZHEIMER’S LETTER

junk mail

Responding to donations for one cause resulted in a whole slew of more requests.

 

 

June 8, 2012 — There are times when I look back on Ken’s diagnosis and wonder if he went into immediate denial or if he just didn’t understand the full ramifications of Alzheimer’s.

CROHN’S

I did write about Crohn’s a while back in “Okay, Give Me My Shot,” loosely defining it because it has been a major health issue with Ken for decades.  Among the indicators of the disease is pain. To eliminate the pain and the accompanying symptoms of Crohn’s required an extreme change in diet.  High protein, low residue: meat, potatoes and white bread.  “That’s all,” the doctor said. Continue reading

Originally posted 2012-06-09 04:50:06.

SUPER BOWL GRATITUDE DAY

football game

Though gratitude may not have to do with football, to this caregiver it makes Thanksgiving, the superbowl of gratitude.

I never think of November without conjuring up thoughts of Thanksgiving which I have come to refer to as the Super Bowl of gratitude. There are a few grouches out there who believe the holiday is all a bother. No doubt the naysayers are imagining some corporate CEO greedily scooping up profits from the turkey market. Even if that were true the holiday is and can be so much more.

Squeezed in between Halloween (which seems to be getting bigger and better every year) and Christmas, Thanksgiving looks to be the forgotten holiday. No one appears to give it much thought except school children with their Pilgrim collages and hand-traced-paper-plate birds, and supermarkets whose windows are adorned with cornucopias, autumn leaves and fan-tailed turkeys.

So I find that before the family gathers around the table on the 4th Thursday of this month I begin early to count my blessings. Actually, I do most every day when I offer my morning prayer of gratitude, but sometimes it takes a reminder to appreciate things we take for granted, and don’t always think of as blessings – only bills.

I’m the first one to grumble about the increases in our utility costs, especially with the tight economy and our very tight budget, but what if gas and electricity weren’t available. The other morning, just as my day was getting started, the electricity went off.  It’s happened before, many times, and it’s always such a surprise. My immediate reaction – always — is what’s wrong with the lights? Automatically, I flipped a few switches. No electricity. I knew that already. There is something about a power failure that announces exactly what it is when it happens: the power fails. Perhaps it’s the suddenness followed by a brief, yet eerie silence as everything stops that momentarily baffles our senses.

Outside, there was plenty of light, but neither of our bathrooms has a window. Question: What shall I do until the power returns? Answer: I’ll prepare breakfast. Wrong, the stove is electric as is the microwave. When Ben gets here we can get Ken started on his day. No we can’t. The bathrooms are dark. Check my email, vacuum the rugs, wash/dry some clothes, or mend some of Ken’s things waiting for me on the sewing machine. Can’t do any of those catch-up chores, there is no electricity. Instead I made my bed, and before Ben arrived the power was back on. I went about the day immediately dismissing my half hour of inconvenience. When in reality, utilities, even though we must pay for them are blessings taken so for granted.

The next day the wall furnace, in the family room, where Ken “lives” (eats, sleeps and sits) stopped working. “When troubleshooting a furnace,” someone had told me, buy a new thermostat.”  I did. “Who told you that?” asked the servicewoman from PG&E as she sat cross-legged in front of my ancient wall heater. I gave her a “duh” answer to which she replied, “The first thing you do is call PG&E.” More often than not their house call can get the heat up and running, or they can tell you what’s wrong but they can’t fix it as the problem is beyond their service parameters. And they do this as a free service. She even installed a new thermocouple to match my new thermostat. “Don’t get a new heater,” she advised, “It’s a valve, and you need to get a good heater/plumbing person.”

The PG&E service woman who came and the people in the office with whom I spoke about the problem were incredibly helpful. They all got a “5” on the follow-up phone survey and I am so grateful for their help.

“Mason can fix it,” said a sweet young friend, Tara, when I mentioned my problem. “I’ll have him call you when he gets home.”

So that’s where we are this week in life’s comedy of ups and downs, struggles and solutions, and I am grateful for the kindness, the advice, the help and the general goodness of people, and to Mason who put the heater back in A-1 condition. Grateful for my comfort-filled home; certainly an understatement. Today’s homes are filled with luxuries beyond measure. What a marvel our lives and conveniences would be to our long-ago ancestors: running water in the house – hot and cold – heat on a chilly day, sanitation, lights to take away the darkness, a stove to cook our meals and a big white box to keep our food cold and fresh.

Setting aside the wonders of our modern world I can’t forget so many wonderful people who will and do step forward to help. I could go on, but I won’t. I have to save some thoughts for Super Bowl Gratitude Turkey Day when I will share my appreciation and feelings of love with those I am passionately thankful for: my family.  Ken and I are truly blessed.

Originally posted 2011-11-12 04:01:01.

Shhhhh! My husband is asleep

old man sleepingin bed

Even while asleep this caregiver gets comfort from her husband with Alzheimers; sleeping in the house.

I sometimes feel a bit isolated when the caregivers leave, but not for long.  Ken is in bed and usually asleep as the evening stretches before me.  Yes, cabin bound, but I don’t feel I’m alone in the house.  I’m not.  My husband is sleeping in the next room.  I can sit with him and read or I can talk to him if he’s awake.  Awake or asleep he doesn’t make much sense, but that’s all right.  If something entertaining is on the tube, I can sit next to his bed and watch TV, holding his hand while he sleeps – or not.

Alzheimer’s makes life such a dichotomy: at times I state that he is gone and other times when we are alone he is with me.  At night, his very presence gives me a semblance of companionship – the same feelings I had years ago when his day had been long and hard, and sleep beckoned earlier for him than usual.  He was at home although he was asleep.  If someone called I would simply ask if it was important because Ken had a rough day and had gone to bed early. I suppose that’s the feeling I have now at night:  my husband is here, but he went to sleep early.

It’s with that feeling I go about my evening – even laughing at myself for the lack of logic in some of my actions.  Ken’s caregiver, Ben, is very good to me and very considerate.  Waste Management comes to our neighborhood on Wednesdays to collect the contents of our various waste containers so Ben puts the cans out on the street before he leaves each Tuesday evening.  He also makes sure the cans from the house have been emptied as well. However, there are times when a forgotten waste basket filled with paper needs to be added to the recycle can.  I think nothing of taking the trash out to the street before I go to bed – even at midnight.  I have no fear of leaving the door open and dumping my small amount of paper into the recycle bin for pick up the next day because my husband is in the house.  If I lived totally alone, even though I am comfortable in my neighborhood, I wouldn’t empty the basket until daylight.  How rational is that?  Am I safer because he is here?  In his condition, certainly not, but because my husband is here,  I feel safe.  I know my reasoning defies logic, but feeling safe and feeling that I’m not alone is not only a comfort, but a battle fought and won, and it’s a blessing to have someone with me in the house, even if that someone could do nothing if a bad guy jumped out from behind a bush.

Bob DeMarco in his Alzheimer’s Reading Room blog often talks about AD victims still being here, and physically DeMarco, of course, is right and in some cases an AD victim’s cognitive awareness is in and out.  In reading about his experiences with his mother, Dotty, I realize that where she is with her AD is not where Ken is with his AD. During his awake time when daylight fills the room he is seldom the Ken I have been married to for more than a half century.  And when I look into his hazel-green eyes and see no response or recognition, and I’m sure others will agree, that’s when I have that feeling he is not here – he is gone.  But other times, and during those long night hours, as lacking in logic as it is, he is here with me — but we mustn’t disturb him because my husband is sleeping. And his presence fills my home and my heart.

Originally posted 2011-11-05 03:25:19.

HALLOWEEN AND MY SUPER FUN DATE

Halloween pumpkins

Carved pumpkins a sure sign of Halloween

I have often said the bonus part of being married to Ken is that he was a fun date. Not only was he a fun date before marriage he continued to be a fun date after marriage, but then many of our friends remained okay dates after marriage until the tube took over, turning them into the well-known couch potato. The difference between Ken, who did watch his share of ball games, and our friends was that he continued to be a fun date up until AD became a third wheel in our lives.

Our early neighborhood was mostly made up of young couples with small children, and all but a few budgets were pinched tighter than a size eight foot in a six shoe. Consequently, nights out on the town, or even a movie, were few and far between. However, to keep our social appetites fed, kids in tow, we entertained one another at our various homes taking turns hosting: we bar-b-cued, planned picnics in the parks, or at the beach, and enjoyed Sunday summer band concerts by our city’s Municipal Band – all without spending any money. In addition, a couple of nights a month the neighbors got together for a game of penny-ante with no one going home richer than he came. It was for fun not fortune as all of the winnings went into a kitty until there were enough accumulated funds for everyone’s dinner, plus a tip, which happened every year or so.

And there were parties and celebrations according to the calendar, but perhaps none so outlandish and memorable than Halloween, with costumes required. The 31st, of course, was kids’ night so the adult party was usually held on Friday or Saturday night before Trick Or Treat, but not every year. For those less willing than Ken to dress up as someone-something else was much too much to ask of some husbands on even a yearly basis.

Prior to our just-across-the-street friends Fred and Phyllis adding a family room, all parties were held in the host’s garage. Once we found their new room to be a warm and cozy place without a draft their home became the gathering place during the colder fall and winter months.

So it was that Phil donned in black shorts, black shirt, a cowboy hat and toy six shooters hanging from her hips became a female Paladin (Have Gun Will Travel, a popular TV series at the time). Laughing, she opened the door to let in the party revelers. Fred put on two arm bands, a bow tie and took his place behind his bar as the in-house bartender, which was the costume for many of the men. Ken wasn’t much different that first year matching my Roaring 20s flapper dress with gangster-looking attire, including arm bands.

Other years, and good sport that he was, he agreed twice to wear the other half of Raggedy Anne: Andy with a sailor hat and sprouting red yarn hair. Our faces matched with cherry-circled cheeks, smiling mouths and exaggerated eyes. We wore it to Fred and Phil’s second party and a few years later our duo costumes appeared at other events. There were times when I couldn’t believe he was still such a fun guy and so willing to throw caution to the wind and be just plain silly.

Several years later we had occasion to attend a fund-raiser for a local community service organization. I made Ken a white sports coat out of a piece of left-over polyester knit from years gone by, painted a black mustache on his upper lip and handed him a baton. As Xavier Cugat, he matched my Carman Miranda outfit topped off with a turban headpiece filled with an assortment of fake fruit, including a cluster of purple plastic grapes. We were a hit with friends, but didn’t win the grand prize – not even runner up – which was all right. It was a good time because I had a special evening out with my fun-date husband. I sure miss him.

Even as Ken succumbed to Alzheimer’s, I continued to decorate for the holiday, and the second year of Ken’s illness he remembered about the little ones coming for Trick or Treat. Together we put out decorations making our house look spooky without being scary. Every morning, though, I would find the pumpkins, scarecrows and the friendly, smiling ghosts on the kitchen table. More of a morning person than I wanted to be, Ken busied himself getting the house in order while I slept. “Why did you bring in all of the decorations,” I asked him. “Halloween is over,” he replied. “Let’s put this stuff away.” Explaining that the holiday wouldn’t be over for two more weeks, I asked him if he wanted to help me put the things outside. “Of course I’ll help,” he said, ready and willing to have it all in place when the costumed children came for candy.

We went through the same routine every morning until November 1, when I agreed that we could put Halloween away for another year. It would have been easier for me to just give in the first time he brought the whole array into the kitchen. But I wanted our life to be as normal as possible even if it meant doing the same job over and over, and for several years it worked.

This year in front of our house there is a seven foot happy-faced ghost – possibly a distant cousin to Casper — hovering in the midst of our juniper bushes, surrounded by candy corn lights and spider webs. Ken no longer brings in the decorations during the early morning hours. Sleeping in a hospital bed with full rails his morning activity is limited, as is his walking ability.  He isn’t even aware that Halloween is fast approaching. Actually, I doubt he notices what’s outside, much less the passing of days, one being much the same as the last. Neither is he aware of the leaves turning gold and the hint of another year soon to pass. Alzheimer’s, like a thief in the night or a mysterious, ghostly intruder has stolen away my fun date, and the demon disease didn’t even ask, “Trick or Treat?”

Originally posted 2011-10-29 18:14:30.

THINGS THAT GO BUMP IN THE NIGHT

Haunted House

When an old house creaks, it may be haunted or not.

“Your house is spooky, Grandma.”  The statement did not come from one of our younger posterity but from our 23-year-old grandson Brian.  Several years ago, before Ken contracted Alzheimer’s we had asked Brian, recently returned after a four-year stint in the Marines, if he would stay in the house while we were on vacation; look after the dog, take in the mail, water and cut the grass and keep everything ship-shape until we returned.  We also agreed to pay him a tidy sum for his efforts.  He happily accepted.  When we arrived home we found that he had been more not here, than here.

“I just couldn’t stay in your house after the first night,” he explained, expounding on every creak and groan he heard or imagined. “I think it’s haunted!”  I turned to this brute of a man and asked, “How old are you, Brian?  How tall?  And how much do you weight?”  If he looked a bit chagrined, it didn’t change how he felt.  “You house is spooky,” he repeated “really spooky.”

He then proceeded to detail his night in our so-called chamber of horrors.  “This place has bumps in the night, stuff moving in the shed next to the house and in the wood pile and in the backyard,” he confided.

“Probably a cat,” I explained. “Or it could have been a rat – or a possum,” none of which eased his mind.

“The floor creaks,” he continued, “like someone is walking.  So do the walls and I can hear the roof in the family room going snap, crackle, pop, and I believe there is something living in the attic making a rasping sound.”

Reliving his night of terror seemed to add to his vivid and out-of-control imagination.  He had verbally tagged everything except the foundation and windows, but I couldn’t really remember any of the strange sounds except the time when we did have mice in the attic.  Explaining to this gentle giant that our house was an older home and no doubt had settling noises, I also acknowledged that after a hot day the flat roof on the family room addition contracted making it sound like the bowl of Rice Crispies he described.   That wasn’t enough.  Unconvinced, Brian insisted the house was haunted even though I pooh-poohed the whole idea.  He did, though, express regret for abandoning his house duty, but assured me that the dog had been cared for as were the yards and mail – all accomplished during the safety of daylight.

Perhaps the sounds were there and Ken and I had just grown used to them so we didn’t notice, but our conversation reminded me of another dark night and an unexpected noise from long ago when our children were young, the house was fairly new and there was no Emergency 911.

I believe both Ken and I were awakened at the exact same moment by the click of a door latch as it snapped into its slot, and then nothing.  That one sound had brought me into wide-eyed wakefulness.  Lying in our bed I could feel that he too had heard the noise and was no longer sleeping – hardly even breathing – yet I managed to murmur, “Did you hear that?”

“Someone just closed the kitchen door,” he whispered back.  “We have a burglar in the house.”

“Call the police,” I uttered.

Quietly, he reached over and picked up the phone setting it on the floor to muffle as much sound as possible.  Feeling the rotary wheel he placed his forefinger into the “O” and pulled it to near full circle until it stopped, and then he let it go. The clicking as the dial returned to its place almost matched the thumping of our hearts.  “Operator,” a woman answered.  “Someone is in our house.  Call the sheriff,” Ken said, barely audible.  Within seconds a man’s voice was heard, “Sheriff.”  Ken quietly explained our situation and gave him our address.   We were assured that a squad car was on its way even as we spoke.  Ken hung up the phone and we lay there staring at the shadowed ceiling.

On the clock possibly a minute and a half had lapsed since the kitchen latch had pulled us both from our slumber when suddenly I exclaimed, “The children?”  Leaping silently from my bed I rushed to the boy’s room.  From the light cascading through their window I could see that all was well.  Slipping down the hall with Ken close behind I opened the door where our girls slept.  One bed was empty.  “Julie is not here,” I declared.  Adrenalin pumping and as quiet as the proverbial mouse Ken cautiously opened the kitchen door and tiptoed into the darkness armed with a baseball bat which he had picked up from the boys’ room.  Bravely, he called, “Whose there?”

“Daddy?” a small voice returned.   “Julie?” Ken questioned, “Is that you Julie?” he repeated placing the whiffle-ball bat on the seat of an adjacent chair.

Snapping on the light we saw our frightened little girl, ghost-like in her nightgown, peeking around the darkened corner.  “I had to go to the bathroom,” she explained.  “Why didn’t you use this one?” Ken asked pointing to the one right across from the bedrooms.  “I didn’t want to wake you,” she continued, “so I used the one in the laundry room, and then I heard noises so I stayed in there.”

Tucked back into her bed with an extra kiss, we said goodnight to our sleepy child and returned to our bedroom.  Ken picked up the phone a second time and dialed the operator who connected us once again to the Sheriff’s department.  Apologizing and asking that the car racing to our house be canceled, Ken explained, “There is no intruder.  It was a child.”  “Whose child?” grumbled the officer.  “Ours,” said Ken sheepishly, “and she’s fine.”  With that I could visualize the sheriff smiling as he said to Ken, “Have a good night.”

As the fall of another year edges its way into earlier darkness causing the evenings to become longer and longer – especially after the caregivers leave –I find that it’s really a good time for me.  At the end of the day Ken is very tired.  Alzheimer’s seems to sap his energy so he is soon asleep and I have several hours of free, uninterrupted time.  I write, or catch up on bills, or do other busy work, or treat myself with a CD to watch.  Then it’s off to bed where I read until sleepiness blurs the print. I can lose myself in a good book.

The house is silent.  Every so often one of the cats will gallop down the hall before jumping up on the bed – a familiar thumping.  Turning the page I hear another sound.  Pausing to listen I ask myself about the bumping coming from the shed, a thud as a log tumbles onto the bricks from the woodpile.  “It’s probably a neighbor’s cat,” I say to me, “or a rat, or a possum.”  I listen to the relaxing of our half-century old house as it yawns and settles in for the night.  If Brian were here I would say, “No, Brian, the house isn’t haunted; like me, it’s just tired and our joints creak.”  But if I do see an apparition I will take the advice of psychic Silva Brown from one of her books, “Just tell the ghost to take the first door on the right and go home.”  Then I’ll add, “And on your way, please don’t let the latch click.  It might wake up Ken.”  That’s when I close my book, move the cat, turn off the lamp, snuggle under the covers and go to sleep.

Photo courtesy of  country-boy-shane http://www.flickr.com/photos/shanegorski/

Originally posted 2011-10-22 02:54:49.

TILL DEATH DO US PART — UNLESS YOU GET ALZHEIMER’S

wedding couple hands

Alzheimer's is just part of "in sickness & health" for this caregiver.

I recently watched a clip on the internet where Pat Robinson talked about advising a man to divorce his wife who was a victim of AD.  Mind you, this is not a criticism of the Reverend or the man’s desire to begin a new life.  We all do what we have to do.

“She’s gone,” the distraught husband had told Robinson.  “She’s gone — just gone.”  Affirming what he believed to be true, the husband was seeing another woman. Understandably, he yearns for companionship, happiness and everything that was once held so dear in making life worth living.  Advising that he remain financially responsible for his wife’s wellbeing, a divorce was recommended.  After all, the man had already left his marriage. With advice from clergy — not necessarily approval — I am certain the husband felt an enormous burden lifted from his shoulders.  Nevertheless, it isn’t my place to be anyone’s judge.

There was nothing said about his age or how long they had been married.  A good while ago we had friends who were a few years older than we – married for a long time.  Happily married with grown  children and numerous grandchildren, Jean and Boyd lived a good life.  Suddenly, Jean became very ill with cancer.  Together, they fought the brave fight, but lost.  Boyd was left alone and not even the devotion and company of his children was enough.   Loneliness is a torturous and demoralizing companion.

Eventually, he married again and for a while the newlyweds were happy.  The new wife, and I’ll call her Sadie, was a good woman who had been widowed, so it was natural for two lonely souls to reach out to one another.  However, the fates were not kind and within a few years, Boyd developed Alzheimer’s.  Coping as best she could, for as long as she could, Sadie finally returned Boyd to his children saying, “I’m gone,” and she divorced him.

I can’t say that I was surprised.  Dedication and long-term caring for a victim with AD is no easy task.  A few years of togetherness, even in a happy, but short, marriage, doesn’t form a good, solid foundation such as one fortified with 40 or 50 years of history which creates the required devotion and “long suffering” it takes to see the illness through to its ending.  I don’t blame Sadie for ducking out.

If all the stats were in, and this is only a generalization, I do believe that women are better at coping and as caregivers than their counterparts, and I’m not talking about Sadie.  Most men are not natural nurturers, whereas women appear to come equipped with budding broad, encompassing wings and caring hearts, bursting into full bloom with the birth of the first child, or some other life-changing phenomenon.  From there on in it just gets better.

And yet I’ve seen friends show by their actions that my observations may be biased, if not downright wrong.  After a year or so caring for his wife Elaine, Arch moved the two from their family home into a cozy apartment in a semi-care facility where they could be independent with help as needed.  He cared for her as she muddled along with mild AD in a most kind and loving way until he fell, broke some ribs and died of pneumonia.  It was then they separated, she going to the home of their son and his wife and finally to a full-care facility, and he to eternal rest.  Perhaps I can again return to the thought that we just do what we have to do, and it probably has nothing to do with gender, nor does it have anything to do with right or wrong choices, but it has everything to do with us as individuals and who we are.

I’m reminded of a sweet email that circulates across my screen periodically.  It tells of an old man waiting to have stitches removed from a minor cut on his hand, and continues something like this:

The nurse watched as he fidgeted and looked at his watch, and then asked if he had another appointment.  He explained that he spent each morning feeding his wife breakfast at the nursing home — something she could no longer do because of having Alzheimer’s.  “Does she know you?” the nurse asked.  “No,” he answered.  “Then it won’t matter if someone else feeds her breakfast just this one day,” she concluded.  “It will to me,” he replied.  No need to wait for the doctor. The nurse quickly removed the stitches and sent him on his way.  An added p.s. reminded us that we all need to learn how to dance in the rain.

“God won’t be angry with you,” said my son-in-law Tim.  “If you need to place Ken in a full-care facility, I’m sure He will understand.” Attempting to ease my worry following a horrendous automobile accident early in 2010 I knew he was guiding my way into options for my return home and decisions which would have to be made.  “It isn’t about God,” I replied.  “It’s about me.”

As it worked out I have wonderful caregivers to help with Ken and I’m glad he’s here at home.  I’m glad I can come and go without guilt, or do busy work and stop in my chores to pat his shoulder and say, “Hi, Hon.  How are you doing today?”  He may mumble something or he may not, but he’s here with me, and that’s what I want – what I have chosen.  I’m glad that I can check on him before I go to bed, tuck in the covers, kiss him on the forehead and tell him once again that I love him. “Through sickness and in health – till death us do part.”  Divorce?  For me – that’s not an option.

Originally posted 2011-10-08 04:07:56.

LOST AND NOT FOUND

man lost in woods
People with Alzheimers may wander away, never to be seen again.

A while back I wrote for the magazine section of our local newspaper’s  Sunday edition, aptly titled “Brightside.”  

The articles were to be just that: bright and happy stories, good-news stories about people; what they were doing, interesting hobbies or talents, about gardens – either beautifully filled with flowers or vegetables, do-it-yourself projects or whatever was out there to make someone smile.  The section was all about people found to be on the “Brightside” of life.

 

It was before conglomerates gobbled up all of the family-owned newspapers pulling them into vast impersonal syndications buying most of their stories from a news service.  It was a less-hurried time when people actually read the bulging paper tossed on their front porch.

One of the very interesting people who appeared in the section was a librarian whose career spanned most of her adult life.  It wasn’t until she was in her later years that she decided to become a writer.  Surrounded by books all day, every day she knew where the “holes” were on the shelves.  Time after time children came up to her desk and asked about bugs.  Search though she did, there were no books about bugs for children. Finding a “hole” she began to fill it.

Doing her own research through adult scientific material, she translated the intricate entomology facts into “kid” stuff.  Successfully, she wrote, while the publisher’s artist illustrated, a series of charming children’s books about bugs.  Someone tagged her The Bug Lady.

Our editor thought her a delightful prospect for a Brightside article.  We writers all wanted the assignment, but it went to someone other than me who happened to be one of her friends.  Several of us got to meet this self-made bug expert who did look like a story-book librarian.  Wrapped in a warm cardigan sweater, a plain skirt, sensible shoes and very thick glasses she made all who met her feel like a child gaining knowledge as she shared her story.  She mentioned that her books didn’t make her very much money, but it was something she loved doing, and better than money her reward came as she watched the wide-eyed children smile and marvel at the informative, colorful books she helped create.

When we met, The Bug Lady was near retirement and ready for the change it would bring to her life.  She and her husband lived locally in a modest home, and soon settled into the comforts of just being themselves without the pressures of going to work each day.  Brightside ran the article and we writers found other people with interesting stories to tell.

Several years later I read about her again in the newspaper.  This time it was sad and shocking.  The Bug Lady had contracted Alzheimer’s.  Understanding the disease as I do now, it must have been a rapid decline for her because she was still very physically active and when she walked, some of her friends stated, she walked very fast.  Somehow, she had left her home and disappeared.   My friend and I went to visit with her grief-stricken husband to see if there was any way we could help.  Teary-eyed he could only relate what he knew.  She was gone.  There was a short blurb about her disappearance on TV news and a few continuing articles in the paper, but there was never a hint to her whereabouts – missing without a trace.  What could possibly be worse than having Alzheimer’s?  Having AD and disappearing never to be seen again.

During the past seven-plus years I have been thankful that Ken didn’t wander, but just because wandering wasn’t part of his habits didn’t mean that he might not scurry off if given the opportunity – not so much an opportunity – but a reason.  One night, a few years ago he had both.  After dinner with our friend Jayne, he and I headed for our car.  It was very dark, but Jayne followed us out to say goodnight.  I opened the car door and climbed into the driver’s seat, and then reached across to unlock the other door so Ken could get in.  Jayne and I talked for a few moments and when I turned to see if Ken was settled in, I was stunned to see he wasn’t there.  Leaping out of the car I looked up and down the driveway.  He was gone.  Apparently, with my quick disappearance into the car in the surrounding darkness, he must have forgotten where he was and, I suppose, began looking for me.  Glancing around I could see him walking quickly down the sidewalk as if he had some place urgent to go.  Already a good 200 feet away he was headed in the direction of a main thoroughfare with bright lights and activity.   I ran after him calling his name.  Still, he didn’t stop.  Instead he seemed to pick up speed hurrying toward the intersection.  Reaching him I grabbed his sleeve commanding loudly, “Ken, stop!”  “What?” he questioned in return, looking at me in surprise.  “Come back and get into the car so we can go home,” I prompted.  He asked where the car was as I turned him around so we could walk in the right direction.  Grumbling and complaining he came with me as I ushered him into the passenger seat making sure the seat belt was buckled.  “Goodnight, Jayne,” I called.  She waved and went into the house.

The experience had been a bit disconcerting, but because I could see him I didn’t panic, and he had a distance to go before he came to the intersection so there was no immediate danger.  The incident, though, taught me a good lesson: make sure he gets into the car, especially realizing how quickly he could have vanished into the dark night.

When Ben came as his caregiver, security at our house became even better than it had been before, and while Ken’s strength is now at a point where I doubt he would get very far before having to sit down and rest we don’t take chances with the outside doors which are double locked with us holding all the keys.

What could be more terrifying or devastating, more heart-wrenching or guilt-ridden to a family than having their loved one who is stricken with any of the Dementia-related illnesses lost in a confusing, often cruel and sometimes evil world?  At times I have wondered if Ben wasn’t being too careful about the doors always being double-locked, but then I tell myself that double locks are a good thing remembering the old saying, “Better safe than sorry.”

Photo courtesy of  http://www.flickr.com/photos/mysza/

Originally posted 2011-07-31 03:41:15.

A NEEDLE IN THE EYE — AND COOPERATION

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

In the earlier stages of Ken’s Alzheimer’s we paid a visit to the eye doctor.  As we sat down Ken looked around the waiting room and casually said, “Funny, with my right eye I can see the wall and painting on one side and on the other side I see the door, but I can’t see anything in the middle.”  Good grief, I thought to myself, he doesn’t see the chair.   I was surprised to hear his “complaint,” and glad we were having his eyes checked, but I also thought it odd that he had never mentioned anything before about not seeing things in the middle.  It was if he had a hole in the center of one eye, which sounded like macular degeneration.Our eye doctor gave Ken’s eyes a thorough examination and seemed pleased to find his eyesight as good as it was, but sent us to another doctor who specialized in the treatment of macular degeneration.  “Yes,” said Dr. Specialist, “I do see that you are having some difficulty in the right eye.  If the degeneration isn’t too far advanced, we may be able to treat it.”

No matter what Ken’s temperament was when we left the house, his behavior was exceptional when we entered a doctor’s office.  He was like putty in their hands and at the very top in patience doing whatever the doctor asked of him.  I often wonder what would have happened if suddenly one of Ken’s other personalities emerged and socked the good doctor right in the mouth, but so far Ken was Ken with everyone in the medical field.  Dr. Specialist explained about the new treatment for degeneration and possibly Ken could be helped.  Continuing, the doctor said, “The treatment consists of shots directly into the eye…….”  I do believe the only thing I heard was “shot” and “eye.”   “A NEEDLE IN THE EYE?”  I am thinking is the man crazy? Ken’s AD plays mind-tag with his other personalities. Does the good doctor really believe all three will sit still and allow him to stick a needle in their eye?  With the steady hand of a knife thrower, intense concentration, and my husband not moving or blinking, the doctor completed the procedure followed by a bandage over the eye to be worn until the next morning.

In a nut shell, the follow-up examination proved that Ken’s degeneration was too advanced to continue further treatments.  How many times, because of his AD, would he have allowed such an assault to continue is unknown and incidental at this point?  However, the needle-in-the-eye experience brought to mind the importance of advance warning: being told exactly what was going to happen.  Imagine the disaster it would have created if the doctor had not told Ken, or any patient, what he planned on doing, but just said, “Hold very still, don’t move and don’t blink,” then went ahead and stuck a needle in his eye.

Clearly, we all like to know what’s coming next.  “I’m going to give you a few shots to numb the tooth,” says the dentist.  You don’t like it, but you prepare yourself because you know what’s going to happen, and your mind says it’s reasonable: hence – cooperation.

Youngsters like to know what’s coming as well. “See this dangling piece of flesh,” the doctor tells our 12-year-old who had shoved the heel of his hand through a closed window.  “I’m going to sew it back in place, but first I’ll give you a shot so you won’t feel a thing.” Mission accomplished with only a few jaw clenches.

Even for major surgery, someone tells you what’s about to happen.  The first step being,  “Count backwards from ten,” instructs the anesthesiologist, “and you’ll be asleep.”   “Ten, nine, eigh………….”  Cooperation and instant sleep is the reward for advance information.

“Okay Sweetie,” I can remember crooning to my 2-year-old.  “Mommy is going to put your socks on.  Now your shoes – hold still.  Okay, other foot.  Socks and shoes on – thank you.  What a good boy – or girl.”  Even when they were little they soon learned.  Not only did their vocabulary grow, but they began to understand about cooperation – until they tasted independence and learned to say, “Me do it,” but that’s another story.

I find myself thinking of our little ones very often as Ben and I – or Criz – work with Ken during the morning routine.  “Put your jeans on,” I hear myself purring, as the caregiver guides each foot into the pant leg.  “Socks on, very good – other foot (as if he were two) now your shoes – okay.  Good boy, stand up now.”  These are all simple words, simple statements, something for his mind to absorb, wrap around and to ponder (if the thought remains long enough) in his mixed up world.   “Are you ready for breakfast?” I ask.  “Of course,” he grumbles, “I haven’t had anything to eat all day.”

Another morning we begin with, “Today, we’re going to take a shower, Ken.”  “No thanks, I took one already.”  “Good, but we’re going to take another one because you really like showers.”  In addition to the words, it takes a little coaxing, a little direction, another reminder, “We’re going to take a shower,”  leading a bit, encouraging and pushing gently, still guiding and holding, into the stall where Ken sits on the waiting stool.  “Ahhhh,” he exclaims as Ben lets the warm water splash over him, “that feels so good.”  I’m tempted to say, “See.  I told you so,” but I don’t.   Instead I feel grateful for small successes.

Does giving instruction and preparatory information beforehand help and does it always work?  Sometimes, yes – sometimes – no.  There are times when I say, “Okay, we’re going to stand up.  One, two, three — stand uppppp.”  He stiffens like a rigid board and shouts, “No,” and then begins to jabber at the top of his voice, adding yelps and screams.  So we back off until everyone relaxes and calm prevails.  When he is quiet I get close to his ear (holding his head with my hand to avoid a head butt) and repeat what we are about to do in a calm, firm voice, “We’re going to stand up now and you can help because you have good, strong legs.  Okay, one, two, three – stand uppppp.”  Finally – cooperation — and up he comes with hardly any effort from me and Ben.  At times he will remark with a touch of sarcasm, “Why didn’t you just say so?”

Sometimes telling patients exactly what you are planning works, and sometimes it doesn’t.  With AD, there is no pat answer, but I believe the conversation helps and it’s worth a try.  Who knows exactly what goes on in the diseased mind?  I am certain that he finds some inner comfort in being told what we’re doing.  Perhaps it takes away some of the fear.  In any event, his caregivers and I will continue doing what we believe is best and what appears to bring about positive results.  Besides, when it does work it makes life more pleasant for all of us, and in the long run it is comparatively easy — nothing like it would be if we had to stick a needle in his eye.

Originally posted 2011-07-16 18:45:20.

TO COMPLAIN AND QUIT — OR NOT

If anything, I would say that Boy Scout Mark had an extraordinary spurt of character growth at the tender age of 12.  Not only had he learned to cope with some of life’s heavy loads through what had been fun and games for the older scouts, he would also receive insight into another of his character traits a few weeks after the big hike.  While being a pre-teen at 12 can be a stepping stone into growing up, age doesn’t really matter as long as those valuable lessons learned are incorporated into one’s life.

Mark had already learned that if you remove the excess rocks – things you don’t really need — from your pack – your life — the load is lighter, and he cheerfully applied what he had learned to the remainder of the 50-miler.  It wasn’t as if Scoutmaster Ken hadn’t been aware of the shenanigans pulled off by the older boys; what he had been impressed with was that Mark didn’t complain or tattle. He also noticed the camaraderie that developed among the multi-aged troop during the seven days in the mountains where they recognized that the competition was not among one another, but between all of them and the challenge of the wilderness.

Mark continued to write:  “We learned about trees, poison oak, and edible and non-edible plants along the trail.  We crossed a glacier, and ate food with a little dirt; we learned respect for nature, which was all around us, and we learned to respect each other, and of course, to always be prepared.  It was seven days filled with learning, but it was what happened after the trip that changed my life forever.”

Ken always liked to give each boy the recognition he deserved at the Courts of Honor which were conducted for not only the young men, but for friends and families.  The Court was always well attended, and after the 50-miler the room soon filled with eager scouts and proud parents.  One by one the honor and merit badges were awarded, including a special 50-miler remembrance in the shape of a hiking boot.  “But I had not received my award,” continued Mark, realizing that all of the awards had been handed out.  “Then my Scoutmaster called me to the front as he had all the other boys. ‘I want you to know,’ Scoutmaster Romick stated, ‘that in all my years of scouting I have never seen a new scout like Mark.  He never complained, nor did he give up, not once did he quit on the entire trip.   He is not a quitter nor is he a complainer.  I am amazed and impressed.’  He then handed me my award and patted me on the back.”  Applause filled the room.  Basking in his moment of glory Mark later declared, “I believe I grew 12 feet tall that evening.

“That statement of 30 seconds, and the following accolades, changed my character and my life forever.  An adult had recognized a positive trait in me, told me about it and I believed it!”

For Mark it was a year of epiphany, discovering a part of his self, part of who he was which provided a guideline to the man he wanted to become.  With that inner knowledge he established a creed of determination by which he lived, and he has continued to do so all of his life.  Now, a grown man with a family of his own, Mark still recalls that evening with Ken, and wrote, “Even now as I think of my Scoutmaster I thank God for that man who showed me the way.” 

When I read Mark’s words I am in awe of my husband who was a very likable, but ordinary man, yet he was able to reach through that invisible armor of youth, see the boy’s potential and impact him with self-motivation and power.  I am humbled at Mark’s accolades for Ken. But even more I am inspired by Mark’s every-day use of his own established creed, which I’m striving to make my own.

As the “boss” caregiver for Ken with his Alzheimer’s there are times when I would like to quit and times when I am tempted to complain.  Actually, I know that neither is an option.  I’m not going to quit, and I have found it doesn’t do much good to complain; besides few want to listen.  Of course, we are allowed to vent and to share our sorrows and woes with friends who have fought the battle, and with my wonderful internet friends who read my blog and share their stories about their ups and downs, their joys and sorrows while living with AD.  They provide (and I hope I do as well) the soft shoulder to cry on, and with them I can vent – knowing that venting is good.  Even the best of machines needs a vent.   But I’ll strive not to complain or whine about those things which cannot be changed, and I’ll remember the wisdom of a 12-year-old boy who grew to be 12 feet tall in 30 seconds because of Ken.

Originally posted 2011-07-10 18:52:36.

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