children

AFTER-CHRISTMAS CHRISTMAS SHOPPING

After Christmas Sales page

This Alzheimer's caregiver misses the companionship of shopping with her husband at after Christmas sales.

Ken and I used to do it all the time, and I do believe he enjoyed this kind of shopping more than I did.  Always one to appreciate a good buy, he couldn’t believe that everything left over from December 25, was marked 50 to 75 percent off.  “Hang around long enough and it might reach 90 percent off,” I would tell him.  Usually, though, at 90 percent what was left wasn’t worth taking home.

“Look at this,” he called out, attracting every customer within earshot, “it’s only $8.00.”  It was usually a toy he would have selected a few weeks prior for one of the many little ones in our family at twice or more the price. Of course we weren’t the only shoppers looking for future gifts.  No longer under the stress of the Jolly Old Elf’s arrival, we all gently sorted through the bins and shelves finding just the right gift for next year’s “someone.”

So amidst the austere surroundings, when stores deliberately strip their displays down to the nubs and advertise “White Sales” meaning sheets and other linens which are no longer necessarily white, we understand the barren look.  Colorless windows and displays in January usher in the coming of spring just around the corner when shoppers, hopefully flocking in great numbers, will be dazzled by the store’s new brightness and buy the latest in fashion.  However, as post-Holiday shoppers strolling through the bleakness of winter there is at least one counter, or section, that displays the merriment of Christmas just past.  That’s why we were there.  With our carts piled high we set out for the car pleased with our bargains; a small portion of next year’s gift list on the back seat.

Going to the mall alone a few days before the New Year, I did not intend to do what had been Ken’s and my pattern for so many years.  Alzheimer’s manages to remove just about all the pleasantries from life – even shopping for the small children.  I went because I needed a few things.  Items purchased, I strolled among the isles featuring “White Sales,” and stumbled upon the red and green of close-out Christmas.  I couldn’t resist just a quick look, but soon my cart was filled with toys, crafts and games for next year.  The bargain hunter within me is alive and well even if the trip isn’t the same without Ken.  Now it had become merely the practical thing to do.

Gone was the mischief I used to see in Ken’s eyes, glancing around as if he had pulled off a “fast” one at the store; the ultimate toy bargain, not fully grasping how happy the store was to have it all gone before inventory.

I miss the time he didn’t want to settle for just one gift for each child – his grown children included.  “Just a few more little things – like the stocking stuffers when our family was small,” he would coax as I marked my list complete a week or so before Christmas.  For a long while he thought gift buying was like after-Christmas shopping: all fun.  What he didn’t grasp was that serious shopping is often time-consuming and tedious.  “Okay,” I finally told him, “I’ll wrap if you buy.”

Dutifully and by himself, he began his search the week before one of those bygone Christmases only to find how difficult it was to find a bunch of “little things” times three or four equaling stocking stuffers for a couple of dozen adults and children.  “You win,” he confessed after a few days of searching for just the right extras.  I know how he felt accepting that our children are all grown with children of their own – even grandchildren  — and they don’t need any more stocking stuffers.  So he became content with our after-Christmas bargains where one gift for each person is just fine.

Our Holidays are different now.   Still able to be at home with me, spending most of his time content to be in our family room which has become his domain, shared with Alzheimer’s, me, the caregivers, and the cats Ken is as happy as he will ever be.  With Ben and Crizaldo to do the heavy care, I am still the main caregiver; the one in charge, but always allowing them to do their job in their own way.  In his dementia every so often he will ask, “Where’s the boss,” which no longer means much although the boss is me, but I am not who he wants.  Recognition is seldom there.  In all outward appearances he is the man I married – older – still Ken – but not.  I miss my husband, my friend, my fun date, and my after-Christmas-bargains shopping companion.

Originally posted 2012-01-07 05:01:34.

THANKSGIVING AND MOMENTS OF FEELING “NORMAL”

Turkey

Sometimes the familiar will help Alzheimer’s victims glimpse normal

Living with Alzheimer’s there are seldom days, or even periods of time, when life is “normal” – or I should say the way it was – or seeming to be the way it was.  Nevertheless I strive for “normal” as a goal – possibly that we could live our lives in the same manner as we did before AD even if for only a moment.  Certainty the day-to-day care and the fluctuations which occur to the mind and body of anyone with a severe terminal disease are to be expected. Yet a portion of a day can still appear almost like old times.  I suppose it all depends on many factors: influences from within the AD victim and outer influences, noise or silence, visitors or none, cooking aromas, weather, music, sports on TV, the voices of children – any of these may or may not set the stage for mood swings.  Optimistic that Ken would be in a good mood, I set his usual place at the Thanksgiving dinner table.

It’s always a gamble to eat with Ken.  At times he’s been known to reach over to my plate and help himself to something that appeals to him.  Something like those long-ago times when our toddlers were tied with a dish towel into a chair stacked with books when no highchair was available. It was comical to see the adults pulling food and plates out of reach as the small hand stretched at arm’s length to acquire what might satisfy his curiosity as well as his tummy.  So I wondered how Ken would react to a table filled with other people and food in abundance.

I have mentioned before how social Ken had always been, and he responded well yesterday as company arrived.  He seemed more aware, warning the children not to go out a certain door leading to the backyard (which was pretty much ignored) and shaking hands with the adults when a hand was offered.  He even managed a smile or two.  The real test, though, would be dinner, and I did have a back-up plan.  Hopefully I wouldn’t have to use it.

As all of the prepared food and turkey culminated into a feast, Crizaldo and our son Keith guided Ken into the dining room where his chair faced away from the table into the living room where everyone had gathered.  “When dinner is served and his food is in front of him, you two can pick up the chair and turn it around.  That way he won’t be distracted by an empty plate.”

Ken was happy to be part of the group as Keith welcome everyone asking Bob to say a prayer of thanksgiving and a blessing on the food.  As the room became silent I counted my own blessings: years of good living with this man I had married and his prudent financial preparation for our retirement and the possibility of needed care beyond what either of us might be able to do for the other, and for the caring men who provide that additional need.  I am grateful for not only the surrounding family, but for those of our family who had other obligations and those scattered throughout the country; grateful for Liz who, after nearly two years of world travel, had her two feet gripping the ground of New York City and was on her way home.  We are truly blessed.

Following the final “Amen,” Keith and Criz picked up Ken in his chair and planted it directly in front of a plate filled with food.  Without as much as a skip of a heartbeat he picked up his fork and began to eat.  Not the way he often does, barely chewing before another fork full goes into his mouth, but casually, chatting the way he always did before.  I suppose it might be said that old things bring back old ways, and gathered around the dinner table could have triggered a memory from the past. Tuning in every so often it was nice to hear he was engaging as best he could in somewhat of a conversation, and I was pleased.  Nearby the children ate at a smaller table where they were more interested in getting finished and back to playing than they were in Thanksgiving’s bounty.

Another year has passed since we all gathered to celebrate our blessings and offer our thanks to the Almighty.  So as evening approaches I sit quietly and glance around the table at my ever-growing family.  I see Ken at one end of the table and me at the other: matriarch and patriarch of this wonderful group of people, and it all appears incredibly normal — almost like a Norman Rockwell painting.  Today, I am grateful beyond expression and content in these happy, captured moments.

Originally posted 2011-11-26 08:00:45.

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.

HANDICAPPED MORPHED INTO SPECIAL NEEDS

wheelchair

If we live long enough we may all end up with special needs.

I noticed in Erma Bombecks’s column, which I referred to in my last blog, that she used the word handicapped in reference to children with special needs.  How easily “special needs” rolls off the tongue in today’s world.  It was one of those descriptions that came through evolution during the pre-politically correct era.  Words have made it through transition since words began, and often that’s a good thing, but the emphasis on being politically correct I find irritating, if not a paralysis of speech. I’m one for calling a spade a spade – for example: when clothes come back from camp they are covered with dirt – dirty, dirty, dirty!  They are not soiled, they are dirty – even filthy.  In other areas I strive always to be kind, keeping my words sweet in case I have to eat them, but I also believe in the 1st Amendment.  However, being p.c. is not the issue.

The word handicapped is a good word to replace when its reference is health.  Any story you may have heard about its origin beginning with beggars in London holding their cap in hand as they plead for a handout is not true – a myth – an urban legend.  Handicap has been a word used in sports dating back to Scotland and golf, and you hear it often in horse racing. Why, around 1913, someone decided to use it for children who were born less than perfect no one knows.  Handicapped was expanded to include adults and people with mental disorders around 1950. That’s another “why” question when the word was, and is, doing so well in sports.  Disabled became its replacement, and many thought less-abled was even better, and whether it’s p.c. or not, special needs seems to be the most descriptive – especially for children. I like disabled for adults rather than less abled.  The less part sounds so contrived and leaves questions hanging.

Ken and I have seven disabled great-nieces and great-nephews, all belonging to our niece, Carla, and her husband, Chris.  Following the birth of their first child, who barely made it through a very premature delivery, the doctors warned the couple that any future pregnancies would, no doubt result in more preemies.  Furthermore they were advised that this baby would have considerable cognitive loss, wouldn’t be able to see, possibly not walk, and then mentioned there may be more disabilities they didn’t even know about – if she lived at all.  Nothing mattered as the couple waited the endless weeks while the fragile life ebbed and flowed, and gradually took hold.  Strong in their faith they knew they could handle anything.  “Just let her live,” was their fervent prayer.

Amazing could be the word, but no doubt it was more faith, humility and God’s plan that brought the tiny girl into near normalcy with her whole life spread out like a blossom-covered meadow. Yes, Aurora was a miracle.  “However,” explained Carla “we now know God was preparing us for something else.  When we decided to adopt, rather than risking more early deliveries, because of the unknown factors surrounding Aurora’s birth, we had already come to terms and accepted the idea of a child with cognitive disorders, cp, seizures and the like.  When the case worker asked if we had ever thought about a child with one of these – we just cracked up. The truth is God knew our children before they were even formed, and He knew Chris and I would not be willing to step forward — too daunting.  So in his incredible wisdom, he used Aurora to prepare us.  We never knew what a blessing her birth would bestow on each of us.”   They wanted a big family so the couple began adopting children with special needs from around the world; their disabilities ranging from mild to severe – which is all in the eyes of the beholder.

As an extraordinary teacher Carla works in a school district with a wide range of students and lifestyles.  Many of the parents have more important interests  than their children – leaving their youngsters with special needs of a different kind:  some are neglected – spiritually, physically and emotionally.  Some suffer from various kinds of abuse and many are just hungry for love and a sense of belonging; all of which fits beautifully into Carla’s loving and giving nature.  Her experience—vast.

Both she and Chris have given their children the best of all gifts:  a loving family, which is number one.  Additionally, the two have never bothered making an issue of any disabilities their children possess.  “Special Needs” doesn’t necessarily mean special schooling or classes, but it could include two prosthetic legs, a hook for a hand and muscles that don’t always obey.  Yet, it’s taken by the family as almost incidental.

Their beautiful little brown-skinned girl with the dark hair and near-black eyes was found living on the streets of Puna, India and did need special classes to teach her limited mind.  She remains the beautiful brown-skinned girl with dark hair and near-black eyes.  Even experts in special education were limited in what they could teach this child from the streets.  She has, however, inched along in her progress to be the best she is able to be.  With no background and no family history, much of her remains a mystery.  Nevertheless, she has grown into a happy, functioning (for where she is) adult.

All of the children are grown and constantly buzz in and out of the Oregon family home. Their lives are very normal and they are either continuing in higher education or working at a job — or jobs.  These young adults have a different understanding of disabilities, expressed by their parents right from the “get-go,” “Our theory has been that some of us are disabled now, and the rest of us are just temporarily able.”

I think of the irony played on humanity by the fates and find this thought process very true.  I look at my husband, with his AD, and realize he is disabled: both mentally and because of his cognitive decline he is becoming physically disabled.  Ken’s parents were disabled in their old age as was my own mother.  My dad, with no mental disability still needed help physically.  We moved him from place to place in a wheel chair, and because of his worn-out knees, he relied on a walker to get him safely around the house.   I suppose that made him somewhat disabled.  Perhaps the absolute mark of disability is having a placard which allows parking in a “Disabled Parking Only” area, and even that isn’t necessarily accurate.

It would almost seem that in the cycle of life we begin by being totally dependent on others for our well-being, and at the end of life we again are dependent on others.  Following the death of both his parents, Ken was determined that their fate would not be his fate.  Consequently, he began to take extra care of his body, making sure of a goodly amount of exercise: running and gym workouts, and keeping himself in general good health.  Noticing Ken’s unusual strength and his still well-developed body, his caregiver Crizaldo has said, “Mr. Ken defies age.”  In that respect, Ken did achieve his goal.  Physically, he would still be a very able-bodied man if it were not for Alzheimer’s.

I do believe there is a message here.  Many aging adults, and I’m the first to say “but not all,” are disabled.  Disability does not always have to be part of growing old although it is the road often traveled.  For those striving to remain able bodied, we all know the best way to keep on moving is to keep on moving.  I sometimes wonder if Ken, when we are helping him out of bed and he becomes as rigid as a board (which is totally self-imposed) isn’t doing what comes so naturally for him: stretching — exercising.  In this case he’s doing isometrics, and he is making his caregiver and me his opposing force.  After a few pulls using us as resistance he relaxes, cooperates and gets up.  How’s that regimen for keeping in shape?

Originally posted 2011-10-01 03:14:53.

GOD’S ASSIGNMENTS

Assignments from God are there to help us grow.

I miss Erma Bombeck.

While sorting through files recently I found a scrap of newsprint which I had clipped from our local paper.  Turning it over my thoughts raced back nearly 20 years when her column “At Wit’s End” was a twice weekly must read.  For those who never had the chance to become acquainted with Erma’s charm and wit, she was known, and probably still is, as a great American humorist.  I’m not sure if that adequately describes her, but it’s a start.  No doubt she was a devoted wife and loving mother because her mainstay was poking fun at child rearing, homemaking and living in suburbia.  Much of what she wrote began with a good laugh and often ended with a few tears, or she could reverse all of it leaving the reader chuckling the whole day.  Or you could just be filled with the profound and clever wisdom of it all.

The column I had pulled and filed away was so very poignant.  I suppose that’s why I tore it out and kept it all of these years.  Erma loved to play God and she was very good at it.  Well, maybe not play God; she was more like a reporter standing next to an assistant angel watching them at work.  She wrote about humanity’s relationship with God fairly often, which made us think, ponder, smile and feel good.

Special motherhood was the subject matter of my yellowed copy as Erma visualized God hovering over the earth deliberating which mother would get which spirit child as God and an angel made notes in a giant ledger.  The day’s work also included assigning an exceptional patron saint selected because of his or her strengths.  “Give her Gerald,” God instructed the angel, after assigning twins — probably two adorable, rambunctious, high-spirited boys — “Gerald is used to profanity.”

Progressing nicely in their labors, God passed a name to the angel and said, “Send her a handicapped child.”  Puzzled, the angel asked, “Why this one God?  She’s so happy.”

Explaining, God said it wouldn’t be proper to give a handicapped child to a mother who didn’t know laughter.  “That would be cruel.”

Continuing, God listed the qualities this woman had:  Patience – but not so much that she would drown in despair feeling sorry for herself.  She won’t have time for a pity party.  “Once the shock and resentment wears off,” assured God, “she’ll be fine.”  Then he told the angel how He had noticed her feelings of independence and self-worth that He found rare, yet so necessary in a mother.  The special-needs child required a mother who could do for the child what was needed and still be her own person.

With caution the angel informed God that this independent woman didn’t even believe in Him.

God just smiled, assuring the angel that He would take care of that.  “She’s perfect, with just enough selfishness.”

Stunned, the angel asked, “Since when is selfishness a virtue?”

God nodded to the affirmative, explaining that she would have to separate herself from the child on occasion, or she would never survive.  Then He went on listing all of the blessings that would come with this child of need.  How the mother would never take for granted the growth of her child, how just hearing that first, “Mama” would be a miracle, and how generous these children are with their love.  “I know that she would teach the child of my creations, seeing and knowing them as she had never seen them before,” confiding in the angel that this child would be blind. The angel agreed, and God concluded, “She will never be alone, for I will be with her every minute of each day.”

Curious the angel asked about the patron saint.  “A mirror will suffice,” God smiled.

All of this, of course, gave me cause to wonder about His assigning caregivers to an ever-growing number of people with Alzheimer’s.  For sure, there are countless members of the human family with special needs even if that need doesn’t appear until later in life.  Previously, I have talked about my friend, Madalyn.  Light heartedly, we remind one another that we don’t remember signing up for this job.  And yet, the assignment was/is ours just as parents with children having special needs learn to accept and live with what’s given to them.

So what are some of the hoped-for character traits which God might have seen in us?  Wow!  I wonder if He remembered that most of us – whether caring for aging parents, other relatives or our spouse – aren’t young anymore.  We used most of what were the best parts of “Us” bringing up that batch of children He sent to us early on.  So, now we’re running on leftovers?  No matter though.  Let’s see what those leftovers might be and what worn-out qualities we’ll have to reorder.

  1.   Patience:  Not a lot left, but I’m slowly acquiring more.  I no longer plead, “Give me patience and I want it right now.
  2.   Strength and energy:  The tank is pretty near empty, but I’m surprised how much I can muster up when required.  However, I have been known to sneak away and take a few naps.
  3.   Wisdom:   I didn’t have all that much when I had our first baby, but I managed to gather some by the time they were grown.  Whether it was enough I’ll never know.  My mom used to say, “It’s a shame that age comes so quickly and wisdom so slow.”  But what I did learn applied to children and young adults.  Now I must begin all over again gathering applicable wisdom for an adult with special needs, and it’s different.  I can’t sit down and reason with Ken about his attitude and how it might have a negative effect on his future, and then remind him he should make every effort to change his thinking.  If he listened at all he would probably say something like, “YOU!  You don’t know anything!” Any new wisdom I might receive will have to be applied to me so I can become a better caregiver.
  4.  Sense of self and independence:  I believe I still have that.  Being my own person has always been a blessing.
  5.  Tears:  God didn’t list them in Erma’s column, but tears go along with empathy, sympathy and love.  Besides, living in a state of perpetual mourning tears are commonplace, and are necessary as part of venting.  I’m sure most women, including mothers of special-needs children have a goodly supply of tears.  Typed on the prescription bottle is, “Use tears as needed,” but they often spill out during unexpected splashes of joy, and random acts of kindness.
  6.  Selfishness:  Yes.  I have my share of selfishness too.  And God’s reasoning is so good.   It is prudent to have some kind of life away from our needy charges no matter what our age – without any guilt.  We do have to take care of “us,” or we can’t take care of them.  Just as the instructions on the plane tell us: “Place the oxygen mask on you first, then the child.”  “ME FIRST” is a must-have attitude.  That advice belongs to all mothers and caregivers alike, but never “Me first and only me.”
  7.  Vanity:  That wasn’t listed either.  I would say to the angel that in this case, like selfishness, it is a virtue, and one of dire importance.  Not a narcissistic kind of vanity; I’m referring to humble vanity.  (Now, isn’t that an oxymoron?)  Nevertheless, when we look our best, we feel and do our best – at least we do better while striving for best.  Motto of the day: comb hair, brush teeth, touch of makeup and put on a clean shirt.  Get dressed every day and no sloppin’ around the house in a bathrobe.
  8.  Laughter:  I believe a good hardy laugh shakes down the woes leaving room for joy and other good feelings.  I have always tried to be best friends with laughter.  If it has slipped away, renew the relationship. Find where it’s hiding and bring it into the living room so it becomes part of the family.
  9.  Acceptance:  It may take a while, but no one can fight “what is.”  This is where life has taken me, and many of you, and there is no escape for the dedicated.  Might as well sally forth into the tomorrows and make them as good as possible.  Besides, nobody knows how many tomorrows are left.
  10.  Call home often:  God was certain we could do the job, and whenever we need to talk, He’s there.  He said so in Erma’s column: that he would be there every minute of every day.  Not only because he loves us, but He so appreciates us for doing some of his work, and caregiving is God’s work — especially when it’s done with a glad heart.

Oh!  And by the way, I believe Patron Saint Gerald has been reassigned to me for those times when my patience tank is running on empty.

Originally posted 2011-09-24 19:18:26.

FAMILY GENETICS, OR DON’T WORRY BE HAPPY

DNA molecule

Only time can tell whether Alzheimer's is transmitted through the gene pool, in the mean time live life to its fullest.

My mother was one of ten children: six girls and four boys.  Mother, Irene, and one sister, Elaine, were victims of Alzheimer’s.  It would appear that two out of the four boys were also stricken,  all developing AD in their later years. Keeping with those same statistics, several of the siblings died at or before they reached 60, with one in her 40s. Whether some of them would have succumbed to Alzheimer’s is pure conjecture.  Yet, the four out of 10 is 40%.

In retrospect, I would say the Alzheimer’s gene came through our grandfather who died in his 50s as a victim of pernicious anemia.  Possibly, AD would have come to him later in his life had he lived, but that, of course, is another guess.  It did not come to our grandmother who died at 84. She could be stubborn, a bit cantankerous, and a little forgetful, but her quirks didn’t seem to fall under the guidelines of anything from the Dementia Umbrella.  In that same search of the past and from the stories and memories my mother told about her early childhood including remembrances of her mother, I do believe my grandmother was afflicted with attention deficit disorder, ADD.  So far, and not to my knowledge, ADD does not fall under the Dementia Umbrella.

My grandmother was proficient, though, in being able to run a somewhat organized farm life.  In addition she had her own system of birth control spacing her babies every two years (having at least one miscarriage following the birth of Irene leaving a four-year space between her and the first son).  My grandmother’s last child, a boy, was born just six months before my older sister, making him more like a cousin than an uncle.

Mama’s sister Elaine seemed to have been a little off center all during her adult life.  It wasn’t as if she lacked intelligence, it was just the fact that she seemed to be what my sisters and I called, “a little bit dingy.”  She and her husband were childless, and, perhaps, that may have influenced her life of self-importance and indulgences.  With no one to be concerned with except Elaine, her world appeared extremely limited to us.  She seemed to skate on the surface of life like the water skitters I remember buzzing over the top of stagnant pools as the creek dried up near our grandparent’s property.  Our aunt was limited in her scope, never venturing beyond where her focus was, paying no heed to anything above or below the surface of her tight, little world.  Signs for actual AD diagnosis began to appear in her 50s suggesting she was a victim of Early Onset Alzheimer’s, and possibly before.

Her husband Ray cared for her at home, with the help of my sister, Janet, for as long as he could manage. When he could no longer cope, they reluctantly found a good full-care facility where Ray hovered over his beloved wife spending every moment possible.  However, during his visits it wasn’t at all unusual for Elaine to dismiss him in favor of the familiarity of other residents which left her devoted husband shattered.  Eventually, even the familiarity of the familiar became illusive for Elaine and little by little she slipped into the nothingness of AD leaving only her shell which seemed to cling to life with the tenacity of a last leaf.  She outlived Ray by most of her 10-year confinement as Janet continued to supervise her care.

As more and more is learned about the diseases falling under the Dementia Umbrella, I see concern looming over the horizon when Ken’s and my adult children speak of the possibility of AD in their years ahead. The knowledge that both sides of their paternal grandparents have victims, and a few of Ken’s first cousins developed full-blown Alzheimer’s the future can appear daunting for the next generation.  There is fear: of course they have fear and the ever-present question, “Will I be a victim?”

As we continue our discussions I mention that the jury is still out on me and my two sisters.  I get the glance and then a possible eye roll.  “Mom!  You’re not going to get Alzheimer’s.  What do you mean the jury is still out?”  Then I remind them that my mother was in her mid-eighties when we saw the first signs.   I also remind them that there is no history whatsoever of AD existing in my father’s family and their longevity also extends into a near century.  “Hello.” I tell them in an effort of reassurance, “The genes which make up the life force in you – my children — include the strong genes of my father’s family as well as all of your other relatives.”  As our p.c. doctor mentioned when I first asked about AD and Ken the wise doctor said, “At conception, there are numbers beyond measure from which to draw the genes for a fetus.  I would say that Ken’s chances are possibly yes, and possibly no.”

The wise part from our doctor’s declaration wasn’t said in exact words, but I see it now.  He meant for me and Ken to live our life together to its fullest and deal with the problem if and when it arrives, which we did.  Even as the disease progressed we lived our lives to their fullest.   My wonder – and worry — about worry is, “Can worry cause more worry – and that worry become a problem – creating an illness through worry — thus triggering AD into a self-fulfilling prophesy?”  How much bombarding of our psyche with negative worries can a psyche endure without succumbing to that worry?  Again, a question without answers.

Statistics tell us that if we live long enough 50% of the population will have Alzheimer’s.  That’s one in every two people.  Presently, there aren’t many options:  testing is the most promising – if you can call it promising – and if you want to know the answer.  If you know, then early treatment is a good thing, and even that’s not without questions.  Perhaps we should all take a deep breath, relax in the moment — and in that moment – those moments – don’t worry, be happy.   Then burst into song with Doris Day as she belts out “Que Sera Sera,” or in other words, “What will be, will be.”

Photo courtesy of  http://www.flickr.com/photos/wheatfields/with/2074121298/

Originally posted 2011-09-17 20:03:10.

AND THEN THERE WERE NONE

I visited with my friend Eva this afternoon. I have mentioned Eva and her very talented musical family, originating from Hawaii, who

finances

Running out of money adds to the stress of aging and Alzheimer’s caregivers.

entertained many of us living here on the Mainland. Whenever we craved the swaying of palm trees, balmy beaches and the setting sun over the Pacific we asked them where they would be holding their next luau. Eva’s husband, Ed, and his band played the very best dancin’ music in town. Not only did they make an evening romantic in its artificial setting, the group provided authentic food, young and beautiful grass-skirted women doing a variety of Polynesian dances, and a traditional fire dance, accomplished by their oldest son as part of the grand finale. Eva taught her girls everything she knew, and when the entire group danced you would swear their hips were on springs. Everything you dreamed about being in the Islands was there during those wonderful evenings of long ago.

Eva now has Alzheimer’s, as did her husband. She is also 90 years old. It seemed that no sooner had he passed on that Eva began showing the same signs of confusion and forgetting. Yet, with the help of her youngest son Matthew, Eva, dressed in a fitted muumuu of her own design, a flower tucked behind an ear, continued to volunteer her musical talents, singing and strumming her ukulele at Senior facilities throughout the East Bay of San Francisco. Eventually, as the disease took hold, she sang her last song and her ukulele lay silent in its case.

She has been absolutely content living in her own home with Matthew, whose mental capacity had prevented him from reaching responsible adulthood. The rest of the family agreed they would be able to remain there by doing a “Reverse Mortgage.” When she was 82, the family helped her work out the details with the bank and a long-term professional caregiver, which included an iron-clad contract for her care until she was 90. The family was certain the 8-year contract would suffice, knowing that Eva was also plagued with diabetes.

Every year Eva’s children came from far and wide to help celebrate her birthday with a grand party, music supplied by friends, and tables filled with Island food. Hearing her friends sing and play the familiar music seemed to bring her confused mind back to what she loved most: music, singing, entertaining and her beloved family. Eva sang bits and pieces of songs she had known and the sounds floated through the air as many joined in to help her recapture the past. She even kicked off her shoes and danced a little. Unfortunately, we all knew that it would be forgotten the next day.

This summer Eva turned 90, and we helped her celebrate the end of an era with family and a few scattered very old friends. It also brought an end to the contract, her caregiver and her home. The house belonged to the bank. As the old book title states, “And Then There Were None.” In this case it was money. The estate was broke. The reversed mortgage had paid its last payment. So now what? When the elderly infirmed reach a point when there is no money left, and the family, scattered all over the U. S., is unable to furnish additional funds, or care for a loved one what happens?

I visited Eva today in her new home which her daughter had found several months ago, explaining the situation to the admissions director and arranging an entry date. I was pleased to see it roomy, comfortable and clean. I also appreciated the important part: the air smelled fresh. Apparently, when family funding runs out for an older patient, the state picks up the tab. It’s no longer like the 1800s when Charles Dickens wrote his sagas about people without the ability to pay being turned out to live on the streets – or were tossed into a debtor’s prison. I couldn’t imagine my frail, gray-haired friend who had given so much in time and talent to the community not to be cared for in an appropriate way. She also needs full nursing care as complications from diabetes made the amputation of one leg necessary.

Arriving at the location I rambled down two long halls before I peeked into Room 36B. Finding the bed empty I couldn’t imagine where she might be. In my return journey down the hall in search of Eva I spied her sitting in a wheel chair with a few other people – also in wheel chairs. They didn’t seem to be chatting, but at least they were company for one another. She smiled up at me, but then she smiled at everyone. I gave her a hug, asking the duty nurse if I could take her for a ride, she nodded and I wheeled Eva into a nearby room where I pulled up a chair so we could talk. It was mostly idle conversation where she could fill in the blanks. Like Ken, deep-thought communication was not likely. By filling in the blanks, she gave no wrong answers. I quietly sang some of the church songs she had taught the children many years ago. Eva managed to join me with some of the words. Later, she asked, “Did your husband come with you?” I doubt she remembered who I was much less Ken, but I took it for what it was worth and said that he hadn’t been feeling well so he stayed home. She sighed, “Oh. That’s too bad.”

Matthew comes to see her daily; the rest of her children and grandchildren come on occasion. Separated by hundreds of miles keeping in touch in a physical way is difficult. Additionally, most of her friends are gone – separated by a spirit world. Again we could say, “And Then There Were None.” Life has a way of making such gradual changes that we hardly notice until we look around and see how alone life can become. Sadly, that applies not only to money, but to family and friends as well.

I wheeled Eva back to where I had found her, reminding the duty nurse that she was back. “It’s good seeing you looking so well,” I told her, giving her another hug and a quick kiss on her cheek, “I’ll come again soon.” She smiled and said, “Thank you.”

photo courtesy of http://www.seniorliving.org/

Originally posted 2011-09-03 20:09:03.

FORGETTING WHAT SHE DID BEST

old fashioned canned food

Once a multi-talented woman, Alzheimer's took away Irene's ability to do any of the things she was so talented at, including canning food.

My mother, as I have mentioned before, was a multi-talented woman.  I doubt there was anything she couldn’t do once she set her mind to it.  I recall as a little girl someone had given us their old couch shortly after she and Dad moved the family to San Francisco in the middle of The Great Depression.  You might say the springs of its life had sprung.  Not only the springs in the foundation, but the springs in the three cushions bulged in every which direction – no foam rubber back then.  For a family who was without a couch, however, it was better than no couch, but its sorry-looking condition didn’t last long.

Mother went to the library and found herself a book about upholstery.  Little by little she tore the whole thing apart, bought some twine, fabric and several boxes of carpet tacks.  Following directions from the book it was only a few weeks before she had all of the springs retied, cushions and sofa sewed and/or tacked in place with a new fabric. Abracadabra!  We had a “new” chesterfield, as a sofa was often referred to way back then.  That’s just a sampling of all the things she continually did to make our rented “flat” a home.

In the kitchen she bottled a goodly supply of fruit, made jam and stored staples to make sure we would always have something to eat during an emergency, such as my dad being without work.  Mama also read books on nutrition.  A well-balanced meal with the necessary food groups became part of the way she cooked and served my father and her three growing daughters.  She had saved her spare nickels and dimes to purchase a set of waterless cookware to preserve each vitamin found in the food she bought.  Every so often we pleaded for fried potatoes like Aunt Esther made, but Mama was firm in her knowledge that potatoes cooked with the skins – and steamed — in three tablespoons of water were better for us that those occasional greasy fried potatoes at Aunt Esther’s house.   I know we didn’t appreciate her chosen, healthy lifestyle, but I’m also certain we were the beneficiaries of her good, nourishing meals.

Life, though, wasn’t all steamed potatoes and veggies, she made delicious bread and the very best Parker House rolls in the world.  No matter how hard we girls tried as adults nothing we made compared to them.  With no convenience foods and no boxed cake mixes, any desserts Mama made were from scratch.  Furthermore, the fruit from the jars in the dead of winter was a treat in itself.  So was the jam, especially when spread on one of the Parker House rolls.

Even though we resisted, my sisters and I grew up knowing what was nutritious and what wasn’t.  Who could have believed grocery markets of the future would be flooded with everything one might want packed into a box with more vitamins in the cardboard than in the food inside.  With her example before us and our acquired knowledge of nutrition, we three girls continued with most of her ways when we married and began our families, keeping in mind, always, what was good for us and what wasn’t – perhaps allowing our children a little exposure to what is commonly known as junk food.

When she and dad left San Francisco and retired to “The Little Farm” in Sonoma County, she continued with her healthy lifestyle.  Planting additional fruit trees and a vegetable garden, my mother fashioned them after what she had known in her youth and young adulthood. Back then, everything was organic, grown in nature’s own way, but no one had put a name on it.  Her modern-day garden was cared for in the same way long before it became the popular thing to do and had a special name, and summer visits from Mom and Dad always included a few buckets filled with fresh-from-the-garden produce.

They had a wonderful 20-plus years of retirement before we realized she was becoming mentally ill, and my father  recognized the need to move closer to us.  “She just doesn’t do much of anything anymore,” he sadly explained, adding that he was having problems with his own health. A few years prior she had forgotten about the fruit trees, overgrown bushes and her garden, spending her time reading, something which had always been one of her great pleasures.  It appeared she had lost all motivation in continuing with so many of the other joys where she had been so capable.  I visited one day while she was still making an effort to do some of her favorite things.  On the work table in her sewing room I found a small platform rocking chair.  She had managed to remove the old covering getting it down to the bare frame.  I commented about her work and asked to see the new fabric she was planning to use, hoping to spark an interest.  Dismally, she asked if I would take it home.  “I don’t know how to do this anymore.” she stated.  “Can you finish it?   Being my mother’s daughter, I could, and I did, covering it with a pale blue fabric dotted with small pink flowers.  It was perfect next to our fireplace.

When they were ready to move I spent a week with them packing.  My niece, Dee, who lived in the area, came to help.   Stimulated by our activity, Mama bustled around with a bit of excitement much like her old self.  She supervised in her own way and actually made a few good decisions about what we should pack and what we could toss.  I was pleased with her participation.

When meal time approached Mama said she would prepare dinner for us if we wanted to keep on working.  Dee and I agreed and she scurried off to the kitchen.  Several minutes later she returned with a spoon filled with cooked ground beef for us to taste.  “What else do you think this needs?” she asked.  We both took a taste as Mama looked on.  Had I not know the ground beef was fresh I believe I would have declined dinner.  Neither Dee nor I could figure out what she had added to make it taste so awful. In response to her question I suggested, “Tomato sauce, add a can of tomato sauce.”  “Maybe a bit more salt,” advised Dee.  Off she went, back to the kitchen.  Dee and I looked at one another as she asked, “How can anyone make hamburger taste so bad?”

It wasn’t long before she called us to dinner.  Dad wolfed it down with no comment.  Perhaps he was getting used to her loss in creating quality cuisine.  Dee and I stared at our plates filled with non-descript food.  Looking around, we spotted a few empty cans and some trimmings from vegetables, so we felt assured dinner wasn’t going to do us in.  Good, it was not, but we muddled through.  Besides, we were hungry.

Alzheimer’s does that to people.  No matter how capable Mama had been, AD was taking it all away.  Over the next year or so her decline picked up speed, and when my father no longer could identify his food he took over the cooking.  “I’ve done it before and I can do it again,” he stated in a matter-of-fact manner.  Eventually, it became necessary to hire a caregiver to be with them for the remainder of their lives.  Besides caring for Mama and her child-like ways, Jayne also did the cooking.

I think often of Mama and the example she set, of the security we felt during the dark times of the Depression as she made sure there was food in her larder for us and comforts in our home.  Perhaps it wasn’t what we thought we wanted, and at times it probably lacked in abundance, but we felt secure.  We weren’t really aware of their struggle – only in retrospect did we grasp the fear and uncertainty they must have felt.  With adult understanding, we were – and are — filled with the utmost admiration.

I am grateful so much of her has stayed with me.  I know that when I pull out my jars, lids and cold-pack caner as the apricots ripen on our tree or when I stir a kettle filled with bubbling applesauce, Mama is not far away – watching and pleased that her daughters have learned about being self-reliant, about making do with what we have, or doing without.

There seems to be an ebb and flow with economics in this life which, at times, renders us to be more frugal than we might want to be.  No one knew better than Mama how to deal with difficult times, and she handed that legacy down to her three girls. Recently, I have noticed the small, blue platform rocker next to my fireplace is getting rather shabby.  Years have slipped by since I brought the bare frame home at Mama’s request.  Perhaps instead of replacing it, though, I think I’ll just recover it – again — using the knowledge and skills that I not only inherited — but observed and learned from my wise and talented mother.

Originally posted 2011-07-24 04:30:30.

A FATHERS’ DAY GIFT FOR DAD

Father's Day gift

Most times the best present of all is a visit from a loved one.

“What should I get for Dad?” seems to be one of the most-asked questions falling from the lips of all children whether they are adults or still youngsters.  I recall Ken asking his mother, Rose, what we could get for his father as the arrival of either his birthday, Fathers’ Day or Christmas popped up on the calendar. I wasn’t any better with my dad.  The needs of these two men were next to nothing – minimal – and even minimal was too much.  They had everything they wanted and if they wanted or needed anything else, it seemed they just went out and bought it.  So much for gift ideas!

Nevertheless, we tried, and our children tried.  We might upgrade Dad’s hammer or get a new set of screw drivers, but how often could we do that.    Ken’s father was so funny about gifts.  He loved having us congregate for his birthday and other special occasions or for no occasion at all. But on present days we wanted so much to find something special for him; something he would remember and enjoy – from us.  Nick was an appreciative man, and when he opened our gift we were certain we had selected the perfect item.  Gushing with enthusiasm, he held it up for all to see exclaiming loudly, “Thank you very much.  Thank you very, very much.”  And he was sincere.

He blew out the numerous candles on his cake, and then Rosie served slices of her yummy chocolate confection with ice cream and 7-UP for all.  He was the life of his own party even if they were always the same. 

Lovingly, he would stand at the door as we left expressing how much he appreciated our coming and thanking us over and over for the gifts.  Then he would say to one of the older boys, “Why don’t you take this home?” handing him the after shave lotion which was the gift from Loretta.  To Ken he offered the screw drivers our children brought, and Loretta got the hammer. “Please,” he coaxed, “take these home.”  Now we, the guests, were the ones saying, “Thank you.”  Every gift-giving session with Nick ended in the same way.  “And thank you too,” we all called back relieving him of his just-opened presents. It was useless to object.  No matter what we brought to him, he gave it back to us, or to one of the other guests.  We all just shook our heads and laughed.  I suppose the gift he wanted most, and received, was having his loved ones near: our presence was his present.

My father wasn’t much better although he did keep everything.  He was a handyman so he used the tools, but when they moved and we cleaned the medicine cabinet we tossed the old after shave lotions with the seals unbroken certain the fragrance was long gone – or worse – drastically changed.

Ken was different, truly loving everything given to him.  His interests and collections covered many bases.  A kid at heart, our children and grandchildren knew they could even buy him toys, which the children were allowed to enjoy, but only with Grandpa.  Furthermore, he never gave any of them back.  He was not like his father.  Having once worked for the railroad he was the recipient of a phone shaped like a train locomotive, a miniature train and railroad station which in reality housed a clock announcing the hours with train whistles and a conductor shouting, “All Aboard.”  Grandpa was showered with trains of all gages from “N,” and “HO,” all the way up to match the train he had as a boy. The shelves were lined with miniature cars, trucks, semi cabs with trailers, and heavy equipment.  As a Navy man Ken enjoyed the tiny replicas of WWII battleships, cruisers and PT boats, “The Lone Sailor” figurine standing watch, and to hold up a section of Navy books our son had given him anchor bookends.  One year I asked our daughter-in-law Peggy to finish a hooked rug bearing the Navy seal which Ken had started but never finished — being the great procrastinator.  She did, and he was thrilled as we hung it on the wall. Ken even let everyone know he collected teddy bears.  His home office was the envy of all the grandchildren looking more like a shop filled with collectibles than a serious spot where the man of the house wrote monthly bills and figured his taxes.  After all was said and done I found it to be an endless chore to clean, and a pain and a half to dust, which I did, but only if and when Ken was willing to help.

He also enjoyed new shirts, new wranglers and new ties.  His first gift tie came from our daughter, Julie, when she was 9.  With white-elephant donations through the PTA and a two-day sale, the children were able to purchase affordable gifts for dad come Fathers’ Day.  Selectively, Julie chose the prettiest tie in the whole lot — a wide, hand-painted number sporting a garish Hawaiian sunset that was certain to blind onlookers.  He wore it all day — even to church.  “Nice tie,” commented the brethren – knowingly — “Fathers’ Day gift?”  He nodded and they all smiled.

As Alzheimer’s took his mind, it also took his happy spirit, his joy, and his sense of humor.  His curiosity about a colorfully wrapped package slowly ebbed until there was no longer any interest.  Even the greeting cards that were enclosed are now without meaning – just something to look at and toss aside.  So here it is again: Fathers’ Day, and the question still arises, “What can I get for dad?”

Whether it’s Dad’s Day, Mom’s Day, or Aunt Elaine or Uncle Tony’s birthday, or anyone else’s special day who is stricken with any of the vicious mind diseases the answer is usually the same.  “He/she really doesn’t need anything,” or the caregiver may say, “How ‘bout some new sweat clothes,” realizing the uniforms of the day are looking a bit shabby.  The only real need the victims may be aware of is a need to be fed when they feel hungry.   A plate of cookies brings a sparkle to Ken’s eyes and he might say, “Those are mine, thank you.”  So cookies are always a good gift, or candy; both can be rationed if there is a health problem.

Other than sweets and treats one suggestion as the best of gifts for the afflicted, and the caregiver as well, would be time – your time – time in the form of a visit given by friends and time given by family.  Not a lot, stay for just a little while and then you can leave, but please come again.  From what we, as caregivers observe AD has stripped their memory of everything once held near and dear.  Ken’s face is usually a blank wall as he stares up into the face of a visitor.  Perhaps, he may shake hands – or not.  Typically, there appears to be no recognition, nor does he make much of a comment as he did during the earlier stages of the disease.  At times Ken is chatty, or he may ignore the visitor altogether, or take a nap.  There is no “best” time for a visit.  Most of the day he is unpredictable; at times dozing off while the visitor sits nearby wondering what to say next.

Later, though, after someone has come and gone, and toward the end of the day Ken seems a bit calmer, more pleasant, happier if that’s still possible.  Prehaps deep in his soul the voice of the “stranger” works its way through the slime covering the brain and settles in a place that brings him the most comfort: in his heart where he may feel the reassurance that he is still cared for and loved.

Originally posted 2011-06-17 19:17:10.

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