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The Romick family, long before anyone thought of Alzheimer’s.

August 11, 2012 — So much has been written about family participation in helping with an Alzheimer’spatient. From what I have read the percentage of those willing to help and those willing to watch is way out of balance. I don’t have the statistics; furthermore I doubt there are any truly accurate stats because involvement in caregiving is such a personal family issue. However, I would venture to say that the numbers

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My granddaughter Katie and her new husband Brian

July 20, 2012 — Alzheimer’s is a prison for the victim and often for the caregiver. As caregivers, especially those of us who care for our loved one at home, we struggle against the confinement. Keeping our head above water in the never-ending stream of responsibilities and duties we must fight diligently to give ourselves the needed breaks we not only deserve, but desperately need. I periodically write about “breaks” for

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Showers can be difficult for Alzheimer’s caregivers.

SHOWER: I CAN DO IT MYSELF

July 27, 2012 — Today was a good day with Ken even though Alzheimer’s has taken him very deep into self. I have often wondered about the deep dark pit of self and what parts of personality might be fragmented in this lonely place. I wonder if it’s terribly crowded there because every so often a glimmer of self slips out and pays us a brief visit. Identifiable only that it was Ken.

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2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 8,500 times in 2011. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

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Valentine's Day is a celebration of love, remembered or not.

There it was, much to everyone’s excitement, in all of its gaudy decorated glory: the Valentine’s Box sitting proudly in the back of the classroom.  Covered in finger-scalloped crepe paper and shiny hearts of red, white and pink by a few of the teacher’s artistically talented students, its message was clear.  The ordinary, newly transformed cardboard carton became a treasure trove  for valentines: small tokens of affection from one student to another.

At home you either made cards, or your mother bought a couple of books filled with “punch-out” valentines printed on both sides, or a package filled with 36 cards and envelopes for all your little friends – plus one for the teacher.  The day before the 14 of February, as you walked out of the classroom door with your lunchbox, books, papers and coat, the teacher stuck one more printed paper into your outstretched hand which included names of every single boy and girl in the class.  That was her way of saying, “Make sure you give everyone a card.  We don’t want any student to be forgotten.”  That was Valentine’s Day in elementary school.

In high school, they dispensed with such childish frivolities as elaborate Valentine’s Boxes, the day being just another school day, except that everyone was looking forward to the coming Friday night Valentine’s Day dance held in the boy’s gym.  The other exception was the special cards stuffed through the vent slots of certain lockers by handsome young swains and adorable girls, most being part of the popular group — the cliques – the in-kids; then there was everyone else.  That was my group: everyone else.

However, that exclusivity didn’t stop “the-everyone-else group” from having crushes on certain members of the opposite sex with whom no one outside of the cliques had a screaming chance.  For many of us, we took our non-couple status and dared to pursue the unsuspecting hunks on this special day of love by stuffing our own cards through the vent slots of their locker.  

My carefully chosen small token of affection for the dark-haired quarterback, which I signed with a question mark, was a sad-looking street urchin sitting on the curb.  The cover caption read, “Gee, Valentine’s Day ain’t no fun……,” continuing inside with, “…… ‘specially if you don’t got cha one.”  Other than having my English teacher suffer with an acute anxiety attack had I permitted her to read the grammar, the card was a total bust.  Mr. Football Star never knew I existed, and certainly didn’t much care who the unfortunate one might be with a name like question mark.  And that about summed up Valentine’s Day in high school.

Then I grew up, got married and in the doing I acquired my very own permanent and forever Valentine:  Ken.  We continued the romance of Cupid’s work with small tokens of affection on February 14: cards to one another, and cards slipped under everyone’s plate at dinner time when the children were small – and not so small — or a handful of candy hearts in their lunch box – just to say “I love you.” In return, their handmade cards for us were taped to the living room window for all to see.  And then the children grew up, married their own Valentines and moved away leaving just the two of us once again.

One year, while driving in the car I heard a radio DJ announce a Valentine’s Day contest with first prize being a get-away weekend for two at a romantic resort up the coast from San Francisco.  To win, all the contestants had to do was be the maker of the most original Valentine.  “Just mail your entry to the radio station where it will be judged, and the decision of the judges is final.”  “Simple enough, I can do that,” I said to me. Based on a childhood poem about a tin whistle, I cut up some tin cans, fashioned them into a greeting card with my own original “tin” verse and sent it to the radio station.

Did I win the weekend for two at the quaint romantic inn on the coast?  No.  But I did win 3rd prize:  A champagne basket and a dozen long-stemmed red roses would be delivered to my Valentine at his work the Friday before February 14, which was Saturday.

Wouldn’t Ken be pleased to have such a surprise Valentine delivered to his office?  I was excited.  However, on that very Friday, February 13, I received a second call from the radio station telling me they were soooo sorry, but deliveries were limited to San Francisco only.  No deliveries to the East Bay where we lived and Ken worked.  My surprise bubble had been popped. “But you can come over and pick up the basket yourself,” encouraged the DJ, still apologizing.  I agreed that we would do that.

It stormed 24 hours straight on Valentine’s Day.  Nevertheless, we sloshed across the Bay Bridge, meandered up and down Market Street through sheets of torrential rain finally spotting the florist where the prizes were displayed in the window.  Ken pulled into a vacant place next to a flooding curb – into which I could not avoid stepping.  He waited patiently in the car while I dashed through the rain into the shop where I picked up my prize – his small token of affection from me.  “Happy Valentine’s Day,” I crooned, handing him the beautifully filled basket — me and the prize dripping wet.  I’m still not sure if he felt the water-drenched trip was worth the Valentine, but he gave me a quick kiss adding – almost grumbling — “Thank You,” as we began the soggy trip home.

He gave the champagne to our neighbor while I rearranged the long-stemmed roses.  They were lovely on our intimate table in front of the fireplace where I finally surprised him with a cozy dinner for two.

There have been many other days celebrating St. Valentine, other dinners and other roses –with  none quite as memorable.  Never, have I made a more supreme effort to say “I love you” than with that small token of affection.  Nor, do I suppose, has he ever ventured out in such miserable weather just to make me happy while I was striving so hard to make him happy.  A paradox, you might say?  Probably — but such are the Valentine’s Days of devotion to someone you love — and to long-term married life.

Presently, I do believe Cupid’s quiver is empty at our house, but the cute cherub still hangs out here reminding me that small — and large — tokens of affection aren’t always tangible.  Nor do I need to get shot with one of his tiny pointed arrows to remind me that I do love this man.  I don’t love the strangeness that makes him who he is not — stealing him from me —  or the demons who keep him imprisoned within himself.  It’s Ken, who is losing his battle with AD — who has fought so hard for so long, that I love — and such is Valentine’s Day when you live with Alzheimer’s disease.

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Remember years ago when you heard that catchy little ditty insisting you needed a break. Not just needed, but you deserved a break today….…..at McDonaldssssssss……..  Did you know the bouncy little singer was none other than Reba McEntire working her way up the ladder of success?  Such a perky voice, and the ad was presented so favorably the words and music soon became one of those songs that remained in your head for days – then you heard it again and again – so often, in fact, that it never left your mind.  You either hummed it day after day, or you put words to the music – just like Reba.  Eventually, McDonalds ran a new slogan and Reba went on to bigger and better things, but still — those words and music linger.

Lately – and it’s been years — I’ve found myself singing the silly little song once again.  Actually, only the first five words which were prompted by a dear friend who believed that I did – need a break – deserved a break – and today — and often.  However, it wasn’t that day and we didn’t go to McDonald’s.  Instead I met Sandy, Shirleen and about eight other women a few days later at the Olive Garden for lunch.  Wow for me!

During the day, when caregivers are here for Ken, I do get out – really I do — all by myself.  I’ve been doing that a lot lately: the bank, the post office, doctor visits, knee therapy at the gym’s swimming pool, grocery shopping (last year’s Christmas gifts for everyone done in one crazy afternoon in November – of course everyone got the same thing — slippers), and if the timing is right I have even attended church.  Are those breaks?  It is getting out, or is it a bunch of stuff on my “To Do” list?  Doing the “To Do” list — is that the same as taking a break?

 Before last February’s accident, Ken and I went everywhere together.  When I wanted a break, I said to him, “Let’s go to the movies,” or “Let’s go shopping.”  We also dropped by for short visits with friends, and on occasion we stopped for a quick bite to eat where we didn’t have to wait for service or the check.  He was too impatient for that kind of waiting. We also went to Jayne’s house every Monday evening for dinner.

I didn’t have caregivers BTA, so, admittedly, I didn’t have lunch with the girls, but that was all right. While we weren’t blazing a trail into high society, we did get out, and I have always enjoyed Ken’s company, despite his Alzheimer’s.

So when Sandy said, “Join us for lunch on Tuesday, and maybe a movie and lunch again on Wednesday,” I said, “Okay.”  A little overwhelmed by so much all at one time, I decided I’d go slow beginning with lunch on Tuesday.

In many ways I’m still a “working woman.”  I’m one of the three caregivers at this house, and a manager: managing Ken’s care, our finances, our rental property’s finances, supervising the maintenance of that property and our own, plus “whatever else” there is, and it seems as if there is always something — and I write.  Nevertheless, Sandy and Shirleen are on target; even a working person needs – and deserves — a break.

I knew all of the women at lunch, but together they were a group.  I found it was just a bit intimidating to be a new kid on the block.  However, they couldn’t have been more welcoming.  Sandy sat next to me and Shirleen sat across which made me feel comfortable.  We ordered and while we waited, the conversations began.  “You’re grandson just had a birthday,” quipped Anitra to me.  For a minute I was lost and it took me a few seconds to remember that Mike and her son were good friends with their birthdays just a day apart.  “Oh, oh, you mean Mike,” I finally answered, feeling a little dismayed that it appeared I had no idea what she was talking about, and worse, that I hadn’t remembered my oldest grandchild’s birthday.  (I did remember and had already sent greetings.)  Obviously though, I was still feeling a bit off balance.  Was I losing my social skills?  “All work and no play….” Was it making me a “dull” person?

Surrounded by conversations I found myself nodding in the affirmative, because, for the most part, I’m used to being with Ken.  When we eat together he jabbers on and on and on.  For my own peace of mind, I tune him out responding periodically with a head nod, or “Really,” or “Is that right,” or “Gee — I didn’t know that,” all in an effort to give him the feedback his often senseless “remarks” need. 

Lunch with the girls was over and it was truly a refreshing afternoon, and then we would all go our separate ways.  I had those errands on my “To Do” list to finish, but before we left the table I told my group of friends that I wasn’t used to a “break,” and if they noticed me nodding in agreement to them or replying with “Really,” or “Is that right,” or “I didn’t know that,” they were to snap their fingers and tell me to “wake up and tune in.”  Yes, not only do I deserve a break, I really need one, and often.

So, in summing up my “break” day, I would advise the caregivers of America to schedule you some social time.  Not just time alone, time when you run those errands, but time with other people, and not only family. I know it isn’t easy, especially if you are the full-time caregiver.  Have you ever had someone ask what they can do to help?  Probably a lot of neighbors, friends and family have volunteered to “sit” while you go.  They mean it, accept the help and go have a little fun.  Beyond being a caregiver, you are still you and you NEED to be kind to you.  Remember, I’m not some disinterested person.  I’m someone like you – one of you — another caregiver advising you that you really do need – and deserve a break.  Just to make sure, write it down – in ink — on your “To Do” list.

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rollercoaster

The ups and downs of Alzheimer's can be worse than any roller coaster ride.

I dislike roller coasters. From the first time I visited Play Land At The Beach, which was   a very long time ago, I was wary of the ride – intrigued – but wary.  The ancient granddaddy of fun loomed over the rest of the concessions like the skeletal mid-section of a mythical dragon; a grayish monstrosity of what appeared to be old pieces of weathering wood which I believed to be untrustworthy even when I was young.

The amusement park was located right across from the Pacific Ocean at the end of the Great Highway and just a short walk south from San Francisco’s famous Cliff House.  Even as a pre-teen I could hear the rickety structure clickety-clack and rattle as each line of speeding cars roared up and down the  mountains of lumber and track finally screeching to a jolting halt at the end of the line. Frightening, yet I was fascinated.  “Oh come on you big baby,” badgered one of my older sisters.  “You’ll love it.”  Scary though it was, I wanted to love it like everyone else.

The three of us climbed into the seat, the attendant dropped the safety bar as my sisters warned, “Now hang on and never let go or you might fall out.”  Fear griped me and we were off. Climbing up was all right, but the descent was horrific. I hated every blood-chilling moment.  Furthermore, with each threat of death I repented of all my sins – however many sins a pre-teen could accumulate – I was penitent.

Time and time again, whenever I visited Play Land with my sisters and friends I was coaxed back onto the roller coaster with the promise from someone, “Oh, you’ll like it this time.  You just have to get used to it.”  Fear-stricken, I repented once again promising to be ever so good.   Still, I hated my skinny little body getting bruised, slammed and thrown around with each jerking turn.  Minutes later and facing the last invisible decline over what seemed to be the edge of the world, terror froze deep in my throat while other passengers screamed and shouted with glee.

As an adult and the mother of five grown children not much has changed regarding roller coasters except they’re bigger, better and faster as they race over the modern, steel-supported network of tracks.  Ken loves them, and always has.  He was probably one of those smart-alecky kids who laughed, yelled and held his hands straight up in the air on every downward dive.

At Great America, where we went for a family day, that roller coaster not only did the up-and-down thing, the tube-like car also spun in circles.  “You’ll like this one,” Ken had insisted.  “Come with me.  It’ll be fun.”  It wasn’t.  I repented again — and then found the ladies room where I lost my lunch.

Feeling sorry for me we had a 7-UP to settle my still-pitching stomach and found my kind of ride: those cute little boats that carry you through a maze of tracks onto an intermediate slope sending the passenger-filled boat into a boxed-in lake where, for thrills, you get a good splashing of water.

With roller coasters, Ferris wheels, merry-go-rounds, and even little boats now a part of our past, Alzheimer’s has brought us a new kind of roller coaster.  I don’t like this one either, and if Ken had his wits about him, he would be on my side.  Nevertheless, we’re both along for the ride whether we like it or not.  Unfortunately, there is no jolting stop where either one of us can get off – save it be death – or somehow a miraculous cure.  So we endure.

There are times when I see him fearful, as I was on that very first ride.  I know he is plunging into a down mood. “No!” he shouts.  “I’m not going.”  Going could be anywhere he’s doesn’t believe he wants to go, or it could be just his way of being independent.  Nevertheless, he means no — no to showers, to eating, to bed, for a ride, for a walk or to visit the doctor.  We might as well take him into the House of Horrors because he has that same expression of unknown fear in his eyes.

Later, when his mood changes to up, and he sees me not only as someone he recognizes, but as his wife, who he invites to sit beside him on the sofa.  I do and he puts his arm around my shoulders saying, “I love you.”  I sit closer and rest my head against his chest — snuggling in — and for a while it feels like old times – good.  His face is relaxed and he smiles when he looks at me.  For a while he is calm and quiet.  We just sit for as long as he’s willing — for as long as the up mood lasts.

His face begins to puzzle and I move away to prepare a simple dinner, hoping to have it finished before he becomes hostile.  Cleaning his plate with a crust of bread, his eyes begin shooting daggers at me.  “You don’t belong here,” he hisses, “get out of my house.”  I pretend to be accommodating and when he gets up to make certain I’m leaving, I close and lock the kitchen door behind him.  It’s good for Ken – and me – to take a break.

Quietly I watch him from around corners, and through a slit as I barely open the door.  He seems more peaceful sitting in a living room chair all by himself.  His mood is changing once again. “It’s cold in here,” I remind him knowing the ride is taking him up.  “Do you want to go where it’s warmer?”  He ponders my question, and then makes an excuse about why he can’t abandon his post or adjourn his imagined meeting.  I leave and try again minutes later – hoping he has forgotten my earlier attempt to get him into bed.

“Okay,” he finally agrees, his eyes groggy, and he follows me into the bedroom.  The covers turned back, he sits on the edge of the bed.   “You can put your feet up,” I suggest.  “With my shoes on?” he asks.  “Whatever you want,” I reply.  He still likes to make his own decisions, and then kicks off the moccasins, pulling his feet up onto the bed.

I place one of the blankets over him in much the same way I covered his children all those many years ago. “There,” I ask, “doesn’t that feel gooood?  Sooo nice and warm!  He is smiling, his eyes inviting.  “Do I get a kiss?” he asks.  “Of course,” I answer leaning over kissing him softly, gently; one more time as he whispers, “Goodnight.  I love you,”   “I love you too,” I reply, turning out the light.

The switch also closes the lights on the day’s roller coaster.  We’ve traveled through the gamut, which included Ken spitting in my face during the morning clean-up time with Ben, gouging my arm even though his fingernails are closely clipped, to the lovingness of a goodnight kiss.  Today is done, and I sigh with relief.  Some days the ride is more stressful than others, but no matter, we are forced to continue.  I hate the Alzheimer’s roller coaster more than all of the other electronic ones combined.

A few years ago, when his illness was milder, my sister asked, “How can you stand this day after day?”   I answered, “You just learn to live in the moment.  Don’t lament about losing the good times, or even begrudge the bad.  What we know for sure is that no matter where we are in any moment of our life it will change,” reminding her of our youthful pleasures and how happy those days could be, but they didn’t last and when they were gone we felt so wretched.  “Remember what Mama used to say to us during those down times — when we believed that life was the pits – she would remind us, ‘And this too shall pass away.’”

We all know that we can beat our chests and cry into the wilderness about how unfair life is, but it doesn’t change anything.  We can ask, “Why me?”  But there is no answer to that question.  We can be miserable and sad — or accepting – and in the accepting we can enjoy the small fragments of happiness which still come into our lives. Using the prayer of serenity you change those things you can, accept those things you cannot, and ask that God grant you the wisdom to know the difference.

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