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Posts Tagged ‘love’

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.

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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.

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 For the loved ones who have been entrusted to me – my husband’s and my parents (three out of four having Alzheimer’s) and now Ken who is well into advanced AD – I have always endeavored to do my very best as their caregiver.  If that sounds a bit martyrish, I don’t mean it to be.  Sometimes in life you just “gotta do what ya gotta do,” and all in all it’s been a labor of love and devotion.  However, at times I feel as if I’ve lost my identity — my very own place in the world — especially without Ken by my side to help me over the hurdles.  Feeling tired when the weather is scorching doesn’t help either.  Nevertheless, it’s still Ken’s well being that’s paramount, his comfort, nutrition, cleanliness and security – it’s all a part of my long-term goal.  Coupled, though, with managing our rental property, our personal finances and home, assistant to Ken’s caregivers, and all sorts of things that just pop up without warning, there are days when I can’t help but feel, “Hey?  What about me?”  I suppose Thursday was one of those days.

It was hot in San Francisco’s Bay Area. The East Bay, where we live, is several degrees warmer than the City itself.  Usually, weather conditions here are near perfect.  Once winter passes and the seasons get into spring and summer, the days are sunny and comfortable.  However, when the temperature zooms from the 60s to the 80s from one day to the next with no gradual warming period in between, people tend to be a tad terse.  Myself included.

Rental property was something Ken and I thought to be a good idea when we were younger.  It would be a wise diversified investment to our “portfolio.”  The venture has been a good thing all of these years when we both worked together, using our “How To” talents to restore, renovate and rent our real estate purchases, but now that Ken is unable to do any of the work, I find it impossible for me to do it alone.  We have great tenants who keep up the interiors, but the outside of our 4-plex needs constant maintenance and yard work.  Ken and I did all of that as well, but now there is just me and the person I hire.

Thursday is yard day.  With the heat already promising discomfort at 8:00 a.m. I wanted to call my help and cancel mowing, trimming and sweeping, but I knew I couldn’t. We did, though, manage with a minimum effort.  Still, my day wasn’t over.

Tuesday, the tenant in another rental called to report the toilet tank needed to be reworked.  He questioned, “Do you want to rebuild the inside with new parts, or with a crack in the bowl do you want to replace the whole thing.  Mason, my tenant, would do either task after he got home from work.  I opted to replace the whole thing, picking up a new commode at Home Depot (along with some new faucet handles for my deep sink) sometime on Thursday. How simple is that? Help from the store could load it into my pickup and Mason would unload.

“GET THIS TOILET FREE!” announced the sign at the beginning of the plumbing isle.  I found an associate and asked the secret for obtaining free merchandice (i.e. the toilet) still holding the handle of the flatbed I had rolled through the store for its purchase.   “It’s a water company rebate,” he explained reminding me that only certain toilets qualified for the promotion of $50.00 or $100.00 — depending on which water company provided the service — and only certain old toilets were eligible.  We began by examining all the features on the newest low-flow models.  “Do you have the correct measurement from the wall,” he asked.  “I don’t know,” I replied.  Shaking his head, he cautioned, “If you don’t a have a 12” space from the back wall to the bolt holes,  you can’t make the connection.”

Problems, problems, I thought.  Recalling how easy it had been when Ken and I shopped for toilets, I hadn’t realized I needed measurements.  We simply picked out a commode we liked at the right price, loaded our choice onto a flatbed and off we went.  I can’t count the number of toilets Ken has purchased and installed, nor do I remember if he measured for the 12” space, although he may have.  “I can’t answer that question,” I said, wishing my cell was in my pocket.  It wasn’t.  “I’ll be back,” I promised pushing the flatbed, which held the faucet handles I had picked up first, to the nearest check-out.

I drove to the rental, rang the bell and Tara opened the door surrounded by her little ones.  I explained my mission, and with my small pocket tape she stooped (even though she is very pregnant) and measured the distance from the wall to the bolt.  “Twelve inches,” she said.  “Good,” I replied, “Thank you.”

Back in business I waved to the children and drove again to Home Depot, glancing at the clock.  I needed to get home to help Criz with Ken, but there was time enough if all went well. After all, what’s the big deal about buying a new toilet?  My associate saw me coming dragging another flatbed.  Quickly, I made my selection.  After all it wasn’t a fashion statement.  “Let me see if this model is listed to qualify for the program,” said the associate, reminding me again that all styles didn’t.  Checking the computer, he then went to the phone, and then to the printer.  Returning minutes later with several sheets of paper he began to survey the qualifying numbers and brand names.  I checked the time and was tempted to say, “Forget the rebate,” but I didn’t.  The $50.00 was better in my pocket than in an account belonging to the water company, so I waited.  Besides, with water rates going up they would get their money back soon enough.  He studied the list and compared numbers.  Finally, he said, “Here it is,” pulling the box from stock and loading it onto the flatbed.  He handed me a paper with the numbers underlined.  “Take it to the contractor’s register at the end of the store and someone will load it for you.”  Feeling a bit relieved, time still on my side, I rolled the flatbed to the directed check out.

Of course, there was a long line even at 5:45 in the evening, but I was committed so I waited.  Finally, it was my turn. “I need someone to load this onto my truck,” I said to the cashier handing him a credit card.  “Just drive up to the door and you’ll have help,” he assured me.  I parked, climbed out of the driver’s seat  and hurried inside saying, “I’m here.”  Time was running out and I should be home.  Criz may forgive me for being late when he sees I’ve purchased new handles for the deep sink – the deep sink being an important part of Ken’s evening clean-up.

I sat in the pickup waiting.  It was hot and I was getting edgy as time slipped away.  Suddenly, I began feeling angry.  Why isn’t Ken here and why does he have to be sick?  If he were here we could load it together and be gone. Doesn’t he know how much I need him – how much I miss him – and besides, what about me?  Who am I anyway? I’m his wife, but I’m not a wife; feeling like a widow, but I’m not his widow either.   He’s here, but he’s gone.  Why did he desert me leaving me to fend for myself?  That’s how I felt – as if I had been abandoned – the way he felt last month when I wanted to go to the bank.  Here I was left alone, deserted, with no one to touch my shoulder and reassure me that everything was going to be all right.  No one can rescue me and it’s never going to be all right.  I felt my eyes begin to puddle.

Finally, I spotted my desperately needed help as he appeared through the exit doors wheeling the flatbed toward the truck.  Quickly, he dropped the tailgate, and without a hitch the damn toilet was on board.  “Thank you,” I mumbled, holding back the gathering storm.  Inside the cab – with a small amount of privacy — I permitted a few tears to flow.  Not a lot and not for long, just enough to relieve the pressure behind the dam.  Besides, it’s not safe to drive and cry, and Criz is waiting.  One day they will flood out – my lake of tears — when I have the time, place and another frustrating reason to allow for such a luxury as a good, hard, sobbing cry.

At home I handed the faucet handles to Criz.  He smiled.  We had removed the originals a good while back because Ken, when no one accompanied him to the bathroom, always left the water running, at times flooding the floor.  Eventually, one handle became lost and Tuesday the second one fell behind the washer.  Opening the package we found that another customer had “taken” the screws. Tomorrow I will return the set to Home Depot, and buy another.  This time I’ll check to make sure all items are included.  The good part is I will be rested, the weather cooler, and after all is said and done I’ll be fine – until another unbearably hot day and another broken toilet.

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Young hand with older hand

The helping hand of service comes to young and old alike.

“Do I have to go?” whined my 14-year-old son, hanging up the phone.  “Go where?” I asked. “And who was on the phone?”  “It’s that old guy from church.  He reminded me that I’ve been assigned to be his junior companion,” he continued.  “We’re supposed to go visit some more old people to make sure they’re all right.”

Although his description was lacking in cheerful good manners and enthusiasm, I had to admit it was honest and somewhat accurate.  I smiled in spite of myself knowing what he was talking about and I also knew who had called.  In our church, the goal is to have every member visited by another lay member of the congregation, representing clergy, on a monthly basis to make sure that all is well in the home, and to leave the family, or member, with a Gospel message.  The old guy to whom Keith had referred, those many years ago, was about the same age as Ken, and each old guy had a junior companion called to do this “duty” at age 14.

“You don’t have to go,” I reminded him.  “You do have a choice, but you know you should go — and with a willing heart.  It really won’t take very long, and guess what?  When you’re finished you will feel good about yourself because you have extended service to those who may be in need.  Perhaps just your visit and concern will bring someone a bit of unexpected happiness.”

It wasn’t as if he hadn’t grown up doing good deeds and giving service.  He was a wonderfully thoughtful young man.  Helping his grandparents on their little farm out of Sebastopol was service, but it was also something he wanted to do.  Carrying in groceries for a neighbor was what he chose to do.  Being kind and doing favors for others was part of his nature. Being a junior companion was an assignment by clergy, and different from what had been familiar. He wasn’t really certain if it would fit into his comfort zone.  It was also a step up the ladder in extending service.  Nevertheless, he also understood he was free to accept or refuse the assignment.  When the doorbell rang, though, he greeted his senior companion with a smile and a hardy handshake.

An hour or so later he popped back into the room wearing a happy face, and informing me that he “Kinda liked the old guy.”  Then he added, “You’re right mom.  I do feel good and I’m glad I went.”

Whatever the ingredient that makes us feel good following service to others appears to be a mystery; must be some kind of magic that fills our soul and lifts our spirit.  Or, possibly, it isn’t a mystery at all, nor is it magic. Wasn’t Jesus the example for extending service as He healed the sick, paused to give counsel to the wayward, blessed the children, caused the blind to see – the crippled to walk, and cured the lepers?  Could it be that our hearts are somehow touched by His Spirit when giving Christ-like service?

Many are drawn to serving others through career choices: doctors, nurses, health care providers and caregiver professionals just to name a few, but that isn’t the service to which I am referring – although greatly needed and appreciated.  It’s the giving of service without compensation that is true charity: service such as provided by the valiant sisters of the order and Mother Teresa.  While we all can’t dedicate a lifetime to mankind, it’s that spirit of charity which needs to be embraced.  For many, however, this kind of understanding, learning and making it all a part of our lives is a process.

Granddaughter Kristina and her boyfriend Chris had dropped in Valentine’s evening to say hello and stayed for dinner with me and Ken. Then they were off, but not to a party.  Instead the two visited with a disabled couple she had worked for during the past year.  A few days later she told me it was the nicest Valentine’s Day ever.  I asked her what she did that made it so special.  “I spent it with some people I love,” she answered, smiling at me.  I gave her an extra hug saying that I loved her too — and brushed away a tear.

Was her grandfather fun? Was I fun?  How about the disabled couple?  I doubt any of the four of us were a barrel of laughs.  Yet, she felt good about the visits, and I said to me, “She is learning.”  It tells us in Proverbs, “Your own soul is nourished when you are kind.”

So it is as we journey through life we mature and appreciate that our time here needs balance and is made better by many experiences, both good and bad.  It is never made whole with only pleasure and fun.  Actually, it’s just the opposite beginning with some kind of sacrifice —  extending the hand of help and service that helps build our firm foundation – the most important part of us for a truly balanced life.

Admittedly, there are times when we feel we are out of balance.  When the weight of what seems to be never-ending adversity causes us to wonder and ask, “Why me?”  The old axiom, “You have to keep on doing it ‘till you get it right” might be funny when applied to justifying your bank statement, but caring for someone stricken with the likes of AD seems to make one crumble in frustration of doing the same thing day after day wondering if you’ll ever get it right.  Will there will ever be “a time for me “ – a time when this weight will be lifted?  Maybe “yes” maybe “no,” but it’s in that interim where we can concentrate on and accept “what is,” savoring the positive which can come from the negative: the positive being the building of our own strengths and character.  Have I arrived at this destination?  Goodness no, but I’m striving daily in that direction.

Ken and I are into the eighth year in our battle with Alzheimer’s, and I’ve come to accept it as the way of our life for as long as it lasts.  His mind is without memory or reason, but his physical health is very good.  Through these past years I have felt the highs and lows of just about every emotion I can name, gnashing my teeth, shedding tears (I still do), and pounding my fist into a pillow (not anymore) with little changing except Ken’s AD becoming worse. I am certain most caregivers have felt the same anger, frustration and defeat until they reach up to Him who can bless them with peace.

As acceptance became a focal point for me I have learned to be more relaxed, relying on another sage bit of advice, “Let go and let God.”  I strive to do that for I know I am not alone.  I know that my Lord is with me bringing comfort when I despair and guiding me along this rocky path.

I am constantly learning and looking for new ways to be more helpful to the man I married; the man to whom I promised my love through sickness and health, and to care for him in his time of need.

In my role as caregiver, delivering service to Ken who has been my loving companion for more than 5 decades I am reminded, and will quote once again one of my favorite scripture passages.  This one from Matthew when Jesus said, “For I was hungered, and ye gave me meat; I was thirsty, and ye gave me drink.  I was a stranger, and ye took me in, naked, and ye clothed me; I was sick, and ye visited me. I was in prison, and ye came unto me. 

 Then shall the righteous answered him, saying, Lord, when saw we thee and hungered, and fed thee? Or thirsty and gave thee drink?  When saw we thee a stranger and took thee in? Or naked, and clothed thee? Or when saw we thee sick, or in prison, and came unto thee?  And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”

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Ann Romick as matron of honor for her best friend, Julie

Ann Romick as matron of honor for her best friend, Julie

Last week my friend Bob came for a visit.  We hadn’t seen him and his wife, Julie, since they celebrated their 50th wedding anniversary the summer of 2006.  She died on Thanksgiving Day last year.  For me, it still seems unreal and difficult to grasp.  After all, it was only yesterday – or so it seems — that she and I chatted on the phone just like old times, the gaps in time and distance vanishing as soon as we began talking.

Julie and I met while working in the 22-story office building on the corner of Bush and Sansome Streets in San Francisco which was better known long before the 1950s and early 60s as The Standard Oil Building of California (now Chevron).  The two of us were employed by the mega oil company and assigned to Central Steno, located in a gigantic room taking up most of the 2nd floor.  It was filled with copy machines, typists, stenographers, Dictaphone operators, Varatypists and all sorts of other specialists in the clerical department.

Despite Central Steno’s enormity and scattered personal, Julie and I bumped into one another at the morning coffee wagon and became instant friends.  She, newly arrived from Santa Barbara, and I, a local, could have been sisters. We looked alike, we thought alike and often dressed in similar outfits, except her waist was at least three inches smaller than mine requiring alterations on all of her clothes. However, we did have one other major difference: Julie was single and I was married to Ken with an adorable little girl, Deborah, and number two peeking up over the horizon in the not-too-distant future.

We lunched together, shopped together, and talked about her latest date or current beau — none of whom seemed to be Mr. Right.  If her weekend was uneventful I invited her to spend it with me and Ken at our new home across the bay from the city.  When number two baby arrived we named the little girl Julie after my new best friend.

The following summer Julie met Bob.  It was July 1st and they were married September 8th.  A whirlwind courtship and two months after meeting they tied the proverbial knot. I was her matron of honor.  And the skeptics said it wouldn’t last – only 54 years.  Bob was career Air Force and they traveled all over the world adding a girl and then a boy to their family tree. Meanwhile, she was the officer’s good wife, but still found time to study and develop her natural artistic talents — all in addition to being the best mom in the world to their growing children.

We kept in touch.  Then we didn’t, then we did, and then we didn’t, but we did manage to hold on to that thin golden thread which tied our busy lives together with short notes and cards sent every once in a while. That’s how good friendships are, and that’s where we were when my phone rang nearly five years ago.  It was Julie and she asked once again if I would stand up for her as she and Bob renewed their wedding vows in celebration of a half century of marriage.  Bob’s best man and his wife would be in attendance as well as lots of friends and family.  I reminded Julie of Ken’s Alzheimer’s, but told her I would make every effort, keeping her updated through email.

In spite of Washington state’s reputation for rain, the weather that summer’s day was fabulous:  blue skies and balmy breezes.  Ken’s proclivity to be social was at its best as he made friendly conversations with the other guests minus the stumbling blocks often associated with AD.

Bob and Julie wrote their own vows for the occasion, and this time she said she wasn’t going to repeat that “obey” thing.  They pledged, we clapped and smiled in approval, and they kissed – sealing another 50 years– the fates willing. No longer the whirlwind courtship love, it was now a comfortable love, the warm old-slippers kind of love, devoted love — the very best kind of love.  And now Bob was here with me and Ken – remembering — and Julie was gone.

I don’t believe Bob really expected to find Ken as deep into the depths of AD as he is.  “Ken’s gone,” he said after attempting to reintroduce himself and reminisce about some of our early times together.  I agreed, adding that Ken had pretty much forgotten everyone who was near and dear to him.  Occasionally, he will ask if I am his wife, wondering where his mother and father have gone – and his sister Loretta.  His persona seems to be “Buddy,” his mother’s young boy, the name I often use instead of Ken.  I believe it’s in that time zone where he feels most comfortable – if AD victims can ever feel truly comfortable in their confused and frightening world.

“I write about my AD journey with Ken in my blog,” I said to Bob.  “It keeps me sane – writing is therapy for me.”  “That’s why I do this,” he replied.  “I take the celebration of Julie’s life to those people who knew her and have shared in a part of our life together.  This is my therapy.  There are so many people who couldn’t come to the service — so I’m bringing it to them.  Following the funeral there is hardly time to really talk with anyone for any length of time, and then it’s over and they’re gone.  So much is left unspoken.  When I bring the celebration to others, we get to spend time just talking.  It’s been a wonderful experience.”

As Bob and I talked I realized that while we two can empathize with each other and share our grief, the therapy part is a day-to-day process, and healing will be yet another process for both of us to achieve as individuals.  Furthermore, we can’t be forceful or anxious.  It all takes time.

And we talked about the increasing presence of Alzheimer’s everywhere.  Bob’s father was also a victim.  As the oldest son, he was elected to take his father to a care facility when he could no longer be cared for at home.  Life gives us all difficult experiences with which to cope.  I suppose in coping we become stronger. Perhaps adversity is preparing us for what might be heaped upon us at some future date.  Meanwhile, we just keep doing what we’re doing.

Julie had continued with her art and developed a rather impressive following.  Once Bob retired from the Air Force he realized she was serious about her work and told her how he had appreciated her supporting him all through the military.  He would now give her that same support with her chosen career.

Remembering their 15 years on Maui, he said that once, while gazing at a 20’ wall filled with her paintings, he stood in awe of what she was capable of creating.  In his travels he carries CDs of their life and her work.  In addition are four folding panel boards to display either photographs of the work, or small original samplings to share with those he visits.  And he tells of her early life, their serendipity meeting and San Francisco wedding as part of his informal presentation.

Before he left on his journey to Ventura, I told him his continuing celebration of Julie’s life was one of the loveliest gestures I have ever encountered.  Seeing so much of her beautiful art, and hearing stories of their years which Ken and I had missed, I felt privileged our family had been included.  I was also able to tell him a few stories of my own about his wife that he had never heard.

For a few days my focus was taken away from Alzheimer’s (for which I was grateful) and riveted on a long-time friendship and the grieving of a good man who had lost his soul mate.  Seldom do life-long partners depart the planet together which leaves the one remaining alone to mourn the separation. 

With my belief in eternal progression I am always comforted that we will meet again and be reunited with loved ones.  It’s like Samuel Butler wrote a very long time ago when people traveled to the “Continent” by way of the old luxury steamer ships, “Death is only a larger kind of going abroad.”  If you consider that, dying really isn’t goodbye – merely “Bon Voyage.”

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

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

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

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

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

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

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

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

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

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

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

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

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Just after I finished my previous Blog, “Through The Storm,” I received a lovely email from my cousin, Penny, in Oregon.  I could see by the enormous block of addresses that she had, indeed, sent it to all of her friends and family.  It was one of those emails worth forwarding titled “I Pray For You Enough…..”  After reading it my thoughts were, “How nice.”  I had received a similar one a while back titled “I Wish You Enough……”  The contents were the same, the story line the same but a little different in that the prayer one involved a mother and her daughter, while the wish email was about a father and daughter.  I wondered if an original story had been written by the talented writer anonymous, and during the little email’s travels over the waves of the internet, the various recipients tweaked it just a bit to suit their own fancy, with change happening in small increments.  In any event I’ll briefly relate the story as if she were telling it:

“At the airport I was waiting for my flight when I noticed two women standing nearby.  So close, in fact, that I couldn’t help but overhear their conversation.  As the daughter said goodbye before rushing to her flight she said, ‘I pray for you enough……’  The mother returned the phrase, ‘and I pray for you enough……’ Tearfully, the daughter scurried off to catch her plane as the forlorn mother watched.  I could tell she was near tears, but I didn’t want to intrude.  However, she caught my eye, knowing that I must have heard their conversation and asked, ‘Have you ever said goodbye for the last time?’  I answered that I had, many times.  Tears began to flow as she sat down next to me, her sad words revealing that she had a fatal health condition and her daughter’s next visit would be for her funeral.

“While her explanation allowed me to know she was dying, I wondered about the phrase used by both women.  Timidly, I asked, ‘What did you mean when you both said I pray for you enough?’  She went on to tell me of a family tradition which had been passed along for generations, praying that their loved ones would have enough to meet their needs and to bring  joy to their lives.  Then, as if memorized she said,

     ‘I pray for you enough sun to keep your attitude bright no matter how gray the day may appear.

     ‘I pray for you enough rain to appreciate the sun even more.

     ‘I pray for you enough happiness to keep your spirit alive and everlasting.

     ‘I pray for you enough pain so that even the smallest of joys in life may appear bigger.

     ‘I pray for you enough gain to satisfy your wanting.

     ‘I pray for you enough loss to appreciate all you possess.

     ‘I pray for you enough hellos to get you through the final goodbyes.'”

Seven simple prayers covering just about anything one would need, except when life changes dramatically as it does with illness.  The mother was ill.  What would she need in the way of, “I pray for you enough……” for her condition?  And I thought of AD and Ken, and myself as a caregiver.  Not only us and our needs, but the needs of caregivers all over the world who have accepted this awesome responsibility of caring for the dying no matter what the cause.   (Please note I am not including prayer for healing because I’m only considering terminal illness where there is no hope.)  So for the patient, these six are a beginning:

I pray for you enough peace of mind to get you through the day without — or at least with only a minimum — of anger, agitation and mood swings.

I pray for you enough memory so you can take care of your personal needs: a shave and a shower without help.

I pray for you enough friends and family so you can talk, even if it’s only ramblings.

I pray for you enough strength so you can walk a short distance with your caregiver, and get from one room to another without help.

I pray for you enough respect and love from others, that they remember who you were and not what you have become.

I pray for you enough medication to keep you free from pain, to calm your nerves and allow you to relax and sleep.

As a caregiver, the most often-asked question I hear is, “What can I do for you?”  I have “Ken sitters” a phone call away.  I have friends who drop by with a meal for two, cake, a plate of cookies, a book to read, Monday night dinner at Jayne’s house, phone calls so I can sit and chat, friends who invite us to social events even if Ken acts strange, notes in the mail telling me they are thinking of us.   How blessed I am, but even with such awesome support we caregivers need all the help we can get — including prayers.  I have listed a few for starters:

 I pray for you enough sleep and rest.

I pray for you enough knowledge, skills, support and help in handling stress.

I pray for you enough friends and family with soft shoulders to cry on.

I pray for you enough patience to get through the day.

I pray for you enough memories of the good times in life and enough erasers to dim some of the worst AD has to offer.

I pray for you enough love and devotion from all those who know you, and enough knowledge to know you are cherished.

I pray for you enough faith to remind you (thanks Lynne) that there is life after Alzheimer’s and all of those other disease horrors.

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 When Ken and I first married, television was brand new with a lot of wrestling and a small handful of almost good variety shows.   That was about it for TV, with radio still being the major source of home entertainment for most people.  Gravitating to the living room after dinner, I recall our family members easing into his or her own comfortable spot, settling in and relaxing while tuning in our favorite programs.  With great fondness I remember my father’s chair next to the radio so he could push the buttons of the big Philco console.  My mother always had some sort of hand work to do (such as darning my father’s socks) while we all listened to an array of wonderful shows:  Lux Radio Theater, I love A Mystery, Bob Hope, Jack Benny or Fibber McGee and Molly.   Who needed to see a screen to follow the plot when our brains created the scenery, did the makeup, the costumes and even the set, placing the entire production on the never-ending stage of our individual minds. 

Moving into our first apartment where Ken spent most of the evenings studying formulas and math for his engineering classes, there were a few radio programs we both enjoyed, thereby allowing him to pull away from his books for a half hour or so.   One of our favorites was about problem solving.  Not the cute family drama-sit coms of today, but stories of life struggles; accounts of ordinary people.  The component used for their problem solving was their own personal discovery of the power of prayer.  Try though I may, the program’s name is long forgotten, but not their sign-off line which I have remembered all of these years:  “More things are wrought by prayer than this world dreams.”  I believe that with all my heart.

At times, I have noticed while watching Oprah a guest will say something like, “And then I prayed.”  Oprah will counter the statement with, “Why was your prayer answered and the prayers of others who are equally deserving not answered?”  Good question.  Garth Brooks had a song out several years back titled, “Sometimes I Thank God For Unanswered Prayers.”  So what does that mean?  For me it means that prayers are answered, but often we don’t like the answer we get, at least not at the time, as illustrated in Garth’s song.   It’s later that we understand the Father’s wisdom.  And sometimes our Father just says, “No,” and how often He answers in the negative because the die is already cast.  Our ways are not His ways, nor is our understanding His understanding.

I am a person of faith, but if I tallied up my life time of prayers I would be remiss in constant prayer.  Perhaps I would be kinder to myself if I said I was remiss in constant formal prayer.   I doubt I have ever gone through the day without some small needy prayer, quick thank you prayers and  hurried blessings on the food.  When life is bright and sunny it becomes so easy to take everything for granted, forgetting from where all blessings come; and then like others, I find myself turning back to The Father when that same life gets dark and dreary. 

It was a turbulent time when my adolescents passed through their teen years and how often Ken and I angst over their choices which we knew would bring them unmeasured sorrow.   One day, while driving to work, feeling particularly melancholy, an incoming storm poured down rain from the sky as if the Heavens were weeping with me.   I adjusted the wipers so I could better see the road and in so doing, the storm seemed to ease.  “Not really,” I told myself, “the storm is not gone, the windshield wipers are helping you see the way more clearly.”   The thought, “Just like prayer,” popped into my mind.  “Prayer and windshield wipers?”  I pondered aloud.  It seemed almost insulting to Diety to compare communication with Him to a part from an automobile, and yet the two shared that commonality.  Our family was going through one of life’s storms and prayer, like the auto part, while not removing the problem, guided us step by painful step through that particular storm until it had cleared.

When Ken was diagnosed with Alzheimer’s I spent a lot of alone time weeping and praying.  Never did I ask my Heavenly Father to perform some miracle and take away Ken’s AD.  Obviously, this was another of life’s storms we had to bear.   Instead I prayed for courage and strength to see us through this awful thing.   There were, and are, hectic days which pass in a blur with nothing accomplished except caring for him: getting him shaved, showered, dressed and fed.  Days when I walk on egg shells to avoid his outbursts, or giving in to my own anger and frustration, spewing out hurtful remarks and despicable words, which prior to AD would have never crossed my lips; afterward glancing toward Heaven and whispering, “I’m sorry, Father, forgive me.” 

And then there are days when the first line and title of a favorite hymn runs through my mind giving me councel, “Ere You Left Your Room This Morning, Did You Think To Pray?”  So I strive to rekindle the habit and, truly, it helps.  Does it remove the storm?  Of course not.  But on those days when I pray with real intent, having faith in Christ, I am calmer, more patient, more appreciative of those rare moments when he is Ken and he knows me and loves me.  And I pray for him, that he might have some peace in his tortured mind, and I am reminded of the last line of the hymn, “So when life gets dark and dreary, don’t forget to pray.”

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During those first romantic years of early marriage I rarely thought of the state of matrimony as a partnership.  How unromantic was that?  A partnership sounded like some kind of business deal and I thought of “us” as being more than that.   He was the husband and I was the wife.  Husband and wife were the important words as were the titles of Mr. and Mrs. on the outside of some of our addressed mail.  Before we married I remember how exciting  it was to sit and doodle during spare moments; practicing the best way I was going to write my new name.  Flaring the M for the Mrs. part, I then curved the K for Kenneth and looped the R in as many scrolling ways as could be imagained for Romick.  I was going to become Mrs. Kenneth Romick as my doodle paper would testify, and it wasn’t going to be some kind of business arrangement.

The “he” part of our marriage was a G.I. student and I was the working wife, but when we were home, it was togetherness.  We moved into our first San Francisco flat where we cleaned and painted the shabby place — together.   We went everywhere together; we played together; we shopped together, we cooked and ate together — then he studied and I cleaned up: not together. 

 So, perhaps everything wasn’t meant to be together — but still we weren’t ready for a business partnership. Partnership in marriage, we believed, was like what our parents had: tired and worn, yet pulling together for a common goal; not always at their best with one another, but having it not matter; spending a whole evening together exchanging only a few words and that didn’t matter either.  Yes, they were comfortable partners and Biblically speaking, they were  — more or less — equally yoked:  a team.   A team, we noticed, where one member sometimes pulled harder than the other, and then at other times it was the opposite member who pulled the load.

I always believed that our “Honeymoon” lasted longer than most couples we knew, even with the birth of our children, we had our times of romance.  So, it would be difficult to say when during these past five-plus decades of togetherness we became a partnership, but partnership we became — without sacrificing the “us.”   However, I am certain that the younger generation has long-since viewed our marriage as old and tired and as comfortable as Ken and I once viewed the marriages of our parents.  What I have found most interesting during  these years of coping with Alzheimer’s is how much I miss the partnership. 

I had planned a trip to Washington state  in 2006 to attend the 50th anniversary celebration for long-time friends, Julie and Bob.  The couple planned to renew their vows with me as the matron of honor, which I had been, and the best man planned to be in attendance as well.   I explained to Julie that we were planning on coming, but I had to make the decision on a daily basis, depending on Ken’s condition.  Yet, I couldn’t wait until the last minute to make reservations and route our trip.  I pulled up the Internet, punched in motels for our stops and read what was offered.  Several looked good.  I asked Ken to sit with me and help decide where we would stay.  Together we had planned all of our previous vacations.  But with AD he had no idea what I was talking about, especially viewing the screen and listening to the information I read to him; it all meant nothing.  I wanted his input — a discussion, to bounce ideas back and forth between one another, to hear what he liked or didn’t like — to help me choose.   He was incapable of helping and in the end, it didn’t matter.  The chosen motel was fine and the trip went well, but I missed my partner — my husband — my team member.

The motel decision wasn’t all that important, but it was an example of what was to come.  The responsibility of “us” is all mine; we are no longer equally yoked, much less a team and our partnership is in name only.  Our rolls have changed.  I am now the caregiver and he is the patient, and I care for him in much the same way as I would care for a child — a very difficult child — who at times is stubborn, explosive and unappreciative.  Although, every so often he is lucid enough to call me sweetheart.  If I’m fast and ask him for a hug, he complies, wrapping his arms around me as in days of old, and for a few moments we are “us” and we are also partners.

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