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ALZHEIMER’S TIME TRAVEL – SOMEWHERE IN TIME

movie poster Somewhere In Time

A romantic time travel movie has this caregiver reminiscing the similarities with Alzheimer’s.

REMEMBERING AN OLD FAVORITE TIME TRAVEL MOVIE

 January 17, 2014 —  If you saw the movie I doubt you’ll ever forget the intensity of their love.   Christopher Reeves and Jane Seymour together in a time travel romantic story that became a cult film classic.  No, neither of the characters had Alzheimer’s, but their experience is a mind-blowing concept.

There he was, handsome and suave, even without his Superman costume, but instead of being Clark Kent, Reeves’ protrayed a young man named Richard Collins who was celebrating his first writing effort at the college premier of his successful play.   Moving past his friends is an old woman who says simply, “Come back to me,” and at the same time gives him an old pocket watch which she had given him during another time and at another place. Continue reading

Originally posted 2014-01-19 04:31:24.

ALZHEIMER’S AND A MELTDOWN

baby possum

Even a tiny possum can cause a big meltdown.

The wicked witch in the Wizard of Oz had a meltdown.  One splash of water and she was gone like my grandmother’s spit on a hot iron. Now that’s what I call a meltdown.  No, I haven’t had anything like that and I don’t mean to poke fun at an extremely serious medical condition. Perhaps I’ve wanted to collapse a few times and let them take me away. If only there had been more time, and I needed the respite.  But the days are always lacking in enough hours to get the necessities done and over.  Having a meltdown is not nor has it ever been on my to-do list. Continue reading

Originally posted 2013-10-20 04:55:06.

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

wedding couple hands

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

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

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

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

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

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

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

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

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

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

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

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

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

SOMEWHERE BETWEEN GRIEF, THERAPY AND HEALING

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.”

Originally posted 2011-03-12 23:18:49.

LETTING IT GO

If we could look back on all of the people who have helped make up our life’s tapestry what would it look like?  Colorful, I’m sure — often brilliant in its scope and varied in texture.   Supposing all of those people were represented by a different color — not a racial thing — colors from the Crayola box and no one can choose the same color.  Now look to see how those colors come and go — in and out of our tapestry —  each entry bringing new vibrancy, contrast and dimension.   At times,  though, our people must pack up their color and move away, but there are times when the color is gone because of a misunderstanding, lack of compromise, anger, grievance or whatever?   The reasons friends and often family members leave our lives isn’t important.  It’s what we do about it that counts.  Do we hang on to the anger/frustration/hurt or do we let it go, and in letting it go is the loom of life left open for more weaving with those colors later on, or it is closed?

On that tapestry there is a major section where there are two dominating colors:  him and her — male and female — husband and wife.  There are times when those colors are bright and other times when they appear dull.  While it is natural to not always agree — and that’s all right — the colors can be dimmed even more over little neglects, hurts, offenses or lack of appreciation just to name a few of the myriad of complaints that are a part of two people living together.   Take note, however, this isn’t about the serious crimes in relationships and marriages which might bring about breaking up or divorce.  It’s about the little irritating (and sometimes not so little) things and about letting them go.  I suppose this is all about forgiveness.

In the beginning of our marriage I was, admittedly, a pouter.  And I was very good at it.  Whenever there was a slight (and believe me I can hardly recall what most of them were) I would pout for a while — perhaps even a day or two.   Ken agonized while I pouted and finally he would apologize.  That’s what I was after:  “I’m sorry.”  Not only did his words say what was important so did his big, sad, hazel eyes.  An apology was always followed by immediate forgiveness on my part.   We never exchanged harsh words or names, nor did we yell at one another.  I pouted and he apologized:  our m.o. for years and years.

One evening at our home after a neighbor secretly spiked our already delicious punch, Ken got a bit tipsy (along with several other unsuspecting guests).  Recognizing his carefree state of being he announced to everyone in the room that I was going to be really angry with him.  Then he added,  “Well, at least this time I’ll know what I did wrong.  I’ve been apologizing for the last 15 years and I never knew for what.”   After that declaration I took note.   When he offended me I told him immediately why I was angry.  Total communication.  I was mad and he knew why.  Furthermore, his apology didn’t come as quickly as they had in the past because he now had to recognize what he had done and make amends.  Pouting — perhaps.  Apology — probably.  Letting it go — forgiving — eventually.

Alzheimer’s has taught me differently — just let it go — now.   When you live on a roller coaster, emotions carry you to highs and lows you never thought possible.  At times I have seethed with frustration and often feel anger to a point where I have to leave the room over things my stricken husband says or does.  Then a few minutes or hours later when he has forgotten he’ll seek me out looking so bewildered and with sadness in his eyes will ask, “Did I do something to make you upset?”    I know he can’t help not remembering, he can’t help being arrogant at times, he can’t help lashing out at me in his own frustration.  Then I hear his words as he recognizes me once again and he says, “If I have upset you, I’m sorry.”  I am swept with a feeling of calm, and to my own surprise I can truthfully answer, “No.  You didn’t do anything wrong.  Everything is okay.”  I have learned to let it go even when there can be no apology.

As I review my life’s tapestry there are a few earlier threads which have clashed with my present color scheme and in retrospect I don’t miss their shades and hues.  My tapestry is beautiful without them.   The past is gone and all is forgiven.  It’s just a matter of letting go and remembering the advice of a dear friend who said, “True forgiveness is remembering without pain.”

Originally posted 2009-05-04 02:09:34.

GAMES WE PLAY

“Where’s the boss?” he asks.  With that question I know he has become Mr. Hyde, who is married, but not to me.  “She had to go to work,” I tell him.  “You know she has a very important job at the mall and won’t be home until late.  Furthermore, she’s always on call, that’s why she just seems to disappear and doesn’t have time to say goodbye.”

“Why do you do that?” asked my friend, Jayne,” who is visiting and wonders about this fictional game we play.

“Because it’s easier and this way I don’t have to argue with him,” I answer.  Then I went on to explain to her that at first I would try to convince him I was his wife — “the boss” — the nickname he has given me for more years than I can count.  “No you’re not,” he would insist, looking at me like it was my mind that was gone.  “I am your wife.  We are married.” I used to claim.   “Come into the bedroom and look at our anniversary photo above the dresser.”  He followed, looked at the photo, then at me and said,  “That’s not you!  You don’t hold a candle to her.  Why don’t you leave.”  Other times I would show him our marriage license and my driver’s license.  Anything to convince him that I was, indeed, his wife.  He hid the marriage license and tried to confiscate my driver’s license.  No matter what I did or said when he was/is Mr. Hyde he just won’t believe that I am his wife.

Consequently, I have become the “hired girl.”  (He sees me as someone very young, which can’t be all bad, and believes I live with my parents and am still in school.)  Good enough for me.  I tell him that caring for him is my job and I get paid by his wife.  I leave when she comes home.  So I tell Jayne, “I play the part because it keeps the peace.”

Originally posted 2009-01-31 04:56:38.

OTHER MEN IN MY LIFE

December 21, 2008 — When Ken and I married we were everything to one another: husband and wife, soul mates, lovers and best friends.  At first we had eyes for no others and space for only the two of us. Eventually the oneness and passion took its proper place in life and we became, once again, part of the real world. 

We were already children of our parents and a sister and brother to our siblings.  We had aunts, uncles, cousins and numerous friendships.  As we grew into the big, roomy shoes of married adults we took on new titles becoming not only what we were already, but more in being the kind of people we had chosen to be:  a man and a woman who were quite capable of family devotion, preparing for earnest parenthood, worthy neighbors, and good friends to many.  We also became as the scriptures tell us a strong, “equally yoked” team.  Well, as equally yoked as one can be married to the world’s number one procrastinator.  However, we were still everything to each other as we had been in the beginning.  Everything, that is, until more than a half century later when the demon Alzheimer’s introduced two new men into my life; both of whom I could readily do without.

This afternoon was filled with phone calls and company, which is always good for Ken – and me.  Having been a social person all of his life, Ken is happy to have someone to talk with even if his brain doesn’t recognize them.  Furthermore, he does remember how to “fake” it.  A young visitor might ask, “Hi, Grandpa. Remember me?” Ken will smile and answer, “Can’t recall the name, but I recognize the face.”  He doesn’t, but the encounter gets his brain working and makes a small – or tall — guest happy.

THREE’S COMPANY

Having visitors makes me happy as well because that stimulation seems to keep away his two other personalities.  My husband can become any one of three different people – or I suppose it’s better to say three different personalities, one of whom is the man I married with a diseased mind.  The various moods or personality changes that can appear at any time is part of Alzheimer’s.  I have named the first intruder Mr. Hyde.  While this personality can be rude, disagreeable, mean, and a bit combative, he is not violent and murderous as was the character created in the turn-of-the-century book Dr. Jekyl and Mr. Hyde.  Nevertheless, because he can be unpredictable, I tagged him Mr. Hyde as a point of identification, and the name seemed to fit this stranger with whom I am often pitted.

GETTING TO KNOW THEM

Mr. Hyde admits to being married, but not to me, and has a family which is never discussed.  He will often look at me and ask, “Where is my wife?” or “Where’s the boss?”  The boss, of course, is me although he sees only a stranger, someone very young who is still going to school and needs to call her parents when it’s time to go home.  That concern is part of Ken’s deep-rooted personality as he worries whenever he knows a woman is out alone in the dark of night.

The second personality is Buddy,who is about 12.  Buddy owns our home, which he claims as the house where he was born, having received it as a gift from his father and mother who still live here, and are presently away.  Buddy tells me he is not married, has no children and no additional family other than his sister Loretta who is also away.  As Buddy, he can become very strong and quick in movement. He can easily become combative when confronted with anything, especially his rights as a property owner.  Often he sees me as an intrusive stranger who has no right to be here and wants me gone from the house.  The boy personality is very protective of his home. It’s almost as though he has been left in charge while his parents are away, and takes his assignment very seriously. 

Mr. Hyde was the first to arrive.Both of these newcomers  can make things very unpleasant with their presence. Mr. Hyde and Buddy love to argue, even though most of the time they remain politely pleasant unless they are provoked which can be real or imagined.  However, it doesn’t take much to set them off.  I dislike the two intensely, all though I believe they cling to Ken’s basic upbringing about respecting women.  I can just hear his mother say, “Buddy, you must always remember this:  You are never, never to hit a woman – not for any reason!”    

As strong as these personalities are neither of them seems to appear when there is company in the house, and that’s a good thing.  Meanwhile, and though I detest both I am prepared for Mr. Hyde and Buddy to be the other men in my life for as long as they decide to stay.  

 

 

 

Originally posted 2008-12-22 02:56:18.

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