Marriage

“TAKE ME HOME”

How many times during the length of a marriage does one of the partners nudge the other whispering, “Let’s go home.”  It doesn’t matter how great the party, how good the movie, how grand the evening or even how perfect the vacation, there comes a point when it’s time to go home. 

Children aren’t much different either; from a skinned knee on the playground to puppy love’s first rejection, the yearning is the same, “I wanna go home.”  The youthful statement is often accompanied by sobs, pleadings when bored or whining when the pleadings aren’t heard. 

Poets write verse about home, lyricists link home to a melody, our service people long for it and commuters drive for hours to get there.  Back home is where mom and dad live, a new home is what everyone wants, and home is where we are when the door closes.  A sanctuary from the world, our private abode; a place to hang our hats, kick off our shoes and relax in front of a warm fire and hopefully, a place where love is.

But what happens when you are home and you don’t remember it being your home?   Then the lament changes to, “When are you going to take me home?”  Each day, during a certain mood, Ken tells me that he wants to go home, becoming very anxious about getting there.  No matter how often I try to reassure him, “This is your home, Ken,” he becomes less and less likely to recognize what was once so familiar.   “Look around and you might remember the family room you built many years ago, and come into the living room,” I suggest, guiding him along the way.  “See your father’s Marine photo on the wall, and your parents’ wedding picture, and right here is the family portrait, the four of you:  your mom and dad and your sister, Loretta.  And look at you at 15, aren’t you handsome?”  

 Up until yesterday, the tour seemed to bring him back into, at least, some reality of being home.  However, yesterday he looked at his parents’ photos, glared at me and asked in an accusing manner, “Who gave you permission to hang my family pictures on this wall?”  At that point, fearing he would rip them down, I changed the subject and eased him into another room.  Forgetting the photographs, he still wanted me to take him home.

A few years ago, we attended the funeral of a good friend whose brain had been ravaged by Alzheimer’s very rapidly.  For their privacy, I’ll call them Luke and Paula.  Luke was a successful orthodontist at the peak of his career, being struck down at a comparatively young age.  Following diagnosis, he immediately sold his practice, and the couple moved mid-state to be near their son and his family.   While Paula battled Luke’s disease, I battled Ken’s so we didn’t keep in touch.  Seeing her again,  I gave her a hug and despite her brave front, there were tears when she said, “He’s home, he’s finally home,” explaining how often he pleaded for her to take him home.   Her reference, of course, was the Heavenly home from whence we all came.   However, I couldn’t help but wonder if he missed their place here, in the Bay Area, having been in their new home for such a short time it made sense that the old house held more memory.

I also believed Ken wouldn’t go through the “wanting to go home” phase because we have lived in this same house for more than a half century.  I was wrong.  As he regresses, he becomes younger and younger, often asking if I have seen his mother.  When he does, I know he has become the personality I have named “Buddy,” his parents’ nick name for him.  Undoubtedly, I thought, the home he  has in mind is where he grew up in Berkeley, or is it?  Even as his father, Nicholas, descended deep into Alzheimer’s he would beg to go home.  Is it possible that Ken isn’t asking to return to his childhood home on 10th Street after all?  Perhaps Paula is right.  In their tormented minds, were — are — they calling out to Him to take them home?    Could their spirit be remembering what Wordsworth suggested?

“Our birth is but a sleep and a forgetting:

The soul that rises with us, our life’s Star,

Hath had elsewhere its setting,

And cometh from afar:

Not in entire forgetfulness,

And not in utter nakedness,

But trailing clouds of glory do we come

From God, who is our home.”

Originally posted 2009-09-06 07:10:05.

THE BEST THING

It was Saturday night and I had hoped to have Ken settled in so I could go to bed early.  I felt unusually tired and he had been beastly all day: very agitated, very angry, very arrogant and argumentative.  He is on medication to cut down on the agitation and it usually works, but not that night.  Suggested dosage is one half pill in the morning and another toward evening.    Nothing seemed to make him happy or subdued, so instead of waiting until evening I gave him the other half in the late afternoon and another half pill (with the doctor’s permission) around 8:00 p.m.  Instead of him becoming calm he became more hyper and more angry.  Even the Tylenol PM at 10:00 o’clock was ineffective as he wandered from room to room ranting and raving and ordering me to leave.

Exasperated beyond description I went into the office and opened the computer thinking I would work for an hour or so.  When he becomes very unreasonable it’s easier to just lock myself in and him out.   I pay no attention to his demands to open the door and eventually he settles down in front of the TV.  Usually, he will sit for a while, get drowsy and I can talk him into getting ready for bed.

After an hour I peeked around the corner and found him ransacking the refrigerator.  “What are you doing?”  I asked.  “I’m hungry,” he replied.   “But we had dinner,” I insisted.  “Maybe you had dinner,” he growled, “but I didn’t.  I’m hungry.”  Perhaps some food would subdue him, I thought, so I made him a peanut butter and jelly sandwich.  He ate half and told me that’s all he wanted.  He went back to sitting in front of the TV.  It was midnight.  “Please go to bed,” I begged.  “No,” he answered.  “I’m going to watch TV all night.” 

Exhausted and sleep deprived I went back into the office.  I couldn’t believe how wired he was — and why?  I returned to the computer.  The letters I typed danced up and down on the monitor and when I tried to proofread I fell asleep at every other line.  How I ached to go to bed and the more sleep deprived I became the more my anger grew.  I raged into the night, cursing that I had ever met him — that we had married — and in my frustration I imagined a simple, uncomplicated life without this deranged man — any man.  Why hadn’t I remained single, opting for a career in New York instead of marriage.  At that moment I saw myself sleeping in the bedroom of a lovely apartment  high above the city.  The room was silent and I was alone — how glorious — then my reverie vanished.  I crossed my arms on the desktop, dropped my head and cried.

It isn’t as though I can’t leave him alone.  At times I do, but only for a while and usually he is sleeping or happily occupied reading junk mail when I run to the bank or do other small errands.  I would be fearful to fall asleep with him in his present frenzied condition.  Even if I pulled the 220 fuse controlling the stove, I would not feel comfortable.   In addition to ransacking the pantry and the refrigerator, he leaves water running and lights on everywhere; and he could hurt himself.   On one of his stubborn nights I found him in the living room on the floor.   Apparently he had fallen getting out of a low chair.   Had I been asleep he would have been there all night. 

Finally, the house seemed quiet as I ventured out to see what he was doing.   Still watching TV, he appeared to be more relaxed.   Softly I asked, “Let’s go to bed.”  He said, “Okay.”  It was 3:00 a.m.

I slept fitfully and awoke at 10:00, staggered into the kitchen/family room and switched on the television.  Through my burning eyes the Palace of Fine Arts in San Francisco appeared on the screen.   I first thought it to be a travelogue, but the scene changed showing two men in a row-boat: one young and the other older.  The younger man spoke briefly; something about not being sure of marriage.  I decided it must be an old movie.  Still recovering from the previous night, I plopped myself  into a chair.  If I watched I didn’t have to do anything else — at least not for a while.  The camera focused to the older man — a Catholic priest — who answered the younger man’s question with reference to marriage, “It’s the best thing I ever did.”  Continuing, he explained that he had been married to a wonderful woman for 26 years.  When she died he entered the priesthood.

I watched this rather silly movie to its end where thousands of young women scurried to the church in response to an ad for marriage to this very wealthy, but reluctant swain.   Following a series of wild chases up and down the hills of San Francisco, he eagerly married his true love with all of the would-be brides as witnesses.   The movie will be easily forgotten, but I’ll remember the most thought-provoking line the writer wrote:  “It’s the best thing I ever did.” 

I remembered the night before; my anger and cursing my own marriage of more than a half century.  It has been a good marriage — not a perfect marriage  — not a perfect man or a perfect woman.  I don’t believe there is that kind of perfection, at least not in this world.   However, I will give my marriage a good solid B — better than average.  Looking back on our youthful beginning I wonder if I thought of “in sickness and in health” as meaning anything more than a cold or the flu.  How naive that would have been, but more likely I don’t believe either of us thought about illness.  After all, isn’t youth invincible?   Healthy young people on the brink of a new life don’t look very far down the road.   And if they did glimpse the ending would it alter their decision to go forward? 

Our life together has brought us our share of adversity and has now thrust upon us this illness of unmeasurable grief and sorrow, but it has also showered us with years of happiness, joy and the blessings of an ever-expanding family.  Our five remarkable children, now showing signs of greying hair and middle-age spread, have bestowed upon us grandchildren and they in turn have given us great-grandchildren, and our posterity will go forth.  Thinking of my imagined single life I had to ask “me” if that’s what I really would have wanted.  Had I chosen not to marry what would that other life be like for me today?  Even without looking down the untaken road I would have to conclude that life without my family, without Ken, would be unbearably lonely and colorless. 

In the bright, warm light of Sunday morning I believe I received something to ponder; perhaps even a Heavenly message through a silly old movie and from an actor portraying a Catholic priest reminding me that, indeed, marriage is the best thing I ever did.

Originally posted 2009-05-15 06:56:12.

HAPPY ANNIVERSARY

It’s January 21, 2009 which is Ken’s and my wedding anniversary.  During the day he took turns being any one of his three personalities — as usual. Some time around 4:00 he seemed to be Ken so I asked if he would like to go for dinner and, perhaps, a movie to celebrate our anniversary.  He looked at me with a questioning smile then asked,  “When did that happen?”  “A long time ago,” I answered, but mention food and he is ready to go.

We went to a small, intimate restaurant owned by our daughter, Julie, which during these economic times is struggling to stay open.  We sat in what has become my favorite corner and ordered dinner — a small dinner.  He becomes agitated when he has to wait very long for anything.  Usually we have been going to some fast food places where he gets instant food.  Even before our meal arrived he became Mr. Hyde and wanted to hurry because he had to get home for his wife who should be home from work.  I rushed as much as I could, considering it was hot soup, telling him we would leave as soon as I finished my dinner.  He began pacing around the restaurant and I could see that he was becoming agitated.  Rather than have him bother the other customers, I decided it best to leave.   Asking for the check our server said it had been taken care of.  Leaving a tip on the table I picked up my coat and purse and peeked into the kitchen saying,  “Thanks for dinner, Julie.”   “Happy anniversary,” she sighed, and we left.

Son-in-law Tim caught us as we were driving out of the parking lot.  “I thought you were going to hang for a little while,” he said.  “No,” I replied.  “Ken has to get home to find his wife.  I came with my husband, but shortly after we arrived the evening turned into a real bummer of a blind date.”   Try a little humor, I thought, to cover the pain.  We said our good evenings and I drove home.  I cried all the way.  Ken didn’t notice.

Foolish woman, I thought to myself.  I knew better.  What did I expect?  Perhaps a miracle — a lucid evening — when he would remember who we were and our life together.  It didn’t happen.  Of course not.  After five years, his Alzheimer’s is well advanced.   On his blog, Dr. David, mentioned “a rotting mind.”   I have called it the same thing and it might as well be as there are hardly any reference points remaining; just a mass of tangles and plaque.   It’s almost as if my husband has died and I’m taking care of  what’s left.   However, I know  I am fortunate that I can still care for him at home.  I just won’t plan — or expect — any romantic evenings with my husband.  But every so often, when the sun is bright,  he will remember just a little and ask, “You know what?”  “What?” I answer.  “I love you.”  It’s not an evening out, nor will it fill the whole day, but for a moment I have my husband back.

Originally posted 2009-01-30 06:14:02.

CONTROL — WHO HAS IT?

January 15, 2009 — Anyone who cares for an Alzheimer’s patient knows with certainty that the disease is the “boss.”  We don’t control Alzheimer’s, Alzheimer’s strives to control us.  It’s always keep the peace, tell the patient what he or she wants to hear, second-guess everything you are thinking of saying, don’t argue, don’t do that, don’t disrupt and above all, don’t have a life.  That’s the hard part:  allowing this awful disease to control and take away not only the patient’s life, but the caregiving spouse’s life right along with the victim.  But guess what, that screeching sound you hear is me dragging my heels.

So much of the time I’ve found myself walking around on tippy toes trying not to break the eggs.  Before AD, and in a good marriage — which I was fortunate to have — we didn’t have to view the world through one another’s eyes.  I often said that to Ken when we had a disagreement and he felt his way was the only way.  “Thank you, Ken, for your opinion, but I don’t have to see the world through your eyes.”  Nor did I expect him to see the world through mine.  Actually, we were pretty much in agreement on most things, but there were times when we weren’t.  And it was all right to agree to disagree.

Once Alzheimer’s entered into our lives in full force — and it was a gradual thing — I somehow put my life on hold, not really knowing how not to.   I can’t say what year it was when the eggs became a permanent fixture underfoot, but they are there and I live my life accordingly — which I find  extremely frustrating.  If the room is too warm, we turn off the heat.  If he wants the door open, it stays open — even in the winter with rain coming down and  the north wind blowing.  He asks me a question, then gets angry with my answer or direction.  I used to say, “If you don’t want my help, don’t ask for it.”  That is long past, now he just views whatever I say as “telling him what to do.”  And the fault I dislike most of all is their need — any of the three men in my life —  to argue.

Ken always liked to banter with people (and me) and would take the opposite side of a discussion just for the fun of it.  He might have made a good debater, but was never sufficiently informed to support the side he chose.  For him it didn’t matter, he just liked to push people’s buttons in a teasing way, and we all knew it was just “in fun.”  But that “need,”  if one can call it a need,  is still there, but without the fun, and when he gets into a mood it can cause us both some miserable moments.

For example:  after dinner I went to pick up the plates and he said he would wash them.  “That’s okay,” I replied, “I’ll put them in the dishwasher.  That’s why we have a dishwasher, it cleans the dishes.” “Sometimes,” he snapped.  Then he gets a know-it-all expression on his face and I realize he means to argue this to the end.  In the past, I tried to reason with him.  It takes a while for a spouse to accept the fact that he or she is no longer dealing with the person they married.  So now I just walk away telling him, “I’m not going to argue with you.”

With that as a final declaration I leave him standing, escape into the office and lock the door.   Or sometimes, before he gets too argumentative I will wait a moment or two until he turns away then I disappear — to the same destination.   It might take a few minutes before he  thinks he has found me behind the locked door.   He knocks firmly and commands, “Unlock this door.”  I don’t answer and I don’t argue.  I can ignore him and I smile because I’m in control.  It’s usually just a little while, but for that moment I can do exactly what I please  Alzheimer’s has Ken in its grips, but for that small window of time, his disease doesn’t control me.

Originally posted 2009-01-19 08:14:36.

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.

EVEN 33 HOURS CAN BE A VACATION

My grand daughter Katie and her new husband Brian

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 caregivers and the different things we can do, places to go and the importance of friends not only to keep us as a viable part of society, but to keep us sane as well.  Undoubtedly, all of those suggestions seem to work for the day-to-day functions of our busy and often stressful lives. Continue reading

Originally posted 2012-07-20 21:21:59.

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.

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