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A Free Chapter From Ann’s Forthcoming Book: Journey Into the Fog

I am the caregiver for my husband, Ken, and have been for the past eight years.  When the disease really took hold Ken developed two other personalities.  I named the two Mr. Hyde (who is married but not to me) and Buddy who is somewhere around 12 years old. I am, at times, Carla, a stranger to Ken, but he accepts me as his caregiver/housekeeper who is there for him when his wife goes to “work” which is whenever he looks at me and asks, “Where’s my wife?”

CHAPTER: Carla

During the fall and winter months when the darkness comes early Mr. Hyde closes the mini blinds on the two sides and back windows of our house by late afternoon, which makes me feel as if I’m living in a tomb.  “Don’t touch any of the shades,” he orders.  “We have people living behind us shining bright lights at the house watching what we’re doing.”  He then paces from room to room peering through the slats of the window coverings looking for the intrusive spot lights.

Constantly on the move, he “checks” for intruders as well, opening and closing all of the interior doors.  Then he does the same with the exterior doors rattling the locks until I’m certain he’ll rip the knobs from their mountings.  Temporarily satisfied he might watch television or decide to repeat the security action several more times.  Often the routine can last for hours.   If I’m able to coax him to sit down for 20 minutes or more, watching a quiet program on TV, he’ll sometimes relax and go to bed.

Occasionally, he sits alone in the living room deliberately leaving all the lights off.  With only a glow filtering through the sheer window curtains, Ken peers into the night watching for suspicious movements and questioning what might lurk behind every shadow.  Spooky and mysterious as the scene might be, there are times when his actions, or lack thereof, make some kind of sense to him; and to me if I pause in an effort to journey with him into his delusion.

“What are you doing?”

“I’m waiting.”

“For what?”

“For them to get here.”

“Who?”

“The young people who are coming from the mountains.  Their parents will be picking them up here.”

“I’m not expecting company, and I doubt if anyone is coming.”

“You don’t know that. They will be arriving soon and some might have to sleep at our house if no one comes for them.”

Young people?  Parents?  I thought for a minute before plunging into further discussion.  I was learning not to contradict my Alzheimer’s patient, even if I was only trying to help.  Waiting, choosing the right words could, at times, calm his annoyance.

Of course I remembered, his mind must be back during his Scout Master days when he and his troop of Boy Scouts backpacked the mountains accomplishing several “50 Mile” treks over a period of more than a half dozen years.

“I’m sorry.  I forgot to tell you.  They called to say they’re not coming.”

“They called?”

“Yes, on my cell phone.  They’ll be home tomorrow and their parents will pick them up at the church so you don’t have to worry anymore.  Let’s go to bed.”

Nothing works all of the time, but distraction, changing the subject, even joining the delusion, and, of course, patience which is the best solution in convincing the diseased mind.  Unfortunately, when all else fails, there aren’t a lot of options.  Living with Alzheimer’s isn’t like hooking up a new TV where specific instructions make everything clear.  The medical community is often as baffled as the caregivers, but there are other resources: books, blogs and support groups which can offer suggestions, advice and help, otherwise I just muddle through.  Sometimes in my frustration I do a lot of pillow punching, bathroom screaming and sobbing — more sobbing than screaming — deep breathing, taking  quick walks and biting my tongue when I would rather speak my mind. Nevertheless, I do strive to follow my own set, but flexible pattern of procedures which has worked for me.

Observing Ken and his many moods has become a great teaching tool.  I am becoming more acutely aware of personality changes which can happen in a blink of an eye, in the middle of a sentence, or during a pleasant drive.  In the car when Ken has taken leave I recognize the transition immediately.  Mr. Hyde will begin giving me directions for getting to “his” home.  Odd that he doesn’t remember me, but he remembers the route to his house. Without missing a turn he is right on target.  Once the car is in the driveway, he quickly unhooks his seat belt, opens the car door and leaps out slamming the door behind him. Dashing up the steps my eager husband anxiously rings the bell, and almost praying pleads, “Please, let her be home.”  Even after I unlock the door he pushes past me calling, “Hello, anyone here?”  I let him search for a while, and then tell him that his wife called on my cell phone and she will be home from work as soon as possible.  Reassured, he may turn his attention elsewhere, or he might tell me to get out of his house.

Mood swings and personality changes seem to be affected not only by the clock, but by the amount of light in the day, although hunger and other physical promptings can be as strong.  Just when I’m thinking about starting dinner Mr. Hyde storms into the kitchen.  First he rummages through the refrigerator complaining about it being empty, and then apologizes again and again because there is no food in the house.  No matter what I’m doing I stop and set his mind to rest quietly convincing him that I have everything necessary and his dinner will be ready at 6:30.  (If he eats too early he insists he has missed dinner and demands to eat again before going to bed.)

One evening as we sat having our meal, Mr. Hyde seemed to be in a pleasant mood.  He asked if I needed a ride home or if I had my own car?  I told him someone would pick me up later.  (Occasionally, Mr. Hyde showed the same concern and worry as Ken about women being out alone after dark.)   With food as his main focus we usually ate in silence, but that night he seemed to be interested in me as a person.

“By the way, what’s your name?”

I had been thinking about our niece and absently answered, “Carla.”

“What’s your last name?”

Surprised at his interest I replied without much thought, “Smith.”

“That’s what they all say,” he answered, annoyed at my seeming evasiveness.

I laughed that he had responded so quickly to a pick-up line rejection.  “I’m sorry,” I added, “I‘m Carla Carlson.”

“Do your parents know where you are Carla?”

“My parents are gone.”

“I’m sorry to hear that.  Mine are too.   Have you finished your schooling?”

“Yes.  This is my job.  I’m a caregiver, housekeeper and cook.  I work for your wife.”

“Where is my wife, anyway?”

“At work; you know she has a very important job at the mall.  She’s always on call and comes and goes at different hours.  When she’s gone, I’m here because she needs someone to cook for you and she doesn’t want you to be lonely.”

So began my alter ego and the fabulous position held by Mr. Hyde’s wife.  As the husband of my employer, he seemed to take comfort in knowing that this stranger “Carla”would leave when his wife came home.  Because his wife’s pseudo “career” was of prime importance at the mall, her arrival time home could be anytime that fit into the continuing charade usually calculated near 11:00 p.m. or earlier depending on his mood swings.  To further send him on his way to peaceful tranquility and bed I gave him two Tylenol PM passed off with some night-time vitamins between 8:30 and 9:00.  If he didn’t stress out about something he became very relaxed.  In his drowsy state he often recognized me as his wife and happily went off to bed.

However, some nights in our empty house Ken (or Mr. Hyde) imagines that it’s filled with people –- houseguests – or believes we’re babysitting one or two of the grandchildren.

“Shhhhh,” lower your voice or you’ll wake them.

“Wake who.”

“We have people sleeping in the bedrooms.”

“Show me.”

Leading me down the hall, we looked into all of the bedrooms.  “I guess someone came for them.”

“Yes,” I agreed.  “Their parents picked them up a while back.  Everyone is gone.”

As well acquainted as I was becoming with my triple-personality husband, nothing is ever certain.  If his paranoid pacing throughout the house overrides the Tylenol PM, he becomes more energized, often canceling the hoped-for drowsy effect.  When this happens I know I’m in for a long evening as he often becomes even more imbedded in one of his personalities.

One such evening came when Mr. Hyde did not become sleepy.   It was well past 11:00 and he worried that his wife wasn’t home and was determined to wait up until she arrived.   As Carla, I tried coaxing him to just go to bed promising that she would be home shortly.  “I’m too worried to sleep,” he stated.  “She should have been home a long time ago.”  Returning to his “station” in the darkened living room, he settled down in a swivel chair turning it so he could watch the street.

Exhausted, I finished up a few chores and approached him again.  He wasn’t irritated by Carla’s presence which was unusual, but he did insist she leave him alone in his concerned melancholy to sit and wait for his wife.  Eventually, I went to bed.  Worried about him I rested, but couldn’t sleep.  Several times I arose in the dark to see if he was all right.  Silently, I peeked around the corner.   There he was just where I had left him – ever watchful — patiently waiting for the love of his life to come home.  In hindsight I should have called him from my cell allowing him to know, at least, that his wife was safe, but with each of my visits I was certain his mood would change. As his wife I could have convinced him to go to bed.  Somehow I just expected him to snap back into Ken and be tired enough to want some rest.

At 4:00 a.m. and desperate for sleep I tried one more time.  With only the moonlight shining through the curtains, I dropped to the floor in front of him.  Resting my arms on his knees I looked up into his eyes and quietly asked, “What can I do to convince you that I am your wife?”

His dear face was moist with desperate tears and he softly said, “You’re a good person and I know you mean well, but you are not the woman I married.   She’s out there in the dark all alone, and I don’t know where.  She couldn’t be at work.  It’s too late and she would have phoned if there was a delay.   Why hasn’t she called?   I’m torn apart inside and sick with worry wondering where she could be.   Please, just leave me alone.”

For a few moments I laid my head on his lap and cried with him.  I could only imagine the agony he was suffering believing his wife was missing with who-knows-what events continuously taking place in that tortured, tangled and sick mind.  After a few minutes I rose to my feet and left the room not saying a word.

Many times I had brought Ken back into our narrow slice of reality by going out one door and entering through another.  Still in my nightclothes and slippers I put on my coat, picked up my keys, and quietly left the house through the back door. Whispering a prayer of hope that my new approach would work I silently crept around the side of the house to the front porch.   Slipping my key into the lock while knocking gently at the door I pushed it open and stepped into the entry calling softly, “Hello.  Is anyone awake?  I’m home.  Sorry I’m so late.  I couldn’t call – all the lines were down — but I’m here now.”

I held my breath wondering if my theatrics were working, wondering if I could fabricate excuses fast enough to explain away all of his fears, all of his worries?  Would he be Ken and accept me as me?  Suddenly, he leaped from the chair and came forward to embrace and scold me at the same time.

He was angry, but so relieved — totally believing everything I said – listening to all of my reasons for not calling, not coming home when I should, and for not being considerate of him.  Gratitude filled my heart; we had broken through the barrier. I took all of the blame apologizing over and over adding that I was just too tired to utter another word.  “Is it all right if we talk about this in the morning?  For now, let’s just go to bed,” I pleaded.   “I’ll brush my teeth and be right in,” he replied.

“Finally,” I whispered to myself as I snuggled down into the welcoming blankets of our warm bed.  “Now we can sleep,” I said as he crawled in next to me.  Ken had already forgotten his hours of misery and despair.  “You know what?” he asked, moving closer.  “No.  What?”  I replied, knowing full well what he was about to say.  He still remembered his question and answer game.  “I love you, and I’m the luckiest man in the world to have married you.”

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2 Responses to A Free Chapter From Ann’s Forthcoming Book: Journey Into the Fog

  • PMHS says:

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    • aromick says:

      I had the web design done by Deborah Schultz from Precision Marketing Strategies. I have contacted her and she will be contacting you. So if you see her name you’ll know it isn’t spam. Thanks for tuning in and following my blog.

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