fear

WHAT’S YOUR EXCUSE?

Decorated Christmas Tree
Even something as simple as putting up the Christmas tree could be a great help for Alzhiemer’s caregivers.

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Originally posted 2011-12-10 05:37:08.

A NEEDLE IN THE EYE — AND COOPERATION

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

In the earlier stages of Ken’s Alzheimer’s we paid a visit to the eye doctor.  As we sat down Ken looked around the waiting room and casually said, “Funny, with my right eye I can see the wall and painting on one side and on the other side I see the door, but I can’t see anything in the middle.”  Good grief, I thought to myself, he doesn’t see the chair.   I was surprised to hear his “complaint,” and glad we were having his eyes checked, but I also thought it odd that he had never mentioned anything before about not seeing things in the middle.  It was if he had a hole in the center of one eye, which sounded like macular degeneration.Our eye doctor gave Ken’s eyes a thorough examination and seemed pleased to find his eyesight as good as it was, but sent us to another doctor who specialized in the treatment of macular degeneration.  “Yes,” said Dr. Specialist, “I do see that you are having some difficulty in the right eye.  If the degeneration isn’t too far advanced, we may be able to treat it.”

No matter what Ken’s temperament was when we left the house, his behavior was exceptional when we entered a doctor’s office.  He was like putty in their hands and at the very top in patience doing whatever the doctor asked of him.  I often wonder what would have happened if suddenly one of Ken’s other personalities emerged and socked the good doctor right in the mouth, but so far Ken was Ken with everyone in the medical field.  Dr. Specialist explained about the new treatment for degeneration and possibly Ken could be helped.  Continuing, the doctor said, “The treatment consists of shots directly into the eye…….”  I do believe the only thing I heard was “shot” and “eye.”   “A NEEDLE IN THE EYE?”  I am thinking is the man crazy? Ken’s AD plays mind-tag with his other personalities. Does the good doctor really believe all three will sit still and allow him to stick a needle in their eye?  With the steady hand of a knife thrower, intense concentration, and my husband not moving or blinking, the doctor completed the procedure followed by a bandage over the eye to be worn until the next morning.

In a nut shell, the follow-up examination proved that Ken’s degeneration was too advanced to continue further treatments.  How many times, because of his AD, would he have allowed such an assault to continue is unknown and incidental at this point?  However, the needle-in-the-eye experience brought to mind the importance of advance warning: being told exactly what was going to happen.  Imagine the disaster it would have created if the doctor had not told Ken, or any patient, what he planned on doing, but just said, “Hold very still, don’t move and don’t blink,” then went ahead and stuck a needle in his eye.

Clearly, we all like to know what’s coming next.  “I’m going to give you a few shots to numb the tooth,” says the dentist.  You don’t like it, but you prepare yourself because you know what’s going to happen, and your mind says it’s reasonable: hence – cooperation.

Youngsters like to know what’s coming as well. “See this dangling piece of flesh,” the doctor tells our 12-year-old who had shoved the heel of his hand through a closed window.  “I’m going to sew it back in place, but first I’ll give you a shot so you won’t feel a thing.” Mission accomplished with only a few jaw clenches.

Even for major surgery, someone tells you what’s about to happen.  The first step being,  “Count backwards from ten,” instructs the anesthesiologist, “and you’ll be asleep.”   “Ten, nine, eigh………….”  Cooperation and instant sleep is the reward for advance information.

“Okay Sweetie,” I can remember crooning to my 2-year-old.  “Mommy is going to put your socks on.  Now your shoes – hold still.  Okay, other foot.  Socks and shoes on – thank you.  What a good boy – or girl.”  Even when they were little they soon learned.  Not only did their vocabulary grow, but they began to understand about cooperation – until they tasted independence and learned to say, “Me do it,” but that’s another story.

I find myself thinking of our little ones very often as Ben and I – or Criz – work with Ken during the morning routine.  “Put your jeans on,” I hear myself purring, as the caregiver guides each foot into the pant leg.  “Socks on, very good – other foot (as if he were two) now your shoes – okay.  Good boy, stand up now.”  These are all simple words, simple statements, something for his mind to absorb, wrap around and to ponder (if the thought remains long enough) in his mixed up world.   “Are you ready for breakfast?” I ask.  “Of course,” he grumbles, “I haven’t had anything to eat all day.”

Another morning we begin with, “Today, we’re going to take a shower, Ken.”  “No thanks, I took one already.”  “Good, but we’re going to take another one because you really like showers.”  In addition to the words, it takes a little coaxing, a little direction, another reminder, “We’re going to take a shower,”  leading a bit, encouraging and pushing gently, still guiding and holding, into the stall where Ken sits on the waiting stool.  “Ahhhh,” he exclaims as Ben lets the warm water splash over him, “that feels so good.”  I’m tempted to say, “See.  I told you so,” but I don’t.   Instead I feel grateful for small successes.

Does giving instruction and preparatory information beforehand help and does it always work?  Sometimes, yes – sometimes – no.  There are times when I say, “Okay, we’re going to stand up.  One, two, three — stand uppppp.”  He stiffens like a rigid board and shouts, “No,” and then begins to jabber at the top of his voice, adding yelps and screams.  So we back off until everyone relaxes and calm prevails.  When he is quiet I get close to his ear (holding his head with my hand to avoid a head butt) and repeat what we are about to do in a calm, firm voice, “We’re going to stand up now and you can help because you have good, strong legs.  Okay, one, two, three – stand uppppp.”  Finally – cooperation — and up he comes with hardly any effort from me and Ben.  At times he will remark with a touch of sarcasm, “Why didn’t you just say so?”

Sometimes telling patients exactly what you are planning works, and sometimes it doesn’t.  With AD, there is no pat answer, but I believe the conversation helps and it’s worth a try.  Who knows exactly what goes on in the diseased mind?  I am certain that he finds some inner comfort in being told what we’re doing.  Perhaps it takes away some of the fear.  In any event, his caregivers and I will continue doing what we believe is best and what appears to bring about positive results.  Besides, when it does work it makes life more pleasant for all of us, and in the long run it is comparatively easy — nothing like it would be if we had to stick a needle in his eye.

Originally posted 2011-07-16 18:45:20.

BATTLES

We who care for those who have been attacked are at war with the Alzheimer’s demon 24/7 knowing full well that as we carry on the fight day after day, ultimately we will lose.   So we, the captains, have learned to select our battles.  To invest our time and energy in trivialities is a waste.  Does it matter if he decides on one pair of jeans over another, or that his socks don’t match, or that he wears his old running shoes with his suit to church, or that he has food stains from lunch down the front of his shirt and won’t change into a clean one?  No.  Not really.  I’m just grateful that he is willing to wear his suit and doesn’t insist on faded blue jeans and red suspenders to weddings ad funerals.  These are just some of the small disagreements which should never become battles — not even a skirmish.   However, the one issue which is always lying in wait for an all-out war is Ken’s personal hygiene and care for his private needs.  Actually, I have been very pleased throughout the onset of  the disease that he has been truly careful and conscientious in caring for himself.  I do find myself gently reminding him that “Today is shower day,” to which he complies without a word — until recently.

I believe the reason that personal cleanliness is so high on my list of fearful challenges is because of Ken’s father, Nick,  who was also an Alzheimer’s victim.  An early Leatherneck well before WWI, cleanliness among the Marines was an absolute must, which they accomplished with a daily, but meager, supply of fresh water.   Later in life, he was so aware of  possibly getting soiled that when he reluctantly joined us on a family picnic,  he  complained about the surrounding  germs that lurked everywhere.  He  then lined the park benches with newspaper before sitting down, thus avoiding as much contamination as possible.

However, after his brain became coated and tangled with disease,  all of that changed.  He became a scruffy, smelly old man; all because he was afraid of being cold.   Not only did he begin layering his clothing;  two pair of trousers and two flannel shirts  — over his long underwear —  he topped it all off with a sport coat and hat.  This ensemble he wore constantly, indoors and out, year round no matter what degree the summer’s temperature might reach.  Fearing the cold he would not bathe or shower.  Offering their help in keeping their grandfather secure and warm our sons , with Ken’s help, made every effort to get Nick into the shower.   He would not remove his clothes for any reason, including his need to bathe.   At first we thought some of his refusal might be modesty, but the more the male members of the family coaxed the more adamant he became.  “No.  I don’t want to be cold,” he insisted.

Bi-weekly I took Nick to his barber with whom he had a long-time relationship, and with whom Nick still felt a large degree of comfort.  The barber would back the old man’s chair up to the washing station and give his hair and scalp a good scrub, much to a loud and continuing protest from his reluctant customer.   Minutes later and realizing he had survived, Nick relaxed and allowed his friend to shave his face and cut his hair.  At least that part of him was clean from time to time, but the rest of him reeked and remained a problem.

At home, with the thermostat turned up beyond normal and armed with two pair of  trousers, two shirts and clean underwear we finally took matters into our own hands.  Catching him unaware we unbuckled his belt pulled down the triple layer of pants and slipped on the new.  The same with the shirts.  Clutching at his clothes, but over his fierce defiance and near hysteria we accomplished a portion of getting him “clean.”   Not the body, but at least the clothes.  The whole ordeal was so upsetting to him that we dared not even think about continuing the cleaning process by putting him into the shower.

With no memory, rapidly failing health and faltering steps causing frequent falls,  Ken and his sister, Loretta, decided that the next time their father fell and was taken to the hospital — which was becoming more and more often — they would have him transferred to a full-care facility.  I agreed.

It’s always such a soul-searing dilemma to make that decision and at first the three of us thought we may have waited longer than we should.   However, in retrospect we have all agreed that in spite of his inability to care for his personal needs, he was as happy as he could be living in the familiar surroundings of his own home with Rose.    When we went to visit Nick in his new surroundings,  he had been tubbed and scrubbed and was as clean as a whistle.  We knew that he had lost at least one battle of the bath.    He wasn’t there a full week when we received a call from the head nurse telling us that Nick had expired,  having suffered a fatal heart attach.   Knowing how hysterical he reacted to us in our efforts to bathe him I have always wondered if, perhaps, the attendants were preparing him for a bath when he succumbed.  He was 84.   If so, then I believe that once again Nick won his battle of the bath.

Originally posted 2009-03-04 08:45:47.

CHRISTMAS LIGHTS AND FEAR

December 22, 2008 — Last year I put up lights along the roof line of our house, but found that Ken would turn them off as quickly as I turned them on.  I couldn’t imagine why he wanted them off, especially when we would drive through the neighborhood where he admired the Christmas scenes on other people’s lawns and beautifully lite homes, but still insisted that our house remain dark.

Recalling how he felt, yet not wanting our house to look as if our last name was Scrooge I strung lights around the posts on the front porch and let it go at that.  Still, we played the off and on game.  Tonight, after standing outdoors surveying the other houses nearby, he came in from the cold extremely annoyed because “those” people had their Christmas lights on and there was nothing he could do about.  I agreed with him saying,  “That’s right.  There is nothing you can do about other people having lights on their roof and Christmas scenes in their front yard.”  Then I asked, “Why does it bother you so much.”  He had a difficult time formulating why he was so annoyed, but finally he was able to express his fear — and it was fear.

Looking very troubled he said, “When all those lights are on along the street there are criminals who will take advantage of it and will rob the houses.”   Surprised at his reasoning, I asked, “What has happened in the past to make you believe that our neighbors, or us, have been robbed during Christmas?”

Then I got the all-knowing look as he continued, “You don’t live here all the time, so you wouldn’t know what happens in this neighborhood.”  Ken looked at me suspiciously and laughed, a mocking kind of laugh that said, “Just you wait.”

He had become Mr. Hyde in the blink of an eye and I am no longer his wife.  The intrusive Mr. Hyde always intensifies Ken’s growing paranoia.    He quickly followed with, “Ask my wife about it when she comes home.  She can tell you about all that goes on because of the lights.”  Then he gave me the look which said, “I know something you don’t know.”

When Mr. Hyde appears I know it’s time for me to back off.  This is when I say,  “Our discussion is closed,” or some other remark to dismiss myself.  He doesn’t want to let it go attempting to provoke me into a further argument while still embracing his fears.   I know the fear is real and I never try to scoff it away, but coaxing him into the family room is a distraction which usually works.   Watching TV, looking at the Christmas tree and hearing me prepare dinner is relaxing and seems to soften his mood.

It’s always a relief to find out what troubles my AD patient.  At times the problem can be fixed, but sometime not.  I’m not going to ask my neighbors to turn off their lights.  I’m glad, though, to discover why he doesn’t like the lights, and I’m grateful when I hold my tongue.  No sense turning the trivial into an argument.  It’s far better to remember how my husband enjoyed the Holidays in the past, and how pleased he was the first time we hung lights along the edge of the roof when his only fear might have been falling off the ladder.

Originally posted 2008-12-23 06:24:44.

the scream by Edvard Munch

Ungrounded fear is another trait of those with Alzheimer’s.

October14, 2016 – Just the word Alzheimer’s strikes fear in the hearts of just about everyone I know. It doesn’t matter if you are old, middle-aged or a young adult. It is a fearful disease. Alzheimer’s also appears to be a family disease, often passed on from one generation to the next, but not always. I like to quote from my primary-care doctor when I asked him about Ken following what I believed to be early signs of the disease. “Both of my husband’s parents had Alzheimer’s in their later years, doctor. Does that mean Ken will get Alzheimer’s when he gets on in years?” The good doctor smiled and said, “When conception occurs, the fetus has a vast gene pool from which to draw, so my answer is maybe yes and maybe no.”

I would have been much more satisfied if he could have given me a definite “No,” but with the disease in epidemic numbers at this time, his vague response was an appropriate answer.

QUESTIONING HIS OWN CONFIDENCE

Whether or not he was doubting my love for him, or questioning his own self-worth the day we picked up his first prescription of Namenda which had been prescribed by his neurologist, was a day of fear. The cost, especially compared to his Vitamin B shots was staggering. Arriving at the pick-up counter he grimaced at the price, looked over to me mouthing the amount. Then he asked, “Am I worth it?”

Walking to his side I replied, “Of course you are. We’ll pay whatever it takes. I love you.” He picked up the small package and we returned to the car.

ANOTHER CAA lon

A few years into the disease, I watched his paranoia set in with the fear that followed. Within the safety of our home, he worried if the blinds were open. He safety checked each room making sure no intruders were lurking behind the bed or hiding in the closets. Peeking through the slats of the blinds he warned me not to open them during the night because there were people shining bright lights from the buildings behind us, watching what we were doing. I never argued with him about the possibility. I knew enough about the strange disease not to confront him about his delusional behavior.

BEING ALONE WITHOUT ME

A long-time friend called from out of the blue suggesting I call a certain number in San Francisco to see if Ken might qualify for their program of clinical trials. We made an appointment where he was examined by several doctors and staff who confirmed that, indeed, he did have Alzheimer’s. The doctor in charge suggested a few tests where they might be able to use Ken, if he was accepted into the program. “He’ll have to spend a few nights with us,” we were told. As soon as the door closed and the staff was gone, Ken looked at me as if he were a frightened five-year-old child. “I don’t want to stay here without you,” he murmured. Seeing the fear and worry in his handsome face I reassured him that if he stayed I would stay with him.

Because Ken lived his life with Chron’s disease as well as AD., he had experienced several blockages. Following his battle of decades with Chron’s, the doctors removed several feet of his small intestine that was badly diseased. The removal of this important part of the digestive tract caused his system to discontinue absorbing important vitamins,minerals, other nutrients, and medications taken by mouth. With these facts the decision for Ken to participate in the scheduled trials was more than “iffy.” Later that week I called to see if a decision had been reached. Ken was disqualified as there was no way of knowing with certainty that the medications would be absorbed because of the missing section of his digestive system.

As Alzheimer’s continued over a number of years I believe his fear and paranoia left. I had no doubt that his shrinking brain had eliminated much of any emotion he may have had. I only hope that deep somewhere inside he knew that I never left him to be by himself. Alzheimer’s disease is a horrible thing to happen to anyone, and that in itself can justify fear to his progeny. No matter what the outcome, comfort may come from knowing that despite fear, medical advances and research bring hope for a future cure, or at least some way of control and slow the speed of decline. 

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