doctor

THIS LITTLE PIGGIE WOULDN’T DARE GO TO MARKET

Sweet tiny baby toes can turn into a monstruous care job for people with Alzheimer's.

What miracles we all were, slipping into this world soft and cuddly with skin as smooth as a dish of newly churned butter, a patch of hair – or not — and fingers and toes — miniatures of perfection.  And then we begin to grow into the person our genetics will make of us.  A few months later a mother coos, her thumb and forefinger wiggling a small delicate appendage located at the end of a tiny foot, “This little piggy goes to market.”  The gentle movement sends tickles through the rest of the baby’s toes and the whole of this small scrap of humanity bursts forth into a cascade of delightful giggles so contagious that all assembled laugh with him.

A decade or so later the foot has booted a few soccer balls, been on the ground side of sliding over home plate with the winning run at the Little League Park, and got itself (and owner) in trouble for kicking dirt at the umpire.  Before he rents the shiny dress shoes for his senior ball those same feet, grown to measure nearly one “foot” or more will have been stomped and tromped by the opposing football team more times than any young man cares to remember, and if he steps on the toes of his date, or she steps on his it won’t matter, because – with feet and toes — there’s always more abuse to come.  It’s all part of the battering the lower extremities take during a lifetime.

They’ll be bruised and banged, sprained and strained, stubbed and rubbed, tubbed and scrubbed, stepped on, dropped on and possibly run over before getting the pampering they deserve after years of unrelenting service.  “Hon,” Ken called out years ago, “can you cut this one toe nail?”  My first thought was not one of wifely cooperation.  I didn’t want to cut his toe nails.  “Can’t you do it?” I retorted, wondering when he had become incapable of caring for his own feet, and fearing his toe nails were beginning to look like those once belonging to his father.  Reluctantly I ventured in to find him struggling to get the clippers to cooperate.  That’s when I noticed.  Yes!  His toe nails were changing – becoming thick and yellowish — taking on an appearance almost like the talons of an eagle.   

I had cut his father’s toe nails a few times when we couldn’t get him to a podiatrist.  They needed to be soaked and softened making the task manageable.  Looking at Ken’s troublesome toes I told him to soak his feet.  “You’ve got your father’s yucky toe nails,” I concluded, as I began snipping away at the thick mass.

We later found out that it actually is somewhat of a genetic thing.  Not so much guaranteed, but Ken has the gene which causes susceptibility to the fungus causing the nail to thicken and turn brownish-yellow in color – no doubt inherited from his father.  It became my chore as the symptoms became worse to trim his toe nails, which was all right.  Over the years I had trimmed lots of toe nails for our older relations – and all were relatively easy with ordinary clippers when no fungus was present. However, I found the best tool for Ken’s yellowed toe nails was a small pair of pruning shears (which I dowsed with bleach after every use).  Their ability to snip through a tough branch made them ideal for snipping through the thickness of an ailing toe nail.

Apparently, having a predisposition to onychomycosis is quite common and the fungus is very opportunistic latching on to a victim at swimming pools, showers and other public places where one might be barefoot.  Not having the gene, my toe nails are just fine, but some of my children are showing early signs of toe nail fungus.

There is a medication on the market which, supposedly, eliminates the intruder.  The ad on TV was so disgusting I always turned away after I had watched it a few times. This ugly animated creature (the fungus) lifted up the nail of the big toe and with a devilish smile climbed inside making itself right at home and settling in for the long haul.  The thought and the ad gave me the creeps.  Furthermore, in reading the lengthy list of side effects my conclusion was that no one should be taking that particular medication for any reason even for yucky toe nails.  However, I also understand that it works especially if, all of your life, you’ve been kind to your liver which has an awful lot of extra hard work to do while coping with the toenail drug.  I have also read recently that the fungus can be treated with Laser if caught before it becomes too entrenched.  Furthermore, some of the essential oils, such as tea tree oil, do a good job as well.  I’m glad there is something for so many out there troubled with this intrusive nuisance.

Ken’s foot problems, though, are beyond striving for a cure.  Just getting the nails cut is the challenge, and getting him to the podiatrist – any of his doctors — is a pull-out-all-the-plugs effort – gargantuan — but it’s worth it.  Ben came an hour early so we could get everything done: out of bed, into the bathroom, cleaned and shaved, into the shower, out, get dressed, into the kitchen for breakfast.  “Good,” Ken grumbled, “I haven’t had anything to eat all day.”  Up from the table and into the wheel chair, out the door onto the driveway, out of the chair into the car.  “Move over so Ben can sit next to you,” I encouraged.  He growled because he would just as soon drive away leaving Ben at home, but Ben managed to squeeze into his space.  Besides, we need Ben. Off we go and we’re actually going to be there on time.

Once we arrive at the medical offices and no matter how bad Ken’s AD gets, it appears he is still putty in the hands of a doctor.  He sat down in the chair – Ben did hold Ken’s feet to prevent him from punting the good doctor into the hall if he took a mind to be combative.  With firmness, I gently held his hands and Dr. Laura trimmed the toe nails.  Within five minutes it was done.  “There,” she said, patting Ken on the knee, “That will hold you the next three months.” 

I am on top of the world, reeling with success when we have a good day.  A good day is when plans are made and the task is completed.  With a smile and a sigh of relief I said, “Let’s all three of us get into the car, go home and have lunch.”    “Good,” grumbles Ken.  “I haven’t had anything to eat all day.”

Originally posted 2011-08-27 23:34:53.

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.

VALUE AND RESPECT

“You’ll have to take me out of here in a box,” said my mother many years ago.  She and my dad had retired to a lovely piece of land just a few miles west of Sebastopol, California in beautiful Sonoma County when they were in their early 60s.  My dad, who had worked at Hunter’s Point Naval Shipyard received an early retirement because of his worn-out knees which made it next to impossible for him to continue climbing up and down the ladders of America’s former war ships.  He was also one of the “older” employees so it was easier for the Navy to just retire him rather than to be concerned with Dad’s aches, pains and restricted duty.  Besides, the war had been over for many years and keeping up the fleet was becoming a thing of the past.  In their search, my parents found a small piece of God’s amazing planet, built their dream home and settled in to enjoy the rest of their lives.  We, three daughters and our husbands, could only have hoped that their fabulous retirement years extended into nearly a quarter century.  Little by little, however, Father Time collected his toll from both of them.  Dad developed several conditions including congestive heart failure and Mama had recovered from a broken hip and kidney stones, but was becoming a bit forgetful.

As a family, we would often organize and spend a weekend at their acre and a half, trimming, weeding and trying to keep up with the demands of their little farm — an impossible task — but a fun getaway for us and helpful to them.   All the while, they stubbornly stuck to the earlier declaration of living where they chose until they died.  Even though there was concern from friends, neighbors and their church leaders, we three sisters allowed our parents their own decision.  My two sisters lived in Washington state and so the responsibility of Mom and Dad was, basically, mine.

Mama still picked from her garden, canned fruit from their trees, froze a few vegetables, and the two took care of each other.  My father could still drive during the day so they met their doctor’s appointments, shopped in town for their needs and actually got along quite well.  My one sister and her husband came from Washington for a visit and decided while they were there, she would do some “scudding out.”  With my father’s permission, and while my mother was engaged elsewhere, my well-meaning sister took it upon herself to clear out what she believed to be “older” jars of fruit and canned goods.  Loading half of my mother’s summer efforts into the back of her car, she took it all to the dumps.  Among the loss was Mama’s favorite Raw Tomato Relish.

It wasn’t until my sister and her husband were gone that Mama went to her storage looking for a jar of her favorite relish and found the cupboards half bare.   Puzzled, she asked my father if he knew anything about the missing supply.  Reluctantly, Dad had to confess his part in the vanished jars, explaining my sister meant well and had promised to toss only out-dated storage.  Mama was not only furious, she was crushed at not being consulted; at being treated as less than a thinking, reasonable and responsible adult.   A person without value; a person who, in Mama’s eyes, was no longer respected.  “What are we,” she said, “if we have no value and no respect?”   Feeling betrayed by not only her daughter, but by her husband as well, she fell into a long period of depression.

Eventually, she came out of her sadness, buoyed up by forgiveness, and life resumed for the two of them.  I certainly wouldn’t imply that her forgetfulness escalated because of the incident, but she began to slip further and further away.  To compound her declining health and memory loss, she developed leg ulcers (not successfully treated at the time).   One October day, Ken and I drove up for a visit.  I found her sitting on the patio, enjoying the last bit of an Indian Summer and reading.  Her legs were outstretched on a lawn couch and I noticed she had been self-treating an ulcer on her ankle, but the entire leg was an angry red and swollen.  “Has Greg seen your leg?” I asked.  Greg was a local doctor who lived next door with his wife and two daughters.  The family was devoted to my parents.  While he was not their physician, he watched over them, suggesting at times they see their own PC.  I knocked on his door and asked if he would take a quick look at Mama’s leg.  “She has a bad case of cellulitis,” he said, “and she needs to be in the hospital, now.”

My father declined our invitation to come home with us while Mama was in the hospital claiming he could care for himself and if he needed something he had neighbors.  We made certain she was comfortable and cared for at their HMO in San Rafael before we headed home.  I called my father during the week and visited Mama as often as I could.  At week’s end she was well enough to go home.  As we entered their house my father sobbed like a child proclaiming his loneliness, admitting they needed to give up their wonderful home and move closer to us — not live with us — just be close.  He realized that he could no longer care for his wife without help, especially after acknowledging the fact that her dementia was Alzheimer’s.

We found a nice little house less than a mile from where Ken and I lived, only a telephone call away, a 15 minute walk or a quick ride.  After a time, and with my mother’s advancing AD they required live-in help in addition to what I could provide.  But I still managed their affairs, and understanding the importance of “being master of one’s own ship,” I allowed my father to believe he was the one in charge.  He reviewed the mail and studied the bank statement, a job which had been my mother’s all of their married life.  I doubt he understood what he was perusing, but doing so returned to him his sense of independence.  Dad was still in command — the head of his household.  I never made a decision without consulting him, never took away his authority which allowed him to be a person who stepped up to the plate, taking on the responsibility in providing for the care of his beloved wife until her death, at home in her 90th year.   He died six months later at home — also in his 90th year — a man of honor, a man of value and respect.

Originally posted 2009-08-25 08:26:49.

ALZHEIMER’S, CLINICAL TRIALS, HOLISTIC TREATMENTS AND SPICE

ADVENTURES IN HOLISTIC TREATMENTS

Using the spice tumeric has been reported as a possible holistic medication for Alzheimer's.

3/30/12 — Shortly after Ken was diagnosed with Alzheimer’s our grandson Sean called to tell me about turmeric. This was in 2005:  former President Ronald Reagan was still alive and afflicted with AD as was Sargent Shriver and several other well-known people.  It’s been my belief that having celebrity names included under the Dementia Umbrella brought the escalating problem up close and in the face of not only society, but the medical community as well. On the market to fight the dreaded disease were two medications Aricept and Namenda, and then, for me, came a shot in the dark: turmeric.

“The spice,” I asked Sean.  Yes, the spice.  I just read an article where studies have been made in India about AD.  What they found in this vastly populated country is that only 4% of the population shows any signs of Alzheimer’s, where in the U. S. it’s fast approaching 50%.  Scientists have wondered about their diet – so different than the Western diet – and if it has any effect on avoiding Alzheimer’s.  The question of spices was also posed with concentration on curry, of which turmeric is the main ingredient. The article went on to state that UCLA and the VA were going to do studies on the spice – to see if it could be useful in treating Alzheimer’s.”  I thanked Sean, telling him I wasn’t going to wait for studies and would check it out with our doctor.

My dear Dr. Pleasant (as I refer to him) smiled, controlling himself as I told him of the report so as not to roll his eyes, and said something like, “really.”  Not flinching at his skepticism I asked, “What can the medical community do for us in treating Alzheimer’s?”  “Nothing,” he sadly replied.  “So, tell me how much turmeric can I safely give Ken?”  We talked and he checked his computer and I went home happy.  This was something I could do.

At the health food store I purchased some organic turmeric, gelatin capsules, a loading tray and I was set.  Beginning slowly I rationed the filled capsules to Ken which he swallowed along with a bunch of other vitamins and supplements he was taking, and we both felt as if life had given us a weapon.  After all, being optimistic is a good thing.

CLINICAL TRIALS

Meanwhile, my friend Shirley called and asked if I had tried to get Ken into clinical trials.  I hadn’t, but she continued with what information she had gathered and finally gave me a phone number so I could inquire if he was eligible for trials at one of the leading hospitals in San Francisco.  “Call them” she encouraged.  “It might help.” Ken had been on turmeric for a few years.  While I didn’t intend to stop the spice I did call the number and set up an appointment.

Once I had given them Ken’s history, including Crohn’s, the surgery and the loss of three feet of intestine, Ken was given an examination as well as a host of memory tests.  I was very impressed with their meticulous concern, their relay of doctors and the 3-hour time frame for the examination and evaluation, especially remembering how in 10 minutes our HMO neurologist arrived at his diagnosis.  After speaking with Ken and me for a very short period of time Dr. Hurry said, “Your husband has Alzheimer’s,” and that was that.

The clinic doctors explained what would be offered if Ken were to be accepted into the clincial trials and I felt very encouraged and pleased.  I also told them about his taking turmeric.  “Has it done any good,” asked the doctor.  I had to confess that I had no way of knowing because I wasn’t conducting a double-blind study, nor did I have any other basis for comparison.

After all was said and done, Ken was disqualified because of his previous surgery and the questionable ability of his system to absorb any medications taken by mouth.  We were, of course, disappointed, but pleased that we had given it our best shot.  And speaking of shots and patches, there were no other options at that time for any trials’ medications to be delivered to the body other than by mouth.

Even now with Ken, delivery by mouth is no longer simple. Following the severe automobile accident which involved both of us Ken wasn’t taking his handful of pills, nor the turmeric.  The combination of me healing and recuperating elsewhere for three months, his minor injuries, and the new caregivers in his life no one knew or thought to follow our regimen.  By the time I returned home he had forgotten how to swallow pills and capsules.  Still needing blood pressure medication his caregivers have been hiding the small pill in his food.

VIRGIN COCONUT OIL

As with turmeric (studies have been inconclusive) I ran the idea of coconut oil by our doctor mentioning that I had read some encouraging articles on the subject.  With the medical community still at square one, Dr. Pleasant resolutely gave me the nod.  I assured him I would begin slowly. I have Ben spread it on toast for starters.  Unlike turmeric, it tastes good, just like coconut.  Ben, from the Philippines, smiled and said they use it in many ways back home.

Will it make a difference?  I don’t know.  Did turmeric make a difference with Ken taking it for nearly four years? The answer is the same one I gave the clinical trials doctors.  I don’t know because I had no basis for comparison, and even if it delayed AD’s progression for any amount of time I would not know for the same reason.  I suppose as his caregiver-wife I am always ready to try holistic remedies because it allows some hope.  Not necessarily hope for cure or restoration, or some gigantic breakthrough; it just keeps me involved allowing me to be a partner in possibly making Ken a little better, perhaps making a difference no matter how slight with this dreadful and mysterious illness. And I suppose it’s like doing whatever I can do to bring a little bit of my husband back home – just for me.

Questioning, experimenting, reading, learning and wondering helps me to keep my chin up and this is what works for me, and with our doctor’s input I continue to inch forward.  I do say in conclusion; please don’t try anything new at home — on your own.  First, check it out with your doctor.  He still knows best — even if he rolls his eyes.

 

Originally posted 2012-03-31 03:23:18.

Sign-up For Our Newsletter

Sign-up for our free newsletter and receive expert tips from Ann Romick, a woman who has cared for 4 different family members with Alzheimer's over a span of 30 years. Be the first to get notification of her forthcoming book, Journey Into the Fog, based on her experiences.

We respect your email privacy

Email Marketing by AWeber