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Archive for the ‘illness’ Category

I met Dotty last week.  Dorothy is the mother of Bob DeMarco, writer and editor of The Alzheimer’s Reading Room, and his topics appear to be endless.  To cover all the bases he is a prolific writer, sometimes invites guest bloggers to contribute, quotes from many sources, and all in all probably supplies the best variety (including professional articles from medical people) of AD information on the internet.  Bob has written 1,810 articles while caring for his 94-year-old mother who has been a victim of AD for approximately seven years.  Bob is devoted to her.  He is also striving to be the best caregiver possible.

Dotty met her admirers through a short video Bob made for the Reading Room.  I was impressed.  Ken having been diagnosed with Alzheimer’s about the same year as Dotty, I expected them to be comparatively close in their journey.  I do have to admit that Dotty is ten years older than Ken which makes a tremendous difference in their physical condition.  While Dotty appears to get around with “hurtful knees,” Ken still has good upper body strength, but does have a little trouble keeping his balance and when he walks there is some shuffling.

What did impress me with Dotty was her ability to carry on a comparatively good conversation with Bob.  In the video Bob spoke of ice cream.  She knew about ice cream, appeared to remember ice cream, and when it was offered expressed excitement in getting some.

Ice cream is Ken’s favorite dessert.  My freezer is never without it.  Before his illness I could count on him going to the garage and bringing in a container.  He wasn’t content to get a bowl and serve himself a helping; rather he would sit down and eat from the carton.  Even though it was just the two of us, I felt annoyed at this somewhat inconsiderate practice.  “Don’t worry,” he would counsel, “in a few days I will have eaten the whole thing leaving no germs for anyone else.”  Then he would laugh knowing I didn’t approve, nor did I have a snappy comeback except maybe, “Oink, oink.”

When I serve him ice cream now, I have to tell him it’s ice cream.  He takes a bite and says, “This is good.”  However, he never says, “I would like some more ice cream,” or “May I have some ice cream.”  He no longer remembers the name of his favorite dessert or that he even had one.

I also listened to a recording of “Dotty in the morning.”  She is conversational; touching on the weather, the day, her knees hurting, and even sends a verbal jib to Bob in a form resembling sarcasm.  She was also a little cranky, which is permissible at 94.

I suppose what I am doing here is making a comparison.  Even though there is that age thing, both Dotty and Ken have had AD for approximately seven years.  I also suppose it’s a natural thing to do when there is a similarity in a problem; in this case an illness.  I once asked my good friend Madalyn a few “when” questions.  Kindly, she said, “Everyone is different.”  Even though I am convinced of that I found it interesting to do a little comparing with Dotty and Ken, concluding that Ken’s disease has ravaged his brain much more than AD has ravaged Dotty’s.

Within our immediate families we have Ken’s mom and dad, his sister, my mom and Ken, that’s five.  Outside of our immediate family, and still counting, we have close friends and cousins who have been stricken with AD and the list is growing.

Still my search for answers continues.  With each dear person I tend to make comparisons – as I have done with Dotty – and as I compare I am filled with more questions.  Uppermost being (which has no answer), what is it that allows the disease to ravage some victims very quickly, and others more slowly?  The following are other questions always on my mind:

1,  Is there recognition?  Their children?  Spouse?  Brothers and Sisters?  Friends?

2.  Can they still carry on a conversation?  How far into AD did they lose that ability to communicate in what might be considered a normal conversation?

3.  Are they combative?  If so when in their AD did it begin?

4.  Are men more combative than women, or is it an individual thing?

5.  Can they still feed themselves?

6.  Can they attend to their private needs?  If not when was the change noticed?

7.  How long does AD last?  (I know that answer from the people at Alzheimer’s Research.)  Victims can live with AD for 20 years or more.

8.  After watching and listening to Dotty I could ask, “Why is Dotty able to communicate better than Ken even though their time frame is similar?”

Another case in point is Loretta, Ken’s older sister.  They are very much alike in their digression, although she was stricken a few years before Ken.  Their decline has had a separation of about three years which is their age difference, making it all the more interesting.  I have often said that because this sister and brother are so much alike they could have been twins – identical twins – which is impossible.  Still, I have always called them two peas in a pod.  So much alike during their lifetimes, and also is their AD journey.

Both of their symptoms resemble those of their father, Nick, rather than the symptoms we noticed about their mother.  During his AD illness, Ken’s father was stubborn, angry and I believe could have been combative, but we don’t know.  His mother was meek, submissive and depressed during her husband’s illness.  In private care, with her own AD she continued being meek, submissive and depressed, but she was also grateful, friendly and kind.

My own mother regressed back to a little girl.  I watched her lose memory of my sisters and me (she knew I was someone, but didn’t know who).  At one point she though of herself as a young adult wanting to meet people her own age so she could get married and raise a family.  She even asked my father if he could introduce her to other young people in the community.  Continuing to regress, she became a little girl who believed I was her mother saying one day, after spending hours with me in the car, “I was with my mother all afternoon.”

People have said to me that Alzheimer’s is an interesting and fascinating disease.  Then they apologize because of their supposed lack of sensitivity.  “Don’t apologize,” I answer, “I thoroughly agree.”  Although I am completely immersed in the caregiving aspect of the disease, and feel downhearted at times, I also find AD fascinating.  I suppose that’s why I am so curious and plagued for answers.  I will continue to search and compare Ken with other AD victims in my own quiet way.  Perhaps it will help me gain more understanding about my assignment as a caregiver.  Like Bob, I would like to be the best I can be.  I do know that reading of others who share in this journey helps me to cope.

Meanwhile, I hope to become a more compassionate, caring and empathetic person — and caregiver.  Nevertheless, as I search for answers I must remember the sage words from Madalyn and accept the fact that “everyone is different,” including Ken and Dotty.

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This morning one of my emails was titled “We will NEVER see ads like this again.”  A truer statement was never spoken with the viewer’s emotions running from a hardy laugh to severe annoyance: weight loss using sanitized tape worms; the ever-sought-after freckle cream – probably from the 1920s — a very young Ronald Reagan, Lucy and Desi Arnez, plus a couple of babies, and a few doctors endorsing some of the popular brands of cigarettes. Others ads from the 1950s demonstrated the arrogance of Madison Avenue in its view of “the little woman,” and the ultimate of ads approving male chauvinism during the peak years.  But the one that really grabbed me was a poster featuring a thin, angry old man waving his cane as a possible weapon.  Printing was simple and to the point “for prompt control of Senile Agitation – THORAZINE.”

“SENILE AGITATION!”  That was a new term for me, and I thought I had heard them all.  Yet there it was in all of its stylized advertising glory; another reference to Alzheimer’s disease easily dismissed as nothing more than a confused grumpy old man. One more reminder of 50-plus years wasted when early attention to this devastating illness might have brought a cure closer.

Frustration dismissed, I wondered about Thorazine, the wonder drug to calm the irritable elder.  Was it a flash in the pan of long ago, just hype for the public, or did it have merit?   I looked it up on the Internet, and found, that indeed, it did have merit and was the first drug breakthrough for help with mental illnesses.

Developed in 1950 Chlorpromazine (CPZ) was a banner achievement for both the medical field and for patients alike.  Marketed in the U.S. as Thorazine (and Largactil in other parts of the world) it was the first synthesized drug with specific antipsychotic action.

That statement made me go “knock, knock” on the door of my memory bank recalling a time when state mental hospitals were commonplace; a last resort where desperate families unable to cope placed their “crazy” loved ones.  The state facilities, under-funded, over-crowded and under-staffed were unable to cope as well, and the hospitals became ugly and shocking “snake pits.”  Early in our marriage Ken and I saw a movie with that title: “The Snake Pit” starring Olivia de Havilland.  An over simplification of her character’s illness was, no doubt, depression which led to horrifying delusions where she saw herself surrounded by countless, slithering snakes.  I suppose it was our first awareness of ordinary people suffering from psychotic problems.  Yet, even in our youthful innocence the movie and the growing social crisis were tucked away in the back of our mental filing cabinet.    

A few years later Ken’s cousin, who was a fabulous school teacher, but suffered from episodes of severe depression tried to commit suicide — several times.  Her husband, at a loss for any solution had her confined for a short time in a state mental institution where she received electric shock treatments, better known as electroconvulsive therapy. At the time I thought how barbaric and wondered if there was no other kind of treatment.  There wasn’t – yet.

Reading about CPZ I found it was considered the single greatest advance in psychiatric hospitals worldwide and became the prototype for phenothiazine, which would later be developed into a class of drugs comprising several other agents, all for the treatment of mental illness.  Furthermore, the availability of this kind of medication began to curtail the indiscriminate use of electroconvulsive therapy and psychosurgery.   Fortified with Thorazine as an alternative treatment, the new phenomenon also became the driving force behind the movement to deinstitutionalize the nation’s mental hospitals.  No doubt those state hospitals, those snake pits, had their share of dementia-related diseases.  In hindsight we know that Dr. Alzheimer’s first case study was found in an insane asylum in 1906 where treatment and conditions were probably even more deplorable.

After reading about Thorazine and how thrilled everyone must have been at that breakthrough, I will now consider that I have been too critical of the medical community. (Although I still believe Alzheimer’s and related diseases would be sitting motionless in a dusty back room had it not been for persons of note: namely former President Ronald Reagan, Sargent Shriver, Michael J. Fox, and others, who brought The Dementia Umbrella diseases to their full prominence finally receiving the medical attention they deserve.)  I have been critical of precious time vanished while waiting for results from research, impatient for concrete solutions.  However, I also believe it’s easy and understandable for me to be restless while Ken continues to slip away and all I want is something to make him better, to bring him back to where he was, to where we were. I just want my husband back.  So we, the loved ones, can’t help but be anxious for researchers to find a cure, or at least a way to effectively manage Alzheimer’s and all of the other Dementia-related diseases.

Through technology, we hold unending information in the palm of our hand in an electronic device no bigger than a deck of cards.  Doesn’t it seem logical; somehow, that knowledge, information, technology and treatment for the ill should be as available as well?  The answer ought to be, “Of course,” but that’s just not true especially for those with mental problems and diseases.  I suppose the mind is like space: so much of it is yet uncharted, so we need a big breakthrough – like Thorazine — and while we are waiting for one, we tend to be impatient.

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 Several years ago, when the husband of my friend, Madalyn, was well into severe Alzheimer’s and Ken’s disease just beginning, the two of us went to several support group meetings.   The speaker one evening was a health-care professional; the title of her presentation was dementia.  How often both Madalyn and I had heard the word interspersed with Alzheimer’s, making us wonder if our husbands had Alzheimer’s or were they demented, having dementia.  Were the guidelines established enough that we could tell one disease from another?

“Dementia,” the speaker explained, “is the umbrella, and under that umbrella the medical community is placing what they believe to be related diseases, even though some people are diagnosed as having dementia.”  She went on to explain dementia as a group of symptoms caused by changes in brain function, or a decline in cognition.  Though defined, it still left us a bit baffled.  However, with so little known about the actual workings of a diseased brain and other neurological disorders, dementia as an umbrella seemed to make sense, especially when the speaker placed Alzheimer’s, Parkinson’s, Lou Gehrig’s disease (ALS) and MS (multiple sclerosis) under the umbrella.  No doubt she included other diseases lesser known to Madalyn and me totalling more than 75 in all, but the link placing them under one umbrella made good sense.  Whether the dementia symptoms may later change and develop into any of the encompassed diseases wasn’t a part of her topic, nor am I a medical person who could make such a determination, but it would seem reasonable to presume that the answer could be “yes.”

Over these past six years, as I have journeyed with Ken into the fog of Alzheimer’s it seems as if the cases under the umbrella are becoming almost epidemic.  I often hear people say, “It’s because everyone is living longer.”  That observation conjures up another burning question.  Is it inevitable that living longer will bring the majority of four score and younger people into the hopelessness of brain disease?

When Ken and I first married we were best friends with three other couples.  We were not a group, but they were best friends, nonetheless, with us, and we have kept in touch with all of them through the years.  Today, two of the women and two of the men are under the umbrella diagnosed with short-term memory loss, two with Alzheimer’s and one with dementia.  All of the disorders began somewhere in their mid to late 70s.  Yet, with our large circle of friends and acquaintances I have also observed early-onset of Alzheimer’s and Parkinson’s, and one death from ALS.

The mother of Barbara, my friend with short-term memory loss, was sent off to a state mental hospital in her mid 50s with what they diagnosed as brain deterioration.  Was it actually early-onset Alzheimer’s?  Earl, who has dementia, is the son of man who suffered most of his life with severe Parkinson’s.  Our  daughter, Debbie, had a favorite beau during their teen years who tumbled dramatically into full-blown Parkinson’s in his early 30s, as did celebrity Michael J. Fox.

With the power of his celebrity Fox brought world-attention, and hopefully more research, to his disease.  Of course, the 40th president of the United States, Ronald Reagan, brought the same extraordinary attention to Alzheimer’s during his 10-year battle with the disease, as did movie great Charlton Heston.  People no longer talk about a second childhood, senility, brain deterioration or sun-downer’s disease.  These umbrella diseases — with people of all ages becoming victims — are no longer swept under the carpet to be ignored as just some old folks’ ailment.

If there is a question here it would be:  Will there be a breakthrough in finding a cure, or at least management for these dreadful diseases?  If so, when? And, if a reliable treatment for AIDS was found in a relatively short period of time, what’s holding up research for The Dementia Umbrella?   According to a recent paper from Johns Hopkins the future looks alarming for 1 out of 2 people who will get Alzheimer’s if they live long enough.  That’s 50 percent.  Research and solutions are musts for the coming generations.

Presently, there are no real answers, but there are some quiet observations.  In watching my friends and reading about Fox, Reagan, Heston and others, their spouses are incredible as they walk with, sit by, and worry about those they love.  Collectively, they have all remained devoted which is not only inspirational, but encouraging to all of us caregivers traveling that same unfamiliar path.  The battle which goes on under The Dementia Umbrella can bring out the worst in people or it can bring out the best.  I don’t know everyone struggling under this covering, but those I see, read about and know are phenomenal human beings. Kudos to these caregivers everywhere.

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In early February I wrote a blog titled “This’ll either cure ya or kill ya”, https://annromick.wordpress.com/2010/02/15/thisll-either-cure-ya-or-killya-or/ about the importance of doing research regarding your own and your family’s medications. My husband started displaying psychotic behavior following a long period of taking and combining certain o.t.c. remedies and prescription medications.   I ended up weaning him on my own, which did temper the bad behavior.  He now takes only one pill for high blood pressure.   However, it is so easy to trust, believing that medical people are always right, but that assumption is so wrong.  Not only is it wise to be alert with what cures you take at home, it is even more prudent to challenge medical people if you end up in the hospital.  And most important — if you are unable to speak up for yourself, ask a friend or a family member to monitor your medications and progress.  A good watch dog may save you extra days in the hospital and just might save your life.

A week after the automobile accident of February 15, I was transferred from ICU and the trauma unit of one hospital to the CCU of my own HMO hospital.  While my family continued to hover over me, I was improving, which was the good news.  The bad news seemed to be the attitude from some of my HMO’s medical people. 

The disadvantage of my HMO (I don’t know about others) is that your own doctor — your primary care physician — is not part of your hospital stay.  He/she sees you only in the office, and while the doctor and patient may become very well acquainted, the doctor has very little, if any, say in your health care while you are confined to a hospital bed — nor does he/she ever come to see how you’re doing.  I suppose I’ve been spoiled by my former medical plans where my doctor’s daily visits were so beneficial.

The HMO doctors assigned to me were, no doubt, skilled in their profession, but appeared to be lacking in sincere concern as to my physical and mental well being.  It seemed the main focus was how quickly they could eliminate my need for being there, and how long would I have to remain before they were allowed to discharge me and ship me off to a convalescent/rehab facility.   They often made me feel as if my expenses were taken directly from their salaries.

Several days after being admitted, one of the doctors said to my daughter-in-law, Sabina, “We are going to send her to rehab.  I find no medical reason for her to remain here.”  Surprised by the declaration, and checking through a chart which she personally kept on my condition, Sabina listed all of my medical problems which had not been resolved, insisting they be addressed before I left.  ‘Do you want me to commit fraud?” questioned the doctor, annoyed at being challenged, but still not motivated to look into my remaining health issues.

That same afternoon I developed a terrible ache which seemed concentrated in the left side of my back.  With each breath, I felt stabbing pains.  Sabina discussed the new condition with Dr. Stubborn, insisting that the pain be checked, forcing the doctor into action.  I was sent for further examinations resulting in treatment.   Apparently, my left lung had been collecting fluid and needed to be drained with a tube inserted through the chest wall and attached to a drainage bag, plus another round of antibiodics.   Without Sabina speaking up for me, I would have been transferred to rehab with at least one serious medical condition.  Speaking up for myself was difficult because I wasn’t sure of my own medical needs making it easy for a medical professional to convince me I was perfectly all right and ready for the move.  I remained in the hospital for another week.

It was the same with medication.  One doctor would remove a drug, and if it wasn’t so noted on my charts, another medical person would want to continue the dosage.  “I know you aren’t familiar with the names of your medicines, so count the pills,” suggested Sabina.  “If there are more than seven, ask the nurse what each pill is supposed to do.”  That I could do, and I began my own questioning, even spitting out pills which had been discontinued.  I used the same system while at rehab, and many a time, the prescribed meds offered were no longer needed.

Fortunately, during those occasions when I was unable to speak for myself, I had an excellent watch dog.  Without Sabina’s voice challenging doctor’s decisions and being so vigilant in overseeing my medications, I could have slipped into a serious decline, and, at other times, would have been way over medicated.  None of the above is good for any patient.

Personally, I find it difficult to move on from the days when your doctor knew you and your family’s medical conditions as well as his own, and was sympathetic to your needs.  However, reality tells us that with medical people being pulled in so many directions in today’s world, and dictated to by the profit portion of  HMO’s insurance policy makers, those memorable days of yesteryear are gone forever.  It’s now up to us and our loved ones to be responsible for taking charge of our medical needs.  If something doesn’t sound right, speak up or have someone do it for you — it just might save your life.

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