dementia

TEACHERS AND STUDENT

Several years ago my friend Diana listened as Ken talked for a few minutes then crinkled her brow just a bit and whispered to me,  “Is he having memory problems.”  I replied that he was and had been diagnosed with Alzheimer’s.  We talked about people we knew in common who suffered from some form of dementia, the medical field’s lack of knowledge and the sadness of it all.  Reassuringly, she commented about the brain being such a wonderful organ that we should be able to educate another one of its parts: transfer the data he was losing to a healthy section so to speak.  I wanted to say, “You mean like a back-up chip for the computer,” but I didn’t.   Instead I just  smiled and thought wouldn’t that be wonderful.   She spoke with such certainty that I didn’t want to pop her bubble by saying that a diseased brain doesn’t have a good section.  With Alzheimer’s the brain wasn’t injured and there was no part that had any immunity from the tangles and plaque. Also, research has found that whatever it is that causes the brain to “die” is contagious. It spreads from one section to another.

Diana isn’t alone in her thinking.  When my friend Jayne stays with Ken during those times when I have to be away longer than I like, she tells me that she “taught” Ken during the afternoon, using repetition.  Over and over she would tell him that he is married.  (Something Ken often denies.)  Then she would continue to repeat my name to him as if teaching a toddler how to say please and thank you.  At the end of her stay and my return home Jayne was convinced that Ken had learned something.  And I’m not one to say he hadn’t.  It’s like asking someone with no memory, “What did you forget?”  If you can’t remember, how do you know what has been forgotten?  It would be the same thing with knowledge.   When he does recognize that he is, indeed, married then something has happened  to allow that bit of memory to return, if only momentarily.  Is that restored memory or taught memory?

When his disease began and I noticed his forgetting, I too found myself teaching him.  Perhaps it wasn’t teaching, but more of preserving what he still had.  At least making an effort to keep some of the fundamentals.   I would spread playing cards out on the table and challenge him to a game of concentration: turn over a card and remember where the match is.  He did all right.  Was he learning or was that part of his still-functioning brain?  Our granddaughter, Jessica, often brought her game of “Go Fish” when she came to visit and we three would play.  Again, he did okay, but then that was a few years back.  All of his responses were better before.

I’m one who likes to read in bed and I asked Ken one night if he would like me to read to him.    He was agreeable, listening for a while before dropping off to sleep.  Did he absorb anything? Did he even listen?  Did I plant information or thoughts in his subconscious?  Did he subliminally learn while sleeping?  I don’t know.   It’s interesting, even though I smiled a bit at Diana and Jayne for believing he could be “taught,” I’ve seen too many demonstrations and videos showing the steps of destruction occurring to his brain.  Nevertheless, deep in my heart I too have felt if I tried hard enough and talked long enough I could change not only what was taking place, but I could restore bits and pieces of his memory.  Did any of our efforts do any good?  Did I extend his memory for any length of time?  I don’t really know.

So what does he remember? Career skills must be deeply planted in memory because he likes to add numbers.  I doubt if he could design much of a building nor could he make any sense from a set of plans, but he can still read the printed word, add  a simple column of figures and can think about how much he should set aside to pay his bills (which are requests for money presented in “bill form” from our deluge of junk mail).  But on the other hand I see him forgetting that he lives in our house asking me, “When are you going to drive me home?”   In the real world I know that he won’t get better and with each day he will get worse, but it’s nice to hear encouraging words from people who care like Diana and Jayne — and so many others.  Thank you friends.

Originally posted 2009-05-02 05:42:54.

ALZHEIMER’S AND A MELTDOWN

baby possum

Even a tiny possum can cause a big meltdown.

The wicked witch in the Wizard of Oz had a meltdown.  One splash of water and she was gone like my grandmother’s spit on a hot iron. Now that’s what I call a meltdown.  No, I haven’t had anything like that and I don’t mean to poke fun at an extremely serious medical condition. Perhaps I’ve wanted to collapse a few times and let them take me away. If only there had been more time, and I needed the respite.  But the days are always lacking in enough hours to get the necessities done and over.  Having a meltdown is not nor has it ever been on my to-do list. Continue reading

Originally posted 2013-10-20 04:55:06.

IGNORANCE IS ALIVE AND WELL

June 29, 2012 – I cried today for Virginia even though we’ve never met.  If she and I were close enough I would

Caregiver crying

No matter what caregivers do, sometimes it’s not enough. It is important to not feel guilt for circumstances beyond one’s control.

have put my arms around her and we would have cried together feeling the despair, the anger and the guilt. I suppose I cried for humanity as well, for its ignorance and for all those who are afflicted with any of the diseases found under the Dementia Umbrella.  I would have cried for the countless numbers of caregivers because it’s the caregivers who feel so responsible living constantly with the “burden” of that insurmountable weight of accountability, and the awful smothering blame we feel when something goes wrong.  What happened to Virginia’s husband James was terribly wrong. Continue reading

Originally posted 2012-06-30 04:37:53.

CAR KEYS AND GIVING THEM UP

car keys

Giving up the driving privledge can be difficult for some Alzheimers’ patients.

Rose had stopped driving on her own volition relying on Nick’s ability to see that the two of them got to whatever destination was necessary. She made a list of needed groceries and told him he could do the shopping as well.  Forgetting to refer to the list, his selections alone should have tipped us off that he wasn’t thinking sensibly.  More often than not he came home with what he believed to be essentials: peanut butter, bananas, milk, bread and Sweetie Pies.  The pies, consisting of a large 3” cookie covered with a marshmallow of equal size and held together by dipping the treat in chocolate, had become his favorite dessert.  Sealed in individual packets of cellophane, his choice came 12 to a box, and he always bought two boxes.

That all changed when his driver’s license came up for renewal.  He didn’t do well with the written test, but the examiner believed his reading skills might be off, so the test was given orally.  He passed, but for his age he was required to take the mandatory driving test.  He didn’t think it a problem, but asked Ken to go with him.  Alone in the car with the examiner, he made a poor choice resulting in a near accident.  “Stop the car,” bellowed the examiner.  Shaken amidst honking horns and cursing drivers, the examiner drove Nick back to the DMV where Ken was told, “Your father is not capable of driving a car.”  Nick was outraged, insisting he had been tricked.  “The examiner was prejudiced against me,” he lamented, “because I’m old.”  His anger, however, didn’t last more than a week or so when he found that I would drive him and Rose anywhere they needed to go.

It all came together about the same time: their growing list of needs and my availability.  Nick still liked to do the shopping, but with me by his side, we bought a lot more “real” food which Rose continued to cook, but he still was allowed his Sweetie Pies.

Later, at another time and place I found that relieving my mother, Irene, of her driver’s license posed no problem.  Like Rose she just stopped driving, allowing the license to expire.  Dad was the driver and had been for years.  Always a one-car family, he took it to work and she used San Francisco’s public transportation or walked during those mid-life-plus years. She applied for a license only when they moved to Northern California’s Sonoma County.

It wasn’t as if she didn’t know how or had never driven a car.  In the farmlands of eastern Utah Irene had cranked and bounced their old truck over mountainous, rutted roads without hesitation.  It was city traffic which kept her in the passenger seat.  After their move to a more peaceful landscape, and knowing her capabilities Dad insisted she get her license.  He was not happy about being her chauffeur whenever she wanted to go somewhere.  Country living did not provide the same transportation convenience she had enjoyed in the City.  A little study and a little practice and my mother earned her license, driving herself when my father couldn’t – or wouldn’t.  It was as simple as that, but after several years of additional age and recuperation from a broken hip she decided her continuing to drive just wasn’t important.

I’ve always been grateful that family, which included me, didn’t have to be the bad guys when it came to taking away the car and the car keys from any of our parents. Even at 88 my father (who had no sign whatsoever of AD) handed me his car keys because my driving both of them answered all of their needs.  Willingly, he surrendered the keys, but not the car.  We always traveled in his big, roomy Chrysler which, next to Mama, was the love of his life.

Sometime before Ken was diagnosed with AD there was a close-call incident for us and three pedestrians which gave me cause to question his driving responsibility and understanding of the laws – let alone common courtesy.  He needed to make a right turn.  We had a green light and so did the three pedestrians who were midway through the cross walk.  Rather than wait until they were safely on the sidewalk, he right-turned in front of them allowing less than three feet of space between them and our car.  They filled the air with well-deserved profanities. His reply, “Stupid people.”  After I closed my shocked mouth, I reminded him they had the right-of-way.  “I had the green light,” he snapped.  “So did they,” I returned, “and you know the law: The pedestrian ALWAYS has the right-of-way.”  That led to a ridiculous debate about jay walking and all of the other possibilities where the pedestrian was still in the right when it came to an automobile vs. a human being.  We argued until we reached that moment of agreeing to disagree, but his change in attitude was troubling.

The entire episode had surprised me because if anything, Ken was a good, courteous and responsible driver with quick responses.  I suppose in retrospect I should have listed the incident with the other occasional happenings which were proving to be more and more suspicious.  In my heart of hearts I knew that Alzheimer’s disease would be part of our future, and I needed to begin thinking about how he would respond to having his car keys taken away.  Furthermore, how would I manage the dirty deed without making him furious with me?

Actually, the surrender of his keys was very smooth.  Once diagnosis was made, our neurologist said that he must report his findings to the DMV.  He did. Three months later Ken failed the scheduled written test so miserably the driver’s test was disallowed.  Shortly thereafter, we had a follow-through appointment for a personal interview where a final and absolute decision would be made.  Ken was asked many questions; some having to do with driving, others just about the world and life in general.  In conclusion, the DMV examiner stated, “I’m sorry, Sir, but you shouldn’t be driving.  Your license is revoked.”

Ken, the affable person he always was, reached over and shook hands with Mr. Spoiler wishing him a nice day.  Ready to cry, I turned and left the room.  Disappointed and furious at hearing the decision I was angry with everything: the world, the examiner, his biased questioning, the DMV, life and its unfairness, the rainy weather, the negatives that came with getting older and Alzheimer’s – and the list went on.  I suppose much of what I felt was the weight of overwhelming responsibilities which were falling on my shoulders one by one.  Now I had to be the driver in addition to everything else.

Time, they say, is the great healer.  As Ken’s disease became more and more evident, I realized that I was grateful that Mr. Spoiler and the DMV had, once again, been the bad guys in taking away his license and car keys – his privilege to drive — having spared me telling him that he was no longer capable of operating an automobile.  How does one tell their loving husband, or their mother or father who have become victims of these horrible mind diseases that they have become incompetent, useless, bungling, inept, ineffectual, unskilled and are no longer of value?  You don’t.  Of course you don’t.   Instead, you just take possession of the keys and remind these same exemplarily people who were once so amazing, so talented, so wonderful, so needed and so full of life – who had contributed so much to our society — that they are still cherished, respected, and most of all – they are loved.  And you tell them often – even when you believe they no longer understand or hear what you are saying, you keep telling them.

Originally posted 2011-06-26 04:51:05.

A FATHERS’ DAY GIFT FOR DAD

Father's Day gift

Most times the best present of all is a visit from a loved one.

“What should I get for Dad?” seems to be one of the most-asked questions falling from the lips of all children whether they are adults or still youngsters.  I recall Ken asking his mother, Rose, what we could get for his father as the arrival of either his birthday, Fathers’ Day or Christmas popped up on the calendar. I wasn’t any better with my dad.  The needs of these two men were next to nothing – minimal – and even minimal was too much.  They had everything they wanted and if they wanted or needed anything else, it seemed they just went out and bought it.  So much for gift ideas!

Nevertheless, we tried, and our children tried.  We might upgrade Dad’s hammer or get a new set of screw drivers, but how often could we do that.    Ken’s father was so funny about gifts.  He loved having us congregate for his birthday and other special occasions or for no occasion at all. But on present days we wanted so much to find something special for him; something he would remember and enjoy – from us.  Nick was an appreciative man, and when he opened our gift we were certain we had selected the perfect item.  Gushing with enthusiasm, he held it up for all to see exclaiming loudly, “Thank you very much.  Thank you very, very much.”  And he was sincere.

He blew out the numerous candles on his cake, and then Rosie served slices of her yummy chocolate confection with ice cream and 7-UP for all.  He was the life of his own party even if they were always the same. 

Lovingly, he would stand at the door as we left expressing how much he appreciated our coming and thanking us over and over for the gifts.  Then he would say to one of the older boys, “Why don’t you take this home?” handing him the after shave lotion which was the gift from Loretta.  To Ken he offered the screw drivers our children brought, and Loretta got the hammer. “Please,” he coaxed, “take these home.”  Now we, the guests, were the ones saying, “Thank you.”  Every gift-giving session with Nick ended in the same way.  “And thank you too,” we all called back relieving him of his just-opened presents. It was useless to object.  No matter what we brought to him, he gave it back to us, or to one of the other guests.  We all just shook our heads and laughed.  I suppose the gift he wanted most, and received, was having his loved ones near: our presence was his present.

My father wasn’t much better although he did keep everything.  He was a handyman so he used the tools, but when they moved and we cleaned the medicine cabinet we tossed the old after shave lotions with the seals unbroken certain the fragrance was long gone – or worse – drastically changed.

Ken was different, truly loving everything given to him.  His interests and collections covered many bases.  A kid at heart, our children and grandchildren knew they could even buy him toys, which the children were allowed to enjoy, but only with Grandpa.  Furthermore, he never gave any of them back.  He was not like his father.  Having once worked for the railroad he was the recipient of a phone shaped like a train locomotive, a miniature train and railroad station which in reality housed a clock announcing the hours with train whistles and a conductor shouting, “All Aboard.”  Grandpa was showered with trains of all gages from “N,” and “HO,” all the way up to match the train he had as a boy. The shelves were lined with miniature cars, trucks, semi cabs with trailers, and heavy equipment.  As a Navy man Ken enjoyed the tiny replicas of WWII battleships, cruisers and PT boats, “The Lone Sailor” figurine standing watch, and to hold up a section of Navy books our son had given him anchor bookends.  One year I asked our daughter-in-law Peggy to finish a hooked rug bearing the Navy seal which Ken had started but never finished — being the great procrastinator.  She did, and he was thrilled as we hung it on the wall. Ken even let everyone know he collected teddy bears.  His home office was the envy of all the grandchildren looking more like a shop filled with collectibles than a serious spot where the man of the house wrote monthly bills and figured his taxes.  After all was said and done I found it to be an endless chore to clean, and a pain and a half to dust, which I did, but only if and when Ken was willing to help.

He also enjoyed new shirts, new wranglers and new ties.  His first gift tie came from our daughter, Julie, when she was 9.  With white-elephant donations through the PTA and a two-day sale, the children were able to purchase affordable gifts for dad come Fathers’ Day.  Selectively, Julie chose the prettiest tie in the whole lot — a wide, hand-painted number sporting a garish Hawaiian sunset that was certain to blind onlookers.  He wore it all day — even to church.  “Nice tie,” commented the brethren – knowingly — “Fathers’ Day gift?”  He nodded and they all smiled.

As Alzheimer’s took his mind, it also took his happy spirit, his joy, and his sense of humor.  His curiosity about a colorfully wrapped package slowly ebbed until there was no longer any interest.  Even the greeting cards that were enclosed are now without meaning – just something to look at and toss aside.  So here it is again: Fathers’ Day, and the question still arises, “What can I get for dad?”

Whether it’s Dad’s Day, Mom’s Day, or Aunt Elaine or Uncle Tony’s birthday, or anyone else’s special day who is stricken with any of the vicious mind diseases the answer is usually the same.  “He/she really doesn’t need anything,” or the caregiver may say, “How ‘bout some new sweat clothes,” realizing the uniforms of the day are looking a bit shabby.  The only real need the victims may be aware of is a need to be fed when they feel hungry.   A plate of cookies brings a sparkle to Ken’s eyes and he might say, “Those are mine, thank you.”  So cookies are always a good gift, or candy; both can be rationed if there is a health problem.

Other than sweets and treats one suggestion as the best of gifts for the afflicted, and the caregiver as well, would be time – your time – time in the form of a visit given by friends and time given by family.  Not a lot, stay for just a little while and then you can leave, but please come again.  From what we, as caregivers observe AD has stripped their memory of everything once held near and dear.  Ken’s face is usually a blank wall as he stares up into the face of a visitor.  Perhaps, he may shake hands – or not.  Typically, there appears to be no recognition, nor does he make much of a comment as he did during the earlier stages of the disease.  At times Ken is chatty, or he may ignore the visitor altogether, or take a nap.  There is no “best” time for a visit.  Most of the day he is unpredictable; at times dozing off while the visitor sits nearby wondering what to say next.

Later, though, after someone has come and gone, and toward the end of the day Ken seems a bit calmer, more pleasant, happier if that’s still possible.  Prehaps deep in his soul the voice of the “stranger” works its way through the slime covering the brain and settles in a place that brings him the most comfort: in his heart where he may feel the reassurance that he is still cared for and loved.

Originally posted 2011-06-17 19:17:10.

MENTAL ILLNESS: A REALITY

dead tree

The bleak reality of a dead tree can compare to the desperation of mental illness which can leave patients and caregivers filled with unbearable sadness.

Since the beginning of time there has been evidence of humanity’s battle with mind disorders with very little being done about it other than placement of the ill in insane asylums.  Inmates were treated not much better than wild animals with horrible, unspeakable atrocities performed in an effort for institutional control.  Ignorance abounded up until well through the last century with the mind still a mystery and most medical people, caregivers and family categorizing the victims as just plain “crazy.” It’s only in the past 50 years that the medical community has made even a scratch on the surface of what ails the brain.

As citizens of the world we have a long way to go in accepting the fact that mental illness is an illness.  In my humble opinion, we in the Alzheimer’s community, or I should say we who have loved ones under the Dementia Umbrella are a little more aware of mental illness than many – at least in our little corner of this colossal disorder.  Like cancer, there appears to be as many varieties and degrees of severity of being mentally ill as fish in the ocean.  What’s unfortunate, if that word is appropriate, mental problems don’t show in the same way as, say, a broken arm, chicken pox, a black eye, a surgical procedure, or poison oak, and when we see that someone is sick or injured, we are immediately concerned and sympathetic, usually asking — sometimes shrieking– “What’s wrong?” or “What happened?” 

When I watch my husband as he sleeps, he looks just like the Ken I have known most of my adult life even though he is in the advanced stages of AD.  For all outward appearances, he is the same person he has always been until he awakens and you engage him in conversation or touch him without notice.  It’s then you recognize something is very wrong.

 In the early stages not everyone knew Ken was ill, even in the middle stages his AD often went unnoticed in casual settings.  All the while his brain was being covered with slime and abnormal structures known as plaques and tangles which are a buildup of deposits of a protein called beta-amyloids, but no one can see the damage this activity does to the nerve cells.  He is ill, but the illness is invisible. There was no bloating, no swelling, no water retention, no pain, no rash, and no sudden weight loss. 

Family and some friends have known about Ken’s AD right from the beginning, and we continued with our social life never feeling any rejection or that we didn’t belong.  I have been blessed with support from many, but that’s not always the case. AD and other mental illnesses still carry a stigma often manifested with family embarrassment and apology, denial, intolerance and skepticism if not down-right disbelief that a sickness exists.  Mental illness is far more extensive than what lies under the Dementia Umbrella.  Other troubled victims suffering from any number of mental disorders can be dismissed, even by those who are close, with remarks such as “Grow up.” “You would feel better if you tried.” “Forget it.” “Let it go.” “Get a grip.” “You can remember if you make the effort.” “You’ll be all right.” “Quit whining,” and often the topper, “Get over it!”

The Oprah Show has done a wonderfully informative service in presenting various examples of  mental illness, particularly people in depression.  Caught on tape by her rescuer’s police car, one woman was saved when the officer grabbed her arm as she went off a bridge, her momentum nearly pulling him over the side with her.  Fortunately, another officer, who had just arrived on the scene, was able to hold him while the two pulled the intended victim back to safety.

Months later, as Oprah interviewed the woman and they viewed the tape, the survivor, so engulfed in the blackness of depression at the time, remembered nothing of her attempt to end her own life.  She had no idea how she even got to the bridge, although she had been told she drove herself.  There was no memory of getting into the car, getting out or climbing up on the rail of the bridge. In therapy and healing she lived to appreciate her husband and family, and to thank the officers who pulled her from the brink of death.  Dying was not what she wanted – only help.  That’s what most of those suffering from mental illness want.  All the while they are grasping and wallowing in despair, they are crying out for help even though they resist.  I was able to share that Oprah episode with a friend whose despondent daughter, to all appearances was happily married and the mother of a 7-year-old, was pushed over her edge with unrelenting pain into black depression.  She was not rescued.

Years ago I had read that if someone talked about suicide, they wouldn’t do it.  It’s my understanding that the thought is different today.  If they threaten, it needs to be reported to their doctor because such a threat is very real and possible.  As I have mentioned before I am not a medical person, but I do relate to mental illness and the complex mystery of the mind, no doubt because of Ken, his parents, my own mother, and for a short time Auntie Mary.  It is out of concern that I offer my thoughts about what I observe and read.

While perusing an article from the “Alzheimer’s Reading Room,” I was troubled (which prompted this post) when I read about an Alzheimer’s patient being arrested and put in jail.  He and his wife live in Winnipeg, Canada, our neighbors just north of the United States boarder.  Bob’s wife, his full-time caregiver, had been showing him a family photo housed in a metal frame in an effort to stimulate his memory.  Not recognizing her as his wife, Bob pushed the supposed intruder away.  She fell on the corner of the frame causing a cut on her chest requiring a hospital visit and 8 stitches.

At the hospital, police were summoned. The disoriented and confused husband, was examined,   given a medical clearance, arrested, charged with aggravated assault and jailed where he languished for more than a month despite the family’s protests.  Eventually, the media exposed the problem and intervention for his release from prison was made by a local politician

Authorities made the stipulation, however, that 69-year-old Bob not be allowed to return to his home under the care of his wife, but must be placed in a government-designated care facility.  Reluctantly, the family agreed. Bob was transferred to an inadequate care facility (inadequate in that the personnel was not trained, nor was the facility equipped for combative AD patients).   Unsupervised, he attacked another patient.  The older patient, an 87-year-old man, struck his head in the fall and was seriously (if not fatally) injured.  The family of the older patient was outraged insisting that Bob should be in jail and politicians should mind their own business.

The comments below the “Reading Room” article were a consensus:  Tragic.

Mental illness is tragic – no matter what form it takes.  AD is tragic.  The death of my friend’s daughter is tragic.  Suicide is tragic.   

I can see the cast on a person’s leg, the rash from poison oak, the fading yellow-purple of a bruise, scabby dots from chicken pox, the stitches of a surgeon following an operation, the weepy, even blood-shot eyes from a common cold are obvious, and I have felt (and seen) the devastating almond-shaped lumps from another friend’s terminal cancer; tangible evidence of physical illnesses we can see and sometimes touch.  We show our concern, our love and reach out to comfort and help those who are sick or broken.  Yet, we can be so unbelieving and distant when it comes to mental illness.

Right at the beginning of Ken’s AD, our younger friend, who helped us with yard work was, for a time, doubtful about Ken’s illness.  I don’t recall what Ken said, but Steve’s puzzled response was, “He’s putting me on.  Isn’t he?”  So normal was Ken’s appearance – looking robust and healthy — that what he said had seemed to be a joke – faking — unreal.  That combination of real and surreal somehow clouded the seriousness of his embryonic illness – making it appear suspicious – an act.  A remark from a sick mind coming from a healthy body was beyond comprehension.  Yet it was true, and in the same way other forms of mental illness are often viewed with cruel skepticism.

Probably, everyone has felt depressed at one time or other, but with a healthy mind it’s temporary.  Caregiver’s, especially the spouse caregiver, also experiences this kind of sadness and depression from time to time.  It’s when that depression continues with no relief over a long period of time that it becomes what the medical community terms “clinical depression.”  Danger: the victim needs professional help. Numbers of people suffer from depression and countless other forms of mental disease, and it’s all very real even if it can’t be seen.

 In any event, we, as part of humanity need to be more aware and more understanding of our fellow human beings as they are pulled into the many illnesses which plague mankind.   When we reach for their hand it should be for assistance through whatever misery they might be experiencing.  No matter what the illness – physical or mental — the words from our lips should always be, “What can I do to help?”

Originally posted 2011-04-04 03:55:27.

THE DEMENTIA UMBRELLA

 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.

Originally posted 2010-08-30 02:10:43.

ONE SIMPLE PHONE CALL

Changes in our lives can come slowly, or they may hit us like a ton of bricks. A severe accident can cause one of those changes. One poor decision by one person alters lives forever. My name is Deborah Schultz and I am Ann Romick’s daughter. I had just sat down to work on some uninterrupted late night web marketing, when my cell phone displayed a phone call with a hidden number. I generally make it a policy not to answer 800 or blocked numbers, but this was almost 10:30 at night, and for some reason it just seemed urgent.

“Hi Debbie, said my sister-in-law, I have some bad news.”

One simple phone call and a shattering message. My parents had been in a horrible car accident on the way home from grocery shopping.  Sideswiped by a drunk driver their SUV spun in a three quarter circle.  My dad was okay they thought, but my mom — broken neck vertebrae, pressing on arteries, possible stroke. How do you feel when you are 800 miles away with information like that? Shocked, frustrated, totally helpless. Immediately, I wanted my husband to drive me to the airport, but with a 16-year-old dependent niece living with us, several rental units and important doctors appointments,  it wasn’t possible. My siblings told me they had things under control, and to sit tight. I did call my 21-year-old daughter who happened to be driving by the hospital at the time and she rushed over for me. Again, the news was not reassuring, especially the descriptions of my Alzheimer’s father and his response to the disorientation and chaos, and the critical condition of my mother, his only caregiver.  It was a sleepless night.

The next day was a little more reassuring. There was no paralysis, no concern of stroke, but her lungs were filling because of her broken ribs, while my father, with only minor injuries was being transferred to another hospital for further tests and observation.

The prognosis for my parent’s recovery proved to be excellent, but the disruption in our lives is immeasurable. My brother’s and sister and their spouses keep a constant vigil with a family member with her at all times in ICU. My father spent five days in a hospital, back on the medications that his doctor had prescribed. Those same medications my mother had just taken from him because of the side affects she discussed in her last blog.

Except for one brother, all members of my family are self-employed entrepreneurs. We don’t get leaves of absence, or emergency family leave. We put aside the jobs that provide for us and plunge head first into what is most important: our family. Our personal lives are disrupted and our spouses make do, single-handedly running our team effort with faith that it will all work out, and so far it always has.

For the time being, and with lots of support, I have assumed the role of caregiver for my father.  Determined to keep my father at home for as long as possible, my mother has spent too much of her life working toward that goal for us not to continue supporting her.  His father, my grandfather, was placed in a care facility when the time became evident. He ended up having a heart attack three days later because a worker at the facility manhandled him into taking a shower. We do not want to go there, but how long we can keep up home care under the present circumstances remains to be seen. We know that before the accident, my father walked and fed and dressed himself and was generally in good physical health. A five-day stay in the hospital, with a catheter for hospital convenience, has resulted in a bad urinary track infection, a weakness in his legs that now requires a walker, and a new need for Depends. Will his condition improve? We don’t know, but we had to insist that he be checked out and finish his recovery at home. Who knows how much sicker he would have become had we left him in the hospital.
What caused all of this expense, pain and disruption? Selfishness. Someone sat on a bar stool and drank all that Monday afternoon. Someone didn’t think it would be a big deal to drive even though their blood alcohol level was way beyond legal. Someone didn’t consider how one bad decision could have such enormous repercussions.
My mother’s loving ability to care for her beloved husband has probably ended. But this blog will continue to go on, perhaps not about caregiving and Alzheimer’s, but about the exquisite stories of family and love which she will continue to write. Her advice comes from years of living, through both the good and the bad.  Even now she remains compassionate, caring, cheerful and determined.  Still in ICU she ran her fingers over an imaginary keyboard to make sure they still worked.   And her brain is as sharp as ever. Though she may need to rest and heal for a while as recovery continues, she will be back.

Originally posted 2010-02-28 08:18:22.

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