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Archive for the ‘cousins’ Category

Or perhaps I’ll call it The Fourteen Days of Christmas.  Today, as I am writing, it is January 6, 2011, a little off my usual schedule because we’ve been celebrating a long Christmas, but now it’s over.  And you know what?  I really like Christmas spread  o  u  t,  taking as much of  December as it needs.

If you are among the generations of through-and-through Americans whose big days are Christmas Eve and Christmas Day your holiday ended at midnight, December 25th, just as ours did before this year.  Craming so many celebrations into such a small space of time, it would seem the date was more important than the day.  After weeks, and even months of preparation Christmas is over in a flash, and now it’s gone for another year. The jolly old elf, his reindeer, and all of his helpers are taking a well-deserved rest, and that includes moms and dads everywhere.

However, if you don’t live in the USA customs for the celebration of the birth of our Lord, Jesus Christ can be different, and are actually more in keeping with the authentic event than all the frantic madness we impose upon ourselves. 

Don’t think I’m a Scrooge grumbling “Bah-Humbug” through this wonderful season of merriment and joy. I’m not.  I love Christmas, the carols, the cards, the parties, the well wishes and even the shopping.  And more; before AD, Ken and I so looked forward to driving through the neighborhoods seeing the decorated homes, malls and the beautiful displays on the grounds of churches everywhere, especially the live nativity scenes where we could let our imaginations go and become part of what occurred more than 2,000 years ago: the birth of a tiny baby whose life and teachings have changed the world.   Yes, Christmas is a beautiful and unique celebration – and different – as we all know elsewhere in the world.

My family and friends who have close ties to Mexico tell me that it is January 5, when the children leave their shoes out to be filled with gifts – not their stockings, but their shoes – and gifts not coming from our white-bearded friend – but from the Three Wise Men who arrive on January 6.  Think about it; isn’t the tradition of gift giving at Christmastime based on The Three Wise Men who traveled from afar bringing the Christ Child gold, frankincense and myrrh as they worshipped the New Born King?

Leading up to the 24th and 25th of December there are posadas and celebrations where loved ones reenact the blessed event, with Christmas Eve and Christmas Day being a more reverent time.  But no matter what the custom or tradition, it is a joyous celebration for Christians everywhere.

This year I have found wonderful flexibility in December.  Perhaps taking a bit of the customs from south of the border.  Singing The Twelve Days Of Christmas, while being a delightful carol, sounds a little much for me.  Who needs all of those maids amilking and noisy French horns?  But 14 days of Christmas with some light festivities, and then a few days of rest in between parties is perfect.  When Ken was well, it was tradition to spend Christmas Eve at daughter Julie’s house, Christmas morning at our house, and Christmas afternoon at grandson Sean’s house.  It seemed we spent as much time in the car as we did with family.

Ken no longer travels well, so I declined all invitations to leave our home.  “Then we’ll come to your house,” said Sean.  “What evening would be good?”  I gave him a date and beginning the Tuesday before Christmas we dined and relaxed with those who could attend, and then opened gifts with no rush in having to get the kids home and in bed, or dropping someone off at the next stop.  A few days later we did it all over again with other members of our family.

“How joyful it has been to spread out the Holiday,” I emailed our cousin, Penny, whose family has also multiplied over the years, living in various parts of Oregon.    She agreed, saying  they also spread the Holiday over several days, commenting on how well it has worked for their family.   Christmas Day can be any day we choose.

If any of these changes mattered to Ken it’s highly unlikely.   He no longer has any curiousity or interest in brightly wrapped gifts, decorations, or colorful lights, and has no understanding of the holiday.  But always a social person, he still seems to enjoy having people around him, and especially the little ones.  Our last Christmas celebration was Monday evening with daughter Julie, husband Tim; son John and wife Marisol, and their two little ones, Joaquin and Maya.  The eight of us represented four generations, and when Ken looked at four-year-old Maya, seeing her beautiful brown eyes and dark hair, he exclaimed, “What a little doll.”

With no memory of who she is or where she fits into this vast puzzle we call family, Alzheimer’s has not taken away his appreciation of the beauty of children, and for that I am grateful. 

So after all is said and done, the gifts opened, hugs and kisses for everyone, and the last guest drove out of sight what did we get for Christmas?  The best gift of all:  Family and friends – in and out of our home — bringing their presents and presence, giving us their gifts of time and themselves.  Who could ask or want for anything more?

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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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Carved pumpkin

Pumpkin carving, a Halloween tradition.

When my kids were at home it was their job to carve the scary faces on the pumpkins.  I also had them scoop out the “flesh” of fall’s bright orange squash so I could make pumpkin pies.

Now I cheat.  A couple of ceramic pumpkins already wearing carved faces and placed on a plate with a candle inside does the trick.  What’s more they look every bit as Halloweenish as did the real thing.  Well, maybe not quite so much.  As my in-house experts advanced in years their talents increased exceedingly.    Using the most humble of kitchen knives and scoops with utmost proficiency the more ghostly the carved pumpkins became as the artists scraped out more and more of the pumpkin flesh making the shell creepily translucent.  While I do miss the activity and the main fresh ingredient for pies I get along very nicely using the old standard:  Libby’s pumpkin in a can.

Meanwhile, I find I enjoy this holiday more now than when the house was filled with our children.  There was always so much hubbub in getting costumes ready – not only for the big night – but for school and other celebrations:  costumes on – costumes off, this party that party, costumes on – costumes off.  Then it seemed, in the past, that day-light-savings time never cooperated, switching back to standard time the week before Halloween making it really dark at dinnertime (even when eating was bumped up to 5:00 p.m.).  Chaos reigned trying to feed kids a bit of real food before they hit the neighborhood for candy while we ran back and forth answering the constant demand of the bell as early trick and treaters opened their pillow cases for the required ransom.

Kristina, the granddaughter who lives with us, loves Halloween.  At 22 her sites are no longer on dressing up for treats.  It’s been fun for me watching her get ready for this bedecked and bejeweled holiday.  She found a saloon girl dress at a vintage shop in Santa Curz and spent the last few weeks acquiring the accessories to make her costume complete.  Her young man, also Chris, found chaps transforming him into the needed cowboy to escort his “Lady in red” to various parties.  A really fun holiday and I didn’t have to do anything but watch, although I did help her with a minor alteration.  And I am totally prepared with a cauldron full of candy for the night visitors.

Living with Alzheimer’s I am determined that life will be as normal as possible, so I continue our celebration of All Saints Eve.  Decorating is simple, but effective.  I like the orange candy lights which I scatter over one specific juniper bush.  Towering above, is a ghost made from two sheets ruffled over a couple of pieces of wood stuck behind the lights in the same bush, and for the head a very large,  round light globe salvaged when an outdoor fixture was replaced.  Easy up, easy down.

For a few years, even with his disease, Ken helped, but often took down the decorations each morning not remembering the holiday was yet to come, so together we would put everything back in its place. This year there isn’t much notice from my husband.  It’s almost as if he looks, but doesn’t see.  A tall ghost surrounded with small orange lights means nothing to him as he gazes out of the front window, but I continue with tradition not only for me but for our numerous great grandchildren and Jessica, our youngest granddaughter who is 11 and blends right in with her cousins of another generation.

This morning as Ben and I were getting Ken ready for the day he looked at me with disdain as I held his restrained hands while Ben did the cleaning.  “You don’t know anything,” he growled giving me a “duh” expression.  His contorted face made me laugh out loud.  Ben looked over and laughed as well.  Ken continued making faces finally sticking out his tongue like a naughty five-year-old boy.  “Why are you making those funny and scary faces?” I asked, still laughing.  Ben looked again and said, “Faces he probably made as a young boy.”  Stopping my giggles I asked my husband, “Are you getting ready for Halloween?”

On Halloween night, later in the evening, Jess will pay us a visit with her mom and dad.  She will be wearing a surprise costume which her mother made especially for her.  Perhaps Ken will show her his little-boy faces even sticking out his tongue, and then add a few scary ones – or not.  More than likely he will be unresponsive.  However, in a pretend perfect world he would be just Grandpa looking at her with love in his eyes – remembering who she is, who she was and anticipating, with all of us, who she will become – saying something like, “You are a beautiful fairy princess, Jess (or an awesome Darth Vader — whatever the costume) and  I love you.”

So this Halloween when unseen visitors from the past make their presence known, when witches fly through the air on  broomsticks, or  ghosts and goblins dash about the streets disappearing over the hills and unexplained apparitions appear from no where, perhaps the real Ken will be allowed to sneak away from the prison of Alzheimer’s and be just plain Grandpa – for a time.  Stranger things have happened.

We can only wish.   Maybe someday we can catch that very first magical evening star to wish upon.  If it’s the right one, wishes are  supposed to come true.

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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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Ken and I have always been available to “borrow” one of our grandchildren when their parents have a date night, so when our son, Keith, and his wife, Sabina, asked if Jessica could stay for the evening I agreed without hesitation.  She is 10, their only child and our last grandchild.  It would be a lonely place for her in our large family with a decade or more between her and the next youngest of her generational cousins except for the fact that many of them have children of their own, some older than Jess and some the same age, much to everyone’s pleasure.  For her, a cousin is a cousin no matter what the generation.

Jessica always comes with her own supply of things to do: puzzles, books, art equipment, cards or board games.  A few years ago the three of us played “Fish” together.  Grandpa Ken was able to match the cards and we were all very competitive.  This visit she brought “Sorry,” and it was just the two of us who played.  Simple as it is, Grandpa has no interest in playing games, nor do they make any sense to him.

He was, however, pleased to see Jessica even though he doesn’t remember who she is, neither does he remember her father.  When company is here, though, Ken often feels duty bound to carry on a conversation with the visitor.  Noticing him standing in front of the 10-year old, and looking a little formidable as he spoke, I moved behind him watching Jessica’s sweet face.  Ken’s voice was on the serious side as the sentences fell from his lips, complete in form, but untied to the following thought, if there was a thought behind what he was striving to communicate.  Jess looked up at him with an equally serious face, her brow furrowed; head cocked to one side, her lips pursed a little, more in puzzlement than getting ready to respond.  Not wanting to cause her discomfort, I asked Ken if he was still watching TV.  Distracted from saying more, he returned to where he had been.

“Has your dad talked to you about Grandpa’s illness?” I asked.  Ever the little adult, she answered, “Yes, he talks about it sometimes, but it makes him depressed.”  “I know, It’s very sad and it makes us all depressed,” I answered not wanting her to be burdened by adult problems, but her grandfather was “different,” and she needed some explanation, and is doing well in her understanding.  I smiled at her loving compassion about her father being depressed.

So, there it is:  “DEPRESSION” big, bold and bad in quotes and caps: the dark shadow constantly lurking in the corners of our minds — poking and stabbing at the continuing sadness griping our hearts.  Obviously, the question here is, “How to keep the ‘Big D’ in its place; to keep it from taking over the lives of our family — and mine?”

At a group meeting on depression, a family therapist suggested taking lots of hot showers.  And that works, but it’s impossible to spend a life time under the shower.  My best fight against depression is by living as “normal” as possible.  If a friend calls and wants to come for a short visit, I respond with, “Please do,” no matter how blue I might be feeling.  When he/they/she leaves, I feel better.  The same applies if we are invited to dinner, we go even if it takes trickery to get Ken out of the house.  If my AD husband is in a Ken mood, I’ve been known to stop the vacuüm cleaner mid-floor, get our coats, get in the car and take in a movie, go to the Mall, take a walk, visit a friend, or an ailing person in a rest home or hospital and I feel better and less depressed.  The big bonus is that Ken “is” better as well.  In other words, invite people into the house or get out of the house as often as possible.  Strive to be “normal,” whatever that means.

However, we all acknowledge there are no guarantees for daily visits and getting out is not always possible.  That’s when I find something for me.  I write, I sew, I am artistic, I have a dozen projects unfinished, and weather permitting there are weeds to pull, plants to prune and gardens needing care.  At times I can coax Ken into sweeping walks or picking up cuttings.  In two words:  keep busy.  Is it easy?  Never!  The most difficult part of doing anything is beginning, which often takes more of an effort than the task itself; especially when depression’s tempting invitation to come and sit by him on the couch and brood is so simple.  Battles are never easy, and fighting AD is a battle, especially with its most cunning collaborator: depression.

Jessica set up our board game and I finished a few chores, then the two of us played “Sorry” while Ken watched TV.  We were all content.  Depression remained in its dark corner — until some other time.  And Jess — she beat me three times out of five — and she wasn’t even sorry.

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