FALLING DOWN AND GETTING UP….

Ken fell the other night about an hour after Ben left, and it’s not the first time.  I have the evening/night shift, and usually it goes very well, but Alzheimer’s and its ramifications are most always unpredictable.

We had been watching TV and I went into the kitchen (not 12’ feet away, but around a snack bar and out of sight) to prepare a light dinner.  I looked back in a few minutes to where we had been sitting on the couch and he was on the floor.  He didn’t cry out or make any noise as he fell, nor did he appear to be hurt.  I asked him if he was all right.  Growling at me, he intimated it was my fault, but then everything is my fault.  I encouraged him to turn around and get up on his knees.  If he could do that I could help him get back onto the couch.  After making several attempts he was still in the same position on the floor with him becoming exceedingly agitated.

Knowing Ken wasn’t going anywhere, I stepped out to the front porch surveying the nearby houses to see which of the men might be at home.  Three houses down and across the street I could see Robert working in the garage.  “Sure,” he said, “I’ll be glad to help you with Ken.”

Entering the family room with Robert we found Ken sitting back on the couch.  “I have no idea how he got himself up,” I explained to my neighbor, “but he’s fine.  Thank you so much.”  Robert went back to his work and I continued with dinner.

The fact is evident: older people often fall, and people with AD often fall, which Ken has done many times.  But the full fact is that just about everyone has taken a tumble or two – or more – over their lifetime, and, usually, it’s no one’s fault no matter what the age.

I recently read an article written by a Minnesota journalist regarding the number of deaths from falling in various care facilities throughout that state.  The article was republished on the “Alzheimer’s Reading Room” blog. There were various comments below with many contributors “blaming” the inadequate care, the inadequate number of employees, and the incompetence of care facilities in general.  In my humble opinion, those kinds of all-encompassing comments are unfair.

While I have my own 20-year-old horror stories about care facilities with this one topping my list:  We found my AD mother, restrained in a chair with a fitted Snap-On lunch tray holding her in place.  Her sweaty face had turned a deep red as she sobbed tears of desperation while sitting in her own waste.  We calculated she had been ignored for at least four hours on Christmas Day while the staff partied; a perfect example of blatant neglect.  However, I don’t believe that every incident, accident or fall means total disregard of a patient, or that every care facility is filled with incompetent and uncaring workers.

Nor do I believe that the aged or infirmed, once they reach that point of no return, have much of a choice regarding their physical condition.  Obviously, aging, in and of itself, is a journey of deterioration.  I do believe, though, that many older citizens, who are otherwise free from illness, can engage themselves in some kind of preventative action.

We are all aware that as both men and women grow older, they are less active and less likely to be involved in an exercise regimen where they can improve muscle quality and practice balance movements; thus preparing for what might come down the line at a later date.  Dedication to such a practice is known to also improve bone density, which can help in many health areas including the possibility of osteoporosis prevention.

Before my mother succumbed to AD, she tripped over the spread while making up the bed.  The unexpected fall broke her hip.  Following hip replacement, she breezed through therapy at 80, and then devoted herself to an exercise program which not only strengthened the muscles around the artificial hip, but greatly improved her general wellbeing – and balance.

On the other hand my father, a tall man with large bones, surrendered to painfully arthritic knees.  Laxed in thigh and leg strength exercises, his legs could not compensate when, without warning, a knee would buckle resulting in numerous falls.  For days afterward he complained that he ached all over – of course!

One day as he watched one of our toddling grandchildren tumble to the floor after taking a few steps, then step and tumble again and again, Dad said, “If I fell like that I’d be in bed for a week.”  “Dad,” I answered, “She weighs 22 pounds and fell six inches.  When you fall, it’s about 3-1/2 feet.  That’s a long way down for 200-plus pounds to hit the floor.

My point here is that from the time we begin walking we begin falling.  Throughout our lifetime, we have all taken a number of spills: some resulting in skinned knees, elbows and hands; embarrassment and injured vanity; broken arms and legs, or worse: broken hips, and if the fall is from a good distance it might break every bone in our body – or – sadly — result in death.  But more often than not falling down isn’t always someone’s fault, but rather it can be caused by any number of reasons, even slipping on a tiny patch of ice, or the well-known banana peel.  Falling is just the nature of the beast: homo sapiens – mankind – who walks on two spindly legs can be, at times, a clumsy lot.

Certainly, I’m not referring to the infirmed, ill or elderly whose every step is often an act of heroic courage; victims suffering from pain, or any disorder, including those categorized under the Dementia umbrella.  The utmost care, concern, love and compassion must be given to these tender and fading sparks of humanity of whom we have charge with the same care, concern, love and compassion that we bestow upon the babies and children who bless, or have blessed, our lives.

Admittedly, the falling of our oldest citizens is of top priority whether care is given in the home or at a care facility.  However, even at home when care is a one-on-one ratio or better, falls happen.  Statistically, we know that in a care facility a one-on-one ratio is non-existent.  For that luxury, the cost would be prohibitive.

Unfortunately, there is no sure solution to the problem of falling other than restraints placed upon the patient.  Do we want that?  I don’t think so.  I would recommend, though, that families be selective in choosing a care facility for their loved-one.  Also, be a responsible visitor.  It is a known fact that the often-visited resident in a home gets the best care, and those getting the best of care are less likely to be victims of falling.

My main concern with this issue, though, is blame.  As a nation we are so quick to point a finger, to blame, to accuse, and, at times, to take legal action.  Terminal illness is a no-win situation marked with guilt — agonizing guilt — not only for the family believing if only they had done better……, done more……, whatever……; so it is with caregivers who also experience those same self-deprecating feelings of guilt.

It has often been said that death is a blessing relieving man from endless pain or allowing freedom from a lost and tortured mind.  Accordingly, whatever happens after a fall, circumstances need to be the first point  weighed and considered. Furthermore, we should be prudent about finger-pointing; striving first to be forgiving and kind to one another, and ourselves.  If we remember to do that, to be kind and forgiving, then once the sadness mellows and everyone involved finds their own peace, we’ll all be able to sleep just a little better.

Originally posted 2011-01-17 05:13:37.

A NEW YEAR AND THE YOUNG SLEUTHS

 In some of my previous posts I’ve mentioned having to search for things — mail, keys, TV remotes and any number of objects Ken acquires and hides.  Taking and hiding is typical behavior of victims of Alzheimer’s; part of the paranoia I suppose,  and my searching continues.  I’ve noticed as his disease worsens he becomes less aware of others around him.  He doesn’t notice me standing to one side as he hides a stack of magazines under a toss pillow on the sofa   Nor is he as clever in choosing his hiding places as he once was.  Ken now has more of an “out of sight, out of mind” attitude as he tucks things away.  My detective work is much easier than it was when letters and bills were hidden in books and then placed back on a shelf.

I suppose we could say living with an Alzheimer’s patient brings out the sleuth in many caregivers, and more often than not it is a necessity.  Of course, having been a parent has been uppermost in learning subtle detective work of a different kind when rearing a family, especially when dealing with evasive teens.

However, my parental investigations, or searching for hidden objects in my own home have been overshadowed, and are nothing compared to the gumshoe work done by  granddaughter Kristina and her boyfriend Chris these past few days.

Lately, the fates have not been kind to her.  Her mother, living far away in Utah, can only console her by reminding the young woman that bad things come in threes, and if that’s true, her quota has been filled.  First of all she had a fender bender which put her car out of commission.  Second, she lost her job, and three nights ago someone broke into Chris’s pickup and stole Kris’s purse — and his brother’s backpack.  Every important paper or card she owned was in the purse, including her keys.

Alerted, I thought of having the locks changed as our address is on many of Kris’s papers, but a quick phone call from her the following day informed me that someone had found her purse with her keys still inside.

The theft had taken place a few blocks from Jack London Square in Oakland where the police took the report.  Sorrowfully, the officers concluded the crime was considered a petty theft and they had no manpower to do any follow up.  A homeless man found the purse in San Francisco and called Kris on her cell.  The three (Kris, Chris and the homeless man) agreed to meet near a donut shop off Market Street.  Rewarding him generously, Kris shuffled through the remaining contents finding several important documents missing, including her driver’s license and ATM card. 

Reporting the ATM card as stolen, the bank read them a list where there had been attempted use and refusals.  Determined to find the culprit, the two were allowed to view  tapes from the businesses where use attempts had been made, which included places in Oakland, San Francisco and Vallejo. Their conclusion:  the thief lives in Vallejo. 

“Everyone was so helpful,” said Kris, “but the tapes we have viewed so far were not clear enough for identification, nor could we make out the license number from his stop at a gas station.”  And the search continues.

Their goal is to catch him on tape swiping the card, and hopefully a good tape will show the license plate of the car.  The police have said if Kris and Chris can find that kind of conclusive evidence the accused party will be arrested.

I admire the young sleuths their tenacity and great detective work, and the fact they are still “hot on the trail.”  If there is a positive epilogue I will surely report it here.

Searching every shelf in my home, hunting through all of the drawers, and shaking books to find what Ken has secreted away doesn’t begin to compare to their diligent hard work, but despite her loss this has been an “entertaining” saga for me to share.  It tells me, once again, that life goes on even in the homes of Alzheimer’s patients and their caregivers.  And while having a young life temporarily turned topsy-turvy with some of fate’s mishaps their adventure, while frustrating for them, makes me feel “normal,” as if I’m still involved in and am part of the world out there.

My New Year’s wish for Kris is that she gets her car fixed, finds a great job, and all of her important papers, somehow, show up.  In addition, I wish for them a champion’s feather in their caps for effort – and in the end justice.  I hope they catch the bad guy.

Originally posted 2011-01-11 05:04:36.

THOUGHTS OF CHRISTMAS PAST

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?

Originally posted 2011-01-07 06:25:07.

CLEAN YOUR PLATE

Ken and I are part of the generation born during The Great Depression, and for years our title was just that:

white plate

A white plate helps distracted patients with Alzheimer's

Depression Kids.  I suppose we still are, just as “Baby Boomers” will always be “Boomers.”

During our early years, a good percentage of the population was out of work, and the economy then was in much worse condition that it is today. If one was lucky enough to have a job it was often sporadic; when there was work you worked, when the work ran out the boss sent you home with pay for the time put in: no sick leave, no paid vacation, no unemployment, and no medical.  Benefits?  There were no benefits.  Well, I guess there was one: having a job was the benefit.

Housewives watched every penny, nickel and dime striving to make ends meet.  Axioms, still of great worth, grew out of the struggle.  “Waste not, want not,” was my grandmother’s favorite, and she often quoted scripture when it was applicable.  “Use it up, wear it out, make it do or do without,” was another favorite of probably every housewife in the neighborhood.  Time and time again she put those words to a test transforming the good part of a torn shirt into “new” underwear for one of the younger boys using her sewing skills and an old treadle sewing machine.  Uppermost, however, was food; the mother of the house gave strict orders, “Clean your plate.”  The moms of America didn’t have to add the guilt trip, “People throughout the world are starving,” because people in America were also starving.  Waste was not allowed.

I suppose when you grow up understanding value, especially the value of food when you’re hungry, the words “clean your plate” can almost be redundant.  So it’s understandable that life-long habits are hard to suppress.  I recall my father breaking off a piece of bread, dropping it into the last puddle of gravy on his plate.  Stabbing the bread with his fork he mopped the plate clean before surrendering it to be washed.

Nor did my father stand alone in the practice.  Just about every red-blooded American did the same.  A clean plate was a show of gratitude and appreciation.

Many of us would have to plead guilty of this “offense” especially when taking one more biscuit from Thanksgiving’s basket and sopping up a little more giblet gravy.  While the Emily Posts of the world frown on the practice, especially in public, we do, on occasion sneak by with mopping the plate at home.  However, when I see Ken stretching his own boyhood habits (distorted by AD) it’s a little different.  Bread is cut up as if it were a piece of meat and if it’s gone or not recognized he uses a cut carrot, an apple slice or a couple of green beans to swab his plate, which he does at every meal.

I’ve watched how the rest of his eating habits have changed during the years of battling Alzheimer’s.  When there were only two of us (after the kids had grown and gone) presentation became more important than when we all sat down together eating family style.  With just Ken and me the dinner plates were filled at the stove and served as if we were eating out.  Now days, I still arrange the food in a pictorial manner, but I notice that before long he has stirred everything together making dinner a gooey goulash, although he does appreciate what I cook and often states, “This is good.”  The nice presentation has vanished, but the goulash is still served on a china plate.

Years ago I read a story (true or not I do not know) about a family who had taken in the wife’s mother, who might have been an Alzheimer’s victim.  The story did not tell, only that she was a crazy old thing who would occasionally break her dish after she had eaten.  In frustration, the daughter bought her mother a wooden bowl.  Each meal was served in the bowl: accidents still happened, but there were no more broken plates.

Eventually, the old woman died and the daughter tossed the wooden bowl into the garbage.  The young granddaughter, who for years had observed her grandmother eating from the assigned utensil, retrieved the bowl from the trash. “Why did you bring that old thing back into the house?” the mother asked.  Thoughtfully, the young girl answered, “I need to save it for when you get old.”

No matter how inconvenient it might be I believe AD victims need to have the same respect as the rest of us.  I felt sad about the old woman having to eat from a wooden bowl, and also felt as if the younger mother deserved her own daughter’s conclusion, which might have been, “When you get old you’re not worth much, not even a real plate.”

Don’t get me wrong; at a picnic or any other appropriate place, or if it’s your chosen lifestyle paper or plastic is just fine.  Just don’t use a cheap substitute as “punishment,” or because that particular “someone” isn’t worth the best of what’s available.

Often AD patients clean their plates so thoroughly they want to include in their meal the patterns under the glaze.  I’ve watched Ken do this time and time again.  My mother did it as well during her years with Alzheimer’s.

One evening at a friend’s home, as we completed an pre-Christmas dinner, Ken kept scraping at the Christmas tree design in the center of his plate.  “Don’t do that,” pleaded our hostess, “It will ruin the dish.”  Yet Ken continued “cleaning his plate.”  Other than the irritating sound, reminding me of finger nails on a chalk board, it would have been difficult to inflict permanent damage on the Christmas ware before Ken gave up and relinquished his plate, which, by the way, was clean as a whistle.

“Next time he comes,” my hostess said firmly, “he’ll be eating off plastic.”  Sure enough, on the next visit, where she had prepared a lovely pre-New Year’s dinner, my friend had a very special Holiday plate just for him.  While the rest of us ate off the good china, he ate from a festive plate made of very heavy paper with a plastic coating – a throwaway.  It was nice, but to me it was still paper.

For some time I have noticed that he often tries to include the flowers or scattered leaves adorning our dishes as part of his meal even after the plate is thoroughly clean and all food is gone.  I doubt that scraping the edge of a fork or spoon over the surface does any more damage to the glaze than does a steak knife cutting meat.  However, the finger-nail-chalk-board noise was getting to me.  Problem solved: I bought some plain white china plates for us to use with absolutely no decoration — no flowers, leaves and definitely no Christmas trees.  Even at lunch he gets his sandwich on one of the new plates, and if it gets broken that’s okay.  We have more.  He uses what I use whether it’s china, paper or plastic – whatever is appropriate.  But I do draw the line; absolutely no wooden bowls.

Originally posted 2010-12-26 23:56:30.

BE THE ANSWER TO SOMEONE’S PRAYER

A block print by Irene Weeks, the mother of Ann Romick who also suffered from Alzheimer's

Last year, a week or so before Christmas, I flipped through our church magazine stopping at an article titled, “Be The Answer To Someone’s Prayer.”  Captivated by the thought I read the article through.

As a woman of faith and active in my church I have always striven to do those requests asked of me, but never have I through of my acts as being an answer to someone’s prayer.  I believe in prayer, that prayers are answered, and yes, I believe “angels” help many people.  My favorite Christmas movie is “It’s A Wonderful Life,” but “me” as an answer to a prayer – it’s never even been a consideration.  So my answer would have to be – I’m not sure.

Please don’t misunderstand.  I believe I am, for the most part, a charitable person donating to many worthy causes, dropping money into the Salvation Army’s kettle, helping others, and I loved all of the old TV angel programs often to the point of shedding a few tears at the happy endings.  I have also been known to hand money to a guy carrying a gas can who asks for help in getting his car filled and the family back home.  “It’s a scam, Mom,” I was repeatedly told by any one of my adult sons.  “That’s all right,” I have answered.  “If it is a scam, then he has a problem, but I did the right thing in helping.”  Is that an answer to someone’s prayer – again I’m not sure – or am I a sucker for a scam?

I also received an email about a hospice physician living in Colorado who was forced out of a rainy evening’s traffic into a gas station because his car kept stalling. (I’m not sure if the writer was a man or woman as it was written in first person, and it really doesn’t matter.  However, for the sake of clarity I’ll refer to the person as male.)

Somewhat exasperated he looked around only to find himself stalled near a very troubled woman who appeared to have fallen down next to a gas pump.  Asking if she needed help, the tearful, haggard woman said she didn’t want her children to see her cry.  Our Good Samaritan noticed the older car filled with stuff and three kids in the back – one in a car seat.  Summing up the situation he took his credit card and sliced it through the machine nearest her gas pump saying, “I’m the answer to your prayer.”  She looked at him with surprise, and he followed with, “You were praying, weren’t you?”

As the car filled he went next door to a McDonald’s coming back with two large bags of food for the kids and a cup of coffee for her.  The kids tore into the burgers and fries like young wolves.  The woman shared her story of being abandoned by a worthless boy friend, and was now hoping to make a new start by returning home to her parents with whom she had been estranged for more than five years. They were looking forward to her and the children with open arms, and offered to help until she got back on her feet.

Feeling much better, she thanked her benefactor, and then asked, “What are you – some kind of angel?”  “No,” he chuckled.  “This time of year the angels have a lot to do, so sometimes God has to use regular people.”

He was the answer to her prayers.  And by the way, when he tried to start his car the motor turned over immediately and purred like a kitten.

Christmas: the time of year when we begin to think about being kinder, more charitable, more aware of mankind and their problems, and thoughtfully wonder, “How can I help others?”  And then we get busy writing cards, shopping, wrapping, getting presents ready for mailing so loved ones will receive their packages on time.  In a whirlwind of doing good, we often find excuses for not taking the time to think of doing “more good.”  Such was the case one blustery evening a week before Christmas last year.

It was near dusk, but light enough outside to see the wind blowing the never-ending rain of leaves from our trees when the door bell rang.  Before me stood a man in his 30s holding a rake; he spoke with an accent, but his English was good.  “May I remove the leaves from your lawn for a donation?” he asked.  My thoughts were not kind. Ken was in a bad mood, and I was busy trying to prepare dinner, needing to get back into the kitchen before something burned.  “Oh bother” I thought, “I just raked them yesterday, and I’m busy, and my husband has Alzheimer’s, and I need to see if he’s getting into something, and you’re here to rake leaves?  Why now?”

I all but said, “No thank you,” just to have him gone, and then I remembered the magazine article and the email tale of the physician and the down-trodden woman – whether it was fact or fiction – it didn’t matter — it was a beautiful story.  Before I could speak my uncaring thoughts, sending him away with his rake, a kinder, gentler thought raced into my mind.  “Perhaps you can be an answer to his prayer.”

“Sure,” I said. “Go ahead. There’s a recycle can next to the house.  Put the leaves in that.”  Suddenly, I felt better, less harried – less annoyed – a little more in tune with the season.

From my purse I took two matching bills placing each in a front pocket of my jeans.  If he did a sloppy job I would give him one, I decided.  For a good job he’d get both.  Returning to the kitchen it wasn’t long before the bell rang once again.  It was darker now, but still with enough light to see the lawn was perfectly clear except for the still-fluttering leaves falling to the ground.  With both hands I reached into my pockets and handed him the two bills.  “Good job,” I added.  “Thank you,” he said with a broad smile, “and have a Merry Christmas.”

In the realm of Sister Teresa’s life it certainly wasn’t a big deal, but maybe he didn’t need a big deal.  Perhaps he needed just a few more dollars – for whatever.  Was I an answer to his prayer?  I don’t know, but I felt good.

This year of 2010 has not been my favorite year.  There has been illness and death among our friends and family.  Ken’s Alzheimer’s has continued to plateau downward making his care increasing difficult, and the automobile accident in February which nearly took my life are not experiences I would like to repeat  Yet from the ashes of sadness and disaster I have found blessings.  And yes, I must acknowledge the abundant answers to my prayers through – not only God’s angels – but through the human angels He has sent to answer not only my prayers, but the prayers of those near and dear to me.

What better example is there about being the answer to the prayers of others than words from the Lord Himself as he reminds his disciples in the Bible (King James) —  Matthew 25:35-40 when he says, “For I was hungred, and ye gave me meat; I was thirsty, and ye gave me drink; I was a stranger, and ye took me in; Naked and ye clothed me; I was sick, and ye visited me; I was in prison, and ye came unto me.

“Then shall the righteous answer him, saying, ‘Lord, when saw we thee hungered, and fed thee? Or thirsty, and gave thee drink?  When saw we thee a stranger, and took thee in? or naked, and clothed thee?  Or when saw we thee sick, or in prison, and came unto thee?

“And the King shall answer and say unto them, ‘Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.'”

Originally posted 2010-12-18 18:43:52.

PAY IT FORWARD

We were on a date, Ken and I, just getting to know one another.  We had been to the zoo in San Francisco.  While walking back to his car we noticed a man in the parking lot with a handful of tiny American Flags – paper – the size of a postage stamp – glued, possibly, to a tooth pick.  Wearing a military cap, and one of the picks stuck into the button hole of his lapel, he didn’t have to say he was a veteran.  We just knew.  It was also Memorial Day and the veteran was soliciting donations for the VFW or some other worthy veterans’ group.  Ken stopped, took out his wallet and handed the man a dollar bill.  In return my date accepted one of the tiny American flags and, with the accompanying straight pin, I placed it on his shirt collar.  Mind you, when we were dating, a dollar bill was worth a dollar – 100 pennies — and could have paid for both of us at the neighborhood movie.  I was impressed.  My boy friend was generous. 

My husband – who happens to be the same guy who took me to the zoo – has always been generous; not only with money, but with his time and energy.  If someone needed help he was the first to step forward.  Saturdays were often lost at home because Ken was helping a friend or a neighbor do some job that needed one more pair of hands.  So the chores I had lined up for “Honey” to do were postponed until another Saturday.  He had an insatiable desire to help others – to be of service – to “Pay It Forward” long before anyone ever heard of the book made into a movie.

 Several years ago, when Ken was better and we enjoyed life together, we saw the movie titled “Pay It Forward.”  If you didn’t see it the story was about a young boy who believed in doing good.  No one taught him, no one told him to be kind, to be caring, and to think of others.  The gift of charity came with his packaging – a spiritual gift.  It was one of those feel-good movies with a sad ending, which possibly sealed his message of paying it forward on the hearts of all who saw it.

          

The boy’s outline for doing good lay in three steps:  Watch for opportunities to help someone, do something nice for someone you don’t know, and spread the word.  When a surprised recipient asked “Why are you doing this?” the answer was to pay it forward, and the recipient could continue the good work by helping three other people — instantly making the world a better place – and then those three people could help three more people until everyone everywhere understood about paying it forward.

 

Surprisingly, I found on line that through the book and the movie a foundation was created to educate others about changing the world through good deeds, and November 17 is “Pay It Forward Day.”  I am also impressed at how contagious it becomes.

 

My friend Jack who is on Facebook wrote on his page, “I stopped by the grocery store and just staked out the people waiting in line.  I noticed an elderly lady, and as she neared the check out I politely asked if I could pay for her groceries?  ‘Yes!’ she answered, shedding a tear, as did I, and I paid.

 

“When she was through the line I explained how ‘Paying It Forward’ works.  Thrilled with the whole concept, she left saying that she was going home and bake cookies for the ladies at the bank.”

 

Jack later told me he went back to the store the morning after he had paid for the older woman’s groceries.  “The same cashier was working and said she could not stop telling people what I did, which inspired them to follow the example.  She, for instance, paid the dinner bill for an elderly couple at a Mexican restaurant.  The response from their waiter, the manager and the couple was unbelievable.”

 

Comments from other friends quickly filled Jack’s page, and with his permission, some posts are printed below:

 

“Wanted to follow up on the ‘Pay It Forward’ idea, but since I missed the actual day I decided to make it a quasi ‘random acts of kindness’ instead.  I was at IHOP w/my Mr. & son, and noticed there was a woman eating by herself.  When my waitress gave me my check, I asked for the gal’s also.  The waitress thought it was great.  I told her it was because of my friend Jack and paying it forward.  Jack, you are an absolute doll! Someone who understands true charity and practices it.  LOVE and admire your huge and expansive heart.  I am grateful to be your friend. You are amazing, Jack!  Now, that’s the Holiday spirit!”

 

 “Awwww Jack.  I love it. I’m going to do the same……”

 

“I try to do this on a regular basis!  It’s amazing how good it makes you feel to do something unexpected for others.”

 

“I’ve done that on the Bay Bridge – paid for the person behind me as I drive through.”

 

“You made me cry, Jack, you are too kind.  God bless you.”

 

“What a beautiful thing you did Jack.  Brought tears to my eyes.  I will certainly begin to pay it forward.”

 

“You topped me, Jack.  Near Halloween some bigger kids saw my ‘Trick or Treat’ candy in my cart and said, ‘I want to come to your house.’  They were buying a bag of cookies, and I grabbed their bag, handed it to the cashier for her to ring up on my bill, and tossed it back saying, ‘Happy Halloween.’  They were shocked and said, ‘Thank you, ma’am!’ Kidding, I said, ‘I’m going to take those back.  How about Miss.’ I love surprising people like that.”

 

“I give candy canes to the toll takers on the bridge.”

 

“Jack, I haven’t seen you or spoken with you in a decade or more.  When I read your post, memories of you came flooding back!  This is SO YOU!  I will put this on top of my TO DO list for tomorrow.  Thanks for reminding us to take the time to pay it forward.”

 

 If Alzheimer’s had not been in his way I know Ken would be doing good deeds for other people the year round not even remembering the movie.  After all, he was known to many as the nicest guy in the world. However, I know he is not the only one with that title, especially as we enter into this wonderful season of hoped-for peace and goodwill to all mankind.

 

It’s good to know that there are so many nice people out there doing thoughtful things for others, and many more who just need to be reminded. The only thing I will challenge about the November date is that it’s too close to Christmas. Christmas: when most everyone is kind-hearted and thinking of others.  Perhaps they should have made “Pay It Forward Day” sometime in mid-January – after the Holidays are over; when it’s cold and full of winter, when the lights are gone and the Christmas trees are waiting at the curb for the recycling truck, and our thoughts are about just getting home where it’s warm and inviting; when we might be inclined to fall back into thinking mostly of our own comfort — ourselves. January: when it can be dark and gloomy, and the storms of nature and life keep pounding at our door.  That’s when we need to do and say, “Pay It Forward and Keep It Going.”  Keep it going into the brightness of spring, the lazy days of summer, and into the colorful charm of autumn as Jack Frost reminds us once again of another winter, and a year filled with generosity. May we all strive to make the entire year glow with the Christ-like goodness we all have deep within our hearts.

 

Meanwhile, as you are finishing that last bit of Christmas shopping, don’t forget to pay a little something forward.

.

Originally posted 2010-12-11 05:41:44.

MEETING DOTTY AND COMPARING

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.

Originally posted 2010-12-05 04:26:47.

THANKSGIVING MUSINGS

The day before the holiday I took a few minutes on Facebook to wish all of my friends a very Happy Thanksgiving.  Adding a short note of greeting I mentioned that even though we are all grateful for our blessings on a daily basis, Thanksgiving was a special day to review the year and once again be abundantly grateful.  Sounding redundant, I wrote that this day was the Super Bowl of gratitude.

Granddaughter Marisol quickly wrote back saying she was going to use that.  Continuing she told me about talking with someone who was basically a TG-Day Scrooge.  He all but grumbled, “Bah-Humbug,” about the holiday.  She was pleased with the idea of a Super Bowl of gratitude, and together we wondered about the naysayers of Thanksgiving?  We can’t call them Scrooge, nor can we add the “Bah-Humbug,” that’s already in use for Christmas  grouches.  We agreed that they would become just plain Old Turkeys — Tough Old Turkeys.   Later, thinking further ahead, but I’ll run it by Mari, instead of “Bah-Humbug,” how about using, “Bah-giblets.”  It flows nicely and a lot of Thanksgiving fans would like that one, especially grandson Sean who despises giblets.  He cooks them and then unceremoniously gives them to the dog.  She is overjoyed.

Our daughter Julie surprised me by coming to our house in the morning with wonderful vegetables to cook.  I thought her last years effort was over the top, but this year her contribution was fabulous: sliced and roasted brussel sprouts, roasted sweet potatoes, and green beans flavored with sage and butter.  (She believes roasting makes everything better.)   The day was half over when she finished with just enough time left to rush away picking up husband Tim for dinner with his parents.  “It’s all ready — just reheat and serve,” she instructed before leaving, and then she gave me a long, hard hug – half for me and half for Ken.  We’re never sure how receptive he is to hugs and didn’t want to change his good mood with an unwanted touch.  A wave and “Goodbye, Dad,” was sufficient.

Turkey day arrived at 12:01 p.m., November 25; an ordinary day, but being Thanksgiving it’s never ordinary especially when celebrating a holiday with a seriously ill family member.  Admittedly, it can be difficult.  However, the wonderful thing about our kids, their spouses and their kids is their acceptance of Ken, his Alzheimer’s and dealing with it in a matter-of-fact way.  Our grown progeny talk to Ken as if his mind understands their conversation, and that’s good – and appreciated – especially by me. It all feels so normal, and he feels involved even though his contribution to what is being said makes no sense to others.  They have learned to use some of my favorite key words and phrases such as: “Really?” “Is that right.”  “I didn’t know that.”  “I’m not sure,” in addition to a dozen other forms of reply to their father and/or grandfather who lives on another level of existence which doesn’t share our reality.

The afternoon and early evening was filled with good food, good company and lots of loving phone calls from those who couldn’t be with us.  Granddaughter Kristina, who lives here decided to spend the holiday with her mom and dad in Ogden.  She and significant other Chris drove the 800 miles, and then she called to wish us a happy holiday, as did other grandchildren and sons far away.

It was cold today.  I remember many years when we had the front door open because it was so warm, but not today.  After dinner Keith started a fire, we served pies and whipped cream and everyone helped themselves.  Most of the younger ones passed up the pies in favor of ice cream, and Ken felt tired preferring to go to bed rather than have even a dish of ice cream.  Tomorrow he can have his choice.

Have you ever noticed when company leaves it sounds like a swarm of bees?  They often leave in a mass – a tight group – making  buzzing sounds with everyone talking at once.  Adults are still finishing their conversation, saying goodbye, a frantic realization and quick search for a child’s missing shoe — it’s found — gathering coats, purses, dishes, hugs and kisses, waves from the porch, and then silence.

Pulling a rocking chair closer to the fire I put my feet up on the hearth and watch the flames dance in the grate.   A perfect time to reflect on the day, the year and count my blessings. It had been a good Thanksgiving and a good day for Ken. I am grateful.

We have come such a long way from those long-ago Thanksgiving days at the little farm of my parents in Sonoma County.  How the years have piled up bringing constant change to our lives; taking away our older dear ones and birthing new life for us to love and watch grow.  I sat there making a study of the dying embers feeling just a little melancholy, and then the phone rang; a bit late, but not for a holiday.  It was Debbie calling from Ogden.  “I just wanted to wish you and dad a Happy Thanksgiving,” she said.  The melancholy vanished with her hello.  I suppose I needed one more slice of family to complete the holiday.

We talked for a while comparing dinners and guests, our family here and most of her family there.  The debate over using the good dishes of our shared tradition or paper plates as some of the younger generation would prefer.  Makes life easier is their claim.  Deb and I laughed realizing that even the utensils we use for eating are part of someone’s tradition.  And as previously stated we must respect the traditions of others, especially the coming generations.  So we wonder as Thanksgiving 2010 fades into history, who, in the future, will be interested in or even want our good dinnerware and all of those bone china tea cups?

Originally posted 2010-11-28 08:15:53.

TRADITION REVISITED

Is it Thanksgiving that kicks off the Holiday Season, or is it Halloween?  While the “they” forces are debating the question I’ll take a quick sentimental journey back to my own childhood remembering Christmas decorations lurking on the high shelves of our local “5 and 10 Cents” stores waiting for the Halloween masks and costumes to disappear.  No different from merchants of today, they couldn’t wait to push an early start for Santa’s helpers to swing into action.  My sister Janet and I used to ask one another, “What happened to Thanksgiving?”  Even at 9 and 12 we were aware that every holiday had its own tradition, and it wasn’t Christmas, but Turkey Day that arrived in November.   In school we had learned of the pilgrims sharing their harvest with the local Indians and giving thanks to the Almighty.  Nice beginning.   America’s first Thanksgiving has long since been tradition, and we continue to celebrate as the first gusts of cold air remind us that winter (and Christmas) is, indeed, on its way, but first let’s have our day of gratitude.

When we were children both Ken and I spent Thanksgiving day with family — not friends — family; unless the friends joined us for dinner.  As youngsters we were yet to meet, but family traditions were pretty much the same.  Dinner was either at home, or everyone gathered at some other relative’s house; that house belonging to anyone on the long list of the aunts and uncles.

After we were married we continued to share with one another the Thanksgiving traditions of our parents, aunts and uncles. It was a little more difficult because we now had his family and my family from which to choose.  It was also noticed that our cousins were growing up, getting married and having children, as were we.   With so many invitations and so many relatives, the older generation soon realized that traditions needed to change — not disappear — just become less rigid,  less cumbersome, evolving — even morphing — into a family solidarity of  love  and genuine affection for one another — which they did —  all the while respecting the new chosen Thanksgiving traditions of the younger generation.

We settled on Grandmother’s house – either one.  When Ken’s parents, Rose and Nick, began to have health problems we brought our brood, their brood and Rose and Nick, health permitting, to the home of my parents; a country setting located in Northern California’s Sonoma County.  For years my personal tradition was to arrive on Monday to help my mother prepare; making pies, cooking ahead and cleaning – getting ready for family on Turkey Day.

It was during dinner that last year when I noticed my mother seemed to be talking endlessly about not much of anything.  Her dinner plate was untouched as she droned on and on until my father said, “Irene will you stop talking and eat your dinner.”   She paused, took a few bites and began her filibuster once again.  I had noticed her being inattentive the previous three days, losing concentration and not listening.   Later, much later, we realized she was slipping away into Alzheimer’s.

Nick and Rose had already journeyed into the disease.  It was more than 35 years ago when doctors weren’t even certain what was wrong: “Just old age,” was the usual diagnosis, “or senility – maybe dementia.”  The medical community groped and we did too.  Uncertain about what to do, we did the best we knew finally placing them in full care facilities when we could no longer cope.

My parents moved back to the Bay Area to be near us so we could supervise and be a part of their care, and life continued.  So did tradition, but once again a new one:  Thanksgiving dinner was at our house just as I had promised Mama.

Years before when I could see my mother was growing tired, not so much because of the work involved with family gatherings, but more of the house being filled with company; the laughter and chatter of adults, the clamor and joyful sounds of children, the cry of a new baby seemed to tire her.  Interesting, no matter how much we might love family and parties there comes a time when a little peace and quiet is better.  My parents were ready for love and devotion to be served in small portions.  I suppose we can compare the often overwhelming joy of family to a lifetime of being stuffed with Thanksgiving dinners – some better than others – but appreciated none the less.  When age finally dictates after such a life-long feast, and we are filled to the brim, all that is wanted is a very thin slice of pumpkin pie.  I understood what she meant; enough was enough.

Nevertheless, she worried about letting go of the reins of her tradition, “If I don’t have the family come to our home, then where would they go?”  Smiling a sad smile I reassured her, “Then they will come to my house, and when I’m not able someone else will have the family Thanksgiving at their home.  There will always be someone to hold it together because family tradition is so precious.  Just let me know when you and dad are ready to let it go.  I’ll be there.”

We took photos after dinner that year: family photos, group photos, candid photos, couples photos and Mom and Dad photos.  With everyone being in a jovial mood, Dad made the announcement, “This is the last Thanksgiving here at the farm.  Mama just isn’t up to it any longer.”  The invisible baton of tradition was handed to me and for all of these years I have held it close.  It has changed, been reshaped, gotten smaller – and larger – depending on the number of guests.  The door of Ken’s and my home swings wide, and there was/is always  room for one more.

Since Ken’s AD Thanksgiving is always the holiday which hangs precariously in limbo until November.  By then I know whether we can do it one more time — or not.  In October we had a small family gathering.  Ken was very good.  Somewhere in his damaged mind there remains a spark of social.  He did so well that evening I decided yes; we would have Thankgiving dinner at our house once again.  Our daughter Julie and her daughter-in-law Marisol did the cooking last year, and what a wonderful gift it was.  This year I will have Ben to help when he isn’t watching Ken, and those coming will all bring a dish of something fabulous for the table, as usual.  What a bounty of blessings abides in my home.  I am forever filled with gratitude.

Last Thanksgiving I wrote about “Fiddler On The Roof,” Tevya and his ever-changing tradition and reluctantly accepting what he could not change when his daughters began their own traditions.  I see my battered baton fragmenting as did Tevya’s; bits and pieces scattering in many directions as members of our family move to various locations throughout our great land, but that’s okay even though we will miss them.   I think of tradition as a lighted candle –  like love.  It’s by sharing, giving it away,  allowing it to spread that it becomes bigger, better and brighter.

Following the “tradition” of Tevya and his humble friends I decided last year to place a metaphoric fiddler on my roof as a reminder that in spite of the adversities we all have, life is good.  As far as I know my fiddler remains.  Listen, once again I do believe I hear the lilting strains of music.

Originally posted 2010-11-20 21:38:29.

FRIENDS IN CYBERSPACE

Early on with Ken’s Alzheimer’s I joined a support group sponsored by our HMO.  My friend Madalyn, whose husband was also an AD victim, picked me up for my first meeting, and for a time it was a good thing.  I would hate to use the term “Misery loves company,” but I’m going to use it anyway.  Perhaps it was the motivating force for going — at least in the beginning.   Finding others who share the same burdens, the same dilemmas, and the same problems is often comforting as well as educational and helpful.  After all, it is this miserable disease in common that links us together.

However, circumstances change: Madalyn’s husband passed on, the timing no longer fit into my schedule, and eventually Ken couldn’t be left alone for such a long period of time.  No matter how beneficial the guidance and help had been, plus the medical information obtained, attendance for me became impossible, yet I needed something.

Other sources:  Books for starters, Madalyn gave me her copy of “The 36 Hour Day.”  Another friend began sending me scientific updates on the disease, and I continued searching the internet for any new developments.  Johns Hopkins puts out a weekly newsletter covering many facets of many illnesses, including Alzheimer’s.  I subscribed and it arrives quite often in my inbox.  Printed under the headings of any one of the issues are diseases of interest.  Each mini article allows the reader a glimpse of what’s contained in the full paper.  For more solid information you must download the rest of the paper or book for a fee. It’s good to know an abundance of helpful information is available if and when needed.

After reading and more reading plus watching PBS’s specials on Alzheimer’s I found I wasn’t necessarily looking for any further brain scans or definitive breakdowns on the disease.  I felt thoroughly informed as to what was happening to Ken’s brain.  Okay, I understand what it is – now what?  It was hands-on information I needed:  like an in-house support group where I could glean and share tips on how-to skills, in polishing up my own acceptance, increasing my strengths, my endurance, coping methods and picking up on dozens of ideas not even thought of.  Back to the internet – and what a wealth of support group information exists — mostly from people just like me.

The first post of my Blog, nearly two years ago, had an immediate response from Dr. David, a middle-aged psychiatrist who appeared to be much too young for any of this, but was stricken with Lewy Body Dementia (LBD).  I know next to nothing about LBD (which is no doubt lumped under the Dementia Umbrella and is a close relative of Alzheimer’s) Despite my LBD ignorance David was warm and welcoming, inviting me to join his link.  That evening I read several entries from his blog as well as entries from others as far away as Australia, all of them coping with LBD.  I ached for where they were – physically and emotionally — and what they were going through: the victims as well as the caregivers.

Dr. David’s wife Pam is his caregiver, and I’ve noticed, now, when I go to his site and read his entries I find his battlefield has become strewn with his many losses, but he struggles forward enduring as the valiant fighter he has proven to be.  His posts are dotted with what we all feel: anger, frustration, humor, incredible sorrow, and acceptance, but also with lots of information, hope for a breakthrough and some positive signs for more research funding from Congress.  A breakthrough in any of these mind deterioration diseases will benefit us all.

I also find encouragement from writing my blog when I receive comments from people I don’t even know.  Most, if not all, have had experience as caregivers for AD or other related diseases.  For many their battle is over, but for some it’s just beginning such as one woman who was caring for her AD mother and had just been diagnosed with early-onset Alzheimer’s herself.  She was pleased to find my posts are driven by my faith and my personal relationship with God, and took comfort in my writings about what we shared.

From as far away as South Africa I was advised that there is life after Alzheimer’s.

Another message stated simply, “Thank you for sharing your journey with us.”

Writing to me about my post a young woman wrote, “How sweet, and how sad at the same time.  Whenever I read your blog I am blessed.”

“Best of luck to you.  I know how difficult it is.”

From another who wrote, “The hardest thing to deal with is feeling alone, but you are not alone.  We are here and through this blog we can share in your very difficult battle.”

There are many out there who believe the internet is a bad thing filled with perverts, child molesters and ugliness.  It can be.  We do hear, see and read stories of its abuse, and lives ruined because of misguided and inappropriate use.  Simply put, it’s a tool.  Any tool can be used for evil – or for good.

Writing about my journey has brought me peace and has kept me focused.  I often refer to my computer – especially the far-reaching internet — as my electronic therapist, which I may have stated in previous posts.  Not only can I tell my readers of the good moments in our battle against AD, I can vent.  And during the tough times if I need some encouragement all I have to do is go to my pages of comments and read all of the supportive words from those of you who have taken the time to leave me your loving, caring messages.   I know that I am not alone in this frightful journey.  Thank you.

Originally posted 2010-11-14 03:40:53.

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