aging

THE DEMENTIA UMBRELLA

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

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

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

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

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

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

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

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

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

Sometimes It Just Takes A Good Cry

This should have posted previously. (March 10, 2010) I wrote it just before I left, over a month ago. I post it now, so that others will know caregiving, like life has many different kinds of moments. None last very long. You just have to go with the flow. – Debbie Schultz

This morning the sun shines gloriously after a hard rain. Surrounding me the world is bright green, and sparkling blue, with sun glinting on the delta from my son’s backyard.  All seems right with the world. I will be on my way home in a few days; back to Utah and my mountains. The snow is gone from the streets and spring is peeking through, or so my husband says. These last few days I have really been homesick and it feels good to say that Utah is my home, an ambiguous phrase that I couldn’t say before I left a month ago.

Taking care of my Dad has been one of the most challenging experiences I have had in my life.  I did the best I could, and I could not have done anything else. Whether the systems I have set up work remains to be seen.  He has good, kind people caring for him in his home. They may not be able to meet his needs if he continues to get more combative and difficult to keep clean. Unfortunately another one of the evils of this disease is the patient is often his own worst enemy.

Before I cared for my Dad, I thought families who put loved ones with Alzheimer’s in institutions were somehow copping out. Now I know that each family makes their decision based on their own resources and abilities. For some it is an easier decision to make than others. I don’t know what my father was like right before the accident, I just know that caring for him has been really difficult. I cannot, however, excuse the treatment of turning people into vegetables, hoping they die quickly. I feel he was treated that way in the hospital: sedation, catheterization, tube feeding or no feeding. The will to live is given up very easily in those circumstances.

What the answer is, I don’t know. I feel a huge responsibility in leaving. I know when I get home I will worry about how he is getting on. On how both of my parents are coping. If the caregivers work out and can handle both of my parents? Will my mom be able to heal while still worrying about my father? I know I will be back soon, but I am not independently wealthy and I have a family and business to run in other places.

So yesterday among all of these conflicting feelings, and burdened by the enormity of everything, and the difficulties continually surfacing regarding my father’s care, I had a good, hard sobbing cry. And then I watched some tender movies and cried even more. Like this morning’s early rain I now feel cleansed, and I’m ready to continue forward doing the best I can, while trusting in a God who sees the whole situation and will someday answer all of  my questions.

Originally posted 2010-04-28 03:54:10.

Blessings In Disguise

Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

Originally posted 2010-04-28 03:39:46.

Oh The Things They'll Eat

Another guest post from Deborah Romick Schultz. Ann is still recuperating at her daughter’s. She has been home a few times to visit Ken, but is still to weak to stay there for very long. Ken continues to be cared for at home by family members and paid caregivers. Deborah has returned home to Utah. This is something she wrote while caring for Ken in California.

My dad has a hearty appetite not affected by his Alzheimer’s. He eats and then he forgets he just ate and eats again. Last night I brought home Chinese food with a large portion of rice and noodles, thinking we could save some for another night. I dished up both of our plates and then the phone began to ring. My dinner was interrupted three times. It was no big deal, except it gave my dad time to finish his dinner and clean his plate. Then he insisted he hadn’t had a thing to eat, was starving and wondered why I was eating and he wasn’t. So on top of his full dinner, I gave him all the rest of the noodles and rice and he gobbled those up too. This is not a growing boy, but maybe, because sometimes he thinks he is one, he has the same appetite.

It’s not just the amount he will eat, but his willingness to eat anything. At times this is a good thing, because I am able to cook whatever I please, and he eats it with gusto, proclaiming how much he likes it. We are polishing off my broccoli slaw, a delightful dish which sits in the fridge going to waste when I make it for my family in Utah (so I don’t), but my dad eats it with pleasure and compliments.

In his stubbornness if he believes something is good, he will continue to eat it all, even if it isn’t good.  He insisted on eating a whole jar of salsa with a spoon straight from the jar, and before the accident polished off a jar of capers and a special concoction he made using the contents from a large spice jar of turmeric.  Adding water he insisted it was butterscotch pudding. (He later slammed down his spoon proclaiming how awful it was.)   Dad has also indulged in a generous helping of dirt (looked like a crumbled bowl of chocolate cake) from one of my mother’s plants, saying it was delicious.

I have found  the best offense to his peculiar eating habits is a good defense. If I offer him something every two hours he seems less likely to help himself to strange contents he may find in the refrigerator or anything else that looks like food. Now if we can only discourage him from helping clean-up the kitchen after we eat.  No telling what he might find.

My mother has a bowl of very life-like fake fruit that sits on the dining room table. The apples have definite bite-marks, but he will trade for the real deal when offered.  I finally put the decorative fruit out of sight after he insisted that the fake banana was real. He broke off the tip to peel it, and when that didn’t work, proceeded to try and cut it with a butter knife.

Just like a small child, the answer to all of this weird food eating is trading. He has a real fondness for vanilla pudding in individual cups. I trade the weird stuff for the pudding and he’s generally willing to give me whatever he has decided is the food of the day. But whoever receives the green onions he has insisted on mailing in an envelope will have a real surprise, but that’s another story if he finds a stamp.

Originally posted 2010-04-07 05:01:25.

Fun in Kenland

Mom's bathroom
Bathroom creatively locked. Decorations by Ken

“How are things going in Kenland?” My brothers and sister asked me when I stopped by to see my mom in the hospital. It has been an enlightening experience. With 15 years of teaching special education, and caring for my niece and her mother, both with special needs, I felt pretty well prepared to take over with my dad, but this is a new ball game.  The following are bits and pieces of what I have experienced and observed after accepting my emergency assignment:  To find caregivers for my father while taking on my mother’s caregiving responsibility.

My career choice is that of a teacher (now retired) and certified in special education.  My dad is not one of my students, though my attitude toward caring for him is similar.  As part of my education, I was taught that the person always came first before the disability. We described a student as a child who has Autism, not an Autistic child. So I have always thought of my father as a person with Alzheimer’s, not an Alzheimer’s patient. (But I don’t mind referring to Alzheimer’s caregivers; it’s what they do, not who they are.) My father has special needs, but he is still my dad, and the man that he is/was continually peeks out from behind the Alzheimer’s.

With caregivers coming and going, and friends and family in and out of the house, the front door should have been revolving.  However, it is always locked because my father has changed since the accident and we all worry that he might now wander the neighborhood if he gets outside, so everyone must ring the bell to gain entry.  My parent’s doorbell plays “It’s A Small World” like a merry-go-round. It rings easily when someone who is outside accidently bumps it.   “Small World” also fills the air as a constant stream of visitors keeps the doorbell “alarm” going, adding to the carnival atmosphere. If I hadn’t reason enough to hate the song before, I sure do now.

There are at least five phones in the house, but only the phone in my mom’s office and my daughter’s bedroom work, which keeps Ken from answering the phone. How many messages my mother never received because he speaks into the phone in a completely logical way, giving out the wrong information, will never be known.

Cell phones could be the answer but they have their own drawbacks. Like a crow, Dad loves shiny little things. Electronics seem even more important to him, and can easily be picked up, pocketed and hidden in his own special places, never to be found again. He has no cell phone etiquette (actually he doesn’t even know what they are) but seems to take delight in the look of panic suffered by the owner when their cell phone goes missing. Taking my daughter’s cell phone one day, he held it hostage over the toilet while she cried helplessly from the shower. “I’m going to drop it in,” he threatened, until I came to the rescue.

The bathroom, being full of small important things, is Ken-proofed.  My father was not slowed by childproof locks, so my mother had to go a step further. A puzzle of locking systems that would make Ft. Knox proud keeps him from rearranging or getting into cabinets and drawers which could prove dangerous to his health.  My mother has drilled a small hole through the drawer and the cabinet and a simple nail in the hole keeps doors and drawers 
“locked.”   More complex is the key inside the “nailed” drawer which fits into the padlocks, which hold the chains which keep the major cabinets closed.  In keeping with the new decor, Ken thinks the chains are towel holders and hangs the towels accordingly.

Sleeping hours add to the zoo-like atmosphere of Kenland. Since he periodically proclaims this is no longer his home, despite signs all around to the contrary, he sits up nights in a chair in the living room, waiting for someone to pick him up. No amount of coaxing can get him into bed. He dozes, and eventually gets cold and tired, finally heading off for bed at his own good time.  In order to assure he does no harm in his nightly wanderings, all of the doors in the hall except his bedroom and the bathroom are locked.  Pieces of drapery cord laced through the louvered dining-room doors keep the kitchen off limits. He sits in the dark waiting, but he never gets upset or impatient.   Previously, my mom had told me about his late-night guard duty, so I was somewhat prepared.

Though living in Kenland is not really fun, it has its funny moments. Grabbing my daughter’s sunglasses, left unattended on the counter for a few minutes, gives everyone a good half hour of entertainment as he insists any and all eyeglasses belong to him.   Not being able to see through someone else’s shades, he finally reaches out for his own glasses.  He has his own quirky way of reasoning that is often hilarious, but logical to him.

What we have is a disease:  Alzheimer’s, and that’s what it is. I believe my father’s home is still the best place for him — as of now. Like a naughty little boy he rules the house. Crossing him or arguing make no difference with him in his set ways, so as much as possible we don’t challenge him.  This is not a power struggle with a winner or loser.  Alzheimer’s has no winners, and in the end, only a continuing sense of loss.  Whether Kenland is fun or not is really not the question, because it really isn’t fun.  We just laugh a lot so we don’t cry a lot.   The answer is in doing our best by honoring our father as he once was and by trying to serve him as he is during these last years, and by striving to not only do the best we know, but praying that it is enough.

Originally posted 2010-03-03 06:20:23.

SOMETHING TO GRAB

Goofy tripping

The alternative to not using grab bars is just not worth it.

January 22, 2016 – Like it or not, growing older makes using grab bars a fact of life, and a smart thing to have around. You just never know when your destination is going to be “down.” It has been more than 20 years since I slipped as I carelessly stepped on a well-used denim bag while going into the garage. The item was Ken’s old duffle bag from his Merchant Marine days that I packed with weekend clothes for frequent trips to our house trailer parked in California’s gold country. The bag was one of a dark pile of clothes waiting to be laundered.

It  was as sturdy and strong as it had ever been, but constant use had made its surface smooth and polished. As I plunged forward into the garage and its solid cement floor I imagined my nose broken, front teeth gone and loss of consciousness to say the least. However, Ken had built shelves along the connecting wall with a small 1” x 2” board nailed to two supporting posts.

I do believe the board was for my inconvenience. I did have a bad habit of temporarily placing garage items on an accessible shelf just under the board which I always planned to put away at a more convenient time. The small board was meant to block the shelf from my bad habit. In actuality, it saved me from a bad accident.

Somehow, as I was falling forward I reached out and grabbed that board which stopped most of my forward motion. My feet, though,  continued their journey on to the top step. I landed on the big toe of my right foot. Ouch. I heard it snap, but. at least, I didn’t end up on the garage floor with my face down.

Continue reading

Originally posted 2016-01-23 18:34:37.

SHOWERS: SOME DAYS ARE BETTER THAN OTHERS

 

Man in Shower 2

Showers can be difficult for Alzheimer’s caregivers.

SHOWER:  I CAN DO IT MYSELF

July 27, 2012 — Today was a good day with Ken even though Alzheimer’s has taken him very deep into self.  I have often wondered about the deep dark pit of self and what parts of personality might be fragmented in this lonely place.  I wonder if it’s terribly crowded there because every so often a glimmer of self slips out and pays us a brief visit.  Identifiable only that it was Ken.  Not the Ken of pre-Alzheimer’s, but Ken nonetheless.   He spoke to me and Ben in sentences, disconnected sentences, but sentences, with a few questions intermingled.  I doubt he was interested in the answers, but I was thrilled when he asked who I was. I gave him my name rather than tell him that I was his wife.  Years ago, as he faded deeply into AD, he denied being married so I felt it best to leave it that way.  My name didn’t register and that was all right too.  The best part is when he is communicating with us he is calm and very cooperative during that time period, which makes it special, and easier, because today was shower day. Continue reading

Originally posted 2012-07-28 00:00:00.

THE ROLLER COASTERS

rollercoaster

The ups and downs of Alzheimer’s can be worse than any roller coaster ride.

I dislike roller coasters. From the first time I visited Play Land At The Beach, which was   a very long time ago, I was wary of the ride – intrigued – but wary.  The ancient granddaddy of fun loomed over the rest of the concessions like the skeletal mid-section of a mythical dragon; a grayish monstrosity of what appeared to be old pieces of weathering wood which I believed to be untrustworthy even when I was young.

The amusement park was located right across from the Pacific Ocean at the end of the Great Highway and just a short walk south from San Francisco’s famous Cliff House.  Even as a pre-teen I could hear the rickety structure clickety-clack and rattle as each line of speeding cars roared up and down the  mountains of lumber and track finally screeching to a jolting halt at the end of the line. Frightening, yet I was fascinated.  “Oh come on you big baby,” badgered one of my older sisters.  “You’ll love it.”  Scary though it was, I wanted to love it like everyone else.

The three of us climbed into the seat, the attendant dropped the safety bar as my sisters warned, “Now hang on and never let go or you might fall out.”  Fear griped me and we were off. Climbing up was all right, but the descent was horrific. I hated every blood-chilling moment.  Furthermore, with each threat of death I repented of all my sins – however many sins a pre-teen could accumulate – I was penitent.

Time and time again, whenever I visited Play Land at the beach with my sisters and friends I was coaxed back onto the roller coaster with the promise from someone, “Oh, you’ll like it this time.  You just have to get used to it.”  Fear-stricken, I repented once again promising to be ever so good.   Still, I hated my skinny little body getting bruised, slammed and thrown about with each jerking turn.  With my eyes squeezed shut I could have been riding on the back of a mystical dragon with its tail twisting back and forth threatening to toss me high and away into the great unknown.  Minutes later and peeking out from the safety of my closed eyes we were facing the last invisible decline over what seemed to be the edge of the world. Terror froze deep in my throat while other passengers screamed and shouted with glee.  Suddenly the ride stopped, the dragon vanished and we girls stepped out of our cars into the laughter and happy shouts of Play Land At The Beach.  I was safe.

As an adult and the mother of five grown children not much has changed regarding roller coasters except they’re bigger, better and faster as they race over the modern, steel-supported network of tracks.  Ken loved them, and always did.  He was probably one of those smart-alecky kids who laughed, yelled and held his hands straight up in the air on every downward dive.

At Great America, where we went for a family day that roller coaster not only did the up-and-down thing, the tube-like car also spun in circles.  “You’ll like this one,” Ken had insisted.  “Come with me.  It’ll be fun.”  It wasn’t.  I repented again — and then found the ladies room where I lost my lunch.

Feeling sorry for me we had a 7-UP to settle my still-pitching stomach and found my kind of ride: those cute little boats that carry you through a maze of tracks onto an intermediate slope sending the passenger-filled boat into a boxed-in lake where, for thrills, you get a good splashing of water.

With roller coasters, Ferris wheels, merry-go-rounds, and even little boats now a part of our past, Alzheimer’s has brought us a new kind of roller coaster.  This one too is a dragon; its tail flipping our energy and emotions in every which direction. I don’t like this one either, and if Ken had his wits about him, he would be on my side.  Nevertheless, we’re both along for the ride whether we like it or not.  Unfortunately, there is no jolting stop where either one of us can get off – save it be death – or somehow a miraculous cure.  So we endure.

There are times when I see him fearful, as I was on that very first ride.  I know he is plunging into a down mood. “No!” he shouts.  “I’m not going.”  Going could be anywhere he doesn’t believe he wants to go, or it could be just his way of being independent, or believing he must make a decision and not being certain he automatically says, “No.”  Nevertheless, he means no — no to showers, to eating, to bed, for a ride, for a walk or to visit the doctor.  We might as well take him into the House of Horrors because he has that same expression of unknown fear in his eyes.

Later, when his mood changes to up and he sees me not only as someone he recognizes, but as his wife who he invites to sit beside him on the sofa.  I do and he puts his arm around my shoulders saying, “I love you.”  I sit closer and rest my head against his chest — snuggling in — and for a while it feels like old times: reassuring and good.  His face is relaxed and he smiles when he looks at me.  For a while he is calm and quiet.  We sit for as long as he’s willing — for as long as the up mood lasts.

His face begins to puzzle and I move away to prepare a simple dinner hoping to have it finished before he becomes hostile.  Cleaning his plate with a crust of bread, his eyes begin shooting daggers at me.  “You don’t belong here,” he hisses, “get out of my house.”  I pretend to be accommodating and when he gets up to make certain I’m leaving I close and lock the kitchen door behind him.  It’s good for Ken – and me – to take a break.

Quietly I watch him from around corners, and through a slit as I barely open the door.  He seems more peaceful sitting in a living room chair all by himself.  His mood is changing once again.

“It’s cold in here,” I remind him in a little while knowing the ride is taking him up.  “Do you want to go where it’s warmer?”  He ponders my question and then makes an excuse about why he can’t abandon his post or adjourn his imagined meeting.  I leave and try again minutes later – hoping he has forgotten my earlier attempt to get him into bed.

“Okay,” he finally agrees, his eyes groggy, and he follows me into the bedroom.  The covers turned back, he sits on the edge of the bed.   “You can put your feet up,” I suggest.  “With my shoes on?” he asks.  “Whatever you want,” I reply.  When he understands he still likes to make his own decisions, and then he kicks off the moccasins pulling his feet up onto the bed.

I place a blanket over him in much the same way I covered his children all those many years ago. “There,” I ask, “doesn’t that feel gooood?  Sooo nice and warm!  He is smiling, his eyes inviting.  “Do I get a kiss?” he asks.  “Of course,” I answer leaning over kissing him softly, gently; one more time as he whispers, “Goodnight.  I love you.”   “I love you too,” I reply, turning out the light.

The switch also closes the lights on the day’s roller coaster.  We’ve traveled through the gambit, which included Ken spitting in my face during the morning clean-up time with Ben, gouging my arm even though his fingernails are closely clipped, to the lovingness of a goodnight kiss.  Today is done, and I sigh with relief.  Some days the ride is more stressful than others, but no matter, we are forced to continue.  I hate the Alzheimer’s roller coaster more than all of the other electronic ones combined.

A few years ago, when his illness was milder, my sister asked, “How can you stand this day after day?”   I answered, “You just learn to live in the moment.  Don’t lament about losing the good times, or even begrudge the bad.  What we know for sure is that no matter where we are in any moment of our life it will change,” reminding her of our youthful pleasures and how happy those days could be, but they didn’t last and when they were gone we felt so wretched.  “Remember what Mama used to say to us during those down times — when we believed that life would always be the pits – she would remind us, ‘And this too shall pass away.’”

We all know that we can beat our chests and cry into the wilderness about how unfair life is, but it doesn’t change anything.  We can ask, “Why me?” but there is no answer to that question.  We can be miserable and sad — or accepting – and in the accepting we can enjoy the small fragments of happiness which still come into our lives and are part of the ride.  There’s more than one way to ride the mystical dragon.

 

Originally posted 2011-01-23 04:46:07.

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.

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.

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