I thought about it right after Thanksgiving and then asked myself, “Do I want to put up the tree and all of the decorations this year?” I didn’t bother to answer me, just thinking of getting everything down, all the work, and even wondering what Ken’s reaction would be held little appeal. He does so much redecorating anyway: magazines in the cookie jar, newspapers tucked neatly in the refrigerator or oven, his hairbrush and comb in the candy dish and rolls of bathroom tissue often line the mantel. Did I want him pulling off the ornaments and hiding them so our mysterious “someone” wouldn’t steal them, or would he try to fit the small ones in his shirt pocket because they were pretty — or of great value. Or worse, not remembering its purpose, he might ask me to take the tree down. Was I going to be Scrooge this year and say, “Bah, Humbug” to so many years of tradition, even though I shop for Christmas all year-long? If there is no tree, where will I put all of those wrapped gifts?
As I pondered, granddaughter, Katie, asked, “Is there something I can do for you, Grandma?” I assured her that things were pretty well in order. Then she suggested, “Can I help you put up the Christmas tree?” Without hesitation I answered, “That would be lovely.” Two days later she was up on the ladder handing down boxes of decorations and I was truly happy about her willingness to help. In my heart of hearts I wasn’t ready to give up on decorating for the Holidays, reminding myself that all of our married life Ken and I always had a Christmas tree.
The first one, of course, was small and simple. Our budget didn’t stretch far, allowing us only a few lights and a box of ball-shaped ornaments. Ken’s mom added a few of her’s to our meager beginning. We debated about a star for the top, and then decided on a glass spire which reminded us of the spires on churches reaching toward Heaven, which we felt, was also a remembrance of what the season is all about. We could make a few “Stars of Bethlehem” for the branches to fill in around our limited ornaments.
As the number of years began to increase in our marriage, so did children, enriching our lives while keeping our budget in a continued tight rein. Each year we searched for the best buy on Christmas trees even if it meant buying one a few days before December 25. We filled the lower branches with unbreakable and paper ornaments which could be touched and held by little ones and then placed back on the branch following close scrutiny plus a few teeth marks as stamps of approval. Our family dog shared in the joy of Christmas trees by excitedly wagging her tail removing strands of tinsel in a single swoop, and on occasion managed to tangle herself in the lights. Fortunately, Ken was there to grab the tree while I rescued the dog. The early years seemed to be set up for a touch of calamity.
One year in search of a tree to fit our Holiday allowance, we spotted a lot advertising, “ALL TREES — $1.50.” Upon closer examination, they all rivaled Charlie Brown’s pitiful story book tree. I found one with a beautiful front, but no back. Ken found its match. Holding them back to back they made one perfect tree. “We’ll go home and I’ll wire them together,” said Ken.
“Hey, wait a minute, I can’t sell you that for $1.50,” declared the lot manager observing our beautiful, full tree. Where did you find it? It’s worth at least $10.00.
“You’re right, replied Ken pulling them apart, “it’ll be $3.00 for two trees.”
“Great idea,” exclaimed the main man. “I’ll match up a bunch and have my lot cleared in no time at all. Merry Christmas.”
So, for more than a half century we’ve had a Christmas tree; sometimes, depending on how ambitious I felt, we’ve even had two. This year, the tradition continues; for that I am grateful, and I’m especially grateful for Katie.
To finish decorating I hung wreaths in the windows, laced garlands of fresh evergreens across the mantel, scattered holly, pine cones and then sprinkled it all with tiny white lights. Legend says Christmas elves hide among the garlands and bring good luck. With Katie’s help my house is alive with Christmas and the accompanying spirit of happiness and joy.
Ken hasn’t bothered any of it, almost seeming to know it’s symbolic of something. I remind him often that it’s our Christmas tree even though the word Christmas appears to have little meaning for him. Yet, the other evening we walked briefly through the neighborhood to look at the lights. After the rains the air was clear and a bit crisp and as we walked he said, “I haven’t been Christmas shopping.” “We’ll go next week,” I assured him.
Back home, in front of our own Christmas tree I couldn’t help but think that somewhere, most likely not in his mind, but deep in his heart, perhaps even deeper – in his soul — he knows of Christmas, knows of the babe in a manger bringing hope to mankind of eventually having peace on earth, good will to all men, and the promise of ever-lasting life.
And Tannenbaum, with your overly simplistic English words, “We stand before the Christmas tree, a symbol for the faithful,” welcome once again to our house.
Originally posted 2009-12-18 09:42:07.
I strive to be normal among the craziness of living with an Alzheimer’s victim, and keeping normal in mind, I do believe we are doing all right; times when Ken is gentle and cooperative. Then there are times when it seems his mind must go through a session of agitation each day. The hour varies, usually around dinner time, but it can be later and every so often it is later — much later. His neurologist has prescribed a tranquilizer for him and it helps. In addition I give him Tylenol PM to continue his relaxation and hopefully induce sleep, but there are still times when the agitation becomes very intense. Often he paces around the house, washes clean dishes, polishes the sink, rummages through cabinets and the refrigerator until well past midnight. No amount of coaxing will bring him to bed.
In my desperation I lure him out of the kitchen, lock the door and tell him he has a few minutes before the electric company turns off the power. He doesn’t believe me, so I get my flashlight, sneak into the garage and pull two circuit breakers shutting off the bedroom and living room lights. With the kitchen locked and the lights out, I turn on my flashlight and show him the way into the bedroom. Not ready for the blackout, he fumbles at all the switches until he is convinced the power is really off. Within a few minutes he follows my light beam and comes to bed. Another three minutes of relaxation and he is asleep. However, when he falls asleep with so much pent-up agitation, he talks all night long. To get some sleep I turn on the breakers and go to bed elsewhere.
Sleeping in the next room. I was awakened by a thump in the night. The house was once again dark. Not even the night lights which I always leave on were working. With my flashlight in hand, I slipped around the house and found that, indeed, we had no lights. Looking out into the neighborhood, I saw our grid was off, darkness prevailed. Checking on Ken, who was still babbling and making no sense, I went back to bed and fell asleep.
Another thump in the night awakened me once again as darkness still prevailed. In the beam of my flashlight I could see a scattering all over the floor. The day before Ken had spilled a bowl filled with potpourri. “What now?” I asked myself. On further examination I realized the floor was covered with feathers. Scanning the room I caught the bright green eyes of granddaughter Kristina’s cat, Ghouda. Crouching low, her paw holding down a mysterious object she glared at me with squinted eyes. No longer was she the sweet, loving cat that just hours before had nestled demurely on my lap purring contentedly. Somehow, she was transformed into a miniature jungle beast, wild in her intent to keep what belonged to her. I reached and she ran behind the bed, prey in her mouth. No way did I want a dead thing under my bed. To confuse her I shinned the light in front of her. It worked; Ghouda turned and ran down the hall into where Ken was sleeping. Her dead thing was not dead and made its own attempt for freedom. Ghouda slowed to gain control and I grabbed it, which was, of course, a bird — actually a dove. How this small, delicate cat caught a bird nearly a fourth her size baffled me, but then I was baffled how she could be so quick as to catch two humming birds and a mouse. Well, catching the mouse in normal. But all of these finds, she brought into the house each time I left the sliding glass door open.
With me in possession of her catch, Ghouda was not a happy cat, under foot with my every step — a bird in one hand — the flashlight in the other casting dancing light everywhere as I dodged Ghouda and skulked around the house wondering, now what? I had taken time to examine the bird. Ghouda had feasted all down the bird’s back. No doubt there was major nerve damage as I felt no response from the wings. The bird would die, but when. No longer Ghouda’s prey, it was now my bird. How could I allow it to suffer? At 3:00 in the morning what was I going to do?
Spending the first several years of my life on a farm, I observed that life was often brutal. Farm wives during the Great Depression learned, and did, what had to be done. It was normal for my mother to select an old hen that had stopped laying eggs from the chicken coop, do what was necessary in a fast and humane way so we could have chicken stew for dinner. I had watched her many times master the technique of a chopping block and a very sharp hatchet. Remembering Mama, I knew I had little choice, so being a good farm girl, still working with flashlight, I did what I had to do with what I had available, finally wrapping the lifeless bird in a newspaper for burial the next day.
I am sure that if cameras had been rolling, the entire skulking-flashlight-cat-bird drama would have looked like a Steven King horror film. When it was all over, I picked up Ghouda, pushed her out through the sliding glass door, closed and locked it, asking myself, “How normal is this?”
I checked again on Ken. He was fine and still talking. Crawling back into bed, I couldn’t help but think about Ghouda. Animal psychologists advise that when a cat brings prey into the house, the animal is bringing gifts. If Ghouda is planning “The Twelve Days of Christmas” for me, I still have another dove coming and a partridge in a pear tree, to say nothing of the calling birds, all those geese and three French hens. The sliding glass door will be permanently locked.
Originally posted 2009-12-09 08:26:28.
It was Tevye, the father of five daughters, in the Broadway musical “Fiddler On The Roof” who clung so desperately to tradition. Centuries of tradition that would leave the marriages of his daughters to the dubious wisdom of the village matchmaker, and it was those same traditions and faith that brought not only the family, but the entire community comfort and joyfulness in a life of uncertainty and imbalance as they struggled to survive on the bleak farmlands of early 20th century Russia.
While we of modern America don’t relate to the tradition of arranged marriages, nor to Tevye’s kind of living conditions, we understand tradition. As newly married couples it’s tradition that we establish our own traditions; bit by bit, piece by piece all in the process of creating customs and beliefs for our own home. You might say of tradition that it’s part of the marriage foundation whereby solidarity and familiar rituals are established for the children who will come; tradition making the home a secure place — certainly not rules and regulations to bring misery — but fences to establish boundaries.
Most modern traditions are a composite — not entirely new and not entirely old — some from him and some from her, making a blend of all that was and is good. The one constant about tradition, though, is what Tevye eventually learned and reluctantly accepted: tradition cannot be chiseled in stone because tradition changes.
In our early marriage, Ken and I divided the holiday traditions between both of our families. We found ourselves combining generations of traditions until time brought those inevitable changes, eventually bringing Thanksgiving to our house. Looking back there were happy times with family no matter where we spent a holiday. Cousins were everywhere and our children never wanted for playmates, but it was the country home of my parents that was the most fun.
Our young boys established their own traditional game before dinner. The little farm was filled with apple trees, but by November they were leafless with the fruit long gone, but underneath the trees lay forgotten apples browning among the autumn leaves. Playing out-of-doors it wasn’t long before a slow-moving target was splattered with a rotten apple and the games were on, much to the annoyance of the moms cleaning the yuck from a target’s shirt. Warnings and threats could not stop the fun. However, as the years gathered into a combination of children growing up and the need for my aging parents to move closer to us, an end was brought to the rotten apple fight tradition.
Thoughtfully, most traditions are more significant than children’s play. As Christians, it has always been our tradition to begin our meals with “grace,” or a blessing on the food. It isn’t important that this special prayer have a specific title, it’s a pause for all who are present to ponder and be grateful, and for silence to descend for a moment or two, a time wherein we offer gratitude to our Heavenly Father for not only our life’s blessings, but for the bounteous harvest before us. It has been our tradition that the head of the house, the patriarch for us, prepares the family, and the guests, for this brief spiritual time with a few words. “Shhhhh,” is a sufficient attention getter for the children, but for the 20-plus adult guests at Thanksgiving, a word of welcome leads into the blessing of the food, which is assigned to one of the willing guests.
As Ken slowly ebbed away into AD, I would stand with him, even last year, coaching his welcome when he forgot the purpose of his words. This year, however, his participation and even his understanding of the holidays were marked with confusion. Whispering to my son, Keith, I asked if he would offer the blessing on the food. Quietly, he suggested, “Why not ask Kevin to welcome everyone as the incoming patriarch?” It was a good time, I thought, following tradition and passing the powerless baton onto our oldest son now that Ken was no longer capable. Kevin could speak on behalf of his father. With the buffet spread before us, we all stood for the brief formalities. Suddenly, I found myself unprepared for the emotional tug of this transition, this changing of tradition. As the prayer began, I felt my cheeks wet with tears. My friend, Jayne, pulled me to her side. Our youngest, Kenney, his own eyes welling, reached over and held me close, he too felt caught up in the emotion, yet accepting where time and disease has taken our family.
Like Tevye I see our traditions changing as life changes, but unlike Tevye and his people my family and I do not struggle for survival. We have been blessed, even in these troubled economic times, with jobs and a measured amount of security. Our struggle is to live each day caring for this good man ravaged by AD, and to do it with as much normalcy as possible. Perhaps I’ll begin a new tradition and borrow the metaphorical “Fiddler,” placing him on our roof to help me in my constant struggle to continually strive for what is best for Ken and for me………………. Listen………I do believe I can hear a fiddle being tuned.
Originally posted 2009-12-07 19:22:22.
Here we are with Thanksgiving upon us and despite all of the challenges, disappointments and frustrations of living with Alzheimer’s, we know we are still blessed with so much for which to be grateful. Daughter, Julie, and granddaughter, Marisol, will come and cook our dinner once I put the turkey in the oven. A special helper, Little Miss Maya, somewhere between 3 and 4, will also be busy in the kitchen. The rest of the family will arrive around 3:00. It will be just like all of our years celebrating the good things in life, even though the patriarch will be a little out of touch.
So tonight, I’ll take a break from our journey into the fog and remember a recent Thanksgiving when we laughed together as a family and with our oldest daughter. Bright, intelligent, overachiever, Debbie, has a special place in our hearts because of who she is, and because the drummer with whom she walks plays for her a melody sprinkled with sunshine and happiness as she stops to smell the flowers along her pathway of life, which at times proves to be a little impractical; posing an opportunity of teasing for her understanding family
It was Thanksgiving 2005. Ken was nearly two years into diagnosed Alzheimer’s and we were managing very well. Family was, once again, coming for dinner. Our daughter, Debbie, and her husband, Mark, were still living in the San Francisco Bay Area, but some of her grown children had spread their wings and moved elsewhere. Seeing everyone for the holiday was a challenge she was determined to meet — no matter what.
While driving Debbie to the airport in a second attempt to make her flight, she told me of the previous day’s adventure. “”Sorry I’m laughing,” I said, “but this is too funny for me not to write about. Have a good flight and we’ll see you in the newspaper on Thursday, and at home for dinner.” The following appeared in our local paper, “The Daily Review,” on Thanksgiving day.
HAVE TURKEY, WILL TRAVEL
By Ann Romick – 2005
“I wonder how much turkeys are selling for in Utah,” pondered my daughter, Deborah, while planning two days of Thanksgiving. No, it wasn’t going to be turkey and leftovers the next day. It was going to be two full dinners – two turkeys with all the trimmings. Two days of being with family, giving thanks and loving every minute even if it meant flying 1,600 miles round trip.
That’s the dilemma in which many middle-aged parents find themselves when children grow up and leave home, often settling in places far away from where they spent their childhood years. It’s even more complex when there is a second marriage with her kids, his kids and their kids.
“So,” Debbie declared, “problem solved. We’ll just have multiple celebrations of the same holiday, and this year, thanks to the grocer’s ‘Buy one, Get One Free’ offer, I have two turkeys.” All had been well-thought out and scheduled in advance. Fly out of Oakland on Friday night, have one of her grown children meet the plane in Salt Lake, shop and get everything ready for a Wednesday Thanksgiving with the Utah children, their spouses and the grandchildren, then fly back to Oakland on Thanksgiving morning to spend that day at mom and dad’s with the rest of the family in California.
“If I take my extra turkey to Utah,” she concluded, “that will be one less thing I have to think about when I get there.”
One suitcase, one overnight bag, one laptop and one handbag waited at the front door for husband Mark to come home from work, then a short ride to the airport. In the garage, Debbie lifted the frozen fowl from the freezer, wrapped it in a heavy quilt and stuffed the big bird into a large duffel bag before placing it in line by the front door.
On their way to the airport, everything seemed to be going as scheduled — even the Friday night traffic wasn’t as bad as it might have been, although they were running a little late. Dropping Debbie off at the entrance, Mark drove away with a quick peck on the cheek as the officer in charge motioned him to move on.
Getting all five pieces of baggage into the terminal was more of a struggle than Debbie had anticipated, but the check-in line was comparatively short, and with the two cumbersome bags gone, the rest should be easy.
“I’m sorry. You’re 7 pounds over limit,” said the clerk behind the counter.
“I didn’t know there was a limit,” Debbie replied.
“It’s 50 pounds. What’s in the duffel bag?” he questioned, noting the bulk.
“A frozen turkey.”
A bit of an eye-roll look, then, “Can you get the weight down?”
Frantically, Debbie looked for takers. “Does anyone want a 25-pound frozen turkey for Thanksgiving?”
“I’ve already got mine.”
“I don’t even like turkey.”
“Give me the suitcase,” Debbie said. Stepping to one side, she flew at the zippers and threw back the top. Rummaging into the next week’s clothing supply, she removed tees, sweaters and all the sweat shirts in the bag. Off came the jacket and on went item after item up and over her head, causing an immediate spurt of growth from size 12 to size 16 in a minute and a half flat. She shoved the lightened suitcase back onto the scales along with the frozen turkey.
“Close enough,” said the clerk, tearing off the claim checks.
Only two more hurdles to go, thought the now-frazzled traveler, glancing at the clock on the wall. There was still plenty of time with security just ahead, then up the escalator and over to the gate.
Ticket in hand, my daughter was ready to board. “I’m sorry, Ma’am,” said the girl at the gate. “Only two carry-on items are allowed.”
“But this is only a laptop,” Debbie defensively replied, holding up the item not much bigger than a magazine. I need it for my work.”
“Sorry only two items.”
Unzipping the laptop, Debbie stuffed her purse into the insufficient space and pulled the two handles together. “That’s fine,” said the girl in the crisp uniform, glancing down at the ticket. “You are ready to board…..Oh! Just a minute, ma’am. I’m sorry. It seems we’ve given your seat away.”
“But the plane is still here. Why did you give my seat away?” Debbie lamented.
“Please step over to the desk,” gestured the girl in blue. “She will explain.”
“We paged you,” said the desk clerk, “several times.”
“I never heard it,” Debbie said, “and I’ve been here, in the terminal, for the last half hour.”
“And we called your cell phone.”
“Show me the number.”
“See here’s your number.”
“That’s not my number.”
The clerk at the desk was sympathetic, but firm.
“We are very, very sorry, but there is no room for you on this plane. However, we will arrange for you to fly out tomorrow at 2 p.m. at no extra charge.”
“But wait,” pleaded Debbie. “What about my turkey?”
“My luggage and my frozen turkey are already on this plane and the turkey bag has no ID — only my claim check. What will happen to my turkey?”
“I’m so sorry,” replied the desk clerk, desperately trying not to laugh. “Your luggage will be held, but the unmarked turkey bag will probably be destroyed as a suspicious, unclaimed item.”
Slowly my daughter, mother of seven, stepmother of three and grandmother of 10, still smothered by an abundance of layered clothing, lumbered through the airport dragging one carry-on bag and clutching a bulging laptop wondering what else would go wrong, but believing that tomorrow should be better.
She mumbled to herself, “Up and down the West Coast of the United States, the entire airline is laughing at me.”
It felt good to be outside.
“Hi, Mark. This is me. Can you come and pick me up at the airport? No. I didn’t miss the plane. I just didn’t get on the plane. They gave my seat away. I’ll explain later.
Sitting down on a bench to wait, she sighed and vowed never again to travel with a turkey — frozen or otherwise — then dialed again. “Aren’t cell phones wonderful?” she thought.
“Hello, Liz. This is Mom. Will you do me a favor? I didn’t get my flight, but can you drive to the Salt Lake airport and pick up my luggage and the turkey?”
“Yes, the turkey. It’s frozen — in a large duffel bag. The claim number is…..”
HAPPY THANKSGIVING EVERYONE
And yes, after a one-day delay everything worked out just as Debbie had planned.
Originally posted 2009-11-25 07:38:47.
Every time I pick up a current magazine, there is an article claiming some new health tip about Alzheimer’s. There is just one little catch, the dramatic pull quote from the text of the article always carries one tiny disclaimer: “may.” The most recent was all about broccoli and how if you managed to eat enough of it with all of its vitamins and other good stuff, you may be able to avoid the onset of Alzheimer’s.
Personally, I have always liked broccoli and have served it raw, boiled, baked in a casserole and roasted. During the first Bush administration, it was announced on the evening news the succulent vegetable would not be served at the White House because President Bush (senior) did not care for the green stuff. At the time, Ken playfully said, “I’m on his side,” pushing away his portion of tiny trees with thick trunks still swimming in a dash of butter, which I had just served. “No, no,” I replied, pushing everything back in place and adding a couple more spears to his plate. Knowing he was kidding, I went along with his joke reminding him that we would be eating broccoli a few times a week until he was elected president, then he could select the menu.
Years ago, I wasn’t looking for a food culprit when I received a note from the school nurse advising us that our first grader, Kevin had tested poorly during a hearing exam. I didn’t know what to think. Nevertheless, we were advised to see a hearing specialist and immediately made an appointment.
The specialist was a no-nonsense kind of doctor, well-respected and the top in his field. That was good. However, his bed-side manner was the pits. That was not good.
Doctor Grump told us Kevin’s problem was common but rather serious. His eustachian tube was somehow blocked which formed a vacuum condition causing mucus to be sucked into the middle ear. If allowed to solidify total deafness would occur. The good news: eventually, the boy would outgrow the condition, or as soon as he learned how to pinch his nose and pop his ears several times a day, that too would solve the problem, but left untreated Kevin would eventually become deaf.
Treatment began immediately. The ear drums were pierced and tiny tubes inserted breaking the vacuum and releasing the built-up mucus. The difficult part was keeping water from entering the ear and causing infection and other problems. We returned bi-weekly for checkups.
As a conscientious mother I tried doing my part by not only supervising bathes to avoid water in the ear, I also thought of ways to cut down on mucus-producing foods such as milk, peanut butter and whatever else I could research, cutting back on that which might be contributing to Kevin’s problem. When I mentioned what I was doing to the doctor, he scoffed, looked at me with disdain and said, “Perhaps his production of mucus, whether it be too much or too little, is due to the fact that today he is wearing a red shirt.”
Dismissed by his sarcasm, I felt humiliated and insulted, but I said nothing more. I was young enough to still be awed by tremendously skilled doctors who were supposedly all-knowing, and in my ignorance believed them to be some kind of demigods. I have long since learned better, and after he learned to pop his ears, the way you do to relieve the pressure from air travel, Kevin’s ears were fine. Time does bring about change.
It would seem that since President Reagan became a victim to Alzheimer’s, AD has fallen into a more respected category, arriving as one of the “Diseases of the Week,” meaning the medical community is paying it much more attention, and that’s a good thing. Meanwhile theories abound. “NEW ALZHEIMER’S BREAKTHROUGH,” touts the announcer for the evening news, “Stay tuned.” For families and caregivers who, for years, have watched their loved ones disappear into nothingness, the stunning news offers hope. However, the announcement is no more than a tease on a slow-news day. With no significant developments in AD research, the awaited information is nothing new, and hope is once again dashed against the bitterness of disappointment. No news is actually better than old and rehashed theories. If you notice, the articles in today’s magazines are high-lighted by wonderful attention getters: leading captions, great photos or interesting illustrations, but always contain escape words such as “may” or “might.” It would appear that every form of media is filled with some sort of advice about ways that may help people avoid Alzheimer’s. The list is endless and covers all sorts of foods and life styles which could be of benefit: avoiding belly fat, being in good physical condition, running, walking, working out, and generally living a near perfect existence.
Living with a man who now has severe Alzheimer’s which began nearly six years ago, I find all of these shots in the dark extremely irritating, even cruel, because guess what? Ken pretty much fell into that category of living a good, clean, near-perfect life when it came to being devoted to physical activity, living healthy and eating right, including lots of broccoli; as did his mother and father, his sister and my mother, all of whom still fell victim to AD.
So what does all of this rehashed information bring to us? Not much, other than a lot of people are writing a lot of speculative and redundant articles about Alzheimer’s disease. So, theoretically I can, perhaps, offer some speculative advice of my own by taking a tip from Dr. Grump. Perhaps people may avoid falling victim to Alzheimer’s by wearing a red shirt — or a purple dress or a pin-stripped suit — or whatever. It makes about as much sense as eating lots of broccoli.
Originally posted 2009-11-19 08:19:39.
My friend Dorothy cared for her father following the death of her mother at 94. Dad was 96. The couple married in their early 40s, had three girls, and managed to stay alive long enough to celebrate their 50th wedding anniversary, plus a few more before she passed. Had the old man been given a choice he would have continued living in the family home by himself because he felt capable. He never owned a car, nor did he drive. Instead he rode his bicycle to places he needed or wanted to go, often declining a ride offer. His dear wife either walked or accepted that offer for a ride to get her to those places she needed,or wanted to go.
A self-taught man and an avid reader Dorothy’s dad would sit for hours, the newspaper held up to his nose as he laboriously studied each blurring word through what we all called his thick “coke-bottle” glasses. He was determined not to slip behind on what was happening in the world. In addition to his fading eyesight, Dad’s hearing faltered even with the best of hearing aids. Therefore, conversations were cranked up a few decibels allowing him to share some of his insight. A delightful old man, with a clear mind, sagging shoulders, a hesitating gait and a good black suit for church come Sunday morning, he could still preach along with the best. Surrounded by a loving family, grandchildren and great-grandchildren he often lamented he was alone and lonely.
“But, Daddy,” Dorothy would say, her head cocked to one side trying to convince him that life was good and worth living, “you still have us.” “I know, Sweetheart,” he would reply patting her outstretched hand. ” but with Mama gone, and all of my friends gone, I don’t know why the Lord keeps me here. I need to be with them. I miss my friends.” Dorothy’s dad lived to celebrate a full 100 years. Ken and I went to the party. A few months later he joined his wife and friends.
Back then, during our middle years, our lives sprinkled with grandchildren, family and friends intermingling; none of us, neither Dorothy or husband, John, nor Ken and not I fully understood why the old man couldn’t grasp his still rich life. If all friends, contemporary friends, were departed, certainly with sadness, life had to be all right because there was still family. Right? Wrong! Mankind thrives best when they have both.
Friends and siblings are those with whom we grew up. They laughed at our skinned knobby knees and we cried together at the movies, and, again, when we got dumped by that really cute guy or gal. Their concern was pure and meaningful. Friends were with us at our wedding, wishing us well and cheering that the groom wasn’t that jerk who wouldn’t take no for an answer, and we returned the favors when they stood at the altar with their chosen mate. As friends we all posed for pictures with our babies and our families grew up together. Friends shared all of the world and national events of our parallel lives, making our period in time important beyond measure for us. We wore the same fashions, the same funky hair styles, sang the same songs and danced to the same music. The “good old days” are still conversational when we get together, our sentences beginning with, “Remember…….” Friends remember the way we remember. Now, looking back we see our children have developed their own important friendships, and how their friends are loved by us almost as much as we love our children. Like us, held together within our own generation, their commonality will keep them close in their own social capsule of time.
With family, and as we are now the seniors, family is mostly our children who are only a phone call away and here at a moment’s notice, it’s also them we call first with good news or bad. But it’s still our generation of friends who know and understand us, whether they be newly acquired friends or friends since our childhood. Some of our friends have already passed on, and we miss them terribly. Now I understand the longing of Dorothy’s dad. It’s a special missing, a special kind of loneliness. Yet, there are many friends who remain and for them I am grateful. They seem to have an uncanny sense in knowing when to call or drop by often bringing us small tokens of their love when their presence is more than enough. We still share one another’s joys and sorrows, remembering the good times of our younger lives — and the bad — and they help carry our heavy burdens of illness, no matter what the disease. Friends and family — family and friends — I am so grateful they are all a part of my life. What would we ever do without them?
Originally posted 2009-11-14 09:03:01.
The first week of November is a different time of the year for a 40th Class Reunion, but for whatever the reason, I was really looking forward to having our oldest daughter, Deborah, travel from Utah for the event and spend a few days with us, as well as her children and grandchildren. She and husband, Mark, moved to Utah when he was downsized from his graphic arts job, located just south of San Francisco, with a package deal for an early retirement.
Wisely, they took their California money, retirement from her school teaching job and settled in Ogden. The good part for them is they have several children who also live in Ogden; hence, grandchildren. So wherever they are — Bay Area or Utah — there is family, but we miss them.
Our other four children, three boys and a girl (correctly put, it should read three men and one woman) live no more than an hour away from us, and that’s a good thing. In the event of an emergency for either Ken or me, someone is only moments away.
Interesting, though, whether they live a mile away or 800 miles away, Ken doesn’t know any of them. When Debbie arrived she greeted her father with a non-threatening hug and, “Hi Dad. I’m your daughter, Debbie.” He viewed her with suspicion and replied, “I don’t know about that,” which is similar to the same response he gives the others, even me. His very brief moments of knowing me are sandwiched in between his mood swings amounting to not more than 10 to 15 minutes each day.
Even if the visit is lengthy it doesn’t matter; further recognition of his children does not take place as the hours move on. All of us are just “someone” to him, as I was only “someone” to my mother as she slipped away into the more advanced stages of AD. It was the same way with Ken’s parents, Rose and Nick; we were nobody, welcome nobodies, a few middle-aged people who kept showing up for a visit. Their memory of family was and is gone.
I’m not sure if acceptance is an instant thing or if it’s gradual — probably a little of both. When those first tears stop is that total acceptance? Or is it when the patients look at the beautiful faces of family and sees them not? I’m also certain that the timing is different for each family member. Furthermore, acceptance isn’t just about the disease, there is always something new to accept as the victim spirals down the bottomless staircase.
In a recent response to my Blog, a follower mentioned that when the family fully accepts that Alzheimer’s is terminal, they could better come together in determining what is best for the victim. That’s true, but, again, each case is very different and must be carefully evaluated.
For Ken’s parents and their particular situation and condition, we found it best to place them, at different times, in full-care facilities. My mother, however, remained in the family home which included my father (with a live-in caregiver) until she took her last breath. These decisions even in retrospect, for all of us, were what we believed to be best, not only for the AD patient, but for all concerned.
Never meaning to undermine the wrenching decision of children being called upon to put their parent or parents in a care facility, that relationship doesn’t compare to decades of intimacy and oneness shared by a husband and a wife. Nor does anything compare to the agonizing decision reached by the well spouse who finally must declare, “Now is the time.” And then, it is with support of family, all agreeing, that placement is necessary, which includes that which has already been declared and accepted: Yes! Alzheimer’s is terminal.
Originally posted 2009-11-11 08:18:50.
November 5, 2009 — I grew up hearing the phrase, “Where there’s life, there’s hope.” I saw that emotion — hope — shining in the eyes of a desperate mother more than 30 years ago in an Idaho hospital, and I shall remember it always. Our oldest son, Kevin, during his first week at college had been in a horrible automobile accident and lay in a deep coma for three days while we waited for the unknown seeing him minutes at a time in ICU, and then more waiting until we were permitted to see him again. We met so many good, kind and concerned people during our stay near his bedside. Some had family members in various stages of recovery so we all shared in the profound commonality of grief and worry. However, uppermost in all of our thoughts, struggling to banish any negativity was hope.
We watched our son lying there, seemingly so calm and relaxed, outwardly unscathed by his ordeal, all injuries being internal, including a severe concussion, leaving us to wonder if his brain had been permanently damaged. He looked so normal in slumber except for the occasional outbursts of profanity. “It’s all right,” said the doctor. “Base man is injured and angry, and he hurts. That’s how he responds. It’s all right that he swears.”
There was another couple whose son had been in ICU for some time until his doctor had him moved to another ward. Still hooked to his IVs, he needed additional nourishment so they inserted a feeding tube. Ken and I visited with the parents as they watched over their 15-year-old who had been returning from a football game with a friend at night, his friend at the wheel. It was dark and the RR crossing was unmarked. Undoubtedly, they never knew what hit them, and now he lay there still unconscious, but alive.
Unlike Kevin, the boy was rigid, his hands curled into tight fists, his body responding not to any stimuli. We spoke very little. What could we say, just giving them a hug for comfort. My inward thoughts told me this boy would not recover, yet when I looked into his mother’s eyes, I saw the familiar agony and worry we all shared as we hovered over our injured children, but beyond that I could see there was also the most tenacious of all emotions: hope. The boy was alive and where there’s life, there’s hope.
“Mr. and Mrs. Romick?” asked a smiling nurse. “Your son is awake.” We wondered if he would recognize us — he did — but it would take a long time before he fully recovered. We were able to fly him home two weeks later to begin his journey back into our lives. I have always wondered about the boy from the train wreck. We didn’t see the parents again following our brief visit. Was he able to overcome those tremendous odds? Were the prayers, faith and hope of his parents enough to bring him back? I hope so.
And it’s hope that sometimes levels our roller coaster ride with Alzheimer’s — at least from time to time. When Ken has longer periods of being Ken, and he calls me “Sweetheart,” I find myself hoping. Treating him holistically, I must have faith that what I give him in the way of supplements will do him some good, even though I have absolutely no medical training, and it’s because of hope that I continue. After all, the medical community doesn’t have much to offer.
Today, it was a bit of joy and laughter from both of us that gave me my needed spark of hope. We were out shopping and just before we returned home, I said I should stop at one more store. “Where?” Ken asked. “The ahh Dollar Tree,” I answered. Having a bit of a hearing problem, he hesitated, looked at me a little puzzled, yet smiling and said, “The Adult Tree?” Then he laughed repeating himself, “Adultery — do they have a store for that?” Then we both laughed. Poking him in the ribs I said, “You made a funny.”
We had a wonderful afternoon, but at sundown, the moods returned as did the agitation and other symptoms of AD, but I was nourished with my spark of hope. Reality check: I know after nearly six years that his brain is ravaged, yet if he yoyos with good times to mellow the bad, then perhaps it will postpone that awful day when I must consider alternatives — placing him in a full-care facility — I don’t really know. Meanwhile, I too can keep in my thoughts that where there’s life, there’s hope.
Originally posted 2009-11-05 06:50:51.
The ghosts, goblins, fairy princesses and super powers have come and gone from our house, leaving no tricks, their bags bulging with treats, meaning another Halloween has passed. I enjoy the sporadic parade of kids in masquerade. (I don’t even mind the older set as long as the candy holds out, their voices already hitting the low notes of “Trick or Treat,” who come later in the evening). In the past so did Ken. This year he made no recognition of the holiday when I placed pumpkins on the porch, an immense spider clinging to an equally over-sized web hanging from the roof, and a friendly ghost stuck in my juniper bush which was sprinkled with candy-corn lights. The house looked festive and inviting and I raced to the door with my caldron of candy at the first ring.
I could see the groups of small fry in costumes were confusing to Ken, who managed to get to the door in front of me offering out a jumbled scolding to a mom and dad with little ones. I pushed in next to him explaining “Alzheimer’s,” adding, “You didn’t get your candy,” as they all scurried down the walk. The parents, looking a bit unsettled, shouted over their shoulder, “That’s okay.” I moved my chair next to the door so it wouldn’t happen again. I strive to be as “normal” as possible, but as Alzheimer’s gets worse, the problems get bigger and more difficult to manage.
Soon, Granddaughter, Jessica, 10, arrived looking extraordinarily beautiful, glittering petals covering the skirt of her fairy princess costume, a jeweled snood for her hair and wings with which to fly, everything stitched and put together by Sabina, her talented mom. Jessica, while enjoying the door bell ringing part almost likes being the hostess more than the visitor, taking over my duties handing out the candy while her parents chatted with me and Ken, who soon relaxed, his son’s presence and friendly banter calming him.
As I survey the growing problems as caregiver to my husband and his Alzheimer’s, and all the others who share our experience, I also think of the little ones out on Halloween night with plastic pumpkins and decorated bags carried to collect their evening’s loot. As young as they are they too have problems. For them their problems loom just as large as our problems are to us, which reminds me of my seven-year-old friend, Robert.
While visiting grandparents in Northern California Robert was allowed to pick out a pumpkin at a nearby pumpkin farm. Selecting it from the vine, he helped load it into a wheel barrel, and then into the car. Aunt Chrissy laughed and said that she would buy the 95 pound pumpkin for his birthday.
At home, the gift sat stately and firm on the front porch until some thoughtless, mean-spirited thieves took it while Robert was at school and his mother, Malena, away from the house. Coming home to an empty porch Robert was inconsolable. He sobbed until Malena thought his heart would break. Tearfully he asked his sympathetic mom, “What if the thieves are already making pumpkin pies?” How could a first grader understand the cruel ways of the world, or why anyone would take his special gift. The theft of his Halloween-birthday pumpkin was, to Robert, the biggest problem he had ever encountered, and a problem he was unable to solve. Our story, however, has a happy ending when a family friend, who is also a police detective talked with Robert, assuring him the “force” would see that his pumpkin was found and returned. Meanwhile, our detective located an equally large pumpkin in an equally busy pumpkin patch and, back in full police uniform, delivered it to Robert’s porch.
Problems and adversity are a necessary part of our growth in life and they have no age preference, whether they be problems dealing with dirty, rotten scoundrels, age and illness, business worries, problems of the heart, families in crisis, or young marrieds’ problems making their budget stretch to cover the mortgage. Like pain, no one can measure the severity of another’s misery, nor can anyone calculate whether a problem is big or small — only he to whom the problem belongs is allowed to make that distinction. One thing, however, is for sure: no matter what size the behemoth which might lumber into our lives, the enormity of it is always lessened by love, concern and at times action, when needed, from those who care: sometimes a stranger, family members, friends or a good and wonderfully kind police detective.
Originally posted 2009-11-02 07:39:37.
“Have you thought about looking into a care facility for Ken?” asked my neighbor. “Of course,” I answered, closing the issue and moving on to another subject. What I wanted to say was, “Having to place my husband in a full-care facility hangs over my head like an enormous lead weight every single day of my life, and I wait constantly for it to drop.” Because we are friends I didn’t feel she had overstepped her bounds by asking me, after all we have known one another since our children were young. But I did feel the intrusion when she called a family member and told them Ken belonged in a home. This being my fourth trip (and the most difficult) down Lost Memory Lane, there is one thing I know for certain: no matter how demented their state of mind, people with AD and other dementia-related illnesses are happiest in their own home, surrounded by loved ones, and when and if the time comes for placement, the decision will be made by family, doctors and the guiding hand of clergy. My most fervent prayer is that the Lord will call him home before I have to make that placement. Keeping Ken with me for as long as possible is my goal.
If “as long as possible” sounds vague, it’s probably because it is. I have certain established criteria which will help me and our family reach that awful decision: if Ken becomes violent, if he can no longer care for his personal needs, or if he becomes a danger to himself or others. Those remain uppermost in my mind, but I know other problems may arise of which I am presently unaware. I will cross those bridges if and when I come to them. I also know removing him from his home will be the most difficult thing I will ever do. “But you would have so much more freedom,” people have said. “To do what?” I ask. Admittedly, caring for any loved one who is terminally ill is difficult, wrenching, exhausting and depressing, but would it be less painful to visit him or her in a care facility only to have them weep at your leaving and beg to go with you. There are no easy answers and there is no easy decision, so it is best for those who mean so well not to become part of the problem.
I find the further down the AD staircase Ken travels the more changes take place: changes in his ability to understand, his awareness, comprehension, personal care, his physical abilities and even his willingness to cooperate which I know is normal for the disease. All of these changes and more will be factors in determining when and if he has to placed in a home. However, the fascinating part of this insane journey (if I can use the word fascinating), at least with Ken, is this fact: his trips yoyo up and down. There are days when his decent seems endless; speaking with little sentence structure, groping for needed words, unable to take simple directions, more anger and frustration than usual, difficulty in making the simplest of decisions and general annoyance with me the majority of time. After a few days of this sudden and bazaar behavior, I tell myself, “Tomorrow, I’ll call the family, and we’ll talk.” But when tomorrow comes, he’s better.
The medical community has said that once memory is gone, there is no recovery, but I wonder about that. As I have watched him regress over the past six years, the decline is very definitely dramatic. There is no comparing the Ken of 2003 and the Ken now. I’ve watched and listened to him drop through the years, lose memories and his age year after year: forgetting his career, me, his children, and then dwelling for a time in the Navy, dropping down again to a time when he insisted he needed his pajamas before he could get ready for bed. During those latter times I call him “Buddy,” the nickname his parents gave him. Furthermore, when he’s Buddy (who is about 12) he wonders why he hasn’t seen his mother and father, and asks about his sister, Loretta. Loretta, I tell him, has her own home, but telling him his parents are deceased is unacceptable to him, so I tell Buddy they are on vacation. Being just a boy Buddy tells me he is not married, never has been married, has no children — only a sister and his mother and father. Another personality in the mix and to whom I refer is Mr. Hyde, who also owns our house, but is older and married, but not to me.
Other times, from out of nowhere, Ken will look at me and wonder, “Are you my wife?” I assure him that I am adding, “Your wife needs a hug.” Eagerly he obliges, and in our embrace we fit into each other’s arms as if these wretched years have never been. Feeling the comfort he remarks, “Oh, this feels so good,” and then he rubs my back as he always did before letting me go. Ken invites me to sit with him on the couch so we can watch TV together with him asking, “Are you okay?” and he reaches for my hand. My husband remains for several minutes before that mysterious fog wipes away the memory and he becomes one of the other personalities, dismissing me as some annoying intruder. I’m grateful for the interlude.
Physically, Ken is in very good condition, a little on the skinny side. How long the two of us will ride this crazy roller coaster called Alzheimer’s is an unknown factor, but we will continue riding it together until — and if — there comes a time for our ride to stop. Meanwhile, I am the one, with my chosen council to councel who will determine when a change needs to be made.
Originally posted 2009-10-28 08:06:27.