REMEMBERING EASTER BEFORE ALZHEIMER’S
April 18, 2014 – Our life, Ken’s and mine, hasn’t always been centered on Alzheimer’s the way it is today and has been for the past 10 years. There were times when we were young and romantic like so many other couples marveling in the magic of new love. Then as the years added up we became much like our older generation had been: comfortable, and still loving one another and having our romantic moments and memories from time to time.
LOVE IN A PUDDLE
It was one of those ordinary days in early April several days before Easter. My sister Janet and I had been shopping even though it had been raining we still ventured out to make sure we had sufficient jelly beans and shredded grass to fill baskets for the little ones. As we left the store and headed toward our car we noticed a small package which had been dropped at the edge of a puddle. Actually the flat bit of plastic could have been empty, nevertheless,we stopped and picked it up. Inside was an Easter greeting card protected from the rain by the plastic bag. We could have, should have, returned it to the store, but in our haste to get home we didn’t. Instead we sorrowed at the purchaser’s loss, obviously someone in love who had found the perfect card for the object of his/her affection.
THE MAGIC OF WORDS
It began, “Until I fell in love with you.” It went on with beautiful prose commenting on a smile lighting the whole world, one touch that changed a life, and continuing that, “I never knew that I could love someone so deeply, completely, and endlessly until I fell in love with you.” Concluding with “Happy Easter,” the greeting was meant for new, young love sharing the season and holiday of new life. Janet and I both read it a few times. She thought of her deceased husband, Douglas, wishing that she had found and sent him the card, but certain that he knew how much he was loved and appreciated.
ALZHEIMER’S AND NO MEMORIES OR UNDERSTANDING
The card remains in my box of greeting cards. At the time, we shared it with Ken when we got home, but I never sent it to him, believing we were too old for such sweet sentiment. And now with Alzheimer’s he is no longer able to understand or remember, I hope like Douglas that he somehow knows how much he was loved and appreciated. For me, though, I didn’t need the card because when he often told me that he loved me he added, “And I’m the luckiest man in the world to have married you.” One can’t ask for more beautiful prose than that.
A CULTURAL EXPERIENCE
April 11, 2014 — Long before Alzheimer’s became a constant in our lives, Ken and I visited Puerto Vallarta, Mexico celebrating our 25thwedding anniversary.Actually that’s not correct. Ken’s mother Rose was already a victim at the time although her cognitive loss was just beginning. Of course AD was something new in our lives and there wasn’t much information about it’s cause, how to treat it or who would get it. Information was sketchy.
We had observed Rose, seeing her inactivity and depression, and thought other interests she could be pursuing rather than spending her time either working in the garden and then just sitting with Nick in front of the TV. Which doesn’t mean her garden work was of no value. Of course it was, and the vegetables they grew and the blooming flowers brought her joy, but the questions remain, “Did she feel valuable?” “Did she feel needed?” “Did she feel she was a contributing member of the family – of society?”
OBSERVING FAMILY LIFE
Our accommodations in Mexico were located a short walk down the beach. Each morning we ventured into town where the shops were located. Walking rather than taking a cab gave us an opportunity to see the community at work and at its best. We saw families eating out of doors on hot days, children playing with their pets, and women caring for the family. As we crossed a bridge over a small river we noticed one of the women with small children and her basket of laundry. She was washing clothes in the river and all the while, she kept her eyes on the children. By her age we assumed she was the grandmother who must have been helping a young mother by doing laundry and watching the children. We knew nothing of their private lives, but we also saw happiness and laughter on the face of the grandmother.
FEELINGS OF WORTH
I wondered about cases of Alzheimer’s and other mind diseases in parts of the world where all generations contribute to the well being of the family. And our question haunted us. Do many people, living in our modern world, with a form of dementia have feelings of worth and value? Do they believe they are contributing? Or do they succumb to boredom and depression?
THE MYSTERY OF ALZHEIMER’S
What we saw was a very primitive way of doing laundry and yet it was productive. Certainly we didn’t wish for Rose to be doing the laundry in the local river, but we did wonder how valuable she felt sitting in front of the TV when she would rather be doing some handy-work or sewing. She had put away this type of activity because her husband Nick would rather she just sit quietly with him. Does boredom and unhappiness, a lack of contributing, sometimes push an individual over the edge into a place of defeat, despair and giving up? It’s all part of the mystery of Alzheimer’s.
Possibly spring is my favorite time of the year, and why not? The joy of this first full month of awakening abounds with an air of light rain and freshness. Tiny leaves of green with fluted edges magically appear on gnarled branches, soon fashioned into ruffled curtains and fluttering screens for our fine feathered friends yet to come. Blossoms and daffodils burst open almost overnight in playful confusion reminding us this is only the beginning.
Treasures from the past come to mind: verses and poetry ring with familiar and loved words and praises all about this season of new life.
“My beloved spake, and said unto me,
Rise up my love, my fair one, and come away.
For, lo, the winter is past, the rain is over and gone,
The flowers appear on the earth;
The time of the singing of birds is come,
And the voice of the turtledove is heard in our land.”
I do believe I am giddy from the sun’s warmth for this evening I feel content. That’s what spring does: even with Alzheimer’s alive and destructive in our house
“I’ll rememberApril and feel glad.
“I’ll be content you loved me once in April…….Your lips were warm and love and spring were new……….”
MUSIC HATH CHARM
During the music era which Ken and I enjoyed in our youth there are so many samplings of words and music to be remembered about spring and April; songs to lift a slothful spirit, words that speak of ardor, moonlight and roses, kisses at the garden gate, and writing love letters in the sand.
We became engaged in April while background music somewhere spun romance and mood as the Big Band Era began to fade into the past. “I love you…….. hums the April breeze. I love you………echo the hills.”
“Though April showers may come your way….. they bring the flowers that bloom in May…….” Who wouldn’t feel better singing that happy song? “And if it’s raining, have no regrets…. It isn’t raining rain you know; it’s raining vi-o-lets……” Ending with a positive refrain: “So keep on looking for the rainbow……… and listening for a song……… whenever April showers come along.”
BUT WE ARE STILL HERE IN OUR ALZHEIMER’S WORLD
With melodies still running through my head it’s time to put away distant memories. As I see Ken I am reminded of where he is in this Alzheimer’s world, where we really live with good days and some which aren’t so good. I know that for now, no matter how content I might feel, life goes on and my tomorrows will be different. Accepting that, I find our music from long ago also brings me another message, “You promised that you’d forget me not………..but you forgot to remember.”
Musing about former springs and better times I write my own Song of Solomon, but without sadness. For I am filled with gratitude that I do have words, music and memories of happier days and places, and gratitude believing that there is life after life and the continuing of us. For now, though, and in a mood of thoughtful provocation I write:
My beloved spake with his eyes, and said unto me,
“I cannot rise up and be with you as once we were.
“For, lo, my winter is not past, the clouds in my mind are not gone,
“But flowers of the earth are there for you to have joy,
“As is the singing of the birds that will come.
“And listen for the voice of the turtledove heard in our land;
“The cooing and caressing of tender, new love.
“And remember them all – for me.”
This gallery contains 1 photo.
Whether longing for the home we grew up in, the home we lived
in as a grown-up family, or even the Heavenly home we left to come to earth, the the longing to go back home is always there. The following is a popular repost, originally on the blog a few years ago.
How many times during the length of a marriage does one of the partners nudge the other whispering, “Let’s go home.” It doesn’t matter how great the party, how good the movie, how grand the evening or even how perfect the vacation, there comes a point when it’s time to go home.
Children aren’t much different either; from a skinned knee on the playground to puppy love’s first rejection, the yearning is the same, “I wanna go home.” The youthful statement is often accompanied by sobs, pleadings when bored or whining when the pleadings aren’t heard.
Poets write verse about home, lyricists link home to a melody, our service people long for it and commuters drive for hours to get there. Back home is where mom and dad live, a new home is what everyone wants, and home is where we are when the door closes. A sanctuary from the world, our private abode; a place to hang our hats, kick off our shoes and relax in front of a warm fire and hopefully, a place where love is.
But what happens when you are home and you don’t remember it being your home? Then the lament changes to, “When are you going to take me home?” Each day, during a certain mood, Ken tells me that he wants to go home, becoming very anxious about getting there. No matter how often I try to reassure him, “This is your home, Ken,” he becomes less and less likely to recognize what was once so familiar. “Look around and you might remember the family room you built many years ago, and come into the living room,” I suggest, guiding him along the way. “See your father’s Marine photo on the wall, and your parents’ wedding picture, and right here is the family portrait, the four of you: your mom and dad and your sister, Loretta. And look at you at 15, aren’t you handsome?”
Up until yesterday, the tour seemed to bring him back into, at least, some reality of being home. However, yesterday he looked at his parents’ photos, glared at me and asked in an accusing manner, “Who gave you permission to hang my family pictures on this wall?” At that point, fearing he would rip them down, I changed the subject and eased him into another room. Forgetting the photographs, he still wanted me to take him home.
A few years ago, we attended the funeral of a good friend whose brain had been ravaged by Alzheimer’s very rapidly. For their privacy, I’ll call them Luke and Paula. Luke was a successful orthodontist at the peak of his career, being struck down at a comparatively young age. Following diagnosis, he immediately sold his practice, and the couple moved mid-state to be near their son and his family. While Paula battled Luke’s disease, I battled Ken’s so we didn’t keep in touch. Seeing her again, I gave her a hug and despite her brave front, there were tears when she said, “He’s home, he’s finally home,” explaining how often he pleaded for her to take him home. Her reference, of course, was the Heavenly home from whence we all came. However, I couldn’t help but wonder if he missed their place here, in the Bay Area, having been in their new home for such a short time it made sense that the old house held more memory.
I also believed Ken wouldn’t go through the “wanting to go home” phase because we have lived in this same house for more than a half century. I was wrong. As he regresses, he becomes younger and younger, often asking if I have seen his mother. When he does, I know he has become the personality I have named “Buddy,” his parents’ nick name for him. Undoubtedly, I thought, the home he has in mind is where he grew up in Berkeley, or is it? Even as his father, Nicholas, descended deep into Alzheimer’s he would beg to go home. Is it possible that Ken isn’t asking to return to his childhood home on 10th Street after all? Perhaps Paula is right. In their tormented minds, were — are — they calling out to Him to take them home? Could their spirit be remembering what Wordsworth suggested?
“Our birth is but a sleep and a forgetting:
The soul that rises with us, our life’s Star,
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come
From God, who is our home.”
CONTAGIOUS? NOT EVEN LIKE A BAD COLD
March 14, 2014 – So, is it anything like measles? Absolutely not. If it was a contagious disease family and friends would run for hills. No chances taken. And for good reason. Of all the illinesses or diseases on the planet, these mind diseases, forms of Demetia, are among the most dreaded, spreading both fear and worry to families everywhere. I had just finished reading from the Alzheimer’s Reading Room where Bob DeMarco republished this informative article about how Alzheimer’s spreads throughout the brain. So, in a sense it is contagious, but only within the sections found in the victim’s own brain.
A KIND OF A LEAK
However, according to a recent paper, “Spreading of Neurodegenerative Pathology via neuron to neuron,” from the University of Linkoping in Sweden, and published in The Journal of Neuroscience under the leadership of Martin Hallbeck and his team including Sangeeta Nath. :Lotta Agholme, Firoz Kurudenkandy, Bhorn Granseth and Jan Marcusson.
The group found that the disease spreads in the brains of diseased patients following the same pattern. The illness begins in the entorhinal cortex, a part of the cerebral cortex, and then spreads to the hippocampus: areas which are important for memory. Over time pathological changes continue to take place in more and more areas of the brain as the victim becomes worse.
THE GUILTY PARTIES
With Alzheimer’s two proteins are identified: beta amyloid and tau with tau being found in the axons – outgrowths that connect between neurons – where it has a stabilizing function. The beta amyloid appears to have a roll in the synapses; an area where the neurons transfer signal subtances to each other. Apparently, something happens with these proteins. Autopsies reveal abnormal accumulations of both
PUZZLEMENTS FOR RESEARCHERS
Why these abnormalities occur is an unknown factor, but what is known is that the accumulations or plaques is not what damages the neurons. It’s smaller groups of beta amyloid called oligomers that seem to be the toxic form that gradually destroy the neurons and shrinks the brain.
So, though it may spread across generations, it is not contagious.
This gallery contains 1 photo.
ILLNESS BY ASSOCIATION
March 8, 2014 – Well into Ken’s Alzheimer’s and following my sister’s visit she said, “How do you do this day after day?” She had lost her husband after a few years with the two of them battling his cancer. “I’ll take Douglas and cancer any day, I don’t know how you can do this and keep your sanity. ” she concluded. “I have learned to just live in the moment,” I said hardly realizing it was my way of coping with losing to Alzheimer’s, the man I had married more than half a century ago.
OTHER WAYS OF COPING
I recently read an article about coping and how, in the long run, there are times when the wrong mechanism of coping can be crippling to the caregiver.
With my mother, also being a victim of Alzheimer’s, and my father of sound mind, but with the limitations of growing old with all of its aches and pains. I was their caregiver. They lived less than a mile from us in a small, comfortable home which suited their needs perfectly. Ken and I helped them find the small home and move, with the aid of family, from their country home in Sonoma County, California back to the San Francisco Bay Area.Together Ken and I had painted, planted and spruced up the place for their continuing comfort, while our son Keith poured cement for walks and a wider driveway.
Within the next two and a half years after the move they both passed on. We cleared the house, put it on the market and their estate was settled. Once the house was sold I left the keys on the kitchen counter and walked out through the front door. Because it was the last place where my parents had lived I vowed I would never go there again. Nor would I visit anyone on that street. .
UNDERSTANDING WHY — SENTIMENT
Once my parents were gone, my mind closed on the home and the neighborhood.
Silly, I know, but I wanted to remember everything just as it was. If I didn’t see the house at the end of the street, I could still imagine they were still there, alive and well. Furthermore, I didn’t want to see the house or the grounds fall into disrepair and neglect; the way it had been when we bought the property as a fixer upper.
Reading on in the coping article, I realized, with my decision, I had nipped my freedom to visit former neighbors on that street; neighbors we had been fond of, and who were helpful with Mom and Dad.
I read of a similar coping mechanism about a couple who had just signed the papers to purchase a new home. That same day their child died of S.I.D.s. As a result, and as the years passed, they moved from one inadequate rental to another all because they related buying a home to the death of a child, which in reality one had nothing to do with the other. After several years of marking time, the couple took back their freedom and purchased a new home for their growing family.
Romantic times and places are so much a part of nostalgic memories, but even those must not allow circumstances such as a dreadful disease like Alzheimer’s, sabotage your freedom to move forward in life. Trips to the beach, the mountains or a favorite restaurant can often trigger sadness because your loved one is terminal so the spousal caregiver is reluctant to visit those favorite places without their other half. Of course there will be moments of melancholy, but the best way to feel alive once more is to jump right in remembering your sentimental journey alone. Then allow the past its own place, enjoying life once more as the deserving person you are.
This kind of coping mechanism is actually based on sentiment or superstition rather than fact. Think of an anniversary where there had been an accident in which you were seriously involved. Therefore, you have decided that on that date, you will never get into a car again much less drive. Statistically, a similar accident with the same conditions occurring on an anniversary date is highly unlikely. The days of our lives are not jinxed, nor do accidents occur because of past happenings on certain days or dates. Let it go and take back your freedom. Face your demons and live your life.
CAREGIVERS AND THE HAPPY PAST
February 22, 2014 — One of the spillovers of depression, one of the many battles fought constantly by caregivers, is drifting back into the past where memories evoke happier times before a dreadful disease such as Alzheimer’s took such precedence in one’s life. But we have often been counseled not to dwell in the past for long periods of time, having been counseled that the past is a great place to visit, but you don’t want to live there. It may be true, but remembering happy times is often good for some of the dark moods that might burden you.
BENEFITS FROM ENJOYING NOSTALGIA
According to a new body of evidence, a trip back in time actually wards off loneliness and anxiety. The New York Times reports that wistfully recalling old memories, researchers have found that this mental journey actually makes people behave more generously and they feel closer to their romantic partners. However, that sentimental escape just isn’t the same when the romantic partner has been stricken with a disease – any debilitating illness – but especially Alzheimer’s which robs both the victim and the caregiver of being able to share memories.
COLD AND GLOOM IS IN THE AIR
Interesting that along with these new findings, it appears that weather has a say in when we might choose to spend a few hours remembering happy times. On a cold day it’s not just the cozy fire that brings out the warm fuzzies, this new research tells us that comforting thoughts from the past warms the body, suggesting a possible reason why nostalgia has evolved.
Tim Wildschut of the University of Southampton in England said, “If you can recruit a memory to maintain physiological comfort, at least subjectively, that could be an amazing and complex adaption.” Wildschut and his team have found that nostalgic remembrances and thoughts are amazingly similar across cultures. So when a pleasant memory where the “day dreamer” recalls being surrounded by close friends such as weddings, holidays and other happy and special moments he or she is filled with a special kind of comfort.
TIMES OF TRANSITION
During periods of transition as when children leave home, a spouse or other close family member dies, some bittersweet reminiscences are often triggered by moments of feeling isolated. In spite of facing a sense of loss, which we would deem as normal, nostalgia often makes us feel better. “It brings to mind cherished experiences,” says North Dakota State University psychologist Clay Routledge, “that assures us we are valued people who have meaningful lives.”
So when times of feeling blue appear with the day outside gloomy and feelings of despair seem to be the order of the day, then it’s time to bring out the popcorn, old family movies, and photo albums, and be joyful in the nostalgia.
February 14 2014 – I suppose I thought about sensitivity before Alzheimer’s after receiving one of those forwards we often get in our email, although it may have been on Facebook. Either way, it was a message aimed at mostly wives because it was a wife who reminded her husband of the other woman in his life.
“This other woman,” the wife outlined for her loving and devoted husband, “loves you very much and would be so pleased if you would invite her for dinner every so often. Of course, the thoughtful wife, showing sensitivity was making reference to her mother-in-law. Continue reading
TESTING FOR ALZHEIMER’S
February 7, 2014 – Several years ago when Ken’s diagnosis was very new, I had an opportunity for him to be interviewed for possible clinical trials. For several reasons he did not qualify, which included him having Crohn’s disease and the loss of three feet of intestine. By-mouth medication could not be used because that would require the healthy functioning of his digestive tract which he no longer had, but the tests that the doctors imposed on him enlightened me about the failure his mind and the puzzles he was facing.
Evaluating his AD history we were, at first, encouraged that he might be accepted which would require us to spend a night or two at the hospital. I could sense how reluctant he actually was. “I don’t want to be here alone,” Ken stammered to me sounding every bit like a fearful little boy. I assured him that if he stayed I would be there with him.
TESTING IS HARD WORK WITH A POOR MEMORY
I was also aware of his feelings of intimidation as the doctors ran him through simple tests using several step-by-step verbal instructions in the way he was to fold a sheet of paper which included picking the paper up from the floor and then following the previously given instructions. As simple as the assignment was, I could see that it was a major puzzle to him. When he began folding the paper I noticed that he had forgotten several of the earlier steps to finishing.
MEMORY AND COORDINATION
Final diagnosis of AD or other dementia is based on many levels which includes simple testing, and can be further evaluated with brain scans an MRI or a cat scan. One pencil-paper test was to have him draw a clock placing the hour hand at 11:00 and the minute hand to read 10 minutes to 11. For him, that was just too much information to remember as well as his hand coordination to draw the numbers and the clock with its hands.
TOOLS FROM THE INTERNET
Perhaps many of you have had a puzzle sent to you via email or have had them posted on Facebook. Whatever your experience and my thoughts on brain testing, take some time and check out what you can do, see, or not. Another source, of course, is in your daily newspaper or magazines: Crossword puzzles keep you thinking. Get those neurons going. On line there are also other brain tests you can participate in. For one, check out LUMOSITY. You can use it free for about a month. From then on it will cost, but it is a wonderful mind-brain exercise and you get to check out how you compare with others in your age group. Just like the body, early patients and caregivers alike need mind-brain workouts and puzzles to keep the brain/mind strong and exercised.
The following is a good example of a Brain Study: If you can read it OUT LOUD you have a strong mind. Just try it because it is good exercise and fun.Thanks to the brainy person who put this together and because there was no name attached I will credit it to that clever person Anonymous.
To all of those strange-minded friends who are tuned in:
If you can read the following paragraphs copy and test your friends.
Only very good and strong minds can read this. This is weird, but interesting.
53RV35 7O PR0V3
H0W 0UR M1ND5 C4N
D0 4M4Z1NG 7H1NG5!
1N 7H3 B3G1NN1NG
17 WA5 H4RD BU7
N0W, 0N 7H15 LIN3
Y0UR M1ND 1S
W17H 0U7 3V3N
7H1NK1NG 4B0U7 17,
B3 PROUD! 0NLY
C3R741N P30PL3 C4N
SO CPOY AND TSET YOUR FIRENDS
If you can read this, you have a good and strong mind, too. Only 55 people out of 100 can.
I cdnuolt blveiee that I cluod aulaclty uesdnatnrd
what I was rdanieg.
The phaonmneal pweor of the hmuan mnid,
aoccdrnig to a rscheearch at Cmabrigde Uinervtisy,
It dseno’t mtaetr in what oerdr the ltteres in a word appear,
the olny iproamtnt tihng is that the frsit and
last ltteer be in the rghit pclae.
The rset can be a taotl mses and you can
still raed it whotuit a pboerlm.
This is bcuseae the huamn mnid
deos not raed ervey lteter by istlef,
but the word as a wlohe. Azanmig huh?
Yaeh and I awlyas tghuhot slpeling was ipmorantt!
If you can raed this, then copy and test your friends.
Even if you are still a kid or teen, you will find this interesting …
This is a TEST —————- Good Luck!!!
No grades, no awards, you’ll know how you do, and we can all use some brain exercise!!
And then how old are your eyes?
The Eye Test
Can you find the B’s
(there are 2 B’s) DON’T skip. This is a challenge.
Once you’ve found the B’s
Find the 1
Once you found the 1….
Find the 6
Once you’ve found the 6…
Now find the N (it’s hard!!)
Once you’ve found the N…
Find the Q..
So, go walk your mile or two and you’ll be set for the day.
LIFE IS JUST DIFFERENT IN THE ALZHEIMER’S WORLD
It’s different now. Holidays are different. Life is different. Our world is different. We now live in the World of Alzheimer’s, a place we would have never chosen. But then, we don’t always get to choose the road where life takes us. However, we do adjust. That’s what one of Ken’s caregivers Crizaldo said, when we talked about world conditions and the never-ending problems constantly on the horizon. “No matter where we are or what happens,” he said, “it’s how we adjust that’s important.”
LEARN AS WE GO
Living in the Alzheimer’s world is always a learning situation. We learn early on that our loved one is constantly changing often taking on different personalities, some we don’t much like, but that’s not the point. The loved one is still our loved one and the disease is taking them into a place they don’t much like either. Our friend Ila of long ago must have known somehow that she was falling into a deteriorating condition. There were times when she would ask her husband or friends, “What’s happening to me?” My own mother would say, “Something’s wrong with me.” Gripping onto who they had been, both women were puzzled as they recognized changes which must have been a very frightening experience for them. As friends, family and cargivers we need to know how to ease their worries and set their minds to rest. When memory is illusive it’s all right to change the subject. If they have been diagnosed then we can just blame it onto the disease. If not the patient can feel at ease knowing they are scheduled to see their doctor.
ACTIVITIES FOR THE PATIENT
Check your community. My friend Darline goes to adult daycare three times during the week. This is not only good for the AD patient, it’s good for her daughter caregiver to have a break. Activities at daycare may resemble nursery school, but that’s all right. Whatever keeps the Alzheimer’s patient occupied is a gift and just what they need.
KEEP IT SIMPLE
At home activities can be something the patient has been doing all their life. I gave my mom, who had been an expert seamstress and needle woman, a small square of quilting so she could stitch the layers together. Unfortunately, she had lost her sewing skills and complained about the needle and the thread, and then handed the project back to me. Perhaps I had overestimated her capabilities and it was too complex at that point in her disease so I gave her a box of trim to untangle. This she did with great relish. It was a challenge which she understood and did by gently undoing knots and tangles, and then she rolled each piece into a ball. When one thing doesn’t work, then try something else.
Yes, life with Alzheimer’s is different, but it’s when we finally accept where we are and where our loved one is, that together we can move on. I try to think of this experience as my Alzheimer’s husband’s caregiver as just another chapter in our book of life. Remember they can’t help what has happened to them so it’s our responsibility to help them through their confusing Alzheimer’s world.
Alzheimer’s World photo courtesy of Creative Commons.