GIFTS FOR MOMS AND STAY-AT-HOME CAREGIVERS

warpped present

Thoughtfulness is appreciated whether one is a mother or caregiver.

 May 16 2014 — I recently read a blog by Megan Tietz directed at making  “Stay-at-home moms” happier. As I noted all of the nice things friends and family can do for these hard-working and dedicated women I couldn’t help but think about a whole bevy of women who are “Stay-at-home caregivers.”

 LOTS IN COMMON

Their jobs are similar, but more than likely the two are separated by decades.  The moms, of course, are caring for little people who can’t care for themselves.  A.D. Caregivers, who were likely stay-at-home moms spending earlier years caring for a young family are now caring for older loved ones who can’t care for themselves either.

 ALL ALONE AND SOMETIMES LONELY

 Furthermore, both jobs require a certain amount of confinement in the home (also known as cabin fever) which makes their job a bit isolated and often lonely. It’s been said from moms of small ones that their days of excitement are often topped off with a lunch of peanut butter/jelly sandwishes and the stimulating conversation of a three-year old.

 While rearing the next generation, though, moms can thrill as the children learn, grow and develop. In contrast the Alzheimer’s caregivers have no delightful or encourageing rewards. In caring for the elderly who are losing memory the experience is laced with sadness and often sorrow as the loved one slowly fades into the ghostly and lost world of Alzheimer’s.  As with rearing children, caregiving is a labor of love:  An unselfish choice made with love and devotion. Continue reading

Originally posted 2014-05-17 04:06:16.

Moms, Magic And A Mother’s Day Story

womens stove pipe hat

Mom’s have magic, even if it’s not Mother’s Day.

May 9, 2013 – With Mother’s Day just around the corner, if you think about it, your mother was the first magician in your life. When you were tiny and your world and her’s were perfect.  We didn’t know anyone who had Alzheimer’s disease. Mother appeared from out of nowhere, just like magic to answer your pleadings for food, a diaper change and to give you love, a pat on the back and a few hugs mixed with plenty of TLC. Continue reading

Originally posted 2014-05-10 14:37:40.

THE MOODY PERSONALITIES OF ALZHEIMERS

MOODY UPS AND DOWNS

Sad and happy theater masks

Many people with Alzheimer’s can be moody, adding to the difficulties of caregiving.

May 2, 2013 – Ken’s personality was never moody or mean. In fact it was the opposite: friendly and kind. Alzheimer’s, as it intrudes into the brain, does often have a negative effect on the victim’s actions.

SOME OF THE GOOD TIMES

Eating is a good example of the good things in his life. He enjoys every meal placed before him and eats with gusto. Everything is good to him, especially desert. He responds to the finale of a good meal with bright eyes and raised eyebrows right from the first bite. If the eyes could speak they would say, “Mmmmm, that’s good.”

Getting back to bed at night after a long day of routine is a good thing for my husband. His appearance shows a pleasant look on his face, which is relaxed and quiet. Within a few minutes he drifts off to sleep, and another day as his battle with Alzheimer’s is over for a few hours. Following a good night’s sleep, he’s ready for another day. Ken loves to go places, even to the doctors. although getting in and out of the car is difficult for all of us, taking a trip to see his doctor is not unpleasant. He is always cooperative with his doctor as he takes Ken’s blood pressure and checks his vitals. If Ken’s caregivers were ever as intrusive as his doctor, they would receive a push, punch or shove. Even when having his blood drawn, Ken is pleasant and cooperative.

Having his hair cut might not be something he looks forward to, but he doesn’t seem to mind. I still cut his hair rather than take him to a barber, and again he is very cooperative. Possibly, Like the doctor’s office or hospital surroundings, there must be something familiar and all right with the procedure. That’s good for David and me. It would be difficult to keep him tidy looking if he were thrashing about and fighting us, but he isn’t. He is also calm when he gets a shave.

LIFE IS NOT ALWAYS VIEWED THROUGH ROSE-COLORED GLASSES

Cleanup-time is not Ken’s favorite. As a very private person, he still likes his privacy, but David and Crizaldo make every effort to not rile him. Sometimes, though, the cleaning job must be completed. There are days during the process when he does get upset. The other day, even though Ken’s hands are restrained, he managed to bring the double fist straight up and bloody David’s nose. David, however, knows such happenings go with the job. Ken’s Alzheimer’s no longer gives him coordinated speech to be threatening as he was last year. One of the personality parts remaining with Ken is his gratitude. While not remembering giving David a bloody nose, he seems to know that when the day is over, or after a meal, he has a feeling of appreciation, and will often say, “Thank you very much.” The remark is not addressed to anyone, in particular, just an expression of gratitude. Hearing him be a little bit of the person he made me happy, if only for a little while. What can family and others expect when dealing with their moody loved one? It seems to be another quirk of the disease where the caregivers need to adjust. Choosing to never take their moody AD behavior personally is a start for caregivers to get over these difficult character changes. Remembering that being moody is not necessarily a choice for the person with Alzheimer’s. Caregivers need to learn to take unreasonable behavior in stride, and for the patient it is normal.

Originally posted 2014-05-04 00:55:25.

Does Alzheimer’s Grow On Your Family Tree?

ONE CENTURY PLUS

Dorothy Cernac sits with her cake during a celebration of her 100th birthday Sunday at the Mozart Restaurant & Lounge

COURTESY PHOTO/JOHN CERNAC Dorothy Cernac sits with her cake during a celebration of her 100th birthday Sunday at the Mozart Restaurant & Lounge. – Pueblo, CO

April 25 2014 – On Ken’s family tree, Aunt Dorothy is Ken’s aunt, his mother Rose’s younger sister. In fact, she is the baby of the family, the last of 14 children born to Pete and Mary Perse of Pueblo, Colorado. Dorothy still lives in the family home where she was born on April 6,1914. She does not have Alzheimer’s nor any cognitive loss. Her sister Rose had Alzheimer’s as did several of her brothers. Mother Mary lived into her late 80s with no signs of the dreaded disease. So it might be assumed the  disease must have had its beginning with Pete, which is still difficult to tell as he died of heart failure in his early 60s.

DISEASES ON THE FAMILY TREE

It just appears, at least to me, that some families are more subject to certain diseases that others: Diabetes seems to be prominent in some families, heart conditions in others, cancer in many and Alzheimer’s and various dementias in others.

SKIPPING GENERATIONS OR JUST HIT OR MISS

Shortly before Ken was diagnosed with AD even though there were signs of the ailment long before we went to a neurologist. I had asked our PC doctor, knowing that both of Ken’s parents had the disease, what were Ken’s chances. His answer was, “With such a vast gene pool for a fetus to pull from, there was no way of forecasting. Maybe yes, maybe no.” I suppose with Auntie Dorothy she was part of the hit or miss and the family tree from where her genetic makeup collected must have been free of the AD gene.

Dorothy was a bright young woman and made a career with Montgomery Wards as manager of the fashion department, retiring after 33 years of devoted service. Being the youngest in the family,she remained home, caring for her aging mother until her death.. She married widower John Cernac in her middle years and became step mom to his grown children, loving them as well as her newly acquired grandchildren.

A LIVING HISTORY

Dorothy has seen a hundred years of change in her lifetime recalling members of her family tree who were fighter pilots during WWII. She also commented on the natural growth of her city over the years. For her century of learning, the matriarch of the family passes along to her remaining family and friends some life advice including dealing with adversity and challenges such as Alzheimer’s — the family disease she didn’t inherit: “Be prepared to take the good with the bad.”

Originally posted 2014-04-26 17:00:27.

EASTER — BEFORE ALZHEIMER’S

 

spring garden pastel

An Easter remembrance before Alzheimer’s.

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 the older generation before us: 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 was 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 bag  which had been dropped at the edge of a puddle. Actually the flat bit of plastic could have been empty but seemed to call out, “Rescue me from the puddle.”  We stopped and Janet 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 newly 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 fresh, young love sharing the season and holiday of new life. Janet read it aloud 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/is 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.

Originally posted 2014-04-19 07:44:36.

CONTRIBUTING TO LIFE, VALUE AND ALZHEIMER’S

A CULTURAL EXPERIENCE

 

women washing clothes in a river

Does contributing to a family, with it’s feelings of self-worth, help prevent Alzheimer’s?

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.

Originally posted 2014-04-14 23:34:07.

ALZHEIMER’S, APRIL, SPRING, MUSIC AND CAREGIVING

colorful spring garden

Spring brings thoughts of colorful flowers, music and a heart full of love.

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 turtle is heard in our land.”

                                                      Songs of Solomon 2:10-12

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 another version of  Song of Solomon as if Ken had written the words.  I am without sadness, but filled with praise and blessings for I have words, music and memories of happier days and times, and I know comfort believing that there is life after life and the continuing of us.  For now, though, and in a mood of thoughtful provocation I leave these words:

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 has not passsed, 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.”

Originally posted 2014-03-31 01:45:04.

TAKE ME HOME

This gallery contains 1 photo.

Whether longing for the home we grew up in, the home we lived

purple cartoon house

A house is rarely home for most people, including those with Alzheimers.

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.”

Originally posted 2014-03-22 20:16:05.

IS ALZHEIMER’S CATCHY – OR CONTAGIOUS LIKE MEASLES?

CONTAGIOUS? NOT EVEN LIKE A BAD COLD

dinosaur with measles

Is Alzheimer’s contagious like the measles? (Creative Commons)

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.

Originally posted 2014-03-18 14:02:03.

COPING AND ALZHEIMER’S

This gallery contains 1 photo.

ILLNESS BY ASSOCIATION

illustration of person coping by hiding inside of a jar

Coping skills for caregivers can vary from the helpful to those that aren’t. Photo: Creative Commons/Михал Орела

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.

CAREGIVER COPING

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.

OR SUPERSTITION

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.

Originally posted 2014-03-08 21:59:33.

Sign-up For Our Newsletter

Sign-up for our free newsletter and receive expert tips from Ann Romick, a woman who has cared for 4 different family members with Alzheimer's over a span of 30 years. Be the first to get notification of her forthcoming book, Journey Into the Fog, based on her experiences.

We respect your email privacy

Email Marketing by AWeber