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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 and 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.
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 marching in place, 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. Accidents are not jinxed by 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.
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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.
January 24, 2014 – During our courting times those many years ago Ken and I would often dance the night away at the Claremonth Hotel high in the hills of Berkeley, California. Back then dinner dancing was the popular thing to do. Between courses we two-stepped around the ball room to the sound of Russ Morgan who played all the popular tunes – signing off with his theme song, “So Tired,” which became our song to remember.
In this charming film a very talented Josh Mullins let’s us know about Edgar and his love who invites him to join her and drive away in a ’57 Chevy, but he can’t get out of the house. Aware of his loneliness their daughter does the next best thing and waltzes with him around the kitchen. Dedicated to my husband as I remember our wedding anniversary and dancing with him on January 21. Happy Anniversary, Sweetheart.
REMEMBERING AN OLD FAVORITE TIME TRAVEL MOVIE
January 17, 2014 – If you saw the movie I doubt you’ll ever forget the intensity of their love. Christopher Reeves and Jane Seymour together in a time travel romantic story that became a cult film classic. No, neither of the characters had Alzheimer’s, but their experience is a mind-blowing concept.
There he was, handsome and suave, even without his Superman costume, but instead of being Clark Kent, Reeves’ protrayed a young man named Richard Collins who was celebrating his first writing effort at the college premier of his successful play. Moving past his friends is an old woman who says simply, “Come back to me,” and at the same time gives him an old pocket watch which she had given him during another time and at another place. Continue reading
ARE YOU A CAREGIVER?
Recently on Bob DeMarco’s Alzheimer’s Reading Room I read a post by Jeff Foxworthy about the possibility that “you might be a caregiver.” From what he tells us, he already is. Not only were his notes humorous, but many of the comments that followed were equally funny or applicable – especially those where other caregivers relate.
WHO ARE CAREGIVERS?
I think of caregivers as those persons who care for others who are infirmed in one way or another. For so many of us we care for loved ones or others who have Alzheimer’s disease. However, there are caregivers who extend themselves to all sorts of illnesses and disabilities. Yes. We are all caregivers.
The total definition includes caregiving from hundreds of miles away relaying instructions via email, phone conversations and any other way that communicates between the patient and/or other concerned individuals who actually do what needs to be done at the patient’s home or elsewhere. Caregivers can also be those who have placed their loved one in a care facility and makes sure the bills are paid. Hoever, the caregiving that I am most familiar with is “HANDS-ON CAREGIVING.” Apparently, Foxworthy falls into that catagory with his opening statement:
“Did you ever try to hold a door open with your butt, and then push a wheelchair through it? You might be a caregiver.” Now for me, that defines a “hands-on caregiver.” From that point on the comments from readers which followed totally defined those hard-working-hands-on caregivers who are often on duty 24/7. Their comments I’ll paraphrase and include some of my own and from friends who have been caregivers.
LAUGHS FOR LATER
Sheila cleaned the bathroom floor eliminating the slip and slide after her loved one experienced an explosive diarrhea episode. Sound familiar to anyone?
My mother-in-law hid valuables. Before she and my father-in-law agreed to direct deposit, she would hide their SS checks. When I arrived to take the two of them to the bank we had to find the checks. “What are we looking for?” Rose constantly asked as we rummaged through drawers, closets and cabinets. Repeating over and over what we were hunting for and why, I finally found the checks hidden between the folds of the sheets in the linen closet. The helpful thing about that hiding place was I always looked there first. They do the hiding and the caregiver seeks.If you have played hide and seek, you might be a caregiver.
Cleaning out their desk which was stuffed with odds and ends of mostly worthless papers I found a refund check from their insurance company which had never been cashed and squirreled away for safety. Fortunately, the company was happy to send a replacement which went straight to the bank.
Amber told of her loved one holding the remote next to his ear calling out, “Hello, hello.” For me my Ken put our remote in our office claiming it was one of his engineering tools.
If you know the best deals when buying adult diapers, or if you’ve pounded your pillow with your fist and cried in the shower,you might be a caregiver.
If you find youself doing chores: mopping, dusting, cleaning while the loved one catnaps, you must be a caregiver. If there are times you think you’re living in the Twilight Zone, and you yearn for a small, smidgen of privacy it’s normal. Heather closed her comment with “If you are a multi-tasking bad-ass, you might be a caregiver. Hang in there caregivers.”
If you hand the phone to your loved one when you know it’s a telemarketer, you are a caregiver with a sense of humor, and it’s humor that gets us through sad and often miserable times. Without humor life becomes much too serious and often unbearable.
AD victim Nick was convinced that the Ace in a deck of cards was worth $15.00. With his found Ace he paid for his haircut and told his bewildered barber to keep the change.
IT’S THE DISEASE
Believing that I was an intruder in his home, my Alzheimer’s-stricken husband insisted that I leave. “But I live here,” I tried to convince him. “Then show me your rental agreement.” he demanded.
My mother verbally tossed my father out of their room when she said, “Get out of here sir, I am not that kind of girl!” He left and slept in another room, but was so hurt by the rejection that he told me he would never go back. He didn’t. Azheimer’s does that between loved ones even though we, with our clear- thinking and understanding minds know that the illness is speaking not a loving wife of 70 years.
A person signed into Foxworthy’s short blog as Scribe and summed it up with a lovely and poignant thought “But in that little shadow of the absurd is lurking a grimace, and we know that our loved one would walk through fire rather than deliberately put us through these tough times. Yes! Remember that over and over. They can’t help it, but we can help them.”
If you can relate, especially as a “Hands-on caregiver,” then we, your fellow HO caregivers cheer and salute you.
January 3, 2014 — I am being obedient by taking a walk as suggested by my doctor following my October stroke episode. “ People who exercise, take their meds and follow doctor’s orders just do better than those who don’t,” Dr. Chang emphasized in answer to my question regarding what I could do to avoid another possible stroke – even a mild one. As my husband’s caregiver in our combined battle against Alzheimer’s I know how important it is for me to stay healthy.So I began with walking at least once around the block.“Double that,” suggested my occupational therapist. So I did. It’s probably totals a quarter mile, and I plan to increase the distance, but more than likely I’ll switch my timing to daylight. Continue reading
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RESOLUTIONS OR GOALS?
December 28, 2014 – It is a custom just about everywhere in the modern world for folks to look back over the past year, find out what didn’t happen which they were certain would happen because they had made resolutions; especially personal promises: “I will lose a few pounds,” ‘I will exercise more,” “I will finish my project,” and so on and on. So each new year, we do make promises to ourselves to do better than we did previously.
JUST CHANGE THE WORD
So what does an Alzheimer’s caregiver do in making New Year’s resolutions? For me I’m going to change the word to goals: set new goals, especially after a decade when my loved one appears to have sunk into oblivion, so then what? Gone, but not gone. Discouraging Continue reading