CareGiver: The Book

Communication in an Alzheimer's World

2009-12-07T22:49:00.000-05:00

Let's face it, dealing with Alzheimer's is not easy. Understanding Alzheimer's disease is not easy. Some people can't do it...ever...

Bob DeMarco
Alzheimer's Reading Room
Editor

It takes a lot of energy, learning, and patience to deal with the Alzheimer's disease.

In order to begin the process of dealing with communication in a world fill with Alzheimer's you first need to make a simple important decision -- you want to decrease both your stress as caregiver, and the stress of the person suffering from Alzheimer's.

Read that carefully, you want to reduce stress. You want to change the dynamic. You want to change for the better -- you want and need to change the way things are.

You might be wondering why I just repeated myself. Why? Because I believe it is necessary to get focused on what you want to accomplish, if you ever expect to accomplish it. It must become a deep and strong desire within you.

A goal.

To continue reading go here.

Also see:

The Metamorphosis of This Alzheimer's Caregiver -- I Wish

The Metamorphosis of This Alzheimer's Caregiver (Part One)

The Metamorphosis of This Alzheimer's Caregiver (Part Two)

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The first signs of Dementia (Alzheimer's)

2007-07-23T20:35:00.000-04:00

Looking back, there is little doubt in my mind that if I had had the proper education or information I would have realized my mother was suffering from dementia sooner. Most people like me tend to ignore the symptoms at first believing they are simply signs of "old age". Anyone who ends up in my shoes knows and understands that a person in the early stages of dementia or Alzheimer’s can function with some normality--even drive a car. It is not until they deteriorate or until some "event" takes place that we wake up to reality.

The article on the next page is one of the best I have read. The basic underlying premise is that behavior changes slowly in the elderly and if they begin to suffer cognitive impairment it will be evidenced in behavioral changes. Sometimes these changes can be quite subtle but if detected could raise a “red flag”.

If my mother had been enrolled in any of these studies I feel certain she would have been diagnosed with dementia sooner. This would have allowed me to get her in an exercise program, get her proper nutrition, and insure that she was taking her medicines as prescribed. I leaned in the last three years how important these three factors are in the quality of her life.

My mother turned 91 years old in June and she suffers from Alzheimer’s disease. I am her CarGiver.

Sensors could help catch first signs of dementia
Monitors and online tests track subtle changes in daily mobility, behavior

Source Associated Press and MSNBC

WASHINGTON - Tiny motion sensors are attached to the walls, doorways and even the refrigerator of Elaine Bloomquist’s home, tracking the seemingly healthy 86-year-old’s daily activity.

It’s like spying in the name of science — with her permission — to see if round-the-clock tracking of elderly people’s movements can provide early clues of impending Alzheimer’s disease.

“Now it takes years to determine if someone’s developing dementia,” laments Dr. Jeffrey Kaye of Oregon Health & Science University, which is placing the monitors in 300 homes of Portland-area octogenarians as part of a $7 million federally funded project.

The goal: Shave off that time by spotting subtle changes in mobility and behavior that Alzheimer’s specialists are convinced precede the disease’s telltale memory loss.

Simple early signs

Early predictors may be as simple as variations in speed while people walk their hallways, or getting slower at dressing or typing. Also under study are in-home interactive “kiosks” that administer monthly memory and cognition tests, computer keyboards bugged to track typing speed, and pill boxes that record when seniors forget to take their medicines.

More than 5 million Americans, and 26 million people worldwide, have Alzheimer’s, and cases are projected to skyrocket as the population ages. Today’s medications only temporarily alleviate symptoms. Researchers are desperately hunting new ones that might at least slow the relentless brain decay if taken very early in the disease, before serious memory problems become obvious.

So dozens of early diagnosis methods also are under study, from tests of blood and spinal fluid to MRI scans of people’s brains. Even if some pan out, they’re expensive tests that would require lots of doctor intervention, when getting someone to visit a physician for suspicion of dementia is a huge hurdle. And during routine checkups, even doctors easily can miss the signs.

Bloomquist, of Milwaukie, Ore., knows the conundrum all too well. She volunteered for Kaye’s research because her husband died of Alzheimer’s, as did his parents and her own mother.

“It’s hard to know when people begin Alzheimer’s,” she reflects. “Alzheimer people do very well socially for short periods of time. If it’s just a casual conversation, they rise to the occasion.”

‘Typical’ days monitored

Measuring how people fare at home — on bad days as well as good ones, not just when they’re doing their best for the doctor — may spot changes that signal someone’s at high risk long before they’re actually demented, Kaye told the Alzheimer’s Association’s international dementia-prevention meeting last week.

“If you only assess them every once-in-a-blue-moon, you really are at a loss to know what they are like on a typical day,” Kaye explains.

High-tech monitors under study:

Researchers at New York’s Mount Sinai School of Medicine are heading a study that ultimately plans to recruit 600 people over age 75 to help test in-home “kiosks” that turn on automatically to administer monthly cognitive exams. A video of a smiling scientist appears on-screen to talk participants through such classic tests as reading a string of words and then, minutes later, repeating how many they recall, or seeing how quickly they complete connect-the-dot patterns.
An Oregon pilot study of the motion sensors tracked 14 participants in their upper 80s for almost a year. Half had “mild cognitive impairment,” an Alzheimer’s precursor, and half were healthy. Impaired participants showed much greater variation in such day-to-day activities as walking speed, especially in the afternoons.

Why? The theory is that as Alzheimer’s begins destroying brain cells, signals to nerves may become inconsistent — like static on a radio — well before memories become irretrievable. One day, signals to walk fire fine. The next, those signals are fuzzy and people hesitate, creating wildly varying activity patterns.

Study receives unique grant

The pilot study prompted a first-of-its-kind grant from the National Institutes of Health to extend the monitoring study to 300 homes; 112 are being monitored already, mostly in retirement communities like Bloomquist’s. They’re given weekly health questionnaires to make sure an injury or other illness that affects activity doesn’t skew the results.

In addition, participants receive computer training so they can play brain-targeted computer games and take online memory and cognition tests. The keyboards are rigged to let researchers track changes in typing speed and Internet use that could indicate confusion.

Finally, a souped-up pill dispenser called the MedTracker is added to some of the studies, wirelessly recording when drugs are forgotten or taken late.
Electronics giants already sell various medical warning technologies for the elderly, including dementia patients, such as pill boxes that sound reminder alarms at dose time. And the Alzheimer’s Association and Intel Corp. are jointly funding research into how to use television, cell phones and other everyday technology to do such things as guide dementia patients through daily activities.

The next step of companies selling early symptom monitoring isn’t far off, and unbiased data on what really helps will be crucial, Kaye warns.

Alzheimer's, Validation Therapy and the CareGiver

2007-07-04T14:13:00.000-04:00

I ran across this article while "fishing" on the Internet. This tried-and-true technique can be used when you are at "wits" end when dealing with difficult behavior. The article contains examples that should help you develop your own frame of reference, techniques when dealing with difficutl situations on a daily basis. It should be particularly useful in helping you understand that the often bizarre behaviors evidenced by your Alzheimer's loved one are not uncommon and can be dealt with effectively. This article is worthwhile reading and is worth "salting away" for future reference.

Nursing Homes, June, 2000 by Mark Warner

DESIGNS for Validation Therapy

Mark Warner

This tried-and-true technique can be supported in the Alzheimer's environment

As each member of the group sat in the circle hoping the balloon would gently drift their way, Roxanne burst from her chair in a fit of rage, shouting "There'll be no ball-playing in my house!" Furious at the insolence of the players who ignored her commands, Roxanne forcefully attacked a staff member, who tried to comfort her by explaining that she was not in her house, but merely with her friends playing a game. Roxanne didn't buy that and swung wildly, hitting the staff member squarely in the chest.

Fearing that I, too, might fall victim to the same fate, I cautiously approached Roxanne.

I put my arm around her shoulder and supported her in her cause that there should be no ball-playing in her house. "This is terrible," I said. "You're right, they should not be throwing that ball in your house, should they?"

"No, they shouldn't," bellowed Roxanne, showing only the slightest relief that someone saw her point of view.

"But you know, Roxanne, the only way they will stop throwing that ball is if we write down the rules for them. I think it's the only way they'll listen." Roxanne was buying this approach, so I suggested, "Let's go into that room over there and write down all the rules for them, okay?" Much to my relief, Roxanne agreed, and hand-in-hand we went into the room to write down the "rules."

"Okay," I began, "Rule Number One is 'No ball-playing in the house,' right?"

"That's right," agreed Roxanne.

"So what will Rule Number Two be," I asked, and then offered, "How about, 'No running in the house'?"

"That's right," said Roxanne, "my grandchildren are not allowed to run in my house."

"Roxanne, you've got grandchildren," I said, raising the tone of my voice with delight.

"Oh, yes, my little gran'boy is six years old, and he is as smart as they come." Roxanne was on a roll now, and the upset caused earlier by the balloon toss in the next room might as well have been miles away. Fifteen minutes later, when the game was over, Roxanne and I emerged from the room, both of us just as happy as we could be, the "rules" left on the table and the incident long forgotten.

The technique used here is called Validation Therapy. It assumes that no matter what illusion the person with Alzheimer's disease (AD) is living, she is right, and nothing you can say or do will convince her otherwise. Naomi Feil is the acknowledged expert on validation therapy and wrote the book The Validation Breakthrough. The basic concept is that you have to buy into the resident's illusion and convincingly play along with it, there by validating it. Eventually you'll see opportunities to mold the tale--and the resident's behavior--into something that is acceptable and no longer upsetting.

"What has this got to do with design," you ask? Everything, in fact. Understanding Alzheimer's disease and the many creative ways to deal with it are as much a challenge of designing an environment as of caregiving within it.

Angie is always complaining about the stranger in the bathroom. She won't use the toilet while "the other lady" is in there. She says that the bathroom is occupied, not realizing it is her own reflection that she sees. Do you explain that she is seeing herself in a mirror?

No. You go along with her. How about, "I'm sorry, Angie, let me see what's taking that lady so long." You go into the bathroom and somehow cover the mirror. One family confronted by this situation told their mother that the mirror was dirty and needed to be cleaned. They sprayed it with a powdered deodorant, creating a haze that obscured any reflection. "Mom, she's out of there now," her daughter said. "I wonder what took her so long. Let me know if you need anything. I'll be right here waiting for you."

Caregiver 1: "Deborah won't eat anything. She just sits at the table and stares at the food. She loves gardening, though; we spend hours every day weeding and pruning the vegetables in our garden."

A golden opportunity awaits us here. Figure it out. Deborah loves gardening, but won't eat.

"So we tried something a little different. Though the tomatoes were days from ripening, I went to the grocery store and picked out some beautiful red ones. Instead of putting them on the table in front of her, I pretended to come in from the garden, tomatoes in hand. As Deborah Looked at the tomatoes, I told her, 'They came from our garden and don't they Look delicious?"'

Granted, such ploys are not always so successful, but many are. Sharing the bounty of the garden, enjoying the fruits of your labor that you grew together, can somehow trigger pleasant, guiding thoughts and behaviors when all else fails. Perhaps it stirs up memories from long ago, or maybe it's just the thrill of eating your own garden vegetables. Regardless, it adds a new dimension to life that might very well conquer the ravages of the disease and perhaps bring new purpose to those waist-high gardens many facilities are installing these days.

Taking validation to the next step often involves anticipating the problem and creating the illusion. Validation, also referred to as deceptive therapy, white lies and fiblets, means creating a story--in the best interest of the person who is "confused."

"Dad, who's president? Do you remember his name?"

"Of course l do, it's Roosevelt!"

If your family member believes it is the 1930s, so be it. As he regresses in time, so do his memories of values, experiences and people. What was important then becomes important now!

Given residents' belief that they are living when Roosevelt was president, what would the world have been like back then? What would the good experiences and environmental features have been? How can we recreate the familiar feelings of that period in a convincing and subtle way?

For example, those were the days when they hung the clothes on a line in the back yard. Isn't that the kind of good and secure feeling we would want to recreate--possibly by merely providing a clothesline? Others might be enjoying the time when they were raising their families. What better way to indulge them than by allowing them to once again care for their spouse or children by hanging "their" clothes out to dry?

Or, perhaps they have less comforting memories.

Caregiver 2: "Mom collects everything--rubber bands, paper clips paper...everything! And she stores them everywhere. You can hardly walk in her room, there is so much stuff in there!"

Perhaps Mom is reliving times when the country was at war, when every little scrap was valuable in the war effort, or the Great Depression, when times were so tough that you had to keep everything, when nothing that might be useful was thrown out. Environmental validation then might mean providing easy-to-see drawers, trunks or cabinets to store these important items.

How were evenings spent in the good ol' days (before TV, let's say)? Many families spent hours sitting on the porch, watching people go by, talking to neighbors, etc. Why not create a porch, complete with rockers and swing gliders? Locate it carefully and safely, but within view of interesting activities (maybe a playground where children play). Make sure it is secure for those who might try to leave or climb over the railing; it should also be far enough from strangers outside who might be perceived as intruding into their space. Perhaps a screened porch would do the trick.

One should also beware of environmental miscues.

"Bruce, why aren't you eating?"

"I didn't bring my wallet and can't pay for the meal."

Although Bruce is living in an assisted living facility and doesn't have to pay for his meal, he doesn't realize that. As far as he is concerned, this large, beautiful dining room is a restaurant, and the more he eats, the bigger the bill. Perhaps if we had divided the room into smaller, more homelike dining rooms and spared the expense of the huge chandelier, Bruce would feel more comfortable with his home-cooked meal.

Don't forget that little environmental touches can mean a lot.

Caregiver 3: "My mother refused to take a bath. For years, soaking in a warm tub of water had been the highlight of her day. But now, for some reason, she feared the tub and everything it represented. Eventually she confided in me, relating a childhood story about a little girl who got sucked down the bathtub drain. She recalled that tale and, like that little girl, she was afraid that she too might fall victim to that terrible fate. The solution: We put a mat over the drain. Her fear suddenly disappeared."

In a daycare center, angry and impatient residents wait for their rides to take them home. Each time the door opens, one, two or even three of them race to it and powerfully attempt to get into the van, which has actually arrived to transport someone else. Staff members intervene, often unsuccessfully, overcome by the strength and determination of people with a very important cause (the van is there for them). If we, as facility planners and designers, can anticipate this kind of behavior, we can plan door placement to eliminate visibility of the van outside, thus avoiding this upsetting and potentially volatile situation. There are design solutions for problems like these, if problems are simply acknowledged and thought about ahead of time.

Although the stories I've recounted are all too familiar to healthcare professionals, they are often "Greek" to design professionals. Nevertheless, it is a design credo: To design for any client, you have to understand the client. Why should those who have Alzheimer's disease be treated any differently?

We are only in the earliest days of learning how to design for dementia. Hopefully, there will soon be a cure for these devastating diseases, making an article such as this a moot exercise. But until then, we must continue to delve into our creative minds, take chances and discover what works and what doesn't for this population. Nursing home/assisted living managers should help designers understand how people with dementia perceive and interpret their worlds. Only when equipped with this knowledge can we designers begin to address these problems with the tools that we have available to us.

Mark Warner, AIA, is the author of The Complete Guide to Alzheimer's Proofing Your Home, the first book in the Homes That Care series on age related conditions and creating homes for those suffering from them. His firm, Ageless Design, Inc., offers consultation and assistance in the design of environments for seniors. For more information, call (561) 745-0210, visit the Web site at www.agelessdesign.com or e-mail ewarner@agelessdesign.com.

The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent

alzheimer's, assisted living, behavior, caregiver, loved one, nursing home, validation, Validation Therapy

Clinical Trial: Omega 3 Fatty Acid, Slowing the Progression of Alzheimer's Disease

2007-06-26T13:15:00.000-04:00

Preliminary studies have shown a reduced risk of Alzheimer's disease (AD) in people consuming increased amounts of fish in their diets. Many of the health benefits of fish are attributed to the abundance of omega 3 fatty acids. Docosahexaenoic Acid (DHA) is the most abundant omega 3 fatty acid in the brain. Data from several animal models supports the hypothesis that DHA may be an effective treatment for AD by means of anti-amyloid, antioxidant, and neuroprotectant mechanisms.

This study is currently recruiting patients.

Personal Note: I have been feeding my mother fish and giving her Omega 3 Oil daily for a couple of years. I believe it is beneficial.

For a complete description of the trial including eligibility requirements go to the Clinical Trials Page

Official Title: A Randomized Double-Blind Placebo-Controlled Trial Of The Effects Of Docosahexaenoic Acid (DHA) In Slowing The Progression Of Alzheimer’s Disease

Study Type: Interventional

Study Design: Treatment, Randomized, Double-Blind, Placebo Control, Parallel Assignment, Efficacy Study

Further study details as provided by National Institute on Aging (NIA)

Primary Outcome Measures:
Changes in rate of cognitive and functional decline measured by ADAS-Cog and CDR-SOB

Preliminary studies have shown a reduced risk of Alzheimer's disease (AD) in people consuming increased amounts of fish in their diets. Many of the health benefits of fish are attributed to the abundance of omega 3 fatty acids. Docosahexaenoic Acid (DHA) is the most abundant omega 3 fatty acid in the brain. Data from several animal models supports the hypothesis that DHA may be an effective treatment for AD by means of anti-amyloid, antioxidant, and neuroprotectant mechanisms.

In this study, 400 individuals with mild to moderate AD will participate at approximately 53 study sites throughout the US for 18 months. Participants will be randomized so that 60% will receive approximately 2 grams of DHA, divided into 4 capsules, 2 capsules taken twice a day, while 40% receive an identical placebo.

Potential participants will go to their study site for a screening visit, where eligibility is determined, and if accepted, for a baseline visit where cognitive status, behavioral status, functional status, and global severity of dementia will be assessed. Vital signs and biomarker labs will also be obtained. Subsequent visits will occur every three months for medication checks and, every 6 months, further assessments, physical exams, and labs.

Some participants will also take part in MRI (magnetic resonance imaging) and/or CSF (cerebrospinal fluid) sub-studies. For the MRI sub-study, scans will be done prior to beginning the study medication, and again after 18 months. Likewise, for the CSF sub-study, a lumbar puncture will be done prior to beginning the study medication, and again after 18 months.

Enrollment is restricted to individuals who consume no more than 200 mg of DHA per day, which is almost 300% of the average daily intake in an American diet. Individuals who take fish oil or omega 3 fatty acid supplements are also not eligible. Each visit will include completion of a very brief food frequency questionnaire to monitor dietary DHA levels.

The National Public Health Road Map to Maintaining Cognitive Health (Road Map)

2007-06-16T00:02:00.000-04:00

Download the The Healthy Brain Initiative

A National Public Health Road Map to Maintaining Cognitive Health.

The Healthy Brain Initiative

The Healthy Brain Initiative

The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life

2007-05-09T18:50:00.000-04:00

This best-selling book is the "bible" for families caring for people with Alzheimer disease...

Read the full text review at The Alzheimer's Reading Room

What Happened to the Italian Bread?

2007-03-11T21:26:00.000-04:00

My mother can no longer cook an egg, but one thing she can still do is cook delicious spaghetti sauce. Go figure huh?

So today was the day to go to Mario’s in Delray Beach and pick up all the material for spaghetti sauce and meatballs. I may as well digress right here and mention the key to really delicious meatballs is a combination of hamburger, veal and pork all in the just right amounts. The good news, you can buy it already mixed at Mario’s.

They make fresh baked bread at Mario’s, so I went over to the bakery section to get an Italian Bread. The women told me they would be out in about five minutes. This caused an immediate Pavlovian response in my mouth. We waited and ended up with a nice hot, fresh, Italian bread in a paper bag. Yummy.

When we arrived home I divided up the giant Italian bread into three parts. One part was for tonight when we eat the ravioli with the sauce and meatballs.

As I was cooking the ravioli I looked for the Italian bread so that I could warm it up. I looked here and looked there and I finally even looked in the refrigerator. No Italian bread. Hmm. At this point my brain goes “boing” and I wonder to myself, did mom eat the Italian bread? So, I look in the garbage can and sure enough there is the empty wrapper I had placed it in.

Yes, she ate the whole thing. Fortunately, we also purchased a nice new rye bread and in this instance I can assure you something is better than nothing.

The CareGiver Blog

Robert T DeMarco

The Alzheimer's Reading Room

AllAmerican Senior Care Weblog

Health and wellness Weblog

Exercise slows decline in Alzheimer's patients

2007-03-08T11:11:00.001-05:00

I can attest, exercise makes a difference. My mother now has the tendency to sit around all day. On those days when I can get her to go to Gold's Gym with me she is a completely different person. The look on her face, from dull to smiling, is more than enough to tell me that exercise works to her benefit.

The article on the next page talks about the effects of exercising on Alzheimer's patients.

"Nursing home residents with Alzheimer's disease who participate in a moderate exercise program have a significantly slower deterioration than those who receive routine medical care, researchers have shown."

Exercise slows decline in Alzheimer's patients

NEW YORK (Reuters Health) - Nursing home residents with Alzheimer's disease who participate in a moderate exercise program have a significantly slower deterioration than those who receive routine medical care, researchers have shown.

Dr. Yves Rolland, of Hospital La Grave-Casselardit in Toulouse, France, and colleagues examined the effects of a program of exercise for one hour twice weekly on activities of daily living, physical performance, nutritional status, behavioral disturbance and depression among 134 Alzheimer's disease patients in nursing homes.

The patients were 83 years old on average. They were assigned to the exercise program, which focused on walking, strength, balance and flexibility training, or to routine medical care for 12 months.

As reported in the Journal of the American Geriatrics Society, 110 participants completed the study. Among the 56 subjects in the exercise group who completed the study, the rate of adherence to the program was about 33 percent on average.

At the end of the 12 months, the average activities-of-daily-living score was significantly more improved in the exercise group than in the routine medical care group, Rolland's team reports.

In addition, average walking speed improved significantly more in the exercise group than in the routine medical care group at 6 months and 12 months.

However, the exercise program had no apparent effect on behavioral disturbance, depression or nutritional assessment scores.

ORIGINAL SOURCE: Journal of the American Geriatrics Society, February 2007.

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Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

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Alzheimer's--Feeling Abandoned?

2007-02-25T16:05:00.000-05:00

You should consider asking your parent(s)if they are lonely. See how lonely seniors answered on the next page.

FEELING ABANDONED?

New research suggests lonely people are at greater risk of developing dementia. Seniors who scored high on the loneliness quiz agreed with three or more of the following scenarios:

• I experience a general sense of emptiness.

• I miss having people around.

• I feel like I don't have enough friends.

• I often feel abandoned.

• I miss having really good friends.

Source: Robert Wilson at the Rush University Medical Center in Chicago

My Mother

2007-02-09T00:03:00.000-05:00

This is a picture of my mother Dorothy who is 90 years young, Kristen my mother's granddaughter, and Ryan her greatgrandson.

This picture was taken in Boca Raton, Florida, May, 2006.

I just wanted to scream, STOP! Part One

2007-01-02T23:30:00.000-05:00

I can still remember the day. An experience that told me: you are not alone; it’s all about the disease. An experience that let me know I could learn from the experience of others that came before me. That it would be possible for me to get ahead of the curve and get “mentally” prepared.

I can still remember the day. An experience that told me: you are not alone; it’s all about the disease. An experience that let me know I could learn from the experience of others that came before me. That it would be possible for me to get ahead of the curve and get “mentally” prepared.

In the beginning one of the things that drove me crazy was my mother’s constant eating. My mother would just eat and eat and eat. Even though she was overeating she would tell her friends on the telephone that she had not eaten a thing all day. And, this was at 4:30 in the afternoon. It seemed that the more she ate the more she denied eating. And it only continued to get crazier and crazier. My mother who was a good 30 pounds overweight told her friends I was trying to starve her. The friends believed her. They called me in the background to ask me why I wasn’t feeding my mother. They couldn’t accept she was suffering from Alzheimer’s disease so they believed her. When I asked them if it looked like she was being starved they just did not know how to respond. They just got confused. They knew then it wasn’t true.

It might not be easy to envision this but my mother could eat a five course meal and then turn around and eat again in 30 minutes. This happened for the first time on Easter Sunday. We went to a buffet style brunch at the Delray Country Club. My mother had everything that day ranging from a ham and cheese omelet, to a slice of prime rib, turkey, potatoes, and even a couple of desserts. When we arrived home she changed her cloths and ate a large bowl of cereal with a banana. I had been thinking to myself that I was going to be unable to eat anything for the rest of the day. Seeing her eating the cereal drove me crazy, literally up the wall. This was becoming a common experience for me. It left me angry, confused and completely out of sorts. I just wanted to scream, Stop!

I am not talking about a gigantic woman. Before the Alzheimer’s really started taking hold, I doubt her weight fluctuated more than five to seven pounds over the previous 15 years. She wore a size 6-8 all those years.

Now, it was not unusual for my mother to eat at 11:30 at night, to get up out of bed and eat at 1:30 in the morning and 4.27 AM. She would eat breakfast at 7 AM and again at 9. She would eat lunch, several snacks, and everyday at 4:30 in the afternoon shortly after I reminded her that we would be eating dinner in half an hour--a sandwich. You could set your clock to the time of day. I could go out into the kitchen and just wait for her or better yet just perk my ears up at 4:30 and listen for the refrigerator to start beeping. Later she would have dinner and begin the cycle all over again beginning around 9 o’clock at night.

This pattern of eating was driving me crazier and crazier. My tiny 5 foot tall mother had ballooned to 152 pounds. I knew this was dangerous to her health (she was developing visceral fat and this can be life threatening). She could barely walk to the mailbox and back. It was causing her to become more and more sedentary. It was a vicious cycle. I didn’t know what to do or where to turn.

Finally, I decided to get us into the gym for some exercise (my own weight had ballooned all the way up to 206). As I was thinking about how I might accomplish this mission we received a flyer in the mail from my mother’s healthcare provider (Humana). It was almost as if I was receiving an answer to a prayer: the Silver Sneakers Program. The flyer announced that on January 1, 2005 all Humana Gold Plus members would be eligible for a free membership to a gym and enrollment into a exercise program specifically designed for Senior citizens. I enrolled my mother into the Silver Sneakers Program (SSP) and bought myself a two year membership to Gold’s Gym in Delray Beach. Since the SSP was offered at Gold’s this allowed us to go to the gym and to work out at the same time. And this is where it happened.

Next time Part 2. Some startling realizations, the end of denial, the beginning of an understanding of the behavior around the disease, and my own mental construct of how to deal emotionally with the behavior.

Why Didn't I Get It?

2006-12-28T21:03:00.000-05:00

The signs were there but no one could see them--not even me.

Why Didn't I Get It?

I was talking to my sister one evening and she said to me, “You better call Mom she says she hasn’t talked to you in months.” I laughed and said I talked to her two days ago and for more than an hour. Later in the evening, I decided to call my mother. After she recognized my voice she said, “Well its about time you called.” When I said I just talked to you two days ago she just shrugged it off and we began our usual conversation.

I really don’t know why I wasn’t more concerned at the time but to be honest I wasn’t. And neither was anyone else. The typical comment, “she sounds good to me.” I guess like most people I just accepted the fact that she was getting old. Nobody saw a problem not even her friends who saw her on a daily basis.

Looking back there were plenty of signs. For one thing, she was developing a very negative attitude. But, it seemed when I spent time with her, a few days, she would turn back into her normal self and start to have a more positive outlook on things. Another sign occurred when she began to scrape her feet as she walked. I suppose I should have concluded something but I didn’t. We thought she was finally slowing down. I could go on and on.

Then Christmas came and I decided to take her shopping. To my surprise she could barely walk for five minutes without stopping. In fact, she was almost slumping over. Out of the clear blue sky, or so it seemed, she just couldn’t walk any distance and it was struggle just getting her back to the car. Clearly something was a-muck.

I went to talk to her doctor. Other than her high blood pressure, her heart was fine and her overall blood work was pretty good—more than pretty good for a woman her age. Keep in mind we are talking about an 87 year old woman at the time, a woman who had never had a major illness or operation her entire life. The closest she had come to any of that was when she had an operation on a bunion on her foot.

Yet now for some reason she was no longer able to walk comfortably. I began to notice how she was somewhat unsteady, how she began to reach out and hold on to things as she walked, and how she no longer had an interest in doing anything that required her to walk. Two years earlier this woman, my mother, walked more than a mile round trip with me in New York to eat breakfast.

My Mother the Dynamo

2006-12-28T20:58:00.000-05:00

My mother at the age of 85 was a dynamo. She lived on her own, paid her own bills, and took care of herself.......

My mother at the age of 85 was a dynamo. She lived on her own, paid her own bills, and took care of herself. She had been doing this for more than ten years since the death of my father. She was on her own.

My mother was often spotted walking to the pool in her community. A tiny women the senior citizens all around her marveled. It seemed as if father time had forgotten about her. There was no limit to what she could do. Walk 20 blocks, no problem, you name it. Up at dawn and awake at midnight she was a real dynamo.

My mother was very funny, a real character. She made people laugh and smile. She read the paper and watched CNN, she had opinion on everything and wanted to know your opinion. She was a wonderful person: always welcoming people into her home. She was noted for all of my 50 years for her great Italian cooking. I remember as a kid that all of my friends really looked forward to staying over our house. Donuts, spaghetti and meatballs you name it. Ravioli anyone?

Me? I was there with my mother when my fathered "passed away'; this was when I really started about her longevity, her health. I was thinking about her for years knowing that someday she had to live with one of us (I have a brother and sister). As the years flew by I started to think about it more and more. But she just kept going ang going without a health problem of any kind. Rarely a minor illness. She was the real energizer bunny.

At times, my brother, sister and I had discussions about putting my mother into some kind of "facility". But to be honest, to be honest now, I knew I would never be able to do it. While I had only mentioned it to a few people, I had made a promise to my father not long before he died. I promised him no matter what, I would take care of his wife of 55 years, my mother, our love. Dot. It was not a promise I made haphazardly. I made up my mind about this while we were taking care of my dying father. It seemed as natural to me as breathing. I already knew in my mind and my heart, I was the one.

I knew the day would come. I just didn't know when. Or how.

Maybe I Should Have Known

2006-12-28T20:44:00.001-05:00

I should have started this three years ago. My, how time flies. I have a lot of catching up to do for sure so just bear with me. Some days I’ll go back to the beginning and tell you our story. On other days I will tell you what is happening on the spot. I’ll vent about my mother. If she is up to it I will encourage her to tell you in her own words what is going on in her head.......

I became a CareGiver before I had any idea that the word existed. It all started back in late 2003 after a series of strange occurrences by my mother. I guess I should have known when my mother ran her car over an abutment and scraped off the entire side of her car on a tree. Me, more than 1000 miles away, I was told the car was not that bad. Two days later and on the scene, I found out the car was totaled. Fortunately, my little tiny five foot tall, 87 year old mother was just fine. At least that is what she and all the doctors told me. While I accepted it at the time I just knew something was not right. And this is where the story about me and my mother begins.

I am just beginning this Blog. If you somehow found me, welcome. Please feel free to say 'hi". If you are a care giver or if you believe you have something to add please feel free to do so. If you have comments make them.

Ok then, this is our story.

Bobby

All American Senior Care

Wishing everyone a Happy, Healthy New Year

2006-01-31T00:00:00.000-05:00

Dorothy after having too much fun over Christmas.

Bobby and Dorothy wish everyone a Healthy, Happy New Year!