Falling Again

Falling is still on my mind. The bruises that show up on Mom's arms or hands or feet--are they caused by falls? We don't really know. The bruises look serious, for one reason because Mom's skin is light-colored and very thin. The purples and reds are startling! But when we ask, the answer is something like, I don't know. I guess I must have bumped up against something.

My personal feeling is that Mom wanders during the night while Pop is asleep. She may or may not turn on the lights when she gets up, but beds have been found "slept in" in both extra bedrooms at various times. So we don't know if she has fallen in the night or bumped into furniture or run into a door.

And I can understand that she would be reluctant to tell us she has fallen. Two years ago I fell twice--in my classroom--in front of twenty-five high school students! Yes, I was embarrassed, but I was able to laugh at myself and get to my feet and go on with class. However, because the incidents happened only two months apart, I became alarmed after the second one. What if something was wrong? What if I had a tumor that was causing me to lose my balance? What if I was getting old and this was the first sign of more to come?

I didn't voice my fears, but they were real. And an older person is bound to have some of the same feelings, even if he or she cannot verbalize them. Or maybe they just don't want to talk about them, lest someone think they are a danger to themselves and they might have to go live somewhere else. Admitting that one has fallen must be (to their way of thinking) the same as saying they are no longer able to take care of themselves.

Communicating

I just found these lines on Mayoclinic.com and think they can serve as wonderful reminders for all who are trying to communicate with someone who has "significant memory losses."

The 10 Absolutes:
Never argue; instead, agree.
Never reason; instead, distract.
Never shame; instead, distract.
Never lecture; instead, reassure.
Never say "remember,"
instead reminisce.

Cuidado--Be Careful!

Stores post various warnings to increase customers’ awareness of possible causes of accidents. They usually translate the signs into Spanish, at least in Texas. For the customers’ safety? Of course, but also for protection against litigation.

Caution—Wet Floor
Watch Your Step
Hold Handrail (Escalators & Stairways)
Do not leave child unattended in cart.
Children must be accompanied by adults.
Step Up
Step Down….

While we all should heed the warnings to avoid injury, the most serious danger is for the elderly. And, of course, within that group, those with Alzheimer’s. According to statistics from the Center for Disease Control and Prevention, each year 1.8 million Americans over age 65 are injured in falls. For some, “the fall sets off a downward spiral of physical and emotional problems—including pneumonia, depression, social isolation, infection and muscle loss—that become too much for their bodies.” (Dallas Morning News, Nov. 9, 2008)

One in five hip-fracture patients over age 65 dies within a year after surgery, and one in four has to spend a year or more in a nursing home. Any underlying conditions, like heart disease or respiratory problems, increase the chances of a downward health spiral.

We cannot be too careful when it comes to being “caregivers.” A good place to start is with an extended arm offered anytime your patient is unfamiliar with the territory. Of course, the amount of “unfamiliar” increases with time as the disease progresses. So what was once the politeness of an escort becomes an absolute necessity in the prevention of falls, not only in stores, but also in simply going in and out of doors and up and down steps to the front porch or to the back yard.

It's a fact: we cannot be too careful!

A Soft Answer...

Proverbs 15:1, states, "A soft answer turneth away wrath: but grievous (harsh) words stir up anger." (KJV) If you believe what the Bible says, you may have studied and recognized this verse for its truth long ago. I have found it to be an extremely useful reminder in times of stress while teaching school. And, believe me, those stressful times come often! It is an effective "management tool" when the voices get loud, for the person in charge to lower his or her voice.

But never is Solomon's wisdom more needed than when dealing with someone with Alzheimer's disease. If only everyone could recite this verse before responding to the patient whose anger is escalating. Caretakers, memorize it. Loved ones, quote it before walking into the room of your dear patient. Then, when the patient begins to rant, it will be easier to respond quietly with overtones of love in your voice.

Will it always work? Maybe not. We don't know what will work with this awful disease from day to day. But it may improve our own blood pressure reading!

A Trip to the Mall

A few days ago, I took Mom to the large mall nearby for a pedicure. We each got one, and I really enjoyed it! I’m not so sure about Mom, though. We sat side by side, and once I turned on the massage in the chair where she was sitting. A quick frown from her side let me know that was not comfortable at all. So I just as quickly turned it back off. Periodically I would lean over to make sure she was all right. She was mostly engrossed in whichever toe the young lady was working on. She appeared to be fairly relaxed, so I relaxed, too.

When it was time, I asked Mom to select the right color of polish. I tried to get her to pick a bright red, but she would have none of that. She chose a color similar to the dark pink she has worn for years. Then I asked her if she would like flowers on her big toes. She agreed to have them, and the lady did a lovely job, a white flower with a touch of silver to make each one sparkle. I’m not sure this was Mom’s first pedicure, but I think maybe it was. Once before, a few years ago, I tried to get her to go have one, and she said she could do her own toenails.

I also am not sure how much the pedicure relaxed Mom, but I do know we had fun. After we left the salon, we “scooted” with our little cheapy flip flops on—all the way to the car, laughing and trying to be careful as we went. Then we went by Boston Market for a take-home dinner and headed back to the house.

One thing I noticed when we first arrived at the mall was that Mom did not shuffle when she walked. At home nowadays she always shuffles, but she seemed to be aware that she was out in public and needed to pick up her feet. I have been told the shuffling is a result of her loss of balance or her perception of space around her. Yet she walked through the mall as if she went there daily, albeit slightly slower than she formerly walked.

Overall, I think the outing was very successful, and I intend to plan more of them. Mom is quite a bit more relaxed out in the car with me than she is at home, where she tends to withdraw as she sits in her recliner, telling the same two or three things over and over. I think the “new” surroundings are refreshing to her, and her smile makes it all worth the effort to me.

One more thing: Two days later one of my sisters commented on her pretty feet with flowers on her nails. Mom said, "I did it myself."

Sharin' helps

There is something about sharing, and I have been thinking a lot about it lately. I started writing this blog to give people a personal view of what it's like to have a loved one with Alzheimer's disease. Now I am at the point of wanting to hear from someone else. Yes, I know I can Google some words and come up with a bunch of information; however, I think what I would really like to read is some of your thoughts and/or experiences.

So, if you have been following along for a while, why don't you write to me? I can do as I do with my sister's material--that is, I can gently edit it and then post it for others to read. I have received quite a few responses to the blog in the form of e-mails, more than in the "comments" section. If you would like to respond, my e-mail is www.jcwells@gmail.com. I will look forward to hearing from you and being able to share your stories, too.

If I Had Known Then....

Our sister, Diane, is sharin' today:

As a child I remember my grandmother repeating the same stuff over and over. Each visit to the nursing home found her deteriorating both mentally and physically. I remember thinking, “This is what happens to old people.”

Now, as an adult, I have experienced firsthand three loved ones’ being stricken with Alzheimer’s Disease: my father-in-law, my mother-in-law, and now my own mother.

There seems to be a similarity that occurs with each one, slowly taking away their abilities to think and speak, as each stage progresses: the onset of paranoia, sundowning, up most of the night wandering, and the physical problems associated with walking (shuffling), balance, incontinence, fear of bathing, etc. As a caretaker, it is most important to keep your loved ones’ surroundings “as is.” Don’t make changes.

My experiences have taught me many things, but the one thing that I would like to share (since this is a sharin’ site) is that you, as a caretaker (and loved one), have to program your mind and heart that this disease will take over control of the patient’s brain.

One of the hardest times I have faced so far was when my mother-in-law spoke to me as if she were an angry sailor. Her words were harsh and hurtful. Someone who was once a sweet, Sunday-school teacher had become angry and mean. Now my mother, too, has brought me to tears with her angry words. But as difficult as it is, I must keep in mind that two minutes will pass, and she will not remember what she said.

You should teach yourself something that will help you get past these moments: count to ten, take a deep breath, smile, look up, and say, “O.K., Lord, what’s next on the agenda?”

Thanks, Dianee, for sharin' your heart and giving some good advice. Love ya!

Sundowning

“Sundowning” refers to people who become increasingly confused at the end of the day and into the night. It’s not a disease, but it is a symptom that often occurs in people with dementia. The cause is not known, but factors that may aggravate late-day confusion include fatigue, low lighting, and increased shadows.

The Mayo Clinic staff offer these tips for reducing this type of disorientation:

·Encourage a midafternoon nap or quiet time.
·Keep a night light on to reduce agitation that occurs when surroundings are dark or unfamiliar.
·In a strange setting such as a hospital, bring familiar items such as photographs or a radio from home.

People with Alzheimer’s often want to go home or to check on their children in the afternoon. Their behaviors for that time of day in the past will often be triggered, and they will want to repeat them now. For example, if the loved one formerly started preparing the evening meal about 6:00 p.m., then he or she will often feel that it is urgent to “get home and start dinner.”

Some distracting activity at this time may be helpful. Pop often takes Mom for a ride around the neighborhood for a few minutes when she begins wanting to go home. Usually, after a short ride, she is satisfied to be “back home” when they return to the house.

www.MayoClinic.com is a good site to find answers for health questions.

What Red House?

The next evening after the last entry, I went to visit Mom. I decided to try to discover how much she remembers about the red-bricked house we lived in for six or seven years when I was young.

When I first broached the subject, she could not recall the house I was talking about. (We have taken her by the house in recent months.) I continued to describe it until she began to show a slight interest. She acknowledged that she could vaguely remember living there, that “it was on the north side of the street, wasn’t it?” That's right!

I brought up several memories of living on 19th Street, but she did not appear to connect with any of them. Finally, I think she became frustrated, either with me for “bugging her,” or with herself because she was unable to remember what I was talking about. Finally, she had enough and called a halt to that discussion with this rationalization: “Oh, well, what does it matter? We can’t go back there, can we?”

Mom’s mother had a serious memory problem for the last few years of her life. Back then the nursing home people told us she had “hardening of the arteries.” Perhaps it was what doctors now refer to as “vascular dementia.” But what I remember about her memory loss was that it was more predictable than Mom’s. She appeared to lose happenings “in order,” so to speak.

For example, when we visited, for a while she knew all of us, Mom, my four sisters, and me. Later when we would go to see her, however, she thought I was her daughter. Then eventually she looked upon my youngest sister, six years old at the time, as her daughter. In her mind, according to the way she reacted to us, she was moving backward in time and reliving different periods of her life.

As she moved backward with the age of my sister for Mom, she also “lost track” of her second and third husbands. Mom’s father died when she was only fifteen years old; then her mother remarried. Eventually her second husband died, and she married another man. This latest one is the one she forgot soonest, and she worked her way backward to her first husband and Mom as a little girl. When we asked her what she did that day, she told us about all the chores she did that morning, how she milked the cow, washed the clothes, or went to the field to work, and then came back in to cook lunch for the hired hands or “the threshing crew.”

My grandmother and my mother are the only two people I have ever been around for long periods of time who have had significant memory-loss problems. I have visited in nursing homes with patients who remembered very little; but, of course, it is quite a different matter when it is your loved one.

We lost our dad suddenly at the age of forty-six years. We managed to survive through all the stages of grief, agonizing as they were. But losing Mom slowly is just as painful, in a different way. When I think, "I need to call Mom and ask her what she thinks about...," my hand stops in midair as I am reaching for the phone. Then I remember. "Oh, never mind. She doesn't know."

But I call anyway, just to chit chat for a few minutes, being careful to keep my voice light and filled with love for her.

Fond Memories

Do you know the Station Man, the Station Man, the Station Man?
Nancy and I sang these words to the tune of "Do you know the Muffin Man?" We were about six years and three years when we first moved to the red house. That's when Daddy and his father opened the service station.

By the time we attained the grand ages of nine and six, we had developed the quaint little habit of going to the restroom together. It only seems unusual looking back; at the time it was the most natural thing in the world for one of us to sing and/or dance in order to entertain the other one who was sitting on the toilet. The outer edge of the white enameled tub was several inches wide, as I remember it. So we took turns standing up on the edge of the tub to dance along and sing the "Station Man" song. As we danced, we waved one of Daddy's station hats to add interest.

I don't remember ever hearing Mom yell to us, "You girls better get down before you break a leg or arm!" Of course, by this time our third sister had made her appearance, so Mom was probably quite busy in the absence of a dishwasher, a clothes dryer, permanent-press clothes, etc.

But she always made a point to remind us when it was time for our father to be home. When she heard the pick-up door slam, she called out, "Daddy's home!" There then ensued a race to the front door, with two of us yelling at the top of our lungs, "Daddy's home! Daddy's home!" He held out his arms with big hugs for each of us and then turned to Mom, most likely with Vicky in her arms, to greet her with a big smooch.

As I remember times like these, I can't help but wonder what Mom remembers....Does she have pleasant memories at times, or are they all gone? The disease is infuriating, as well as heart-breaking. I think I'll talk to her about our time at the red house the next time I am with her. That makes me smile. Maybe I can get a smile from her!

The Station Man

I talked with an older lady friend recently, and she asked how Mom is doing. The friend is almost eighty years old and is having some problems with her memory, but she does not understand much about Alzheimer’s. I explained that Mom is on medication that helps keep her calm and congenial. The friend asked, “Does it help her memory?” The answer is, “No.” The medicine stabilizes her moods and prevents a great deal of the anger and agitation she has experienced in the past year. But her memory is unpredictable. No one can anticipate what she will remember.

My dad, along with his father, ran a service station when we were young. My grandfather closed the station upon the death of my father, after fifteen years of its being a “landmark” in the little town where we grew up. This occurred almost forty years ago. The building has been closed for quite a while, yet it still looked like it always did until recently. Now someone has opened a flower and gift shop, adding some decorative touches to the outside and making it look quaint and interesting. It really is lovely to drive by and see plants and flowers where the cars used to drive through to "fill ‘er up" with gasoline.

We all thought Mom would be happy to see the “station” in use rather than to see someone come in, tear it down, and build something modern (and unrecognizable) in its place. But that was not the case. One day Pop drove by the particular corner to show her how someone had fixed up the “station.” Mom’s response to us later was, “I wonder what your dad is going to do for a living now, since they rented that building out to someone else.”

At times like this, she thinks Pop is “a friend.” But at night she often worries about our dad. They used to close the station about 8:00 each evening. So now she wonders where he is. Sometimes she is slightly upset, as if he is just taking too long to close up. But at other times she seems to feel that he isn't coming home.

A few weeks ago Mom went through a time when she thought Daddy had abandoned her. She didn't call him Daddy (she rarely does that nowadays). She just called him "her husband." She said that she must have had a part in his leaving her; however, she did not know what she had done wrong. One of my sisters reassured her that she had done nothing wrong, that this was one of the dirty tricks her mind is playing on her! To have her think our dad might have left her is one of the saddest things to all of us.

Tonight I don’t know how to end on an upbeat note. Maybe I shall dwell on the fact that Mom is in excellent health and always glad to see us come in the front door!

Medication and Opinions

I mentioned a few days ago a medication, Seroquel, that Mom has been taking for a little over a year now. Just as with turmeric, I began to read about it because of someone else’s suggestion. A friend discontinued her mother’s prescription because she read quite a few negative articles on the internet about the increased risk for mortality associated with the off-label use of quetiapine fumarate (Seroquel) for dementia-related psychosis in elderly patients.

From what I understood, the reason Dr. Tee prescribed the medication for Mom was precisely this, dementia-related psychosis. So, after reading many articles all of which confirmed what the others were saying, I quickly went about trying to alert Pop and the sisters to get Mom off this stuff. In the middle of the week during which I was stirring everyone up, I went to an annual appointment myself. My ob/gyn has an undergraduate degree in chemistry. So I brought up this subject to him, relating to him the content of the frightening articles I had read.

His advice? First of all, calm down. Then, if someone is under the care of a neuropsychiatrist, he/she is going to be all right. This kind of doctor is familiar with the exact dosages required for his/her patients, whatever their condition may be. The problem arises when poorly informed people distribute inaccurate amounts to various patients in nursing homes. Because the caregivers are trying to calm someone or even sedate him or her, they use this drug unwisely.

His conclusion is that when properly used by a competent and qualified person, there is nothing to worry about. My conclusion is, if Mom were in an ordinary nursing home (not specifically for Alzheimer’s patients), I would be very concerned. Since she is not in a home(she's at home), I am going with my doctor’s assurance that she is not in any danger from using the professionally prescribed amount at this point.

Turmeric Has Two R's

Yes, turmeric really has two r's, though many people misspell or mispronounce it. It is an inexpensive substitute for saffron. I just spent some of my Sunday afternoon reading about turmeric. The reason I felt the need to read about this common Indian spice is that someone recently mentioned that sprinkling it on our food is good for our brains. Suggesting its possible use for Alzheimer’s patients, the person seemed to think he could tell a difference in his mental acuity after only a few days.

After reading for a while, I decided to write to warn people that the old adage still stands: if it sounds too good to be true, it probably is. In other words, you should check with your doctor before consuming inordinate amounts of the stuff. I found lots of hopeful information and many “maybe’s.” Curcumin (the active ingredient in turmeric) has been used for thousands of years as a safe anti-inflammatory in a variety of ailments as part of Indian traditional medicine. A 2004UCLA-Veterans Affairs study involving genetically altered mice suggests that it might inhibit the accumulation of destructive beta amyloids in the brains of Alzheimer’s disease patients and also break up existing plaques.

A small study of Asian individuals between 60 years old and 93 years old found less cognitive disability in those who regularly ate foods containing turmeric. In other promising but very early results from laboratory, animal, and human studies, curcumin has kept several kinds of cancers from starting, growing, or spreading. When turmeric was given to laboratory animals with diabetes, both blood sugar levels and blood cholesterol levels showed general decreases.

Traditionally, turmeric has been taken orally as a remedy for bronchitis and other respiratory conditions. In one study, it was the most effective of 25 herbal products in killing H. pylori, the bacteria that causes stomach ulcers.

So, why the CAUTION? Because turmeric may not be well absorbed from the intestines, many animal and human studies have used injected forms of turmeric or chemicals derived from it to achieve effective blood levels of its active components. While they may be commercially available in other parts of the world, injectable forms of turmeric are not sold in the United States. That's the part that sends up a red flag for me.

Individuals with stomach or gallbladder conditions should not take supplemental turmeric, because it may alter production of stomach acid and increase production of bile, possibly worsening those conditions. Pregnant women should also avoid taking large amounts of turmeric due to the possibility of a miscarriage. And supplemental use is not recommended while breast-feeding.

Just thought I would throw out a few ideas for those who have heard about the use of turmeric. It may be good, but I believe in checking with the doctor first. The medical community is reluctant sometimes to grab on to new remedies (or old ones brought back around). But they usually have a great deal more information on hand than most of us. For example, Seroquel…well maybe we’ll talk about that tomorrow.

One Year Later...

I began chronicling this portion of our lives on June 24, 2007. Since that time, all of the physical causes for memory loss that the neuropsychiatrist mentioned have been ruled out. Whatever she asked Pop to do, medically, he did. And Mom’s health continues to be good (for an 83-year-old!). She actually seems to be in better health than Pop.

However, she has begun to shuffle her feet instead of walking normally. Evidently she has lost her sense of space. Most likely the dementing process has damaged the areas of the brain that control muscle movements. When a person begins to have difficulty walking, it is time to do an inspection to eliminate dangerous areas, such as: bathrooms where handrails are needed, scatter rugs that may slide when a person steps on them, and traffic patterns that become cluttered. (See pages 89-90 of The 36-Hour Day for a more detailed list of safety suggestions.) We are all on the lookout for areas concerning Mom’s safety.

One year after the first visit, Mom is on three medications, the antidepressant, Seroquel, and Depakote. The doses have been adjusted a time or two, but the three work well together. Her mood is stable most of the time, and sleeplessness has not been a problem. Sometimes she becomes quite confused in the late afternoon though. At these times Pop takes her for a ride around the neighborhood. Upon returning home, she appears to be more content and feels “at home.” The most important (and most difficult) aspect concerning the giving of medication is consistency. The more dependable the schedule for giving her her pills, the more predictable her behavior. And that, my friends, cannot be stressed too much!

One year later, the “no-driving” stipulation is in effect. Only occasionally does Mom mention something about driving her car, and that is usually when she has missed a dose of her medications. That is when her anger flares almost out of control. But she does not drive. (She thinks she does drive, most of the time.)

As far as their financial business, Pop is just as private as always. There was talk concerning who has his Power of Attorney and who has Mom’s. But the truth is, we don’t really know. At first, they had each other’s. He insisted he would take care of the matter, but no one has been informed about it if he has.

The home-health directive has not been followed the way Dr. Tee originally asked for it to be. She wanted Pop to have someone into the home three times a week to help with house-cleaning, cooking, or visiting with Mom. So far none of this has come to pass. He has had one lady come to clean. She was so thorough that he says he only needs her about once a year. Of course, if she had not been efficient, he would not want her back at all. I think they just don’t want “strangers” in their home. They (he, especially) would much prefer that the daughters make a schedule and take turns bringing them food and helping clean. For the record, they get this treat three times each week by the three who live closest to them.

Be an Advocate

I have copied this info from the national website of the Alzheimer’s Association:

On January 20, 2009 - just a little more than five months from now - a new President of the United States will take office.

No matter who you want to win the election, as supporters of the Alzheimer's Association, there is one thing on which we all agree: the next president must make the United States the world leader in Alzheimer’s care and research!

That's why, as part of our advocacy and awareness initiatives for World Alzheimer's Day, we're asking caring and compassionate individuals like you to sign the Alzheimer's Association Proclamation to the next President! Make your voice heard in support of more Alzheimer’s care and research!

We need at least 50,000 signatures to be delivered to the new president in January!

Inauguration Day may seem far away, but we don't have any time to waste. We need to build a constituency to gather 50,000 signatures and impress the new president!

Please sign the Proclamation to the Next President now. By clicking on the following link, you can fill in the info needed to add your name to the proclamation:

http://alz.kintera.org/proclamation

Wednesday, 8/20/08

Gloria called Channel 13 KERA to find out why we were unable to find the documentary listed for Sunday. They said that it will be aired on Wednesday, Aug 20, at 7pm for us.They also said that if we like it and want to purchase a copy of it, it will be available to purchase.

The Forgetting

The Forgetting, A Portrait of Alzheimer’s

Airs Sunday, August 3, 2008 at 9 pm ET on most PBS stations. Check local listings.

This info was sent to me. I'm posting it here in the event someone hasn't heard about it. It originally aired on PBS in January, 2004. It is a 90-minute documentary based on the book of the same title, and it will be followed by a 30-minute program about the future of Alzheimer's.

The CT Results

Diane, one of the five daughters, recalls accompanying Mom and Pop to the doctor’s visit in which the doctor explained the results of Mom’s CT scan. This appointment took place in January, 2008:

With a lump in my throat and my heart feeling as if it were going to explode, I watched and tried to listen. The doctor used the tip of her ink pen to point out each area of Mom’s brain where miniature strokes had occurred over time. I fought back tears with all my might. I could not bear to look at my sweet mother sitting next to me without the slightest idea of what we were talking about…or did she have an inkling?

As the doctor finished, I took a deep breath and used all of my strength to turn toward Mom, making sure to hide what was exploding inside of me. There have been very few times in my life that I had to listen to something that hurt this bad and not cry. “Knowing” that Mom is sick is one thing, but “seeing” the actual damage on the brain scan was painful beyond words.

Pop was quiet. I’m not sure how well he could hear and not sure what kind of emotions he might be fighting. Mom was angry and ready to leave. They returned home, and I went back to my job. Getting my mind back on my work would help me get through the rest of the day until I could get home and fall apart.

That was my plan, but I forgot one major thing. Or should I say FOUR major things— my sisters—each one of them anxiously awaiting my report. One by one, we cried together over the phone, as they seemed to live through the experience of the previous hour along with me. I would now no longer need to go home and fall apart. Together, our prayers will get us through this. I am so thankful for my god-given support group!

The Key is Patience

One of our nephews had a car accident in October. Because his vehicle was totaled (he was all right), his mother asked if she could borrow Pop’s pickup for a while. She intended to drive the borrowed vehicle and allow her son to drive hers until they could find a pickup to purchase for him. After a week or two, Pop decided he needed his vehicle back, but he would loan Mother’s car. Well, Mom exploded. She needed to have her car in the garage so if something came up, it would be there. It seemed that perhaps she was suspicious of everyone’s motives at that point. She may have been sensing that we were “ganging up on her.”

The sister had her picture made standing in front of Mom’s car and sent it to Mom with a thank-you note for letting her borrow her car. Sis hoped this would be a visual reminder of where the car was and that it was safe. Mom wadded up the picture and the piece of paper and discarded them both. She continued to get upset any time she passed through the empty garage until the vehicle was eventually returned.

Once Mom’s car was back in its proper place, we again were concerned that she might try to drive herself somewhere. One of our brothers-in-law demonstrated how simple it is to disable the kind of car she has. You just open the trunk and look at the left tire well for a red button. Pushing that button disables the car, and a slight pound on the side of the tire well allows it to run again. Pop said, “No,” and that was the end of that little effort.

Whether your car has that little button is uncertain, but I feel sure there is something similar for all cars. Checking the index of the little book in your glove compartment is probably the easiest way to start looking. Of course, simple as it may be, it won’t work if you get told “no,” as we did.

A neighbor suggested another fairly simple solution. He told us he had his wife’s car painted a different color. Then she no longer paid it any attention. Since she did not recognize it as her car, she did not insist on driving it. And, no, we did not even mention that suggestion to Pop!

For a few months Pop or one of the sisters made it a point to drive Mom to the beauty shop every Saturday and to the grocery store when she wanted to go. Then one day last spring she got in the car and drove off. She did not go far, just around the block and back home. Pop was in the back yard and did not know when she left. She told him she couldn’t find her way so she came back. I am so thankful she was able to get right back home without making a wrong turn! That was when Pop finally took the car key off her ring! Gradually as weeks passed, Mom stopped mentioning the car. She can see it in the garage, but she has not said anything else about driving.

No driving, are you kidding?

The “no driving” edict was one of the most difficult to implement. At first, it seemed it might be impossible to enforce.

I first approached Pop early last summer with the idea that he hide Mom’s keys. He told me that she was still a good driver and it would crush her not to be able to drive anymore. He said she only goes to the grocery store and the hairdresser. Well, both of these places are located in the neighborhood, but you have to cross a busy four-lane street to get to the grocery store. Pop did not appear to be worried, so I went home that day trying to put away my worries.

Later in the summer we went to our first appointment with Dr. Tee, during which she gave us the official diagnosis and the instructions for Mom. Upon receiving her opinion that Mom should not drive, we sisters redoubled our efforts to persuade Pop to take Mom’s keys. Nothing we said had any affect, and she continued to drive her car. More than once she used her “emergency” cell phone to call someone to come lead her home.

But Pop seemed to be living in denial. (And how difficult it would be to admit the truth at this point! They had enjoyed quite a few years together, and he surely did not want to think of finishing his life’s journey caring for his sweetheart who no longer knew who he was.) And Mom continued to drive.

Word moved through our little family grapevine one Saturday morning that Mom drove herself to the hairdresser. Immediately one of the sisters who lives close drove to the shopping center and sat in her car in the parking lot until Mom came out. She later reported that Mom drove home safely, after following a very slow and circuitous route, and was unaware of her being in the car behind her.

One day Pop went to the local hospital (several miles from their home) for a procedure which, as it turned out, required him to stay overnight. Mom went with him. When she realized later that night that he had to stay, she decided to drive home. She was unable to find her way out of the hospital so she called one of her daughters. As she wandered, a nurse approached her, took her phone, and spoke emphatically to the sister, “You need to come get her. She does not know where she is!”

Soon after that evening, one of the sisters took Mom’s car key off the ring of keys in her purse and took it home with her. When Pop discovered this, he was irate! He threatened everyone in the family to get the key back. I told him I didn’t have the key, but I would get it back to him. No one had any idea he would react so violently, but maybe he took it as an affront to his judgment. We don’t know. At any rate, I got the key back and took it to him without saying where I found it. Next followed some anxious weeks of wondering whether he would let Mom drive again.

Not to be Home Alone

One thing Pop is in great need of is the opportunity to get out of the house. He has always been very active, working in the yard and having a garden among other things, since he retired from his career work. Traveling has also always been important to him.

Now, if he goes outside to work in his shop, Mom loses track of him. If he wants to go to a particular store, such as Home Depot or the grocery store, Mom must go with him; however, she does not always want to go. She may even refuse. One time he took her with him, and she would not get out of the car once they got to the parking lot. So he left her in the car alone. Fortunately, Mom did not go in search of him, wander off, or have a heat stroke!

One thing the doctor recommended was “brain therapy,” also referred to as “adult daycare.” Centers which offer this service for an hourly fee, half-day, or whole-day rates, provide excellent care for an individual suffering from some type of dementia. Various activities are structured throughout the day, and lunch is provided. These places provide mental and social stimulation for the client, while allowing the caregiver time during which he/she can be free to run errands, socialize, rest, or do whatever is needed.

Mom went to one brain therapy session with one of my sisters last fall. They enjoyed a lovely lunch with those in attendance; and then Mom, with purse on arm, stated that she was ready to go home. She did not belong there with all those “old folks.” Pop made one more effort to go there one day, but Mom recognized the place as they approached it and refused to go in. End of that part of the story….

The Dr.'s Directives

No driving. No staying home alone. Wear a “safe return” bracelet. Go for brain therapy two or three times a week. Have some home health kind of help two or three times a week (did I forget to mention that one earlier?). Take the medication consistently. Change the powers of attorney. There it is—in a nutshell! It took up five lines of typing.

However, as I write this, in two more days it will be a year since we first received those instructions. Pop has taken Mom to an appointment with Dr. Tee several times during the year, and each time the doctor has questioned the two of them, plus whichever sister went with them, concerning the implementation of her suggestions. After each visit she has reiterated the importance of following this plan.

The first thing to “not work” was the bracelet. I ordered it soon after the first request, received it in the mail, and took it to Mom. I was told later that when I left Mom asked Pop to remove it because it was too tight and very uncomfortable. So he did. As far as I know, she has never worn it.

Fortunately, she has only wandered up the street once that we know of, and she came back home fairly quickly. But the accommodating of her (in order to keep her calm and happy) is part of what has been so frustrating. On the other hand, if I were there 24/7, I might also choose to accommodate, rather than endure her wrath when she becomes so upset. For the record, they are about the same age, so he, of course, has several of his own issues with which to deal.

Monday's Thoughts

I am not writing in order to assign blame to anyone for anything, but I do hope to accomplish at least two things by publishing my thoughts (worldwide?!).

First, perhaps those of us directly involved can reason together more easily, simply by having looked at the situation in print.

Second, I hope others will benefit from our experiences and perhaps even do better than we have. We are definitely learning as we go. As we become wrapped up in our problems, it is easy to get to the point where we think we are the only ones who have ever gone through something like this. Yet we know what the Bible tells us:

Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you….1 Peter 4:12.

This horrible disease has not just happened to our mother and our family, but it is ravaging homes and lives everywhere we look. The best thing we can do is to pray, for our loved ones, as well as research foundations, government grantors, corporate sponsors, whomever we can think of who might contribute something.

My Expectations

What did I expect after our visit to the specialist? After avoiding the issue for so long, up to the point that things were really getting serious, I had hopes that the doctor’s diagnosis, along with her explicit instructions, would help bring order back into our lives where Mom was concerned. We had been especially worried about her driving, her safety, and the safety of others.

Now we had medication and several directives. Mom was no longer to drive a vehicle. She was not to be left alone (24/7). We were to get her an ID bracelet with a “Safe Return” number on it. Also, the doctor wanted her to attend brain therapy sessions (adult daycare) three times a week. This was not only for her benefit, but Pop’s as well, to give him some free time to himself.

Mom has always had great respect for medical doctors, but she has never been the kind of person to go to one for every tiny sniffle. She has had the attitude of “mind over matter,” if you don’t mind, it don’t matter; and usually she just wears out whatever ailment she has. She has been in the hospital five times to give birth to her children, and she underwent one surgery. That’s just about the extent of her medical history until recently.

Pop, on the other hand, believes in using every available bit of modern medical knowledge to take care of himself. He does not believe in waiting around and taking a chance that some condition will worsen. He goes faithfully for check-ups, and he takes excellent care of himself.

Knowing how they both feel about the medical community, I can only say I am surprised at the way Dr. Tee’s directives have not been followed. But I think I’ll stop for now. God bless everyone who’s reading!

No Relief--Just Frustration

Somehow I thought finally getting Mom to an Alzheimer’s specialist and having a professional diagnosis would be a huge relief. We had fretted and sidestepped issues for years, with Denial as our method of handling of choice. As distant as ten years ago, Pop remembered Mom scheduling an appointment and then recording the date incorrectly. They drove fifty-five miles to see a doctor on the wrong day.

Through the years we gently jested about Mom’s memory. She actually laughed, too, making reference to some things she just could not seem to remember any more. She attributed it to age—like everybody else’s memory when they get old.

There were quite a few years that no one could tell anything was wrong, outside our immediate family. She was always very outgoing and always enjoyed being the life of the party. She was able to continue socializing without letting anyone know of her memory loss, mostly, I think, by keeping the conversation on a rather superficial level.

When things started to be more noticeable, the two quit going out with friends so much. One excuse was that it was so hard to hear in restaurants. They still went to church, but they would leave as soon as it was over, not stopping to visit with anyone. I suppose they felt no one would notice anything different. Though they never discussed it, we were aware that no one was supposed to know.

There is a stigma attached to Alzheimer’s disease that is more prevalent in their generation than in mine. Only in recent years has the disease begun to be understood and knowledge of it disseminated, via the internet mostly. So people in their eighties, who do not usually become as familiar with computers as the rest of the world, do not have an updated picture of the disease. They still think people will think they are crazy or unable to function normally.

One article I read, dated March 21, 2006*, reported on 539 caregivers of either a parent or a spouse. Among the findings was that the caregivers’ concern about Alzheimer’s stigma delayed diagnosis by up to six years! This in itself is an unnerving fact. Six years’ delay in treatment is especially significant, since most of the medications right now are designed to maintain the status quo.

In our society, with its increasing emphasis on youth, self-control, and productivity, it is sad to think how our older citizens must feel as they become less productive and less in control of their own lives. Down deep there is a fear that people will treat them differently, “if they know.” And this fear is based on their perception of the disease, which means it is the truth for them.

* “Stigma May Slow Alzheimer’s Diagnosis,” http://www.medscape.com/ .

The Trip Home

Mother rode in the front seat with me on the trip home. Pop sat in back staring out the window in silence. When I directed a comment or question to him, he could not hear me and would lean up for me to repeat more loudly. Apparently Mother was not going to talk to him. After a while, I started asking her to repeat my question to him. She did and seemed to be fairly relaxed by the time we arrived home. Then I "messed up."

I called one of my sisters to let her know we were home. Mother became upset because I "told her." She said she told me before we left the office just to keep all of this to myself. I assured her that I did not understand that that was her wish. Then I asked, "Did you really intend for Pop and me just to keep today to ourselves and not tell even my sisters?" And she replied, "Yes, because now the whole world will know!" I don't really know who she is worried about knowing anything. I reminded her that most of our old friends are no longer around, so who's to know? She couldn't really answer me.

I talked to another sister on the phone, and she assured me that she was bringing beef tips and rice for dinner after work. So, after a few more minutes of going over the doctor's notes and instructions, I left. On the drive home, I called Pop's daughter, our "Oregon sister." As I related highlights of the visit, she assured me that the doctor sounded professional, efficient, correct, and so on. I felt better after having run everything by our R.N. Sister, even though I was so tired by then I could hardly talk or listen. I may have had an angel helping me drive. But I now thoroughly understood why they titled that book The 36-Hour Day!

The Restaurant

In "real time" today is my birthday. At this point in my life, I am just thankful for another one! But thinking back, I remember how Mom always made all of our birthdays special. Not that she went "all out" by renting a place for dinner or decorating her house with balloons. That was not her style. But she would cook our favorite foods, have a present ready, and have all the sisters and brothers-in-law around. One of my favorite meals she prepared for me was: red beans (pinto beans to some), soft-fried potatoes, fried okra, boiled squash, and sliced tomatoes. Before the day was over, at some point Mom would say something like, "Do you know where I was thirty years ago today?" or "I remember what I was doing fifty years ago today!" Now I find myself doing the same thing with my two sons on their birthday. Wow, I remember where I was thirty-two years ago today! And so we hand our memories down....

Back to the appointment now: Pop had an appointment a couple of blocks away from where we had been with Mom, so Mom and I took him there when we finished at Dr. Tee's office. Then she and I went to a nearby restaurant for salad and iced tea. The place was almost empty, and the waitress seated us in a lovely garden spot partially sunlit, with some shade from the nearby plants. She was precious! As she gave us our menus, she asked, "Are you ladies sisters?" I smiled and said "No, but thank you." Mom seemed pleased. Later as I told Pop what the young lady said, Mom asked if I had been embarrassed. I told her no, that I took it as a compliment. Again, she seemed pleased. But in between seeming pleased once or twice, she continued to erupt in tears of anger. I use the word anger because when I suggested that I understood she might be fearful, she quickly informed me that she was not fearful. She was mad!

Mom continued to bring up the fact that her memory was just as good or better than Pop's. And doesn't everyone get forgetful sometimes? Following the doctor's lead, I answered her each time with, "Yes, but the doctor said you have a significant memory loss. She also said it's hard when a person has a memory problem for that person to understand the severity of it because he or she does not remember things well." I am not sure I quoted Dr. Tee verbatim, but Mom was not too interested in the doctor's opinion anyway!

The Conclusion of the Appointment

Dr. Tee first of all wanted to see us back in one month. (Pop made the appointment before we left the office.) Second, she wanted Mom to rule out possible physical causes for her memory loss by seeing a primary care physician and getting a urinary analysis, TSH (thyroid), CBC and Dif., plus a CT scan. (Mom chose a CT over an MRI, and I don't blame her a bit. Forty-five minutes in a tube did not appeal to her.)

The doctor gave her a prescription for an antidepressant and some samples of a more expensive pill called Seroquel. The second was to be used only in the event of extreme agitation and/or sleeplessness. When Mom continued to act as if she might or might not take the medication and follow the doctor's instruction, Dr. Tee explained it to her this way: I can help you maintain the status quo if you will do as I ask and take the medications. You and your husband will both feel better, and you'll be able to continue living in your home. Do you want to continue living where you live now? Yes? Well, then, you need to take the medication. And Pop, you need to see that she takes it.

In addition, Dr. Tee added a no-driving stipulation, 24-hour supervision (not to be by herself at all), and she must have help with her finances--no more handling her checkbook by herself. And Pop must get a different power of attorney. At this point, they still held each other's POA.

That concluded the appointment that lasted forever (well, almost). The three of us were exhausted, but we had one more appointment on the agenda for the day. Whew!

Time for a Humor Break

Humor is such a delightful and necessary element of our lives. Maybe I'll write more about its necessity later, but for now I'll just mention that never is it more beneficial than when people are so extremely stressed out! So, let's laugh a while. If something here tickles your funny bone, be sure to pass it along to someone else who needs more laughter (which is usually most of us).

Women over 50 don't have babies because they would put them down and forget where they left them.

A friend of mine confused her Valium with her birth control pills... she has 14 kids but doesn't really care.

One of life's mysteries is how a 2-pound box of chocolates can make a woman gain 5 lbs.

The best way to forget your troubles is to wear tight shoes.

The nice part about living in a small town is that when you don't know what you are doing, someone else does.

The older you get, the tougher it is to lose weight because by then, your body and your fat are really good friends.

Just when I was getting used to yesterday, along came today.

Sometimes I think I understand everything, and then I regain consciousness.

I gave up jogging for my health when my thighs kept rubbing together and setting fire to my knickers.

Amazing! You hang something in your closet for a while and it shrinks 2 sizes!

Skinny people irritate me! Especially when they say things like...'You know, sometimes I forget to eat!' .....Now I've forgotten my address, my mother's maiden name and my keys, but I have never forgotten to eat.

The trouble with some women is that they get all excited about nothing, and then they marry him.

I read this article that said the typical symptoms of stress are eating too much, impulse buying, and driving too fast. Are they kidding? That's my idea of a perfect day!

LIVE SIMPLY...LAUGH OFTEN...LOVE DEEPLY

--from an email. We really DO need to laugh more, and more often! Love to all...jw

Testing, testing...

It occurs to me in looking at the first three blogs for this site that the reverse order will not seem natural because of the way I am relating things. If you tell a friend about Sharin' Support, you probably should say, "Start with June24." To start reading today about testing might cause someone to wonder if the author is even sensible. Also, today's heading about testing refers to the same day of the diagnosis, June 17, 2007. There could have been some tests earlier, but things didn't work out well.

One time a couple of years ago we (sisters and I) convinced Pop to take our mother to a doctor. He took her to their "family doctor," not a gerontologist or any other kind of specialist. Pop later related that the doctor put a piece of paper in front of Mother and asked her to answer the questions. She took one look at the list of questions and became irate. So Pop (in order to stem off an explosion most likely) wadded up the sheet of paper and tossed it into the trashcan. Since I did not see the paper, I do not know what "set her off." However, there are many resources one can check on the internet to read about symptoms and early signs. I am including a few questions here as an example:

The symptom screener can help you find out if the problems you're noticing could be symptoms of Alzheimer's. Answer the eight questions below about changes in your loved one and share them with the doctor. For each question, answer "Yes, a change" or "No, no change" or "Don't know."

"Yes, a change" indicates that there has been a change in the last several years caused by cognitive (thinking and memory) problems.

1. Problems with judgment (problems making decisions, bad financial decisions, problems with thinking, etc.)

2. Less interest in hobbies/activities

3. Repeats the same things over and over (questions, stories, or statements)

4. Trouble learning how to use a tool, appliance, or gadget (e.g., VCR, computer, microwave, remote control)

5. Forgets correct month or year

6. Trouble handling complicated financial affairs (balancing checkbook, income taxes, paying bills, etc.)

7. Trouble remembering appointments

8. Daily problems with thinking or memory

Talk to your doctor or health care provider, especially if you've answered "Yes, a change" to two or more questions.

The preceding was taken from an advertisement for Aricept, a medication that may slow the progression of Alzheimer's.


Now, back to June 17, 2007--the Testing

The doctor, I shall call her Dr. Tee, asked Mom questions in a frank manner, very clearly, with just enough elaboration that we could understand what she was asking for, but Mom continued to barely conceal her anger (and could it be contempt?) as she tried to field the questions and come up with adequate answers.

She reminded me of students I have had who did not know the answer but did not want to admit to the fact. They would answer with a comeback of their own to make it seem like, well, of course, they knew the answer. Why did I ask? But when pressed for more info, they really did not know.

For instance, Dr. Tee asked Mom her age. Mom chuckled and replied that yes, she knew her own age.

Dr. Tee: Well, what is it?

Mom: Well, I'm in my seventies.

Dr. Tee: What is it? (All this time Mom kept looking to Pop and me for a hint or sympathy or something.)

Mom: Oh, 75 or 77. You can figure it up.

Dr. Tee: Yes, I can; I have your birth date right here on the computer. But I want to know if you know. Most people know their own age when questioned and can just blurt it out.

This was maybe the first "big" shock to be revealed. There were more to come.

Upon Dr. Tee's request, Mom was unable to draw a clock with the numbers on the face and then draw hands on the face indicating the time to be 11:10. Her drawing when asked to do this made me want to burst into tears instantly. But Mom continued to act as if she did not understand what the big fuss was all about. She asked us, "Isn't everyone forgetful from time to time? His (Pop's) memory isn't so good sometimes." (And then to me later, "His is a lot worse than mine. Why's he trying to put all of the blame on me?")

The next part seemed to come straight from The 36-Hour Day. Dr. Tee told Mom she was going to say three words. She wanted Mom to repeat them and then remember them because she would ask her to repeat them again in a little bit. Mom repeated "tulip, brown, umbrella." The doctor changed the subject for one or two minutes and then asked Mom to repeat the three words. The whole time I was repeating them in my mind, thinking, Come on, Mom, you can do it. She could not name one of the words. First hint from the doc: the first word is a flower--no response. Did I say rose, daisy, or tulip? Rose. And the same with the other two words. Even with the hints, Mom did not appear to have a clue what the doctor was talking about. This shock was really bad.

We talked about where they go during an average day, what kind of activities they are involved in, who handles the finances, who does the driving. The responses from Mom did not get any less hostile as time went on.

Mom and the doctor went across the hall for the physical testing. After she put Mom in that room, she came back briefly to talk to Pop and me. She said, "I can't leave her in there for long because she will become more upset." So listen quickly, in other words. She asked Pop how many vehicles they have; he said, "Two." She asked how many drivers; he said, "Two." She then said, "No, you have one driver; get rid of one of the vehicles somehow." Then she went across the hall to check Mom's reflexes, heart, blood pressure, I suppose. When they came back to us, she mentioned that Mom was very healthy. She also said she has a slight heart murmur. No one was aware of that.

The Trip and the Appointment

The trip to the doctor's office was miserable. Looking back, even though it's been a year, I still feel very, very sad about it. Mom insisted that Pop sit in the front seat with me. She sat in the back and cried most of the way. She was so frustrated, kept wondering what she had done wrong. We tried to reassure her and relieve some of the fear/pain, but she would have none of that. Our comments only caused her more anguish, and she continued to be angry and threaten us. She said she would go, but she would never let either one of us forget it. She did not intend to forgive us!

The appointment lasted 1 1/2 hours. I wish I could say it didn't seem that long, but it did. And it was painful: to watch this doctor reveal the severity of Mom's condition was excruciating. I suppose we all have enabled Mom because we love her and try to help her be comfortable. We supply words when she hesitates and give her hints to try to help her remember things when we are talking.

To sit while this woman asked questions, and not be allowed to supply any of the answers for her, was very difficult. She would look to Pop and me for help. He mostly stared at the wall behind the doctor's head. I think this was the only way he could maintain his composure. I maintained eye contact with Mom a great deal, smiling and nodding my head. But it really hurt to remain silent as she struggled trying to find answers that were nowhere to be found. Things only got more difficult as the session progressed, but I'll save that for another day.

The Diagnosis

July 17, 2007, was a big day: things were finally going to be out in the open. Mother, her husband, and I went to an appointment for her with a neuropsychiatrist. She specializes in treating Alzheimer's patients. She is very professional and businesslike. And she pulls no punches, so to speak.

I went to their home because Pop was having trouble getting Mom to agree to go to the doctor's appointment. She was extremely upset, so I went there instead of meeting them at the office. When I arrived, Mom was angry. She seemed to feel that we were in a conspiracy against her. I hugged her and asked her to get ready. She said she wasn't going anywhere, and I said we were going to the doctor. As she continued to refuse to go, she went about combing her hair, picking up her purse, and so on. She was so unhappy with us that she didn't care what clothes she wore. She said it was our idea and she didn't give a d---.

Through a Glass Darkly

Hindsight is 20/20, and yes, we can see clearly today; but ten years ago our vision was clouded. It seems we were missing many pieces of the puzzle. We were seeing "through a glass darkly"(1 Cor. 13:12). When I say "we," I am referring to my immediate family, as well as my four sisters, their children, and our stepfather. Mom has been diagnosed with Alzheimer's and vascular dementia. We saw many signs along the way, but nobody wanted to admit the truth. We chose to shrug off little memory slip-ups as just normal signs of aging.

Now, about ten years later, we are no longer able to remain in denial. Mom's condition has progressed to the point that a change is eminent, not just for her living arrangements, but also to ensure that her nutritional, safety, and hygiene needs are met. So, as we begin to walk through the next part of this journey, I want to share with others who may be coming along in the same paths through which we have already walked. Maybe the experiences of my family can be beneficial to someone else.

I will begin by telling of our first trip to the doctor which took place in July, 2007, and then progress to where we are today.