Signs of Middle Stage dementia

Why does Mom with Alzheimer’s Make-up Stories?

Why does Mom make-up stories?

…or was Mom’s Vacation really an International Mexican Fiesta?

We live in the Desert Southwest near the Mexico border, so Cinco de Mayo and accompanying celebrations are nothing new to us during the Month of May. A few years ago it was an exceptionally warm summer and everyone looked forward to all the festivities as the month of May approached. Soon enough it would be time to enjoy Mariachi bands and dancers with their wide-brimmed, black sombreros and festive attire. A general feeling of Fiesta stirred in the air.

Cinco de Mayo meant fun traditions from Mexico for all of us. But this year, Mom had a problem. Generous adult-children had pitched-in and purchased the home across the street from Mom for their own newly-widowed mother. Now, the two elderly women were struggling to form a friendship. Often, as I arrived from across town, I’d see the two grandmothers standing in the middle of the lane, their conversations openly animated. Mom and Maria, talking with their hands and bobbing their heads in agreement. I could only shake my head.

Though Mom had yet to be diagnosed with Alzheimer’s, her reliance on me had begun to escalate and I’d noticed changes in her personality. Although she had several friends in the area, I worried when she was alone because I was an hour away even in light traffic. So I was delighted that these two elderly women were forging ahead with a friendship despite a major complication. Maria didn’t speak English, and Mom didn’t speak Spanish.

Despite the language barrier, Mom always came away from visits with Maria with information about her friend’s family. How many children and grandchildren she had, along with their ages and birth dates.

That they could communicate at all amazed me, but they seemed happy to share what they could. Both Mom and Maria had vegetable gardens so they also shared seeds, sprouts, and bragging rights for the tallest tomato plant. Mom asked me to pick-up a Spanish Dictionary since they were both determined to learn the others language. A true friendship, I surmised.

I made a mental note to get better acquainted with Maria’s grown children. I’d nodded and waved as Maria’s children arrived and departed her driveway across the street. But I assumed their English was little better than my Spanish so I hadn’t made a real attempt to be cordial.

Until this day! I just arrived at Mom’s house and I was furious.

I was so angry I could hardly speak as Mom related her experience of the previous day. Mom told me that Maria’s son had picked her up and taken Mom to Mexico to join Maria’s family in the celebration of Cinco de Mayo.

“I can’t believe it,” I nearly shouted at Mom. “That’s a foreign country! You left the United States, Mom. You entered a foreign country with total strangers!”

“He isn’t a stranger–” Mom was adamant. “Maria sent him to get me. He asked if I wanted to celebrate Cinco de Mayo with them for the day, and I said, yes.”

Clearly, Mom had no concept that she had left her home country and entered another, I knew that. Maria and her son knew that. But I couldn’t believe that Mom understood what she’d done. Maria’s family should have known better. As I turned and stormed for the front door–a knock interrupted my charge for Maria’s house.

Maria’s teenage granddaughter stood in front of me with a large baking dish covered in aluminum foil. “My Nana sent tamales for you, too.” She smiled as she pushed a foil covered baking-dish toward me.

“You speak English?” I felt foolish as soon as I’d asked the question. Of course she spoke English. She attended school in the United States.

Maria’s granddaughter smiled and nodded, insisting I take the steaming baking dish while I shook my head. I was still angry and needed to speak to her grandmother right away.

“Yes, yes. My dad brought Tamales for your Mom yesterday, but we finished the chili ones today and Conchas too. My Nana wanted you and your mother to have both.”

“But–“ my thoughts rushed ahead. “Your dad…uh…Maria’s son brought tamales for Mom yesterday?” I took a deep breath and peeked beneath the foiled pan, green chili tamales and Mexican Sweet bread. “You didn’t go to Mexico for Cinco de Mayo?” –I was almost afraid to know the answer to that question.

“Oh no,” Maria’s granddaughter answered and shook her head. “We never go there anymore. All our family is here now.”

I nodded and held my breath as she spoke. Then, remembering Mom’s long and detailed story of travelling to Mexico for a special holiday fiesta, I breathed a sigh of relief.

When Mom and I were alone, I asked her again about the story she had told me– and compared it to the knowledge I’d gotten from Maria’s daughter. Mom feigned forgetfulness and supposed she hadn’t gone to Mexico at all.

It would be several years before Mom was diagnosed with Alzheimer’s and I finally, truly understood that trip to Mexico as a figment of her imagination. But by then, I’d heard many more stories about Mom’s travels to distant lands and faraway places.

As the Alzheimer’s patient’s memory fades, I believe they have blank spots that need to be filled. And the better the imagination, the greater the stories that fill in the blanks. My Mom had a great imagination!

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Sundowning, Sundowners and Night Terrors — Are they all the same thing

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Sundowning Sundowners Night Terrors

Are they all the same

I recently spoke with a friend diagnosed with Early On-set Alzheimer’s. He described new symptoms that have begun to plague him. “Night Terrors” was the best he could manage to describe his fright-filled nights. At least, for a couple hours each night, as he sleeps, he is attacked by unbelievable terrors. Similar to a nightmare, he says, but profoundly more frightening, leaving him fearful to fall asleep at all.

I related my Mom’s experience with Sundowning–as told in this article, “What causes Sundowners and Sleepless Nights.” But my friend said it wasn’t exactly the same for him.

From the people I’ve spoken to, Sundowning (sundowners) is suffered differently by each Alzheimer’s patient. Some Alzheimer’s and Dementia sufferers have no Sundowner or Sundowning symptoms at all. While others suffer a variance on the same theme: “Sleepless Nights.” Some sleep fit-fully, some cry or moan, some wander or roam the house, while others, such as my friend, have horrible terrors that keep them awake for hours.

How ever the symptoms present themselves, it’s an odd behavior and, as far as I’ve been able to discover, the experts have little information about Sundowning (Sundowners), it’s cause or symptoms.

I did learn from this friend that his own cure for the night terrors has a common thread with my Mom’s eventual remedy. My friend found that by wearing head-phones tuned to his favorite music on the radio, lulled him to a peaceful sleep and often allowed him to awake in the morning feeling rested and without memory of any night terrors.

My Mom always wanted to be left alone and would not allow me to soothe her. I would try to hold her hand and offer consolation but she did not want it. She would sit on the side of the bed and rock herself, humming quietly, as though lulling a baby to sleep. And most nights it worked for her.

I wish I had been aware of my friend’s idea back then. My mom loved gentle, soft music and would have been happy to try his idea with head phones and a melody to cure her sorrowful nights.
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If your loved one suffers from Sundowners or Night Terrors or becomes agitated or distraught during the day or night, soft music is often helpful. It seems to calm and relax them, especially if they are already a music lover. I have learned from others, though, that even patients who didn’t care for music before they had Alzheimer’s or Dementia have become converts to soft music after their illness.

My Mom needed a hearing aid but refused to wear it due to all the “noise in her head,” she called it. But she loved music and a soft tune from her head-phones. So if you’re looking for a calming affect for your loved one, don’t forget to try head-phones and soft music at bed time too..

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Alzheimer’s and Dementia and Anesthesia –What causes the severe Confusion

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Alzheimer’s Dementia and Anesthesia

When my Mom was hospitalized for tests due to shortness of breath and other symptoms of pneumonia, she was totally confused the entire time she was in the hospital.

She had been to this same hospital many times for tests and such, but had never needed an overnight stay. This time she was hospitalized for a week and I was shocked at how confused she eventually became by the time we took her home.

Mom thought she was still at my house–where she’d lived for more than a year. So she told everyone who who came to visit at the hospital that ‘it was a good thing my house was so large, because my friends had partied all night long making a terrible raucous and keeping her awake for long hours.’

During waking hours we were on the verge of tying her to the bed. She was determined to get up and cook food for all my friends and house guests who kept walking around hungry. She could hardly believe I was such a poor hostess to all these people coming in and out of her room.

Mom had not received any type of anesthesia, so I was puzzled by her much worsened state of confusion. I’d known other Alzheimer’s patients who’d had anesthesia administered and then appeared to regress afterward. Frankly, I always thought it was some side-effect of the medication on an already damaged brain. In fact, I still believe that to be the case in some instances. But, from what I’ve read–much research on this theory has not proven it to be true.

And, after Mom’s behavior (without anesthesia) I must admit, I’ve been double-guessing a few of my own theories on the subject. Nevertheless, my Mom’s behavior worsened substantially after that hospitalization, though she did return to her previous stage when we finally got home. And, of course, any memory of the hospital evaporated as soon as Mom was back in her own room.

Besides the accumulation of tangles and plaques, (clumps of protein called beta-amyloid, which begin accumulating in the front of the brain and gradually spread to other parts) other theories about Alzheimer’s damage to the brain include inflammation, mini strokes, free radicals and glucose deficit, and more. We aren’t even sure when Alzheimer’s actually starts in the brain. Right now, it is believed that it may start many years before we actually see symptoms.

So today, there’s no clear answer about what causes the severe confusion of a Hospital Stay or Anesthesia on the Alzheimer’s or Dementia Patient. But it does happen, as all of us who’ve had a loved one suffer through it can verify. I wonder, now, if it isn’t actually an accumulation of stimuli, too many different rooms, people, things, to shock the brain of a person who’s memory is already pressed to remember their own small world.

The only thing that appears to help is to keep the patient calm and the environment as quiet and unaffected as possible. No easy task, I know, in a hospital.
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Some of our loved ones enjoy music, and that makes it easier to calm them. A few minutes of gentle music can often calm the angriest mood — There are many soft music CD’s that are perfect to calm their nerves. Plus, they may have their own favorite music that works just as well. Don’t forget the salving calm of Music!

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If they are accustom to wearing a headset–all the better. They can shut out a noisy room and enjoy a few minutes of peace and calm–

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Are Reminder Notes Enough for the Person with Alzheimer’s who Lives Alone?

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Are reminder notes enough to let the person with dementia live alone or drive a car

Are reminder notes enough so that if you knew you were going to lose your car keys tomorrow, you could put them in a “special” place tonight and prevent their loss altogether?

I have a friend, recently diagnosed with Alzheimer’s, who has been telling me about just such a plan she has put into action to save her memory. Every day she writes notes about “forgetting”– so she won’t forget things tomorrow. Post-it notes paper her walls, doors, fridge, calendar and table-top.

Louise, in the early stages of Alzheimer’s, lives alone and is fairing well enough to retain her driving privileges. Her neighborhood shopping center is only a few blocks away so she manages quite well driving that short distance. At least, that’s what she tells me.

Louise plans ahead every evening, and writes notes about all the things she may forget tomorrow. Her own way of postponing the “forgetting” of Alzheimer’s. It sounds like a good idea to me and I’m thinking–“what could it hurt?”

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Actually, Louise had handled Alzheimer’s much better than I thought she would. And I readily agreed to join her for a quick trip to the corner grocer. As we settled into the car, I noticed that she was struggling a little more than usual with the gear shift, but I stayed silent and allowed her to handle it. Some issues had nothing to do with memory, I reminded myself. And I shouldn’t be a pest, always trying to take care of her.

As Louise worked with the stubborn gear shift, I noticed the collection of Post-it notes along the dash of her car. ‘Louise, saving her memory again,’ I smiled. Then I felt compelled to ask about one peculiar “post-it note” taped to the dash. “What’s this, Louise?” I asked and pointed to the words in Bold red letters,”Turn Key.”

Louise had begun to perspire in her struggle with the gear shift, unable to move it into Drive. When she glanced where my finger pointed, she fairly shouted. “Oh my goodness! How could I forget?” She reached across and grabbed my hand. “Thank you, thank you.” Then she turned the key and started the car and the gear shift slid smoothly into Drive.

I was stunned. As Louise would tell me later, many weeks earlier she had tried to drive her car but could not get it to move. After many attempts in a single day, she finally remembered. She needed to turn the key to start the car. To be certain it never happened again, she taped the Post-it note to the dash. TURN KEY to start the car before attempting to drive it.

Louise had a good idea. The post-it notes are helpful– to a point.
They are not helpful for major things such as driving a car, operating machinery or a sewing machine, babysitting young children, using weapons of any kind.

The problem with Louise’s theory is–

She forgot the car had to be started by turning the key before it would GO
She forgot there was a note telling her how to start the car
She thought something was wrong with the gear shift, though there is much more to driving a car than the gear shift
What if during her next drive, she forgets what a red-light means, or a stop sign, or yield for children, or school crossing, or railroad crossing
What if she knows what a Stop sign means, but doesn’t remember how you stop a car

The “what-if’s” are endless. Where Alzheimer’s is concerned, there is no way to plan ahead, or know what you will forget tomorrow, or an hour from now, or a minute from now. There is no sequence to the forgetting that can be planned for or adjusted to ahead of time. My Mom’s home was covered with post-it notes but she never remembered to read them.

Reminder notes have their place, but they can not be used to drive a car, or operate machinery, or use a weapon, or take medication, or babysit young children, or make doctor’s appointments– Family members, Other loved ones or Care-givers must take the responsibility for the person with Alzheimer’s or Dementia when it comes to life and death decisions.

Reminder notes are not enough to make major life decisions.

Here are a few items that may help if you are caring for an elderly loved one!

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10 Ways to Avoid Agitation and Aggression

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Avoid Agitation and Aggression

The person with Alzheimer’s often appears to be stubborn, obstinate, argumentative, aggressive and downright mean at times.

I say “appears to be,” because in reality they are none of those things. Someone who has dementia is someone with a brain injury and damage to the brain prevents him from reacting in a normal way. Instead of doing as you might suggest, he may lose his temper— whether it’s time to eat, or shower, get dressed, or go to bed. The person with Alzheimer’s dementia can become disagreeable.

What we often forget, is this—the person with Alzheimer’s has a brain altering disease. He can not control his emotions or reactions to them.

Healthy people can overreact, too, especially when bombarded with more things than they can handle at one time. For the healthy person, dealing with daily issues, means repeating steps that we do every day till they become second nature; brushing our teeth, combing our hair, adjusting the water temperature for a shower, dressing and undressing. We’ve done it everyday for years, and do it now without giving it a second thought.

The person with Alzheimer’s wakes up to a brand new world–every day. He doesn’t remember what he did or learned last month, or last week, or yesterday, or this morning, or an hour ago. So when you ask him to take a shower he is bombarded with more things than he can handle at one time; where is the bathroom, how does he set the water, where are the towels, where are his clothes, when he slips into a shirt–how does he fasten buttons or tie a shoe or who will be waiting in the other room when he finally does get dressed? Most important of all, they are thinking —Where am I anyway?

You need only to simplify things for them. Slow things down, slow the pace to a level that your loved one can handle. By simplifying his/her life, making their life less stressful and erratic and contentious, there will be fewer flare ups of aggressive behavior. Speak slowly, and don’t ask him/her to do more than they can handle.

When my mom needed a shower; I set the water to running, adjusted the temperature, folded her clothes neatly on a stool in the bathroom (pull-over shirts and pull-up pants are easiest for them to dress themselves), laid out a towel, wash rag, hand soap and shampoo (in plain sight), her toothbrush (labeled) and toothpaste were on the sink. Her hairbrush (labeled) and comb were on the vanity. Before I learned my lesson and found a way to be agreeable and help my mother, she would bring all the tooth brushes to me every single morning to ask which one was hers. Remove that stress from their lives, label their items with name tags so they don’t have to ask.

Here are a few other things that will create a more stress-free environment for you and the person with Alzheimer’s–

Simplify their chores; select what they will wear, choose what they will eat, but allow them the dignity of choice if they make a request–they aren’t children
Don’t ask them to do things they can no longer manage, don’t insist that they remember or should remember–Accept that THEY DON’T REMEMBER
Don’t rush them but allow a slower pace for daily chores and general living
Don’t crowd them with lots of people (visitors), loud noises, family feuding, etc.; the more activity around them–the more stress they feel
Don’t treat them like children, giving orders all the time–instead give choices
Leave things in familiar places, keep routines constant and familiar
Simplify instructions; give them less to think about and remember, one-step instructions
Don’t allow them to become overly tired, or rushed
Don’t make them feel inadequate, or stupid, or foolish; if he can’t tie his shoes, buy slip-on shoes
Minimize the number of things they need to remember; lay out their clothes every morning, prepare their shower; when serving meals provide appropriate utensils, fork, spoon

I found that keeping a journal helped me to stay calm in those early days of learning about Alzheimer’s when my own mom was aggressive and angry most of the time. Often, after Mom and I had an angry argument, I could skim back over my own words in my journal and find a solution I hadn’t thought of earlier. A journal is a good way to let off steam too. I could be totally upset and angry, but after putting pen to paper for a half hour, it didn’t seem quite so bad after all.

The book “The 36 Hour Day,” written particularly with the caregiver in mind, suggests that if you find that the patient’s Catastrophic reactions are occurring more frequently and you are reacting with anger and frustration–this may be a warning that you are over-tired.

Don’t forget to take care of yourself, too. It is essential that you have time away from all the duties of caregiving; make the effort to get some time off for yourself on a regular basis.
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