Showing posts with label living. Show all posts
Showing posts with label living. Show all posts

Tuesday, 8 May 2012

Dementia Care is not a 9-5 job!

Unfortunately for my Dad he did have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct.

By Ellen Belk
Alzheimer's Reading Room

This is a Call-to-Action to the myriad of ‘service providers’ that litter the landscape of Senior Care.

The operations, organizations and companies that cater to the care providers of the memory impaired.

Please keep in mind, that although your offices may shut down at 5pm each day and are closed on weekends, those of us who seek your help after hours are left to fend for ourselves in serious moments of crisis.

If you aren’t available, where are families to turn in their greatest moment of need?

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As an accomplished dementia care employee myself, I’ve personally guided families after regular business hours. I’ve greeted them at the door on a Sunday. I’ve held the hand of an anxious son, past 8pm on a Friday, when his father was moving in. I’ve answered my phone on holidays and weekends many times throughout my career. Professionally, I’ve made the conscious decision to be available to folks during their times of struggle.

Recently, my professional and personal worlds collided when I got the call from my 83 year old mother on a Sunday, that my dad had fallen and she was in the local Emergency room with him awaiting X-ray results. I, like so many other adult children of aging parents, am a long-distance care provider. I live in the South and my parents, in the Midwest.

On that Sunday, my dad awoke, like any other day. He dressed and had breakfast with my mom in the condo they share. Unfortunately he fell in the bathroom that day, sometime around Noon. Ten days prior to his fall, he’d visited his primary Doctor, where it was discovered that Dad had a UTI. Not uncommon for a man of 82 years. Although the Doctor had commented on my Dad’s noticeable weight loss, he prescribed a strong anti-biotic for the infection. In the days leading up to the fall, Dad had experienced nighttime hallucinations, which we now know may have been due to the medication.

Dad walked into the ER that Sunday with Mom and was able to fully explain to the hospital personnel what had happened. My parents were simply there as a precaution to make sure there were no hidden injuries, to be concerned about. As the hours dragged on, and they were still sitting in the waiting room, it became apparent that Dad would be held overnight in the hospital.

I immediately called my brother and sister, who live in the same state as my parents and alerted them of the situation. Because I’m familiar with how Hospitals treat those, who have hallucinations, I became anxious from long-distance with dread of what may happen if my Dad had one of those episodes overnight.

My brother and I spoke via phone as he drove to the hospital and I instructed him to find out if they ‘medically restrain’.

In an instant, I began a crash course with my siblings, who up until this incident were ignorant of the procedures and methods of an industry that isn’t equipped or trained to handle dementia-like behavior.

As a precaution, I called a well known company that provides companion services with the intention of hiring someone to stay with my dad overnight to ensure his safety. It was approximately 3 PM on that Sunday. The first company I contacted told me point blank that it was too short of notice for anyone from their office to assist. When I asked her if someone from another of their offices could help, she told me she wasn’t familiar with the area and I abruptly ended the call, as I quickly realized this was not going to be an easy task.

Through internet research, I found another office that served the area my parents were in, however was told again, it was too short of notice for them to be of any assistance. Realizing that industry professionals were not going to be our answer; my sister willingly agreed to hold vigil with Dad that night in the hospital. Because the X-rays had been negative, we all thought it would be a one night stay and he’d be home by late Monday.

Unfortunately for my Dad, he did indeed, have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct. Dad had a significant adverse reaction to that medication and by Tuesday, he was unable to speak coherently, walk or feed himself. I arrived at the hospital on Wednesday and he didn’t even recognize me.

I reached out to various Geriatric Care Management companies in search of a professional advocate who would assist my family, when I had to return to my home. Unfortunately, I had to make those calls, after 5 PM, as time becomes your enemy when you are sitting bedside with your loved one all day.

And again, I was hearing automatic answering responses instructing me to call back during ‘normal business hours’. Normal? There is no normal when you are in crisis and seeking help for a loved one.

Our journey still continues and throughout our two month journey, we’ve endured Doctor’s who couldn’t be reached because they were on vacation, another Geriatric Care Management company who couldn’t provide weekend coverage and a primary Doctor who was too busy with patients to return our calls.

Newsflash to those of you touting your ‘Senior Care services’, find a way to be available after hours and on weekends. Because the reality is; crisis doesn’t always occur Monday thru Friday between 9 AM and 5 PM.

Surely, there has to be an organization who will realize this phenomenon and become an industry leader in offering services when the others have gone home for the day.

Ellen Belk is President of Keep In Mind™ and creator of Memory Magz™. Since 2001, Belk has specialized in developing programming for the memory impaired. A mature musician concert band, an intergenerational Senior Prom and a Fine Art appreciation program are amongst her professional highlights. Memory Magz™ are ‘magazine style’ picture publications with full page vibrant images purposefully designed for people with cognitive decline and/or developmental disabilities. As a public speaker, Belk engages the audience with her inter-active style and witty story telling. www.keepinmindinc.com.



More Insight and Advice from the Alzheimer's Reading Room

Original content Ellen Belk, the Alzheimer's Reading Room

Friday, 4 May 2012

Biosynthetic Grape Derived Compound Prevents Progression of Alzheimer's

This group of researchers found that certain grape seeds extracts, comprised of a complex mixture of naturally occurring polyphenols, were capable of lessening cognitive deterioration and reducing brain neuropathology.

+Alzheimer's Reading Room

Mount Sinai School of Medicine researchers have succeeded in developing a biosynthetic polyphenol that improves cognitive function in mice with Alzheimer's disease (AD). The findings, published in a recent issue of the Journal of Neuroscience, provide insight in determining the feasibility of biosynthetic polyphenols as a possible therapy for AD in humans, a progressive neurodegenerative disease for which there is currently no cure.

Polyphenols, which occur naturally in grapes, fruits, and vegetables, have been shown to prevent the cognitive decline associated with AD in a mouse model, but the molecules are very complex and are extensively metabolized in the body.

This is the first study to determine which specific subfraction of these molecules penetrates the animal brain, and demonstrate that a drug compound similar to polyphenols can exert similar bioactivities.

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Biosynthetic grape-derived compound prevents progression of Alzheimer's disease in mice


A research group led by Giulio Maria Pasinetti, MD, PhD, Saunders Family Professor and Chair in Neurology at Mount Sinai School of Medicine, has been exploring the application of specific grape-derived polyphenols for the treatment of AD. Previously, this group found that certain grape-seeds extracts, comprised of a complex mixture of naturally occurring polyphenols, were capable of lessening cognitive deterioration and reducing brain neuropathology in an animal model of AD, but they did not know how to manipulate the natural extract into a pharmaceutical compound that could be used by the brain.
"My team, along with many members of the scientific community, did not know how we could harness the efficacy of naturally occurring polyphenols in food for treatment of Alzheimer's disease," Dr. Pasinetti said. "We were skeptical that these naturally occurring polyphenols would reach the brain because they are extensively metabolized following ingestion."
The researchers separated the natural occurring polyphenols from grapes, sorted them by size, and administered each for five months through drinking water to mice genetically altered to develop AD, after which they assessed brain neuropathology and cognitive function of the mice. They identified a specific grape polyphenol metabolite that was capable of selectively reaching and accumulating in the brain. This compound reduced the neuropathology of AD in the brain by preventing the accumulation of abnormal proteins in the brain, a hallmark of AD.

Dr. Pasinetti's team analyzed the structure of this polyphenol by nuclear magnetic resonance imaging and recreated it biosynthetically in the laboratory. Dr. Pasinetti and his collaborators discovered that the synthetic polyphenol generated in the laboratory also promoted plasticity and benefits in learning and memory functions in the brains of the mice.
"While this is an exciting development, we have a lot to discover and many years of testing before this agent can be considered in humans," said Dr. Pasinetti. "I look forward to further studying this compound to determine its feasibility as a treatment for Alzheimer's disease."
Dr. Pasinetti is currently exploring the possibility of delivering biosynthetic polyphenols nasally or subcutaneously, thereby preventing them from being metabolized in the liver.

Mount Sinai researchers are supported by a grant from the National Institutes of Health. Dr. Giulio Maria Pasinetti is a named inventor of a pending patent application filed by Mount Sinai School of Medicine (MSSM) related to the study of Alzheimer's disease. In the event the pending or issued patent is licensed, Dr. Pasinetti would be entitled to a share of any proceeds MSSM receives from the licensee.
___________________________
About The Mount Sinai Medical Center

The Mount Sinai Medical Center encompasses both The Mount Sinai Hospital and Mount Sinai School of Medicine. The Mount Sinai Hospital, founded in 1852, is a 1,171-bed tertiary- and quaternary-care teaching facility and one of the nation's oldest, largest and most-respected voluntary hospitals.

For more information, visit http://www.mountsinai.org.

More Insight and Advice from the Alzheimer's Reading Room


Original content Bob DeMarco, the Alzheimer's Reading Room

Saturday, 28 April 2012

Living with Childhood Alzheimer's

Is Cyclodextrin the answer?

Alzheimer's Reading Room

There are only 500 known cases world wide, 100 in the US. Slowly, these kids lose everything.

"All these little things that we take to function, you don't realize until they're taken away," says Laura.

The Hadley's decided they had to do something, so they started the Hadley hope fund - raising money for research. Recent scientific discoveries are giving them hope.

About a year ago the 14 and 11 year old were put on Cyclodextrin, an experimental drug that actually slows the disease.

Bryan states, "They seem to be holding their own, they're not degenerating any more."




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Original content Bob DeMarco, the Alzheimer's Reading Room

Thursday, 26 April 2012

The Aesthetic Life

I guess I've learned to pay attention to what my mom remembers. That helps me know what really matters to her.

By Claudia Marshall-Apers
Alzheimer's Reading Room

Did you ever wonder why the deeply forgetful can remember some recent events and future plans but not others? I wonder that all the time.

Why do some memories form while others fail? Hmmm.

When I was learning how to teach art to elementary school children, I had to learn how we learn, how we remember and how we know.

It turns out that we “know” in many more ways than we would expect.

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Art, for example, is a way of “knowing” the world – both making art and looking at art. We can “know” in many ways apart from reading, writing and talking. We also make stronger memories when two different areas of the brain are involved – words and music together for example. I for one can remember every word of every coffee commercial that was out when I was a child (“Chock full of nuts is that heavenly coffee”...). I found out about the importance of the aesthetic experience – something you experience with all of your senses and faculties and emotions make stronger memories with more connections in the brain.

I guess I knew all of this in theory but then one day, last Fall for the first time in her life, my mom, Pauline, at age 89, fed a horse out of her hand. This was over five months ago. She remembered it that day, the next day, and has talked about it consistently since. She even wrote about it in a letter to her grandson – how gentle the horse was and so nice and he could have bitten off my hand if he wanted to but he didn't.

So, apparently the deeply forgetful can be very rememberful when the conditions are right. They don't remember that they ate breakfast? So what. Maybe the fact that they ate breakfast isn't that important after all. It didn't have an impact. Maybe by forgetting certain things they are teaching us something – what really matters in life at the end of the day.

I guess I've learned to pay attention to what my mom remembers. That helps me know what really matters to her. I try to help her create new memories that can only be formed with all of her senses and emotions I try to help her live an Aesthetic Life.

Claudia Marshall-Apers is the full-time caregiver to her mom, Pauline, who is in the moderate to severe stages of Alzheimer's/dementia. Claudia is a transplant from New York where she was born and raised and now lives in the beautiful landscape of  Rio Rancho New Mexico with her husband and 18 and 21-year-old sons, when they are home, along with their dog Cinnamon. Claudia holds a Master's in Art Education and is currently working on a series of artwork about Alzheimer's/dementia.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Wednesday, 18 April 2012

Daily Physical Activity May Reduce Alzheimer’s Disease Risk at Any Age

The research found that people in the bottom 10 percent of daily physical activity were more than twice as likely (2.3 times) to develop Alzheimer’s disease as people in the top 10 percent of daily activity.

By Bob DeMarco
Alzheimer's Reading Room

Dotty at 89
She looks better now
doesn't she?
I read about the research below with great interest. Great interest for a simple reason. The first decision I ever made in regards to my mother and her condition was to take her into the gym. Into the gym for the first time in her life at the age of 87.

I used the words "in regards to my mother and her condition" because I made that decision before she was diagnosed with probable Alzheimer's disease. I made that decision while I was doing an enormous amount of research, up sometimes until 3 AM.

I made the decision based on the positive affects that exercise has on the brain even in people that are "old". There was very little research on Alzheimer's and exercise at the time, some, but not much.

I also made the decision to go into the gym because I already understood that I was going to need an enormous amount of energy to care for my mother, and I needed a way to reduce the stress that comes along with caregiving.

At the time my mother was getting up in the AM at 1:30 and 4:30. Every night. She would get up, open the door, take a few steps, look around, and then come back. Usually at 1:30 she would get something to eat. This also helps explain why I was up late doing research. I figured, I am getting up anyway.

I never stopped my mother, or tried to deter her from walking out the door. I did pay attention though, just in case she decided to take off. I can't tell you why I never stopped her, or lectured her. Good instincts I guess.

It took a few years, three I think, before I cured her of that problem. She no longer gets up in the middle of the night. Although, I suspect she might after I write these words. I am supertitious about what I say. Which also explain why in my business career I was very tight lipped.

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Daily Physical Activity May Reduce Alzheimer’s Disease Risk at Any Age

Daily physical activity may reduce the risk of Alzheimer’s disease and cognitive decline, even in people over the age of 80, according to a new study by neurological researchers from Rush University Medical Center that will be published in the online issue of Neurology, the medical journal of the American Academy of Neurology.

“The results of our study indicate that all physical activities including exercise as well as other activities such as cooking, washing the dishes, and cleaning are associated with a reduced risk of Alzheimer’s disease,” said Dr. Aron S. Buchman, lead author of the study and associate professor of neurological sciences at Rush. “These results provide support for efforts to encourage all types of physical activity even in very old adults who might not be able to participate in formal exercise, but can still benefit from a more active lifestyle.”


"This is the first study to use an objective measurement of physical activity in addition to self-reporting,” said Buchman. "This is important because people may not be able to remember the details correctly.”

To measure total daily exercise and non-exercise physical activity, researchers from Rush asked 716 older individuals without dementia with an average age of 82 to wear a device called an actigraph, which monitors activity, on their non-dominant wrist continuously for 10 days.

All exercise and non-exercise physical activity was recorded. Study participants also were given annual cognitive tests during this ongoing study to measure memory and thinking abilities. Participants also self-reported their physical and social activities.

Study participants were individuals from the Rush Memory and Aging Project, an ongoing, longitudinal community study of common chronic conditions of old age.

Over a mean of 3.5 years of follow-up, 71 participants developed Alzheimer’s disease.

The research found that people in the bottom 10 percent of daily physical activity were more than twice as likely (2.3 times) to develop Alzheimer’s disease as people in the top 10 percent of daily activity.

The study also showed that those individuals in the bottom 10 percent of intensity of physical activity were almost three times (2.8 times) as likely to develop Alzheimer’s disease as people in the top percent of the intensity of physical activity.

“Since the actigraph was attached to the wrist, activities like cooking, washing the dishes, playing cards and even moving a wheelchair with a person’s arms were beneficial,” said Buchman. “These are low-cost, easily accessible and side-effect free activities people can do at any age, including very old age, to possibly prevent Alzheimer’s.”

The number of Americans older than 65 years of age will double to 80 million by 2030.

“Our study shows that physical activity, which is an easily modifiable risk factor, is associated with cognitive decline and Alzheimer’s disease. This has important public health consequences,” said Buchman.

Co-authors of the study from Rush are Patricia Boyle, PhD; Li Yu, PhD; Dr. Raj C. Shah; Robert S. Wilson, PhD; and Dr. David A. Bennett.

The National Institutes of Health, National Institute on Aging, the Illinois Department of Public Health and the Robert C. Borwell Endowment Fund helped fund the study.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Tuesday, 17 April 2012

Grace Kearney Writes an Award Winning Essay About Alzheimer's

Through the Looking Glass: Understanding the World of the Alzheimer’s Patient

By Max Wallack
Alzheimer's Reading Room

Each year the Alzheimer’s Foundation of America offers several scholarships for graduating high school seniors. Scholarships are offered for both essay and video entries.

This year's winning entry was written by Grace Kearney from Baltimore, Maryland.

Please take the time to read this remarkable essay.

Congratulations Grace!


Through the Looking Glass: Understanding the World of the Alzheimer’s Patient

By Grace Kearney

The waiting room could belong to a dentist’s office. There are bright lights and comfortable chairs and plenty of People magazines. But the vacant expressions of those waiting makes it clear that they are not about to have their teeth checked. Standing inside the geriatric psychiatry clinic, I feel as if I have already entered something more personal than an internship. Before I can fully absorb the scene, a nurse calls me into her office. She is administering a diagnostic test to a new patient.

“Where are we today, Mr. Perkins?”*

“Appling, Georgia. I wouldn’t dream of leaving.”

“What day of the week is it?”

“Tuesday.”

“What day of the week was it yesterday?”

“Tuesday.”

The Red Queen’s words spring into my head. “Now here, we mostly have days and nights two or three at a time, and sometimes in the winter we take as many as five nights together - for warmth, you know.”** As an eight year old reading this passage from “Through the Looking Glass and What Alice Found There” for the thousandth time, I found myself laughing long before the punchline. Residing permanently on this side of the mirror, I failed to grasp the absurd logic of the Red Queen’s statement, and could only laugh at the suggestion of stacking days for warmth.

In a nurse’s office far from that childhood bedroom, I hear echoes of the Red Queen in Mr. Perkins’ words, but they are no longer humorous. For it is not a fictional character speaking; it is a person, one for whom multiple Tuesdays is reality. Like the guests at the Mad Hatter’s tea party, Mr. Perkins is trapped in time, trapped in an inner world that clashes with his surroundings, yet he is not aware of the dissonance.

Months of observing the same sad scene reveal the futility of trying to convince Alzheimer’s patients that they are wrong.

These patients are not waiting to be brought back to the real world; they are seeking someone who will validate their version of reality.

Gradually, I come to understand that the world inside each patient’s mind is as legitimate as the world inside mine—that our interior reality is the only one that matters. Perhaps there is an objective reality to which most of us subscribe, but the smaller details, the intricacies of the world around us, are to each person unique. My perception of reality, though unaffected by brain disease, is not universal. Acknowledging this, I am better able to accept and welcome the range of perspectives I will encounter in this clinic and beyond.

When Mr. Perkins returns to the clinic six months later, I do not attempt to bring him to Baltimore, but instead travel with him to Georgia. When he asks me to close the windows because “the flies are ruthless this time of year,” I comply, knowing that the flies are as real to him as the Baltimore heat is to me. In doing so, I accomplish what my eight-year-old self could not have imagined. I manage to join his tea party.
___

For the past three years, I have worked as a research assistant at Johns Hopkins Hospital in the Department of Geriatric Psychiatry. As part of the research practicum course at my high school, each student has the opportunity to find a mentor at a nearby research institute and complete an independent research project throughout their junior and senior years of high school. Though my research primarily concerns autism in older adults, I have had the chance to meet geriatric patients of all kinds.

Every Wednesday afternoon, I leave the hospital and go across the street to the outpatient clinic, where dementia patients are brought in by their caregivers to meet with a doctor and receive treatment. I have met with them, spoken with them, learned their stories, and told them mine, only to be unfamiliar to them the next week. Still, their presence in the clinic has made an impact on my understanding of Alzheimer’s disease, my attitude toward these patients and their families, and my plans for the future.

My interest in the aging mind springs from a childhood spent listening to stories of my father’s patients, who always seemed too old to cure but too alive to ignore. Though the majority of his patients were inflicted with Alzheimer’s or similar degenerative diseases, I would not realize this until the end of the story. The description of a particular patient’s personality and background always came first; their medical issues later, almost as a side note. I learned to consider patients as more than the sum of their parts, as people first and foremost.

My father is an end-of-life care physician, and unlike cancer specialists or brain surgeons, he treats problems that everyone will face someday, if we are lucky. No one can avoid growing older or watching as loved ones grow older, and seeing firsthand how painful the transition to old age can be, particularly for those inflicted with Alzheimer’s disease, has instilled in me a desire to help geriatric patients of my own one day.

Spending time in the geriatric psychiatry clinic has taught me lessons in life as well as medicine. The day I recognized an Alzheimer’s patient’s wife as the receptionist who had snapped at me earlier, I learned compassion. You never know what sort of pain a person is concealing behind their plastered smile. When I had a conversation with a man who needed several reminders to keep his shoes on and his shirt buttoned, I learned patience. Alzheimer’s patients may often seem as stubborn and confused as young children, but they prove invaluable sources of wisdom if you only pause to listen. But perhaps most importantly to a medical career, I learned that caring for those with Alzheimer’s is not about ridding them of their disease (such a thing is currently impossible) but helping them live in a way that is dignified and graceful until the very end.

Ask any child what a doctor does, and he or she will tell you that a doctor saves lives. To me, saving a life does not always mean finding a cure or even making a person live longer. It means allowing patients to live according to their own desires. It means placing yourself in the shoes of patients, and taking the time to learn about their family, their relationships and their past in order to figure out what those desires might be. It means opening your mind to the possibility that there are some things you will never understand, and accepting the fact that others do not see the world the way you do.

In the conversations that took place in that geriatric clinic each Wednesday, there was one phrase I heard more often than any other. When patients were asked for their most fervent desire, I heard again and again “I just want to go home.” This sentence contains what I think should be a doctor's main objective—to find that place where a patient can feel at home and do everything possible to help them get there. As I pursue a career in medicine, this is how I want to save lives.

*Name changed to protect privacy of individual.
** Carroll, Lewis. "Queen Alice." Through the looking-glass and what Alice found there. New York: Random House, 1946. 56.
--------------
You can read the essays of two more winners here.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.


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Original content Max Wallack, the Alzheimer's Reading Room

Monday, 16 April 2012

Memory Moments Music Therapy - Lakeview Ranch

Music Therapy is becoming a powerful tool in the treatment of Alzheimer's and Dementia.

By Bob DeMarco
Alzheimer's Reading Room

If you watch around the watch around the 2 minute mark (2:15), you might get an interesting idea for a game you can play. Don't have much to say, or know what to talk about? Try singing.




If you don't see the video go here.

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Creating Moments of Joy: A Journal for Caregivers, Fourth Edition
 

The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease


Original content Bob DeMarco, the Alzheimer's Reading Room

Problem - Wearing the Same Clothes Day after Day

Carole Larkin suggests some potential solutions to this problem which happens with Alzheimer's patients.


By Carole B. Larkin
Alzheimer's Reading Room

A reader is looking for solutions to a problem.

Dear Carole,

I live in Vermont and am the oldest child of my 88 year old mother with AD and an 87 year old father who is her primary caregiver. They live independently near my brother who is very available and helpful but not always that insightful (you know this story).

I try to visit them every 3-4 months to check in and make sure they are doing OK and deal with all the little issues that seem to pile up.

They are refusing outside assistance although I continue to recommend getting even minimal services in the home (housekeeping, etc) and hiring a GCM is out of the question. They are very private people who are determined to take care of themselves.

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I plan to visit in May and the biggest issue for my dad right now is getting my mom to buy new clothes.My mother was always immaculate and somewhat of a clothes horse but now she refuses to buy anything new. Her clothes are stained, worn and not the most appropriate at this stage of her life.

During my last visit I took her out and had a personal shopper do most of the leg work but when it came time to try the new outfits on, mom balked and said she really liked what she already had and didn't see the point of getting new. "Whom do I need to impress?" "I hate to disappoint you, sweetie, but I'm just fine so can we go home now.”

At this point I'd be grateful to do some online shopping for basic (well constructed) clothing that is easy to wear (elastic waistbands on well tailored slacks) and easy to maintain.

Any thoughts on how to get some of this accomplished before I fly to TX next month?

I'd prefer just spending time visiting and "being with" my mother and not stressing her out with putting demands on her.

Thank you for your time and consideration of my request. By the way, I'm very impressed with your sensitive and informative posts on the Alzheimer's Reading Room.

Regards,
Susie
Note: Real names and locations have been removed in the above for privacy purposes.

Carole's response.

Dear Susie,

Thank you for your kind recognition of my input on the Alzheimer’s Reading Room. It really makes my day to know that what I write gets read, and can help people. My mom had it, and I do this to honor her legacy as well, so she’s smiling too. Thanks for that.

Now on to your question. It’s probably too difficult for your mom to make choices from a number of clothing options anymore. That’s why she wears the same things over and over. It’s not stressful to her. Also, chances are that by this time in the disease, that she literally can’t see the stains, etc…. Plus, I’m guessing your dad is not the world’s best laundress. So, these are my thoughts:

Find out from your dad the outfit or 2 outfits that your mother puts on the most. The color, the style, the size, the manufacturer. Have him take a picture of them if he can and send it to you.
  • Buy 5 identical outfits as closely matching the current outfits as you can.
  • Bring them with you but don’t show them to her.
  • When she is at the hairdresser or elsewhere out of the house, replace the old, dirty clothes with the new ones in her closet.
  • Take the old ones out of the house. Donate them or throw them in a dumpster somewhere if they are that bad.
  • Say nothing- see if mom notices.
  • If and when she does, immediately apologize to her saying that you spilt something (insert what makes sense to you) on her clothes and accidently ruined them. You are so, so, sorry- with the look of pain and guilt on your face. You found some clothes almost like them in the back of her closet or in another closet (whatever makes more sense), and thought she could use them until you buy her new clothes. Please forgive me mom, I feel so bad!
  • That should take care of it. If not, contact me and we can try something else.

Every night thereafter, dad sneaks in after she is asleep, and takes the days clothing and puts it in a (laundry) bag somewhere in the house where mom doesn’t go or won’t see it. (behind something else?)

 Do one of two things: Have a dry cleaner in the area come pick it up say twice a week, clean it, with some of your fathers clothes if necessary, and drop it off (in boxes if necessary) to somewhere in the house she doesn’t go (the garage?) make these arrangements with the cleaning company. Most will do this, for an extra charge of course.

Or make a “gift” of a housekeeper to come over for a few hours twice a week to do the laundry, light cleaning, etc… It’s your gift to them- you are paying the person. You want to do this for them, you can’t help in any other way.

Dad, please accept the gift for my (your) sake!

It will make me feel better, like I’m contributing. Really work him over! And I’ve already found just the perfect person! Make it like it’s a done deal.

If it were me, instead of hiring just a cleaning lady, I’d go to one of the home care agencies and hire a CNA (certified nurse’s aide). She can and will do cleaning and laundry, but can also check to see if mom and dad are taking their medicine correctly, take their blood pressure and temp if they look sick, etc…

When you contact the home care agency just tell them that your parents are resisting, but would easier accept someone who would be called their cleaning lady, at least in the beginning.

The company will understand completely- trust me on this one. The company will come over to do an assessment, just tell your parents it’s part of the cleaning service, to make sure that they will get a person they will like!

You’ll need for the person to come say for 4 hours a day, 2 days a week (at least to start). 4 hours is the normal minimum hours a day those companies need to be able to send someone. Perhaps she can make lunch for them too!

Let me know how that works out.

Warm regards,

Carole Larkin

Carole Larkin MA,CMC,CAEd,QDCS,EICS,
is a Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC, is located in Dallas, TX.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Sunday, 15 April 2012

BU Researchers Identify Genes that Influence Hippocampal Volume

The hippocampus shrinks before and during the progression of Alzheimer's disease, but other factors, such as vascular risk factors and normal aging, also lead to the decrease in size.

Alzheimer's Reading Room

Sudha Seshadri
An international team of researchers led by the Boston University School of Medicine (BUSM) has identified four loci that appear to be associated with decreasing the volume of the hippocampus.

The hippocampus is the region of the brain that plays an important role in the formation of specific, new memories, which is an ability that patients with Alzheimer's disease lose.

The findings may have broad implications in determining how age, Alzheimer's disease and other diseases impact the function and integrity of the hippocampus.

Sudha Seshadri, MD, professor of neurology at BUSM, is a senior author of the study, which will be published online in Nature Genetics.

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Previous research has shown that the hippocampus is one of the brain regions involved with short and long-term memory processes and that it shrinks with age. It also is one of the first regions to exhibit damage from Alzheimer's disease, which can cause memory problems and disorientation.
"One of the problems with studying the genetics of a disease like Alzheimer's, which becomes symptomatic later in life, is that many people die of other causes before they reach the age at which they might have manifested the clinical dementia associated with the disease," said Seshadri. "To get around this issue, we have been studying the genetics of traits that we know are associated with a high future risk of Alzheimer's disease but that can be measured in everyone, often 10 to 20 years before the age when most persons develop clinical symptoms."
The potential genetic traits are called endophenotypes, and hippocampal volume is one such trait. The hippocampus shrinks before and during the progression of Alzheimer's disease, but other factors, such as vascular risk factors and normal aging, also lead to the decrease in size.

"Our research team wanted to pinpoint the genetic causes of changes in the hippocampal volume in a sample of apparently normal older persons," said Seshadri.

The Cohorts for Heart and Aging Research in Genomic Epidemiology (CHARGE) Consortium allowed the researchers to gather data on hippocampal volume from 9,232 people who did not have dementia. They identified four genetic loci, including seven genes in or near these loci that appear to determine hippocampal volume.

The results show that if one of the genes is altered, the hippocampus is, on average, the same size as that of a person four to five years older. These results were replicated in two large European samples that included a mixed-age sample that included some participants with cognitive impairment.

"The findings indicate that these loci may have broad implications for determining the integrity of the hippocampus across a range of ages and cognitive capacities," said Seshadri. One of the genes identified by the researchers was also shown to play a role in memory performance in a different data sample.

The identified genetic associations indicate that certain genes could influence cell death by apoptosis, brain development and neuronal movement during brain development, and oxidative stress. Additionally, the researchers found that the genes play a role in ubiquitination, which is a process by which damaged proteins are removed, whereas other genes code for enzymes targeted by new diabetes medications.

"Future studies need to further explore these genetic regions in order to better understand the role of these genes in determining hippocampal volume," added Seshadri.

One of the largest cohorts involved in the study was the Framingham Heart Study cohort, affiliated with BUSM. Seshadri is a Senior Investigator at the Framingham Heart Study.

"Such important research would not be possible without the ongoing dedication of the Framingham study participants, which now span three generations and six decades," said Seshadri.
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This study was funded primarily through the National Institute on Aging.

Source Euereka Alert and Boston University School of Medicine.


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Original content Bob DeMarco, the Alzheimer's Reading Room

Hope and the "Seeing Alzheimer’s Differently Symposium"

Hope is a positive emotional state that is the opposite of despair. Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances. Hope provides us with the psychological and emotion energy to accomplish what those without hope often consider the impossible.


By Bob DeMarco
Alzheimer's Reading Room

On April 25, I 'll be heading up to the Michael Schimmel Center for the Arts at Pace University to speak.

I'll be holding a workshop at 3:30 PM with the general topic, “Communicating in Alzheimer’s World: The Path from Burden to Joy”.

I'll reveal for the first time some of the things that Dotty taught me.

If you are in the neighborhood, come on by and participate along with me. It would be nice to have someone with me that made the big giant step to the left and walked right into Alzheimer's World.

At 7 PM, I'll be one of several speakers at the Seeing Alzheimer’s Differently Symposium. Don't be late, I am up first at 7 PM. I'll talk about how I rewired my brain. And, if I can get some tech help, I'll show Dotty and Harvey singing. Go here for the details.

Now to the purpose of this article.

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The Alzheimer's Society just launched a new fund raising campaign called Hope. Dig it, no terror, no fear -- Hope.

See that wooden brick up at the top with the word Hope. Well these bricks are available in stores in the U.K.. You pick one up and when you check out, they scan the bar code on the brick and you donate £1 ($1.58) to the Alzheimer's Society.

Ingenious. How could anyone in the Alzheimer's community or in the extended family resist? I am happy just thinking about it.

In fact, I want one of those bricks. Anybody know who I should contact? I want a picture or video of Dotty holding one of those wooden bricks.

By the way, you don't get to keep the brick. After you donate they put it back on the shelf so someone else can donate. I still want one.

I wonder what it would say if the Alzheimer's Association put wooden bricks on store shelves in the U.S.

Nobody survives? If you want to reduce the burden that comes along with a diagnosis of Alzheimer's, call 1-800-BobbyD?

Check out this quote.

"We’re always looking for innovative and quirky new ways to raise money and the Hope initiative does just that," said Alzheimer’s Society community fundraising manager, Jennifer Moseley. "The great thing about this scheme is that shoppers can choose to donate a small but vital amount of money in an easy way, simply by taking the block with the rest of their groceries to be scanned at the check-out."

I think they will raise more money then they ever imagined with this "scheme". The word "scheme" has a very different meaning over here in the U.S. So does block.

This reminded me of the article, Brothers Presents Check for $187,760 to Alzheimer's Tennessee. Believe it or not, the $187,760 was raised one dollar at a time in 18 Arby's stores owned by brothers Tom Johnson, III, John Johnson, and their families. Go read about it.

You know what, Dotty and I are real schemers, we have to come up with an idea of our own.


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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,461 articles with more than 397,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Thursday, 12 April 2012

Won't Come Out of the Bathroom, Won't Use the Bathroom

When I couldn't get Dotty to go to the bathroom I thought about tying a potato chip on a string and dangling it in front of her face to entice her to follow me to the bathroom.

By Bob DeMarco
Alzheimer's Reading Room

I didn't do that, but the thought did cross my mind. In order to encourage a person with dementia to do what you would like to them to do you have to find the "hook".

In our case, I didn't tie a potato chip on a string. Instead, I said come on lets take a pee, and then we will get some potato chips.

Key word, Lets. As in let us. Key word, we.

Not you need. Or, I want you too.

Instead, we will and then the "hook". So we weren't really going to the bathroom, we were going to get something to eat -- the beloved potato chip in this case.

I think what you say has to be positive, not negative.

I think it needs to lead to an action that is wanted, desired, or fun. Baby dolls, or repeat parrots can help. For example, I might get Harvey to repeat, Dotty come out here; or, Dotty drink your juice (as in prune juice, I jettisoned the word prune). It works.

We have two readers seeking advice and insight under the article -- Alzheimer's Care and the 90 Minute Pee Pee.

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Reader Walkyrie wrote and asked:
We have the opposite issue with my grandmother. She's 86 and at the moderate stage and she goes to the bathroom all the time and stays there for hours if allowed. I'm not exaggerating. We try to coax her to come out by saying things like "you are going to get cold in there and then catch a cold", (which is something she always believed in and used to tell us all as children), she will sometimes react positively to this and come out but more often than not, (and especially lately), she gets angry and tells us not to rush her.

Same thing happens when we take her out, she just wants to go to the bathroom and spends 30 minutes or more in there if we let her.

We have talked to her neurologist and he said to find other activities for her to do during the day. And we have. We have tried many things, like making bead necklaces for the kids, painting, even some light house chores like folding laundry, since she was always a housewife and loved doing her chores around the house. These things seem to work for a a little while and then back to the bathroom we go!

As of now no UTI, and we just don't know what else to do to keep her out of the bathroom. Oh and this goes on all day and night. Bobby, we have tried all your advice except getting a "Harvey".

Does anybody have any suggestions on how to help her? I don't believe my grandma is the only person with AD who is doing this or has a similar complex.

Arnie K wrote and asked:
My mother has a different "pee pee" problem. She refuses to use any bathroom other than her own even if they are immaculate.

So, if we're scheduled to go to the doctor or her day group, she refuses to drink ahead of time to avoid having to use a strange bathroom. Although I try to pump her full of liquids when she returns home, I remain concerned about the possibililty of dehydration.

Her doctor recommends that she drink more. Does anyone have any thoughts on how I can overcome mom's resistance to using bathrooms other than her own?

Comments, insight and advice are welcomed. Use the Add New Comment box below this article.


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Original content Bob DeMarco, the Alzheimer's Reading Room