Friday, December 11, 2009

An Unlikely Tool Finding New Uses

The Nintendo Wii gaming system is being used successfully as therapy for individual's with Alzheimer's. Many Senior Centers and assisted living centers. The Wii helps with movement and moderate fitness as well as social interaction. The Gaming device is even being used in conjunction with traditional rehab to encourage people to continue working when they return home.

Related Links:

Wii Speeds Up the Rehab Process
http://www.usatoday.com/tech/gaming/2007-07-24-wii-therapy_N.htm

Wii Therapy for Patients With Alzheimer's Disease http://wiihabtherapy.blogspot.com/2008/07/wii-therapy-for-patients-with.html

Nintendo a Useful Tool for Fighting Alzheimer's and Caregiver Stress
http://www.alzheimersreadingroom.com/2008/12/nintendo-wii-useful-tool-for-fighting.html

Give the Gift of Music

Looking for gifts for your loved one that suffers from Alzheimer's? Here are some ideas. Music from their youth, you can obtain CDs and copies of the lyrics (so family members and caregivers can learn the songs)from many places. A few examples:

Enhanced Moments Website
http://enhancedmoments.com/catalog/.

The Alzheimer's Store
http://alzstore.com/ They are also on Facebook.

Healing Music Enterprises
http://healingmusicenterprises.com

Research shows that Music Therapy benefits individuals with AD, especially helps decrease aggressive behavior and improves mood. The benefits of music also helps with communication. Many caregivers have been able to improve the mood of someone by singing a favorite song.

Related Links:
Singing For the Brain About the BBC "Alzheimer's the Musical"
Reaching People with Alzheimer's through Music http://www.caregiver.com/channels/alz/articles/reaching_alzheimers_through_music.htm

The Impact of Music Therapy on Alzheimer's Disease Patients
http://faculty.uccb.ns.ca/gcarre/courses/health/music.htm

Wednesday, December 2, 2009

Alzheimer's Vaccine Candidate Entering Phase II Testing

In 1998 I attended an Alzheimer's Conference and spoke with a visiting scientist who told me that they were working on a vaccine in Ireland and at that time it looked very promising. He thought it might be available around 2002. I waited hopefully for any news about a break through.

Yesterday I read in Medical News Today about a new study. The headline read: AFFiRiS AG: Interim Analysis Of Clinical Phase I Data Triggered Decision To Move Alzheimer's Vaccine Candidate AD02 Into Clinical Phase II Testing.

The data from Phase I testing looks very promising and they have decided to pursue the second phase of testing. Can you hear my shouts of encouragement and hope!!!!

Tuesday, December 1, 2009

In Search of Memories

Katie's Literature Lounge and Elizabeth's Children's Book Blog both blogged about picture books that help families cope and understand Alzheimer's. The books they reviewed emphasized family love and respect. Both sites do a great job of reviewing the books.

Here is a short list of picture books that delves into Alzheimer's and how it affects families. Today picture books are not just for the very young crowd. They are being used by and written for many age levels. A recent survey said there were over 10 million family caregivers caring for a loved one with Alzheimer's.

I have a wonderful family that has blessed the school library by purchasing books for special occasions and donated them to our library. The Stow's thoughtfulness has been a great blessing for our students and staff and for me personally.

Picture Books & Alzheimer's

The Sunsets of Miss Olivia Wiggins - by Lester Laminach

The Memory Box - by Mary Bahr

Grandma's Soup - by Nancy Karkowsky

Singing With Momma Lou - by Linda Jacobs Altman

Grandpa's Music - by Alison Acheson

Grandfather's Story Cloth - by Linda Gerdner reviewed in Shen's Books

Wilfred Gordon McDonald Partridge - by Mem Fox

Monday, November 30, 2009

Alzheimer's Research Recieving Reinvestment Funds

I was reading an article at Medical News Today that makes me very excited! America's Recovery and Reinvestment Funds are being used to fund promising research into efforts to treat and understand Alzheimer's Disease. The National Institutes of Health has chosen research that holds out hope for success.

To read the article in it's entirety go to "Recovery Funds Advance Alzheimer's Disease Research" dated 26 Nov 09. http://www.medicalnewstoday.com/articles/172201.php

Sunday, October 18, 2009

Coach Broyle's Playbook for Alzheimer's Caregiver's

I was watching Dr Phil the other day, one of his guests was Coach Frank Broyle, his daughter Betsy, and granddaughter Molly. Coach Broyle and his wife Barbara were married 50 years when she was diagnosed with Alzheimer’s in 1999.

Molly said:”Her death gave birth to our mission and her legacy, to provide desperately needed resources to those who care for Alzheimer’s patients. Pop felt he could use his positive influence to help others."

He wrote the book “Coach Broyle’s Playbook for Alzheimer’s Caregivers” to give individual’s the support and help we need when you start taking care of a loved one and don’t know what to expect. His book goes a long way to help caregivers. This book has been translated into a number of languages.

Coach Broyle on his website generously allows individuals to download the book free of charge. What an amazing gift. What an amazing testament to his love for his wife Barbara.

Dr. Phil interview with coach Broyle, daughter and granddaughter: http://drphil.com/slideshows/slideshow/5323/?id=5323&slide=1&showID=1329&preview=&versionID=

Coach Broyle’s website http://www.alzheimersplaybook.com/

Monday, October 12, 2009

Who's Reality Is It?

Jacqueline Marcell on her blog posted "Top 10 Dementia Eldercare Recommendations"

#6 When dementia surfaces, live in your elder’s reality of what is true for them at the moment. Don’t argue, question, or try to force logic or reason. Agree and use calm non-threatening body language, while you distract and redirect their attention to things they are interested in. Get them reminiscing about the old days, capitalizing on their long-term memory.

I think this is such an important recommendation. It was hard in the beginning to realize that my reality and my Mother's reality were quite different after she got Alzheimer's. I eventually figured out it did absolutely no good to argue or try to change her reality.

I read several of Jacqueline's blog entries and she is an eloquent writer who comes across with great compassion and personal experience.

Until recently I hadn't made the connection of behavior problems and mirrors that some people struggle with. When people with dementia look in the mirror they see an old person, in their mind they are 20-30 and expect to see that reflection.

It would be like walking into a sci-fi movie; being your age and seeing someone else looking back at you in the mirror. How very terrifying it must be to them.

We used to play peek-a-boo in the mirror. My mother loved that game and was happy playing it. I would guess by then she had reverted back in her mind to a very young person, and so the mirror was someone to play with not fear. But I can remember her asking - "Who is that?"

But I can remember when I was little how she used to play peek-a-boo with me. I can remember mom telling me I used to ask about the other little girl. She said I would try to look behind the mirror to find her. Looking back I think my mother wondered about the person looking back at her.

Sunday, October 11, 2009

New Medical Findings

I read two articles that are examining new research on Alzheimer's Disease. In the first article "The Protective Role For Copper in Alzheimer's Disease" published at Medical News. The research suggests that copper may play a role in preventing the formation of and accumulation of plaques in the brain. New studies are being planned for the future.

The other article "Enzyme May be Key To Alzheimer's-related Cell Death" "A Purdue University researcher has discovered that the amount of an enzyme present in neurons can affect the mechanism thought to cause cell death in Alzheimer's disease patients and may have applications for other diseases such as stroke and heart attack."

There is a lot of promising research going on. Hopefully there will be effective treatments developed. It is important to encourage our elected officials and others to support research and treatment for neurological disease's.

Sunday, October 4, 2009

Dental Care

One of my biggest regrets and frustrations was my Mother's dental care. She often fought me about washing her teeth. And so sometimes I just gave in. As the disease progressed she ground her teeth more. I tried to find dentists to look at her teeth and ran into problems because of her advanced AD and the fact that many dentists would not take medicaid and she had no other health insurance.

After I was hospitalized Mom spent her last 6 months in a private care facility. Mom had been diagnosed with thrush and she was having problem with her teeth. The pain in her teeth contributed to her not eating. When Mom was receiving hospice I talked to one of the nurses about the problems with her mouth. The nurse suggested talking to the doctor and asking about a compounded prescription for "Magic Mouthwash", (a compound that includes viscous lidocaine, nystatin, benadryl and sometimes corticosteroid). This compound seems to offer relief and may be worth discussing with your own doctor or dentist.

Having 20-20 hindsight I would encourage you to seek dental care early and try to find someone who can work with people exhibiting symptoms of dementia. Daily care is so critical.

The Alzheimer's Society fact sheet 448 Dental Care and dementia is a great resource. Another resource is from Caring.com - Dental Care for Someone with Alzheimer's disease.

Good dental care can help prevent eating difficulties, digestive problems and extensive dental procedures down the road.

Sunday, September 27, 2009

Communicating

I have been pondering the power of communication and isolation. A friend who works in a smaller district told me how isolated she feels; she even shared; "I hardly ever get emails so I never know what is going on elsewhere."

After hearing that I realized I get lots of email at my job and home. I even get email from our car. My husband and I recently bought a new Equinox, it is set up to run self checking diagnostics monthly and then to send me an email explaining the diagnostic results. I feel pretty connected and supported.

That wasn't always the case when I was my Mother's care giver. I often felt very isolated and alone wondering how to best care for my mother and how to maintain myself despite depression and at times feeling overwhelmed.

I was very fortunate to have a very supportive family and a supportive group of friends. I had access to caregivers and respite when I was at work and when I needed to attend workshops and training; as well as occasional nights out.

The resources available on line are abundant; the quality of information out in cyberspace is very good. I would encourage everyone to either investigate an on-line support group or a support group in the community where they live. Many care givers do not have internet access and many others are not computer savy. For these care givers having a community support group can be a real life saver.

Support group members are great sources for real life solutions to common problems. Just being able to talk to others who are experiencing the same problems you are can be very reassuring.

The individual experiencing Alzheimer's is also feeling isolated and frustrated with communicating. Naomi Feil in her book Validation Therapy, Jolene Brackey and her book Creating Moments of Joy as well as many others offer some very sound ways to communicate with your loved one.

When my Mom felt understood and felt included her behavior and moods were more positive. Virginia Bell and David Troxel in their best friends model for dementia care share that most of all people with dementia need a best friend. I think everyone needs a best friend.

Thursday, September 10, 2009

Caregiving Journal

When I was taking care of my Mother, I developed a caregivers journal. I bought a 3 ring binder and a package of tabs. This book was designed to be grabbed in a medical emergency as well as a day to day record of mother's care. These were the sections I included.
1. Emergency Data - Phone Numbers - Drs, family, friends, caregivers, Programs, everybody I dealt with in regards to Moms well being. I also included a prepaid phone card in cases of emergency caregivers could reach my sister and other family members if I was not there.
2. Calendar with appointments and events.
3. Mom's Profile - Her story. What she liked to eat, stories she liked to hear, how to work with her, strategies to use. Things to be aware of mood shifts. What medication she was taking. Current photos - especially when she was wandering. Side effects to watch for. Music she liked to listen to. tips for safely getting her out of chairs, bathing her and later making sure she had snacks and lots of water to drink. Things she was still able to do and things she needed cue-ing with. I put enough current information, that if for some reason I was not there medical personnel and my sister Rita would have enough information to know what was going on.
4. Medical - Current medication, dosage prescribing physicians. Pill schedule. I included prescription and nutritional. Any reactions we had seen. I also included notarized medical permission forms for the people I had selected to be able to make decisions in an emergency. I made a copy of her medical insurance card.
5. Daily Record - This was kept by each caregiver including me: Mom's current moods, how well she ate, how much water she had drank, if she had been incontinent or constipated. Funny incidents, happy incidents, what they had done that day for activities. What was working what wasn't.
6. List of caregivers- names, numbers, times they preferred to work.
7. A copy of mother's living will. My attorney's name and the fact that my sister would have guardianship if something happened to me. (The original documents were kept with the attorney and were part of my will.) I wish I had put the location of the Power of Attorney I had in this journal. When I was hospitalized no one knew where it was. I had to tell Rita, my sister where it was. It was very fortunate that I was able to talk and eventually remembered where it might be. She needed the Power of Attorney because I was given narcotics during my hospitalization and legally could not make decisions.
I put this together so it was portable and had information that would assist others to make decisions in an emergency if I was unable to do so. It also helped keep everyone who was caring for mother in the loop. What happened before they got there. It helped me to know about mother's day when I came home from work.

Wednesday, August 19, 2009

The Dangers of Dehydration

Dehydration can be a deadly threat to seniors. My mother, Elizabeth, was hospitalized because of dehydration. The Drs and hospital were unable to save her. She returned to the care facility were she had been staying and received hospice care for the last week of her life. I still grieve because I question what else I should have, could have done to have had a different outcome.
Preventing dehydration is key to better health for seniors. Janet Mentes PhD, APRN, BC in the American Journal of Nursing – June 2006, talks about why hydration matters:
Fluid balance, the state in which fluid intake equals output, is essential to health, regardless of a person's age. In older adults, adequate fluid consumption has been associated with fewer falls, lower rates of constipation, and lower rates of laxative use, as well as better rehabilitation outcomes in orthopedic patients and reduced risk of bladder cancer in men. 3-5 Drinking five or more 8-oz. glasses of water (but not other liquids) per day has been associated with lower rates of fatal coronary heart disease in middle-age and older adults than drinking two or fewer glasses. 6 And in one study, drinking 16 oz. of room-temperature water before a meal resulted in significantly lower rates of postprandial orthostatic hypotension in older adults who had autonomic failure. 7

There are a number of factors that contribute to dehydration in seniors. As we age our thirst mechanism becomes blunted we do not always realize that we need water. A second factor has to do with the changes to our body make up. From the age of puberty to the age of 39 - 60% of our body weight is fluid. After the age of 60 years old are men’s body fluid drops to 52% and women’s body fluid drops to 46%. Another factor is the loss of muscle as we age. Muscle cells contain more fluid than fat cells. Medication can also interfere with fluid balance.

Alexcia Hawkes in her blog article The Importance of Hydration in Old Age writes about the importance of drinking enough water. I find it amazing that dehydration contributes to falls, constipation as well as incontinence, and can increase confusion.

Nancy Hearn writes about 12 Symptoms of Dehydration. I didn’t know that cartilage in joints are made of fluid and that dehydration adds to joint problems.
Staying hydrated helps keep us healthy and functioning. Here’s to enjoying more H20 in our daily life and those we love.

Thursday, August 13, 2009

It's Time for a Bath

My mother used to love her bath's then AD set in and taking a bath or shower became war. I learned from a friend whose own mother had AD that many people who suffer from Alzheimer's develop a fear of water. Bath time became a huge struggle. My sweet loving mother would yell at me and accuse me of trying to kill her. It traumatized all of us including my two dogs who were pups at the time.

Someone suggested a bath chair that was a little better. What I didn't know was how to effectively use it. When I hired a new caregiver Jeanie showed me a much safer way of giving mom a bath.

1. Put the bath chair so the back is closest to the faucet.
2. Have mom sit down on the edge of the seat. Scooting back so well centered.
3. Then pick up her legs. Swiveling them into the bathtub.

She remained seated and safe during the procedure.

When my siblings and I were little kids and Mom gave us a bath she would hand us a dry washcloth to put over our eyes when she went to wash our hair. So that's what I did with her. It seemed when the water got into her face and eyes she became more frightened. I also made sure the bathroom was very warm, because she would chill so easily.

I learned that bathtub transfer benches are a great bath safety accessory that makes using tub/showers safer. Two of the legs sit on the outside of the tub. This allows for the user to sit on the edge of the transfer bench and swing their legs over then slide over the tub. This alleviates the need to step into the tub. Hand held showers are the ideal companion item for the transfer bench. Also called transfer tub seats, transfer tub benches, shower bench, or transfer tub seats.

I bought the hand held shower at Walmart and installed it myself with just a few tools. The bath/shower chair that we used had a back and was available through a local medical supply store. Some pharmacies also carry them.

I wish that I had been aware of how to safely use the bath chair earlier.

Sunday, August 2, 2009

Hand-over-hand technique

While reading blogs I came upon The Dementia Caregivers Toolbox. I used to put my hand over Mom's hand when I tried to feed her during the late stage of AD. I never new there was a name for this or why it worked. I am sure many people do this instinctively. It is very reassuring when you get validated unexpectedly.

I encourage you go to the Dementia Caregivers Tool box and read the full article. What a great site. Here is a sliver of the article.

The concept of the "hand-over-hand" technique is beyond simple and can be used by anyone to assist a person with dementia in many tasks. How does it work?

You, as the caregiver, put your hand over the hand of the person who has dementia and gently guide them to the activity at hand. If the task is walking, you would put your hand over their hand and slowly lead them down the hall, maybe clasping both your hands around their hand. If the task is stirring the cookie batter, you would put your hand over their hand and "show" them the motion used to stir and do it with them. You can use this strategy for helping people get in and out of chairs, brushing teeth, turning on televisions, combing their hair, you name it.

Wednesday, July 22, 2009

Elderly Care Waiver Program

Elderly Care Waiver Program helps seniors get help and services to remain in their own homes or community. Each state may have a different name for it but many refer to it as the "Waiver Program for Elderly Care".

The Elderly Waiver (EW) program funds home and community-based services for people age 65 and older who are eligible for Medical Assistance (MA) and require the level of medical care provided in a nursing home, but choose to reside in the community. Counties administer the program as part of the federal waiver program.

What is the Elder Care Waiver Program? Each state has their own program and requirements. The waiver care program can include visits by a skilled nurse, home health care aides, personal care assistant, adult day care, supplies and equipment, certified community residential services (assisted living, residential care)


Who is eligible?
• Those eligible for the EW program are 65 or older, eligible for Medical Assistance, and need nursing home level of care as determined by the Long-Term Care Consultation process.
• The EW service cost for an individual cannot be greater than the estimated nursing home cost for that same individual.

Medicaid State Waiver Program - General Information is a website set up to locate your state's link for further information. Another source for getting further information would be to contact your state's Department of Human Services.

Honoring Caregivers

I was my mother's primary care-giver for over 10 years. I believe that family care-giving is an important story that needs to be told to the rest of the nation. One way to tell the story is the proposed US postage stamp campaign honoring caregivers. The objective of the campaign is to bring awareness of the issues facing family caregivers to the general public, healthcare professionals and public policy officials.

"Currently there are more than 52 million family caregivers (approximately 17% of the population) in the United States. A family caregiver is a relative or friend taking care of a loved one who is chronically ill, disabled, or living with the frailties of old age and no longer able to care for themselves. The services provided by family caregivers represent approximately 80% of all home care services and are conservatively valued at more than $375 billion in 2007."

The U.S. Citizen's Stamp Advisory Committee is considering a U.S. postage stamp honoring family caregivers. There is currently a petition to have a US stamp created to honor family caregivers. If you would like to sign the petition, click on the blue word petition. This will take you to the National Family Caregivers website.

Sunday, July 19, 2009

Impact of a Quiet Question

I have been attending the Montana Writers Project this summer. One of the personal pieces that I have been working on is "Impact of a Quiet Question". As my mother's primary care giver I struggled with many decisions when 9/11 happened. I think all care-givers go through similar struggles as we try to maintain balance between the various demands on our life.

Impact of a Quiet Question

I couldn’t sleep. I kept waking up: 2345, 0045… 0445, 0545 I still needed just a little more sleep and then I finally woke up at 0645. I was late! I started getting dressed; then went to finish putting myself together in the living room. The TV was still on, there was no closed captioning. The sound was still off! I could see the Twin Towers on the screen; smoke coming from one of the towers and a clear blue sky in the background. In my muddled brain I didn’t think about turning up the sound. I tried to think about what movie they were hawking – what movie was getting so much air time?
As I put on my socks my mind wanders back to that June afternoon. I recalled the cracker box room. On the dresser were the new cell phones, my military dog tags, the car keys, and our wallets, and thrown into Dan’s cap was the motel key. A few short hours carved from work and the chaos of home – care givers, responsibility, and the commotion that is always present. I exchange the din for private time with my soul mate. Time away from the mother I cherish. The mother I am losing.
When Dan gave me that cell phone in March, I first thought it was kind of silly. Then I experienced its freedom. I could go, do something, and not worry about finding pay phones to check on Mom. I could go and could still be in contact. Freedom.
As I scan the room I am glad the furnishings do not tell everyone’s story. Like a voyeur I watch the replay – me scootching across the crinkled sheets. The raspy whine of the air conditioner as it spurts out cold air. Up against Dan I snuggle and take shelter in his arms. The bedside clock ticks away our time together. Reality reasserts itself like the sunlight filtering through the drawn curtains.
Out loud I review my to do list that is in the olive green notebook.
• Polish combat boots
• Sew on new patches
• Gather up training manual
• Double check and confirm the times with Mom’s caregiver
• Layout Mom’s pills

I gripe and grumble about what needs to be accomplished this weekend. I bitch about the decisions the higher ups have made. He listens. Now he quietly asks:”Why are you still there if you aren’t happy?” Time stops -1445.
“What do you mean? I’m ok once I get there. I like the people, I just dread the BS. I hate the goat ropes.”
Stroking my hand he repeats: “Why are you still there if you’re not happy?”
I hadn’t thought of happy. Duty, service, responsibility, family and country – yes. But happiness?
I grappled with my decision for the next couple of months. Pondering my choices, I kept feeling it’s time. Impulsively - I talk with my CO (Commander). She asked me: "What will you do?”
Yes, what will I do? Who will I become? Dan’s quiet inquiry echoes in my head “Why are you still there if you’re not happy?” For 24 years I have been a citizen soldier, a member of the Montana National Guard. One question triggers such major changes in my life. I sign the papers requesting retirement on 28 August 2001.

I kiss Mom’s forehead as I watch her sleep. Her caregiver is late today.
I come through the front door of school to an unusual greeting by Natalie, our usually sunny secretary. “Do you have rabbit ears?”
“Not here. I have some at home do you want me to go get them?”
“No. No. It should work in the hall. I am confused. I walk down the hall wondering what that was all about. I need to get to my room and get started processing the books. Tuesday morning I work on automating our library.
Shortly though I am back at the office. The TV is set up in the hall and that stupid film clip is still on. That‘s not right! Finally I ask,” what is happening”? I learn a plane has hit the Twin Towers. The time difference between NY and Montana adds to the surrealism. Viewers watch as a second crash is reported. My mind replays the decision I have recently made, knowing that retirements will be frozen.
With two crashes I know it is not an accident. I head for my room to call my unit and report in. When I ask for a status report I am told nothing has come down. My sister calls; she is on her way to Colorado for her work. What do I know? When will she need to get Mom? What paperwork does she need to complete for Mom’s care? I tell her what I know and proceed making calls to set up care for Mom when I deploy.
I am humbled by Rita’s love for Mom and me. In May 1999 I was sent to Germany for a 30 day deployment. Mother had been diagnosed with moderate advanced Alzheimer’s in 1998. Those 30 days were a difficult sentence for both Rita and Mom. She was belligerent and antagonistic because she was out of her comfort zone and was trying to find her way home.
In order to keep her safe Rita & her young family wired the gates shut, put deadbolts at the top of exterior doors. They tried every means possible to stall my mother’s escape plans. Mother, like any good soldier held against her will valiantly followed the Military Code of Conduct (Section III)
a. If I am captured I will continue to resist by all means available. I will make every effort to escape and aid others to escape. I will accept neither parole nor special favors from the enemy.
b. The duty of a member of the armed forces to use all means available to resist the enemy is not lessened by the misfortune of captivity.
Mother was a valiant soldier. She never passed up an opportunity to try and escape.

I learn if Mom goes to Wyoming with Rita, the cost of her care is only covered for 30 days. Rita and I talk again. We now make plans for 24 hour care here in Montana. I continue to check in with the unit. No one has been given any intelligence. I am frustrated but continue to make contingency plans for my probable deployment and the care of my mother.
Dan calls me. The Pentagon has been hit. We are talking when the line goes dead. My friend Bernie is at the Pentagon. I am worried and try to reach her. Of course I don’t get through. I think of her and have a sense of peace. Later that night I get through to her. She was scheduled to be at a meeting in the section where the plane crashed. But she had “use- it- or -lose –it- leave” and so was home. She watched the plane flying low over their street just before it crashed into the Pentagon. She is grieving the loss of good friends. I am relieved that she and her husband, Ron are safe.
As I am seeing the news coverage unfold, I continued thinking back to the day that had triggered my decision to retire from the guard, 15 days before 9/11. Yet even as I made that decision the world shifted on its axis and intersected mine.


A part of me was relived that my retirement papers were in the pipeline. I also knew that all of my training was for just this sort of moment. The third and most critical concern is my mother's care. She started living with me just before being diagnosed with Alzheimer's in 1998. I am juggling a full time job (teaching/library); being her primary care giver; and my career in the Montana National Guard. My internal struggle is which call to follow.

Days go by and still my unit is not called up. I learn that my paperwork has been pushed through even though there is a freeze on retirements. I second guess myself trying to decide if I’ve made the right decision. I know that eventually my unit will be activated. I consider pulling my papers.
Dan and I discuss my options. I fidget with my dog tags as he quietly reminds me that I have served my country for 24 years and that my family needs me now. In my heart I know that he is right. If I go, Mom will not be here when I return. I am haunted because I do not want to make that sacrifice.
In the bible Jacob wrestles with “an angel of the Lord” all night and doesn’t stop until the angel agrees to bless Jacob and his family. My struggle feels more like wrestling demons for a part of my soul. I am truly blessed because I have the freedom to make this decision - the freedom that I so revere. I continue to grapple with the formidable questions: Who am I? Who will I become? And will I be happy?
I read later that my former unit was called up.

Sunday, July 12, 2009

Connection between Alzheimer's & Nitrates

"A new study by researchers at Rhode Island Hospital have found a substantial link between increased levels of nitrates in our environment and food, with increased deaths from diseases, including Alzheimer's, diabetes mellitus and Parkinson's. The study was published in the Journal of Alzheimer's Disease (Volume 17:3 July 2009)."

According to the article Researchers Find Possible Environmental Causes For Alzheimer's, Diabetes Researchers have found a parallel between the nitrates in our processed food, soil, ground water and fertilizer and deaths from Alzheimer's, Parkinson's, diabetes and other insulin-resistant diseases.

Oh my! The article said these diseases are pandemic.

In my mind this finding offers hope for some new leads in combating these diseases with medicine. But, maybe more importantly through changing our eating habits on a personal level. This article also shocked me as I took a mental inventory of what I have been eating. Lets just say if nitrates came in the form of a salt shaker, you wouldn't have tasted anything else.

Much of what I have been reading lately speaks to the hope that a diet similar to that eaten in the Mediterranean may be optimal for our health. That is proving quite a challenge for me as I am addicted to so many processed foods.

The second research findings that caught my eye was the connection that these diseases are insulin-resistant. In other articles I have read they have drawn a connection between belly fat as an increased risk factor for developing Alzheimer's. I have had a weight problem most of my life. Recent findings on that front also recommend a Mediterranean diet for achieving weight loss and a healthier lifestyle. It scares me that there is a connection between my belly fat and a greater risk of developing Alzheimer's.

Monday, July 6, 2009

Keeping the Brain Sharp

Please read the full article at the Alzheimer's Research website on brain health.

10 Tips for Keeping the Brain Sharp Into 2009


One piece of excellent news in the past year was that brain health seems to be improving among older Americans. A large national survey from the University of Michigan found that over a 10-year-period ending in 2002, memory loss and thinking problems were down significantly among seniors aged 70 and up, from 12.2 percent to 8.7 percent. That’s a change that translates into hundreds of thousands of men and women, though Alzheimer’s is still a top concern for millions worldwide.


Here’s a roundup of ALZinfo.org's Wellness and Prevention stories from the past year that may help set the tone for a brain-healthy new year:


1. Stay Mentally Challenged.

2. Practice Good Waist Management.

3. Work It.

4. Stay in School.

5. Maintain an Active Social Life.

6. Walk for the Brain.

7. Keep Cholesterol in Check.

8. Control Blood Pressure.

9. Pass the Fish.

10. Surf the Web.


Click here to get detail info on this article

Sunday, July 5, 2009

Tools for the Care Givers Toolbox

One of the resources that I love is the free quarterly magazine care ADvantage. I still subscribe to it to keep up on Alzheimers and to marvel at what other people have accomplished. It is a free publication of the Alzheimer's Foundation of America.

When I first started caring for my mother I met a young woman in my National Guard unit who told me about "Validation Therapy" that was developed by Naomi Feil. Shortly after that I had the privilege to attend a AD conference where Naomi was the featured presenter. What an awesome experience. It truly helped me begin to fill my caregiver's toolbox.

I was pleased to learn that the website fore "care Advantage" has archived copies of past articles on Validation Therapy. The Fall 2008 edition has the article "The Validation Method at Work". I hope this resource becomes as valuable to you as it is to me.

Friday, July 3, 2009

Leeza's Place

Leeza Gibbons has written a book titled "Take Your Oxygen First". After reading some of the reviews it's going on my list of books to read soon! It sounds compelling.

Leeza Gibbons has developed a great website. It has great resources for caregivers and their loved ones. It blew me away. The site deals with solving today's problems as well as helping fund research for a cure. Her mother said, "Tell my story and make it count." Leeza has surely done that.

Tuesday, June 30, 2009

Preventing Wandering with Door Alarms

Sundowners combined with wandering can be a trying time for caregivers. My mother only experienced "Sundowners" for a short time. However one experience lasted over a week during which she did not sleep at all. I managed for about three days to stay awake. It was a grueling experience. I was fearful that she would go outside and I wouldn't hear her leave. I talked to Mom's social worker, Dee Dee, and she suggested door alarms.

The set we got was from RadioShack and was actually a home security system. The system had wireless alarms that were attached to the door and frame. It had a central receiver that was plugged in. You could program it to call the police if the alarm went off (I disabled this option). The door alarms could be set to "chime" or make a "raucous noise" that was loud enough to wake the neighbors.

Shortly after the alarms had been installed I was talking on the phone to Dan (my husband to be, at this time we were just dating). Just before he called me, a friend of mine and her grand-children stopped by to visit. While talking to Dan one of the kids went out the door, making it chime. I continued talking because Mom was sitting on the couch beside me. After the door chimed Dan said, "Why are you still on the phone?" I explained to him that Elsie and her kids were here and Mom was safe.

I was amazed when I realized how conditioned all of us were to listen for the chime. The door alarms saved my sanity and kept Mom safe.

I have seen updated door alarms in several places. The prices for most systems are very reasonable. (1) Wireless Door Alarm (2) Wireless Door Watch Alarm (3) Door Alarms

Wednesday, June 24, 2009

Wandering

Many people with Alzheimer’s or other memory challenged folks sometimes wander and cannot tell anyone who they are or where they live. When Mother would get away from one of the caregivers or me; we would start to search. Talk about panic and anxiety.


The other day a friend of mine told me of an incident where she found a lady who did not know her own name or who to contact. My friend called the police and eventually this lady and her family were reconnected. One of her observations was no one really knew how to respond to this situation (911; the police; the family nor community members at large. This got me to remembering my own experiences both as a searcher and as a community member in a similar situation.


As I was surfing I saw an ad for a GPS unit for people with Alzheimer’s. The initials GPS stands for global positioning system. It helps track an individual’s location if they have a GPS device with them.


My research showed that several other countries have GPS bracelets and other GPS jewelry that hasn’t yet been offered in the United States. I did find several companies that do offer some form of GPS monitoring devices for families. (1) Quest Guard (2) World Tracking Solutions (3) Wander Guard (4) RadioShack

Our Good Health has an interesting article about practical solutions for real problems that are faced by care givers and their families.


The Alzheimer’s Store and found two books that connects to the problems of wandering. The first is a workbook called “In Search of the Alzheimer Wanderer” by Mark Warner. It is a workbook for the families and community members to deal with the problems of wandering. The statistic that I read said many wanderers die if not found in the first 24 hours. The second book is the story of Stella Mallory Dickerman “Gone Without a Trace”, who unfortunately was not found in time. It is written by her daughter Marianne Caldwell.



The GPS units that I located were a little pricey but I noticed an article from a community service organization seeking information and prices because they wanted to purchase GPS device for several families.

Friday, June 19, 2009

National Impact of Alzheimer’s

According to HBO Alzheimer’s Project - the Harris Interactive Census - 54% of the US population (100 million people have been touched by Alzheimer’s.

What an overwhelming statistic. The Alzheimer’s Project website is a great resource. The project is a 4 part film documentary by HBO. The website also has 15 supplemental films (many about current research). Community resources and out reach projects. They also have a tribute wall for people to add their stories.

Alzheimer’s has affected many of my Mother’s family: 1 of her aunts; her mother; one brother; one sister; and herself. According to the Harris Interactive Census it is the 2nd most feared disease next to cancer. One third of American adults are afraid of getting it.

In another article I remember reading that currently 5 million people have the disease, but Alzheimer’s affects many more than that when you consider the impact on family and friends. Mind blowing numbers!

For me, seeing how current research is progressing is very encouraging. When I started caring for my Mother there wasn’t a lot of information about being a caregiver and information on the disease itself was limited. What a difference 11 years has made. My Aunt went into an assisted living center about two years ago. I talk to her on the phone about once a month, (she lives in another state) I am impressed at how well she is doing. She doesn’t remember being told about Mom’s passing and I don’t remind her.

Thursday, June 18, 2009

Trips To The Store

Excursions with a person with Alzheimer’s is both rewarding as well as stressful. One particular event made me change what procedures I used when I took Mom shopping with me.

During one Christmas season I took Mom shopping at Wal-Mart. The store was packed. It was snowing outside, the sidewalks were slippery, the parking lot was overflowing and there were lots of people in the store.

I kept my Mother close to me. I was very conscious of where she was. Then I turned my back for just a moment. She was gone! I was panic stricken. I searched the store, talked to security all to no avail. I went back to where we first got separated. I was trying to describe my mother to the security guards when I looked up to see a family walking towards me, followed by my mother. I was relieved! I was ecstatic!

I remembered seeing them earlier. The mother said that they walked by us and awhile later realized that my mother was following them. They decided they would go back to where they first saw us and see if they could find me. After that incident I made a number of changes.

1) I chose times and places that were not chaotic.
2) I made tags from shrink art plastic with my mother’s name, address and phone #. I attached these to her coat, her shoes and her shirt.
3) I made a homemade leash similar to the one my mother made for my rambunctious sister when she was a toddler. I tried to make it as unobtrusive as I could. Unfortunately it frequently came off. I tried looking for hi tech options with variable success.
4) I carried current pictures of my mother with me.

Recently I read an article about a mother who takes a picture of her child with her cell phone before each outing. What a great safety strategy that would also work with memory challenged individuals. It would provide current picture and accurate description of what they are wearing today. Having it on your cell phone makes it easy to forward to police or other individuals who are helping to search if someone gets separated.

It was a great day when I learned about the Alzheimer’s Safe Return Program www.alz.org/SafeReturn 1-800-272-3900. This program helps police and caregivers 24/7. Registration is about $40.00 part of the program includes jewelry and identification cards and a number if the person is found.

Wednesday, June 17, 2009

Read Aloud Books for Memory Challenged Adults

A few years ago I read an article in Woman’s World Magazine about Lydia Burdick and the book she had just written for memory challenged adults. At the time I ordered her first book (Sunshine on My Face) my mother was not talking very much. As I read the book to her- she saw the pictures of the cows and responded: “Moo! Moo!” It was a magical moment!
According to the reviewer, Margaret Withey, from the Observer – Lydia not only wrote a book but created a new genre. I believe that is a true statement.
Other Read-Aloud Books for Memory Challenged Adults
Happy New Year to You by Lydia Burdick
Wishing on a Star by Lydia Burdick
Through the Seasons: An Activity Book for Memory Challenged Adults by Cynthia Green
A Loving Voice: A Caregiver's Book of Read-Aloud Stories for the Elderly - Edited by Carolyn Banks and Janis Rizzo


Sources & Reviews: www.healthpropress.com
New York City Alzheimer’s Association Chapter: www.alznyc.org
The Observer www.hartford.edu/NewsEvents/ObserverPast/ObserverFall05/books/sfbfa05b.html
Audio Archives – Lydia Burdick www.wsradio.com/copingwithcaregiving/january2005.htm
The Alzheimer's Store www.alzstore.com

Alzheimers: the on going journey

My mother, Elizabeth Chandler, was diagnosed with moderate-advanced alzheimers in October 1998. She passed away June 10, 2007. During most of that time she lived with me. I still miss her. In honor of her life I would like to share some snapshot experiences from our family's journey.
In looking back there are things I wish I had understood better, and successes that I wish we had celebrated more.

Last fall (2008) I attended the Montana Alzheimers Conference, one of the presenters was Jolene Brackey. I wish that I had met her years ago. She shared some very practical and down to earth strategies.

One observation that she made was to determine where in the past your loved one is living. If the chrological age of the person is 85 and they are worried or talking about their young children. In their mind they are probably about 25. Jolene's recommendation was to find and copy pictures from that time of their family. She also said to write out the names, including pet names, of the people. Write several short stories (events) about the people in the pictures. Make copies of the pictures and the stories so that anyone who visits your loved one can talk about that time and people. This helps them reconnect to their memories, and gives them real conversations.

"Families have the knowledge to build a bridge between the care provider and the person with Alzheimers. Once families understand dementia and how to apply the knowledge they hold. They can become "helpers" in the journey." - Jolene Brackey


Jolene has a CD set called "Family Moments"