Getting Through the Dark Days of Caregiving--Book Now Out

I always liked this picture. I chose this picture for the cover of the book. It was taken in 2012 about two years before my late husband, Herb, died. We took classes in the afternoon at our Lakeland Church, and Herb chose a comfortable chair to sit through this counseling class and I love his smile. 

The publisher blocked out all the rest of the picture, not showing the "faith" on the bookshelf or my purse on the floor! I love the book cover with its dark grey. You are a caregiver, a hard situation, for your loved one and at times they shine through. That cover says it all for me. 

You might recall that this project started out as a seminary counseling dissertation for an EdD degree, with the seminary in Florida, and my having moved to Alabama. I went back to Florida twice for that dissertation, but then decided that I really didn't need a counseling degree in my 70s--nor a dissertation. So the project morphed into a book. I want friends and churches to help with the caregiving and the book helps them help. 

The book is from a Christian perspective, but I didn't feel I had time to hunt up a Christian publisher. Yes, I had written for Gospel Light Publications, D. C. Cook, and a Dallas publisher, but that was YEARS AGO and that was all about Sunday School curriculum. After all I am getting up there in age! I wanted people to know with the LORD's help you can be a caregiver for your loved one. I chose a self-publisher, Xlibris. I didn't have time to find that publisher.  

I invested money for Xlibris to do this. Then they wanted more money for marketing, but I have VERY limited funds because of my caregiving and didn't go for it. Suddenly what I thought was finished, isn't! I now have to promote the book! 

Footnotes were a big problem. I learned what needs permission and what doesn't need permission. I learned that Chicken Soup for the Soul needed money to quote them and, sure enough, when the book came out, they cashed my check. Someone else has a check also. Have to research who that is. All of the permissions were sent to Xlibris via email, with the exception of less than 10% of book quotes and public domain quotes which didn't need permissions. I quoted myself from this blog. 

With my going through eye surgery now, there are a few printing mistakes that I didn't catch and the publisher didn't catch, but basically I was my own editor as a former English teacher in public schools. Xlibris made the pages and put the pictures near where I suggested. I had to sign off on different parts of this publication process including the ebook now advertised for $3.99 on Amazon. Two lovely reviews are now on Amazon and those reviewers got their ebook from Amazon. 

You can order Getting Through the Dark Days of Caregiving from Xlibris, Amazon or Barnes & Noble. Have NO idea how I will get paid for this book, folks! I can buy them myself from Xlibris and then charge the regular price for them. I mailed priority rate books to four people for about $8 per book!

My free book copies came last Tuesday night when I got home from Toastmasters--two hard back copies and eleven paperback copies. I am keeping one hard back copy and gave the other one to Huntsville Health and Rehab that has one picture and input in the book. You may recall that I lived there for three weeks, and visit there regularly, including seeing my friend Virginia who turned 100 February 21, 2019. 

I had two experts read and endorse the book: Dr. Eyrich and Rev. Mahn. I personally brought Dr. Eyrich's book to him last Thursday in Birmingham. That day I also gave one copy to the Alabama Alzheimer's Association located in Birmingham. Rev. Mahn will get his book Tuesday night at a Huntsville grief group dinner that I am going to. Mahn helped me with my own grief and that tenth chapter on grief. There are others who helped edit the book and their names are in the acknowledgments.

Friday I substituted at a middle school where I have many fans because they like my raps. I showed off the hard copy and they clapped. I wanted them to know that I am not just a silly substitute who raps and has a YouTube, but wrote a serious book. 

Caregiving is serious 

and so is my book! 

Y'all buy it! 

Attending a Huntsville Alzheimer's Association Conference

Met a speaker, Chanda Mills Crutcher, founder of American Senior Assistance Program, who really had common sense about seniors and caregiving. Her friend had wanted us to meet and we did! She even had me rap at the end of her talk. 

I did my rap about helping seniors. Oh my goodness! They were recording me in the audience! Bad hair day as usual! They just needed to see this on YouTube where it is called "Technology" by my producers. 

Also talked with Sally who is the 24/7 caregiver for her mom. She was on the verge of tears. I emailed several in her church who might be able to help. 

One excellent workshop was on Alzheimer's proofing the home by Jason Parks, Lead Pastor & Chief Executive Officer, Refuge Church. I wish I had had that workshop years  ago. If you have been following this blog you know that I went through "The House That Cleans Itself" several years ago and with each room I thought about safety for the home. Hope to get together with Jason for input on that dissertation. 

This workshop was in The Cooper House auditorium -- a facility owned by the church I attend. 

Cooper House With Large Auditorium in Back

Walking to workshop with church in the background

Back to writing my caregiving dissertation while seeing that Sally gets respite from her church. 

Carol

Dissertation on Caregiving

Since 2006 I have been taking seminary counseling classes at my church. They are held sporadically after worship service. One class I had the privilege of teaching--counseling children. Incidentally, there are so many ways that Alzheimer's loved ones are becoming like children and Montessori techniques are great for children and our loved ones.

In the last class we practiced counseling techniques before everyone and we had a very talented couple amazingly act out the problem. I made a mistake of teasing the husband about yogurt, and he reminded me that was "privileged information". I gave him a quick (maybe not sincere) apology. I think I will buy him some yogurt for more of  repentance! But he even brought a cup of yogurt to this practice session!

One of the lovely newlyweds at our church acting for me

For this biblical counseling degree I read lots of books and outlined or summarized them. I studied for essay tests.  During these seven years one project was my book, Getting Off the Niceness Treadmill. Hubby read all the early papers and gave helpful comments with the early papers and the book.

In 2008 it became evident that my husband had dementia, later diagnosed as Vascular Dementia and Alzheimer's, My papers changed to reflect caregiving, but I didn't have him read them and also he became less interested in my academic pursuits. Papers included:

• The authority of an Alzheimer's husband
• Dealing with anger of an Alzheimer's loved one
• Praying well
• Dying well
• The self-discipline of a caregiver

This has been a wonderful opportunity for this old gal (I am 68). Let me know what you think should be in my dissertation. I will include some of the above topics.

Coconut Oil Revisited

Take time to view  Tradition of Tropical Traditions Coconut Oil video. These are the people I buy our coconut oil from and their video is informative. Loving Your Guts blog is giving away expensive coconut oil here. Go there soon to enter. I also have a link to Tropical Traditions at the bottom right of this blog.

Here is a research link from Dr. Mary Newport, where I first got this information. Happy Birthday, Dr. Newport--today is her birthday!

Use Wih Oatmeal, Stews, Casseroles

If there is something I can put coconut oil in, I usually do. My adaptation for coconut oil toasted cheese sandwiches on this blog has had many hits as has Mary Newport's information. .

My Station Where I Put Make Coconut Fudge

Most often now, however, I just make coconut oil fudge from Dr. Newport's book. This fudge is my husband's "go to" food for breakfast and for lunch. I give him two cubes at each meal. Sometimes he gets some with his ice cream at night as well. It is half dark chocolate chips (dark chocolate is an antioxidant) and Tropical Traditions Gold Label Virgin Coconut Oil. After melting together equal amounts of the two ingredients in the microwave, I mash with a potato masher and put in ice cube trays. Once frozen, I pop out the cubes and store in the refrigerator. I have a "station" (concept from The House That Cleans Itself)  for making it in my kitchen.

This oil calms my husband and perhaps slows down the Alzheimer's. It is controversial, but finally Johnny Byrd Alzheimer's Center is doing research on it. When this center first diagnoised my husband, they smiled at my use of it--like I am crazy. Now they are doing a research study. Yes, my husband is slowly going downhill, but maybe not as much as you would expect.

Coconut oil has all kinds of benefits, not just for Alzheimer's patients. It apparently is an antibiotic. My copy of The Coconut Oil Miracle is loaned out and for good reason.

Diet, Cholestrol, Axona and Coconut Oil

from coconutoil.com

Those low-fat, no-fat diets are not good. Now Weight Watchers insists that we have fat. Another site on coconut oil just confirmed here. This site led me to "The Clue to Why Low Fat Diet and Statins may Cause Alzheimer’s" here.

Dr. Mary Newport has reported that CBN are featuring coconut oil here. When you start that coconut oil, you need to build up tolerance and we did with my husband who has been on it for three years. Dr. Newport says that CBN will:  feature Butch Machlan, a man with familial ALS (Lou Gehrig's) who has been stable for three years taking 9 tablespoons per day of coconut oil and magnesium chloride, and will also feature a man from Connecticut with Parkinson's who has had considerable improvement since shortly after the first story aired [Dr. Newport's], taking a mixture of coconut oil and MCT oil.  

Meanwhile there is the suggestion that Axona can be prescribed and monitored better than coconut oil; Dr. Richard Isaacson reports on Axona on The Alzheimer’s Reading Room here. He reports two clinical US trials.

Not all doctors know about Axona and I will ask my husband's doctor about it on his next visit. My husband's doctor approves of his coconut oil (his glucose and cholestrol are great) and coconut oil does not elevate my husband's triclyceride levels as Dr. Isaacson suggests.  Finally there are research studies on coconut oil beginning. Perhaps my hubby doesn't get enough coconut oil, but he does get it everyday with dark chocolate and when I can use it in cooking. I even arranged for him to have it on our trip.

He takes turmeric pills. They say that in India that turmeric and coconut oil may account for less dementia in the older population.

When your loved one has been diagnosed with any kind of dementia as my husband has, you cannot wait for the research studies to come out and I am glad I haven't.

Brill's "Alzheimer's Disease" for young people

The Marshall Cavendish Corporation has produced a series of books I discovered in substituting in a Plant City middle school. While the media specialist talked with the eighth graders about primary sources, I discovered a secondary source library book. The books in the 616 section of the library by this publisher included: Asthma, Depression, Heart Disease, Juvenile Diabetes, Lung Cancer and Alzheimer ’s Disease.

While the two children’s books I reviewed earlier here (The Memory Box and What's Happening to Grandpa) are helpful, Marlene Targ Brill’s Alzheimer’s Disease is a 2005 copyright book with much helpful information for grades six and older. We need this book to help our young people understand dementia. Mrs. Brill carefully covers the basics of the disease in 57 pages with a glossary, organizations and other references that follow.

Chapter 1 What Is It Like to Have Alzheimer’s Disease? Adam has grandmother with it and Jose’s grandfather has it. This chapter gets the young person into the topic. I do find many young people in middle school and high school are acquainted with Alzheimer's and at times I am able to talk about my husband's illness and the illness of their relatives.

Chapter 2 What is Alzheimer’s Disease? In a simple way Brill explains plaques, tangles, who might get AD, what are warming signs, how is it diagnosed, and what are the stages. This chapter has a picture of an EEG, a CAT scan and an MRI. She does not deal with two areas: 1) dementia distinctions (Alzheimer’s is the most common dementia); and 2) the latest research, although she does hint at studies in chapter four.

Chapter 3 The History of Alzheimer’s Disease. In 1907 German physician Alois Alzheimer was first to discover the disease. The section on new discoveries are not so relevant, but we do need budding young scientists to dream of cures for dementia, cancer and other diseases. Science and medicine can come alive for young people.

Chapter 4 Dealing with Alzheimer’s Disease. Cholinesterase inhibitors are described, but not Namenda. The suggestion is that aspirin might prevent AD. Old information is in the book; for example, ginkgo biloba is heralded:

Studies in the United States have shown that the extract improves thinking, memory, and behavior in people who have AD ( p. 44).

However, this is not true as Science Daily points out here. The moss extract huperzine A and fat from cow brains are also mentioned as possible help. Huperzine A has been used in China for centuries, and I found this resource here. What about fat from cow brains or hospatidylserine? The Mayo Clinic says some about this here.  However, improvements in memory lasted only a few months and were seen in people with the least severe symptoms.

The next sections, “Helping the Person with Alzheimer’s” and “Helping Caregivers” provide general reliable information, but of course more can be added—the benefits of exercise and socialization, for example.

With the exception of the outdated research in chapter four, I highly recommend this book for a young person and hope the publishers will revise it.

On another note, I am considering advertising books I have reviewed here or will review on this blog. Some reviews I already put on Amazon.  Advertisement could help provide income for a blog that I work hard at providing as I take this Alzheimer's journey with my husband and with others. What do you think, gentle reader? Feedback needed. Thanks. Advertise?

Also, thanks to you all who helped support the team I was on for today's November 3, 2012 Alzheimer's Association Walk around Lake Hollingsworth in Lakeland, Florida. Funds will still be collected on this blog for two more weeks. You can contribute with the link at the top right until November 17th.

If you have "liked" Plant City Lady and Friends on Facebook (top right), you can see pictures of my facilitator "Ann" and our friends "Sally and Jake" and my husband and myself.

Handling Clutter: More On the Den Area Number Two

You

Have to

Make It

Look Easy

Staples has an easy button, but they don't have that vertical file from Office Depot that is helping me organize temporarily . Organizing is not easy. The commitment in The House That Cleans Itself by Mindy Starns Clark is to do that HARD WORK so you can have EASY. Having a loved one with Alzheimer's is hard enough--at least the house can be easy and simplified.

Mrs. Clark has many principles that I am applying. One is stations so you do not run around the house getting what you need and then having to put things away--or not and then it is cluttered again.

She also says to put things on the wall. My iron and ironing board are now in an unobtrusive corner of the den between a bookcase and a door leading out to the workshop.  I use the iron and ironing board in the den when I sew and sometimes for ironing clothes. EASY! I do not have to go far to put them away now. We had Sally and Jim's son over for repairs and he put them up for us. The iron is on an holder from Ikea that I had for several years, never deciding where to put it.

Their son also solved a huge problem in the den-- very small ants who seem to get worse during the rain. He got up on a ladder and found where they were coming from and sealed those places with silicone. Fortuately these small ants never invaded our kitchen and pantry closet.


The hardest work in the den and maybe the whole house is paper clutter. FlyLady talks about it here and she hits me right where it hurts. How I wanted to be able to tell you, readers, that  the den is done, but it is not because of that paper clutter.

Who do I think I am--an historian of my own life? A librarian collecting magazines and books in case someone needs something?



Beyond pool table: File/sorting station, sewing cabinet, pub table

What has been done? 

• Furniture has been moved. One piece went to the large master bedroom we have and on it is a bomb box and an iPod player. Inside are CDs and tapes. An small end table with storage is now available to hide kids toys. On top of it are coasters for drinks for those playing pool. The four drawer file was moved. The half book case that used to be in that master bedroom is now in the living room temporarily by the piano for putting books that may be donated or traded in at a used book store in Plant City. A pub table is available in the corner. The sewing machine and sewing projects used to be there.  
• The pool table is now free. I can play pool with my husband! When it is his turn I can work on paper clutter! He needs something he likes to do beside watching TV. He doesn't like to get on the riding lawn mower to mow the lawn, but that is another story.

• There is a clutter sorter station, a sewing cabinet that doesn't look like one, and a nearby pub table that seats four!

What would you like to drink? Pool anyone?



What needs to be done?

• Paper clutter.
• Clean the rug.
• Sort through books.
• Get rid of my overhead projector I used to use to teach DUI classes. I now use an LCD projector with a Power Point on my small notebook computer for speaking. Get rid of other stuff or find it a home in our home.
• And did I mention paper clutter!
• The bins under the pool table need to be sorted through and moved. Mrs. Clark is so right. Don't buy those suckers--they just keep you from solving problems.
• Make the four drawer file contemporary, not historical. Keep only the paper that will go in there.
• Use Mrs. Clark's system of the one collection bin for the week while I substitute teach and the weekly filing and monthy filing to keep on top of that paper clutter.

All of this is not so easy yet. LORD willing we will play more pool and I will get there with this room.

What is also not easy is the death from Alzheimer's of Dolores' husband and the death of my last relative in the older generation; my aunt had dementia in her last years.

I do have a serious rap I give at the end of good classes.

Educated, dedicated, motivated, college-bound
Where are those students?  We need them found.
Hey you hims and hers
Think pink--no more cancer
We need cures.
Hey you hims and hers
Think purple--no more Alzheimer's
We need cures. . . .

The next generation will undoubtedly come up with cures. Let's hope so.

What I'm Learning About Senior Health, Part Three

Workshop. Sally and I went to workshop at the USF Johnny Byrd Alzheimer's Institute on August 30th. DH and Jake spend the day at our home. Dr. Kristin Fargher, Assistant Medical Director at the Institute, gave an excellent overview called "Understanding Alzheimer's Disease and Progress in Treatment". 

This session was followed by Jill Ardila's presentation on "Clinical Trials: One Step Closer to a Cure." Sally has been having trouble sleeping lately and she has just joined a caregiver study now on the sleep of a caregiver that Jill Ardila mentioned. Jill also mentioned that current research for AD patients includes Resveratrol and coconut oil! When hubby was officially diagnosed with Mixed Dementia at Byrd Alzheimer's Institute two years ago see here, they were not impressed with the coconut oil I had been giving him. I just read that post again and realize that hubby really is doing so well in the past two years and so am I with the LORD's help. Now the Institute researchers have met Dr. Newport (whose interview video is one od the most viewed post on this blog) and are actually conducting research on it!  So glad DH has been on coconut oil for three years. He does get it with his coconut oil fudge for two meals. Perhaps he doesn't have enough every day, and maybe I can give him more by cooking with it most days. 

After a wonderful lunch, Eileen Poiley the Institute's Director of Education talked on "Strategies for Managing Behaviors and Communicating with a person with Alzheimer's". Her tips deserve a whole new post which will follow at some point. 

Off-hand Comments at the Workshop. I heard that Resvereatrol (has ingredient in dark chocolate) is at Sams Club and will look into that. One of the participants informally during a break talked about people in India cooking with turmeric and curumin and not having as much dementia. Hubby does get this every day with a Vitacost pill and whenever I can cook with it.

Scam? A series of studies have come out that says that aging is a result of oxidated stress where free radicals destroy some of the cells. Joe McCord and others have "discovered" that the taking of one pill of Protandim can help us not age, or return our T bars to a lower level. That video is here. Two of the ingredients in this pill my husband already takes--green tea and tumeric. He also has cinnamon on his applesauce he gets in the morning and often on a sweet potato. However the case is out on Protandim and if you Google it you see what ingredients are in it and that it might be a scam, or at least a scam in its marketing. I wonder if it was "the one thing" that was in the post here--a most popular post to date on this blog--the one thing that I never listened to because of the marketing approach.

Teeth. Got to floss, folks. Plaque can get into the blood stream through the teeth.  Never connected heart health and teeth before. Actually have been going to a really good dentist for almost two years now when we got on Preferred Care. Flossing is hard for my wrists since I have carpal tunnel symptoms again, but got to do it.

Shingles. You can get a shingles shot at Walmart in our area this week. Hubby got shingles after he was first diagnosed with dementia soon after I started this blog almost four years ago. Preferred Care will not cover this shot for me, but I am considering paying for it because of the stress of caregiving and over a year ago my doctor said seniors should get this shot.

MSM. I am taking MSM for my carpal tunnel as I did years ago. My doctor approved. Also I am wearing my braces at night and during the day some.  I also need a hearing test.

Aluminium Deodorants. Can people avoid Alzheimer's by avoiding certain deodorants? See here. While it may be a good idea to not use aluminum in cooking, we do not know that we have to avoid it in deodorants unlike that site implies. Nobody else on Google is saying that aluminum in deodorants causes Alzheimer's, in fact it is called a myth if you google it. This site sums it up:

It is interesting that the Aluminum/Alzheimer's connection continues to persist for many people, even though in the 1960's and 1970's after it was first suspected and researched extensively, no connection has ever been found. There is still no known cause of Alzheimer's, but a few things that are believed to help prevent it are: eating a diet rich in fruits and vegetables and low in fat and cholesterol, staying mentally active and learning new things, and exercising regularly.

I have been thinking about neurotransmitters recently, you know, Seretonon, GABA, Dopamine and Acetycholine and how we get them from healthy eating--those superfoods. Those neurotransmitters connect the neurons that my husband is losing slowly I guess. If we are deficient in neurotransmitters certain conditions can happen--low energy, brain fog, anxiety. Also, friends are on the GAPS, Paleo and/or no gluten diets and seeing significant benefits for their families.

I am dieting with Weight Watchers which also emphasizes healthy eating, not just weight loss. My weight loss is slow, but, I feel great and am fitting into clothes I used to wear.

Diet, what we eat, is not just losing weight. Good eating habits are important for us seniors and our Alzheimer's loved ones, who sometimes think they can live on ice cream!

Supplements That May Help

Regularly my husband gets all the nutrition we can afford. The Alzheimer's Reading Room (http://www.alzheimersreadingroom./ has many posts that give insight and here is one with a chart I saved from their research.

What? No coconut oil? I know it works. It is interesting that Dr. Mary Newport's video on coconut oil is the most popular post ever viewed on Plant City Lady and Friends--top of that list. I do not think that my husband would still be in stage one and so happy if it weren't for his coconut oil. Dr. Newport also told me by e-mail to not neglect his Alzheimer's medicines because of the coconut oil, and so twice a day hubby gets Namenda and Exelon pills.

My husband prefers Lipton Diet Green Tea. Notice that green tea is high on that list. So is Omega 3 oil which according to an article by Megan Brooks  may protect against Alzheimer's. I got some that is like candy to give my husband from Winn Dixie the other day. He does take fish oil tablets, but does not like salmon as I do and try to eat whenever I can.

Fran Lowry writes that berries help cognitive decline in this article. Daily my husband has been getting blueberries with his 4 ounces of Activia yogurt. I get the 24 oz container of Activia and make six portions that include those blueberries. At times I substitute strawberries for the blueberries. Yesterday he ate two of those yogurt/blueberry mixtures from the frig. Last night I served my husband strawberry shortcake, instead of his usual ice cream.

There is a lot to say for super foods. Recently I heard that cooked spinach, tumeric, tomatoes, almonds and dark chocolate are super foods. Now spinach is a hard one to sell on my husband, but I'm going to try to put it into dishes. He gets tumeric in supplements from Vitacost. Tomatoes are easy--salad. I found some almonds with cinnamon that are good snacks for him. When I can I will make his daily coconut fudge with dark chocolate chips--maybe next time I will put almonds in his fudge.

When our loved ones with Alzheimer's get the best nutrition possible, surely this helps their overall health. When they get an infection, or break a bone, I have read, their disease progresses quickly. And, whatever I do for him, also helps his caregiver/spouse--me.

Adrenal Fatigue, Google and the Doctor



Ah, doctor. Google begs to differ!



We are hoping that future generations will not have to deal with Alzheimer's as more information comes to light. The Alzheimer's Reading Room and other sites hold promise for unlocking the mysteries of Alzhreimers.  You can google these discoveries. Tell your doctor about them. I told my husband's doctor about the coconut oil and so far he is not concerned about the extra fat in coconut oil.

When I went to my doctor this week, she was so pleased with my weight loss. P.B. was 122/80 for this 67 year old. Just exercise more, Carol. Today's exercise is gardening--which needs to be done. Hubby didn't want me to go to the gym when we were out this morning.

7 AM today I went to my weekly Weight Watchers meeting where I made a benchmark goal and got to walk the red carpet. I learned what a "Jolie" is as the leader encouraged me to do that on my red carpet walk. When I substituted this week, a student at a middle school where I sub often asked if I had lost weight and I said yes. The class clapped for me.

                                                                            

A few evenings ago,  DH, Sally and Jake and I attended a health workshop at their church. The presenter shared this quote.

75% of the disease prevalent in western society

today are . . . related to the stress mechanisms

of the body. The Standard, Vol., 3, No. 1

I asked questions at the end of the presentation. The doctor agreed that over-dependence on meds and preservatives in our foods can trigger a whole lot of other problems down the road. It is so easy for doctors to just prescribe pills. So I did some Google research on the topic of Adrenal Fatigue.  In turns out that you can have saliva tests to determine your cortisol/DHEA levels during the morning, afternoon, evening and at night.  It is possible to test your cortisol levels and then use a compounding pharmacy to have just the right mimimum prescription for your needs. This way you don't overmedicate.


Without adequate cortisol levels the sleep/rest and recovery cycle is not restored.  We sleep well and restore our CORTISOL levels in the first  hours of the night, and then need four more hours to restore the rest of our functions. Here are two of my Google finds:


Adrenal Fatique in Women
Another DHEA


"One of the main goals of every caregiver should be finding a way to have enough rest. Everything depends on it," writes Gary Leblanc in Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving, Expanded Edition (p. 110)

Here's to a good night sleep, you all!

Is Alzheimer's Hereditary?

Recently Sally and I went to a workshop on Spirituality and Alzheimer’s sponsored by our local Alzheimer’s Association. Jake and DH stayed at our home. I forgot to leave a schedule on the clipboard at home for where we were and when we would be home. Now between our two ALZ husbands, the answer for where we wives were was not contained in their memory. It wasn’t surprising, then, that both of us, forgetting to turn off our cell phones, got phone calls from our hubbies in the middle of the workshop!

At the workshop one of the speakers, a medical doctor, talked about Apolipoprotein E, better known as ApoE 2, ApoEe and ApoE4 and the hereditary connection for those who have that ApoE4 gene.

I researched and found out that 15% of us have ApoE4 in our blood. Furthermore according to this link on “Why ApoE4 Increases Alzheimer’s Risk”:

People who inherit the E4 gene from one parent are three times more likely than average to develop Alzheimer’s; those who get the gene from both parents have a tenfold risk of developing the disease.

 This information came out in April of 2007 in The Journal of Neuroscience and hence the medical community has known this statistic.

There are two types of Alzheimer’s now that have a genetic component—early-onset and late-onset. I first had the impression that only the first one of them is inherited, but they both do. Let me explain.

Early-Onset Alzheimer’s Disease strikes people from age 30 to 60 and in most cases this is inherited and known as FAD (familial Alzheimer’s disease). The AD fact sheet punished here states “A child whose mother or father carries a genetic mutation for FAD has a 50/50 chance of inheriting that mutation. If the mutation is in fact inherited, the child almost surely will develop FAD.”

Late-Onset Alzheimer’s Disease comes after age 60 and over age 85 50% may have dementia. 40 % of people who have that ApoE4 are likely to get Late Onset Alzheimer’s. See link. My husband was 71 when his AD was first diagnosed with 22 out of 30 on his Mini-Mental State Exam; I think it may have been evident when he was 70 but he scored 29 out of 30 at that time. My husband worked for the first six months after this discovery as I reported early in this blog, and is still in stage one of the disease, taking advantage of Exelon and Namenda and coconut oil and everything else I can give him including Ribonucleic Acid, D3 and turmeric.

The causes of Late-Onset are not as predictable and may include a combination of lifestyle, environmental as well as genetic factors. Many countries with different environments and food patterns do not have the epidemic of Alzheimer’s as we have. My husband's parents did not have Alzheimer’s. Researchers with GWAS (genome-wide association study) are discovering other genes that may include a risk for Alzheimer's.

My husband has not only Alzheimer’s but also Vascular Dementia. Heart trouble and diabetes can result in Vascular Dementia, but Vascular Dementia is not inherited. My husband has had a heart attack and also developed type-two diabetes with his heart attack in 2004. Perhaps we can avoid heart disease and late developing diabetes with our lifestyle choices and hence not get Vascular Dementia. This is why I am dieting now and taking measures for my own health. My health will help me continue to be my husband’s caregiver, since no insurance provision can now be purchased for his long-term nursing home care and I will be the one to offer this long-term care.

Epigenetics is a new science. The thought is that certain genes can be switched on or switched off by “environmental factors, such as exercise, diet, chemicals, or smoking, to which an individual may be exposed, even in the womb.” See this Link. One family member may get Alzheimer’s and another may not. My late father had late-developing diabetes and then strokes; his brother, my late uncle, did have both heart trouble and Alzheimer’s. My uncle was probably healthier than his brother, my father, but nonetheless he had some form of dementia at the end.

How does Alzheimer’s spread in the brain? New studies reveal that it is not a virus or bacteria that is spreading Alzheimer's in the brain, but distorted protein know as tau. In an article in The New York Times early this month  the answer came from studies at Columbia and Harvard that “it may be possible to bring Alzheimer’s disease to an abrupt halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau.”   See article.

What should you do? See if you have that ApoE4 gene and take care of your health so basically you don’t switch on or off an inherited disease. New interventions and treatments are coming down the pike and the government is putting more into research for this disease. Maybe you can get in on research for the National Cell Repository for Alzheimer’s Disease by volunteering your DNA. See www.cnrad.org or call 1-800-526-2839. Another tip for young people is be sure you get long-term nursing home insurance before you might be diagnosed with AD because once diagnosed you cannot get that insurance. I have that insurance because I was not diagnosed with AD, but we can't get it for my husband.

How can you manage with these uncertainties? Prayer and waiting on the LORD. This life if not all; God is absolutely there for the patient and the caregiver who fear the LORD.

But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love to deliver them from death and keep them alive in famine. We wait in hope for the LORD; he is our help and our shield. Psalm 33:18-20 NIV Translation

Alzheimer's Disease: What If There Was a Cure?

Earlier in the blog I did review The Coconut Oil Miracle and how it helps diseases. But I have been eagerly waiting for this book at the left to come out for two years. Dr. Mary Newport and I even e-mailed each other about the topic of coconut oil and how it can help someone with Alzheimer's. I read the article she wrote here.  Her husband has Early-Onset Alzheimer's and you have to read their love story. I ordered my copy through Barnes and Noble, but you can get it through Amazon with e-books to follow.

This summer when finances were tight, I wondered if coconut oil was really necessary. When I read her book this month, however, I knew my husband needs to have that coconut oil once again.

• The ketones in coconut oil provide an alternate fuel to keep the brain cells alive. Lots in the book about the science of ketosis.  
• Dr. Mary's husband's energy returned.
• Steve Newport's personality and sense of humor returned.
• His gait or walk returned.
• Coconut oil seems to take the fog away.
• I think all of this is true for DH as well.

There has not been significant clinical testing to determine if it works. People tried to stop Dr. Mary's crusade. She was able to speak in Europe about it, but not in our country. Humm. This is the same thing that our chiropractor said about Ribonucleic Acid and CoQ10 that he recommended my husband take. There aren't studies. But we think these supplements do help.

Dr. Mary recommends a combination of MCT (I get this from Vitacost) and coconut oil (I get from Tropical Traditions).See my links at the side. You can't heat coconut oil over 350 degrees Fahrenheit.  You can use coconut oil from the drug store section at Walmart.

I am just using coconut oil, however, and had trouble lately adapting recipes that my husband would eat.  While coconut oil in oatmeal worked for a time with my husband, he got tired of oatmeal for breakfast.

New recipe. There is a simple recipe in this book that may have helped my husband pass that Alzheimer's driving test for the second year in a row--"Coconut Fudge". Lately I have been serving this to my hubby after I got Newport's book and before he took that driving test last Friday.

Melt  chocolate chips and combine with an equal amount of liquid coconut oil. Freeze in ice cube trays. You can add walnuts and/or shredded coconut before you freeze. When frozen, pop each fudge piece out of tray and refrigerate. This works with my husband. I know it does, and he likes the fudge.

This is not a formal review of Dr. Mary's book, folks, but I just had to get the word out. Is coconut oil a cure for Alzheimer's once someone has it?  Probably not, but coconut oil may help prevent health problems in general and improve the quality of life for the dementia patient.

This is good news!

Turmeric Coconut Oil Toasted Cheese Sandwiches

There has got to be compensation for short-term memory. See Brain Cell Compensation . I do think my husband uses other parts of the brain to help him even if there are less neurons and neurotransmitters in his hyippocampus. When something is significant, he seems to compensate. Yesterday he had an appointment with a demotologist and today he was talking about his possible skin cancer. He also takes a lot of notes. While I worked today outside the home he got some energy up and cleaned our bathroom floors and mowed the lawn. I am so proud of him.

I am standing by coconut oil. It has so many benefits. I have written about it here since the summer of 2009. But I now am adding the spice of turmeric.

On the Alzheimer's Reading Room Vit. D3 and Tumeric:

UCLA researchers have identified a new biomarker that could help them track how effectively the immune system is able to clear the brain of amyloid beta, which forms the plaques considered one of the hallmarks of Alzheimer's disease. Scientists ID possible biomarker to gauge Alzheimer's prognosis, effect of therapies

The pilot study, currently published online in the Journal of Alzheimer's Disease, demonstrates how the immune gene MGAT3, which is essential in clearing amyloid beta, is expressed differently in different Alzheimer's patients. The finding may be useful in providing more highly individualized disease prognoses in the future.

It may also help researchers understand which patients will respond to therapy with vitamin D3 and curcumin, a chemical found in turmeric spice, both of which were shown in previous studies by this UCLA research team to help stimulate specific immune system cells to clear amyloid beta in a laboratory test.

From India, curmunin from Tumeric "demonstrates neuroprotective action in Alzheimer's disease" and other illnesses.

Now I can't get my husband to like fish or fish oil. More from the Alzheimer's Reading Room on Fish Oil He does take flax seed oil tablets which also contain omerga-3. I asked his primary care physician about D3, but we didn't persue this strategy at this time.

One can get turmeric as a spice. I put it in dishes now. Here is my simple recipe for toasted cheese sandwiches:

Put coconut oil on the outside of bread sandwiches and place them in a sandwich maker. I have had my Snakmaster for maybe twenty years. On the inside sprinkle turmeric as shown at the right.


Then place two slices of cheese on each sandwich. Close the lid for about four minues. My husband loves these sandwiches and he gets both coconut oil and tumeric!

I serve these sandwiches  with  a "parfait" I make from  Activia, blue berries and Kashi cereal for the crumbles.

Living In the Moment: Highlights from "Think About It" Conference

Reagan by
Artist

Today while we were looking at booths at the conference artist Toni Trotti painted someone upside down and when he finished it, he turned it so you could see who it was! I blogged about him here on February 6th.

Dr. Arny Bush, from USF, spoke on "So What Is Dementia Anyway". She covered many terms simply and visually. I learned that with Early-Onset dementia (before age 65) the decline can be fast, whereas the older patient can have a slower decline especially if they early receive medicine such as Exelon/Aricept and Namenda as my husband has. At some point these medicines might not matterl. Early Stage such as my husband and Jake have shows functional impairment:

• Difficulty organizing and expressing thoughts (DH or Jake do not seem to have this although we have difficulty expressing things to them simply.)
• Memory loss of recent events (However my husband does remember the crash and our camper. His photo albums on Facebook help him with recent events also.)
• Difficulty with problem solving (DH shows no interest now in carpentry and the last thing he made, a bird feeder, seemed complicated to him.) 
• Difficulty with complex tasks. (His long-term memory helps him still, but he no longer wishes to handle our finances which he turned over to me when I retired from full-time school teaching.)
• Getting lost or misplacing belongings. (Keys, cell phones, yes. Getting lost--no. He used a GPS when we had two cars up until two months ago.)
• Personality changes. (Some days he shows Sundowner's Syndrome and gets very upset. So far I am the only one that has witnessed this.) 

Dr. Bush concluded with what she observes 1) "unconditional love" of the caregivers and 2) "living in the moment" of the patients. I have been so concerned with being proactive, that at times I do not enjoy my husband's humor and each day. I need to focus more on each moment and live in the moment.

Dr. Megan Janke, also from USF,  spoke about "Leisure Activities as a Means of Connection and Stimulation". I feel so good about going camping now with my husband--wonderful for DH and myself and also to share this connection with Sally and Jake. Leisure benefits the caregiver as well. Dr. Janke also passed out 101 Things to Do With a Person With Alzheimer's and I also found in on line here when I came home.

Brad Beatty spoke on stress management. Accept the new normal he said. He wisely told us to bring meaning to the situation and do not ask why but to what ends.

Cudos to Stephanie Thompson of the Florida Gulf Coast Chapter of the Alzheimer's Association and her volunteers for putting on such an outstanding conference for us caregivers for free.

Recent Research

Going to try to implement walking with husband. Sally and Jake, DH and I will try it on Saturdays Walking and Alzheimer's This way Jake and DH can walk at their own pace and Sally and I can talk and walk more briskly. We know the socialization is good for our husbands and wonder when they will figure out that each other has Alzheimer's. So far they accept each other's stories being repeated, because they don't remember those stories.

New York Times says to give Alzheimer's patients their way:

Techniques include using food, scheduling, art, music and exercise to generate positive emotions; engaging patients in activities that salvage fragments of their skills; and helping caregivers be more accepting and competent.

I agree to give DH his way on most things. I put my foot down if he refuses to go to the doctor. He has long-term excellent habits. For example, he folds his own laundry and makes our bed since I usually am up first.

Rockerfeller University  say that Vascular Dementia and Alzheimer's are more related than we previously thought according to the UTube Video. My husband has both--wonder how many others have both.

NAPA has been signed by Obama. We will see how effective this new law is, but it certainly is timely.

Our chiropractor has suggestions on supplements for memory to aid to the coconut oil. Will try one at a time. Not sure there is a cure for Alzheimer's, but brain circulation is improved certainly with these visits and we are getting slowly better after our crash of December 19th. DH will talk about his back hurting and I remind him of that event, because the crash is foggy to him.

Saga Six

So both "Jake" and DH have had birthdays recently. Both are 73! Both couples were going to go to Disneyland's Magic Kingdom in Orlando this week, but it is just too cold here in Florida. My wise husband suggested we postpone it. I love having the day off and so does "Sally". We enjoyed having a birthday breakfast with "Sally and Jake" two weeks ago to celebrate Jake's birthday. We celebrated DH's b.d. with a cake after church yesterday.

The Memory Walk I participated in last month has raised $61,000 plus.

The diabetic medicine Metformin can help prevent dementia according to Alzheimer's Weekly and more tests are being conducted to confirm this. My husband takes Metformin and we now get it free at Publix.

Geriatric Care Manager Carole Larkin of Dallas Texas writes on the Importance of Socialization in The Alzheimer's Reading Room. This has made such a difference for me when I realized this. Before that I had been withdrawing slowly from my husband. He is so much happier when we just act like a normal couple. Love him!

Socialization is easier to accomplish than exercise, however. Sally and I have a plan to go walking in January around a track and then DH and Jake can walk together also and stop when they want to. Hope January has mild days when our husbands will agree to walk.

Caregivers have 6 simple suggestions at Johns Hopkins Health Alerts. We have covered these tips in a different format on this blog, but the tip I have been neglecting is my health. I realize that when we are older we forget to get enough liquids--I haven't been getting enough water. Then I wake up in the middle of the night with leg cramps because I didn't get enough water, or the liquid I consumed was mainly coffee. So I got sick last week and am still taking antibiotics for the respiratory infection. Urgent Care gave me prescriptions for four medicines recently (antibiotics, strong pain, cough and alergies,) and two of them made me vomit. Never got the allergies meds as the helpful drugist at Walmart suggested I could get an over the counter med if I determined I needed it. In my 66 years I have never been diagnoised for allergies, however, but you never know! I am just taking the antibotics now.

Dr. Charles DeCarli, Neurologist/ Alzheimer's Director at the University of California at  Davis has an informative  Update on Vascular Dementia. Now this hour long video is informative if you are a doctor. :)  I tried to follow it, but had difficulty. As a layman I received two insights from it, however. 1) People start out with Vascular Dementia and end up with Alzheimer's. He pictures a landscape rectangle with a diagonal line to illustrate the concept with mainly V. Dem. on the left for an earlier age growing to mainly ALZ on the right for maybe ten years later. 2) V. Dem. patients have trouble with sequential directions, like how to use the remote control, etc. Yep, true of my husband, but he has been trained to use them, regresses, and then gets up to speed again. He loves using his GPS, but needs help inputting a new address. I say train and retrain them while they can learn.

Soy may not be as good for you as we thought. A report from Dr. Mercola:

Myth: Phytoestrogens in soy foods can enhance mental ability.
Truth: A recent study found that women with the highest levels of estrogen in their blood had the lowest levels of cognitive function; In Japanese Americans tofu consumption in mid-life is associated with the occurrence of Alzheimer's disease in later life.

Time Magazine on Alzheimer's

The October 25, 2010 issue of Time. The picture on the cover shows the visible deterioration of the mind. Alice Park writes in the lead article, "Hope in Darkness", the following:

• Alzheimer's disease is  "the degenerative brain condition that is not content to kill its victims without first snuffing out their essence."
• Research funds are lacking. Dr. Ronald Peterson of May Clinic is quoted:

We spend $5.6 billion a year funding cancer studies, $1 billion a year for heart disease . . . and $500 million to study Alzheimer's. Yet what is going to get most of us in the next few years is Alzheimer's.

• Park says about the new research, "Who in his right mind would want to know he had a disease that would inevitably rob him of that mind?" Yet Park writes: "Experts are now convinced that it's crucial to treat Alzheimer's patients as early as possible, perhaps even before they show signs of memory loss or cognitive decline, rather than attempt to improve a brain already scourged by the disease."
• Brain scans now are better. Amyloid patterns can be detected that previously only could be confirmed in autopsies. Perhaps this is why the USF Byrd Institute could make my husband's diagnosis recently.
• Park concludes "living robustly and well is one of the best weapons we have against the disease--at least until science's heavier artillery is finally ready to be wheeled into place."

Patti Davis writes also in this Time issue that we have to learn the lesson of acceptance rather than asking why. She points out that "men tend to back away in discomfort. Woman, on the other hand, inhabit the experience fully, with its sorrows, its calm stretches, its dramatic explosions and even its humorous moments." Yes, Patti, that describes this blog. Also I know of fewer men than women who blog about the experience also.

The last essay in Time is written by Nancy Gibbs. She points out that "Medicare does not cover basic long-term care, and you have to burn through your savings to qualify for Medicaid." For people still working you can sign up for care in January with the new health care bill and be vested after five years--at only $50 a day--totally inadequate. There is nothing that can be done for us senior citizens in that new bill it appears.  

Meanwhile, as I finished reading Time,  an e-mail came in. Heavy smoking appears to be a factor in Alzheimer's and dementia according to a report from the Alzheimer's Reading Room. Post on Heavy Smoking.  A link to that reading room where you can subscribe or read regularly is on the right of this blog.

Saga Two

This week James finished the recessed lighting in the family room where my husband watches so many old movies. That bright light is essential to help with Syndowner's. The picture at the left doesn't do justice to the real change in lighting in that room.



"This is the last time you take me to a doctor," proclaimed DH, as he drove us to an endocrinologist this week. Yes he can drive now. I was glad because while he drove I was writing down all his prescriptions, Centrum Silver, Flaxseed Oil, Vitamin B12 and the Ecotrin full strength aspirin he now takes instead of expensive Plavix. I didn't want to cart all those bottles in to the doctor.

We didn't know why he needed to see the endocrinologist, but found out why when we got to Watson Clinic in Lakeland. His calcium levels were elevated and that could mean surgery on a gland or kidney stones.  He collected urine for 24 hours and did a great job of remembering to do this even while I was gone. Shortly he will take a bone density test also to see if calcium is not getting to his bones and if he has thin bones.

A researcher interviewied me about coconut oil and the benefit to my husband. I pointed out DH's passing his driver's test at an ALZ clinic and also the fact that Byrd Institute said that they didn't think he should be dressing himself now based on his MRI. Yes, indeed, coconut oil is helping DH.

Sally, Jake, DH and I traveled to Disney's Epcot in Orlando this week. In celebration of passing of the driving test I actually enjoyed my husband driving the four of us to Orlando.  I wanted to drive his SUV, but he said it makes him feel like a man to be the driver. He really is a safe driver. On the return trip, however, DH was happy to have me drive. Again we got in free due to the generosity of some friends. Jake and DH got better acquainted during the day as did Sally and I.

How wonderful it is for me to have Sally to share the journey of husbands having Alzheimer's. We commented that the men may be about the same stage of Alzheimer's, although we do know that this disease takes different forms with different men. We also noted that they both husband's need organizational skills of their wives to complete projects--my husband to weed and Jake to paint a fence. During the day at Epcot we had plenty of opportunity to observe the interaction of our husbands who are enjoying forming a friendship as are Sally and I. Sally had read my book and so knows all about me and I was able to ask her getting-acquainted questions also. What a gift from the LORD this couple relationship is turning out to be!