Battling For Health

Last week I talked about how to know if it’s Alzheimer’s disease and I ended the segment on Thursday with a discussion about stages one and two.  I promised that, for this week, I’d finish up the stages.

I thought it would be most helpful for you if I not only describe the stages, but also provide some information as to how, you as a caregiver, might prepare and respond in a particular stage. After all, as a caregiver, you want to know what is coming and how to deal with it.

Let’s just review quickly.  You can click on the link, Stages of Alzheimer’s-Caregiver’s Response to get more complete information.  But for now, you may remember that Stage one is really not a stage of Alzheimer’s, but rather a stage when no symptoms are present. Stage two there is very mild decline that may not be noticeable, except by the most astute observer.

For today, let’s talk about Stages three and four:

Stage 3-This is the stage where memory issues become much more obvious.  Even the friends and family members begin to notice changes.  The person may find it difficult to remember names, especially of people he or she hasn’t known for a long time.  If your loved one is still working or is involved in social activities like card playing, etc. associates may begin to notice that performance on the job or mental acuity in social settings is slipping.  You may also notice that planning or organizing tasks become more difficult.  Balancing the checkbook or following a recipe may take longer than before and may cause frustration.  Medical evaluation may or may not be able to confirm with a  high percentage of accuracy if the person has Alzheimer’s disease at this juncture.

Stage 4-I mentioned in an earlier post that although there are seven individual stages, the disease is also broken into larger categories.  This stage falls into the mild or early stage Alzheimer’s disease category.  It is characterized by obvious memory loss regarding current events and personal information, such as address, phone number and names of close family members.  By this stage, it’s tough for the affected person to plan a dinner party, pay bills, balance checkbook and keep tabs on person al finances. At this point, decline is obvious enough that friends and family members are sure that something is awry. Often, the disease can be diagnosed with a fairly high level of surety by this point.

Caregiver Response-At this stage in the game, as a caregiver, you need to swing into action.  If your loved one has not yet been evaluated; then make a doctor’s appointment and get that done right away.  You should also consider who will become the primary caregiver(s).  Getting Power of Attorney is very important so that you or someone is able to make important decisions on behalf of your loved one. Be sure to include health care responsibilities as well.  You will also want to have conversations with your loved one about taking over the finances, paying bills, etc.  Depending on the amount of assets your loved one has, you’ll want to see an elder law attorney to see how best to proceed to protect the assets of your loved one.  If your loved one will be on Medicare then you’ll need to complete the paperwork to get that process started.  In short, this is the time you will put systems in place to help you as the disease progresses.  Most of all though, try to understand how scary this is for your family member.  They have been living with the signs and not fully understanding what is happening for a long time now. Let them know that you will be there to help and support in any way you can. Allow them to express frustration and don’t take it personally.

Tomorrow, I’ll discuss stages five and six.

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Which of these is your hospital nurse?

Is it Nurse Ratched

of One Flew Over the Cuckoo’s Nest?

Carol Hathaway from E.R maybe?

Or possibly Poppy Pomfrey from Harry Potter?

Sorry. The answer is none of the above.

Unfortunately for better or worse, the media shapes our perceptions of the nursing profession.

What’s the anatomy of a real nurse?

According the Center for Nursing Advocacy, this is nursing:

“Nurses save and improve lives as front line members of the health care delivery team. They independently assess and monitor patients, and taking a holistic approach, determine what patients need to attain and preserve their health. Nurses then provide care and, if needed, alert other health care professionals to assist. For instance, emergency department nurses triage all incoming patients, deciding which are the sickest and in what order they require the attention of other health care professionals. Thus, nurses coordinate care delivery by physicians, nurse practitioners, social workers, physical therapists and others. Nurses assess whether care is successful. If not, they create a different plan of action.”

Her Education:

Today’s nurse has either a certification, a three year diploma, an associate’s degree, a bachelor’s degree, master’s degree, or possibly your nurse has a doctorate of nursing.

An L.P.N. or L.V.N. is a licensed practical nurse or licensed vocational nurse. The programs are usually a year long and this nurse works under the supervision of an R.N. or a physician usually.

The R.N., registered nurse, has at minimum an associate’s Degree (ADN) from an accredited college or university or a bachelor’s degree. For a long time the ADN was considered the technical bedside R.N. while the BSN was considered the ‘professional’ R.N. or supervisory R.N. This viewpoint varies from state to state and facility to facility. The three year diploma programs are disappearing but before 1970 there were over 800 of these programs in the United States.

After passing the N.C.LEX, (National Certification Licensing Exam) an R.N. in the U.S. may elect to pursue other certifications requiring further studies and testing.

Your R.N. on an oncology unit may be O.C.N., or oncology certified.

A Day in the Life:

Shift work is the reality of hospital nursing. Whether it be 7 to 3 shift, 3 to 11 shift or 11 to 7 shift.

Innovative hospitals, like other workplaces, set up varying schedules to entice nurses and to ensure retention. The weekend option is a common feature. Perhaps two 12 hours shifts and an 8 hour shift or other varieties. Some facilities allow job sharing. The hierarchy in nursing, like most jobs, rotates around seniority and education.

Generally the day shift is the only shift that has a supervisor on the unit. So if you have complaints save it for the day shift. The swing shift and graveyards usually have an assigned R.N. in charge and a supervisor who floats through the hospital.

Shift change is a unique animal, handled differently at every facility. This is the changing of the guards. At some facilities the nurses hand off their patients and information face-to-face, while nurse aides monitor the hospital unit. At other facilities ‘report’ is done via a tape recorder and the oncoming nurses come in a little earlier for the overlap.

Word to the wise. Shift change is an important and busy time as information about your care is shared between shifts. If you have a request that only your R.N. can handle, such as pain medications, avoid asking for it at shift change time.

Why She Is Your BFF:

The physicians of Grey’s Anatomy would have you believe the doctor, intern or resident is there at bedside monitoring the patient’s every need. Give me a break. They might also suggest by the clever scripts and witty repartee that nurses are merely handmaidens to those oh so smart and handsome doctors. A sad commentary isn’t it?

The reality is nurses and physicians together are a partnership of professionals each bringing their own skills and expertise to the table. The goal is the most effective plan of care for the patient.

Your nurse is your BFF. Your best friend forever, whether you like her or not. She is the one who will notice during her frequent rounds those imperceptible changes in your condition–that your skin has become pale, your breathing is shallow or your catheter is kinked. While you sleep she is checking your lab results, reading the doctor’s notes and verifying that every area of your care has been carried out and she is evaluating that plan of care.

She is your first line of defense. When the resident doesn’t answer his in-house pager at one a.m., your nurse will harass him until he wakes up. When the doctor on-call says nothing is wrong, she will pressure him, if she is believes there is an issue to address. And when that newbie intern doesn’t know which medication to order for your nausea, your nurse will tactfully suggest one.

Nurses are professionals and nursing is a profession and a calling.

The next time your nurse wakes you at midnight for vital signs, at two a.m for medications and at four a.m. for lab work and you want to throw your water pitcher at her, instead, remember she came to work at ten p.m. because she wants to be part of the team that provides you with the best care possible as you battle cancer.

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Everyone loves free samples of products. I’ve collected samples just for people with diabetes! If you find a link that is broken or a site no longer offering free samples, please leave me a comment and I’ll repair or replace the link. The links have been left intact so you can cut in paste just in case you use a browser that cannot see clickables.

Do you know of samples not listed? Please submit them in the comments. I will make a page devoted to free samples just for diabetics, too. Keep an eye out for a new page, as I will be contacting companies to ask for free samples just for Battling Diabetes readers!

Skin Cream

Diabeti-Derm - www.diabeticproducts.com/pages/about_sample.asp
Gilden Tree- www.gildentree.com/nourishing_foot_cream_challenge.php

Wound Care

StaphaSeptic from Tec Labs- www.teclabsinc.com/begin_survey.cfm?surveyid=004EE0C7-CD24-0434-17AAF14C1CDD2AAB

General Health

AZO Yeast Pills-
www.azoproducts.com/about/azo_sample

Diabetes Outlook Package/Bag- www.azoproducts.com/about/azo_sample
Diabetes Publications and newsletters- diabeticgourmet.com/subscribe/

Nutrition

GlucoBurst Gel- www.glucoburst.com/free_sample.aspx
Bclear Drink- www.bclearusa.com/contest/
Free Snack- www.splendiddelites.com/Free_sample.htm
Stevia-$1 shipping to US- www.nunaturals.com/contact/trial_stevia_packets.html

Jewelry

Free Diabetes Alert Necklace- www.diabeteswellnessnetwork.com/offers/FreeInfoTag.html

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You may be like I was. Too trusting.

In 2004, I found a golf-ball sized lump under the skin on my torso — just to the right of where my stomach is.

It really scared me …. so off I went to my family doctor who seemed perplexed, too. He sent me to a surgeon who removed that lump. It was no more of a hassle than having a tooth pulled, or getting stitches in your leg. Eight stitches later, home I went.

When I heard two weeks later that I had been diagnosed with a rare, aggressive and deadly form of lymphoma, I was completely blown away. Over the course of the next three months, I went from my very trusting, very reliant, relationship with my doctors, to my complete lack of distrust for the American healthcare system. Please note, that doesn’t say I distrust all the people who are part of it. No — it means that what I learned was that the system is set up to fail patients and it fails them every day.

It turns out that my diagnosis with a fatal form of lymphoma was, instead, a misdiagnosis. I had no cancer. Whatever I did have was gone — and it has never recurred. I have never had treatment. I have never seen another lump.

I went from being told I would be dead within months, to finding out I was as healthy as any other mid-50s age woman who has only been moderately “good” about preventive and healthy habits throughout her lifetime.

The hurdles to getting the right answers, the right treatment, and a longer, healthier life are many. Misdiagnosis is just one of them. Lack of diagnosis, bad treatment recommendations, errors in test result reporting, drug errors, patient safety including surgical errors, and of course, problems with insurance reimbursements or any other payment problems are all hurdles to getting good care.

My husband will tell you I have gone from being a Healthcare Pollyanna to the development of what we call my “cynical crust.”

As it turns out, however, that cynical crust serves me well. It makes me keep asking questions — always a good thing — and it helps me develop advice for those of you who read my blogs, columns, etc.

There will be times we have to trust — but we need to trust wisely. If we develop a sense of trust knowing what the possible problems are, then we know when it’s time to begin questioning our care.

We may not have those many years of medical school behind us, but we patients know our bodies better than anyone else does. That knowledge, combined with intuition and common sense, will help us overcome those healthcare hurdles that might otherwise prevent us from getting the care we need.

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An Update from the folks at Seventy K: If you live in California Check This Out!

Seventy K is a new campaign to raise awareness about the lack of rights that adolescent and young adult cancer (AYA) patients, those ages 15 to 39, have in the organized medical world. AYA patients, especially those in the younger end of the spectrum, tend to fall through the cracks of being considered either a pediatric or adult cancer patient, and sometimes face gaps in services and treatments. Developed by Dr. Leonard Sender, an AYA Cancer specialist, the SeventyK project includes an AYA-specific Bill of Rights which will ensure that adolescent and young adult cancer patients have adequate and specific treatment programs, similar to those developed for young children and adult cancer patients.

In addition, Dr. Sender, who works at the Children’s Hospital of Orange County and at the University of California -Irvine Medical Center, will be speaking at a special free event coming up.

When: Saturday April 12, 2008 from 5-8pm

Where: Dave and Buster’s
20 City Blvd., West Bldg. G, Suite 1 Orange, CA 92686

RSVP: Reserve your space by April 4th by calling 714-289-4735 or emailing gsanchez@choc.org

CRAZY SEXY CANCER BOOT CAMP, April 18-20, 2008. The Crossings, Austin, Texas. Speakers: Kris Carr, Terri Cole, Peter Gold, Anne Gourley.

“Learn how to successfully navigate the road to recovery as you refuse to let yourself be defined by cancer.”

From the Headlines:

Red Wine Can Kill Cancer Cells: A natural anti-oxidant in grape skins and red wine can help kill cancer cells in the pancreas by crippling the cells’ core energy source, says a new study. (Economic Times, March 27, 2008)

‘World Wide Web of Cancer Research’ exploits human genome map: Research grid could lead to improved drug research and safer clinical trials for cancer patients–and soon for other diseases. (Computerworld, March 26, 2008)

Cancer warning: Please adjust your screening. An ad campaign about colorectal cancer wants Ontarians to get with the program (Ottowa Citizen, March 25, 2008)

MRI Can Be Predictor of Post-Treatment Prostate Cancer Spread-Those having radiation therapy may want to request more aggressive therapy, study finds. (U.S. News & World Report, March 25, 2008)

Amrubicin(R) Receives FDA Orphan Drug Designation For The Treatment Of Small Cell Lung Cancer -(Business Wire, March 25, 2008)

St. Jude study offers new hope for children with kidney tumors deemed inoperable: (Cancernews.com/St. Jude’s Children’s Research Hospital, March 24, 2008)

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If you are like most caregivers who are battling Alzheimer’s disease, you are so tired that the very thought of driving to a gym, waking early to exercise, or taking time to put in an exercise tape stresses you and makes you feel even more tired and burned out.  But I promise you this - if you exercise 30 to 60 minutes per day, especially if you can manage to get outside and catch some fresh air and sunshine, you will feel much less stressed and more energized.

Exercise has numerous benefits, here are three:

Exercise improves mental sharpness, in part, due to the increased oxygen to the brain.  Some studies have even shown that those who exercise have sharper minds, faster reaction time and better memory than those who don’t exercise.

Exercise reduces stress-not that you have stress as a caregiver, but on the outside chance that you do, exercise will really help.  I recall feeling as if my head was going to explode.  I wanted to punch, kick, and scream simultaneously.  A brisk walk always helped me to put things in perspective and burn off some of that negative energy.

Exercise increases energy-I know you are tired, very tired.  Exercise will help you to feel energized. Yes, you get tired after a good aerobic workout, but it’s a “good tired.”

You know the benefits, here’s how to squeeze it in to your already hectic life

Make exercise a priority!  You are no good to your loved one if you are tired, sluggish and empty.

Take small steps.  Instead of circling the mall or grocery store parking lot for the closest space, intentionally park further away and w-a-l-k.

Make exercise a priority!  Tell your friends and family members of your desire AND plan to exercise.  Ask them to hold you accountable and check in on your progress from time to time.

Ask for help.  Your job is often 24/7.  Ask for some help so that you can get out, breathe some fresh air, and get your heart rate up a little.

Make exercise a priority!  Take the stairs instead of the elevator

Walking is certainly the least expensive and most convenient exercise, but if it doesn’t appeal to you consider the following:

Swimming - It’s easy on the joints, and provides an awesome head to toe workout.

Organized Class - Aerobics, water aerobics, dance, kickboxing and martial arts all will give you a great aerobic workout and help you to relieve tons of stress.

No matter what you do, GET MOVING.  Make exercise a priority!  Find something you enjoy and get out and exercise.  The benefits far outweigh the costs in time and money!

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Lunch with friends. And you DO NOT want the topic of conversation every single week to be YOUR cancer. And even if you wanted the world to rotate around YOU– because hello, let’s get real, most days your mortality is more important to you than your friend’s dishing of professional workplace dirt–often your friends try as they may, don’t always GET IT.

Who does get it? Someone who has been there. Someone who IS THERE RIGHT NOW.

Which is why a social community is such a great source of support, information and yes, FUN.

Some communities remain chat rooms and bulletin boards, while others have evolved into true multi-feature dynamic communities.

General Requisites for Most Social Communities:

• Create a password
• Submit your email address
• Choose a user name-your name in the community
• Decide how much or how little about yourself you want to share
• Picture time-your smiling face or not

Stumbling along in the user community I’ve discovered a few things that are helpful.

Use an alternative email address for your community messages. It’s much easier and tidier to keep all facets of your world separate.

Do share about yourself. Chances are there is someone out there who does get you, right where you are in your journey. Cancer battlers have more things in common than you might think.

Visit often and comment. You are an important part of the community.

Put up a picture. It makes everything more personal. Or how about an avatar?

Places to get an avatar:

Yahoo Avatars

Meez

Many social communities also give you free, create your own blog options and/or create your own page options.

The best way to find your way around these communities is to just, (sorry) DO IT.

Wander around, make friends, invite friends and remember, when all else fails, try the HELP icon.

Great Online Communities for Cancer:

My Crazy Sexy Life, author Kris Carr’s site. I love this site and if you visit stop by and say hi to me.

My Planet Cancer. This site has so much going on you will keep going back to check it all out.

BreastCancer.org provides chat and bulletin board options.

Teens Living With Cancer, a project that keeps growing.

The Cancer Compass Message Boards cover many types of cancers.

OncoChat, cancer support on the internet.

The American Cancer Society’s virtual community is a vast network of many cancer topics.

Susan G.Komen For the Cure, Message Boards.

Facebook, a social utility connects groups of people. You must join first and then search for communities OR create your own.

Have an online community you’d like to share? A message board you’ve found helpful? Be sure to send a link in the comments and I’ll feature it in the Friday News.

A final word. This is the internet and you should always follow safe guidelines. There are posers out there.

For more information on safety on the internet: National Cyber Security Alliance.

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This post discusses Alzheimer’s Disease Stages One and Two 

I promised that I’d talk about stages, and in the meantime, I got a GREAT idea that I believe will be quite beneficial.  You and I both know that there are numerous places that you can get information about the STAGES of Alzheimer’s disease. As a caregiver, I really wanted to understand what was coming next, so those sites and resources definitely filled that need.  As time went on, though, I discovered that as much as I needed to understand the stage and what was coming next, I needed to know what that meant for me as a caregiver.  I wanted answers to questions such as, how would my role change as the stages progressed?  As my mom’s need for care increased, were there organizations I could look to for help with daily activities?  At what point should we consider adult day care and would there be a time that she would  no longer be ”eligible” for adult day care?  What is assisted living and is it realistic for us to consider an Alzheimer’s care facility? Does everyone with Alzheimer’s eventually become incontinent?

So, what I propose to do is not just share the stages with you, but also help you to be prepared and armed to battle Alzheimer’s disease from stage one to stage seven.  The format will be as follows, I’ll describe the stage, provide links for more information and then give you pertinent information regarding your role as a caregiver. 

Today, let’s take a look at stages one and two.

Stage 1 is really a misnomer in the sense that it refers to a normal individual who has no memory issues.  I am not sure who fits into this category, certainly not those of us who are parents of toddlers and/or teens.  On a serious note, though, this is not a stage of disease, rather it is the stage BEFORE the disease.

Stage 2–Person has very mild decline that appears as a slight, but increasing lapse of memory; such as frequently misplacing keys and glasses.  The extremely close and observant friend or family member may notice.  At this stage, its easily shrugged off as stress, “senior moments,” or just plain old age.

Caregiver Response–At this stage there is usually not a “caregiver” per se, unless there is some other medical condition that requires it.  In most cases others are not aware that there is a problem.  The affected individual may feel something is wrong and either be adept at hiding it or just not able to pinpoint the problem.

Although there are seven stages, they are often broken into four larger categories such as mild or early stage, moderate or mid-stage, moderately severe or mid-stage and severe or late stage Alzheimer’s disease.

In the coming week, I’ll describe the remaining stages and provide a Caregiver Response for each stage, so that you will know what’s coming, how to prepare and how to respond so that you can provide the best care for your loved one.

In the meantime…Penny for your thoughts? Please feel free to comment specifically on this post, ask a general question or contact me privately at http://alzheimer.battlingforhealth.com/contact

Coming up tomorrow–Caregivers Corner

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No Sugar Is Best?

For nearly all of the 20th century most people believed that to control their diabetes they had to avoid sugar completely. Sugar free candy, cookies, cakes, and other foods became the staple treat for diabetics all over the world. If you wanted to buy your sweetheart something for Valentine’s Day (or any holiday) you just looked for sugar-free chocolate.

The only problem with this is that diabetics were still having problems controlling their blood glucose levels. Even without their dreaded arch-nemesis, sugar, diabetics were (and still are) having high and low swings. Many were and are not able to figure it out. What were/are they doing wrong?

Food Raises Glucose Levels Higher

Back in 1994 a discovery that the foods you eat can raise blood glucose levels higher than sugar surprised many. This is one reason your doctor may warn you to avoid starches. The amount of carbohydrates in certain starchy foods can dramatically raise blood glucose levels. For example, normal white sugar has a GI (glycemic index) of 92 whereas white bread has a GI of 100, meaning the bread will cause a rise in blood glucose faster than sugar!

The Fat Factor

Another problem with sugar free diabetics foods is that they provide a false sense of security. You may believe that it is safe to consume more of a snack if it is sugar free. This is far from reality, though. Sugar free foods can contain more calories and fat than traditional ’sugared’ foods. Due to insulin and other medications causing a resistance to weight loss in some diabetics, adding extra fat in a diet can be extremely detrimental to keeping a healthy base weight.

So, What Do I Eat?

The good news? Pretty much anything you’d like, in moderation. Popular fad diets advocate high protein/low carbohydrates. The honest truth is that these diets will work. But, in a diabetic, the results can be weight loss plus a serious loss of health. Too much protein can put the body into ketosis which can be deadly for a diabetic.

Avoiding foods entirely can make you crave them more. Instead of avoiding a particular food or food group, allow yourself to enjoy it in smaller amounts. Be aware of what causes your blood glucose to rise and adjust your daily diet accordingly. Had a baked potato with your steak? Then skip the pie (or other dessert). Love steamed cauliflower? Just halve that brownie you want with a friend or your kid.

Remember to speak with your doctor before making any diet changes!

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That’s a question that is asked of me frequently…. out of all the topics relating to empowering patients to take charge of their own healthcare, what would be the most important piece of advice I could give them?

The answer is easy: never stop asking questions.

You accomplish so much if you just keep asking them. Here are some of the ways:

1. If you keep asking questions of yourself, you will keep yourself engaged. Does my arm really ache more today than it did yesterday? Am I prepared enough for my doctor’s appointment? Did I remember to take my pills this morning?

2. If you keep asking questions of your doctor, at least three things will happen. First, your doctor will learn how engaged you are in the process of getting back to ‘well’. Second, your doctor will respect you because you are so engaged. Third, you will be confirming what your doctor says and does, which will keep him/her from making mistakes (or at least will cut down on the number of mistakes that could be made.)

3. If you keep asking questions during research about a medical problem you are having, you will be more empowered through learning about your problem. Understanding why something went wrong in your body, or understanding how it happened, and understanding the possibilities of how it can get fixed and why that might work will go a long way toward helping your health to improve.

4. Confusion gets in the way of getting healthy. If your doctor uses words you don’t understand, then ask their meaning. If the doctor or one of her staff members tells you to go for a test, and you don’t understand why you need that test and/or what it will (or won’t) prove, then ask. If there is a charge on your bill that you don’t understand, ask. Don’t allow confusion to make you feel worse than you already do.

Continually asking questions will help you feel like you are taking command of your health challenge. And taking command is one way of feeling empowered. When you think you’ve asked all the questions you have, ask one more!

Wise patients know that their questioning will go a long way toward helping them find their best medical outcomes.

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