Sunday, February 7, 2016

New Bookstore and New Workshop

This week, I'm using our blog to share information about a new feature here and about an upcoming workshop.

The new feature is a link to our new LBD Bookstore. You can find a link to it at the top of the Right Panel. Do check it out. Feel free to make suggestions for additions as well. Eventually, the one on LBDtools.com will be like this one as well, but changes take time. In the meantime, use this one. It is much more current.

The flier below tells about the workshop we are co-sponsoring. We are excited and know it will be both educational and fun to attend. If you live in the area, do check it out! For more information and to register, go to HealingThings.com. This time it is is local, but even if you don't live in Arizona, let me know if it sounds like something you'd like to attend. We'll be doing them again, I'm sure, and next time we plan to make it a two day affair.


For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.


Sunday, January 31, 2016

When Your Insurance Claim is Denied

A recent Facebook post triggered this blog. "Wow!"  I thought,"That's really helpful. I'll write a blog about that." But then I researched it and found that it falls into the category of "If it sounds too good to be true, it probably is." Called "Medical Hack," it tells readers who have been denied an insurance claim to call the insurance company, ask for their HIPAA Compliance/Privacy Officer, and demand the names and credentials of all the people accessing your record to make the denial. It goes on to say that almost always, the insurance company to reverse their decision because they don't want the government agencies, or you, to know that non-medical, high school level people are making these decisions. Sounds easy, huh? Well, don't be fooled. Go to Snopes.com and see how they found the post to be mostly bogus.

That said, most of us have had an  insurance claims denied. With the medical concerns connected to LBD, and the confusion around what the disorder can cause, it is something LBD caregivers should be prepared for. Forbes.com provides a well documented, list of things to do about claim denials, things that are more likely to bring results than the above "Medical Hack."

1. Start by making sure the claim is correct:
  • Know your insurance's limitations. If it covers the procedure only in certain instances, does your situation fit? Can you or your doctor make it fit? Wording makes a difference.
  • Get the authorization. Most insurances require a heads up prior to the procedure. Make sure your doctor does this.
  • Show objective evidence of need. Know if there are tests or procedures that need to be done to prove the need for this procedure. The doctor will usually tell you, but ask if this doesn't happen. Make sure the tests, etc. have been done and documented?
  • File in a timely manner. If the doctor's office files the claim, ask to be informed about when the claim was filed with the insurance. If you aren't notified right away, check on it. The claim might be rejected if it was not filed in a timely manner.
  • Pay your co-pay, deductable or patient portion amounts as they are due. Unpaid, this can be a reason for rejection.
  • File everything electronically and keep a digital paper trail as a reference.
  • Conduct all correspondence concerning your claim via e-mail whenever possible. This includes correspondence with your doctor. (Snail mail is fine, too, as long as you keep copies and logs.) If the communication is during a doctor's visit, ask for a record of it from there.
2. If a claim is rejected, it can be appealed. First, find out why it was rejected, fix the problem to the best of your ability and reapply.
  • Make necessary corrections. If it is any of the above, do what is needed to correct the paperwork.
  • Be proactive. The more proactive you are, the more likely you are to get a positive result. Ask specific, detailed questions like whether your claim was filed digitally or physically. Ask for copies of that filing.
  • Correct codes. There may be errors or omissions in the diagnosis and procedure coding. These codes are what the insurance company goes by, more than words! Ask the doctor to rewrite the incorrect information.
  • Get a letter of medical necessity. The insurance company may say there was insufficient medical necessity. Ask the doctor to write a "letter of medical necessity," specifying diagnosis, recommended treatment, and the length of treatment time. This may also work if the claim was denied for lack of prior authorization.
3. If the claim is still denied:
  • Enlist the support of advocates: Talk to the doctor again. Doctors have to deal with such issues all the time and they know the right words to use. The hospital social worker is another good resource.
  • Apply again and again. Because insurances work on a profit basis, the longer they can keep from paying out money, the more profit they can show. The more times you reapply, the higher your chances are of approval.

4. Negotiate. If the claim continues to be denied, the reason will almost always be based on cost.
  • Negotiate a percentage. Learn the true cost of the procedure and negotiate a percentage the insurance will cover if you pay the rest.
  • Move the negotiations down a level. If the insurance won't cover, negotiate with the hospital and doctor. They will almost always be willing to accept a lower payment rather than none at all.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, January 22, 2016

Negotiating a Truce

Blogger Eric Barker (Barking Up the Wrong Tree) says we all need to know how to persuade people. He asked the NYPD hostage negotiators about how they do it. As I read his blog, I found a lot of similarities between a hostage situation and dealing with a PwLBD who is acting out. In both cases, emotions, not rational thinking, rule. We are also fans of Teepa Snow with her "Positive Approach" and of our own local dementia expert, Geri Hall, who has been working with dementia caregivers for well over 40 years. Here are the four NYPD "secrets" from Eric adapted to address caregiver situations with some similar statements from our own gurus.

1. Know their hooks and buttons. Hooks are things your loved one likes. Caregivers often have a head start here because you usually have a good idea of these already. But to find out what is important at this moment,

  • Listen without judging. Take the time to understand not just the words, but the emotions behind the words. Listening means you are validating the person, not necessarily the story. Teepa also suggests you get on their level, and use eye contact.
  • Show interest. The NYPD suggests that when a hostage holder makes "crazy talk", the negotiator say something like this: "Oh, that's really fascinating. I never heard it in quite that way before. Help me to understand. How did you come up with that?" Teepa Snow suggests that you ask person who is hallucinating to "tell me more" and ask specific questions about color, etc. Both examples show you are involved with the conversation.
  • Suspend your ego. Put your own needs, wants, and opinions aside. Don't interrupt or try to correct, which will be perceived as judgmental. No-one likes to be judged, thus it will escalate the situation. This doesn't mean that you have to agree. It only means that you don't express your disagreement. Geri reminds us that they can't hear your concerns right now anyway. They are much to focused on their own issues and their own view of them.

2. Focus on the future. The PwLBD will likely be talking about the past...events that were perceived as painful. Once your loved one feels you are listening, try to turn the conversation to the here and now, and to the immediate future. Geri puts it this way: "Agree, apologize, promise to fix." The "agree" gets you on their side. The "apologize" maintains their dignity. Do it even if you aren't in the wrong! Just do it. Then the "promise to fix" puts you both into the future. Be careful not to make promises you can't deliver. Promise to "work at fixing" or "checking it out" rather than delivering the whole thing. Teepa suggests that you ask for their help in fixing the problem. Ask what do they think can be done.

3. Model the behavior you want. In this case, be calm and soothing. However, Teepa Snow suggests that first, you agree with the PwLBD, matching their level of anger and voicing what they might not have been able to say. THEN, take some deep breaths and get them to take deep breaths with you. And THEN, go into the calm, soothing routine. Trying to calm someone who doesn't feel you are "there" for them is often futile. When they feel you are "on their side" they don't have to be so angry and can allow themselves to take those deep calming breaths and relax.

4. Slow it down. Each step of this process should take a lot of time. You would probably like to just get it over with! But moving too fast leads to pressure and intensifies emotional decision making vs. rational decision making. This is true for anyone under stress. Add the difficulty that a PwLBD has with thinking in general and this is greatly increased.

  • As the PwLBD begins to calm down, slow your own responses even more. Make sure you are both on the same page. A small spark could start the acting-out all over again!
  • Be very clear about what is going to happen next. Make sure the PwLBD is happy with this and doesn't feel pressured. "OK, let's go to dinner and then I'll talk to the nurse about your purse. Are you all right with that?"

View some of Teepa Snows wonderful videos: http://teepasnow.com/resources/teepa-tips-videos/

Read Eric Barkers fascinating blog: http://www.bakadesuyo.com/2015/11/hostage-negotiators/

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.



Friday, January 15, 2016

"I think I'm Getting Dementia Too!"

What dementia caregiver has not said or thought "I think I'm getting dementia too." When you feel this way, it is probably true that you ARE exhibiting signs of dementia. That doesn't mean you have it! What it does mean is that you are probably stressed, have been for some time, and need to take care of herself. Stress is a leading cause of reversible, temporary dementia. Or let's be gentler and call it temporary mild cognitive impairment.

No one thinks clearly when they are stressed. We are hardwired to react without thinking when we are stressed. That's the way the caveman escaped the saber-toothed tiger. He didn't stop to think about what to do; he just ran. The remedy is a break from caregiving...maybe five minutes locked in the bathroom to take some deep breaths, or maybe a whole week's vacation away from the loved one. Or, likely something in-between, hopefully on a regular basis, like a girl's afternoon out with friends.

Stress can make the PwLBD's dementia symptoms worse too. When the body has to deal with stress, then it the Lewy bodies are allowed "free reign" and symptoms increase. Stress does not cause LBD or make it progress faster, but it sure does make it more unpleasant! Anything you can do to keep stress at a minimum will decrease symptoms and increase quality of life. One of the main stressors is the stress level of the caregiver and so we are back to how to reduce caregiver stress. Other reasons are environmental and emotional. In most cases, find the stressor, remove or decrease it and the stress will also decrease.

There some other causes of reversible dementias. These are usually easier to diagnose than the progressive ones like LBD or Alzheimer's because they have specific causes. Some are very serious, such as brain tumors, and may require surgery. Others are easier to fix--these are the one this blog and the next will be addressing.

Vitamin D deficiency. I discussed this in last week's blog. It is very common with the elderly and can cause a lack of energy and possibly cognition losses.

Dehydration. When there isn't enough fluid in your system to allow blood to circulate freely, adequate oxygen doesn't get to the brain or other organs. This is more likely with the PwLBD than with the caregiver, but it can happen. Signs of possible dehydration include bad breath, headaches, dry skin and a craving for sweets. Signs of good hydration: a) urine that is a clear, very light yellow, and b) skin on the back of the hand that quickly bounces back after being pinched, pulled up and dropped. To improve water intake, choose plain water over fizzy drinks or colas. Drink smoothies and fill up on vegetables and fruits instead of dry carby foods like crackers and pastas.

Sleep deprivation. Seniors are also more likely to be wakened up with bathroom breaks and sleep apnea spells. It can be especially serious for the 24/7 caregiver who is up night after night with a restless loved one. Signs of sleep deprivation are hunger and weight gain, impulsivity and being overly emotional, poor memory and decision making skills, poor motor skills--and a susceptibility for illnesses. (Very similar to signs of stress!) The average person needs about seven hours of sleep a night. If you aren't getting this, try to catch a nap during the day when your loved one is napping. To allow easier sleep, use pressure pads for beds and chairs to warn you about when a loved one is getting up.

If none of these fit but you still feel "dementia-like," next week's blog will be about a few more reasons for feeling less alert.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Monday, January 11, 2016

Nutrition for the Aging: Vitamin D

A few weeks ago, my doctor told me that I was highly deficient in Vitamin D. She added that this wasn't unusual for someone in my age group (over 65). About 70% of us don't have enough Vitamin D in our systems! Vitamin D helps us to keep strong bones and muscles. This is especially important with LB D, where falls are common. It also improves immunity and helps to fight infections, another issue LBD caregivers deal with continually.

Vitamin D deficiency caused loss of bone and muscle strength appears to be recoverable with adequate Vitamin D. However, extended deficiencies may result in some loss of cognitive ability--which may or may not be improved with better Vitamin D levels. Oh, yes! I need to increase my Vitamin D right away!

For anyone over 65 and anyone who is infirm, the DV (Daily Value) is 800 IU. (This has increased from 400IU for all adults.) The best, and usually, the easiest, source of this vitamin is from the sun. Sensible sun exposure (5-10 min of exposure of the arms and legs or the hands, arms, and face, 2 or 3 times per week) allows the absorption of Vitamin D without much danger of cancer.

However, several issues interfere with this. The first three apply to everyone:
  • Anyone living as far north as Boston or San Francisco is at risk for Vitamin D deficiency, especially from October to April.
  • Anyone of darker skin, living in a non-tropical location, is at risk for Vitamin D deficiency.
  • A justified fear of cancer has led to the use of sun-block. The problem is that the same UV rays that cause cancer are also the ones that deliver the Vitamin D. Leaving the sun block off for the first few minutes, time depending on the intensity of the sun, can alleviate this issue.
Even if a person lives where there is an abundance of sun, aging can cause other problems.
  • The elderly tend to be out in the sun less, especially if they are mobility challenged.
  • Elderly bodies tend to be less efficient at absorbing the Vitamin D, at both skin and intestinal level, and one absorbed, turning it into a usable nutrient. Therefore, we need more than our younger relatives do.
Since getting enough Vitamin D from the sun is probably not going to happen, we need to get it from other sources. There are only a few good food sources:
  • Cod liver oil. One tablespoon = 1,300 IUs of Vitamin D. Our grandmothers knew what they were doing when they made their children choke down cod liver oil every spring! Now, it comes easier to take capsules. However, cod liver oil is that is also high in Vitamin A. Taking enough to satisfy your daily Vitamin D needs may put you well over Vitamin A's upper limit of 10,000 IU. If you choose to use take the capsules, read the labels carefully.
  • Fatty fish, such as swordfish, salmon, tuna, or sardines have high levels of Vitamin D, but not enough to get your full daily allowance unless you eat a LOT of fish. A three oz. portion of baked wild salmon meets the DV. The same amount of farm salmon provides only half that and if you fry either one, you lose about 50%. Few of us can afford to eat salmon everyday, especially wild salmon. But canned tuna is almost as good. A 4 oz can of white albacore tuna also meets the DV. Do include some fatty fish in your weekly diet.
  • Some milk, yogurt, orange juice and cereals are fortified with Vitamin D. Read the labels. Make a habit of reading labels and choosing those of these products that are fortified even if they cost more.
Since few people, and especially the elderly, get enough Vitamin D from food, most doctors prescribe Vitamin D supplements for their elderly patients. Supplements may start as low as the former DV of 400IU/day and go up to 50,000IU taken one to three times a week. When my doctor prescribed a large dose for me to take once a week, I asked about the safety of this. After all, Vitamin D is a fat-soluble vitamin and therefore, the excess isn't secreted in the urine. Apparently, large doses are absorbed better than many small doses and when the need is great, large doses are better. Sigh. I guess I'll just have to deal with having to remember to take that weekly capsule--or I may not be able to remember!

However, there may be a downside for the elderly who are already at risk for falls--a group that often includes PwLBD. A new clinical trial found that these higher doses of Vitamin D may increase falls in this group. This report makes it even more important to monitor and maintain Vitamin D levels so that they don't get so low that the larger doses are needed.

References:
http://www.drweil.com/drw/u/QAA400033/Cod-Liver-Oil-for-Vitamin-D.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2698592/
http://www.jwatch.org/fw111030/2016/01/05/high-doses-vitamin-d-associated-with-increased-fall-risk?

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, January 1, 2016

New Year's Resolutions 2016

1. I will practice gratitude. When a friend or family member spends time with my loved one I'll send them a quick thank you note. (Besides making me feel better, it’ll encourage them to help more in the year ahead.) And I'll thank myself when no one else does. Even if my LO doesn't say it out loud, I know they are thinking it...or would if they were able to.

2. I will take at least five to ten minutes of "me time" each day. I know my emotional health is a important. I will do some deep breathing, meditate, read some inspirational literature or enjoy a hobby for that time.

3. I will join a support group where I can learn, share and vent.

4. I will find a way to exercise that fits with my schedule and my preferences. And then, I will truly make an effort to do it regularly.

5. I will find a way to get enough rest. This might be moving to a different bed if my loved on is a restless sleeper, or even hiring a nighttime caregiver. I know that I can't be a good caregiver without adequate sleep...or a healthy one either.

6. I will take care of my physical health. I will keep my doctor's appointments and follow through on the doctor's advice. I will get my flu shot and take my medications regularly.

7. I will ask for help. I will remember that asking for help is caring and smart. It is NOT selfish or a sign of failing. I will start by learning about local resources and support that may be locally available. I will make up a list of activities to give to people who ask "How can I help?"

8. I will work to see the world from my loved one's point of view, so that I can "join his reality" let him know I recognize his feelings and thus, defuse his anxieties.

9. I will let go of the "shoulds" of life and look for the positive in everything I do, and in everything my loved one does...even if it is smearing feces on the wall I just cleaned yesterday.

10. I will view the professionals in our lives as partners, not adversaries, and until proven wrong, will assume that they want the same good care for my loved one that I do. I will remember I am my loved one's advocate and that most advocacy requires diplomacy.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, December 25, 2015

Merry Christmas!

Merry Christmas to all our readers. We are going to spend the day with family and enjoy that special closeness that family can bring. We hope you too will have a wonderful holiday, full of peace and love.

Helen and Jim Whitworth