Gary’s article can be found immediately below.

“Coumadin^®, available generically as warfarin, has been widely used to reduce the risk of stroke for well over 50 years. Dwight Eisenhower, Richard Nixon and George Bush senior were all taking Coumadin during their active years of former Presidency. Despite millions of prescriptions written annually for this medication, practical, easy to use information remains a challenge.

One of the most common and historical needs of managing warfarin is diet, specifically, dietary vitamin K. Physicians use warfarin to increase the bleeding time in patients at risk for developing unwanted blood clots. The goal is to prolong the bleeding just time enough to prevent clot formation where it isn’t needed (the heart and lungs for example) but allow clotting to take place for normal blood vessel bleeding repair. While warfarin prolongs your bleeding time, dietary vitamin K increases the body’s natural ability to form clots.

The simple blood test called an INR test measures that active anti-clotting effect of warfarin. The higher the dose of warfarin, the more potent or longer the blood takes to clot. A diet high in vitamin K can reduce the effect of warfarin and lower the number of the blood test result. For this reason, it is important for patients to keep a consistent intake of dietary vitamin K to help maintain safe levels of protection warfarin provides without interfering too much.

It is difficult to monitor vitamin K intake when food and beverage labels do not provide this information and the FDA does not require it. While professionals teach vitamin K is abundant in leafy green vegetables – there are many hidden sources patients and their care givers need to know about. Salad dressings and some mayonnaise are good examples.

The vitamin K registry

An easy to use, extensive vitamin K database is available for patients and their family. The vitamin K diary allows you to simply type the first few letters of a food or beverage you’re interested in and a menu of products is displayed listing the serving size and the amount of vitamin K. The vitamin K registry can help you keep balance and choice in your diet. A printable version is also available to assist in creating grocery lists for the Coumadin patient.

The vitamin K diary

The vitamin K diary is an interactive resource for patients or caregivers to keep track of vitamin K intake. While using of the vitamin K registry as a source guide, the vitamin K diary allows the user to record the vitamin K (listed in micrograms) consumed for each meal. The diary, offered as a word document, calculates the total daily and weekly intake of vitamin K. The vitamin K diary is best used 7 days prior to the patient’s blood test to best evaluate the effect of diet and shared with the patient’s healthcare provider.

For other helpful resources on maintaining your quality of life, visit www.PTINR.com  ”

I am copying verbatum a flyer that is distributed by the Alzheimer’s Association entitled “Principles For a Dignified Diagnosis” because although it was published earlier in 2009, I had never seen it and thought maybe many of you had not seen it either.  It’s important.

“Principles fro a Dignified Diagnosis is the first statement of its kind written by people with dementia on the subject of the Alzheimer diagnosis experience.

In the 2008 report Voices of Alzheimer’s Disease: A Summary Report onthe Nationwide Town Hall Meetings for People With Early Stage Dementia, the Alzheimer’s Association identified diagnostic challenges and dissatisfying interactions with the medical community as two major challenges articulated by people living with the diseases.  These principles are their insights on how to make that experience better.

* Talk to me directly, the person with dementia.

    I am the person with the disease, and though my loved ones will also be affected, I am the person who needs to know first.

* Tell the truth.

Even if you don’t have all the answers, be honest about what you do know and why you believe it to be so.

* Test early.

Helping me get an accurate diagnosis as soon as possible gives me more time to cope and live to my fullest potential and to get information about appropriate clinical trials.

* Take my concerns seriously, regardless of my age.

Age may be the biggest risk factor for Alzheimer’s, but Alzheimer’s is not a normal part of aging.  Don’t discount my concerns because I am old.  At the same time, don’t forget that Alzheimer’s can also affect people in their 40s. 50s and 60s.

* Deliver the news in plain but sensitive language.

This may be one of the most important things I ever hear.  Please use language that I can understand and is sensitive to how this may make me feel.

* Coordinate with other care providers.

I may be seeing more than one specialist – it is important that you talk to my other providers to ensure you all have the information so that changes can be identified early on and that I don’t have to repeat any tests unnecessarily.

* Explain the purpose of different tests and what you hope to learn.

Testing can be very physically and emotionally challenging.  It would help me to know what the purpose of the test is, how long it will take and what you expect to learn from the process.  I would also appreciate the option of breaks during longer tests and an opportunity to ask questions.

* Give me tools for living with this disease.

Please don’t give me my diagnosis and then leave me alone to confront it.  I need to know what will happen to me, and I need to know not only about medical treatment options but also what support is available throught the Alzheimer’s Association and other resources in my community.

* Work with me on a plan for healthy living.

Medications may modify some of my neurological symptoms, but I am also interested in other recommendations for keeping myself as healthy as possible through diet, exercise and social engagement.

* Recognize that I am an individual and the way I experience this disease is unique.

This disease affects each person in different ways and at a different pace.  Please be sure to couch your explanation of how this disease may change my life with this in mind.

* Alzheimer’s is a journey, not a destination.

Treatment doesn’t end with the writing of a prescription.  Please continue to be an advocate – not just for my medicial care for my quality of life as I continue to live with Alzheimer’s.

For more infomation and support, contact the Alzheimer’s Association: http://www.alz.org or call 1-800-272-3900.

Many of these principles would apply to other diagnoses as well.

I wanted to add

Over time, the caregiver child  frequently finds the necessity to leave the work force as the labors of care giving become too time consuming and/or stressful.  Vacations and sick leave had been utilized when a parent was hospitalized, leaves of absence were taken during extended illnesses and recovery of their loved-one.   I have noted on many forums, adult children asking advice on whether or not it was fair to use their loved one’s funds to help ease the financial burden that care giving  often causes.  As the aging population in the United States increases, more and more workers in their “sandwich years” are finding it necessary to leave the work force.

None of us feel comfortable accepting payment for caring for our parents or loved ones.  After all, they cared for us as we grew into adulthood; shouldn’t we be there to care for them too?  We would all love to be in a financial position to provide such care without compensation, but the truth of the matter is, most of us are not in that position.  Most of us need some kind of an income to support ourselves and our family. 

When a caregiver leaves the work force to care for an aging parent, they are giving up many things: an income, of course, health insurance, social security contributions (which will cause a reflection in their own social security benefits later in life), employer contributions to their retirement plan, and the chance for advancement in their career.  In addition, there in an increase in food, utility, and fuel costs in the caregiving home.

Elder law attorneys are recognizing this fact and are beginning to address the issue of compensation for the caregiving child as they work with  aging parent to have their affairs are arranged.  A parent will often suggest that a caregiving child be left an additional bequest in his or her will in recognition of the services that he/she provided.  Mr. Bernhardt and Mr. Wytychak, an elder law attorney in northern Idaho state that this is not a good idea for several reasons.

First of all, with the high cost of long-term care, there is no guarantee that there will be any funds left over to pass along. 

 Secondly, an unequal bequest may cause jealousy amongst the other siblings who would receive less and who often can’t comprehend the stresses and financial burdens of caregiving.

Thirdly, if one is working towards “spending down” so that Medicaid will be available for additional long term care, ” gifts” are not allowed to be given to ANY child (except by trust to child with a long-term disability), without penalty.

Therefore, the best strategy is to set up a caregiver contract between the infirmed parent and the caregiving child, drafted by an attorney who represents the elder and reviewed by an attorney who represents the caregiver (although the latter is not necessary).  The agreement details all services that the caregiver will provide, which costs may be charged to the elder (medications, personal toiletries, gifts to grandchildren, etc), and the amount of compensation. 

The contract is very useful because it is evidence that the payments from parent to child are not gifts and therefore cannot cause a penalty when applying for Medicaid.  It is also an attempt to reduce friction between family members because the parent is clearly stating their intention. (Friction often still exists, though, because, again, the siblings do not see the day to day activities of the caregiver.)

When a caregiving contract is put into place, the caregiver who is receiving the compensation, must supply a financial report to the courts once a year in order to show that no additional monies are being removed from the infirmed parent’s account.  This accountability is actually a benefit to the elder, as well.

In the experience of most elder law attorneys, parents realize that they are asking a lot from a caregiving child and are greatful for the care that they are receiving (although many times they lose the ability to say so).  You must NOT feel guilty.  If you are caring for an aging or infirmed parent, please consider consulting a reputable elder law attorney for advice on how to proceed.

How does one deal with the guilt?

Be realistic. Take comfort in the fact that you’re doing the best with what you have available to you. If adult diapers are not something you can handle, especially when you are female and they belong to your FATHER, then hiring a caregiver or considering assisted living may be the BEST alternative.

 Be aware that you have rights as a caregiver and that caring for a parent should NOT make you sick nor give up your own life; therefore, you should not feel guilty for taking some time for yourself and for your family.

Be gentle with yourself.  Guilt is like the other (numerous) emotions that come with caregiving.  It is like a cloud floating by, with another cloud of emotion next in line.