In a study reported by Deborah B. Gentry, it was determined that nearly 40% of adult children acting as caregivers had serious conflicts with one or more siblings regarding the care of their parents.  Many times, this was due to the lack of participation of one of the siblings, arguements over finances or disagreements on where Mom or Dad should live.  With a help of a mediator, these issues can be sorted out in a private, non-threatening setting where the family (including the parents) meets together.

Eldercare mediators have taken classes in this type of mediation.  They may be nurses, social workers, gerontologists or they may also be attorneys themselves.  (If they are attorneys, they do not practice law during the  mediation service.)

What does an eldercare mediator do?

• they are a neutral 3 rd party who helps with decision-making processes
• they help clear up misunderstandings within the family by knowing the right questions to ask
• they provide for expression of feelings and yet, keep the family on tract
• they help the family heal hurts, avoid blame and self-pity
• they help the family consider as many options as possible
• they provide for future modification of the decisions made

Mediators do NOT:

• Make any of the decisions themselves
• Provide family therapy
• Practice law

Who is involved in the meeting?

• Parents and siblings should be present.  The meeting may also include spouses, grandchildren, other close relatives, close family friends, caregivers, medical providers, pastoral leaders and lawyers.

What is discussed at the meeting?

This is up to the family members but some ideas for discussion include living arrangements and possible assistance for the parent(s), driving ability, end-of-life provisions, financial concerns, trust and estate issues, division of responsibility amongst the siblings, etc.

The advantages of hiring a mediator are that parents (or spouse) must give permission for the meeting to take place, thereby maintaining their dignity and autonomy by being involved as much as possible.  Also, if help is needed, financial and task responsibilities can be divided up equally among the children (siblings) or a care contract for a sibling that volunteers to be the primary caregiver can be discussed.  Obstacles are more easily overcome when using a mediator who can keep the family focused on the goal of caring for the parent (or spouse) in the best possible way.  Family relationships are also improved because everyone is kept in the loop.  Those siblings who are unable to attend due to physical constraints can participate by telephone or even on the internet.

The cost of an eldercare mediator is about $100.00 – $300.00 per hour but is a good investment in maintaining or building family unity and working to provide a good outcome for your aging parent(s) or loved ones.

Eldercare mediators can be found through state and local Area Agencies on Aging, attorneys specializing in elder law, geriatric care managers, Alzheimer’s Association (especially support groups) and the health department.

Ironically, later in the day, I was reading a story about MSNBC anchorwoman, Mika Brzezinski and her forthcoming book “All Things at Once” where she describes the day she fell down a flight of stairs while holding her 4 month old daughter.  She had been up all night working at the newsroom and because she couldn’t sleep (during daylight hours), had let her caregiver go home early.  She stated that she had picked up the baby and was talking 100 words per hour and walked right off the top of the stairs, landing with her on top of the baby!  The “baby” is now almost a teen and is fine, but can you imagine the horror, the pain, and the guilt that went along with that experience ? 

In the interview, she went on to say that at that point she learned to ask for help.  “If you’ve got a career that you need to nurture, there are going to be times when you need to transfer your authority to others. I will forever regret that I didn’t get help sooner so I could get through that rough patch in my career. ”

I’m sharing this story not just to talk about career vs. caregiving but to say that we must not wait until something awful happens before we ask for help.  Many of have careers and even if we don’t, we may have children and a husband who need our time and attention, as well.  We must not get to the point where we are too keyed-up to even sleep.  We must not let our families go on with their lives without us. We cannot afford to be the one who is admitted to the hospital with heart problems, anxiety disorder or something even worse while our care-recipient is left behind.  When we want to say No to something, we must say No !

If you are participating in a committee that is becoming burdensome, doing work such as cleaning or running errands that could be “resourced out” to another capable person, working with the local women’s group with whom you have nothing in common, not asking your family members (I’m talking siblings here) for help (even little bits of help), please reconsider your actions.  

Don’t wait for a 911 moment.  Just say No. 

Ironically, I know exactly what I didn’t know in my dream.  I know that I have a lot of guilt over the circumstances of his death .  He wasn’t treated well at the hospital; I HATED seeing him propped up in a chair.  I wasn’t there when he passed away in the middle of the night.  Nobody was.  I wish I could change that and therefore I go over and over it in my mind, trying to rewrite the past but realizing that it is impossible to do so. 

According to Dr. Vickie Rackner, author and keynote speaker, “Guilt is a pain that tells you there’s a mismatch between the person you’d like to be and the person you were in that moment.”  At “that moment”, I would have liked to have been the person who stayed at the bedside 24/7 and the person who KNEW to argue for hospice care and kept my father at home .  I regret that I wasn’t.

Dr. Rackner also states that regret and guilt are distant cousins.  Certainly they are related because regret often leads to guilt.

In the book, “The Emotional survival Guide for Caregivers” by Alexis Abramson, Barry J. Jacobs, PsyD states that when a loved one dies, guilt is the 2nd most predominant feeling in a former caregivers’ experience.  There is guilt that they didn’t do enough, guilt that they are now “free” of the burden of caregiving, guilt that they have their own life back.  This guilt can last 6 months or even longer. It comes and goes but is eventually replaced by the knowledge that the disease process and God’s plan were the biggest factors overall.

Guilt is a part of all aspects of caregiving.  Caregivers are often overburdened and torn between what they need to accomplish for their employer, their spouse, their family and their care recipient.  What was NOT accomplished often leads to feelings of guilt. ( I missed the soccer game; I missed spending quiet time with my spouse; I ran in, dropped off groceries, and ran out of my Mother’s house without stopping to chat at length.)  When I was caregiving for my father, I would often feel bad that I didn’t make the time to sit with him and play cribbage or watch T.V. as often as he wished I would.  There was just too much to do.  We DID play Cribbage at least 2 hours almost every night but as he always said “I have all day !”  He did; I didn’t.

Anger can also lead to feelings of guilt.  We feel badly about being angry that we are stressed, overwhelmed, over-worked, tired, etc., so then we feel guilty which leads to anger back to guilt and more anger….a never-ending circle.  Guilt will also cause us not to take care of ourselves, perhaps because we believe we don’t deserve the care  – which of course, will lead to anger, to guilt…and you get the picture.

In order to get rid of the guilt, it is important to acknowledge that feelings are JUST feelings, nothing more.  You must forgive yourself for your imperfections.  You are only human and no human is perfect.

While you cannot change events or all of the activities in your caregiving role, you CAN change your feelings about them and you may be able to change some of the actual activities themselves.  For instance, if you are finding it difficult to have any quality time with your care recipient because you are too busy doing chores, hire some of them out.  (If expense is a problem, The Area Agency on Aging has a scholarship program for a certain number of hours per month where caregivers can do light housework).  (Meals on Wheels may be available in your area to deliver some hot food to your loved one or perhaps your church may have a program.) When you are able to spend some time with your loved one, you can get to (RE)know them better, and enjoy them.

In the last couple of years, there has been a lot of talk surrounding the book The Secret and the laws of attraction.  Part of that philosophy involves a change in the way you look at the world and your role in it.  You CAN change the way you perceive your caregiving role from one of burden to one of gratitude for the experience.  Changing your perception will cause you to (consciously or subconsciously) change your actions in order to align the two with each other.

You must remember that it is absolutely imperative to take care of yourself and to continue to enjoy life.  Do not feel guilty about those things that you do just for yourself (I’m speaking in moderation, of course).  They will make you a happier person to be around. Do not become a matyr; it does nobody any good. 

So how does this all relate to my dream and my feelings of guilt ?  As I thought it through, I decided that I did the best that I could with the knowledge that I had at the time, so I forgave myself .  I had cared for my father in my home up until the last week and a half of his life and I am proud and grateful that I was able to do that.

With the holidays approaching, I wanted to mention something else that Dr. Vicky Rackner stated.  “Consider giving yourself a holiday gift.  Forgive yourself for one choice that brought you guilt.  Forgive one other person for one action that disappointed you.  Forgive the world for the bolt of unfairness that stood between you and an old dream.”

I hope that you can do that.

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  ”

Courtesy of Tena home health products are some tips to reduce stress during this busy season, written by Ann Cason, a caregiving expert and founder and director Circles of Care.

With that in mind, we must be proactive in trying to reduce the odds of delirium occurring when our aging parent or loved-one becomes a hospital patient.

By taking the following ten steps, you may be able to reduce the risk of delirium:

1. Bring  a complete list of all medications (and their dosages), as well as a list of all over-the-counter medicines to the hospital with the patient.  It may help to bring the medication bottles as well.
2. Prepare a “medical information sheet” listing all allergies, names and phone numbers of physicians, the name of the patient’s usual pharmacy and all known medical conditions. If you have any reports such as CT scan results, recent lab tests or notes from a recent doctor visit, bring those too.
3. Bring glasses, hearing aids (and extra batteries), and dentures to the hospital. Older persons do better if they can see, hear and eat.
4. Bring in a few familiar objects from home. Things such as family photos or favorite photos in an album, a pillow, a favorite comforter or blanket for the bed, rosary beads, a beloved book and relaxation tapes can be quite comforting.
5. Help orient the patient throughout the day. Speak in a calm, reassuring tone of voice and tell the patient where he is and why he is there.
6. When giving instructions, state one fact or simple task at a time. Do not overwhelm or over stimulate the patient.
7. Massage can be soothing for some patients, but remember that for others, it can be over-stimulating. 
8. Stay with the hospitalized patient as much as possible. During an acute episode of delirium, relatives or perhaps friends should try to arrange shifts so someone can be present around the clock.  If family is not close, and it is affordable, ask about having a “sitter” present. 
9. If you detect new signs that could indicate delirium — confusion, memory problems, personality changes — it is important to discuss these with the nurses or physicians as soon as you can. Family members are often the first to notice subtle changes.
10. Find out more about delirium. The American Psychiatric Association’s “Patient and Family Guide to Understanding and Identifying Delirium” is available on line.

Adapted from The Hospital Elder Life Program 2007

I also wanted to introduce you to the QAS website because they have some great teaching articles about vitamin K (a vitamin that should be limited when receiving Coumadin therapy) and also about some other medications that should be avoided during therapy.  He will discuss those more in later posts.

So without further adieu……

There is good news for patients taking Coumadin^® (warfarin)!

The good news for patients, family members and those who care for a loved-one taking Coumadin® (warfarin) came March 19, 2008 when Medicare announced coverage for patients to test their blood in the privacy of their home. The policy extends benefits to Medicare beneficiaries who have been taking warfarin for at least 90 days for any of the following reasons: atrial fibrillation, mechanical heart valve replacement, or venous thromboembolism (DVT/ PE).  

What is patient self-testing?

Patient self-testing allows patients taking warfarin to test their blood at home with a small finger-stick sample of blood – not too different for diabetic patients who check their blood for insulin levels.

Coumadin^® is a medication that requires a small sample of blood to measure the effect of prolonging the bleeding time designed to prevent dangerous blood clot development. Medicare and many private insurance company’s provide reimbursement for up to, but not more frequent, than weekly home testing to reduce bleeding risks.

Home INR testing however, requires a physician’s prescription for one of the FDA-approved, small, hand-held monitors and for testing supplies. The monitor and testing supplies are not available in retail pharmacies but can be obtained through specialty distributors such as Quality Assured Services, Inc. (QAS).  QAS is a Medicare and private insurance company that distributes, trains, and communicates patient’s home test results to the patient’s physicians.   

Who is a candidate for home INR testing?

Patients who are motivated, with a desire to improve their control of warfarin and reducing the risk of side effects are good candidates for home INR testing. The test is simple to perform by the patient or a caregiver.

How home INR testing works

Home INR testing enables patients to test more frequently than monthly, in the comfort of their home, resulting in better warfarin control and therefore improved safety. Home testing results may be phoned in through a secure 800# provided through the distributor of the monitor. Testing strips are shipped directly to the patient’s home at no additional charge.

Weekly testing is a testing frequency that has been proven superior in clinical studies. Testing weekly evaluates the effect of patients: diet, overall health, metabolism of Coumadin^® and interaction of other medications. Patients or care providers simply phone each home test result into their physician’s office or online service.

How to get started

Patients or caregivers can have many of their questions answered by visiting home INR testing. Specialty pharmacy providers such as QAS, Inc. provide full-service assistance including insurance, clinical and technical support at no charge to the patient.

There are two main types of blood thinners:  anti-coagulants and anti-platelet drugs.  Oral anti-coagulants are drugs that interfere with the biochemical effects of Vitamin K that are essential for blood clotting.  Anti-platelet drugs prevent small blood cells called platelets from aggregating, which is one of the first steps in forming a blood clot.

The most commonly used anti-coagulant in the US is warfarin (also known as Coumadin), which can be taken orally.  However, it takes 2 or 3 days for warfarin to become fully effective, so if immediate anticoagulation is required, intravenous heparin is usually administered in addition.  Warfarin also requires that blood levels be drawn in order to determine the effectiveness of the medication.  These are drawn more frequently at the beginning of therapy and less often thereafter. 

The best-known anti-platelet drug is aspirin.  In addition to its common use as a pain-killer, aspirin is often prescribed for long-term use at low doses to prevent formation of blood clots which can cause strokes or heart attacks.

Obviously, blood thinners must be used carefully since blood clotting is an important physiological safety system that protects us after injuries.  Doctors, patients and caregivers must work together to achieve the right balance between preventing harmful blood clots and permitting beneficial clotting after cuts or other injuries.

All patients receiving blood thinners should take certain precautions.  Elderly patients should observe the same precautions even more scrupulously, which often requires assistance and input from family members and caregivers at home.  Fortunately, most of these precautions are basic common sense.

1.  Take drugs exactly as directed.  Elderly patients may need help remembering to take their medications on schedule.  Make sure the doctor and pharmacist know what other drugs are being taken – some medications may cause an adverse reaction when taken with blood-thinners.  Antibiotics can lessen the effectiveness of Warfarin (Coumadin) and so blood must be tested to determine if adjustments in medication need to be made during antibiotic therapy.

2.  Do not take any other drugs, vitamins, cold medicines, herbal remedies, etc – even common over-the-counter products – without consulting the doctor first.  Aspirin in particular MUST NOT be used without a doctor’s advice, because it is also an anti-platelet drug and may inhibit blood clotting beyond what’s actually good for the patient.  You might be surprised by some of the things that can interfere with blood thinners:  according to the Los Angeles Times (“Booster Shots”, Sept 24, 2008),  Pepto-Bismol may also cause an adverse reaction.  The bottom line is to talk to the doctor before taking anything.

3.  Tell all health care providers about the blood thinners because they may need to modify their usual procedures to prevent or reduce bleeding.

4.  The American Heart Association recommends carrying an emergency medical ID card that lists the drugs being taken; the patient’s name, address and phone number, and their doctor’s name, address and phone number.

5.  Minimize activities that might cause cuts or abrasions.  Most elderly patients probably won’t be playing contact sports, but there are less dramatic ways to start bleeding:  shaving and brushing teeth.  To avoid razor nicks use an electric shaver, and switch to a soft toothbrush to go easy on the gums.  Also, be sure to talk to the dentist before any dental work, even routine cleanings.

6.  Geriatric massage, which is sometimes used to improve circulation and increase joint mobility in the elderly, is not recommended for patients taking blood thinners, because of the risk of damaging delicate blood vessels  resulting in subcutaneous bleeding.

7.  Vitamin K, which is found in leafy green vegetables (lettuces, spinach, brusel sprouts)  and other foods, can interfere with warfarin therapy.  Caregivers who provide food should talk to the doctor about how much of these foods you should prepare for your elderly loved one.

8. Of course, every precaution should be taken to reduce the risk of falls and their subsequent injuries.