It wasn’t until I began looking at them as a means of respite care placement for my father that I learned of their costs.  In my father’s case, the daily respite cost was $220 but the monthly cost would have been over $5000.00 for a semi-private room.  This rate did not include medications or transportation to medical appointments. (Rates seem to vary between $4000.00 and $7500.00 per month depending upon the residence.)   None of these facilities accepted Medi-Care and private insurances don’t cover such things.  A couple of them stated that if a person were 2 guarantee private payment for 3 years, then they would not “evict” the resident once their money was gone.  At that time, they would then accept Medicaid reimbursement. 

Recently I have read several articles about assisted living facilities being available mostly in areas of higher income.  In areas of lower income, rural areas and in areas where minorities live (and all 3 of these are equivalent to areas of lower mean income), there are less available assisted living facilities.

In a study at Brown University, a conclusion was made that hispanics would be more likely to use nursing homes than assisted living facilities because they at more likely to be at the lower end of the socio economic scale and did not have the money.  Because of lack of money, they were more likely to be placed in nursing homes with less than desirable facilities, receiving less than adequate care which sent them back to the hospital and began a downward spiral.

I think that another reason that there are fewer assisted living facilities in areas where hispanics live is that their culture has the tradition of elder care being handled by the adult children of the family in a home setting.  My best friend’s mother took care of both her mother and aunt in her home until she was physically unable to do so anymore.

Assisted living facilities vary tremendously; they can contain a myriad of amenities and consist of private apartments with a nurse on duty 24 hours a day or at the other end of the spectrum, they can be closer to a nursing home environment with semi-private areas that consist of 2 beds in a room with a television set.

Assisted living homes are not the right choice for everyone.  Unless a facility has a special unit  (and many are opting to include these), dementia patients should not be placed there.  Sometimes patients have medical conditions that are too complicated for this type of living arrangement, as well.

Nursing homes don’t have much variation.  In MY words, they are simply sad places where lonely people live out their final days. 

In between, there are skilled nursing facilities, but in most instances, these are temporary placements until the “patient” can either be returned home or to a more permanent placement in a different facility.

I’m concerned about what will happen when the aging population runs out of money to pay for these expensive assisted living homes.  At between $ 50,000 and $90,000 per year, who will be able to live there long?  Our elders were a little more prepared but I don’t believe that the baby boomer generation has prepared themselves well enough to be able to cover even a year of living there.  And now that many boomers are upside down on their mortgages, selling their home won’t help to pay for that care.  Not many of us have long term care insurance either. (And in reality, how can long term care insurance continue to exist when almost ALL of us will need it at some point?)

I also think that with health reform, more families are going to be responsible for the care of their elders.  Hospitals will discharge elder patients sooner and before they are able to care for themselves.  This is happening even now !  I literally had to beg that my father be admitted to help remove the 12 pounds of fluid that had accumulated in his legs due to congestive heart failure.  Sure…..they’ll put a defibrillator in an 86 year old man with dementia (because insurance will pay for THAT)  but when it comes to managing the care of that man post procedure, they’ll leave it to the family.   (And they won’t discuss end-of-life care…but that’s a whole other issue.)

Already, a big portion (17% of employees in south Florida, according to a recent study)* are having to leave the work force in order to care for their aging loved ones and another 15% have cut their hours. 

During the past year, as we have experienced a financial crisis, more family members are gathering together under one roof in order to make ends meet.  Do you think that we will return to the days of Leave it to Beaver and Father Knows Best where Moms become the caregivers for the family while Dads return to providing the financial contribution?

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.

Because………..as a care giver, I must also take care of myself. As my father’s health is declining quickly, I have not been able to do much of that lately. I needed to find an escape from the worry, the daily care giving tasks and the reality that these may be the last few weeks of my father’s life.

What can you do in your own life that will offer you something to look forward to, something to take your mind off the worrying and your care giving duties. I challenge you to find something and to DO it.

I wanted to share with you the following video. (And thank you to a Twitter friend for sharing it with ME.) Although it was not my inspiration to return to ballet classes, it IS inspiring me to continue because I have to face the fact that some day in the future, I will not be a care giver any longer.

[youtube]http://www.youtube.com/watch?v=tb_VkNOGWxI[/youtube]

In less than 2 weeks, I am planning to attend Camp ReCreation in Orange County, a camp for developmentally disabled “kids”/adults. My daughter, Katie and her great friend, Meghan are co-directors of this camp and I will be serving as one of their camp nurses.  It was one of the scariest experiences that I attempted but turned out to be incredibly rewarding. You cannot attend this camp without coming away with a whole new attitude on life.  This is an experience I don’t want to miss, especially because it involves both my kids (my son AND his girlfriend will be camp counselors) .

Anyway….while I’m away, I need someone to take over care for my father as he requires medications, oxygen and due to his dementia, cannot be left alone .  I was hoping for family support but have not received it.  One sister cannot do it because it will cost her $30.00 a day to have someone care for her cockatoo while she is away.  One sister has not even telephoned my father for over a year, so her help is out of the question.  My mother (who is still married to my father) is afraid of flying (and probably would decline even if she were not).  SIGH

My only solution is to hire his respite worker (because he is familiar with him) at $100 a day, hire a nurse to come out to administer medications twice a day at a cost of approx $240.00 a day.  I’ll need to provide food for the respite care worker (as well as my father, of course.)  The daily cost of his care will be approximately $375 per day.  I’m not quite sure who is expected to pay for this care because I receive a monthly salary from my father’s estate to care for him (which is certainly not equivalent to the amount it will cost to care for him while I am away).

Another possibility is to place him in an assisted living facility for the time I’m away but this will only upset him, increase his dementia and cause me to worry the whole time I’m gone – not worth it.

In the 4 years that I’ve cared for him, I’ve never taken a vacation.  Care giving is a full time job; one would think that it came with vacations but we all know that  it doesn’t.

If I had it to do over again and if I knew that I was going to end up the sole care giver, I would have done things differently from the start.  Even though I think my family is more disfunctional than most, I think there are things that could have been done.  If you have family, there are things that you can do now to prevent yourself from “going it alone”.

First of all, call a family meeting.  If your family is spread throughout the country (or world), try to have a conference call.  Do this as soon as possible after you become aware that your parent or loved one needs help.  If you don’t, then your family will get used to you handling the entire care giving process yourself.  They may also think that you don’t want their help.

In the meeting, set an agenda, set rules, give everyone time to talk and be specific about what you need.  Avoid saying “I wish you would help”.  Instead say,  here is what needs to be done; here’s what I need; here’s when I need it. 

If your loved one needs limited care, consider having one of your grown children stay with him/her.   You know the old saying: grandchildren and grandparents have a common enemy (you).

Set a calendar and fill in all the slots where you will need help.  This will include weekly appointments, senior discounted shopping days, your own family vacation, your sister’s reunion, etc.  Then send out the calendar for the upcoming month to each family member so that they will be aware of when they are needed.

If you feel that you need help with your family meeting, there are geriatric care managers located throughout the country who will help your family to explore possible future needs and choices.   If you feel that your family needs MORE than a care manager, there are now eldercare mediators who specialize in dealing with families who have conflicts arising from eldercare needs.  This seems to be an up and coming (and much needed) specialty.  You may not be able to find an eldercare mediator in every state but you might start with a search over the internet.  If you ever need one, don’t hesitate to contact me; I have a few names.

Some siblings just won’t and DON’T help.  If you have tried everything or if you feel your sibling/family relationships are beyoned repair,  just need to let it go and find a different solution.  You’re not going to be able to change the situation and it’s only going to cause you more stress.  In my case, it’s absolutley no use asking for help from my middle sister.

Sometimes siblings and family members who refuse to help have a good reason for doing so and it may be one that is unbeknownst to you.  It may be anything from believing that your care recipient belongs in a nursing home instead of at home, to having been verbally abused by that parent as a child.  We don’t know; we can’t judge; we must just do our best.

When we cannot count on our family for help, we must learn to utilize professionals.  When the costs are prohibitive, there are certain programs available from your local Area Agency on Aging that provide respite hours including overnight hours. 

You might also speak to an elderlaw attorney to determine if funds from your care recipient (if there are some available) might be used for respite care, because if you cannot take care of yourself, you will not able to take care of your parent or loved one effectively.