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.

Registration for the ceremony was offered several weeks ago, but no one was turned away for not having registered previously.  Upon arriving, we were given the chance to choose an ornament to place on the Christmas tree in honor of the loved one being remembered and a marker to write on it.  There were 2 different shapes of ornaments: round and heart shaped.  There was also an assortment of colors from which to choose.  I hadn’t thought of it before, but the colors would be very important to some people, for instance, my nephew passed at the tender age of 6 (hit by a car) and his very favorite color was green. His siblings wrote messages on green balloons at his funeral and “sent them up to him”.

I chose a red heart for my father ( I think because my heart is still bleeding for him) and a white heart with sparkly green swirls for my nephew.

After enjoying a wonderful brunch in the foyer of the church, we went into the worship area for prayers, hymns and a presentation by author and grief support facilitator, Joanne Petrie.  She was a wonderful speaker and stressed that grief may come not only from the loss of a person, but the loss of a situation – divorce, the loss of a job, the loss of a home, (and I’ll add, in the case of many caregivers, the loss of freedom or the life once lived).  She also stated that recovering from grief does not put you back to “normal” but leads you to accept a “new normal”.  How profound.

After the presentation, there was another song and then the names of all loved ones represented on this day were read one by one.  As the name was read, the family members came up to the tree and placed the ornament there.  Many stood for a moment of silence or placed a kiss on the ornament.  Many cried.

The ceremony ended in prayer for those we had lost and for those who will carry on.  Hugs abounded. 

I am now a fan of Ceremonies of Remembrance.  It was a wonderful experience and something that a family member or friend could do each year without traveling to a graveside which might be a long distance away.  I hope that many churches, temples and synagogues will adopt this kind of ceremony if they have not already done so.

I must add that the ornaments were given back to the family members at the end of the ceremony and now my father’s ornament rests on our tree at home in a place of honor.  (I will send my nephew’s ornament to my sister.)

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.

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.

Sometimes referrals come from friends, sometimes from support groups and hospitals and  sometimes simply from searching through the yellow pages or googling the internet.  This takes time and is also not a guarantee that the resource you DO find is the best one for your particular need.

Recently I discovered a great internet resource called The Senior List . Its Co-founders Chris and Amie Clark describe it as “a national online resource that helps match people with senior-related services in their communities” and comes complete with consumer reviews. 

Once entering their site, you simply click on a state, then a particular city and you will receive a list of providers in that area under the categories of housing, professional care and ancillary services.  As I was exploring the site myself, I noticed that the elderlaw attorney that I had utilized to set up much of my father’s affairs was listed.  Because I had an excellent experience with him, I will now go back and leave a positive review. 

The site also offers educational articles and links to other important resources.

According to Baby Boomer Insights, a blog about those of us born between 1946 and 1964,  “already, there are over 8,000 businesses in the database, but for it to realize its full potential, businesses need to list themselves and consumers need to rate the services they use so that others can benefit from their experiences. Businesses that don’t consistently receive at least three stars (of a possible five)  from consumers are dropped from the site.”

The Senior List is a great resource for care givers nation-wide. We, in the sandwich generation, often use the internet  and because  we often find it difficult to “get out” or because we are care giving by long-distance, this type of solution just makes sense.  If we can see that others have used a particular person or service with success, then we can be confident that we are doing the best we can for our loved ones. 

Won’t you take a moment to check out the site and if their are any resources listed with whom you have experience, or if you’d like to add a business that you would recommend to others, please do.

He went on to buy another car and managed not to crash it.  He gave that one to my sister when he moved to Idaho to live with me and I gave a sigh of relief.  With his dementia and his lower extremity neuropathy, he should not be driving.  But…..lo and behold……when I was work one day, he ORDERED a truck and had it delivered ! It was a used truck and an eager salesman brought it out to the house for a test drive.  My father purchased it there and then, for WAY too much money.  As you might guess, it was just after that that I filed for guardianship.  But receiving guardianship does NOT wash away all problems.  Saying “No” to things just brings out a lot of turmoil so creative thinking is required at these times.

There are many reasons that our elders may need to curtail their driving; dementia is just one.  Other reasons are slowed reaction times, decreased vision and hearing, diabetes, certain medications that have been prescribed, transient ischemic attacks (mini-strokes) and quite a few others.

When a person can no longer drive, they feel a huge loss of independence.  But sometimes that loss is necessary in order to protect the loved one and other possible innocent victims.  If you feel that your parent or loved one should no longer be driving, here are a few things that you might try if simple reasoning with them has not worked. 

Speak with their physician and relate your concerns.  Doctors are not uncomfortable taking “the bad guy/gal ” role and elders will often give more credence to what their physician says than to what a care giver says.

Consult your local “Area on Aging”.  They often have access to an occupational therapist who will obtain a prescription for a driver’s evaluation.  If an elder does not pass, these results will be forwarded to the Department of Motor Vehicles who will then void their driver’s license.

If your parent or loved one has dementia, consult their Alzheimer’s specialist who will counsel them or order a driving evaluation.

If these things fail, desperate action may be required.  Distraction is helpful- “could you just help me plant these tulip bulbs first?”; keys can be hidden (although that doesn’t work for long); certain parts of engines can be dismantled; cars can be taken “to the shop” for inspection and “the problem may be bigger than we thought”.  

These things don’t ALWAYS work, but helps to bide time and as an elder gets used to “not driving”, they are a little easier to accept the role as a non-driver as time goes on. 

These bath tubs are advertised as being great for elderly, disabled or mobility-impaired individuals.  They are made of fiberglass or acrylic, are found in sizes ranging from 48″ X 28″ to 60″X32″  and are said to fit any bathroom.  If the bathtub area is too big, there is an “extension kit” which essentially adds a shelf area to the tub.  They each have a seat installed and there is also the option of choosing one that is complete with a hydrotherapy unit (we chose this option because my father has both arthritis and leg muscle cramps).  The cost for these units can be in the thousands, so it is a fairly expensive purchase but can be one that enables a person to continue to live at home rather than in an assisted living facility.

Having experienced the walk-in tub for over 6 months, I am going to say that it was not the right choice for my father, but it may be a good choice for other senior citizens.

The positive aspects of it were the built-in anti-slip seat, the anti-slip tub floor, the low-level entry, the temperature control (it does not allow the temperature of the “hot” water to be hot enough to burn), the height on the sides of the tub which helps to keep my father from falling, the ease of cleaning the “unit” and the hydrotherapy.

The negative aspects of it are that it is an almost claustrophobic bathing experience when using the shower curtain, as the bathing area is very small.  Additionally, if your bathroom is such that an extension (or shelf)  is required, the shower curtain must sit on the inside of the tub making an even smaller bathing area. 

This is definitely not a product that will enable a person with dementia to have more independence.  It’s much too technical.  Once entering the tub, there is a special lever that must be pulled in order to make the tub water-tight.  My father is confused by the hand-held shower sprayer (doesn’t realize that it can be left hanging in its casing) and several times, I have heard him turn on the hydrotherapy jets without having any water in the tub (is a burnt-out motor in our near future?).  He also forgets (with short-term memory, that means 2 minutes later) that the shower curtain must be on the inside of the tub itself, so very often, we are sopping up water from the floor after his shower (water on the bathroom floor contributes to slipping, as well.)

It is also NOT conducive to caregivers helping with the showering of  the patients or loved-one.  The sides are too high, thus contributing to back strain and the water does not stay in its designated area.  If a caregiver was helping  their loved-one to bathe (rather than shower), it would be fine.

I think this is probably a great product for those in their late 60s and 70s who may be “a little wobbly” and could use the extra support and also benefit from the hydrotherapy.  I don’t think it’s a good product choice at all for those with dementia who are trying to continue to bathe on their own.

Your thoughts?

Please see our YouTube video on this subject for more information.