My lawyer was scheduled to attend this court hearing with me and I was also surprised (although I shouldn’t have been) that my father’s lawyer also attended the proceedings.  While I have absolutely nothing against my father’s lawyer (she’s a lovely person and all elders should have their own representation in cases of guardianship and conservatorship), thoughts of  ”I wonder how much additional money this will cost my father’s estate” rang in my head.

You see, once upon a time, families were able to make decisions for their elders without requiring legal representation and all the hoopla and expense that goes with it.  But now, because of privacy laws and because of people taking advantage of our elders, durable powers of attorney for both health and financial affairs, guardianships and conservatorships are becoming more necessary.

My father’s conservatorship became necessary after his dementia increased and  he agreed to sell his lakeside home in Canada for $100,000.oo less than market value.  If you’ve followed this blog for any length of time, you may also remember that he bought a truck while I was at work and had it delivered and later that month called 911 because of concerns over the NASA astronauts in space.  But this conservatorship has cost his estate a few thousand dollars .  Even after his death, there remain legal expenses.

But I think what is really concerning me now is my mother.  As I wrote recently, she is having trouble receiving her social security payments since she has moved to Canada.  At first they told her, it was because they didn’t have her new banking information.  Just yesterday they told her that she doesn’t qualify because she moved out of the country!  I don’t believe that because both she and my father contributed to the social security system in the United States for over 40 years.  But…………..can I talk to them about it?  Nooooooooooooo.  Privacy laws will not allow it.  Please see my post on HIIPA laws  to read more about this.

So now some sort of power of attorney will be necessary  for one of my sisters or myself to help my mother figure this whole mess out.  Meanwhile, she receives no social security payments.  How much will THIS cost?  How much time will it take?  Because of my experiences with my father, I know the proper paperwork to file, but how many families do not?  How many families cannot afford to add yet another cost to their caregiving budget.

Even my own attorney said that this inability to help aging parents without legal paperwork is a waste of time, energy and money for all concerned. 

Something must change!

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?

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.

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.

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

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.