A Caregiver’s Advocacy Armor

Isn’t it funny that everyone always asks us how our loved one is doing.  It’s the rare one who asks about our welfare, as if our concerns, stresses, dilemmas, emotions and frustrations are invisible.  “If they only knew,” we often mumble to ourselves.

While the plight of the caregiver is finally beginning to be understood by business and industry (with some more progressive companies instituting ‘parent care’ programs, supports, and time off), and public awareness of caregivers is growing (caregiver support groups, caregiver information, and media coverage), what few know or begin to comprehend is the ‘armor of advocacy’ and its weight that caregivers MUST learn to wear.

Without a word more, seasoned caregivers already know of which I speak…

Here’s a few from my annuls:

• Nursing home staff, under staff physician directive, administering an injection of Heparin (a blood thinner), when my mother was already on Coumadin (another blood thinner), when there was no medical reason to do so.  This could have caused a hemorrhagic stroke on the heels of already having suffered a massive stroke from which she was not expected to survive.  Why?  The physician was never told by the unit nurse that she was already on Coumadin.
• An ophthalmologist recommending cataract surgery for both of my mother’s eyes immediately, when, after getting a second opinion, I learned that she easily wait for six months to have one cataract removed because it was not causing any noticeable impairments, and over a year for the other eye as a cataract had barely begun to even manifest.
• An orthopedic surgeon confessing that the hospital (a top ten hospital according to U.S. News and World Report) was pressuring him to use a sub-optimal prosthetic device (a hip replacement part) because “my mother was old anyway.”…why waste a better product.

I could go on, by virtue of my own experience of being a fifteen-years-and-running caregiver, and those of my many clients over more than a decade.

I am a Geriatric Care Manager, and an Elder Law Attorney.  I have counseled scores of client families on these dilemmas.  When I was asked to write for the Stroke Connection, I was delighted to share these advocacy tips—I know how wearying this rugged terrain can be.

So, here’s my TOP TEN advocacy tips:

• Get yourself appointed your loved-one’s Patient Advocate (PA).  Your state legislator, local library or hospital should have template, state-approved form you can give to your loved-one to complete.  You have to sign your acceptance of this power.  Once you are an official PA, you are entitled to review the medical chart of your loved one in any health care facility.  Make sure you find out all medications that have been ordered. Many mistakes may be avoided because of your knowledge of your loved-one’s prescription and medical history.
• If you are the Patient Advocate, don’t let a healthcare facility intimidate you when you ask to look at the chart.  A health care facility generally does not like you to review their charts.  Again, you have this right.  The Privacy Act–HIPAA—might be thrown at you.  You might be told that the attending physician must sit down with you to go through the chart (as if any attending had a hour to spare to sit and watch you), or some other tactic.  Cut through the tape.  Ask for the hospital ombudsman, or the legal department.  In my case, I went right to the head of the legal department and had him sign his business card.  When yet another staff person told me I could not see my mother’s chart, I pulled out THE CARD.
• Always get a second opinion on major decisions.  Preferably, go to a physician in another health-care network, e.g. a different hospital system.
• Be bold and ask every question you can think of with the doctor.  Only because I pressed in following “the loose thread” did the doctor blurt out, in his defense, what the hospital was pressuring him to do—use a lesser quality part in a hip replacement operation.  Following up on things that don’t make sense to you will invariably uncover more and important information.
• Ask the tough questions when reviewing potential homecare agencies.  Simple questions, that also should be asked, are merely preliminary, e.g. how much do your charge, do you have minimum hour-per-day requirements, is your agency bonded, do you do criminal background checks.  But how about, how do you do your criminal background checks?  Do you allow certain criminal histories through the application process?  Which crimes?  Do you fingerprint your employees?  Have any of your employees ever stolen from a client?  Have police ever contacted you to investigate one of your employees?  Describe your quality control system to minimize “bad apple” homecare workers from being employed by you?

• Never let a hospital pressure you to take your loved-one home.  If you are being pressured to take your loved-one home or find a placement ASAP, you don’t think s/he is ready, and Medicare is paying the hospital bill, you can fight the discharge by calling the Peer Review Organization listed on your admission packet information.  You should have received information on how to appeal a hospital discharge, and who to call.
• Visit your loved-one DAILY.  I hate to say it, but if your loved-one is in a health care facility, the very best you can do for him/her is to visit daily, ask questions of all staff, review the medical chart, post signs of instruction on walls (e.g. “please clean her dentures”, “he has bad hearing in his right ear,” etc.)
• Recruit help!!!  You cannot, I repeat, you cannot do everything all the time that you would like to do to be the perfect caregiver.  YOU CAN’T!  You will burn out.  You need to recruit help to take care of some of the day-to-day things that can easily be handled by another.  Practice asking for help.  Whenever someone asks, “how can I help,” have a list at the ready to pull out and name a few things from which the person offering can select.  Anticipate being asked, accept  the offers!  The more help you can get, the longer you can continue in the role of caregiver.
• Consult with a professional.  While many of us cannot afford continued input from a professional, most of us can afford a one-hour consult from a Geriatric Care Manager or an Elder Law Attorney.  Ask your children or siblings to pitch in if you cannot afford one hour of such time.  The reason I became both of these is because my circumstances forced me to learn how to deal with these complex situations.  I had no one to turn to for ongoing and substantial help.  I had no money.  I did have brains and I did have persistence/determination. One hour of help from such professionals can spare you untold grief and energy.
• Treat Yourself.  This sounds so trite.  You have to treat yourself to something substantial on a continuing basis.  Us caregivers typically have very, very hard heads.  Most of us are self-sacrificing.  This can be wonderful…to a point.  Having gone through multiple burnout phases, dark nights of the soul, and near psychiatric hospitalizations, trust me, I speak from experience and authority.