Sunday, February 6, 2011

Preventing Caregivers From Suffering Poor Health

Last week the Gallup Poll reported that Caregivers Suffer from Poorer Physical Health.  According to the article, 
Americans who work a full-time job and say they care for an elderly or disabled family member, relative, or friend, suffer from poorer physical health than those who work a full-time job but do not have additional care-giving responsibilities.
The implications from the medical community are obvious and the recommendations are equally obvious.  Maybe its part of the big plan of rationed care.  The Study certainly does not encourage families to care for one another.  rather, the Study suggests that it would be wise to: 

(1) get non relative home health care; or 

(2) get the elderly relative out of the house.

But in America, we take care of our own families whenever possible. We sacrifice for our loved ones to be together.  It's the American way.  That was my family.

So what causes the caregiver's health to fail?  

Why is care-giving so stressful?  

(1) Caregiver already sick or injured

Caregivers who are already sick or injured when the family member becomes seriously ill learn quickly to "suck it up" and do what needs to be done.  But the body can only withstand stand so much.

In my family, wheelchair transfers and physically helping my dad were exceptionally tough for me because (a) my left leg was in pain and (b) I was still undergoing cancer treatments.  

My weakened leg often caused me to fall down after I transferred dad safely.  Of course, I explained the problem with my leg to my Duke Orthopedic surgeon and explained how the hardware in my left leg hurt.  But my complaints were dismissed.

(2) Patient's documented symptoms ignored  by physicians

In order to provide the best care possible for their patients, physicians should work with the family caregivers.  

Caregivers are the ones that understand the patient's pain, appetite level, mood, urine and bowel output.  We take vitals 3-4 times a day.  We know what medication side-effects the patient experiences.

My dad was probably no different than other elderly patients that have complications from cancer chemotherapy.  My dad had bone injuries and terrible skin infections.  

Dad was in horrific pain and cried out in pain during the night.  Although I
requested dad's physicians address my dad's issues of pain, the physicians were concerned that my dad would get addicted.  The pain caused dad to lose multiple nights of sleep and consequently I lost sleep too.

At appointments, I told the nurses and physicians about dad's symptoms. When the nurses or physician asked my dad how he felt or whether he had a symptom that I described, my dad denied the symptom.  Dad would insist he was fine.  

Dad came from a generation and a family where men did not complain. Since my dad did not have dementia, the physicians chose to accept dad's word.  The doctors would ignore me, the caregiver.  That was wrong for the physicians to do.  

Dad's physicians should have had the sense to know that dad wanted to be a good patient, he did not want to complain.  The physicians should have listened to me, the caregiver.  The physicians should listen to every caregiver irrespective of whether the patient suffers from dementia.

Dad and I repeatedly left the physician's office.  We returned home and dad continued to suffer.  I continued to struggle to care for him without any cooperation from the physician.

The medical professionals must communicate, cooperate and work as team with the family caregivers.  In my dad's case, that did not happen.  Ironically dad's orthopedic surgeon was my orthopedic surgeon and knew that I was struggling to walk and move with my left leg.  As such, the orthopedic surgeon knew or reasonably should have known that his refusal to work with me as a team with respect to my dad's care would harm both dad and me.

Dad's health continued to deteriorate and so did mine.  But in my case, the deterioration of the caregiver's (me) health was avoidable.  Physicians saw dad and myself every week.  Physicians knew I was the caregiver and that I was injured and suffering.  

Even if the caregiver does not come to the "game" injured, the physician must respect the caregiver's work. If the physician does not respect the caregiver's work then, inevitably, the caregiver well-being and health will suffer.  In turn, the care to the patient will suffer.

What caregivers can do

I was actually injured (painful metal in my leg and completing cancer treatment) when I started care-giving.  

As a caregiver, you may be starting with a relatively healthy slate so to speak.  That does not mean that you are immune from wear and tear.  

(1)  Get a check up with a good physician that focuses on total well being.  This physician may not be your regular primary care physician (pcp).  

For example, at this point, I am both the patient and caregiver.  I am getting sicker with my bad leg and still have no physician to care for me.  I am proactive with my basic health as I wait for a surgeon to help me. I wish I had seen a caring doctor that focuses on the whole body when I was ignored by my regular pcp.

The physician I see now focuses on health, foods I eat, B-12 vitamin injections, compounded natural substances and reduces inflammation and weight.  He keeps track of my heart EKG and blood work.  I feel stronger and healthier now than I have in months - and that is with a painful, oozing leg.  I feel some control over my health.  

Caregivers would benefit from this type of medical intervention.  I had a psychiatrist and traditional physicians.  But the pain from the ignored orthopedic condition wore my body out.  I needed more than pharmaceuticals.

(2)  Caregivers must be insistent with the patient's physicians that there be a team approach to the care.  That team must include the caregiver.  

a.  Ask the physician what vitals or symptoms he wants you to track.  If the physician wants you to track pain, ask whether he wants you track on 1-10 scale.

b.  Get a notebook and be diligent about keeping track of the information. Be sure to include dates and times of information. 

c.  Before each appointment, write down a list of questions for the physician.

d.  Share the information and ask questions with the physician at each appointment.  

e.  Ask for the physician's input and plan based on the symptoms.  Use a different color ink to write the physician's plan.  If the physician chooses to do nothing regarding a symptom (eg. pain) then be sure and write that fact down.  Ask the physician why and write the reason down.  

f.  Take notes of what the physician says in addition to his decision regarding symptoms.
g.   Date the notes from the appointment. 

h.  Get copies of all blood work and test result.  Keep them all together by date.

The more organized you are as the caregiver, the less stressed you will be and the healthier you will be.

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