Wednesday, February 18, 2009

Don't expect the same medical facility that treats your loved one to also treat you

I have learned while caring for an ill parent that it is very important to savor the good days. Sometimes, the good days are tucked inside what other people might consider a bad day.

Today did not start out as a very good day. Dad still has the pins in his foot and no medical professional has evaluated dad's infection or even examined his foot since December 2008.

I was excited/encouraged because dad had an appointment today with his orthopedic surgeon at Duke Medical. This surgeon is absolutely a terrific physician and person. I know that when I take my dad to his office that dad will be treated well.

My mom was less excited about the appointment today. She is afraid that the Duke orthopedic surgeon will abandon dad because I have been such a strong advocate for dad. Mom is (perhaps rightfully) concerned that this particular orthopedic surgeon has grown tired of treating our family. Mom considered today and dad's appointment as "sentencing day" for dad.

I let the orthopedic surgeon know in advance that mom was very concerned that he has stopped caring about dad as a patient. After all mom has been through with Duke's mistreatment of dad, I wanted the orthopedic surgeon to be cognizant that mom was becoming afraid that dad would never receive appropriate care.

My "heads up" turned out to be a waste of breathe because there was no appointment today with the Duke orthopedic surgeon.

Did I start this posting as "savor the good days"? At this point, it does not seem that today was anywhere close to a "good day." Stay with me.

I could not take dad to the Duke appointment today because there was torrential rain. Dad is in a wheelchair and my leg is quite unsteady. I literally cannot manipulate dad in a wheelchair when the environment is slick or icy. Bummer.

I contacted the Duke orthopedic surgeon's staff, explained my inability to bring dad to the appointment and asked when the next available time was that dad could get in to see the doctor. I made that contact at about 8:30 am. I never received a response. (Again, stay with me, I promise the day was actually good.)

How on Earth could this have been a "good day"?

1. Dad practiced getting on and off his knee scooter and also practiced with weights. His motivation and attitude today was great. As though of you who care for an elderly parent know, attitude is sometimes the biggest problem.

2. Dad worked on genealogy. Again, it is all about attitude.

As a caregiver, I sometimes feel "put upon" and like my life is, frankly, crap. This feeling typically corresponds with days when my leg interferes with my ability to care for dad. I would have expected today to be prime for my feeling down.

But, tucked slightly underneath a really bad dad was a a great day. Dad's attitude was the first blessing.

In addition,

1. My PCP at Northwestern in Chicago hooked me up with an orthopedic surgeon who at NWM to examine my left leg. Hooray. Appointment set. I am disappointed that no one at Duke Medical would help me but I absolutely get that the caregiver cannot always get medical care at the same medical facility where their loved one is treated.

My job with respect to Duke Medical is to make sure that my dad is treated properly. Perhaps it is too much to expect that the same facility that I "scold" for ignoring my dad would open its doors to help me.

It has taken me many years to realize that fact of human nature.

2. I have found a much better apartment than the mean people at Brookdale on the Park in Naperville, Illinois. Hooray.

3. I have been taking post graduate classes on the Internet during the time I am caring for dad. That is a very good thing for me. Today my class in HIPPA started. I am loving it.


1. Do not expect the same medical facility that cares for your loved one to also care for you.

2. Find something good in very day. Even if you have to search hard and even if the "good thing" is your dog not peeing on the floor . . . do not go to bed until you have determined that there was something good in the day.

(p.s. my dog, Jodi, did pee on the floor today and so I am glad I did not have to rely on her for my "good day")


  1. Like you, caregiving my mom taught me so much about me, and about us--our mother/daughter relationship.

    I called it "good days" and "other days." My mom had Parkinson's, and as time went on, dementia/Alzheimer's, so some issues were physical, and then we had the confusion, denial, paranoia, and at times, anger.

    And yet like you, I'm profoundly grateful for our time together, for what I learned.

    ~Carol O'Dell
    author, Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir

  2. God bless you for caring for your mom.

    You really have not understood my blog at all.

    I have *never* been anything but blessed to have the opportunity to care for my dad. And, I have never even remotely regretted caring for my dad.

    I am honest about the emotions and exhaustion. I encourage other caregivers to be strong and vocal advocates in order to protect their loved ones.

    My job is two-fold: (1) take care of dad's daily needs; and (2) hold the medical community to its responsibility to properly care for elderly patients instead of writing them off and disrespecting them.

    In caring for my dad, I have learned a lot about the medical profession and the deficiencies in the system that stereotypes and frankly mistreats elderly patients. I expect doctors to treat my father with respect and dignity.

    The purpose of my blog is to share my experiences in caring for my dad and the fact that I have fought the medical community at every stage of this. I give my thoughts and suggestions to other people that are in the position of advocating for their loved ones. The advocacy can be exhausting. But the caregivers must never forget that the patient is the most important factor.

    I have learned that hospitals and the hospitalist program model is dangerous. And I fear that the socialist system of medical care in the US has jeopardized the health and safety of elderly patients.

    Good luck to you. And thanks for sharing your opinions with me.