Advocating So You Can Avoid Regrets

By Lori Palermo

(Editor’s Note: On a regular basis, we invite healthcare professionals and family caregivers to write a guest blog. We asked Lori to share how her dad’s death led her to a life of advocacy. Lori’s website is www.loveyourlungsbreatheforlife.com. You also can listen to Lori discuss her experiences on Your Caregiving Journey.)

On December 26, 2003, my dad passed away after a 13-year battle with COPD/Emphysema. Since that time I have become very involved in lung disease work and smokefree living. In June 2006, I launched my own website In Memory of my dad; I am now an Advocate For Lung Disease Awareness & Smokefree Living.

When my dad was diagnosed with COPD in the early 90’s, there was not much information available to the public about COPD, nevertheless being a caregiver. This may sound like we were very naïve, but my family had no idea what COPD was all about. We didn’t know that it was a debilitating disease that got progressively worse. Moreover, I had to surf the internet at work to see what “COPD” meant, Chronic Obstructive Pulmonary Disease. The doctors were of no help in explaining anything about the disease. The only thing they told dad was to quit smoking immediately, which he did. However after 40 years of smoking his lungs were quite damaged and there was no turning back.

Once the doctors put dad on the correct meds, you would never have known that dad had a lung disease. However, as the years went on, I remember noticing slight changes for the worst in dad’s breathing. Dad always wanted to protect my sister and me, so he never actually let us see how bad he really felt, or how bad his breathing was digressing. Only my mom knew how bad dad really was. However she always put on that “happy face” and said he was doing “good.” I believe this was the older generation’s way of dealing with life.

It wasn’t until a few months before dad passed away that a girlfriend of mine mentioned to me about a new research she heard about which involved resveratrol, a polyphenol antioxidant which is found in the skins of red fruits such as grapes.  I searched the internet and found an article linking red wine as a suppressant to this debilitating disease. I decided to let Dad read the article and even though he was not a wine drinker, just maybe he would start drinking a glass of red wine a day with the possibility of slowing down the deterioration of his lungs. Dad did agree to drink a glass of wine a day. This daily glass of wine was going to be A Ray of Hope.

Since I have become involved in lung disease work, I have also learned so much about caregiving, not only for a lung disease patient but for a person with any type of chronic illness. What I feel in my own heart is that if I would have begun researching COPD/Emphysema years earlier, I believe I could have helped my dad live a few more years with certainly a better “quality of life.” You see, my dad and I had a very special bond, and we were very much alike. That is why I believe I could have helped him; that is the one regret in dealing with dad’s death.

So, as I call it, “The Importance of a Caregiver and Patient Relationship:”

Whether you are a family member, friend or professional caregiver there are important facts that should be discussed, written down, and always readily available in case of an emergency or if the family caregiver’s back-up must step in.

1. Learn about the disease; family members and patient through books, internet, support groups.
2. Have family discussions concerning how to care for the patient.
3. The patient should be involved in all discussions.
4. Keep a journal of all discussions and have it readily available.
5. Medications/schedule of meds/pharmacy/what the medication is for should be annotated.
6. Needed equipment and where purchased. (oxygen tanks/tubing, nebulizer, special bedding, exercise equipment/toiletry needs) should also be annotated.
7. List of Doctors/Specialists, phone numbers/addresses, again annotated.
8. Family members should know about household finances/bank accounts/life Insurance & health insurance information/living will.
9. Learn about the patient‘s physical and mental state of mind.
10. Write down questions or concerns for each doctor’s visit and take notes!

Two months before my dad passed away, I printed out page after page of info about COPD/Emphysema. As my family read over it, we were shocked at the outcome. I then decided to go with my dad and mom to his next doctor’s visit. I had a list of questions for the doctor. Most of the questions I asked, the doctor skirted around the answers. The final question came with an answer that as a daughter who thought of her dad as “invincible” and “her hero,” was the last answer I expected to hear. “What stage of COPD/Emphysema is my dad in…?” “The end stage” was the answer.

On December 15th, 2003, Dad was rushed to the hospital with pneumonia. It was like a whirlwind, he was put on a ventilator. I never got to speak to him again. Two weeks later I received that dreaded phone call; Dad’s condition was much worse, we had to make the final decision. At 7:30 am on December 26th, dad passed away peacefully as we took him off the ventilator.

Patients, families, friends, and caregivers… please learn all you can, do all you can about your loved one’s disease. You don’t want to live your life with that one regret: “What if I would have…”