It was a full time job I never applied for. Being a ‘Patient Advocate’ (I capitalize the words because of importance) for my ill family members, is not found on Monster.com. It’s not a title I would give myself…it was ‘sister, wife, or daughter’ at the time. It will never go on my resume. It will never win a Nobel Prize, but it will bring me lifelong satisfaction. The satisfaction of knowing I helped make another human being’s life a little easier while they went through a terrible diagnosis.
I look back in amazement to see how many people do not have someone going with them to the doctor for an appointment, diagnosis, or to the hospital–not to visit, to monitor.
Recently, I have suffered with vertigo. I have never experienced such an illness that affected so many things in my life: concentration, focus, sleep, relationship, work, let alone feeling like I was on a boat all day. I had heart palpitations, anxiety, migraines, (I’ve never had a migraine before), and eye problems. I went to 11 doctors. E-l-e-v-e-n. (thought I’d spell it out, in case you thought it was a typo). The general practitioner sent me to an ENT, who sent me to a specialist, who send me to a cardiologist, ophthalmologist, and 2 neurologists and a physical therapist. I went to 3 holistic doctors (which helped also). Had 2 MRI’s of my brain and neck, and a CT of my skull. I had acupuncture–twice–which ultimately helped the most, believe it or not. (It totally got rid of my migraines). It seemed to start 2 years ago when I fell running with my dog, and legs up from under me, went flying in the air to land on my hip, shoulder and right side of my head and ear. I lost 73% of the vestibular (balance) function in my right ear. I went to physical therapy for a year, once a week.
Through all of this, being single, I went myself, with the exception of one MRI of which they gave me a seditive and I needed a ride. Being of sound mind, and middle age, I felt I could handle the appointments on my own. In the best case scenario of mental health, it was still hard to ingest what the doctors were asking me, as well as their instructions. For the first time, I realized how ‘wrong’ it is to ‘allow’ an elderly, or diagnosed cancer, or MS patient (or other disease) go on their own to an appointment, or to be left alone in a hospital without someone coming in to check on the medications they are on, the results of their tests, or even if they have the basic things in their hospital room…like a toothbrush, hairbrush, lip balm for dry lips, lotion for dry skin. All these things are little but necessary and sometimes do not appear.
Unfortunately, the hospital staff is understaffed many times, and it is hard for them to acknowledge or remember what each patient has or needs. Unfortunately, mistakes are made, medication is sometimes in conflict, and complications are missed. Twice, once for my brother, and once for my husband, did I look at them, and tell the doctor or nurse “there is something wrong”. In both cases, they disagreed with me, and blamed it on something else. In both cases, independently, my brother had sepsis, (a body infection) and my husband was going into respiratory arrest. I knew them and their symptoms well enough on a daily basis, to know that there was something drastically wrong. Both doctors and nurses on the case of these two men, blew it off to the flu, and to ‘normal’ reactions from their illness. I had persisted in having them both looked at, and the diagnosis had come up exactly what I thought–that there was something going majorly wrong here.
In my own family–my brother Ron, (inspiration for RonWear) spent one year in three hospitals and two nursing homes. He went in on March 3, 2004, and passed away March 6, 2005 with complications of diabetes including renal failure and amputation. Our oldest brother Bill and I alternated going to the hospital daily (or nursing home) to see this 61 year old man, with much life in his head, have his body basically disintegrate on him due to improper self care. Each day, we would check on his medications, his skin, (it was extremely dry and itched from the renal failure) his bedding, (which got soiled easily from leg wound seepage) his clothing, his basic needs, his menu, (making sure he was on a low salt, low liquid, low carb, low sugar diet, which sometimes got mixed up), as well as his physical therapy progress. All of these things he could not do for himself to a complete degree. Sometimes it was so overwhelming for him, it was hard for him to think. Living day to day to day in a hospital room for a year, he many times just didn’t even know what day it was. Ron was a very high spirited individual who joked around, kept busy, took care of his mother–ran her errands, picked up her medication–and was now debilitated to the point where he found it hard to make decisions for himself. His mind was so occupied with the illness of so many things going wrong with his body; so many tests being taken, so many doctors coming in for each different area of things going wrong, it was overwhelming. “Thinking” about what he needed, was secondary. Thinking about what would go wrong with his body next was what occupied his mind. Thinking about where his life was headed was another.
My vertigo and vestibular function is 90% better. At least I can work and function clearly now. Looking back at my vertigo and the problem it was for me, and comparing it to the complications Ron had, which were 10x worse than what I dealt with, makes me realize all the more how important it is to have a Patient Advocate. My husband, who had cancer, always felt a little taken back when I would spend so much time with my brother until my husband ended up in the hospital for surgery for his cancer. He told me he apologizes to Ron (Ron had passed away by this time) for feeling like I was taking time away from my family, when now, riddled with the same devastating situation of being diagnosed with cancer and spending so much time in doctors offices, taking tests and visits to the hospital, he totally understood. My husband told me, like Ron did, that when I was there, he felt so much more at peace, knowing I could make decisions and follow up on things he just didn’t have the energy for–mentally or physically. He now knew how Ron felt when I was there. Thankful. Peaceful. Comforted. Both men, independently of each other, called me their ‘Guardian Angel’.
Who do you know that you could be a Patient Advocate for? A family member? A friend? A volunteer for someone who has no one to support them? Is it work? Yes. It it stressful? Yes. Is it worth it? Absolutely. The time I spent in the hospital with my brother and husband has been as rewarding to me as it was refreshing to them to know someone could fight their battles and handle their everyday needs. And after they both passed away, I had no guilt of not spending time with them. I felt I helped them as much as I could for as much as they needed. It was a blessing to me to be needed as much as it was a blessing to them to be cared for. I know someone will be there for me when I am in need, and I will be thankful. Who can you help today to make a difference in someone’s life? Who will say to you today, “what would I do without you”? Find someone. They need you. You’ll never regret it.
~Deb Papes-Stanzak, Founder, RonWear Port-able Clothing