Caregiver: Steve Gallo
My mother-In-law was diagnosed with lupus back in the early 80’s and my wife and I both watched the effects this disease had on her. During one of the many hospitalizations she endured with this disease that dreaded day came where she did not come home from the hospital. She passed away due to complications of lupus and I remember my wife telling me that she prayed she would never get this disease. That was in September of 1995.
Well, unfortunately, that day came in early 2009. It started with swollen joints and pain throughout her body. There was the total lack of energy and difficulty breathing. It took hours on many occasions just to get out of bed. Many doctors and specialists later, she was diagnosed with lupus along with many of the secondary diseases that come with having lupus as Pulmonary Fibrosis, Sjogren’s syndrome, Raynaud’s disease and Arthritis. She also endures constant esophageal spasms with this disease. In addition to all the medications she has to take, she is also on oxygen 24/7.
As a husband and a caregiver I cannot begin to tell you what it is like to have this disease. Only those who live with the constant pain on a daily basis; the lack of energy; the exhaustion from just performing simple things like getting dressed or bathing; coping with the numerous side effects that come from all the medications and the ongoing doctor visits and tests that come along with this disease. This disease takes a huge toll on the mind, body and soul. Even though she deals with all of this on a daily basis I rarely hear her complain. She has truly been a trooper though all of this. Sure, there are the occasional break downs but I believe those breakdowns are necessary and are a good thing. It allows her to just let it all out. I kind of think of them as a cleansing and I make it a point to let her know she is not fighting this battle alone and I am here for her now and will be in the future.
Here is what I can tell you. I do understand she needs to feel that she is not worthless and that she should not feel guilty for no longer being able to work full time, maintain a household, cook, do the laundry, work in the yard, go for those evening walks together or even simply do the dishes. I understand I have to give her encouragement to keep fighting even though the fighting seems useless at times. I understand she still needs and wants to be loved even though this disease and medications make her feel less of a woman. I have come to understand when I have to “push” just a little even though she may not want to but at the same time I also understand when not to “push.” I understand I need to include her in everything even though she may be unable to do it because assuming she cannot do anything would be worse. I understand we have to take one day at a time. I understand that everything takes longer now and that patience is a necessity. I understood I needed to slow my roll. I also understand that she needs to know that I am proud of her for putting up the good fight but most of all; I understand that she needs to know that I love her.