When the Questions get Harder: Advocating for a Loved One
Last week I had a doctor’s appointment with my mom, she always wants me to do all the talking. She has schizophrenia and gets nervous when she goes to see the doctor. She is afraid of saying the wrong thing. So afraid that I sometimes hear this in the car the whole way to the appointment, “Jenni, what am I going to say?” I always respond with something reassuring along the lines of “Well mom, you could tell the doctor how you are doing or just say how things have been going for you, this is the follow-up appointment.” We’re always on the follow-up appointment it seems.
My mother has paranoid schizophrenia, a common form of an uncommon condition. She is psychotic much of the time. She hears voices, “auditory hallucinations” is the medical terminology. She hears things that are not real. At least in most people’s reality. We’ve had that conversation more than once. The conversation about the difference between my reality and my mom’s. Sometimes I question the validity of mine also, the concept can lead in circles.
Over the years, I have become an expert on assessing her paranoia versus actual circumstances. There are still times when it’s harder to decipher, and I have to rely on past circumstances about the same issue. She’s had many people convinced of her “other reality” and has lived in an altered reality throughout her life. It helps her mind to stay sane, as weird as that sounds. She couldn’t accept the true reality of her condition, so she was always doing her best to rise above circumstances and live her best life despite having lost much of her self-reliance.
My mother is a fighter, a beautiful soul, full of nothing but love and compassion for all people. She is the sweetest person that I’ve ever met. Imagine having that person for your mother. Sweet as sugar! I heard her say “damn” once. Once. She would always say “oh sugar!” when things went sideways. I love that this phrase comes out of my mouth often, I’m always grateful I say that instead of swearing. It gives me a better perspective and warm memories of my mom as a youngster.
The Beginning of Appointments
I have been taking my mom to her appointments since I was 25 years old. She had to stop driving at the age of 50, she wasn’t safe driving psychotic. Imagine that. She had been driving right up until then, in full psychosis seeing dead animals “all over the road.” She drove herself to the downtown Seattle police station once and turned herself in. That’s how this started, that’s when I knew something was off in her reality. Her thought processes were inaccurate, and that was scary and dangerous, and very painful. This was the beginning.
Psychosis is very dangerous if you are experiencing it in an unsafe environment. It’s not good overall, but if you’re driving a car or headed down to the city police station to turn yourself in because of your delusions, it is a scary situation. I was in nursing school at this time and was 23 years old. My mom was hospitalized and diagnosed with Paranoid Schizophrenia. She has had a textbook experience with it also. Looking back, I studied all about what she would come to experience with her illness.
When my mom first became ill I was in my psych rotation, my last unit of nursing school. I was a student nurse working in one psychiatric unit while my mom was a patient in another. I aced that quarter and graduated with a 3.85. No, I’m not a 4.0 student, I’ve never been that perfect :) I was also 4 months pregnant with my first child and engaged to be married. I add this in because it was a big factor in life, a stress producer one might say. Yes, I was doing things a little backward, but my baby daddy was my boyfriend of 6 years and is now my husband of 33 years.
The appointment that I am referring to is this last one, last week. It was the one where we discussed what will happen as mom’s health continues to fail. I love her physician; he has been wonderful for the past 5 years. He didn’t think through his conversation with me before he brought it up and I had to advocate in a way that was hard for me. I was not expecting it, this response was the first time I voiced my mom’s wishes at the end of her life. I have been her advocate, for 30 years, in her healthcare, living situation, and overall well-being. I had to tell her doctor that she wouldn’t be going to a nephrologist if her kidney function deteriorates any further. She isn’t a “candidate” for dialysis in medical speak. Any medical professional, or average Joe if they knew the situation and my mom’s health history, would agree it wouldn’t be ethical and most probably physically impossible for my mother to be on hemodialysis treatment.
The doctor’s response was one of momentary disbelief, he said “So, you’re going to watch her die?” He proceeded to tell me what would happen, and I had to remind him that I was an RN and knew exactly what happens in kidney failure. I had to respond that “Yes, I am,” what else would one say to that? My immediate thought was sarcasm, “come on do you think we live forever?” I wish I had thought of telling him that I had done the same thing for my father. I flew 3,000 miles across the country to care for my father not 2 years ago, while he passed on. I was his hospice nurse and “wild horses couldn’t keep me away,” was what I told my stepmom. I know how to be a nurse and I’m really good at comfort care. It’s a specialty of mine from my days in Oncology nursing. I gave my dad the best care possible and helped him to pass on to his great reward. It is what I have trained my whole career for. It wasn’t easy, because it was my father that was my patient, but I was at home in the role both literally and figuratively. It was best case scenario for both of us. When our end is near we are blessed to have our loved ones at our side.
So yes Dr., I am going to watch my mother die. Just as I have watched her live. I have witnessed every step of her journey as a beautiful woman, my mother, living her golden Grandma years, with a debilitating mental illness. She has been loved, honored, and cared for in the best way possible. I once had a counselor tell me there was nothing that I could do for her. He told me I could “be witness to her suffering” and go through this with her. That was one of the hardest things that I have heard. Of course, there’s something that I can do, and I am doing it. Does it change the fact that she has a profound mental illness? No, but she has lived her best life with her illness, and I have done the best that I can in caring for her. I wasn’t prepared for her doctor to be on “cruise control” when he brought up her lab work and kidney function. If he had taken in the person who was sitting in front of him and saw her, he would have known a referral to a nephrologist was not appropriate. By the time we left his office, however, he understood my mother’s dilemma (again.)
The important takeaway here is that we need to make our wishes known to our families, loved ones, and physicians. Our lives are unique, we aren’t all funneling down the same path in health care and we certainly don’t choose the same treatments. Be prepared for the aging body, whether it’s your own or a loved one’s. The hard questions will come and advocating for our best quality of life is what is important! Quality of life doesn’t always mean quantity of life.