Usually when I write a blog either here or on my personal blog I will write it out in long-hand and then type it up. I have been thinking about this for several days and I have the urge to just type it off the top of my head probably, because I don’t want to do my to-do list and this gives me an excuse not to. so I hope it makes sense.
Since there are so many new members I will give a little more information about my caregiving situation that I normally would. In January 2010 we found out that my daughter, Nicole, who was 15 years old at the time, had been born with a couple of congenital heart defects. One was a large hole (2 cms) called a ventricular septal defect (VSD) and two smaller VSD’s. The ventricle is the lower chambers of the heart and Nicole’s large VSD is between the right and left ventricle. She also has a patent foramen ovale (PFO) which is an intermittent flap in the atrium part of the heart which is the top chamber. Because these were not diagnosed in utero, at birth, or shortly thereafter it caused another heart problem caused Eisenmenger’s syndrome which basically is reverse shunting of the heart. Your heart pumps blood from left to right which allows the oxygen rich blood to go into the lungs and the oxygen poor (blue) blood to go to the extremities with Eisenmenger’s this process is reversed and blood flow goes from right to left. These two heart conditions led to a lung disease called pulmonary arterial hypertension (PH/PAH) which basically is the arteries of the lungs close up because they aren’t getting enough of that oxygen rich blood. This disease is rare, life-threatening, progressive and incurable. The only “cure” is a lung transplant and in Nicole’s case it would be a lung/heart transplant. This is why I am a caregiver.
Nicole sees many doctors and has to wear oxygen 24/7 and if she has to walk or stand for a long period of time she has to be in a wheelchair as she gets too tired. One of the PH drugs that she takes is an infusion medicine that she get through an infusion pump 24/7 which she receives through the skin. When she has to change the site she will experience 10 days of extreme pain and depending on where the site is located may be bed-ridden for several days. I should also say at age 10 Nicole was diagnosed with attention deficit disorder (ADD), generalized anxiety disorder(GAD) and obsessive compulsive disorder (OCD). I also believe she has asperger’s but that was never diagnosed.
Nicole turned 18 last September so she is knocking on 19s door next month. I homeschooled Nicole through middle and high school and she just graduated in July and got her diploma yesterday. She is enrolled in online college classes through Academy of Art University to get a bachelor of fine arts degree in computer animation (at least at this moment) beginning September 3rd. I took care of this whole process from finding an online art school to enrollment to financial aid. She is an incredible artist, photographer and very crafty.
This is where balance comes in at least for me. I am Nicole’s POA now that she is 18 and I talk to everybody/anybody that I need to regarding her medical issues from refilling prescriptions to making doctor’s appointments and everything in between. I go to everything with her that pertains to her health issues and I have to help her with washing her hair and preparing for a shower since her site and pump can’t get wet so it is a process. I also get her new pump ready every day to change and she takes it from there by replacing the one she is wearing with the new one and then covers her site with dressing/tape. It depends on the day how much I do for her.
So… she is 18 years old and I know she is officially an adult. But at the same time, as you moms know, they are always our babies no matter the age. I have a hard time and I guess it is more when it comes to what others say than myself because I feel that I still treat her like she’s a little girl. I know people don’t understand why/how I do so much for her. I can’t explain it other than she needs me to and when/if she is ready to take over all aspects of her care that is when I will step back. I am trying to find the balance of stepping away just a bit in the control aspect.
I worry about her college classes, not because she doesn’t have talent or because she isn’t smart enough, she has an abundance of both, but because of her lack of motivation, time management skills and probably the biggest concern (aside from her health) is her anxiety and her becoming overwhelmed. I saw this all the time during high school. She has a very hard time meeting deadlines too even though I have tried to instill the importance of this. I am trying to find balance in my role as she isn’t a minor any more and so now I am a caregiver for an adult child and I am not legally obligated like when she is a minor. I want to find balance between being a caregiver and being an advocate for caregivers no matter who they take care of, being an advocate for Nicole and her disease. I also want to balance my other relationships and what I like to do and my own interests as well as pursuing ongoing education goals. I also want to make sure that I treat her like she’s an adult but this I find hard when I don’t think of her as an adult.
I guess I need to look at caregiving from the aspect of any one else who is caring for another adult whether it is a parent, spouse, friend, or sibling. I know that Nicole can’t handle all the issues that I do on a daily basis trying to keep all her doctor’s appointments, medications, etc. straight and this is the most important thing. I also know that if it comes time for a transplant I will have to provide her with much more care for a period of time regardless of her age.
I know that most people who judge and/or criticize have never been in a caregiving situation. Or they have healthy children and don’t have these issues as they would be shipping their kids off to college at 18.
So why does it bother me so much and make me feel like I am doing something wrong?