I wrote this post on Facebook over the weekend as someone had sent me a private message suggesting I should write on my caregiving experience. If you already saw this on facebook I apologize for you seeing it again.
Most of you know that Nicole is my daughter. She just turned 18 in September and she is a senior in high school but she is homeschooled which I have done since sixth grade. She is beautiful, intelligent, a very talented artist, very shy, and sweet. She has a wonderful heart.
Since January 2010 it has been like a nightmare that you can’t wake up from. God gives me the grace everyday to get through it. It is very stressful on the caregiver. This week, for example, I was on the phone/email every day with some doctor, Accredo, etc. regarding Nicole. Even though she is 18 I still do all the talking on her behalf.
It takes a lot of time to coordinate all of Nicole’s doctor’s appointments, rehab, school etc. I have to make sure that the whole month is mapped out with her pump changes/increases so this is on my monthly calendar before it is switched to my daily calendar. This is something that can’t be forgotten. When she is going somewhere the O2 batteries must be charged and to go away for the day requires planning as we can’t just get up and walk out the door. I have to plan things around site changes as Nicole will be in pain for 10 days and can’t really do much of anything so my job is to fetch the ice, get her water, just try to make her life a little easier.
A friend and fellow caregiver said what I’m sure a lot of caregiver’s feel … “I don’t feel that I can give 100% to anything I do.” Sometimes Nicole’s medical issues take up so much time it is like a part or full time job depending on the week. There is also Nicole’s schooling, house work, my own interests and times for myself, with Rick, with friends etc. I tend to put so much energy into Nicole and her medical issues that I can go for days without doing anymore than keeping the dishes washed, keeping us fed, and making sure we don’t run out of clothes. There’s tumbleweed’s on my floor from the dogs and the living room looks like a tornado went through. It can be embarrassing to have someone come in. I don’t get to focus on my own interests as much as I would like because I can guarantee that the phone will ring, the doorbell will ring, Nicole will need something etc. to interrupt me. My to-do list and project list is long as most caregiver’s can attest to.
The emotional side is also tough. It is very difficult to process and live with your child being terminally ill. I know it is hard to see any loved one ill but for me personally it is hardest because it is my daughter. It is hard to think about all the things she has missed in her life just because she was only diagnosed in 2010 she’s still been sick a long time. I think about all the things she will never experience…. giving birth to a child etc. All the hopes and dreams you have for your child are forever changed. I hope and pray every day that she will just graduate college or turn 21.
In 2009 I believe God put it on my heart to get my house in order as I have a real issue with clutter and letting things pile up, buying things I don’t need etc. Being the stubborn person that I am, do you think I obeyed and listened? No, and now I am paying for it. I think that the clutter and chaos of my house which is overwhelming for me adds to the stress. Don’t get me wrong I would not make it on hoarders or anything but I do struggle with this. I would like to walk into my house and feel at peace and I don’t because of the clutter, chaos, and messiness in general. My question is always if I open this door what will fall out at me ) My organizational skills are good I think but the upkeep and daily maintenance of them is where I lack and this keeps me from doing my best.
It is very difficult for caregivers to bring all areas of their lives together and I don’t know how I would do it if I worked outside of the home or had more than one child. I have admiration for those who do.
Every caregiver no matter who they take care of or what illness or disability they have makes many sacrifices everyday. I am inspired by so many of those caregivers.
Someday, I hope that I will feel like I am not always pulled in so many directions and that I can remember my name, what day it is, where I live and not have to write everything down either on paper or in my phone to remember things. On the flip side though, I would go through all this and more everyday for Nicole as long as I am blessed to have her.
Sometimes I don’t feel any appreciation from Nicole and I get frustrated but I have to stop and remember … one she is a teenager … or as a friend says … a walking hormone and two she is ill and most days just doesn’t feel good. I have to come from her perspective of having to rely on things from me and not being as independent as she would like and how she feels like a burden whether it is financially or emotionally. She has never been or will ever be a burden.
While I wish Nicole was healthy and had a normal life I am still blessed. I have a wonderful PH family, friends, and in-laws. My outlook on a lot of things have changed since Nicole was diagnosed and I am blessed every single day to have her in my life.
In 1998, I had to take my mom off life support and watch her die which until that point was the hardest thing I had ever had to do, but what I face with Nicole is so much harder for me. I love my mom so much and I still miss her but it is different.