What do you think when you hear the word Caregiver? Do you truly know what it means? For the first 8 years of Hannah’s life I never would have put that label on our life. The past 4-1/2 years, I would. Caregiving is taking care of someone’s every need 24/7. Whether that person is physically, emotionally or mentally handicapped or a little of it all. A caregiver thinks for the person they are caregiving for. They physically do for that person. They are that person’s EVERYTHING. Some caregivers get a break at night and some, like me do not. It is like being on call 24 hours a day, 7 days a week, 365 days a year. It is physically, emotionally, mentally and yes, even spiritually exhausting.
Some people are caregivers to children, like I am. Some to their spouses and some to their parents and/or in-laws. Some out there I am sure are caregiving for a friend. Whoever it is for, it is difficult. The reason I said I would never consider the first 8 years of Hannah’s life as caregiving is because it wasn’t constant doing. Yes, she had a ton of health issues and surgeries but she was able to go to church and school and we went on vacations and out to dinner. It was mostly like just being a mom (not saying that isn’t challenging or difficult, it is, but there is relief and respite when needed). It was in September of 2013 when all of that changed for us and then in March of 2014 when the drastic changes happened and I went from the role of mom to the roll of caregiver. Yes, I am still her mom and I will do this the rest of my life for her; but my role did change. In January of 2014 is when we had to pull her out of school and my role truly became 24 hours a day, 7 days a week. I still do things for Hannah you don’t have to do for most 12 year olds. I bathe her, I wipe her, I brush her teeth, I mash her food up, I prepare her medications weekly and administer them 3 times daily and the list goes on. There are some things Hannah can and does do for herself. She dresses and feeds herself, she plays well alone in her playroom (this I am truly thankful for) and she can communicate what she needs to me. She is still a toddler in so many ways though and taking my eyes off of her for too long can be disastrous.
Caregiving is hard no matter who it is you are caring for. I have always thought caring for your child would be better than your parent, spouse or friend. I mean, at least your child is that…..a child. Can you imagine caring in the same way for an adult? Well, people do it….A LOT of people do it. They didn’t sign up for it, but circumstances called for it and they just do it. They do it out of love, compassion and necessity. I know a lot of caregivers….I am one. I am no one special. I am just a mom who loves her little girl more than life itself. Did I know when I decided I wanted to be a mom that this would be my life? NOPE! Would I change it? Can I be honest? YES! I wouldn’t change the part where I had Hannah. I would change her life for HER! I look at her sometimes and it breaks my heart for HER! I want more for her. I want her to have fun….to laugh, play, have friends, go to school, church, etc. SHE wants that. But, it is not to be right now so yes, I would change that if I could. As the caregiver, I would change it for me too. I miss living. I miss going and doing. Heck, I even miss working and earning an income (never thought I would ever say that). So, as much as I love her and would give birth to her all over again, there are things I would change. I wish she was more capable of doing for herself (especially in the potty and bath areas). I wish we were going to be doing fun mom/daughter things like getting our nails done and shopping. I wish we could take her to Universal Studios or Disney; but right now none of that is to be. The life of a caregiver and the life of the person being cared for is difficult, different and it can be quite frustrating for both.
A caregivers role is never-ending and it is REALLY difficult to find respite care. Not only is finding someone trustworthy and capable difficult but affording it is almost impossible. I haven’t even mentioned the role a caregiver has in taking care of the medical aspects of the person they are caregiving for. Doctors, doctors and more doctors (many different specialities), appointments, procedures and as mentioned before medications. Fighting with insurance is a nightmare and something I have had to do over and over and over again. I am fighting insurance right now for 2 things for Hannah and it shouldn’t be a fight; but yet it is. I told Dennis not to long ago if I had a dollar for every minute I have waited in a doctor’s office to see a doctor for Hannah I would be a millionaire right now. It takes a lot of patience and perseverance to be a caregiver. It takes sacrifice and inner strength to press on and do what has to be done. It takes love, commitment and grace to do this day in a day out. I never in a million years would have dreamed that the role of caregiver would be a role I would have. I honestly didn’t think I had it in me and there are days I DO NOT want to do it…..but, those are the days God gives me just enough strength to carry on. A caregivers role is a lonely one. Oh, I could write a book on the plethora of feelings a caregiver goes through. The loneliness, sadness, heartbreak and grief. But, I can also testify to God’s grace and goodness in those bad times.
I am not writing this series of blog posts for sympathy or even empathy. I am writing it to bring attention to something that many don’t even know exist as they have never had to do it. I am writing it for the caregivers so they know they aren’t alone. I am writing it because it is on my heart as I know people who are hurting and suffering silently because they are caregiving alone. I am writing it for my own sake to show myself that in my own life I have purpose because there are many days that I wonder why I am even here.
Tomorrow I will blog about something I have experienced called Caregiver Fatigue and how we as caregivers have to be sure to take care of ourselves. Something I am still not very good at.
Until next time……..