by Deborah Arrona
Describing caregiving as stressful, beautiful and messy may not seem very appealing. However, in my personal experience it is all of those and more. My daughter Aria is a ten-year-old surviving micropreemie living with multiple medical diagnoses as a result of her premature birth, including Periventricular Leukomalacia, Microcephaly, Spastic Quadriplegic Cerebral Palsy, Cortical Visual Impairment, Epilepsy and Asthma, among others. Aria also uses a wheelchair for mobility and a G-tube as her primary source of nutrition, among other medical supplies to survive and thrive.
As wonderful and rewarding as it is to be her mother and her primary caregiver, it can also be very stressful. I can honestly say when I’m not actually caring for Aria (like when she’s at school) I’m almost always thinking about caring for her. I like to say it’s because I’m just a great mom, which I do believe, but if we’re being honest, it may be more stress than a pat on the back. It is beautiful to have such a wonderful daughter to care for, but all that goes into her particular care is overwhelming more often than not.
I did take a look around the Internet to find some statistics on caregiving, and most of what I found was related to caring for aging parents. This has encouraged me to keep this personal, as it will, hopefully, be relevant to raising a child living with any medical diagnoses. Despite everyone’s caregiving experience being so different and unique, there are five things that are almost always stressing parents or guardians out:
- “Me” time/Isolation
- Going Public
- Being a Normal Family
Me Time and Isolation
I combined “me” time and isolation because for me they go hand in hand. It reminds me of the song lyric to Bush’s “Glycerine,” when the singer sings, “I’m never alone, I’m alone all the time.” Being both Aria’s mom and primary caregiver is a joy; I can’t say that enough. However, we are always together. We have to be, as her medical issues have left her 100% dependent on others for every aspect of her life. Constantly caring for her can sometimes overwhelm my mind with schedules, medicines, durable medical equipment, stretching, bathing, toileting, dressing, feeding, socializing and on and on, up to the point where I almost forget she’s just my little girl.
Isolation is a huge stress factor for me because even when I am with her, sometimes it can feel like I’m alone. Honestly, I will talk for Aria just so I have someone to talk to, until I realize that it’s really just me talking to myself.
For many years after Aria was born, I felt like all my friends abandoned me and went on with their lives. I resented many of them for years, and though some of us have started to rebuild our friendships recently, many of us have not, and I’m not sure it will ever be the same.
When I feel incredibly alone, I start to demand “me” time. Once I’m finally able to work it out, I sometimes still end up alone if I can’t work out meeting up with a friend. I’m ten years into this, and I am still trying to find my way through it, but what has helped is making myself schedule “me” time either alone or with friends before I get overwhelmed. It gives me something to look forward to and makes me feel a little less stressed.
Finances are a big stress factor for pretty much any person nowadays, no matter who you are or what your circumstances are. As is true with many families of children with complex needs, Aria’s level of care requires attention 24 hours a day, so one of us has to stay home while the other works to provide at least one source of income. Aria’s dad picked up a trade and has done a really good job working hard to start climbing that ladder, while I stay home to be her primary caregiver. We are doing fine, but we would love to do better.
Aria has some extra expenses related to her medical diagnoses that neither of her insurances will cover, along with parking fees for doctor appointments and hospital stays, among other things. This makes having only one income difficult sometimes, and saving for a cushion or other things like a family vacation is out of reach. I stress about it because I know that if I could work just a minimum wage part-time job, we could get ahead or build up an emergency fund.
The reality is that Aria needs someone with her at all times and someone available to her at all times. This means when she’s at school, someone has to be available to pick her up if she gets sick, and that’s me. Working from home helped for a while until Aria’s medical issues required even more attention. The relief I get is we’re doing well enough to get by, so staying home is a valid option with no hard consequences to our finances. My husband working hard for many years has been a major help.
Going public stresses me out because of all that goes into taking Aria out. There’s everything we have to take with us to maintain Aria’s medical care outside our home, finding accessible parking, figuring out where to change her diaper, being prepared to bolus tube feed her, and knowing where her oversized wheelchair will fit. Then there are concerns about how loud it is where we’re going is, how crowded it is, the likelihood of getting an infection, and of course the stares and insensitive comments.
Aria’s medical issues require use of a wheelchair, diaper bag, suction machine, pulse oximeter, supplemental oxygen, and G-tube feeding supplies, along with multiple medications. Remembering all that plus how to use it all can be stressful, especially when you have to factor in everything else. When we go out in public, my mind is constantly going, and sometimes I’d rather choose to just stay home where I know she’s surrounded by everything she needs. But I know she wants to go out and needs to go out, so we do. Opportunities for socialization are very important to all of us, but they don’t happen often, and that can stress all of us out, especially Aria.
Things that help minimize this stress are:
- Planning or calling ahead to have as many details as possible set up for success
- Packing up hours or even a day before so you have time to make sure you aren’t forgetting anything
- Leaving early to allow time to find accessible parking or park the van
- Having a short, polite and educated summary answer ready for curious people
- Always carrying hand sanitizer or travel anti-bacterial wipes
I know it seems like a lot, but it’s better to know what you’re getting into than to show up surprised, which will cause even more stress.
Being a Normal Family
Being a normal family, to us, is something that means leaving out all the medical stuff. Often times I get stressed about how very little time we can put into just being a family. We don’t vacation, we don’t really do family outings, and if we are together away from home for an extended period of time, it’s usually because we’re at the hospital with Aria. I don’t know about you, but that’s not my idea of a vacation.
We do try, sometimes very hard, but various factors like Aria getting sick prevent us from following through. Sometimes I think it would be nice to make a day of museums or parks or other local attractions near us, but Aria’s health usually prevents her from enjoying more than one or two events outside our home. This forces us to choose wisely, but our days trying to do normal family activities outside our home are usually cut short.
The way I try to minimize this stress is by trying to do family things at home like board game nights, movie marathon days, or visits with other family members. One other stress minimizer for us is going to church together. Our faith is very important to us, as is going to church as a family. That’s one thing we try not to compromise, so long as Aria’s health can stand it. We are fortunate to attend a church local to us that streams its services live online, so if Aria is not feeling well we can watch the service online together as a family.
Mortality is another stress that I, along with most if not all parents/caregivers of children living with special needs have, though we don’t really talk about it. When I say mortality, I mean both Aria’s mortality and the mortality of us as her parents. Thinking about possibly passing away before Aria stresses me out a lot. Even though we have a great support system with a number of relatives who would take good care of Aria, it still scares me that someone else could be taking care of her on a full time basis. I could write the best “How to Care for Aria” notebook ever and still be stressed about others caring for her.
Even more than that, I stress about Aria’s mortality. No parent ever wants to outlive his or her child, let alone think about the very real possibility of outliving a child. However, it is something many caregivers of children who are medically fragile think about often. It’s a difficult thing to try to make the best out of your child’s life when her mortality is looming in the back of your mind, especially when she’s in the hospital fighting off a nasty pneumonia or recovering from emergency surgery.
The stress minimizer here is reflecting on Aria’s smiles, being informed and prepared. We can never be 100% prepared, but we can try our best, and if that minimizes the stress at all, I’ll take it.
Other things that can help minimize stress from parenting a child living with special needs are:
- Venting to a trusted friend/family member
- Keeping a journal or blog
- Taking up a hobby
- Spending quality time with my child and family
- Finding online support groups or blogs of parents of children living with special needs
- Treating yourself to a favorite thing, such as new shoes, dessert, or a sweet drink
Caregiver stress is okay to have and deal with. Caregiver stress does NOT mean you don’t love your child, and it does NOT mean you’re not capable of caring for your child. If you’re feeling stressed seek help from your family, community, or a professional.
As a mother, I am prone to worry, and often this stress becomes a burden, but in times of tension, people often find greater strength to persevere. Use it to your advantage. As Ellen Glasgow said, “The only difference between a rut and the grave are the dimensions.”