Ask anyone what their idea of happiness is and you are likely to get many different answers. For most of us, happiness comes in the form of family or friends. Others find happiness in the car they drive, or the world they explore. Still, for others, happiness comes in the simple pleasures- cooking, crafting, enjoying art, volunteering. But, for some of us, these joys can seem out of reach because of a physical disability, cognitive impairment, or limiting disease or age.
About the blogger- My own experience with caregivers…
I have a spinal cord injury. I’ve been a C6/7 quadriplegic since I was 15 as the result of a bad car accident but now that I am 25, I can pretty much say that I have a good handle on life for the most part.
Now, I thought I knew practically everything I needed to know about my situation- I knew that I should stretch to keep from getting contractures, that bone density and proper bladder maintenance are important, and that if I wanted to stay happy and healthy, I needed to be active and carry on with my life despite my injury. In 10 years I have learned a lot but how to seek, hire, and utilize a caregiver wasn’t one of those lessons. Until recently.
Three months ago, I had the amazing experience of becoming a mother. I have to say that carrying a baby in my tummy was probably more challenging than the average woman but caring for my son as an infant is by far the hardest, most enjoyable job I’ve every had. My son, Evan, is my life and a blessing I never thought I’d be able to experience. He makes me smile with every milestone, every coo, and every playful grin. However, with the joys of a new little one came the hard work and self-sacrifice along with it. Gazing at the piles of laundry needing to be washed, the dishes in the sink, and with my husband exhausted and me recovering slower than I’d like to from the pregnancy, I decided to take the leap toward hiring assistance.
Acknowledging the Need
A caregiver was an element I avoided in my life as a spinal cord injured person. There were so many things I could still do on my own (even if they did take more time) so I didn’t think hiring someone was necessary. To me, independence meant doing as much as you could on your own and then asking for help. Being a parent wouldn’t be a problem because, just like everything else, I figured out how to adapt. However, I quickly learned that there is no solution to sleeping two hours at a time, fixing bottles at 3 am, recovering from pregnancy AND taking good care of an infant when one has limited use of hands, no use of legs, and a delicate balance of health. I especially didn’t anticipate how difficult it would be to keep up with my own care nor how homebound I would be with a little one.
Since hiring a CNA, I have discovered that caregivers, whether they are CNAs, PCAs, or any other type of assistants, are more than trained individuals who help you stay healthy; they are instruments of independence and wellbeing. My assistant helps me keep ahead of the housekeeping while enabling me to care for my self and my son in the way I would like to. She helps me do my exercises, and when I want to hold my son, she hands him to me. She cares for him when I need a break or need to take a shower (moms know how precious those moments are!), helps me take him to the park, and when there is a task I need help with, she is always there to offer hand. Yes, many of these things I was able to do on my own but I could not do everything and take good care of my little one.
This is one of my shameless plugs but at AdvisaCare, quality care is more than keeping our clients healthy- it’s helping our clients live happy, despite those limitations. Whether you like to go shopping at the mall, fishing at the lake, or simply sit on the couch and read a book without worrying about getting up to answer the door or get a glass of water, our care providers are there for you. We help you live better so you can do what you love!
Quality of Life = Independence?
For many of us who strive every day to overcome our disabilities, hiring help seems to be the opposite of independence. However, this article from Craig Hospital makes a good point: when it comes to being self-sufficient, “hang on to the activities that really matter to you, and delegate or negotiate away the ones that don’t.” In other words, asking for assistance with the daily activities such as getting dressed, fixing a meal, or grocery shopping should not be looked at as a cop-out. What is more important: being able to do what you love or sacrificing what you love in order to do everything on your own? When it came to being a good parent, I had to ask my self this same question.
Don’t make the mistake of thinking that what I am describing is dependence, though. As individuals, we still have control over our lives and a responsibility to live them to the fullest. Therefore, we must be interdependent, cooperative, and empathic.
Learning How to Work Together
Just as a person has to learn how to be self-sufficient, one has to learn how to be interdependent and that, just like parenting, has a learning curve. Learning how to ask for help, how to keep organized, and how to keep your caregiver from burning out is just as important as seeking help. Some things to keep in mind when working with an assistant are:
- Know exactly what you need help with and how much (make a list!) and be clear about the job duties
- Understand the amount of time that is really needed (I hired a full-time CNA when I really only needed a part-time, for example)
- Be open to explaining your specific needs (because everyone is unique) and be flexible
- If you don’t have a routine, now is the best time to start one
- If you plan to deviate from the routine (say, you plan on going out every once in a while with friends), be courteous and give your caregiver a “heads-up”
For a more detailed article on the subject, click this link (http://www.craighospital.org/SCI/METS/personalCareAssist.asp) or check out the Craig Hospitals resources section.
So, here’s the fun part: Now that you are one step closer to interdependence, make a list of all the things you have been wanting to do and get out there and do them! In the second week of having my caregiver, I was able to spend a wonderful day with my little guy at the park, without worrying about losing my identity as his loving mother. A couple days later, I was able to take care of some important errands while my assistant helped me get my son in and out of the car. For me, I really wanted to take my son to the park but I wasn’t able to before I had my assistant: I wasn’t able get him in and out of a car seat or stroller safely. Before I hired my assistant, I was a stay-at-home mom, literally all the time, unless I was able to convince someone to help me get out of the house. Simple things my caregiver helps me with but because of her I am able to reclaim my role as a responsible spouse and caring parent. Sharing in the work has become more enabling, and not disabling like before.