The day my son’s accident happened (leaving him paralyzed), I was already going through incredible stress due to other extremely difficult events in my life. My best friend was taking me out that day for an early birthday present so I could relax and unwind if just for a few hours. Then the phone call came that changed my life forever.
Once we arrived at Shepherd Center in Atlanta, Georgia, I soon began to understand what being a caregiver really meant. It was a daunting role to say the least. In spite of quite a bit of medical knowledge and having done some previous caregiving, I suddenly found myself in a world I knew nothing about with so much to learn and do. I was afraid I couldn’t meet the demands of caregiving with my health issues. But I had no choice. Any other options were out of the question. Thus began my journey of learning to be my son’s caregiver.
The number of hats a caregiver wears probably outnumbers all the fancy hats that the Queen of England has in her closet! But there is nothing fancy about the hats we wear. They are practical and worn out of necessity. I wonder how big our hat closet would be if there were a hat for each of the roles we fulfill. Below I have taken each of the letters in caregiver to define some of our many roles. If you could design a hat for each role, what would they look like?
C – Caregiver – How can I begin to list all that this word encompasses? Every day you are providing personal and medical care, emotional support, physical help, cooking, cleaning, and doing laundry, as well as assisting with activities of daily living. You are constantly multitasking and need to embrace any help offered you!
A – Advocate – Your loved one is your primary concern. You learn very quickly for them to receive the best care possible, you have to advocate on their behalf in multiple areas. I know for many that being assertive is not part of your nature and this can be hard to do. But as you become more competent in your abilities, you will hopefully feel more capable and comfortable in speaking up and out for your loved one. There are support groups and organizations that can help you learn how to best advocate!
R – Researcher – For you to be able to advocate requires researching on your part so you are more familiar with your loved one’s medical condition and their many needs. Take time to learn as much as possible and don’t be afraid to ask questions. Today, you can google just about anything on the Internet!
E – Educator – First you learn and then you teach. Whether it's friends or family members who are willing to help, or the medical professionals that are involved in caring for your loved one after rehab, you are constantly educating people, and in the process raising awareness about spinal cord injuries. The more you learn, the better teacher you become!
G – Gatekeeper – Though visits with friends and family are so important while in rehab, you need to make sure that your loved one does not become overwhelmed and exhausted by their visitors. Be observant and monitor when it is becoming too much for them. If you have trouble asking visitors to leave or come back later, enlist the help of the medical staff. They are usually willing to help on behalf of their patients. When you go home from rehab, this is still very important. Remember to always put your loved one and yourself first!
I – Inspector – There is quite a bit of inspection you do post injury. Inspecting your loved one’s skin for any changes that could indicate a potential problem, such as, pressure wounds are paramount. Your eyes are also constantly inspecting your surroundings for any wheelchair hazards. You now view the world differently and are beginning to recognize how unfriendly it can be for wheelchair users. Don’t be afraid to be a voice in the community if you see things that are issues. You are not only helping your loved one but the spinal cord injury community as well!
V – Vehicle Driver – I was fortunate enough to be able to obtain a modified van for my son after he was injured. Transferring him in and out of a car was not something I would have been able to do. Once he was home, there were multiple trips to doctor’s appointments, therapy sessions, and errand running. Whether you have a modified vehicle or help your loved one transfer into one, the constant trips can be wearing. Make sure you don’t plan too much when you are first out and about. Be prepared for a change in plans too. Expect the unexpected!
E – Engineer – Whether you think you have the skills or not, you soon find yourself having to learn about the needed durable medical equipment. Depending on the equipment, you will have to learn how to use it, put it together, dismantle it and/or even repair it. As difficult as some of the tasks can be, I found it empowering to accomplish tasks that I have never done before!
R – Record Keeper – There is so much information and medical records that need to be collected, updated, and organized. Keeping detailed and organized files may seem like a daunting task but the efforts will be well worth it. Your life will at least be less complicated and you will feel more in control of your situation. If you have difficulty with organizing, don’t hesitate to ask a friend who has great organizational skills!
Having entered the world of caregiving, I have been blessed to get to know and meet some of the most amazing caregivers ever! Yet they often feel they are not doing enough for their loved ones when the truth is they are not doing enough for themselves. You are probably changing more hats in one day than a person changes outfits in a lifetime. I know this may seem a bit of an exaggeration but I hope it drives home the point that as caregivers you are so much more than what that word means in a dictionary. I hope in your hat closet you have at least one hat that is to be worn when you are relaxing or having fun! You don’t just deserve it. You need it!
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The opinions and experiences presented herein are for informational use only. Individual results may vary depending on your condition. Always consult with your health care professional. This individual has been compensated by Bard Medical for the time and effort in preparing this article for BARD’s further use and distribution. BMD/BMDA/0816/0277