The attitude of gratitude is the highest yoga… Yogi Bhajan

Posted by Elizabeth Forst in Life After Paralysis on November 03, 2016 # Caregiving

November is a time for giving thanks and being grateful but not just because of Thanksgiving but also because it is Caregiver appreciation month. Caregivers not only keep us healthy and alive but also provide socialization, encouragement and overall camaraderie through the daily drums of life in a wheelchair. The amount of time I spend with my caregivers is more than any other time collectively with friends or family – 4 to 5 hours in the morning and 2 hours in the evening every single day. Over the last two years, I have worked extensively with over 25 caregivers including CNA's, LPNs, personal assistants and family members who collectively take part in the caregiver role. It's been a crazy ride and I have tons of stories – I always joke that I need to write a book about these experiences and it would probably make the bestseller list.

When I was first discharged from Craig Hospital in Denver Colorado two years ago, the recommendation was to utilize a national healthcare company as they are more reliable and will understand my needs better than a public care company. I chose Maxim Healthcare. Through that process, I learned to verbally direct every component of my care including bowel and urinary care, dressing, washing, makeup, jewelry, and food … you name it, I can direct it.

The first few months with Maxim were the most painful months until they finally got it right and paired me with one special lady that is now on my team. Spinal cord injury patients are like unicorns – we are physically and emotionally demanding, and require very specific cares like range of motion, bowel programs, suprapubic catheter care and wheelchair positioning. Yet the caregivers sent to someone's home from a national home care agency have experience with elderly facilities where the clients do not get out of bed and are less active in the community – a dramatic difference from myself who is a young, active female integrated into my surroundings. With this being said, I was thrilled with the day that I was able to close that contract and create my own team of five wonderful women – this team is my glue and I am forever grateful for their presence and dedication to keeping me healthy and happy in my life in Denver. I would truly be lost without them.

In the spirit of caregiver appreciation month, it is therefore appropriate to highlight our experiences together. Debie, Dagny, Linda, and Janelle – my team – get me ready every morning starting at 8 AM with shifts running 4 to 5 hours depending on what cares are needed for that day. We work as a unit and coordinate schedules on a weekly basis. Aside from the daily get up and go routine, the girls travel with me to destinations all over the country and world. I cannot fly alone and they accompany me, safely boarding on/off flights getting me to my destinations in a timely and safe manner all the while having fun with the adventure of it all. With their help, I have visited New York City, Los Angeles, San Francisco, Charleston, South Carolina and Cozumel, Mexico. I have rolled down the high line in New York City, meandered around the buskers in Venice Beach, California, slung over hot sand dunes to get to the beach in South Carolina and squeezed into tight fitting dive wetsuits and climbing harnesses in order to go scuba diving in Mexico – these are just a few of the many amazing feats my caregivers do to help me live my life.

Aside from traveling, the girls always put in an extra effort to help me live a life of independence and living without the needs of my immediate family has been crucial in attaining independence. My gal team knows how to organize my in-home technologies and is always a phone call/ride away if I have any emergencies. They take me to all of my appointments, assist in transferring me out of my wheelchair for various therapies and are always up for enjoying a professional sports game or attending music/theater events. They water my plants, collect my mail and take care of my apartment when I am away. They nourish me with good healthy wholesome food and even oblige my interest in following ayurvedic ways of life – even if this is foreign to their own practices. The list goes on and I could gush further, but I will end by saying "Namaste" from the bottom of my heart Debie, Dagny, Linda and Janelle for helping me be me again.

Keep on keeping on,

EB Forst

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.