Stacey and NathanielMy journey as a caregiver started almost three years ago on July 28, 2018. I will never forget the call that no parent wants to get. My son had been in a motorcycle accident and I needed to get to him as soon as possible. Nothing could have prepared me for what was about to happen. My life, as I knew it, would be changed forever.

My son had just come back from his second tour in Afghanistan and decided to buy a motorcycle while he was there. He absolutely loved that motorcycle and even hauled it all the way to Florida from North Carolina to show his friends and family. He rode it everywhere he could. He was an experienced driver. One night coming home from hanging out with friends, someone hit him and left him on the side of the road to die. Thankfully, three nurses came by and saw the motorcycle on the sidewalk and searched for my son. When they found him, they immediately called 911 and started CPR.

I knew that they had to do Power of Attorneys when they were sent overseas. I thought that this would be a great thing but the POA was nowhere to be found. In order to properly care for my son and his finances, I had to get guardianship over him. What a journey that has been all in itself. That journey can wait for another day and time but please know that a POA would have made my life so much easier.

I was and still am living in Florida and my son was a Sargent in the U.S. Army stationed in Fayetteville, North Carolina, at Fort Bragg. By the time that I got to North Carolina, most of my family was already there. The ER doctor took us into a separate room and told us that Nathaniel had less than a 1% chance to live through the night and that we should say our goodbyes. My world came to a screeching halt. They transferred him to an ICU room so that he could have the best care possible. By the time they transferred him, all of his buddies and friends lined the hallway to the ICU waiting to take their turn to say good-bye. If I had to guess, I would imagine that at least 150 people came in and out of the room over the next several hours. I began asking everyone for prayer and asked them to ask anyone that knew that would be willing to pray. Nathaniel made it through the first night and then the second night and then the third night. He had tubes sticking out of him everywhere and they were doing their best to keep him comfortable. He was in a coma but I kept telling people to talk to him. His coma lasted for approximately 30 days. I was starting to have more and more hope as each day passed. Little did I know that this was the easy part.

The hard part began when they transferred him to Florida so that he could be close to me so that I could look over the care that he was receiving. He spent another 30 days in an ICU at what was supposed to be a rehabilitative hospital. They did little to nothing to give him physical rehabilitation. I would consistently ask for therapy but because he had a trach in, they were not keen on doing much with him. Eventually, he began breathing enough on his own that they were able to take the trach out. I will never forget that day. It seemed like we had crossed a finish line. But it was a short victory. We could not find a rehabilitation center that was willing to work with Nathaniel because they all said that he could not participate in the therapy enough for it to be helpful. Even the VA denied us.

In a last ditch effort, we contacted a rehabilitation center in Kentucky. They accepted him and we spent the next three months at a rehabilitation center in Kentucky called Frazier Rehab. By this time, I had no job, my family was torn apart, and I had nowhere to live. I was told that if I went to Kentucky to be with my son that I would come home to no family. I would be spending each and every day with Nathaniel learning how to care for him. The hospital room that we were in had a hospital bed for Nathaniel and a small bed where I slept. Everything was a challenge. Down time became a dreaded time and I walked the halls of the hospital most nights trying to keep my mind occupied.

I had been in contact with Congressman Bilirakis who, I was told, was a big supporter of our troops. By the end of the three months in Kentucky, the Congressman was able to get us a bed at the VA in Tampa, Florida. Without his assistance, I do not think that Nathaniel would have ever been able to get in to the VA, which, by the way, has the best polytrauma unit in the country. We spent nine months at the VA in Tampa before TriCare decided that he was not making enough progress and we had to go home. What home you might ask? Because I didn’t have one and Nathaniel’s home was in North Carolina.

So started my search for a home that was handicap accessible. Absolutely none to be found. I found the closest thing that I could find close enough to the VA for doctors appointments and therapy that I knew was going to have to take place and we bought it – Nathaniel and I. The VA got all of our supplies together, got a bed ordered and helped us set up the house the best we could to make it wheelchair accessible. As of today, we are still waiting on his shower to be redone because I have not been able to get the VA grant. Shower days are so anxiety filled that they are the worst days of the week for me. Between my anxiety and Nathaniel’s anxiety of getting him in and out of the shower, we are both completely exhausted.

When we left the VA they told me that I should not enroll Nathaniel in any therapy. He didn’t need to live a life of therapy because he was never going to get any better than he was at that moment. He had no movement in his legs or arms and could barely speak a word. I was not going to settle for that. I knew that Nathaniel had it in him to get better than that. I began my search for therapy for him. I called and talked to anybody who would listen trying to get therapy for Nathaniel. I finally got word that Tampa General Hospital would be willing to work with him. We started therapy immediately – physical therapy, speech therapy and occupational therapy. Nathaniel passed every test they gave him and exceeded even my own expectations. Now, that is not to say that he can do anything by himself. I have to care for him in every way possible. He does not have the ability to do the normal things in life that we all do without assistance – brush our teeth, get ourselves dressed, shave, eat without assistance, etc.

I am still learning, day by day, how to properly care for Nathaniel. I also have to work to pay my own bills, so to say it’s a struggle every day is putting it mildly. My former employer allows me to work from home one day a week and in the office two days a week so I don’t miss much with Nathaniel. I have found an amazing caregiver to assist me with Nathaniel and we have become our own little family unit. Nathaniel loves her to death and she takes such good care of him. I wear a lot of hats in this house – caregiver, financier, babysitter, dog walker, chef – you name it and I do it. But I wouldn’t change a thing. I wouldn’t miss this time that I truly believe God gave us. I have met some amazing people on this journey and I know that I am not through by a long shot but all I hope is that I meet as many nice people in the future as I have met so far. People who are going through the same journey but in a different way with a different injury or illness. People that have just befriended me at times when I needed it the most. People who care for Nathaniel just like I do.

I live in a small town an hour outside of Las Vegas, Nevada. I help take care of my husband, Randall, who is a disabled veteran. He served 22 years with the Army National Guard. He is also a Medically retired first responder of 18 years. We have been married for 30 years and have 6 children and 5 grandchildren.

In 2006, after a 1 ½ year deployment to Iraq, I started to notice changes in him. When I reached out to others for help during that time, I was always shut down due to him being in the National Guard. It was hard to find help back then for my husband. The PTSD affected his employment as a first responder as well as our family.

Peer support is so important! I went 12 years without even knowing there were support groups out there for the caregiver. I felt like I didn’t belong since I didn’t have the official title of caregiver through the VA. Although, I was still giving my time and energy, taking off work, not getting enough sleep to take care of him. I didn’t understand the military system. Please speak up. You may think you have little to offer someone. What I would have given 10 years ago for someone to say, "Hey, you’re going to be ok through this." We need to support each other. Being a caregiver to a veteran and/or first responder puts a lot on you. I have had to raise 6 children mostly by myself. I have gone to sporting events, band concerts, dance recitals, and even our own children’s weddings by myself. I can cry and become bitter or I can keep my chin up and take one day, one step at a time, and just hope that tomorrow is a new day. Having the support of a few good friends, family, and now the caregiver community has helped to bring a new light of hope into my much-needed crazy world.

Being in this group has helped me to see, and to understand, that I am not alone, like I felt for so long. Being chosen for the Caregiver Mental Health and Restorative Weekend and getting to meet other people going through what I was and finding out I was not alone was so amazing! I came back with so many new tools to use in my life. Some things we don't always want to think of but is a must, like funeral planning, to know how to present ourselves for a job interview in 30 seconds or less, and even breathing exercises, and a trip to Curves. The group was small, which I am grateful for because it gave me a safe place to be myself. It was a weekend about the caregiver and what we have to bring to the table. Most of us there found it hard to look at ourselves and rediscover who we really are, especially when we have put so much of our life on hold for our vets. We had amazing ladies there that were Vets themselves, who told of their husband’s services, and not of themselves, but when their stories came out, they were amazing, and inspiring. We had personalities that ranged from quiet as a mouse to "over the top and owned it", and they were all amazing in their own way!!! I felt a connection to each of them. They inspired me, lifted me up, and helped me to know, I AM NOT ALONE IN THIS JOURNEY OF CAREGIVING!

Thank you Rondalene for sharing your words of wisdom with us! We are so
blessed to have you in our tribe!

1. Have you had peer support during your caregiver journey?

Until recently, not much. I had a couple of military wives over the years I was close with and who understood the journey, but things outside of my control happened and those relationships no longer exist, which lead to me feeling even more isolated and alone. Currently, I feel like I have a great peer support group and I look forward to increasing that base and making the most out of those relationships.

2. What value has peer support been for you personally?

I cannot put a value on it. I didn’t realize how much I needed a peer support group until I was blessed with one. I’m much more comfortable with my journey now. I am relieved to know that there are many others out there in similar situations and I can reach out to them and they will get it. I had no idea how much I needed a peer support group, so it is invaluable to have.

3. What benefits do you think a new caregiver could receive from a structured peer support program?

A voice. A feeling of belonging. A place for resources. A place to vent, to obtain suggestions, solutions, or words of wisdom. A place to be heard and seen, if you will, a place to be loved and respected and sometimes cared for. A place to be able to regroup, to focus on yourself, and a place to be refreshed.

4. What words of wisdom can you share with other caregivers?

Keep going. Caregiving is hard. Life is hard. There are always going to be challenges and setbacks, but try to focus on all the positives in your life. No matter what your journey is, in that moment there is always a positive. Find the positive(s), focus on it and remember to breathe. Find your “tribe”, because you are NOT alone. Take time for yourself, do not try to burn the candle at both ends and do not feel guilty about taking time for you. And remember you were given this life because you are strong enough to handle it. You got this!!!!

Thank you, Becky, for sharing your words of wisdom with us! We are so blessed to have you in our tribe!