What is a Caregiver?

What is a caregiver? When I typed in that question into “Google” search, this was what I got: “A family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.”

Does anybody REALLY know what all that entails? Doesn’t sound too bad, right?

In my opinion, I think that it takes a special heart and personality to be a caregiver. Who would willingly want to do this for their living? Who would want to watch people who struggle to do things that we don’t even think twice about? Using the bathroom, taking a shower, getting dressed, eating, and even BREATHING.

A caregiver should be a patient, kind, loving person.

A caregiver should be willing to do what is needed for the person they are supposed to be helping, without complaining or making it seem like a big deal.

I am by no means claiming to be any of these.

If the caregiver is hired and not a family member, they will come by at set times or as needed. They have it easy, being able to leave. If the caregiver is a family member, that might mean they come and check on their family member once or twice a day and help them with some things, and they get to come and go as they please. A family member could also be a spouse, sibling, parent, son, or daughter. It all just depends on what the condition of the person in need of a caregiver is. For me, I am the full-time caregiver for my wife Candace, who suffers from multiple auto-immune diseases that have been life-threatening and without saying, super scary to witness.

I had no idea what I was getting myself into.

I had no idea what it REALLY meant to be a full-time caregiver.

I had a choice and I chose to be the full-time caregiver for Candace. I would rather be home to keep her safe than have a stranger come into our home and take care of her periodically, and to be there in case of an emergency. There was no way I was going to put her in a facility either. I had a 40-hour Monday through Friday job. I was working on gaining more experience to find better jobs in the future. You know, trying to climb up the corporate ladder, if you will.

There was no question about the choice I made. After all, if you really and truly love your family, you will do anything for them, right? I wanted to show my unconditional love to my wife, and fulfill my vows to her, and love her in sickness and in health.

My transition from working full-time in an office environment and then becoming a caregiver was probably one of the hardest things I have ever done. Even harder than when I went through basic training and served for 4 years in the Navy. I can remember having so much anxiety. Between Candace and the kids and the dog, it was a lot to manage for one person. I remember breaking down in front of Candace, and I also remember breaking down when nobody was around. I remember praying so hard for God to help me make it through that very difficult time. I was mentally, physically, emotionally, and spiritually exhausted and have suffered from ongoing anxiety even before I became her caregiver.

But lucky for me, I am a quick learner. I was pretty much forced to learn how to cook. I had to learn how to be creative, which I am not very good at. Before Candace couldn’t anymore, she did all the cooking and I did all of the cleaning. And man, can that woman cook. I absolutely loved eating the things she made. I miss those things a lot too. My cooking just isn’t her cooking. She gave me her recipes and I helped her in the kitchen, and she gave me some on-the-job training starting when we first moved in together. I don’t know what I would have done if she didn’t do that for me. Probably starve.

I had no choice but to be more involved with the kid’s things: school, doctor’s appointments, etc. It’s not like I never wanted to, it’s just I never thought I would be doing it on my own. I have felt like I am a single mother. I don’t have any biological children of my own, and when I married Candace, I got 2 kids instantly. There are times where I had to take the kids somewhere on my own or do something on my own because my wife couldn’t physically get out of bed or hasn’t had the stamina to. School functions, doctor’s appointments, making sure I cooked food for everyone to eat. We used to be able to tag-team these things. The kid’s dad travels for work usually, and he only has them on the weekends, and sometimes not the full weekend. So usually I am on my own and sometimes get some help from Candace, at least on the decision-making part.

I have officially been Candace’s full-time caregiver since February 4, 2019. At the time I started being her caregiver, I knew NOTHING about anything medical. I don’t have a medical background; I have a business management background. I know how to do CPR, but I am not a paramedic or EMT. The things that I knew were things taught to me by my wife during the time we have been together.

She has taught me about her diseases, and we have also learned a lot of things together from doctors and doing our own research. We have done our best to manage her symptoms and work toward her body healing, so that we can enjoy life again and do the things we love to do. We want to go hiking. We want to travel abroad. We want to do things with our kids when they are not in school. We want to live life as a normal, LGBTQ couple.

She has taught me about Myasthenia Gravis, Lupus, Stiff Person’s Syndrome, Mast Cell Activation Syndrome (MCAS), and Hereditary Angioedema (HAE), which are her most life-threatening diseases. She also deals with issues with her autonomic system (blood pressure, heart rate). Sometimes I receive comments from doctors and nurses about my knowledge about Candace’s medical needs, and how helpful I am, especially when she was in ICU. I give all the credit to Candace, who taught me what I know.

All my wife’s doctors have said that they haven’t seen any patients “like her.” She has so many rare and unique things going on with her. She takes so many medications, and goes through so many treatments, and even more are being added as time goes on. There was a point in this last year that we thought she was going to get a bone marrow transplant. The doctor decided not to go forward with it because there is no real protocol for someone with more than one auto-immune disease. If she had only 1, it would be a no-brainer. But that’s not the case for us.

All we can do is take things day by day. Sometimes our days are filled with multiple doctor’s appointments, many hours on the road (one way), or whole days are taken for treatment. We have only been married for a year, but we have been through so much more than anyone who has been married for at least ten.

I have no regrets about the choice I made to be my wife’s full-time caregiver, and I have no regrets about anything we have done together. We are a great team and we can get through anything together. Our mantra is “It’s only for right now, it’s not forever.” That’s what we hold onto to make it through the tougher days. I am hoping we can do the things we once did as a couple, and as a family.