My heart is heavy. This is a difficult post to write. Even as I write it, I question the wisdom of positing it, due to fresh and raw emotions and it may ruffle feathers. I am saying right now that I am not writing this to make a political statement, to make anyone feel bad, to change minds, or anything like that. I am writing it because I started tbispouse.com with the intention of being real and expressing the good and bad (and fuzzy) of the life of being a caretaker.
First, I need to give you the backstory and the issue. Then, I will discuss why I am writing this on this site, a blog about being a caretaker of someone with a TBI and how that impacts my life.
I have only 1 sibling, a loving, wonderful sister. I am 7 years older than her. For most of our lives, we have lived in separate households and in different parts of the country. These factors made having a strong sisterly relationship difficult especially when we were younger – when I was a self-absorbed teenager and she was a young girl. We have worked hard over the past 10-15 years to foster a relationship now that we are older and age does not matter as much. Because we still live in different states, seeing each other is a rare occurrence.
My sister is having a wedding which is a happy and joyous thing and hopefully a one-time event. However, she is planning and having the wedding during the pandemic, COVID-19. I desperately want to be at my sister’s wedding. If there are but a few moments in our lives when I should drop everything and be there for her, this is one. I am a bridesmaid in her wedding and my daughter is a flower girl. Not only do I want to be there to witness her marriage but I want to see our other family, who I don’t often get to see either. I want to meet her fiance, who I have not yet met in-person and his family. I want to reconnect with her dad (my step-day) and his family, who I haven’t seen in more than a decade. Many of the above mentioned people have never met my daughter, Eva, and this is an excellent opportunity for that.
As a caretaker, I have to consider the risks and consequences my decisions will have upon my little family. I do not live in fear but I do believe that I need to be cognizant of more than myself when I am weighing the impact things I do may have upon my husband and daughter. I would hope that most people do this but I think it is an ever present, elephant in the room if you will, thing for us caretakers of the world.
With this COVID world we humans live in now and the uncertainty of the impact of COVID, who it impacts or doesn’t, who is high-risk or not, and so on, I am being forced to weigh the risk between attending my only sister’s wedding and the safety of myself and my family. The implications of attending a 150 person wedding, with little-to-no precautions being taken at the multiple wedding-related events, with guests flying and driving in from all over the United States and world, I am not sure I can risk it.
I have had to make many decisions, both large and small, with my husband being the priority. It is a pill that is sometimes hard to swallow as a caretaker. There are times when it would be much easier to let myself have a pity-party and blame my declining to do “x” thing on my husband. To let myself bemoan him and his burdens. To tell myself that it isn’t fair, that he always comes first, what about me. Whenever I find myself doing this, I try to step back and evaluate “x” thing in a logical manner, not an emotional one. I ask myself, “What is the right thing to do based upon the data, facts, and information I have at the moment.” I also remind myself that I love my husband, that he is one of the best things that has ever happened in my life and continues to be, that he is my emotional bedrock as much as I am his, that he is my best friend.
As I consider this specific situation, the issue is not solely with my husband, who is high-risk. In this case, I must take into consideration that I or Eva may get COVID and not do well with it. I do have A type blood for example. If I were to attend the wedding with Eva and bring COVID back home and any of us were to get very ill or die, living with the knowledge that I could have chosen differently, in this case, would be excruciating. It is a very different situation were I to get COVID from grocery shopping or going to work and getting my family sick in this way. While it would be tragic and horrible, I could live with myself.
As a caretaker, if I get sick, taking care of me, Eva, and the household falls upon John. This would be a task he would do but would not do well and the longer it went on, the worse it would become. If he and I get sick, who takes care of Eva? If we all get sick, who takes care of us? If our mom, who lives near John and me, plus John and I get sick, who takes care of her?
I have not yet decided if I will attend the wedding or not. I am hoping that the states will take stronger measures to lock things down, that people will begin to wear masks and take larger precautions, and maybe the numbers will start to decline. But, with only a month to go, it is not looking good and this is why I am an emotional mess at the moment.
As always, please leave a comment if you have questions or feedback. Stay safe. I am sending love and positivity out into the world.
TBI Spouse (and Others) 
I’m type A negative, also. Don’t know if it’s that big of a risk factor, but it’s always in the back of my mind. (You might be too young to have experienced this, but 40 years ago when I lived in Colorado Springs, my siblings and I, all A negative blood types, were often called in the middle of the night to donate blood to accident victims. My sister says it doesn’t happen anymore.) It’s a fairly rare type of blood.
As far as the wedding, you have to follow your guts. This isn’t nearly as big an issue, but I had a call from old friends of 50 years who live in Manhattan. They are coming here for a family wedding in August and wondered if they could stay with us. I thought about it long and hard, especially because they hosted me a year ago and gave me wonderful tours of the city. But times change. And I couldn’t answer just for me. Kazuo also lives here and has been very careful about exposure. We decided we would meet them for a walk, but we cannot host them in our house. They stated when they asked that they “would still love us” if we had to say no, and we said no. Sheesh. It’s a difficult decision. But you live with someone who is high risk, and you have to take that into consideration.
Sending best wishes, whatever your decision.
Thank you so much Judy. It is good to hear other stories and input.