Being a caregiver to your spouse is not an easy job to take on. It is emotionally, physically, and spiritually exhausting. There are so many things that go into it. The care giving alone is a hard job, but when it is your spouse, a separate set of struggles are brought with it. Your spouse is supposed to be the person who helps you keep a home, build a family, and be your other half in this crazy world. Can Vince do these things for me? Mostly, yes. He is my emotional rock. He keeps me sane in this crazy world. Having him there to go home to at the end of a long day, having him to hold me when I just need a hug to make it all better, and having someone who can make me laugh through my tears are all things that I wouldn’t change for the world. He even helps keep us going financially. Without his social security, we would not make it on our own as my income alone is simply not enough to live on. I try to remind him of this whenever he says he feels bad that he can’t work and support his family as the man of the house should.
I don’t like to admit it too often, but when your spouse is disabled, it can leave you feeling alone at times. Even after all the things I just mentioned that he does for me, our marriage is still different. It is not your traditional relationship. Care giving brings a whole new set of issues, stresses, expense, and emotional toll that can be hard to understand to people on the outside looking in. I myself live with Anxiety and ADHD and it gets the best of me way more than I would like to admit. I struggle to keep myself in check and to have patience with Vince day after day. I can’t feel his pain or his numb limbs. I don’t know what it feels like to have to use canes and a walker at the age of 34. I do not feel the endless needle sticks. I don’t have to keep track of carbohydrate counting as closely as he does and worry about feeling crappy if I am high or low. I do not have to accept that I can’t work, or go to church, or see the family whenever I feel like it. Most of these struggles Vince deals with are things I can never take on and feel for him. I wish I could take all these things from him so he could have a normal life, but I can’t, and that is what makes it so hard for me to be understanding and patient day after day and frustration kicks in on my part more than I’d like to admit. As much as I do know more than anyone what he goes through hour by hour, I will never know it first-hand.
This is why I decided to wear his insulin pump. He just got a new, upgraded pump so we now have two and it was the perfect opportunity for me. Being with Vince almost 24/7, I thought I understood. I thought I knew why people get diabetes burn out. I am always reminding him of things he needs to do to keep going. I even have to do all his injections for him. Due to his complications, I am extremely involved with his day to day care and safety. I thought I surely understood. I live it with him and watch his blood sugars as closely as he does, right? Well, wearing a pump 24/7 for 3 days gave me a chance to get a glimpse into what he deals with. It is such a small part of all the things he has to deal with day after day, but it is something I can do in order to see what he is going through. I don’t think a lot of people understood why I decided to do this. I tried to explain but again, no one quite understands our life as a whole.
Now that I am at the other end of the needle, I understand a bit more fully than I ever thought I would.
With the help of our awesome pump trainer and nutritionist, I loaded up the pump with saline and prepared my belly. I was scared to push the button. I have done it a thousand times on Vince. I can do it with my eyes closed. But now the needle was going into ME! She placed her hand near mine and asked if I could do it or if I wanted her to push the button. I said I could do it. Heck, if it hurts, I rather hurt myself, right? I took a deep breath and “Click!” I did it. I laughed a little when I realized it didn’t even hurt. How silly I was. I finished attaching the pump and tape and kinda looked at her and Vince like, that’s it? Wow. I really thought that was going to hurt! So I clipped it onto my shorts and went about my day in amazement that I hardly noticed I had this machine attached to my stomach! I always call Vince a robot because of the devices he is hooked up to. It makes us both laugh, and we need all the laughter we can get to stay sane, so if that means acting like kids, then so be it. All day long I kept saying to Vince, “I am a robot like you!”
Over the next 3 days, I tested my blood sugar and counted carbs just as Vince does and used the pump to dose each meal. I tested myself about 3-4 times a day. I have to admit that I did cheat a little bit. At times, I can be a grazer. I will eat a little bit all day long. I quickly realized this would not work if I was truly a Type 1. So yes I cheated. I ate from time to time and didn’t test myself or bolus. The least favorite part of the 3 days was poking my finger. Although I got used to it more so by the third day, it hurts! No wonder Vince relies on his CGM so much. It’s not the right way to do things, but it works so I can see why he does it. I can no longer get mad. I’d do the same thing if I were him and I knew it was reliable enough to do so.
So the things I found difficult over the 3 days:
Overall the pump is not in the way however night time and changing clothes is something to get used to. Not a big deal though. Vince gave me tips to make it easier
Counting carbs is more tedious than I thought. Vince normally does most of that
Strips strips every where. No wonder these things are all over my house. I picked one up to throw it away and lost it by the time I walked to the trash can!
Packed my lunch for work and had to take a mental note of the carbs I was putting in baggies etc. if I were actually on insulin, I would have made a note and put it in my lunch bag with the exact numbers. Vince does most if not all of the carb counting and guesstimating and he has been doing it so long that he knows most foods, but it is still hard to guess with certain things. Especially a casserole. Or something where you don’t have the packaging.
If I were diabetic, the pump would be a must. I couldn’t even tell it was there. Having to carry insulin and needles everywhere and injecting all day long wouldn’t cut it. With the press of a button on the pump, everything is done. Quick and easy and never forget insulin at home. One needle every 2-3 days. So much better! Not to mention the control down to the hour you have vs multiple daily injections.
I think I will do it a few times a year to keep it fresh in my mind. Anything I can do to have more patience with him and be a better caregiver and wife, I am willing to do it.
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