A bit about caregiving

There's a lot of (unnecessary) guilt around my house. The thing about this kind of illness is that it robs so much from everyone. Someone who was once very independent now needs help with the simplest of tasks like opening a can or toweling off and dressing after a shower. It's a lot of adjustment losing abilities. But also an adjustment for me picking up more care for him. Before it was a lot of joint care for the kids. Now it's that plus what he use to do for them and all the new stuff that he can't do anymore. Right now at least he is doing some of the other stuff like reading with LG and still doing some of the easier cooking though he is teaching me how to cook some stuff. But that's another thing. BT's ability to cook is diminishing and so I have to take on more of that. It's just more and more. I have a good support system in that my parents live by and are willing to help out. Among the many things that they do, my dad drives BT to his infusion treatments that take place once a month and does yard work. My mom gets the kids after school and takes them to their various sports activities. So that is extremely helpful and eases my responsibilities. They have been a tremendous help and there is literally no way to repay them.

I'd like to say that I've been the picture of grace about all of this. I have not. I have tried my best, my very best. But it's been a hard road of acceptance that continues on. Every time there is a down slide it gets rough. I wish I could be like the other caregivers I read on the internet, the ones who say that they accept it, that their spouses are their reason for being, that they love being a caregiver even if it is stressful. I don't know if it's words for the internet because no one likes admitting the ungracious side of themselves or if it's true. It is not for me. Maybe if we were older or our kids were grown or if we had managed to do more of the things we wanted to do together but this is not what I wanted, not how I saw things going. And that's obviously true for both of us. The difference is that I saw the future I had envisioned go away in an instance. BT mourns the past and all the things that he never got to do. I mourn the future and how I can't plan for it anymore and how he won't be in it or if he is how different he will be. In 20 years will I be alone or still caring for BT? The truth is the future is hard to predict but before I felt like I could say "Oh when we retire we can do XYZ." I don't feel like that it is true anymore. I try to find something for myself and ideas for my own future. I tend to focus now on the immediate future. What game I want to play, what race I want to do, what vacation we can take next year. I like to have a plan and now that I can't have anything long term I like to at least focus on the short term.