Unconditional Love

The Next Steps in this so called journey of our life are going to be tougher than I thought. The mindset of my husband is challenging me everyday, as he tries to adapt to his new life it’s always one step forward and two steps back. This constant back and forth struggle really does a number in his mental health. It’s something even the medications won’t be able to fix.

He’s by far the strongest man I know and yet he feels so weak from this whole ordeal. He doesn’t really seem to grasp that he can overcome anything. His mental state of mind is not like it used to be. He’s become emotionally, physically and mentally dependent on me. He chooses not to make decisions on his own because he feels he can’t. In some way I feel I have enabled him by taking over and over seeing every step in this journey. Is that a bad thing when I know he isn’t truly capable.

He’s getting better at doing things for himself but when a situation arises and he can’t complete the task he used to be able to do, he gets very angry and tends to take it out on the people closest to him. I hate that he feels helpless, I hate that he has to struggle, I hate that I have to try and do everything he can’t, I hate that he has to depend on me, I could go on with the list of hate but it’s not going to change our situation.

Adapting has become our new normal, Joe has now developed an uncontrollable jerk and it is happening quite often. Not sure if it’s from the medication or just something he’s developed because of the LVAD. He’s trying his best to conceal it from anyone noticing, the more he tries to conceal it the worse it gets. We’ve tried several home remedies since the doctors aren’t sure what it is and only one has worked. But the one thing that works could be the only thing that really stops him from getting a heart if he decides to go that route. Poor guy can’t win for losing but he is willing to risk more than anyone will ever understand.

Ever since we put the transplant on hold the LVAD team seems less involved with us altogether. We really haven’t heard from them. No updates, no weekly check ins, no monthly reminder calls for blood work, funny how that all works when you don’t want to do what they suggest. Joe hadn’t went in for blood draws in two months and we needed an appointment with his psychiatrist for medication refill and put a request through the portal and amazingly the team seen the request and sent a text saying it’s been two months since you had your blood drawn could you go in and get that done. Now you’re concerned was all we could think. Just in our opinion we feel they are less concerned because he doesn’t want the heart right now, maybe we are overthinking this but it’s how we feel.

We just need this time to adjust to our NEXT STEPS and we are living the best we can. It’s been two years since the LVAD and life is different but he is still here and we are pushing through every day and loving each other more than ever. Good days or bad days we have each other step by step till the end.