A step in the right direction.

My Dad had a nephrology appointment (kidney doctor) the day before yesterday.  Appointments like this always have me keyed up because he continuously says "There's nothing wrong with my kidneys."  I beg to differ, Dada, because the three kidney doctors have said that his kidney function is diminished and he is stage 3 of chronic kidney disease.  On top of this, he thinks that because they put three stents in his heart that he no longer is suffering from congestive heart failure.  So, whenever there is something medical going on, he always argues with me about how his kidney's are fine, he's fine, he doesn't have pain, blah blah blah.   I'm over here looking at him, he's grinding his teeth like he's in pain just sitting on the couch watching NCIS and he has other tells such as he rubs his head, puts his cap on and sits there staring at the walls.  Some days, he doesn't even register that I'm in the room until I am right next to him.  

Kacy and I think there is some sort of disconnect between his brain and his body, where he's just not realizing he's in pain.  On top of that, he was complaining of a pain in his groin the other day on the same side that he had the blood clot in his leg before and my brain instantly went to catastrophizing that the blood clot that he spent nearly 2 weeks in the hospital on heparin trying to clear has returned.   Thankfully, his doctor is coming today to check on him.   After a long discussion with him, while I had him trapped in the car on the way to his nephrology appointment, I also was talking with him about the giant elephant in the room- what happens if he declines again.  I used the word "if" because my Dad does not like to talk about anything related to this.  If you ask him, he's perfectly fine and he's probably thinking he'll live forever.  He doesn't want to face his mortality.  I can't blame him, it's not something that I want to face either.  A world without my Mom was hard enough to face but a world without my Dad?  My brain doesn't even want to register it, even though I'm pretty sure I started the grieving process back in August when he first went into the hospital.  

The number one thing that he's wanted is to NOT be in the hospital.  He doesn't want to go back to the hospital, he doesn't want to be in the hospital, I'm pretty sure he doesn't even want to look at the hospital.  Every time we are anywhere in the vicinity of a hospital, he probably has a little panic attack thinking that he's going to end up there.   I can't blame him.  He has even told me how his own father was admitted to the hospital 5 times and on the 5th time he didn't come home.  My Dad is still wrecked about that and I know it sits at the forefront of his mind because he has mentioned it several times about how he just watched my grandpa gasping for breath.  I honestly don't want that for my Dad either.  

That's why I had the talk about hospice with him again.  He's not anti-hospice, but he doesn't like the idea of hospice.  Rather, I should say he doesn't like what he thinks hospice is.  I keep explaining that if he does not want to go back to the hospital (and his legs are already starting to swell again, a little more than a month after the stents were placed) that he we need to have something in place where he can have someone come in and help him.  With hospice, he will have a dedicated team making sure that he can stay at home and be comfortable in his own home rather than be in the hospital, which he absolutely hates.  

He doesn't want to go back to the hospital, I don't want him to go back to the hospital, but it's way above my paygrade to actually take care of him when he's swollen and needs IVs, etc.  Hospice can treat him at home.  So, I want that for him.  I'm sure he wants that for him.  He just doesn't understand what all it means.  It's not end of life care, it's making sure that he can live his life to the fullest without having to be stuck in a hospital at the end of his life.   I honestly don't know anyone who would want to be in a hospital at the end of their life.  

So, we're having that discussion again.  And this time, I've made the executive decision that I'm having this plan put in place.  It's not just what he needs, it's what I need to.  Hopefully, this will allow my own jaw to unclench and be able to enjoy the time I have left with my Dad, because even if he does make the year mark (which I know the statistics - only 34% of people diagnosed with his particular issues make it a year after diagnosis and that year is coming up...), there's no guarantee for another year.    I have also given up a year of my life and then some taking care of his stuff.  Between the casita, him being sick, my work has gone into the toilet and I'm rebuilding yet again.  I'm on my way back to good stuff, but it's going to take some time.  I'm trying to be kind to myself, but it's hard.  I'm thankful that I'm in therapy and I'm thankful for Kacy and the kids.  They're an enormous help.  I am also so grateful for my bio-mom Debbie because she has been a saint and so helpful.  I really love her and I'm so grateful to have the chance to have her in my life.  

We're going in the right direction.