Dad coming home with hospice

We had high hopes that dad would get better, but sadly that is not going to be the case it appears.  He took a turn for the worse last night and he says he is done and wants to come home.  The doctors talked with us today and said that he will continue to have these backward steps and each one will be worse than the last.  So he (and mom) have decided that it is time to come home and be on hospice care.  It has been a very emotional and taxing day on everyone, but especially mom and dad.  Dad is tired of being in the hospital and just wants to get home.  We had hoped that everything could be set in motion to go home today, but there isn’t a hospice nurse available today to be here, so he will have to wait until the morning.  I know that is not news he wanted to hear, but hopefully he can take comfort in knowing that he will be coming home.

So what the heck does this mean?  Well, it means he will die at home.  It means that it will be pretty quick.  The doctors best guess is days to a week.  Today he is awake and alert, but quite emotional.  I cannot say how long he will be awake and alert as he will be on morphine at some point to make the end process as comfortable for him as possible.

I just finished re-arranging the furniture in the living room to accommodate the hospital style bed and equipment that will be needed for him.  I am now sitting down and sharing the news with you (our friends and extended family).  We have all being going to a gamut of emotions today and I can honestly say I have no idea how I feel about this all at the moment.  Numb is perhaps the best way to describe it.

If you want to speak with him before it is too late, I would suggest doing so now.  He will not talk long, so don’t feel upset if he is short on the phone.  It may also be difficult to understand him (he will likely be crying and having trouble breathing), but he will understand you and know who you are still.

I know that this comes as a bit of a shock given how I have said he has been improving.  Part of that is being optimistic I suppose, but this latest development came as a shock to us this morning as well.  We have had time to talk with dad and understand that he is ready to go home.  That he understands what that means.  He is sorry that we have to deal with this and we have told him apologies are not necessary.  We love him and understand how difficult all of this has been for him.  We understand he is tired and physically pooped.  We understand he is ready to come home.  Of course we all wish he was coming home on his feet and we thought we were getting there, but as the doctor pointed out, his body has been through a tremendous amount and just isn’t responding enough to pull him out of this.  The doctor explained there are a possible three things wrong with him at this point, interstitial pneumonia (non-infectious), pulmonary fibrosis or advancement of his lung cancer.  There is the possibility that there is all three going on.  The problem is that in order to accurately diagnose any of these, he would have to undergo a bronchoscopy/biopsy which in his condition would end up with his requiring care that would go against his medical directive (eg intubation).  So the only option is to continue the level of care he has been getting until such time as that no longer works or go home and spend the rest of his time in comfort care.  He has chosen the later.

So that is where we are at folks.  I hate to bring this sad news, but sometimes this is how things go.  At least he will get to come home, unlike the poor young guy in the room next to him that coded today 🙁