Today was hard. There was a big meeting with everybody (including Mike and his eldest son who showed up unexpectedly this morning) from Alaska. When all the doctors said their piece to Mike explaining to him in various ways that they could fix his heart, but it wouldn’t fix anything else going on and if they did the procedures it could make what is going on worse. Mike still did not seem to understand (or he is just clinging to that Denial) the situation.
That left myself, Dave (Mikes son) and a group from Pallative Care to explain to my husband this was his end of life, and still, he seemed to only cling to the fact that the surgeons said they “could” fix him. That’s all he heard, that’s all he wanted to hear. It was exhausting and a long meeting of which I recorded it for the sake of the kids that didn’t come to see their dad.
In the end, Mike will go to Home Hospice. They told me that they are “the new 911” Should he fall in the house, I am to call them straightaway. They will come out immediately and they are available for both of us 24/7. They will take over in every aspect of his care, visiting 3 days a week. They will look at his meds and toss away the ones that he is taking to prevent something he “might” get in the future- take him off the toxic chit- he has been on opiods for ten years! So his kidneys failing at this stage is no surprise, that is what hydrocodone does, it poisons the kidneys. They will be here for me, for spiritual support, emotional support, whatever I need, and if the care becomes too burdensome, they will take him for 5 days at no charge and put him into a facility to give me a much-needed break.I am ashamed to say that during the meeting, I couldn’t keep it together and when I started to cry, a nurse came over and gave me a box of kleenix. I told her I was sorry that I had broke down and she hugged me and said “Are you kidding me? If I was in your position, I would be on the floor in a puddle!” That made me laugh.
I know that Mike knows that he is dying and if he wants to play that life is great and a butterfly has landed on his nose and all is right with the world, then I can play along. I know it is going to be hard. He wants to die here and that is not something to look forward to, but it is what it is. His insurance does not cover long-term care of this measure but Hospice Home will be free and they will be available 24/7. If he falls in the house, I am to call them instead of the paramedics. He will be on a morphine pump, he will have a catheter to make it easier on him and I guess we will just continue on and when God knocks on his heart one final time, my hope is his last days were easier for him than his past days have been.
Love you guys, thanks for being here.
This was very hard to read. I can only pretend to understand how hard it was to write. I’m sorry.
Mary Ann, I am so sorry to hear of this. I was in a similar position last December with my father. I found him in bad state, called ambulance.. and long story short, they found a lot wrong.. too much to fix at his age (80) and we had to make the decision to let him go. He passed on Dec 26.
I still wrestle with that decision today, what if… i dont know if those will stop. Please do not blame yourself, for being “weak” and crying, my god, its the most normal thing in the world to do in such a horrible situation. I know the family dynamics is.. complicated from your previous post but do try to gather support from Mike’s kids.
They will help you through this. We will try to help as well, all of us. It’s gonna suck, its gonna be heavy and hard and many many tears will be shed…. and we will be there to help, so will they. Please please do reach out to get support in this awful time.
We love you, and all that you do.
Just know I pray often for you both, support for you, peace for Mike.
As his life fades…trust and pray that His breath for him is everlasting. Job 33:4 “ The Spirit of God has made me; the breath of the Almighty gives me life.”
After it was decided that we would go into home hospice, a cardiologist came in and sat down in the room. He said “Michael Miller, how would you like it if we fixed your heart?” Mike perked up and smiled and said “Yes!” I looked over at Dave and saw bewilderment in his eyes. The surgeon continued “We can’t crack open your chest, we can’t do an angioplasty, but we can do an ablation on your heart!” When I heard that word ablation, my blood started boiling. The surgeon did his selling points- sounded like a used car salesman. and when he was finished with his spiel- I asked him one question…”Why?”
He looked at me and said “Why? To fix his heart!” And I said “And to what end? He is here because of an ablation to his leg. Everytime, you guys cut him, drill him, poke him he gets an infection. He is a hot bed of bacteria underneath his skin and now you want to not only poke him but you want to kill parts of his heart that are already 70% blocked? Oh and by the way doctor, we have decided to go to Home Hospice.”
He was really quiet. Then he said “Oh, I did not know that!” then he completely went transparent and said “Well Mr. Miller, we can fix your heart but that won’t fix all of you. It might even make what is wrong with you worse.”
I’m sorry, but I looked at him like you son-of-a-bitch. You come in here selling my husband false hope without telling him the whole picture until you learn that the decision to stop all experiments are at an end.
Then the doctor stood up and looked at me and said “Ms. Miller that was a really good decision that was reached in Mr. Miller’s care,” and then he blew out of the room.
One of the reasons that the kidneys have caved in is because of the dye they used for the left heart catherization. It is hard on the kidneys and his levels were low, but just this procedure alone caused them to caveat (according to two kidney specialists). They were the ones to tell me to question any cardiologist coming in to offer another surgical procedure. They said that unlike in their profession, cardiologists don’t look at the patient, they are just focused on the heart. They said, Ms. Miller if you truly love your husband, ask every time, “Why?” Why do the procedure, because if anything is done on your husband at this stage, he will die.” So that’s why I stood tough and told my heart “ENOUGH already!” and challenged this man.
I am headed back to the hospital now. I have a feeling it is going to be another long day. The only difference is this time, I will have Kota right by my side.
You’re right; that cardiologist is a son-of-a-bitch. Good for you. You are being remarkably strong. Remember that tears carry toxic chemicals out of your body; don’t apologize for them. Also remember that people all over the continent love you and are sending prayers and support and love.
I’m sorry you are dealing with this. I’ll keep calling till I get you at home, just to say I love you.
Some surgeons walk around, believing they are gods! What an a**hole to do that to Mike and you. Good on you that you didn’t punch him in the throat, because I would have!
Nevertheless, I am praying for Mike.
All that matters now is that Mike will be home…where he wants to be. I believe you’ll have lots of support and knowledge with your hospice team. You’ve got this Mary Ann!
I am so sad to say that I believe my husband has finally realized the reality of his situation and in that process, his mind has completely snapped. At first, I thought it was denial, but after today, I think I am right that he was not strong enough to handle the news and once it penetrated bad things happened within his mind. He will be home tomorrow. I had to sign all the hospice papers today which was dreadful moreso than the advanced directives and the pulse sheet. It is going to be a long, hard row ahead of us. I pray I am up for the challenges that lie ahead.
Mary Ann. I’m praying for you, Mike and your family. I can’t imagine the pain. ??
Prayers being sent Mary Anne for you and Mike . So much on your plate. I pray for the good Lord to give you strength for the days ahead.