Introduction

[stewartb40]

Hello, my name is Becky, my husband was diagnosed with lung cancer about a year ago. At that time stage 3, now stage 4, having metted to the bone (sacrum, T1 vertebra and left ribs) and it appears, to his brain as well. His choice was to go into hospice care, back when he was still in his right mind, and he is now home with me. 

I'm not sure I can do this. He's suffering from agitation, occasional hallucinations, and paranoid delusions. The other night he was convinced I was trying to kidnap him, and climbed out the window. The Ativan they gave me at the hospital only seems to make it worse, and the Haldol helps but only if I can get it into him. And he's stopped wanting to take it.

I'm absolutely wondering if bringing him home was the right idea. 

[Curt]

Hi Becky.  I’m really sorry to hear about your husband.  I went through much the same with my dad and it is very upsetting.  It was the hardest time of my life.  The hallucinations could be caused by his medications or they could be due to disease progression.  

My dad hallucinated quite a bit and would get pretty agitated with my step mother.  She was the one feeding him, giving him his medication and doing a lot of the primary care. He was convinced she was trying to poison him and tried to throw her out a window more than once. I had to intervene to stop him.  My brother and I went to visit them, saw the situation and decided we had to stay.  My dad was very different with us.  He always recognized us and we would be able to calm him down, though he still hallucinated with us.  He would ask us where our mom was, they had been divorced for 30 years.  He would ask about his sisters who had passed.  It was all very upsetting.  We struggled a lot with whether keeping him home was the right choice.  It was really scary.  I don’t think it would have been possible without the three of us there.  We never really got much of an answer as to why he hallucinated, disease progression was the best we were told.  The hospice nurse had us increase his medication so that he was basically always sedated.  I believe it was morphine.  He continued to insist on getting up to use the bathroom.  Other than that he slept a lot after the meds were increased.  He started to eat less and less.  I had conversations with my dad early on about how he wanted to be treated when he couldn’t decide for himself anymore.  I asked him if he preferred to be lucid or not in any pain.  He said he preferred to not be in pain.  It was hard because we wanted him to be present with us both mentally and physically as long as possible.  We had to honor his wishes and make sure he wasn’t in any discomfort, which meant he was not with us mentally much at all.  In the end it was the right choice for all of us, one of many right choices my dad made for us over the years.  

Let your doctors know what’s going on   You can request a hospice service come to your house.  They came twice a week for an hour for my dad and we’re able to provide some clarity with what was happening.

 

[Susan Cornett]

Becky,

I'm sorry that your husband is struggling so much. My grandmother was combative. We had daily hospice visits and when she became so combative, they increased her meds. Hopefully you can get some assistance at home. Thinking of you.