This is our experience as of late.
I had been seeing the declines coming in Hubby. I didn't want to acknowledge them at times but I could still see them.
His speech was more garbled, his cognition was worsening, less mobility, you know, that stubborn pull himself along mobility, hallucinations had increased as well as delusions. They weren't pretty. He was losing weight, eating less, staying up for days on end or sleeping. Falls were still happening. 18 of them from Nov - today. But other than restrain Hubby I couldn't keep him from trying to get around.
Thanksgiving quietly came and went, Our 32nd anniversary did the same as well as Christmas. This year I bought a very small table top tree. I bought 2 actually, one for the living room and one for the bedroom where Hubby stays.
The hallucinations were causing more anxiety for Hubby. To him they were hostile and threatening to self, property and others. So bad that we made a pre Christmas visit to the V.A. ER to try and find something to relieve his suffering from them. And I TRULY believe these hallucinations are a form of suffering.
Now I know this is pretty intense discussion so on a lighter note, while at the hosp to deal with hallucinations, guess who walks in? Santa! Now try explaining that the people Hubby sees are not real but santa is!
Back to the intense, we decided to try a small dose of a new med, seroquel for the hallucinations. I watched him like a hawk for side effects but nothing really stuck out at me. Declines continued.
One thing that did happen as a positive, he had always had a terribly dripping nose. It was awful and we have tried every OTC and prescription we could get to combat it with no luck. Hospice had a patch they suggested. It is used to help with excess secretions so I read all the info and again watched him like a hawk for any of the gazillion side effect warnings listed on every bottle or box of meds. The only thing I did notice was the runny nose STOPPED! It was like a miracle patch! Everyone lift your hands to the air and say, awww!
So the running nose stopped but the declines didn't. What it feels like is we were sliding down the side of a mountain with some sort of footing until we lost it and started tumbling and grasping every shrub, limb and rock we could find along the way to slow us down with no luck.
Right now this is how the blog is going to go, fast forward.
Jan 19, Hubby had a catatonic episode. He lay in his bed with a blank stare or eyes closed, non verbal and non responsive to anyone. Not moving and he stared at you like he was looking through you. At first I thought he had a stroke but slowly he made some responses that made me doubt that. Then a couple hours later just sat up in bed like nothing happened. The next 3 days he was sick to his stomach and throwing up. Then it all hit the fan. The following is a copy paste of a group message I sent.
I had to get an amb to take him to the VA and he is admitted to an observation ward.
I even had video of part of his episode to show the Dr.
Once he got to the hosp he was Mr calm cool and collected. But they kept him and had a sitter to keep an eye on him. He did great, so well that the sitter was told she wasn't necessary any longer and left. Shortly thereafter, according to the head nurse, he had melt down.
I hate that he had that and at the same time glad so that they could see for themselves.
Today wasn't any better and not only was I the bad person, so was everyone else.
I felt like my presence was making things worse so I cut my visit with him short.
They will keep him for a couple of days to look for underlying issues like infection. But personally, I feel this may be progression of the disease.
I know they can't "fix" the problem, but I would like them to find some peace for my husband. I feel like he is suffering with his mind.
Worse, I feel like, if we can't find him some relief, I can't bring him home.
I feel blessed that I am at peace that I will have to make this decision, I have prayed for clear answers. I just find it hard to think we are at that point. 7 yrs went by so fast.
Today, Friday, Jan 31, after an entire night of chatter and anxiety he FINALLY went to sleep and slept peacefully. He isn't grabbing imaginary things from the air or blankets. But he also isn't responsive to anyone.