Confused (long)

I am an occupational therapist although I am on disability now. I worked in nursing homes for 9 years so I have seen a lot about death and what happens. There were patients I'd get close to and then they'd die and I'd grieve a little. I've also seen a lot about how care in nursing homes is and I pray he's going to a good one.

I'm having a hard time coming up with good memories. I know they're there but right now I'm just not finding them. I do need to start writing but somehow it scares me.

If that is the case, do not force yourself. Maybe there aren't good memories or the are queued up somewhere in the very back, and bad memories are waiting for a permission to be written down first.

I finally realized I do have good memories but the bad ones are the most accessible because they are associated with fear and I think the fear overcomes the good stuff. I'm sure in the months to come I'll deal with both.

I talked to the case manager today. My father is showing fairly significant confusion if you look at it one way and distinct preferences another. Basically when he had break from restraints he pulled out his feeding tube (again; this thing is surgically implanted and held in place with an internal balloon and must hurt badly to pull out. This one had just been placed a week ago), his trach (!!!!) and then the tube they put in his nose to his stomach to feed him until they could replace the feeding tube. He is no longer getting restraint breaks.

They think it is confusion. I'm sure he is confused but I think it's also partly him expressing himself. He doesn't want the tubes. He doesn't want to live on machines. And when he finds himself in a nursing home late this week or early next he's not going to want to live there either. Some people do better with that than others and he will not handle it well. He was so paranoid living in his house and now he's got no privacy, a roommate, etc. plus the tubes and diapers. I told the case manager he'll give up and die there and I truly believe that. Hopefully without pulling tubes every few days, especially the trach.

I'm so sad for him.

I'm so sorry, BeyondtheRainbow It must be really hard for both of you. You're both in my thougths and prayers. Please don't give up. I hope things will get better soon. Just remember that you're doing everything you can to stay near him. Be proud of yourself for that. You're a wonderful person. Stay safe and take care of yourself. Your health is important as well. Don't neglect yourself. Remember that we're here for you to support you. You know we won't judge you here. Wish you good luck! Let us know how it goes. Sending many hugs to you

I'm sorry your dad is/will have trouble adjusting hopefully he will understand why he needs them. I don't blame him for not wanting it but the whole situation just sucks. Hopefully he won't need restraints in the nursing home.

More big hugs, BeyondtheRainbow. What a very trying situation. Your most recent post sure made a good case for advance directives (I have one, not ever wanting to be in that situation). It is so very hard sometimes these days with so many machines. I'm sorry he keeps ripping the tubes out --ouch!

Please take good care of yourself...

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Mr. Robot

Makes me sick to the heart, Oh I feel so tired. And the way the rain comes down hard, that's how I feel inside.

--The Cure

I did some research on the nursing home and I feel better about it. I still think he'll absolutely loathe it but it seems to be a nice place with tons of nursing care (which you'd expect with vents but the vent place I worked was awful so I don't trust). They use portable vents so patients can be up and active. The people they showed did not seem to have confusion but I'm sure in the number of beds they have that at least some do. It won't be perfect but it hopefully it won't be a horror show.

Hopefully he'll like it once he gets use to it.

I'll be thrilled if he tolerates it to the point he stops pulling his tubes out. That would be great if every time I call to check on him he hasn't had to have tubes replaced. The hospital where he is now seems very good and attentive and he's still pulled tubes every chance he's had. My hope for him is that he relaxes about the tubes and doesn't have to e restrained all the time and that he finds one thing pleasurable about the nursing home. I wish I knew what that might be. We'll see I guess.

I called to check on him today and actually got positive news. He is off the vent and breathing through the trach. now without support (I think just oxygen?). He's been talking more and doing better in therapies.

I'm glad but confused even more. He keeps doing the opposite of what I prepare for and what they prepare me for. He seems to have decided to fight so I guess that's what will happen. If that's what he wants good for him. I can't believe 3 weeks ago they had no hope at all and now he's suddenly making progress.

This has been quite the 4 weeks.

Hope things continue to improve.

I swear I'm not making this up. I feel like this sounds like I was overdramatic at first and back-talking since trying to make up for it. It really has happened this way. It's how how lived his whole life: contrary. Who knows what he'll do next.

Oh, BeyondtheRainbow, what a rollercoaster for you!! Your confusion is VERY understandable. What a ride...

Are you taking good care of yourself?

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Mr. Robot

Makes me sick to the heart, Oh I feel so tired. And the way the rain comes down hard, that's how I feel inside.

--The Cure

Glad to hear he’s making progress.

I believe you though. My grandpa kinda acted that way, although he wasn’t ever on a ventilator. He just had the same behavior/thought-process. Such people make me confused as well.