I need some advice on care considerations

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I need some advice on care considerations

by LisaLeeM on Fri Feb 09, 2018 01:39 PM

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Hi, I’ve been providing care for nearly 2 years, but have backed out for a lot of reasons. Gregg, the patient, is currently getting keytruda and has a PET scheduled next week. He fell and cut open his head but he’s ok. He’s very weak because he refuses to eat sometimes. I went to the hospital yesterday to see why he’s still there laying in a bed which is only going to make him weaker. I was told he will only be discharged to inpatient PT facility. He has a trach and he has been getting rejected. I was told he will lay in the hospital bed until they find somewhere. I asked are we talking days or a month. No idea. I said I can’t let him lay in a hospital bed to die. Nurse says he won’t. He’ll get weaker but hey that’s ok. I asked if he can go to his treatment. She basically told me no. I said well, I can’t let him lay in this bed. She told me she’d pull in a psychiatrist who would stop me from leaving. I have financial POA which I thought covered care. I had a signed living will that mentions care but I can’t find it. I can get the hospital notary witness a new one. I’m worried because of the date they can say he’s not capable of signing. He’s fully lucid - he just can’t talk because he has no vocal chords. I support him going to inpatient PT but he, and I, do not think he should lay in a hospital bed until they find him a place. I can do PT with him at home. There is someone at the house 24x7. Has anyone encountered this? A hospital threatening to hold him against his will?

RE: I need some advice on care considerations

by imyaya on Sat Feb 24, 2018 03:47 PM

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Hi Lisa-  This is Gigi. I just wrote a very long gripe session and then saw your post from the 9th of Feb. I am sorry for not responding earlier.  As this is a couple weeks later, what is going on with Greg now.  And the "friend", the daughter.  And how are you dealing with it now. I can tell how deeply you love that man. Gigi

RE: I need some advice on care considerations

by LisaLeeM on Sun Feb 25, 2018 07:09 AM

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Hey Gigi! I didn’t want to bore you guys on the other thread with my drama. It’s been ridiculous. Gregg was in the hospital 2/2-2/12. He went to inpatient PT 2/12 until this past Thursday. His “friend” disappeared. The 2 younger daughters finally asked me about him 2 weeks after he was gone. I blasted them both. I told them how I waited 6 days but could not bear the thought of him being alone and I was with him 13 of 14 days. The older daughter went the one night I didn’t because I refused to drive back and forth to get him things from his house. I was with him but downright awful. He doesn’t eat or drink. Gets weak and falls, and somehow I’m supposed to revolve my life around him every day forever. The transfer to the home - no meds, no food. It was a disaster I am still not recovered from. It was a nursing home so it was miserable. I honestly thought he’d just move in there. I actually made peace with it and I felt free, the pressure lifted. Well. He wanted out. He worked hard. He made his usual promises. We get to the house and the friend wasn’t there. Money missing. He had people sleep there several nights...but now the pressure was right back on top of me and started losing it. I wanted that loser to never show his face but now I’m going to have him back in my care. He starts saying he was afraid of the bathroom. I lost it. I threatened to send him to home. He was in bed 6pm. Hooked up to his night feed. 1200 calories. That’s it - he’s not eating more during the day. I said - go to a 55 and over apartment or the first phone call I’m sending you to the home. I found out he kept his daughter home from school yesterday so he wasn’t alone. Through all this he agreed to go to an apartment. His daughters have no idea. He does want his daughter with him but I’m not sure they allow it. I said the most awful things to him. I can’t even believe it. So that’s where we are now. Thank you for asking. How are you? Maybe I need to just go read your rant.

RE: I need some advice on care considerations

by imyaya on Sun Feb 25, 2018 02:08 PM

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Hi Lisa- I wish we lived closer. We could probably spend hours just talking. I understand how you feel having to deal with the everyday things when the daughters just "let" you do it. And pop in occasionally for a visit. I also understand how you sometimes feel like walking away, but the love you have for this man, and your concience don't allow that. As for that "friend".  I think all of us on this board were suspicious of him. It takes a very low person to use others as he did. I keep thinking about my song "one day at a time".  I think sometimes thats how I cope.  If  can make it through THIS DAY only, somehow the days add up.  I admit that every time we have a "crisis" I plot in my mind leaving, going back to Ca.,etc. But I know I can't. I am glad you got him out of the "nursing home".  Those places are horrible.  If they would pay decent wages they would get qualified personnel. But they don't, in spite of the amount they recieve per patient so all they get is uneducated, low wage earning people who have too big of a work load to do it right.  Some of the workers don't even speak good english. I know you are as tired as me of getting the compliments and pats on the back instead of real help. Just know you have a "sister" in all your chaos and grief. Blessings. Gigi

RE: I need some advice on care considerations

by LisaLeeM on Mon May 28, 2018 03:24 PM

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Hi Gigi, I wrote a long post on the other thread. I’m sure the trouble maker will have something to say about it. Lol. I’m going home to NJ in June. Maybe a few weeks. I’ll stop in Florence South Carolina as my half way point. If you’re anywhere near there let me know and we can figure out a way to connect privately and I’ll take you to dinner! :-) I hope you’re doing ok. I think of you all the time.
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