Fear I am being ghosted [UPDATED - he's now in a nursing home]

[BaileyB]

21 minutes ago, basil67 said:

My dad's delirium was caused by myeloma (blood cancer) which was reversed with chemo.  

My mom’s delirium was cause by the high dose steroids she took for her myeloma and then, they said it was a result of the “burden of the disease.” 

Yes, as was said above, it’s very common for women especially to become loopy when they have a UTI. 

Lots of things can cause delirium - and that is very separate diagnosis than dementia. 

Hopefully, he has been transferred to a rehab facility because recovery from Gillian-Barre is possible but it takes time. 

Of course, if he is in liver failure because of the cirrhosis that is another story entirely… he would require medial intervention or supportive care. But, we don’t know that this is the issue - he has multiple issues, i would want to know more about his medical status to know whether there is some hope for improvement/recovery. 

Edited July 30, 2024 by BaileyB

[mortensorchid]

I see him often.  He is in a LTC rehab facility at the moment.  He has good and bad days, like most people who have suffered from TBI (Traumatic Brain Injury - as it was determined since he went for a long time without oxygen).  He knows my name, he says silly things at times it's like talking to a toddler.  He eats food now instead of it being fed in a tube through his nose.  I get there around dinnertime when the trays are being served, I cut his meat up and feed him as he's not able to work a knife and fork.  

[Gaeta]

What is the pronostic on his cirrhosis ?

[FMW]

1 hour ago, mortensorchid said:

as it was determined since he went for a long time without oxygen

When/how did that happen?

It's certainly your decision on what you share, but it's hard to follow the situation when information seems to be missing.  

What you HAVE described sounds very sad, for both of you.  It seems things will not improve.  

[mortensorchid]

As far as I know there is no evidence of stroke.  He had been in his apartment lying on the floor for how long, whatever happened happened in there and his body was shutting down bit by bit.  By the time I had called 911 on him, he had been down for a few days.  

I don't know anything about his cirrhosis condition, how it's affecting him, or how it's being treated by the medical staff.  I am the only one who sees him.  And yes it is sad that at 43 he will end up an invalid, but there's nothing I can do about it other than be there.  

 

[mortensorchid]

He went to a nursing home today and that is where he will remain.  I saw him today after he'd been moved.  He thought I was Kamala Harris and asked why I wasn't with Joe Biden.  I said to him I wish he would come back and be who he was again ... He isn't coming back.  

[FMW]

I'm very sorry you've had to go through this.

[semble]

The confusion with you being Kamala Harris could be nothing more than age related vision loss such as cataract however his lack of knowledge regarding the current state of the democratic political party is extremely troubling. 

[BaileyB]

I’m very sorry. 

[Gaeta]

He probably was more confused than his usual because he was moved. That is tiresome & confusion for people with brain damage. 

I am very sorry it unfolded this way. He has irreversible brain damage and a cirrhosis that usually limits life maybe to a few more years. 

Now that he's settled in his new permanent home you need to take care of yourself. 

[mortensorchid]

If you have been following a previous thread I have created, my boyfriend's health went downhill.  Long story short, he started going downhill on March / April, I ended up calling 911 on him.  He spent 25+ days in the ICU, determined there was a traumatic brain injury due to his lack of oxygen, he went to a nursing home.  He is 75% himself, it's like talking to a toddler.  He will be an invalid at age 43.  I see him often, all I can do is tell him I love him.

I took care of some business matters for him.  His mom is in a nursing home with dementia, I called and informed them that he is also in case they are reaching out to him and wondering why he isn't answering, they thanked me.  I called his boss (he was a college professor at a local college) and informed him that he was in the ICU and he was in no condition to be returning to work for the fall semester, he thanked me for that and informed his department.  I went to his apartment manager's office (they remembered me when I called 911 on him), told them that I was unsure of his prognosis but chances are he would not be returning there.  I went to his apartment, took a few things out (sentimental things between me and him, just some silly things like blankets, a stuffed octopus), handed the keys over to the manager.  I gave all information over to them, giving them his brother's phone number as he was/is the only relative he has.  He does have a father, but the father is right on the edge of going into a nursing home for dementia himself and he and the brother live together. 

The brother is angry with me that I did all of this.  Why?  Because he didn't want to be left holding the bag financially in case there was any damage to the apartment.  He would not go back to the place.  And by now it's been cleaned out and thrown away by the apartment management.  I said he has things like family photos and keepsakes in there and you're just going to let it be thrown out?!  Yes, because he doesn't want to be left financially responsible for him and all of those things have to be thrown out because of me.  And he didn't like that I have given his contact information over to his mom's nursing home either for the same reason.  Wow, just wow.  

Apathetic?  Immature?  Absolutely.  

[NuevoYorko]

I'm sorry. 

[ShyViolet]

It sounds like the brother has some mental illness.  He doesn't care if old family photos and keepsakes are thrown out?  That's very strange.  I think you did what any reasonable person would do.  Who cares if he is mad at you?  I would just block him.  Sorry you have had to go through all of this.

[mortensorchid]

I had met the father 4x and the brother 3x before his health went downhill.  The brother certainly does have mental health issues [ ] He and I have a business relationship only, not a friendship.  I did what any reasonable person would do in my situation.  Eventually we'll stop communicating, which is fine.  He's not a good person because he doesn't want to be an adult.

I went to see him (the boyfriend) on Saturday.  I found him on the floor facedown, I thought he fell down.  The nurse said they just leave him on the floor on gym mats because he just gets out of bed and falls down all the time.  He's covered in bedsores and he wears a diaper.  He was asleep, I woke him up.  He laid his head in my lap and thought we were in WWII and in Germany.  I said no we aren't.  I told him I love him because that's all I can do for him. 

 

Edited September 17, 2024 by a LoveShack.org Moderator

[basil67]

3 hours ago, mortensorchid said:

He's covered in bedsores

"bedsores are generally a sign of neglect and in almost all cases, bedsore medical complications are completely preventable, if appropriate care is being provided by the nursing home staff"    You've gotta get him out of there

https://www.nursinghomeabuseguide.org/bedsores/

[ShyViolet]

13 hours ago, basil67 said:

  You've gotta get him out of there

https://www.nursinghomeabuseguide.org/bedsores/

I agree this sounds like a bad facility that he is in.  However, she is not his wife, and she has no legal ties to this situation.  I'm not sure it's her place to make these decisions and she might not even have any legal authority to make these decisions.  This is an unfair burden to place on her when she doesn't have any legal ties or legal responsibility to the situation.  I'm not sure what the solution is here.

[basil67]

4 hours ago, ShyViolet said:

I agree this sounds like a bad facility that he is in.  However, she is not his wife, and she has no legal ties to this situation.  I'm not sure it's her place to make these decisions and she might not even have any legal authority to make these decisions.  This is an unfair burden to place on her when she doesn't have any legal ties or legal responsibility to the situation.  I'm not sure what the solution is here.

This is true.  I wonder who approved him moving into this facility in the first place

[mortensorchid]

On 9/17/2024 at 5:25 PM, basil67 said:

This is true.  I wonder who approved him moving into this facility in the first place

I looked it up and it's an all Medicaid recipient facility.  He had no health insurance, his brother got him on Medicaid (that was the only finger he lifted towards him).  I maintain the open channel with the brother because he will relay the decisions made by the legal guardian to me.  Otherwise the brother and I have a business relationship only.  I suspect he will eventually stop calling me, which is fine. 

I saw him today.  He was in a wheelchair in the lounge of the place and he had eaten off his lunch tray.  He was happy to see me.  We talked for a bit, he is weak.  He thought his parents came to see him (which neither did), he is bloated out to there with his IBS belly again.  He will probably have to be drained again.  When I was going to leave he cried a bit, I wiped his tears away.  He asked if I would ever come back, I said I would come back of course, not sure when but soon.  He said he was so lucky to have me, I said "Yes you are".  

[Gaeta]

17 hours ago, mortensorchid said:

he will relay the decisions made by the legal guardian to me

who's the legal guardian?

[bpb2017]

On 9/14/2024 at 4:08 PM, mortensorchid said:

If you have been following a previous thread I have created, my boyfriend's health went downhill.  Long story short, he started going downhill on March / April, I ended up calling 911 on him.  He spent 25+ days in the ICU, determined there was a traumatic brain injury due to his lack of oxygen, he went to a nursing home.  He is 75% himself, it's like talking to a toddler.  He will be an invalid at age 43.  I see him often, all I can do is tell him I love him.

 

Sorry to hear all this but I think you're here to vent rather than look for any advice.

Good luck and I wish you well.

[mortensorchid]

5 hours ago, Gaeta said:

who's the legal guardian?

SOmeone in a state office somewhere.  

And yes it is venting.  

[spiritedaway2003]

On 9/18/2024 at 7:30 PM, mortensorchid said:

I looked it up and it's an all Medicaid recipient facility.  He had no health insurance, his brother got him on Medicaid (that was the only finger he lifted towards him).  I maintain the open channel with the brother because he will relay the decisions made by the legal guardian to me.  Otherwise the brother and I have a business relationship only.  I suspect he will eventually stop calling me, which is fine. 

I saw him today.  He was in a wheelchair in the lounge of the place and he had eaten off his lunch tray.  He was happy to see me.  We talked for a bit, he is weak.  He thought his parents came to see him (which neither did), he is bloated out to there with his IBS belly again.  He will probably have to be drained again.  When I was going to leave he cried a bit, I wiped his tears away.  He asked if I would ever come back, I said I would come back of course, not sure when but soon.  He said he was so lucky to have me, I said "Yes you are".  

Sadly, there are some very mismanaged facilities out there (whether it's nursing homes or mental health facilities).  I've seen some first hand and it breaks my heart. Not all facilities are created equal.  It's so important that the person in the facility, who is at the most vulnerable state, gets the care they need and that helps when there are ardent advocates for them (usually loved one or family members).  Yes, often times the facilities may have a high caseload, but as someone else mentioned, getting bruises and falling are signs of neglect.  See if you can work with his 'legal guardian' (sounds like his brother is the closest family of kin)  who can help him maybe transfer to any Medicaid accepted facility with a higher quality of care.  I'm sorry you're in this situation.  There's only so much you can do if his family isn't involved.   it's an uphill battle. 

[mortensorchid]

My bf has now spent a month in the nursing home.  I will never know for sure what did or didn't happen during those 11 days that we didn't speak and when I called 911 on him, but I THINK what happened was he got fall down, stupid drunk (his bedroom was trashed when I found it) and coupled with his declining health he went under.  Was he trying to end it?  Was he aware that he was in such a bad state?  I don't know.  He has fallen under TBI (traumatic brain injury), in addition to his other problems (cirrhosis, IBS) that were diagnosed.  He is making progress - he does his exercises, he is more alert than before. See some other threads for more information on this ... When he woke up in the ICU and we were talking for the first time, I asked him "What's my name?"  He would say his mom's name.  I asked him who I was to him, he said the doctor.  Now he knows my name, and he kind of knows who I am (sometimes he says "girlfriend", sometimes he says "nice lady").  He is making better connections to things - he knows what his job is.  Someone brought in his thesis that he wrote that was performed as a play (he was a college professor - that was part of his master's), and he reads it.  He was able to read it out loud to me.  He writes on paper all day, it's just chicken scratches. He writes his name and my name clearly, everything else is just scrawls.  

Healing is hard.  He has good and bad days.  Sometimes he's confused, he laughs and/or cries at inappropriate times.  He says his mom came to see him (even though she is in a nursing home as well with dementia).  He knows what things are when I show him (ex. a watch, you use it to tell time).  I tell him that I love him and I won't leave him.  He's happy, but I think he forgets that I was even there.  

He will only go so far, and this is where he will stay.  He will never be able to live by himself anymore, he's too weak / confused to do so.  So sad, but I stay his rock.  I tell him to get stronger and to fight this, I want to see the will to live out of him.  I have the will to live for him.  

[hajk]

@mortensorchid thank you for the update.  It's a really sad situation.  Hopefully he will continue to make more progress and get better over time.  Best wishes!

[stillafool]

So sorry to hear about what you and your boyfriend is going through.  Glad to hear he's a little better.  He is blessed to have you in his life.  I will keep you both in my prayers.