Just venting. 😔

So about 6 years ago, my mother got diagnosed with HIV. we took her to the hospital after she fell down the stairs. And she ended up going into septic shock and was diagnosed with HIV. She was in intensive care for 4 weeks.

Ever since then she hasn't really been the same person. She became depressed and a shell of her former self. She was in and out of the hospital 2-3 times a year.

2 years ago, I had to call an ambulance for her on Christmas Day Because when I came over she could not walk or speak. She had been bed bound for over a week and my step dad (her husband) did not tell anyone or take her to a doctor. It turned out to be toxoplasmosis (brain infection). She was in intensive care for another 4 weeks. And has had some brain damage as a result of the lesions in her brain. Making her even less of herself.

In March of this year (2017) her and her husband went missing. They were no longer at their home They left all of their belongings there. I had to file a missing persons report. And in July, the landlord through out everything in their home since they had been gone for 90 days. I tried to go over there and save some things - specifically, photo albums, important documents, and a stuffed animal that meant a lot to my mom. I asked the landlord if I could grab those and he cussed me out, told me to get the fuck off his property. I offered him $100 for the stuffed animal. He walked into the house, found it, and then threw it in the trash right in front of my face.

About 2 weeks ago (September 9th) the police found my mother and step dad. My brother and I went to see her, and she seemed to be doing okay. Considering she hadn't been taking her HIV medications - she was in good shape. She asked me to do some grocery shopping for her, get her some snacks. So I did, and on September 18th I went to deliver them... and found her in bed unable to stand, speak, or even sit up in bed. The same symptoms from when she had Toxoplasmosis 2 years prior.

I immediately informed my step dad and brother. Brother ditched school to help me get her in the car, and I took her to the hospital. Her husband told me he was going to change clothes and meet me there. He did not show up for 5 hours.

We didn't leave the hospital until 4am (we had arrived there at about 4pm). I had to give my step dad a ride home since he lost both of his cars to the landlord. He kept insisting that I drop him off at this corner a couple blocks down from his house. I told him no, I can take you the whole way. It's just like an extra 2 min... and when I pulled up at the next stoplight, he literally jumped out of my car.

Next day (yesterday) I got a call from the hospital saying they had been trying to get hold of my step dad all day, and his phone was going straight to voicemail. So they called me as the backup. They said that they couldn't really get my mom to wake up. She just wanted to sleep. And when they did manage to wake her, she couldn't tell them her name or where she was. She has 2 infections - Toxoplasmosis (brain infection, for the 3rd time) and also a UTI (which can of course be deadly to someone with HIV, little to no immune system) They wanted to schedule a meeting with the whole family to discuss my moms future and quality of life...

Today at 9am, myself, my brother, my dad (moms ex husband), and step mom (dad's new husband) went to that meeting. Step dad (mom's husband) did not show up. Multiple people had left multiple voicemails and texts for my step dad, telling him about the meeting. We know that he received those messages because he apparently showed up to the hospital in the middle of the night the previous day, and his phone was no longer going straight to voicemail so he must have turned it on and saw them.

Her husband has been preventing her from getting her medications for years. He blames the insurance for not paying for them - but during the meeting my mom's main doctor said that was an absolute lie. They had sent social workers to their home, they sent police to their home for wellness checks, they left her medications on their doorstep, he said they were getting everything for free. But her husband was not letting her take them. As well as not taking her to the hospital when she got sick. He has been keeping her phone away from her, and not letting her use a computer. He has been purposefully trying to keep people away. He is an alcoholic, a pathological liar, and we suspect that he may be using meth or some other hard drugs.

At the meeting this morning the doctors agreed that her husband has been the biggest barrier to her getting proper care. But as her husband, he is in control of her medical decisions. They asked us if we wanted them to continue to try and get in touch with her husband, or if we wanted to try and get the control to go to me and my brother. We of course said that we wanted the control. He has proven himself to be completely incapable of caring for her. The doctors agreed with that. They said that they would try to get in touch with him again, and leave him a message saying that he does not have to make these decisions; if he wants out then he can get out, and me and my brother could handle it. Hopefully he will agree to that. If not, they said they have other things to try. With his past history with her, and the fact that he didn't go to the meeting; that just helps prove our case that he is neglectful.

The doctors told us not to worry about her being released back to my step dad. They said they would fight that when the time came. But for right now, she is in no condition to go anywhere.

They think it's unlikely that she will ever be able to walk or eat again. She is currently unable to speak. She just nods her head yes and no. She recognizes me and my brother, and also her ex husband (who she hadn't seen in years) But she doesn't seem to really know what is going on.. where she is or why she is there.

The doctors don't want to put her back on her HIV meds. They said that unless she starts taking them religiously, they will do more harm than good. Her body would build up resistance to them and once that happens there will be nothing else they can give her. And we are all in agreement that it is highly unlikely she will take them regularly (especially if she goes back with her husband). So they are only treating the infections and hoping that she regains some coherence. They also said that the disease had progressed so much at this point, that she will just end up back in the hospital I the same condition regardless of if she takes her meds or not.

So our options at this point are basically... do we let her go home with her husband where she will be happier (she doesn't want to leave him) but we certainly die a slow miserable death, without proper care and in and out of the hospital until she eventually doesn't survive it.... or do we want her in hospice care, where she will be pissed that we took her from her husband, but she will get proper care and be more comfortable while she goes..

My mother was always an extremely independent woman. She was a security guard and kick boxer. I know that she has been depressed since the HIV diagnosis because she has had to be dependent on others, she can't take care of herself. And I truly believe that my mother would not like to live like this... bed bound, and unable to do anything. So I think hospice would be the best decision.

I love her and want her to live, I want my mother back. But I don't want her to live if she will just be bed ridden and miserable 😔 and I think she would feel the same (if she regains her coherence then we can include her but for now the doctors don't feel like she is able to make these decisions herself). But first we have get her husband to pass on the control over her health. If we can even get in touch with him.