my night (probably depressing...)

[Gen88]

dad may have what resident has (Noral virus, nora virus?), thank god, he has been pushing her to just walk into the light, he wants to
collect his life insurance and needs her to give up to do so.

docs do not want to put her through a new transplant right now, attempting to stay with meds. not sure her heart is just experiencing rejection. hopeful it is though. They want to avoid using the artificial heart. concerned her turnaround is going so slowly. she has to try and turn around right now, on her own. She SEEMS better (slightly). prognosis is tentatively optimistic. keep going with foresis, hope the heart changes on its own. odds dont matter, assume 50/50, she can not afford to turn any worse. they will continue working to help, ANY people who have a sign of illness should stay out. Keep out in general as much as possible. she is tough and brave, resilient, hopefully this makes a difference. fingers crossed. Doctor Fowler has seen hearts at this point get dramatically better. he gets the impression that even though she is not getting BETTER, she is not getting any worse yet. She will hopefully be able to get through this and they will ween her off the meds.


Tonight I went in to see my mother after everyone had left. Cleaning my hands with the clear harsh smelling gel. I put on my mask,
and get ready to walk in. I spend five minutes just looking in at her, sleeping peacefully in her bed, seemingly healthy, she suddenly
wakes up and looks around groggily, she sees me through the window and weakly waves me in.  I double check my mask and slowly go inside. We begin talking, her asking about the family, me asking about her condition, she tells me she is "getting better" with a sense of weakness I want to believe, but im not sure if I can. My eyes start watering and I am suddenly thankful there are no lights in the room. I know tears are streaming down my face and behind my mask, but I hold my voice as steady and calm as I possibly can while we keep talking. I keep telling her I know she will get better very soon, and she just has to try for a couple more days, but I soon realize I need to leave the room, lest she see me crying. She asks if I can get the nurse to bring her medication to sleep and some Ice chips.

   Leaving the room, I keep holding back my tears. I walk over and ask the nurse to go in and see her, he does so as I quickly walk
to the nearest restroom. As soon as the door closes I begin to cry, a river of tears are running down my face, I cant breathe. It is the kind of crying where you are unable to make a sound, you are in pain, you cannot breathe, your mouth is open, but no sound will come from there. I cry for ten minutes and someone knocks at the door, I quickly clean up as well as I can, throwing on my pajamas. Walking out, I avoid looking at anyone and head toward the quiet room where I will be sleeping.

   On my way there, I notice the chapel. I am not a religious person, but I have always thought of myself as spiritual, though I have recently begun to question if there is really anything following this. I quietly walk into the chapel and walk to the front, dropping to my knees I start crying again, this time yelling. I tell god if he takes her I will hate him. I beg him, I plead with him, I know I cannot make it through the challenges he has already given me without her there beside me. If he takes her, I do not know what I will do. I dont see the point of trying anymore. I tell him if he is there, prove it, save her, he should be able to, so why not just do it. She deserves none of this, she is faithful, she is the kindest person I know, and she always cares for her body, almost as well as she cares for the people around her in life.

   I write down everything I feel in the signature book by the door, it seems others are signing this to thank god, I beg with
him and curse him, telling him I do not want to live in this world if this is his idea of right. letting cruel men prosper, while a
loving person like her is given this fatal disease for no reason.

   When I finish I wipe my eyes, some of my tears have fallen on the pages, I leave them like an offering. I quietly make my
way back to my little sleeping area,  my little makeshift bed suddenly looks comforting, the blankets seeming to be enough security to
hide me from this cruel world...I hate it here, I will not push on without her, its just not worth it. With this final thought I drift into my nightmarish land of dreams.

[suzifrommd]

Hugs, Gen88. Hope you find the strength through this awful time.

When my mother was going through her decline, it helped me to pray for acceptance. Like you, I'm not religious (not even sure about God in the first place) so I prayed to my inner strength. It helped a little.

Hang in there and know that we're here to listen if you need our strength.

[spacial]

Thank you Gen. Thank you for sharing these very difficult feelings.

[Gen88]

thank you both for your condolences. This was a bit easier to deal with when my uncle was here, as he is supportive of my transition and does not feel the need to out me in every conversation with a doctor or nurse. He was also paying for clean clothes and a room each night instead of having to wash in a sink here at the hospital where I am currently sleeping.

Now I am with the rest of my family, whom, other than my mother and uncle, are not supportive of me. They constantly tell people around that I am their (brother, son, grandson, nephew, etc...). It makes it VERY hard to deal with the immediate when my own relatives and family members feel the need to degrade me and make me a subject of interest instead of just realizing that I am trying to support my mother, I am her DAUGHTER, and I am VERY close to her. I just wish this were my father in the hospital instead of her. If he were in there, I would not feel a need to be here, I would not feel sad, I would honestly feel some happiness.

Im sorry, still rambling. Her condition is getting worse, the doctors are now saying she needs to pick the transplant or artificial heart if the meds do not work in the next 48 hours. The artificial heart will give her heart 10 days to try to heal, but the sacrifice is her heart may have some of the buildup come loose in the process, which will cripple her legs or kidney permanently. The transplant is worse, she only has a 10% survival chance with it, but it may be the only other option...if they can even get her a heart, they may not give her that option.

[spacial]

I went to visit my mother, just before she died. She had an accident which caused hers, but she was in her 70s.

I turned up and was met by nurses who seemed to be very wary until one said my borther had warned them I was coming. One because quite defensive when I asked about my mother's treatment, (I am a registered Nurse, but went there as a relative).

The point is, you're there for a reason. If the others are so petty, so immature they can't resist the temptation to take a pop at you, ever under the circumstances, then you are the better person for that.

It's not easy when we grow out of our families. Mine became petty and intolerable.

You hold your head high. You are doing what needs to be done and facing up to what we must all face up to, eventually.

And you are the better woman.

[Rachel]

Gen88, I have known what you are going through. I lost my mother 1 1/2 years ago after 3 month in a CICU from a surgical site infection. Lost my dad 21 years ago. Both died after a prolonged period of intense suffering. During their illnesses and when they died there was intense feelings. I to did not want to go on. I to questioned the existance of god. You need to remember your Mom wants you to grow and be healthy and happy.

Your Mom loves you very much and you have a special bond. Cherish every second with her now. It took me 10 months after My Mom was gone to remenber the good things my Mom and I shared. But I can assure you your Mom loves you and encourages you and want the best for you. You and she have shared a lot and are close. It is natural what you are feeling and no words can ease the pain.

You are among friends and we feel your pain, hugs.