And 16 days later, she was gone…

I just found this, I had written it a little over two weeks before my sister, Therese, passed away as a result of her liver disease and all the problems it caused. They were keeping her alive with the above machines, including 24 hour kidney dialysis. I was the one to tell them to unhook her and let her go. It wasn't a hard decision, but it gutted me to have to make it.

I’m living in a state of worry and fear over my sister’s health. It's obvious she’s not doing well, but how “not well” is she doing? Doctor’s won’t answer the question “is she ever going to get better?” They just won’t. I guess they can't say because then they'll be liable. Its very hard on the family when you can't get a straight answer.

So we go through each day the same - her resting most of the time (the only time she’s not in pain is when she’s in bed) and me taking care of her as best as I can. The house is quiet. There's a sense of dread in the air.

We know that unless something like a car accident or a massive heart attack happens to me - I will outlive her. She knows how devastated I will be, I know how scary it is for her to imagine dying.

Everything else in my life has been put on hold, even my beloved volunteering and definitely any book promotion. The other day someone asked me “how’s the book doing?” and I swear for a second I forgot I had a book out there. I don’t know how it's doing. I think it's slowed way down after the initial sales, and that’s okay it's the last thing on my mind.

I’ve learned how to force myself through difficult days but right now I feel weak. I keep busy around the house but I hate to leave her alone so I don’t go anywhere unless I have to. I feel stuck. Depressed. Scared. Worried. Sad. She's my little sister. I want to save her.

These feelings are part of what's called “anticipatory grief” and if I ever update my book I will add a chapter on it. I experienced this to a much lesser degree with Keven. With him, I knew it could happen any day but everything stayed the same up to the end. With Therese, I am watching her decline and lose her quality of life. I see her suffering, but not to the point of needing palliative care.

I grieve what life will be without her. She’s my Keven Connection. No one, except my mom, loved or understood Keven as much as Therese and me. No one can share inside jokes, funny memories and deeply painful moments in the same way.

So I clean, I cook, I take care of the pets and the house. That’s about it. I feel like I’m waiting for the second worst day of my life to come, but it could be months or even years. No one knows, but I wish I at least had a general idea. The research I do is not very promising, it's surprising she’s still here if I believe what I’ve read. 

It’s lonely. The Therese I once knew has been gone for a while now.  She’s lost interest in most everything but her dog and me. I act upbeat around her, and silly, in an effort to keep her spirits up, but it's not helping like it used to. 

I can’t believe I may lose her - for real! That suddenly things are at the point of no return, but I think they are. Life will never be the same. I know she’ll be okay and where she’ll be and who she’ll be with after death, but hey, what about me? Thank God I still have my brother and my aunt.

I hope I am wrong, I hope she pulls through and this is just a temporary setback - but who am I fooling? 

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During the 7 days she was in the hospital I still could not get a doctor to be honest with me. They kept saying "we're trying to find a liver" and I'd say "But can she withstand that surgery? (its a long one). They would not say yes or no. FINALLY on the morning of Day 7 a doctor decided it was time to tell me the reality - there was no coming back from this. His words, "if she were my sister I'd let her go now", and so I did. I wish someone would have had the compassion to say that days earlier because it would have relieved Therese from her awful situation sooner.

Question: I only saw her personal Doctor once during the 7 days at the hospital and like the others she would not give me a straight answer. Therese had been seeing her monthly for 3 years so I knew her well. After T died no word from her doctor or her office. Is that customary? To just put a patient's file away in the "deceased" pile without a word of condolences to the family? I knew everyone on her team (4 people) and none of them acknowledged her death. It made me feel like she never really mattered to them.