One day, maybe two weeks.

"I'm sorry to tell you this, but I think your mom might pass as soon as the next day.. at best I think since she young and a fighter.. she might have two weeks, it's really hard to say..."

That's what the hospice nurse told my sister today.

Our minds began swirling with all these words that the Social Worker told us we needed to prepare for before her passing... Power of attorney.. Trust... Mortuary preparations... will.. advance directive. 

We've been working non-stop to prepare, but still we wonder...did we take care of everything we needed to? We don't know.  If we didnt.. how do we do anything with her in the condition she is in?  Can we just ignore it and spend time with her instead?  We don't know what the right answer is. 

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Shortly after my last post, she was admitted into the hospital for a week. We had many visitors come see her during that time. Each time someone came, my mom would burst into tears as if it was the last time she would see any of them. 

She also got attached with a permanent lung drain to help with her coughing.  With so much lung in her fluids, it didn't make sense for her to keep going to the ER, getting stabbed and drained over and over. So the doctor recommended having a permanent catheter(tube) plugged into her lungs, so that we could drain her fluid as needed.  It basically looks like a limpy translucent straw that sticks out of the side of her rib cage.  It not the most comfortable to have a tube impaling you permanently... but it can keep her alive. 

We've been draining 3-4 cups of fluid out of her every-day. It always shocks me how much fluid comes out! The lung draining is also very painful for her,  often times while draining, she screams in pain and tells me it was more painful than giving birth to me. (which is supposedly the most painful thing she's ever done in her whole life)  We cringe at her screaming and ask if we should just stop.... but the nurse reassures us it's the right thing to do as she can't die from pain, but she can die from not breathing. Good news is I have learned to drain it in such a way that doesn't hurt her as much.. bad news is because "I do it better" than the nurses.. and my mom has developed a distrust of the nurses and prefers for me to drain it. 

Even after the hospital, my mom refused hospice. It was a really difficult two weeks... She is an extremely demanding patient. We ended up realizing to make it work, we would need 5 people to wait on her all day. We were all beyond sleep deprived and our patience was wearing thin, even my eternally calm, sweet and patient sister was starting to feel on edge.  My mom somehow transformed into a 2 year old pregnant lady...

She wanted a different food every meal.. like a pregnant lady. When she wants it, she wants it NOW. Like a 2 year child, she insist and throws a tantrum.  It could be at 12pm or she could want it at 3am.... meaning you have to cook it.. after you cook it, she might not like it, and if she does like it, she only eats ONE bite.  

While that one person is constantly cooking.. another is stroking her back to stop her from an anxiety attack, and then another is helping her look up something (drugs or legal) she suddenly thought of, and another is cleaning either an underwear she soiled, or sheets she soiled or the billion of plates she goes through a day.. and another is doing a grocery or food run.  

But great news!!..FINALLY after 1 week in the hospital and two weeks of home care, we finally got my mom to agree to hospice AND a caretaker.  It was a huge relief to me, my sister and all the friends that had been taking shifts at our home to care for her. Whew! 

For a while her condition seemed to stabilize a bit.. and we were hopeful, but just these past two weeks..her condition rapidly deteriorated. Now she is completely bed bound. Her movements are those of a limp doll... She speaks very little and eats very little.  Today the nurse told us we might have as little as one day left... we don't know what to think or how to feel... it hasn't hit us yet. 

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As overwhelming as this whole experience has been.. I'm so thankful to have my sister! Enough to think that if I ever had kids, I HAVE to have two. There are times we feel so alone in this...  but at least alone in this together! We have seemed to discover that a majority of our Aunties are under the impression my sister (Tiffany) is completely helpless (as they tell me) and that I (Michelle) do nothing (as they tell my sister, Tiffany) and we can only assume they get this info from our mom.  It's hurtful and it saddens us greatly to hear when we both know we are slaving away night and day to take care of all of mom's provisions. My sister is anything BUT "helpless" she's far from it and taking the brunt of everything that's going on with my mom! and I definitely don't "do nothing"  But despite hearing this, we know everyone is just trying to voice their love and concerns in their own way, and aren't there to visually witness all we do.  We have been thrust into becoming a Jack-of-all trades in fields we don't specialize in-- an on-call nurse, a made to order cook, a gardener, a maid, a masseuse and a personal shopper. 

I'm so thankful to have my sister, and I know she is equally thankful to have me.  Whatever happens, we have each other. 

Michelle