Our Hospice Journey - Week 6 Observations

The following is an update on my Mom
and our
Journey through Hospice.

If you missed my first installment on our Hospice Journey and the drama that brought us to this point,
please take a lookie see at my previous post:
Our Hospice Journey, the Beginning

~~~~

Dad & Mom on their 40th Wedding Anniv. in 1994.
(Dad was 15 yrs. older than Mom & didn't make it to their 50th)

So, I know all our family & friends have been wanting an update and I really feel I owe it to everyone, but the truth is, I'm not sure what to say (but I'm sure I'll think of something)...

It's been 6 weeks (46 days to be exact) since Mom's dramatic fall that led to me placing her in hospice and I have to say, my Mom is one tough cookie -- far exceeding the initial survival expectations of the doctors; however, in my daily visits I am seeing quite the conflicting mix of slight improvement vs. end-of-life (EOL) failings.  So I think with this post, I'll just list a few of my observations...

First, the Small Improvements:

1. A slight increase in appetite.  Mom has gone from consuming 100-200 calories a day at first, to now perhaps 200-400± calories a day; yet still not enough to sustain one in the long-term. Her desire to eat varies greatly from meal to meal and she often skips meals. The increase is most likely due to a change in medication that can increase appetite.  [Update:  I knew the minute I said she was doing better at eating, things would go the other way... scratch the eating part.  she has consumed maybe 400 calories in the last 4 days.]  

2. Staying awake/alert for up to an hour at a time.  Again, this varies greatly -- at first she was staying awake for 15 minutes at a time, but now she sometimes stays awake and converses with me for up to an hour, but those days are still pretty rare.  Some visits she is only able to stay awake for 10 minutes.  One of the hospice reps. shared with me that during one of her visits, Mom never opened her eyes while she was there, just talking with her eyes shut.

3. Helps herself more.  Well, yes & no, good & bad.  She is able to use her right/broken arm that is still in a stint more to feed herself, however, the nurse & I kept harping at Mom that she needed to press her button if she needed something (like pain meds) and she wouldn't do it.  But now, perhaps we have created a monster and she presses it for anything and everything... fresh coffee, a cookie (at 2 a.m.), and she gets agitated if they don't come fast enough, like they are her personal room service.

And Now the Signs of Failing (all typical end-of-life (EOL) symptoms):

1.  Confusion!  Here I'm not speaking of just not knowing what day it is... that would be expected considering she is sleeping more than she is awake (one of the Big 3 EOL/Dying Process symptoms), but now we have to take with a grain of salt EVERYTHING she says as it is a mixture of cognitive & confused.  Mom tells me one thing and says the opposite to the aids -- there's always 4 versions to her stories and sometimes she comes up with some real zingers -- extremely irrational!

2.  More Pain.  Her hip, leg, and arm pain seems to have increased just this past week and she is asking for more meds.  Mom is currently taking a hydromorphone called "dilaudid" which is a typical opioid (narcotic) given for pain relief at EOL.  Dilaudid is a derivative of morphine that Mom is given with acetaminophen four times a day + she can have more pain medication up to every hour if needed.  The tricky thing with dilaudid & morphine is that they can also mess with breathing and actually end their life quicker -- there's a fine line.  [Update: They have upped her dilaudid to every 4 hrs. around the clock.  This will help with pain, but she will sleep more and no-doubt eat less.  It's a no-win situation.]

HERE is good link on hospice meds. and end-of-life symptoms.

3.  Shortness of Breath. I haven't noticed this, but Mom told the hospice RN that she is experiencing shortness of breath quite often. The nurse did offer to order her oxygen, but Mom is refusing it, which is her right.  Mom said she thinks shortness of breath just comes with old age -- Mom is pretty set on her ideas.

4.  Vivid Dreams & Conversing with the Dead.  Mom sometimes tells me about her dreams as this has become her new reality with sleeping so much.  Recently she told me how her and Dad (who passed away 16 yrs. ago) were talking & picking over the food, but she didn't say it was a dream.  Her dreams are now becoming a problem in that she imagines she is more capable than she is and she thinks she can actually do what she is dreaming up.  Recently she has wanted me to buy her a cane (she will never walk again), and bring her sewing machines & mixer.  The reality is that she is too weak to do anything and I often have to physically bring her hands out from under her blankets just so she can eat.

5. Sleeps more.  Sleeps with her eyes half open.  Mom has been falling asleep while in the middle of eating a meal, sitting (raised up) in bed holding her spoon or coffee cup half way to her mouth ready to take a bite/sip, but is out like a light... rather mannequin-like. Additionally, she often sleeps with her eyes half open which is an end-of-life thing.

6. Withdrawing/Staying in Bed.  Although the aids offer to get Mom up, Mom says she is happy snuggled down in bed.  Sometimes she has big ideas that she wants to do something, but then when the aids offer to put her in a recliner or wheelchair, she refuses.

~~~~

So, as you can see, the failings out-number any small improvements.  And although Mom can sometimes put on a good front with others, I see all the little red-flag signs that she is failing.  It's not that death is imminent, it could be months to weeks, or she could have a heart attack any minute... in her frail condition, it wouldn't take much.

 How am I doing?  Well, okay.  Stressed.  To tell you the truth, I went into this knowing nothing about Social Security or Medicare and Mom kept very poor records (throwing out more than what she should have), so organizing her records and paying bills has been a maze.  Just making a change of mailing address or discontinuing her satellite service seems to take an act of Congress. (rolling eyes)  I also find it hard to not be in control of everything -- there have been times where I believe some of the nursing staff is negligent and I have to take a deep breath and walk away.  I really do appreciate the good nurses!!  I feel my own life is in a holding pattern right now (which I have read is typical); my mind is elsewhere and I'm just going through the motion of everyday life, afraid to plan anything in case I get "the call" (and I do tense up every time the phone rings).  I've decided that some day this week I'm going to visit Mom early and then treat myself to a day at the mall -- I need the mental break!
I'm still learning to relax, but I'm okay.

  From all my research and my own experience, it seems like the one BIG question is always, "how long?".  How long does the hospice patient have to live?  There are end-stage indicators, but it's impossible to say for certain.  Life expectancy percentages are vague in the few studies that I have seen and are really of no value.

One thing that we know for certain is that God has ordered our steps and our days and herein we can find great peace.

Seeing his days are determined, the number of his months are with thee, thou hast appointed his bounds that he cannot pass;
~ Job 14:5

        




Thanks for Visiting!
Until next time. 
Blessings, Jane