Saturday, November 12, 2011

Mom update:

I think you all know that I had enrolled my mom in Hospice back in August.  When I called them the first time, she was refusing food, liquids, meds....very combative when she was awake, but very sleepy and difficult to rouse most of the time.

I had read, on the Alzheimer's Association web site (www.alz.org) that sometimes people can "rally" when they begin a Hospice program (it's theorized that maybe the extra attention/pampering helps).  I kind of chalked it up to "wishful thinking" and even if some people did rally, well, probably my mom wouldn't, as she was pretty out of it.

Amazingly, though, we've had these last few months as a "rally" of sorts--she began again to eat and drink, and accept her medications.  She even went to exercise class on occasion, where prior to Hospice, she had adamantly refused to attend any activities.  This is not to say, of course, that she got "better", really.  She no longer knows who I am most of the time, and when I tell her "Hi Mom, it's Carol", she says "What is your real name?"  She believes my name is Donna Mae, for some unknown reason, so I say "Well, some people call me Donna Mae"....and she says "That's what I thought!"  And smiles because she knew.

Aside from me being "Donna Mae", though, things have really been stable.  I still go to see her every night after work.  It's gotten more difficult for me emotionally to do that, though, sometimes I really have to force myself, because it's so hard to see.....but I tell myself that no matter how hard it is for me, it's got to be ever so much harder for her....and she needs to know (even if she forgets) that someone loves her....so I keep going.....

And now it's gotten even harder, because it appears that the "rally" has ended.  Once again she's extremely paranoid and delusional, refusing food, water, meds.....hard to wake up.....and of course I start wondering: "Is this it?  Is it time?"  I wonder if it's another UTI.  Even if it is, though, I don't think much will be done, and that worries me in a confusing way.  How can I sit here and do nothing, what if something could help.....?  Did I make the wrong decision by getting Hospice on board?  "She rallied once here, maybe we can figure out how that happened, and we could get her back to that place...."

I'm really struggling with that right now.  My heart is not ready to let go, even when it's so hard to see her.  My heart is still thrilled when my mom looks at "Donna Mae" and says "I feel like we've known each other for years!"  But in reality, on 90% of the days, I know my mom isn't having fun.  Her quality of life is very small.  And me wanting to keep her around......probably that's selfish.  But I also don't want to "hurry" things along, either, because while this disease has been so terrible, and there has been grief at every turn, there are moments and memories to treasure.  Have I mentioned  before that I think my mom has a setback every November?  It took me quite a while to figure out that it's possibly the time change/change in routine that brings on more confusion.  So I guess I shouldn't be surprised at the latest downturn, but I still am.