I need to pep up--I'm really down

The good news first:  I didn't end up getting laid off (at least yet) because the judge deemed my job to be "essential" so it will still be funded even though the government has shut down.  I know some things might change if the shutdown lasts for over a month, so there is still some uncertainty....but at least I don't have to worry about that for now...

And the rest?  Just sad news.

My mom has been extremely sleepy, to the point where she can't/won't wake up.  She is refusing food and yesterday she refused liquids too.  I'm very afraid, because although there are "good" days in between these no-eating/drinking days still, the "good" days are where a) she opens her eyes, b) she asks about my day and c) she eats a few bits for supper--so as you can see, even the "good" days aren't very good any more.

I'm really grieving.  My birthday was July 7.  It was the first year that she didn't know it was my birthday.  And lately I've been so much wanting to just call her up to hear her voice.....but then I have to remember that she doesn't know how to use a phone any more, even if she was alert enough to talk....

The nursing home was concerned about her sleeping so much and tested her for another UTI.  Of course it was positive, and the culture showed that the UTI might respond to an oral antibiotic, so they started her on it....but nothing changed at all.  So the nursing home called me to ask me how aggressive I wanted to be with finding out what's going on....and I said I don't know.  Right at this moment, she really has no quality of life that I can see....she's not enjoying herself, and even the "good" days aren't very good.  But if there is a treatment that could improve her quality of life, I don't want to forego that, either. 

I'm scared.

I requested that the nursing home social worker contact me about getting my mom started with hospice.  When this was brought up a couple of months ago, I thought that we should reach a decision as to the resistant UTI first.  Then my mom got a little better for a couple of weeks, so I put it off....But I think it's time.  And the denial part of me is screaming and pounding the floor with her fists.  My mom can't die, she just can't.  But she's going to, and unless she starts eating and drinking, it'll probably be sooner rather than later.

I woke up this morning and remembered that the social worker would be calling today, and then yesterday came back, where my mom couldn't seem to summon enough strength to draw liquid up into the straw, and where she got angry with me for trying to get her to drink even one swallow of liquid....and how she slumps over in her wheelchair, and how I'm having a harder time understanding her, and she's having a harder time finding any words at all.....and my heart started pounding and I got all scared again.....I wanted to go back to sleep, but of course I had to go to work and even if I could have stayed home, with my heart pounding like that, chances are, I wouldn't have been able to sleep anyhow.....

And then I realize:  I've been "taking care of" my mom for over 20 years, since my dad passed away from lung cancer in 1987.  At that time, my mom's entire life was my dad and us kids (my brother and me), and in addition, my mom never learned to drive, so she mostly depended on the city bus and my dad for transportaton......but my brother and I were both young adults by then, and we "flew the nest" shortly after that....so my mom ended up pretty isolated and started drowning her sorrows in beer (she had never ever had a drinking issue before my dad passed).  I tried to get her to try new things, but (as was to become the story of my life for the next 25(?) years) she refused to try new things unless I went with her.  So I got her to join my bowling league, even though she had never bowled before.  I made sure we got out to eat, went to places where she wouldn't go otherwise...one year we went to Duluth and stayed overnight because she said she hadn't been there in years......and I took her to the casino, I even took the "seniors bus" with her to the casino, hoping that she would decide to do it herself once in a while....but really....she never did take much initiative to try new things on her own....maybe it's just her generation, or her personality, I don't know....

But the same thing continued even when she moved to the assisted living facility, because even though they had a lot of activities and stuff, she was afraid to try them without me.  So I attended the sing-a-longs, exercise classes, and went along on the assisted living bus to go shopping (once again hoping she could do it herself, but she never could) and attended all the special celebrations they had there.....and when my mom transitioned to the nursing home, she wouldn't go to the church services without me.  I still go to "church" at the nursing home every Sunday, although in the last few weeks, it's been about a 50/50 chance of her being alert enough to go.....and now, it's ice cream.  It's the same but different.  I get to the nursing home every night at about 7pm (that's when I get back from work) and at 7:30 the staff brings around snacks.  Although the rest of the world can see that I'm overweight, my mom has consistently been convinced that I don't eat enough, so she wants me to eat ice cream (the nursing home serves ice cream in little 4 oz cups).  And she will only eat ice cream herself if she thinks she is doing it in order to get ME to eat some.  So every night for the past few months, we've had ice cream together.  Even now that she's been needing me to feed it to her, she still won't eat it unless she's convinced that I've got some too, and that I'm going to be eating it if she eats hers.  Yesterday the ice cream was the only thing she ate or drank.  And she refused nearly all of her pills, too.  Unfortunately, this "I'll eat it if you'll eat it" only seems to work with ice cream, not supper :-(

My point, I guess, is that I've been "taking care" of my mom for so very long....I truly have no idea of how my life would be if she was gone.  I have planned so much around my being there for her, I'm already starting to feel lost....even on the days when I get up after 3 or 4 hours of sleep so that I can go to "church" with her, I feel a sad disappointment when she isn't awake enough to go....

And there's the other side, too....my mom's been "taking care" of me (of course), for years, too.  When her Alzheimer's was yet just some "eccentricities" and not yet truly apparent, she would walk to a local dollar store and buy me bags and bags of food from the dollar store.  Way more than even a family of 8 could eat, even if they didn't eat anything else ever....but she would do it all the time, because she was concerned that I wasn't eating enough.....and she would get very hurt if I tried to tell her I already had plenty....and she would call me every night just to say hi.....when I think of all the times I really didn't have much to say, or was too busy to take the time to have a real conversation, it kills me, because I would give anything for just one more phone call......

I don't know how I'm going to get through this.  Before my mom got it, I thought Alzheimer's was just a disease where people couldn't remember stuff....kind of like an old person's amnesia....and every time my mom has moved to a different stage, there's been grieving involved....now it looks like she's running out of stages...