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Monday, January 3, 2011

Mom update

Well, it's 2011.  Officially.  I hope you all had a wonderful Christmas and a Happy New Year.

Me, well, DH had to work, so I took a bottle of non-alcoholic champagne to my mom's nursing home room and we chatted and drank the bottle of "champagne".  She really liked it, which made me feel good, because she needs all the fluids and calories that she can get.  At about 9pm we wished each other a Happy New Year, and I went home to bed.

I'm really sad about 2011.  When I stop to think, I realize that this will likely be the last time I drink "champagne" with my mom for New Year's.  That although I'm happy that she was well enough to do that, she's really not doing very well at all.  She seems to have "leveled out", though, with these super-antibiotics.  There's no more weirdness about getting shot or being hung, no more evil family members, etc....and our conversations, as simple as they are, tend to be based in the "here and now".  So that was an amazing Christmas present, for sure.  Of course, there's a tradeoff:  She's been having horrible diarrhea.  I suspect it's from the Macrobid (the antibiotic for the superbug UTI that she's been having) and I wasn't too terribly concerned until tonite, when I did a search for "Macrobid diarrhea" and found that it can actually be a "rare but life threatening" side effect, leading to a different type of infection.  Holy cow.  It's like Alzheimer's whack-a-mole :-(  Get rid of one problem and something potentially worse crops up.  I hope I'm wrong.  I hope it's just the sheer strength of the Macrobid that is causing the diarrhea.  The notes I read online said that if there is diarrhea, to stop treatment immediately.  I don't think anyone at the nursing home (or I) really thought it was any more of a big deal than regular diarrhea, where the patient could get dehydrated or lose certain electrolytes....and now that I know it could be a big deal, the Macrobid is all done.  She had the last dose yesterday.  So I guess now we just wait and see what happens.

I know what the end result will be.  And my tendency is to deny it and fight it tooth and nail.  But not much will probably be changed by me doing that, except that maybe I'll have fewer regrets down the line.

I'm also considering the possibility of contacting Hospice.  But even though I know that this is not a good situation, and Alzheimer's does not improve, I feel like if I bring in Hospice, I'll be a) jinxing things and b) giving up and I don't want to do either because I really need my mom.  And I know it's silly but I keep comparing her to some of the other late-stage Alzheimer's patients in the nursing home and saying "She's not that bad yet...." but I know that those patients probably aren't dealing with this UTI stuff, either.

My friend Brenda, who was DD's PCA (personal care attendant) when DD was living at home, lost both of her parents in a 6-month timespan, one to an aggressive cancer, and one to a stroke.  I know I'm "only" losing my mom, so I can't really draw a parallel to her pain, but sometimes I have a tough time deciding if losing a parent quickly like that would be worse than this "long goodbye" or not.

And to top things off, I think my brother is detaching himself from my mom.  I call him every night with an update, but he rarely comes to see her and when he does, it's for a very short time.....I'm kind of glad she's not remembering him so clearly these days (I think it's a case of "out of sight, out of mind") because then I don't have to answer so many questions about that....

The whole situation just crunches up my heart.

5 comments:

Grace. said...

My personal experience is that no matter what age we are when our parents die, we still feel orphaned. Assuming our relationship with them was halfway decent, we miss them. That's just how it is.

I'm so sorry you're going through this at the same time you have your DH and DD to worry about.

GB's Mom said...

I lost be father when his heart just stopped beating one night. I knew my mother was dying for 35 days before she actually died. There is no good way to lose your parents. I would strongly suggest you contact Hospice- they were wonderful with my mom and I regret not contacting them sooner. Prayers and hugs.

Reighnie said...

Carol,

Have you guys added cranberry pills and loaded her on vitamin C?

Hubbins is a quadriplegic with a suprapubic catheter. He's prone to UTIs and he's allergic to levaquin. So they were giving him Macrobid and it tore his stomach up. They tried ciproflaxin (which is stronger than Macrobid) and surprisingly even though it's part of the levaquin family, he can take it without reaction. BUT it causes him to have yeast infections because of the strength of it.

So the last couple of times he thought he was getting an infection (and currently) he loaded up on vitamin c and cranberry pills and it actually worked because it changes the acidity in the bladder and kills the bacteria. With vitamin c it is water soluble so it has to be taken every couple of hours to keep it in the system. He uses cranberry pills but 100% no sugar cranberry juice is better. It's also best to keep sugar out of the system because it feeds bacteria, so that would include juices high in sugar and white flour stuff like bread because it converts directly to sugar.

When we first moved here he got an awful UTI because it took so long to get him in to see a urologist. He ended up on IV gentamycin (spelling?) to clear that up. That is a kick butt antibiotic.

I know it's hard because some of these antibiotics wreak havoc on the elderly and the disabled like Hubbins. It's such a hard call.

I hope some of this helps.

Anonymous said...

I don't have any experience with Alzheimer's. I lost my mother twenty-five years ago after a 5 year battle with cancer. It was a tough year. Looking back, I wish she'd chosen Hospice for her own sake when the end was obvious. It was her choice to die in a hospital. When my dad was diagnosed with leukemia at age 89, he decided not to fight it - his decision - but to go with hospice. In his case he stayed at home and I moved back to take care of him there for 8 weeks. All of the hospice people were wonderful, sensitive and caring. They would send meds out to the house whenever he needed something - even at 10 PM. They were right on top of things. Toward the end, I had to personally hire a night nurse to keep him in his home, expensive but we knew his time was short and I could manage to keep him comfortable with her help. There was a hospice facility nearby where he could have stayed - I did check it out and it was very, very nice. He would have been comfortable there, too, with round the clock care - and, near the very end, I was making decisions for him. No matter what you do and you do your best to second guess what your loved one wants, it's hard to lose a parent. My heart goes out to you as you make decisions for your mom, DH and DD. You are a loving daughter and will find the strength.
- Daisy in AZ

Miz Kizzle said...

I can vouch for hospice. It made my mother's passing much easier on all of us. She died of pancreatic cancer and before we got hospice care one doctor actually refused to increase her pain meds because he didn't want her to get addicted. I'm still shaking my head over that one, especially since it was clear she didn't have more than a couple of months to live at that point.
You're a wonderful advocate for your mother. Don't ever think you didn't do enough for her.