I'm on autopilot, so I think I'm clearheaded enough to write this.

Mom's crashed hard within the past week. Around this time last week she was eating, drinking, talking coherently, etc. I couldn't see her the following day because of work. The day after, though...

She couldn't speak except for a few words here and there that made sense. She'd start off a sentence, then descend into a word-salad of babble that hubby and I tried our best to make sense of. She refused to eat and drink. She also spit out her dentures and refused to put them back in. Anytime anyone tried to help her, she lashed out. Thankfully she didn't hurt anybody.

The not-eating-not-drinking thing continued until yesterday when the NH told me that, by law, they had to send her to the hospital. At the hospital she pulled out her IV while they wheeled her down for a CAT scan to ascertain as to whether she had a stroke. No stroke. All her labs came out fine -- no UTI, no bleeding anywhere, nothing. She physically refused the swallow/gag reflex test and became so agitated they had to tranquilize her. You know how somebody can open their eyes and not realize you're there? That was Mom. I don't even think she realized I was holding her hand.

Had a long talk with the nurses and the attending doctor. The consensus is that she's fallen off the late-middle-stage ALZ plateau and is firmly on beginning late stage. There was nothing else the hospital could do for her except to either give her an MRI and/or a feeding tube. I refused both because, after everything that's happened, I can't see putting her through any more agony.

The "saying goodbye" part? Out of all her babbling, hubby and I both managed to piece out that 1) she's going to see my dad, and hubby isn't; 2) she's afraid she's going to die like her mother did, alone and in a strange place; 3) she wants hubby to take care of me and for me not to worry (sorry Mom); and 4) she wants to play cards with her brothers like she always did.

I don't know what to say or think. I've been on autopilot all week. Good thing I've been on vacation...I'd be a basketcase if I was at work.

*blank*

quote:

Originally posted by Moms_Buddy:
The end times are tough, EM. Seems like nothing you do can be enough and actually, that's the way it has to be, but it doesn't keep me from having the firm opinion that I don't like it one little bit... A high is not necessarily a bad thing - sometimes it "sparks" Mom...

I didn't get a chance to visit today because of work, but hubby reported that the nurses told him she ate 2 tbsp. of mashed potatoes with mixed veggies at lunch He forgot to ask them about the meds, though.

quote:

Can she go places outside the facility, EM?

Sure can We used to take her back to Ye Olde Watering Hole (our local bar/restaurant) once a week -- this was before the denture removal -- so she could nosh on chicken fingers and visit with everyone. The last few times we'd taken her, though, she either fell asleep or created some sort of ruckus that'd divert everyone from the fact that she didn't want to eat, nope, no way, no how. She now has no desire to go anywhere. If we take her downstairs to the patio, she becomes frightened for some reason (maybe the flowers are gonna attack? *shrug*) Ditto visiting the birds and fish in the reception area. The last car ride we took her on made her very nervous. For the time being, we decided that perhaps we should follow her lead and not offer to take her somewhere. Maybe it'll change, but I'm beginning to think it won't.

The other thing hubby reported was that Mom and her roomie were wearing each other's clothes. Now roomie is a good 4-5" shorter than Mom and probably weighs a good 20 lbs. less -- ???? Part of me wishes I'd seen it, but then I probably would've giggled my head off

The end times are tough, EM. Seems like nothing you do can be enough and actually, that's the way it has to be, but it doesn't keep me from having the firm opinion that I don't like it one little bit... A high is not necessarily a bad thing - sometimes it "sparks" Mom... the only reason I would be concerned is if it makes her TOO over the top. Your Mom and my Mom are at similar places where for the most part (within reason), anything she wants is okay with me...
Can she go places outside the facility, EM? Mom used to LOVE Ryan's Steak House because she could hit the Mega Salad Bar, then the dessert bar. That little woman can still put away salad... Her appetite is okay - she just can't EAT very much or it will overload her digestive system. Different strokes... I'd love to be able to take her to Ryan's one mo' time, but that's not possible... And besides, then I would whine that I just wanna take her to Baskin-Robbins one mo' time... then it's be to Cuco's for Mexican and a sip of Margarita one mo' time... I've always been a procrastinator

Y'all hang in there. No matter what, we're with ya all the way.

No sweetie you explained it perfectly, really...

quote:

Originally posted by Bunnys_grl:
See Em this doesnt make sense there is something there, is there anyway you can hold off on her meds for a day or so to see what kind of response mom gives? I know this is probably silly and elementary of me in a way but this just sounds to me like this is because of the meds not the disease I mean someone please correct me here if Im wrong in my thinking if mom has a basic want whether it be ice cream or pie doesnt that say something?! If she was (and Im sorry Em really blunt here) in fact passing her appetite wouldnt be there at all I seen this in last stage Cancer patients they dont eat nothin no matter what you try.
Your mom is still trying to eat.

Maybe I didn't make myself clear -- but then again I've always had a screw loose (or so I've been told)

Mom DOESN'T want to eat. They'll offer her stuff, including her beloved ice cream, but she'll say/indicate no. They're hoping the megace will jump-start whatever appetite (if she has one) is locked in there.

It's a trial for us getting her to eat/drink something too, which is why we bring ice cream/shakes/whatever with us, thinking that she likes them; therefore, if she is going to eat anything, it'll be that. Hubby can usually cajole her to eat/drink. Mom will take a few bites/sips, then say she's done. At least it's something.

The consensus is split on whether it's the disease or the meds that's causing the appetite loss. The thinking is, if the megace doesn't jump-start anything, then it's the disease.

*hopes she explained the more clear this time*

BG has a point. With both my mom and my husband they didn't eat in the end and we couldn't even get my mom to take a teaspoon of ice cream or pudding somthing she never refused. We did have a period where all she would drink was shakes. She didn't want to eat any food. Dentures came out and never went back in also about 2 years before she died. Em I know how hard this is for you. It's the unknown of what is to be that is really exhausting. You have to make sure to take care of yourself a bit better at this time. Know you are in my prayers.

See Em this doesnt make sense there is something there, is there anyway you can hold off on her meds for a day or so to see what kind of response mom gives? I know this is probably silly and elementary of me in a way but this just sounds to me like this is because of the meds not the disease I mean someone please correct me here if Im wrong in my thinking if mom has a basic want whether it be ice cream or pie doesnt that say something?! If she was (and Im sorry Em really blunt here) in fact passing her appetite wouldnt be there at all I seen this in last stage Cancer patients they dont eat nothin no matter what you try.
Your mom is still trying to eat.

quote:

Originally posted by Bunnys_grl:
Oh man Em I feel for you this is exactly how MIL got when on these meds, not settin still the whole thing....you gotta get them to change these hun I bet its just like MB said plus the Ativan this was the other med MIL was on with the Namenda they switched over in the hospital to Seroquel and now her behaviors are better, not great, but better.

Well, how's this for a twist? When we went there this afternoon, the charge nurse told us that Mom refused all her meds both last night and this morning. She also refused to eat *sigh*...BUT hubby and I had brought her a strawberry shake from the Baskin Robbins down the road, thinking we could mix it with the strawberry Ensure.

Anyway, between blabbering three separate stories that had nothing to do with each other, Mom managed to down the shake-laced Ensure. The nurses were thrilled!

The house doc has also decided to taper Mom off both the Aricept and Namenda, saying that she's at the point now where neither is doing her any good. She's still on her cholestrol/HBP meds as well as the Megace and Ativan...if she doesn't refuse them, that is.

I asked what happens in a case such as hers. Comfort care, basically. They'll take cues from her and not force her to eat/drink unless she wants to. I was reminded again I can rescind the advanced directives at any time. I can't. Not with what went on in the hospital last week.

*sigh*

Oh man Em I feel for you this is exactly how MIL got when on these meds, not settin still the whole thing....you gotta get them to change these hun I bet its just like MB said plus the Ativan this was the other med MIL was on with the Namenda they switched over in the hospital to Seroquel and now her behaviors are better, not great, but better.

quote:

Originally posted by Moms_Buddy:
If you notice your mom start eating, but getting more bonkers and energetic, remember the steroid "high."

[QUOTE]Nervous System: paresthesia, confusion, convulsion, depression, neuropathy, hypesthesia and abnormal thinking

Oh, lovely...this plus the Ativan and she's going to be swinging from the rafters (if she can climb up there, that is)!

*chuckling while picturing Mom actually doing such*

Em, megace is the brand name for megestrol, which has also been prescribed for Mom PRN for the same thing. The one thing to remember about it is that it IS a steroid and produces a steroid "high" in some patients (like my mom). If you notice your mom start eating, but getting more bonkers and energetic, remember the steroid "high."

quote:

MEGACE ® (megestrol acetate) Oral Suspension contains megestrol acetate, a synthetic derivative of the naturally occurring steroid hormone, progesterone

quote:

Nervous System: paresthesia, confusion, convulsion, depression, neuropathy, hypesthesia and abnormal thinking

Both from this site: http://www.rxlist.com/cgi/generic/megestr_ad.htm

Update:

Mom's still not eating, so the NH is giving her a 2-week trial of Megace. The nurses showed me the entry in their Secret Book Of Medications. It's primarily used for advanced breast cancer, but it's also used to increase the appetite (it's the first drug of choice for a recovering anorexic). Now Mom's not anorexic by any means, but she's now physically battling anyone except ME when it comes to offering any kind of food, even ice cream. Yesterday she kicked hubby when he tried to convince her to drink the strawberry Ensure-laced-with-ice-cream ("It's a shake! You love shakes!") When I tried the same, she rolled her eyes and drank the whole glass.

As a result, she's also getting the Ativan every morning. Yesterday one of the nurses told me they couldn't keep Mom in her chair. She'd stand up, the alarm would go off, and Mom would shuffle down the hallway dragging her blanket behind her. She nearly tipped over a couple of times.

We tried to get her to put her dentures back in. I think she's forgotten how to do it, but if you try doing it for her, she shrieks and thinks you're going to force-feed her.

She's still babbling a storm, however. I'm now "that boy" or "the boy with boobies". Hubby chuckles and tells me once again there was a reason why I shouldn't have gotten my hair cut

Thanks BWB.

He is a great guy. This caretaking stuff comes so naturally to him it's scary. The NH staff asks him if he'd ever consider switching careers. He's thought about it, but that's all.

quote:

Originally posted by Moms_Buddy:
What IS it about ice cream?!!! My mom will do just about ANYTHING for ice cream. I know she liked it before, but it's like the light of her life now!

The hospital doc explained to me that, in the realm of tastes -- sour, sweet, bitter, etc. -- sweet is the last taste to go. There are a lot of pleasant sensations going on if something's soft, creamy, and sweet. Ice cream may not be the greatest thing to eat all the time, but it's something. Plus it also counts more as liquid. The doc went on saying that if Mom decided to have an ice-cream only diet, at least she wouldn't become dehydrated.

I think we're going to continue on the mixing-stuff-with-Ensure plan, if even to ease hubby's fear that Mom's going to become malnourished.

EMB, so sorry to hear of your Mom's condition.
Please try to find some time for you, even if its a short bubble bath, or whatever you like to wind down with. Sounds like your H is a great guy!

I am thinking of you, sending hugs and prayers!

quote:

Hubby sang to her while the charge nurse had me sign the papers (I said no to everything except antibiotics). In the middle of our conversation Mom suddenly sat up, eyes open and wild, and very clearly said, "SHUT UP! I'M SLEEPING!" Then she curled back up and closed her eyes.

And y'all thought she couldn't hear you! Gotta love it!

quote:

Hubby gleefully started telling her to wake up, want some ice cream?

What IS it about ice cream?!!! My mom will do just about ANYTHING for ice cream. I know she liked it before, but it's like the light of her life now!

Yes, she will crash again, so take it one day at a time. Bring her some REAL ice cream, hold her hand and drink up every second you have with her.

quote:

Originally posted by Bunnys_grl:


Em this is exactly what my MIL was like this last month, last week they were all about sedation and that was it they had no faith anything would change... I know what your going through
You never know whats going to happen from one day to the next just live for today thats all any of us can do

Yep, that's all any of us can do. That's why I'm not looking at today (yesterday?) as a miracle.

Em this is exactly what my MIL was like this last month, last week they were all about sedation and that was it they had no faith anything would change... I know what your going through
You never know whats going to happen from one day to the next just live for today thats all any of us can do

((((((((((group hug))))))))))

Update of Sorts:

She's rallying. We went to the NH after the ambulance dropped her off. Still sleeping, still unresponsive. Hubby sang to her while the charge nurse had me sign the papers (I said no to everything except antibiotics). In the middle of our conversation Mom suddenly sat up, eyes open and wild, and very clearly said, "SHUT UP! I'M SLEEPING!" Then she curled back up and closed her eyes.

The nurse and I stood there, shocked. Hubby gleefully started telling her to wake up, want some ice cream? That got her attention. She ended up eating two cups of that Lactaid stuff in between babbling about somebody not doing their job and how angry that made her, interspersed with "yuck but I'll eat it". BTW, she grabbed both the spoon and cup from hubby and ate by herself. ????

Today the NH reported that she was alert and agitated to the point where they had to give her Ativan. Refused her dinner, but drank a strawberry Ensure mixed with sherbet we'd brought with us.

She's now hallucinating, according to the nurses. When you can make out what she's saying, it's a word salad between office work, taxes, my dad's old business partner, somebody not telling her something, and who knows what else. We try playing along with her.

She's said hubby's name a few times. If somebody or I say my name, it doesn't register.

A couple of people have said not to put too much faith in this sudden upswing because the "crash" can come at any time. I have to keep reminding myself of that.

emberson, sometimes being on auto pilot is good.One never knows when our loved ones will turn for the worse.Even when we are given a time it is never easy.
Prayers to all of you