Here are the past few months in a nutshell:
I tried my mother (Stage 6) in Day Care. The third time I took her, she was "touched," reportedly frozen in self-defense. The owner filed a sexual abuse report with the State. By the time the State Investigator called asking if Mom was having any repercussions, she was into her second UTI since the incident, with behavioral/medical side effects. During this time the Psych upped her diagnosis to 'Alzheimer's and psychosis,' but wanted to hold off starting anti-psychotic meds. I chose not to pursue the case because how were ANY of us to know if her changes were due to repercussions, UTI effects, or progression? We had a couple of really good weeks around Thanksgiving. Then one more UTI false alarm. At last week's Neuro appt he said, "It's time in the disease to medicate."

I think it's time to say whoa!!! My head is spinning! Please help me see all this with a clear mind before I make any more drastic changes for my poor Mom.

1. Is there a hotline number where someone "gets" what I'm feeling about the whole day care matter? Don't feel guilty from friends just aint cutting it. Or if you have any magic words, I'm all ears.

2. How do you keep track of your LO's behavior for doctor's reports? What do you tell them? I've had a heck of a time getting these changes down on paper for these last visits. I reported some of her severe, one-time episodes but could that have been misleading as her common behavior? I think I become so complacent to her gradual changes between appts, I don't know what to tell them anymore. All this change lately has just been too much...overlapping fluctuation!

3. The UTIs always throw Mom into deeper delusions and hallucinations. That's usually how I know she has one. Because of the back to back and then possible third, the neuro started her on Macrobid permanently, to be taken every day from now on as prevention. I hope her vomiting in bed last night wasn't a side effect because we really need something to stop these UTIs. Do you predict she will have problems with this? It's 50 mg, not as strong as the usual, but even while on antibiotics she seems to have odd behavior. Anything specific I should look for?

4. I think, of course, all these circumstances have a lot to do with her behavior, don't you? On one hand I agree with the psych to hold off on a meds change. He didn't medicate at the time of the incident and we've gotten through two "bad man is going to get me" episodes, drug free, with lots of reassurance that she's safe now! Thank God they were brief and easily enough distract-able. But just the fact that she HAD them, scares me. When my brother was here at Christmas, he commented and reached for her Santa necklace. She reared back shaking her finger at him, "no, no, no!" I never want to underestimate what my mother may or may not know. She is a violated woman, AD or not!

5. On the other hand, maybe it is time to medicate. Since I didn't log properly, I don't know if her seeing "the children run over by a car" was during a UTI or not. That was a one-time episode. Again, it was very brief and I was able to distract her pretty easily. Her most common is wanting to "go over there and kick their ass!" That one is a daily. Heck, sometimes I just say, well, let's go! c'mon, let's go kick some ass! Arm in arm we go to another room. However, she did wander for the first time last month. Gone in a flash while I was putting away groceries. Found her down the street mad because no one was "helping the lost little children."

6. So, the neuro prescribed Zyprexa but it was $500/mo. No way we can afford that. So he increased her Seroquel 25 mg to twice a day. It has always knocked her out at bedtime and she (usually) sleeps through the night 10-12 hrs. But trying it in the mornings the past three days has been nothing but craziness--all day! I didn't give it yesterday and she was SO much better! I called the neuro, but the nurse didn't call back.

Good heavens! Am I making any sense at all?

Wow, you are dealing with a lot. I'm sorry but I just don't have any answers for you. I am appalled that the day care failed to provide a safe enviroment for your mom!
As far as the Seroquel goes, do what works best. Often the doctors are really experimenting with these drugs and don't really know how the patient will respond.

By the way, my grandmother also suffered from AD and she always saw children everywhere.

You are so much further into this AD than we are so not sure I can help much except to say that I ah here and understand the frustration and "at a loss" feeling. Hope someone with more experience can offer you some guidance.

Sames u,
Gosh, that was alot to grasp. I don't really know if there's any specfic answer to your questions. I do know that with my mom, things really do change on a daily basis.

If my sister comes over to watch mom, I'll tell her that Mom is now doing this or that before going to bed at night, and to watch out for it. Well, when we get home, my sister tells me that Mom did not do that before going to bed. Or when brother and sister in law are here, I tell them Mom has not been eating well. Well wouldn't you know, I get home and he says she ate great!!

I don't know if there's anyway to be specific with the doctors on anything Alz. patients do. And I think that most doctors do understand that. I guess what you really have to do is just go by the things that she does the most often, and not the things that she just does once in awhile.

I guess I would not assume that everything she does is due to a UTI. I think its just the way of the disease, although UTI's seem to change them a bit. The last time mom had one she was always very irritable and argumentative. Once I started her on the antibiotics, it seemed to be a bit better. In fact I think she may have one again, but I'm really having a hard time trying to catch her urine. She waits till the last minute to pee, and by the time she gets on the toilet, half of it is on the floor.

As far as a hotline, I dont' know of one, but I'm sure you could find that out by googling that. I google everything. The problem with a Alz. patient is that its so hard to prove. My mom told me one time when she was hospitalized that my sister in law hit her. My sister in law told me Mom hit her when she was in a rage as she was trying to calm her down. Hmmm - who do I believe?

Maybe rather than day care, you might want to start trying just to get someone in your home instead for you to get out or get some respite. I think every nursing home or facility should be required to have camera's constantly going, especially with Alz. patients. Gosh, they have them in casino's and other places. Wouldnt' you think it would be required for the elderly.

Let us know how things are going. Try to write everything down as soon as you can after an episode with date and time, and see if you can put your finger on something definite for the doctors.

Its so hard sam, so very hard. You're doing the best you can with what you've got to work with. Don't try to figure out everything, as you'll go crazy.

Keep in touch,
Jackie

I've been pretty embarrassed to come back to this post, realizing I didn't make much sense. Thank you all for getting through it and showing your support. I was 'lost.'

Jackie, you are a dear! You're so right, trying to figure it all out had me in a state of.....trying to walk on marbles!

We had our appt with the Primary yesterday. I was able to see her privately. She disagreed with the neuro wanting to start Zyprexa and said some patients just can't tolerate Seroquel during the day even though it works at night. So, we'll hang tight for three months, allow the Macrobid to work on the UTI problem and see how she does. And, right again Miss Jackie, to just keep note of what Mom does most often.

It helped to talk about the day care with her. She said to keep reminding myself that---in this case---Mom's memory loss is a blessing. I sure hope so. I wish I could forget.

Thank you all again. I need you, and I appreciate you ALL!

In caregiver love,
Sam

We used to use one of the local assisted living centers that offered respite care as well. We arranged for my FIL (I refer to him as Old Navy or ON) to be there for 4 hours twice a week so that I could take care of my appointments and shopping done. I needed it just as bad as he did.

The care center usually offered afternoon entertainment and social events that gave ON a chance to be around other seniors and he actually developed some friendships. Mind you, he couldn't remember their names or what it was they did together, but he looked forward to being there after about a month.

The staff there would make sure that he went to the bathroom and would help change him if he had an accident. I would make sure he had a complete change of clothes and several Depends in case of the inevitable accidents.

Sam,
Please don't ever be embarrassed to come back to any post. Hey, go back and read some of ours. Many times we don't make any sense, but we all can read between the lines as most of us have been probably had the same thoughts where our loved one's are concerned.

They're are times when all of us have started panicking at one time or another, and continue to do so. Then we hear from our friends here, and they have a calming affect, so we then start to figure things out a little at a time. That's what we're all here for.

And writing our thoughts down really does help. So confuse the hell out of us, as most things help not only the writer but the ones that are reading too.

Jackie

Yes, please do not ever feel embarrassed about anything you say here. This is a place where we can speak freely and feel safe. Please take care and keep coming back to us.

I'll chime in with a "don't be embarrassed" too. You are a little farther along in the ALZ than mom and I are, but I think medication-wise somehow you will get gut feelings about certain drugs that always turn out to be the best thing for your LO. I've found it's true for me. If you are ever given a recommendation to try something or discontinue something and you get a nagging feeling that your LO will suffer for it, I say take them to another one of the doctors and get another opinion.

One of the things we can feel a tiny bit better about is that it is very likely she doesn't remember what happened. As far as how I chart progress of symptoms for mom, I am now only reporting ongoing issues (obsession with her eyeglasses and case currently) and if she has one-time problems, I usually can't even remember them to tell the doctor about them. I also find that problems she has here at home with me are not problems she has when she stays with my brother.