Mama's "Evaluation"

I don't know if I mentioned it before but the neurologist wanted Mama to be evaluated due to the hallucinations she was having. It was with a behavioral psychologist. Her PCP had also referred her for a psych evaluation for the same reason. Originally they had said it would be an all day thing, starting at 8:30am, the latest we could come being 9:30am. But after his assistant & I talked at length about her situation, she said she would talk with the doctor & get back to me. He decided that he could probably do what he needed to in just one afternoon. So blessedly the appointment was at 1:30. Mouse & I loaded her up & took her for the appointment last Wednesday.

He & I sat & talked about the situation, both medical & her frame of mind while we waited for the neurologist's office to fax over her records. From what he had available on her, he wasn't really sure what she was there to be evaluated for. She was present, but not really there — if you know what I mean. As the first information trickled in — the results of her CT Scan — he was beginning to see where it might be headed. Since I had only been told the results were "within normal parameters" I asked him what he was seeing.

He said that she had some shrinkage of the brain as well as some atrophy. Did I know what that meant? Partly — the doctor told me about the shrinkage when she was in the hospital last December, but no one had said anything about atrophy — that parts of her brain was dead or dieing. The nature of MS is to attack itself, so it's been attacking the vessels that carry the blood flow to the brain. He illustrated it as a hot dog — the vessles being the meat, and the bun the outer protection. When the MS attacks it, eating away at the bun, it's left unprotected & eventually dies. The ones that survive have to work harder to carry the blood where it's supposed to go. Some work so hard that when they do make it to the front of the brain, they break through & slam into it, causing pinpoint strokes, which also does more damage.

What was Mama's reaction? She had actually dozed through a lot of it, & the rest I doubt she understood. I don't plan to ask her just in case she didn't catch it. Chances are she might forget it again, but if she doesn't, why burden her with something that can't be changed?

When the rest of the info came in, he said they were wanting him to evaluate her for *@@*. Yeah you understood that about as well as I did. It's some form of alzheimers. He said from what he's learned so far, all we would be doing is spending a lot of money & time to wind up not being able to do anything about what they learned. They might give her a pill to help with the hallucations, but did she really want to take another pill?? She said not if she didn't have to. So, that was that.

As for the hallucinations, play along with them. That's hard to do when she's wanting you to pick up something you can't see. I've tried that before & she just gets frustrated because I don't believe her. (Once she was talking about pills everywhere, on the bed, on the table, falling off both. She kept trying to hand them to me & my brother. We would pretend to take them or pick them up but she knew what we were doing. She held out her hand to me & said, "Here, take these make believe pills since you don't think I have any." Mama is a smart cookie.) I told the doctor I couldn't do that & would just tell her that I don't see what she sees. He said that was fine, too.

Since she seems to "see" things at night that upset her, he suggested leaving a light on the bedroom. Not a dim night light sort of thing, but a regular light. Then there wouldn't be shadows for her to see things in. That made sense. So, that night I turned on a light in the bathroom that shown on the window where she said people try to get in. I turned on a small lamp on the opposite side of the room where a man hides in the shadows by the closet. And I turned the floor lamp on beside her bed so that people couldn't stand around it & look at her. I didn't hear a peep out of her the entire night — or the next, or the next. So either that really works, or the antibiotics are kicking in & she's not seeing things.

At least that was my theory until she started mentioning seeing things during the day. Not scarey things, but things on the bed, on her table, etc. Just while ago she wanted me to take the bands off her legs & take those staples out, too. How did they get there? Punkin had put them there while she was here. No, Mama, you only get staples if you've had surgery, & you haven't had any. The conversation moved on to other things & in the middle of my talking to her, she went to sleep.

So I have to do what I've been putting off; something that I said I was going to do before, but just never got around to it — calling hospice. You never want to admit the end could be next year, next month, next week, tomorrow, today; but sometimes you have to. I'd rather be prepared than have to make arrangements when you have no other choice. I did that with Daddy & really prefer not to have to do that with Mama. Is that being selfish? I don't think so.

Tough Decisions

Well, Mama's not making a lot of improvement.

The first antibiotic she was on seemed to make her crazy symptoms worse. So the doc changed it to one that had worked before — or maybe it just seemed to since she got another UTI so soon. She almost seemed she might stop the crazy talk, but it just led to not talking at all. She wouldn't even eat or drink anything Thursday. Friday she ate as usual, & drank without trying to bite the straw in half; but was still talking crazy. I don't know which is better. We did have a short and totally sane conversation this evening though. It was the first in a long time.

But I've had to make a tough decision: hospice care. Our situation won't change in the day to day around here. There are only two advantages I can see:

1] They will have a nurse come out to check as little or as much as we want.

2] If it ever comes time that her health or mental state doesn't allow her to remain here with us, she'll be in a hospice facility instead of a nursing home.

So tomorrow I make that call. It doesn't mean that I've given up; it just means that I have to be prepared for anything and not be floundering when that time comes. All this makes me think long and hard about what will happen to me when I get older. Maybe that's a good thing about Big Daddy being 10 years younger than me so he can take care of me when I'm older and more decrepit.

Sometimes we understand a message better when it is simply illustrated...

I have to remind myself that as bad I think things are at times,

they could always be worse except for the Grace of God.

::yawn::

Mama had lots of visitors today. Of course, the only ones I saw were the nurse & the preacher. Last night when I came in she asked what I had been doing. I said chilling. She asked me if that's what Daddy was doing. I paused a moment & said "Probably."

When I brought her lunch today, she asked me if Daddy was eating, too. "I don't know." After lunch she laid there with her hands up in the air like she was doing something. When I asked what, she said she was cleaning the kitchen.

When the nurse was here this morning, I was still upstairs; but Eeyore (yes she's still here) said that her oxygen was 88 so she suggested she wear her mask. As a result, she stayed in bed today; which, given the amount of visitors she had, was probably the best thing for her.

Earlier, I heard her yell at someone "Because I've lost my mind." I'm sorry — I didn't go in there & ask. I do need to get the kitchen cleaned up after dinner & the coffee pot made; then check on her again.

Oh yeah, I've heard from Medicare on the appeal for the ambulance ride. It was denied again; they don't pay for those kind of things. I have the right to appeal it again to an independent contractor, which I plan to do. I'll be restating the original reason I think the claim should be paid, along with the statements for the two previous trips they did pay for. I also plan to call the hospital & speak with them about the nurse's behavior that night & how all this stemmed from her personal opinion, not the doctor's diagnosis.

But that's a story for another time. I'm really tired today. Mama kept me up last night partying, so I'm turning in early.

aaarrrrrrgggggghhhhh!!!!!!

And a few other expletives that I won't include.

I started to call this "Two Steps Forward, Three Steps Back" but there's already been so much dancing around here I've lost count.

It seems that Mama is starting to have more "off" days than good ones. She frequently sees things — or people —that aren't there. She glides her hands through the air as if pulling string even though nothing is there. She wants to try & feed herself but often winds up with quite a lot on her bib, the floor, or the bed if she hasn't gotten up. If it's finger foods, she raises her hand to her mouth as if she's trying to take a bite; but there's nothing in her hands & she just winds up licking them. I know she needs to feel she's making an effort, & I let her before finally taking over.

One early evening we had finished dinner at the table & she was going to her room to brush her teeth before getting in bed. I darted upstairs to get my paperwork & laptop so I could stay in the livingroom a while. In the short amount of time it took me to get back downstairs, she had managed to pop a wheelie on her scooter & was in the hallway laying on her back with the front wheel up in the air!!

Thank God Big Daddy was home! I yelled up the stairs for him, then ran over to check on her. She was ok; just laying there looking around as if this was a normal-every-day-thing. We finally managed to get her situated and in the bed. This tells me that times she can be left alone when on the scooter are dwindling. This tells me that times on the scooter will become less until the wheelchair will be her only option to get out of bed. Of course, that is going to restrict her independence as well as mean less time for me to accomplish things around here — as if there wasn't little enough time already.

That may sound harsh, but I don't mean it to be. I love Mama & it was my choice to have her live with us & take care of her. I don't think I thought it all the way through as to what it could evolve into; but even if I had, I would have made the choice. I don't want to see her in a nursing home — or "care facility" as they sometimes refer to them [as misnomer if you ask me].

So I will just have to plan my respite budget better so that I'll be able to have a few outings that don't consist of just errands & the grocery store. I've also got to take better care of me, starting with eating better & getting more sleep — restful sleep. The doctor has changed my blood pressure meds a bit due to higher readings. I've been having Mama's nurse check my BP when they come out. I've noticed when I am particularly stressed I have a brief headache or areas of my head that just hurt. If I get still, I'll go to sleep for about 30 minutes & wake up fine. I've also been told to check my blood sugar varying times of the day to see if it's being affected either by the stress or perhaps the change in the BP meds. It's just a never ending cycle.

I did manage last week to get balcony off the master suite cleaned up & ready to hang out on. I figure if nothing else, I can go up there for a bit each day & just enjoy the breeze [or blasts of wind lol] & some quiet time. I wish it was screened in so I could enjoy it in the evenings without fear of being carried off by the skeeters. [That's mosquites for you non-Southerners lol!] Maybe I'll use some Avon Bug Guard so I can go out there some evenings.

Well, speaking of taking better care of me, I guess I'd best get some lunch. I've lots to accomplish today & only 3 more hours with someone here to take care of Mama. Peace!