There had to be a reason why I just stopped writing -- right?

I go back now and look at the date and I guess I know why. Daddy passed away June 24, 2007. I doubt it was coincidence that I couldn't find the urge to write again. Maybe just getting this information up here will inspire me to catch this up. 'Til then ....

They're coming to take me away, ha-haaa.

They're coming to take me away, ho-ho, hee-hee, ha-haaa.

To the funny farm, where life is beautiful all the time, and I'll be happy to see those nice
young men in their clean white coats and they're coming to take me away, ha-haaa!!!

To the happy home, with trees and flowers and chirping birds and basket weavers who sit and
smile and twiddle their thumbs and toes and they're coming to take me away, ha-haaa!!!

They're coming to take me away, ho-ho, hee-hee, ha-haaaaaaaaa!!!!!!!!!!

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!

Isn't life loverly?

Yes, it's a rhetorical question ... sort of like "To be or not to be."


Big Daddy comes home from work yesterday with some distressing news. His company has said for some time they are going to have to consolidate crews until some more jobs come up. They are currently working on the Marsha Sharp Freeway project that runs east 'n west across town. It is in four phases, and they are winding up phase three. Phase four does not bid until June, so until then they have to do what they can to keep people working. We understand all that. But it was also said that this consolidation wouldn't affect your money. It did — in a big way. When a person is guaranteed to receive pay for 70 hours and is driving a company truck with a gas card, and you lose both the truck and the guarantee, then your paycheck is cut in about half.

Of course, he's stressing over it — both the loss of income and the way they presented it to him. There was no discussion, just 'this is it, take it or find something else.' He wasn't given the option of a rebuttal of any kind. AND on top of that, they wanted an answer right then and there. He told them they couldn't spend two days or more talking about what they were going to do, then expect him to answer without giving it some thought. We talked about it and discussed several options — (1) looking for another place to work [there are several options for him, but only a couple locally]; (2) refusing the offer and let them lay him off or let him go, then opting to file for unemployment ; (3) biting his tongue and hanging in there just to keep a job.

He called the EEOC officer and talked with him about it. He was able to get some things off his chest that they didn't allow him to in the meeting. That alone helped a great deal. He also addressed the issue that the meeting was supposed to be confidential, yet details were being told by someone and he felt that was unethical. Also, comments made within the morning meeting could also be creating a hostile work environment for him. The officer did say he would certainly address those issues with the Project Manager. He also suggested that now the emotion of the situation had leveled out, he call and ask to have a meeting with him to clear the air. We're not sure how that will be received. The PM is also a personal friend of Big Daddy, and they have always said business is business — one would not affect the other. But given some of the things the PM has done — or failed to do — in regard to certain situations, one would have to wonder can he truly keep them separate. Big Daddy hopes he can. I think not. I hope I'm wrong.

Big Daddy has a boat financed and he was talking about selling it to get out from under that payment. It and a signature loan I have are both financed at the company credit union. So I called to see what the balance was in each account, and on each loan. We also discussed options of possibly refinancing them. Then, we went to the bank and spoke with the VP about getting a second mortgage on the house: to pay off the first mortgage, and pay off the other two notes. That would free up some money, and changing the weekly deduction into the credit union will free up some more. The mortgage payment will only go up $60 a month which makes it very do-able.

Right now we wait for the app to be approved, then for the funding. Tomorrow he has to go in and start his "new" position. He said it's going to be more awkward for the person he works for than it will for him. I hope he's right. I hope he gets some sleep tonight. His mind should be a bit more at ease about the financial situation. I sure hope so. I hate to see Big Daddy worried.

Be it ever so annoying ...

there's no place like home.

Unfortunately, you always have to come back after a trip. There's the unpacking, going through the mail that came while you were gone, the stack of newspapers, and the same ol' same ol'.

Tuesday is my day to clean the kitchen: wipe down all the counters, the cabinet facings, and I even got up on the step stool to especially clean the ledge that goes halfway around the room [the kitchen and eating area are one room which is why it only goes around half]. It was really irksome to look out the kitchen window and see my paper at the end of the walk. It means the worker is too lazy [or inconsiderate] to pause a moment to snag it and bring it in. She was nearly 40 minutes late, too. I've asked her to call me when that happens. Oh — she forgot.

Mama was supposed to go at 1pm today for a study to see if she has dementia. Duh. I know she does, but I suppose it would be good to be an official diagnosis, and see if there is anything to treat it beyond what we are — which really is nothing. It was foggy and drizzling this morning, so I called to cancel it. Of course, it's now sunshiney and nice, though a bit windy. I think we are going to try and make it tomorrow, even if it starts out like it did today. I can use the time to do a few errands since she'll be there 'til 5ish. Maybe I'll call a friend and have lunch. Yeah, that sounds like a plan.

No respite for the weary....

It would seem an unfettered mini-vacation is impossible. 300 miles from home, my phone starts ringing. Sister has gone to check on Mama & she's having jerking fits and not very responsive. She's wondering does she need to go to the hospital. I told them to call one of the names on the emergency list: a nurse with the home care service who only lives a couple of miles away. She has said before to call her if we needed anything. She in turn gets in touch with the nurse on call — a lady who has been seeing Mama for years — and tells her she thinks Mama has had a massive stroke! Her pulse is 122, BP is 150/80 [Mama's is usually low] and her upper extremities are warm, the lower ones cold. [Her lower extremities generally are due to poor circulation from the MS.]

So we discuss what would they do for her in the hospital if she did have a stroke. 'Not much.' That is mostly due to her DNR. We could call & put her on hospice. We could wait & see how she is in the morning. I chose to wait & see how she was the next morning. That might sound harsh, but I've been through this with her before. The last time we went to the ER which resulted in an EEG and EKG among other things; then an announcement that she had a UTI, and released her to go home — at our expense. Medicare didn't pay for the last trip home due to the comments of a bi*** nurse in the ER who said she was well enough to travel in a wheelchair. Never mind that the woman was so weak she couldn't stay awake. And since she had been transported there via ambulance, we didn't have her personal wheelchair or scooter. There is no way she could sit as a passenger in any vehicle, let alone in the van! I've appealed Medicare's decision; we'll see what happens.

In the mean time, we've gone into the restaurant & were trying to eat dinner when NJ called. She thought Mama should go to the hospital. She didn't understand why I didn't agree with that. I told her I have been through this with her before, then gave her the 4-1-1 the nurse & I had discussed. She had a valid point when she said they could give her an IV; since she had not eaten or had anything to drink all day she could be dehydrated. But it would be ALL they would do, then send her home & we have the ambulance situation to deal with again. Plus, JL [Mama's brother] would have to go up there to make the medical decisions because he is the second on her medical power of attorney. "Well, then maybe we should ask him what he wants to do. I just don't want my Mama to die!" she cries.

I don't either, but Mama's wishes have to be respected and she doesn't want anything done to prolong her life. The social worker asked her when she came out to do the DNR if she was having a heart attack at home and the ambulance was called, would she want them to do anything to save her life? She said no. NJ wanted to know when she said that; was she in her right mind? Yes, she was; it was last year while Sister was still living there. "Oh" was her quiet reply. I told her to see how she was in the morning & we would go from there. Believe me — hearing what Mama's wishes were wasn't easy for me at the time, either, nor are they now.

At 8:30 this morning the nurse was calling to see if I knew how she was. Seems no one was answering the phone. I told her I would call her back, & called the house. "Mouse" [explained later somewhere] had a morning patient so Lazy [the other provider - I couldn't think of any snazzy name or initials for her lol] had come in until she got back. Lazy picked up the phone on the second ring. She recognized the number; I didn't go into details as to why she didn't answer the phone when someone else called. Lazy said Sister had gotten her to take her evening pills last night & drink an Ensure. Mouse said she had another one this morning when she checked on her at 7am, & she drank a whole glass of water as well. She was responsive & talking some. I asked her to tell Mouse the nurse would be out later to check on her.

I called the nurse back & asked could she wait until Mouse was back to go out there. Since she had been there last night through all this [and not having ever dealt with anything like this before] I felt it would put her more at ease to see her examine her herself. She was surprised when she got there that Mama was as responsive as she was. She asked her to tell Mouse who she was & she promptly said "Becky." She swore Mama had 500 lives!

I called a little later & talked with Mouse. She was finishing up her bath so we didn't talk long, but she filled me in on the details & about how much better she was. I sent Sister & NJ a text. They were very relieved that she was better. I bit my tongue to refrain from telling NJ 'I told you so.' It's just rather frustrating when I am the one here all the time, watching this happen more than once, and then several people question your decision. I realize they love & care for her too; but show me some respect & believe in me.

I spent the day relaxing around the room. I by-passed the movie because I went off & left the free ticket at home. I met my friend & her husband for dinner and hit Sonic for a drink on the way to the hotel. While Big Daddy was in the shower, I called the house & talked to Mama myself. You can tell she's tired, but I could understand the majority of what she said. So that's a very good sign.

Right now Big Daddy is in bed — snoring. He has conference again at 7am but they're done at noon. The plan is for me to have everything packed & meet him there at noon for the lunch they'll serve. We grab the bags at 1 & head over to the cheaper digs with plans to meet up with a friend of his later for dinner Saturday night. I just hope it goes off without a hitch. Right now I am going to kick back & watch some TV before getting some sleep. Ahhhh ... I wish I had this bed at home.

Woo-hoo!!

We're going out of town for a few days! We are leaving Thursday afternoon for Grapevine (around DFW), and coming back sometime Sunday. Big Daddy has a safety conference all day Friday and half a day Saturday. The company pays for the room and I tag along to just get away! We've not been anywhere since our anniversary last July so it's a real treat for me.

It's hard for us to get away for a few hours, let alone a few days. I have to make arrangements for someone to stay here with Mama. Oh, there are some short term care facilities, but I haven't really had time to check them out the way I want. So far, everything is set except I don't know which day BJ is going to cover — Saturday or Sunday.

But I do know I am going to have some fun while we're gone! I have a movie pass so I'll slip over to the mall and catch a flick Friday afternoon. I have a girlfriend who lives down there and we're going to get together for dinner that night. Saturday after the conference we'll probably rest for a bit. Big Daddy plays this war game online with people from across the country. One of the guys lives down in that area, and we might meet him and his wife for dinner. We're still waiting to hear from them about that.

But I am excited to just be planning to get away. I can imagine how ecstatic I am going to be once we are in the Merc and headed that way! Woo hoo!!!

Nice Week

Last week was a pretty good. NJ arrived the 9th. Mama was doing much better & getting up every day. Ordinarily that would mean a lot of work for me, but my NJ arrived that Thursday. I think it confused Mama — she kept asking us Easter Sunday where the Christmas tree was & when were we going to open presents. NJ usually only comes once a year at Christmas so I guess it could be confusing for her since NJ arrived that Thursday.

Yeah - I've said that 3 times. NJ & I have not gotten along since we were kids. She is 5 years younger than I, so when Mama insisted she tag along with me or I couldn't go somewhere because of her, it caused a lot of resentment on my part. She said I treated her awfully. I really don't recall.

What I do remember is that one night a girlfriend & I attended a basketball game, being dropped off at the school by her aunt with assurances we could find a ride home with someone going that way. It turned out to be 3 guys from the opposite school who gave us a ride in their van, chugging Boones Farm Apple Wine the whole maybe 8 miles. We managed to go through 2 bottles, having them let us out at the short road so no one could see who brought us home. It was cold & we ran. So by the time we made the quarter-of-a-mile-that-felt-like-three-miles we were pretty wasted — or at least I was.

I made it in the house with nothing more than an "I'm here; good night!" to my parents as I breezed through the living room, they having already gone to bed. But I knew I was going to be sick. I woke my sister, & while I sat on the floor paying homage to the throne, I had her sit on the side of the tub & watch over me so I wouldn't fall asleep & Mama catch me there the next morning. After about 30 minutes she decided she'd had enough & went back to bed. I pulled myself together, splashed cold water all over my face, crawled into bed in the room we shared, & went to sleep with one foot on the floor to keep the room from spinning.

How is that so awful? She says it was much more than just that episode & it was all traumatic. I really don't recall. I do recall once the three of us — me, her & BJ — were sitting outside in my car talking about our shennanigans mostly. I said that I hoped they could learn from my mistakes & not have to go through so much. NJ quipped "When are you going to learn from your mistakes?" Whoa! I love my sister but I wanted to back-hand her; but she was in the back seat & it was a stretch. Comments like that & [what to me seemed like] her usual holier-than-thou attitude made it hard to like being around her very much.

I stayed a few days with her when she lived in Amarillo, & that is where it all came to a head. She let it all out - all her anger, her frustrations — & I stood there pretty much dumb founded with my mouth gaping open because I really didn't recall a fraction of what she had been so upset about all these years. That's when things relaxed just a tiny bit & it was a wee bit more bearable to be around her.

With us being the only ones living here & able to help out the folks as they needed it, & she now living in Ohio, she & I have had many conversations about them. We began to slowly repair the rift between us, warily at first — on both our parts I am sure. After Daddy fell in February 2007 & broke his hip, she began to rely on me even more for information about them & we closed that rift some — especially when he kept going down hill.

I was usually the one who was there ALL the time with them; so ordinarily I should have been there on that Saturday, but Meathead came out to give me a break. Big Daddy & I were at Sam's getting some things we needed. NJ was driving down from Ohio. She was maybe 20 miles away when we got the call he had gone home to be with the Lord & his earthly family who had gone before him. We left everything in the cart & drove home, getting there just a bit before she did. She was devastated; weeping in my arms & saying if only she hadn't stopped at that rest area she would have been here in time. I hugged her, telling her she didn't know that. They had talked on the phone & Daddy knew she was on her way; that was all that mattered to him. I think it was then & there the rift narrowed to a crevice that could be easily jumped back & forth; but maybe that became much smaller this trip. That speculation is based on a rather candid conversation we had while driving around town. Don't know how we got there, and I know it took her a LOT to have it; but I think it's brought us closer together.

Well I've got chores to do so peace!

Something Just For Me?

Have you ever wanted something that was just for you? Time? Space? A book? Strawberries? Yes —strawberries.

You know, I do a LOT: manage the checking accounts, pay the bills, buy the groceries, run other miscellaneous errands, do the laundry, clean the house, cook, make his lunch, take care of the dog, oversee the providers who come in to take care of Mama, coordinate all our medical appointments, refill the prescriptions — Gosh! Is that it? Have I missed anything? Oh yeah, run an Avon business and try to do crafts for resale.

So is it really too much to ask when I go to the grocery store and buy something just for me for others to stay out of it?? Big Daddy knows I love strawberries, especially dipped in chocolate. Well, he was eating vanilla & strawberry ice cream [Blue Bell so you know it already has chunks of strawberry in it] and he just has to get into MY strawberries & add some to it!


"Are you eating my strawberries?" I call from the bottom of the stairs.

"Yeah, sure am. Is that against the law?"


Now it wasn't said in a nasty tone of voice & at this point I know that anything said by me is going to cause an argument. So I merely sigh and continue on my way to the garage with the kitchen trash. Oh yeah, something else I do.

Granted, I didn't tell him I bought them just for me. I didn't put a sign on them saying "Do Not Eat" — but the rule has always been to ask before opening something for the first time in case I have it earmarked for a special dish later in the week. I don't want to have to devour them as soon as I bring them home just to keep everyone else out of them!

Is this a trivial matter? Probably. But when most of your day is spent catering to the needs-whims-wishes of others, whatever you can carve out just for yourself is a precious commodity! I think I'm going to have to head downstairs & help myself to some now. Just having written this is making me hungry for some! And I bet I'll have them all to myself at the moment, too!

What I Do

Ok, I've had some sleep since I first posted - the key word being some. It's sporadic at best.

I've always been a night owl as far back as I can remember. These days it's even harder to get to bed at a decent hour because so much is going on during the day & there's numerous interruptions so I can't get much done. So at night — after Mama is settled in & she thinks I've gone to bed so she will only call me for necessary things — when Big Daddy is in bed snoring [Seriously! You can hear him at the bottom of the stairs with the door shut, or in the guest bedroom downstairs. At times I can even hear him in my craft shop which is one room over from the guest room!] — THAT is when I can sit down & go through the mail, check the bank accounts online & balance the check books, pay the bills, read e-mail, try to gather up all the necessary paperwork for the CPA to do our taxes [better get on that one quick!], and all the other things that went undone during the day.

Whew! Before I know it, it's 3 or 4 in the morning & I drag myself up the stairs to bed. Only recently have I had a provider come in regularly to do things for Mama — like get her breakfast, bathe her, change her gown or get her dressed that day if she's getting up [which she hasn't done much of lately], clean her room, vacuum, dust her things, & do laundry.

Now you may wonder if I have someone coming in to do this on a daily basis [yes 7 days a week] what is left for me to do? Well, first off we only get those services 28.5 hours a week. That's the MAX she is allowed by the government. It's really not much when you consider there are 168 hours in a week. So basically the hours cover 9-1 which leaves me the rest of the day & evening to try & do things as well as take care of Mama.

So what's up with Mama that she has to have all this done for her? She has advanced Multiple Sclerosis. Multiple sclerosis, often called MS, is a disease that affects the central nervous system —the brain and spinal cord. It can cause problems with muscle control and strength, vision, balance, feeling, and thinking. (For more info http://health.yahoo.com/ms-overview/multiple-sclerosis-ms-topic-overview/healthwise--hw190816.html) Advanced MS means that person is entirely dependent on others for his/her personal care & daily activities, is rarely able to leave the home, cannot be left alone for any extended period of time, & has complex clinical issues. While this advanced condition in MS is not common, the level of care & attention required is complex & demanding. (Caring for Loved Ones with advanced MS: A Guide for Families)

When there is no one who can come in regularly, that leaves me to do everything 24/7, which I have pretty much done from the first of the year until about 3 weeks ago. Thankfully, we now have someone 7 days a week & I can get out & get things accomplished [errands, grocery store, personal things] or just get away for a while. It's still hard for Big Daddy & I to plan any out of town trips but we manage occasionally, though not nearly as often as we should because of it.

NJ lives in Ohio. She normally comes down for Christmas, but came to stay 3 weeks this time because Mama was so sick & in the hospital for 10 days. Turns out she had a severe urinary tract infection & she was very much out of her head! She was seeing people & things, spitting, cursing [well, she said ass & ass**** — but even for Mama that is severe! lol] & just overall not herself. It later required more hospitalization followed by 8 days of IM injections of a drug that would normally be administered by IV if in the hospital. She was still having "episodes" as they are referred to, which left her unresponsive, sleeping almost 24 hours a day, & no memory of the previous few days.

The only thing I could think of that had changed was while in the hospital they gave her Neurontin — [Essential Tremor, Extreme Discomfort in Calves when Sitting or Lying Down, "Change of Life" Signs, Pain Originating From a Nerve, Neuropathic Pain, Pain Following an Operation - http://www.webmd.com/default.htm WebMD] — & is mentioned in the MS Guide as a pain medication used for spasticity [an increase in tone in a muscle group so that there is stiffness & resistance as the muscle is moved]. They had her on it 4 times a day & after a discussion with the NP [nurse practioner] I weaned her down over the course of 10 days to where she only took it at night because it helped her sleep. While the episodes seemed to lessen, they were still more frequent than she had them before, & I took her completely off it. Now she is awake & alert, she is back to her normal sleeping routine, though still not completely back to her previous condition. Chances are she's not going to be, but we don't really know yet.

At present she is unable to feed herself due to the pain in her thumbs. She can't hold the utensils & can barely control her cup for drinks on her own. Before she couldn't even manage finger foods [bread, crackers, cheese, etc] on her own because she was so shaky it would take her ages to feed herself. Of course, I had to let her [as advised by PT] because it helped to strengthen her. It was really tough to sit there & watch her struggle, but I knew it was for her own good. Now she is much better at it & we work with her fingers & thumbs to try & make them even better.

BJ [whom I sometimes refer to as 'useless' or my mother's son lol] lives here in town. He's not much help though. In the past it was all because he was an OTR [over the road] trucker & was away a lot. He'd married again & she went with him at first before getting a place here. Gradually he got off the road — not so much that he wanted to, but had to as his right knee isn't in the greatest condition. He had a football injury in high school, a few surgeries over the years that didn't quite heal right, and now it's pretty painful for him. But the reason he's not helping out is his wife [note I did not say my sister-in-law] — which is a whole 'nother story in itself & I am sure I will get around to it eventually. Anyway, BJ only comes every other weekend for about 6 hours. . . That's it. Doesn't come any other time for any other visits. Just those 6 hours on Sunday every other week. And she hasn't come at all — since Christmas of 2007, which is fine with everyone except Mama.

Punkin' comes out the every other weekend my Mother's son doesn't come. She comes on Saturday night after work, spends the night, then leaves around 3 or so on Sunday. That is more of a break & helps me out tremendously. I get to sleep late [lol] & we get to go out & eat Saturday night, which is nice.

I suppose that is enough for this installment. I was really just trying to get the basics in there of the situation here at home. It definitely affects my moods & thoughts, & it seems this is going to be the best way to express them.

New Creation

So here it is ... my first post. Nothing too fancy as it's very early in the morning.

I really can't justify being up this late. It just seems each time I have an appointment scheduled for the next day, I wind up burning the midnight oil.

With that said, I am off to bed perchance to dream of something witty and charming to post here later.

zzzzzzz