Sunday, February 28, 2010

Where shall I start???

This really isn't (much of) a bitching post. But, you can be the judge. All comments - negative or otherwise - are welcomed. "Otherwise" does not include nasty, though. OK?

I wonder if it just gets any better than this...

Ron had his visit with the neurologist on Wednesday and I was less than pleased with the results. He doesn't agree with the 1st neurologist's diagnosis of Parkinson's. He says that Ron doesn't have enough of the overall symptoms and that day his muscles were pretty loose. He said the postural tremors were more from a "dyskenesia" than from Parkinson's. He also was not sure about the dementia portion but I talked to him some at length about the confusion and comments that Ron makes. One of the symptoms of NPH is the inability to hold urine - you get the urge to go, and you go. Ron has had a few instances of that in the past few months but he also has an enlarged prostate so it could also be that. The one thing all doctors agree on is that Ron has so much wrong with him, that it's nearly impossible to determine exactly what disease process is causing what and what medication is causing or has caused the symptoms. Lovely... It's almost like they're saying we can give him a bandaid but we can't fix it.

Got the Aricept increased to 10 mg at night instead of 5 mg. Got the Clonazapam increased to three times a day. He goes back to see him again in three months unless he finds something on the CT scan they ran in the hospital that looks different from the one he ran in November.

Ron still has a lot of confusion and he gets really ticked - not really mad, but definitely irritated - when I call him on it. For instance, he used to see a nephrologist in her office but she had health problems and never did hospital rounds. When he was in the hospital, one of her partners came to see him. He's seen him several times in the past four years. Dr. Moussa came to see him last week as well and said that he wants to see Ron in the office in April (that's when we could get an appointment) or sooner if his blood work is not good (he goes Thursday for that). When I said something to Ron about Dr. Moussa he asked me if that was the neurologist we were seeing that morning (that was Dr. Genilo). I said no and clarified who he was. "Was he the neurologist I saw in the hospital?" was his next question. No, Dr. Abbas was who you saw in the hospital. "Then who is Dr. Moussa?" Your kidney doctor. "Oh, that's too many doctors for me to keep straight." Hmmm... good thing I can do it, eh?

Fast forward two days to Friday. I pulled into the driveway about 5:15 and could smell something burning. I was hoping that someone was cooking outside but I was really afraid that it was coming from my house. It was. I opened the door to the kitchen and could see a smokey haze throughout the house. I started opening sliders and turning on ceiling fans. I was terrible and I thought I was going to vomit. He said the smoke alarms went off for about 10 minutes.

When I asked him what caused the smoke, he said he hadn't eaten all day (his own fault) and decided to fix himself a frozen pizza (instead of the microwave items or the stuff he could have just eaten cold out of the fridge). His back hurt so bad standing and the pizza stone was too heavy for him, so he picked something else out to use. It was the lid to the broiler ban. Not a good substitute, especially when you're adding extra cheese.

I cleaned, and I cleaned. I think I cleaned for about two hours. I had to completely take the oven apart inside as far as I could so I could get the burnt on debris. I had to scrub and scrub the grates. The lid to the broiler will never be the same. I have to admit I was not very nice about having to do it. I wasn't nasty but I did say stuff like I thought we talked about what you could do and what you shouldn't, if you waited all day to eat why couldn't you wait 30-45 more minutes until I got home, why didn't you get something out that was easier, etc. I said that I was not really mad at him but very frustrated that he doesn't think about possible consequences of his actions. He's never been very good about the "what if" factor of a lot of things and he's much worse now. I said it really bothered me to have to come home from work and worry about what I'd find and have to take care of it all. I said it was a lot for me to have so much on my shoulders - I have the weight of it all - and that the least he could do would be to think of ways he could save me additional work.

Yesterday we were both sick enough (by the time I got home from work Friday, I was sick, too) that I called the doctor's office. Ron has near pneumonia and I have strep and sinus infection. Ron got an antibiotic and inhaler, and he got a breathing treatment with the order that an in-home one would be ordered for him. I got an antibiotic. I thought she was going to give me a strong decongestant, too but I think she forgot once she started looking at Ron. I told her some of his confusion problems (one of her employees, Laura - who does all of Ron's referrals to outside doctors and such - had walked by and said hello; once she passed, Ron asked me who she was. He should have known) and she was a bit surprised.

Last night I felt so bad that I got up and got dressed and took myself to Walgreen's. I wanted a vaporizer so I could put Vick's in it. I found one but I also found a little personal vaporizer thing that I ended up buying instead. It has become my new best friend. I plugged it in and took it to bed with me. I laid back on my three pillows (couldn't take it any lower than that because I couldn't breathe) and put it across my chest. I guess I could have had a consequence of that, but at that point I just wanted to sleep and I would have done just about anything to do so.

While I was obsessed with the hunt for the perfect way to go to sleep, Ron was in and out of sleep. I told him I was going to Walgreen's and I'd be back soon. Got home, he was awake. Fixed up the items I got and took them to the bedroom. We were watching Outdoor Space (or something like that) on TLC and Ron comes up with something along the lines of "See, I told you that something like that is what you need to build." I asked him what he was talking about and he said he must be dreaming. About 10 minutes later, something else was said on the TV about their plans and he again starts talking about how I needed to build something to put together an item to make it easier for me to breathe and using the hand-held steam vaporizer I had (that one uses hot tap water; not really something that works well). I - again - told him that he was not making any sense and was just pulling things in from outside areas (in this case, the TV) and sticking them into his conversations.

He thinks he's perfectly rational and I'm the problem.

Wednesday, February 24, 2010

Water Show Videos - finally!

I finally found out how to get videos to upload. A co-worker said he puts his on YouTube and then embeds them here. So... that's what I'm going to do.

Here is the Celine Dion music...

Andrea Boccelli and Sarah Brightman - Time to Say Good-bye...

Elton John - Your Song...

Monday, February 22, 2010

More Vegas views...

Donny and Marie were playing at the Flamingo. This was cool on the side of the building:

This is probably the closest I'll ever get to the Eiffel Tower. It was awesome! I wanted to go to the top but the wait was 50 minutes "standing" and I didn't think I could stand in line that long. Plus, Ron would have to wait on me.

My sweetie by one of the fountains outside Caesar's Palace. Talk about huge! This hotel spanned an entire block. It was amazing and very beautiful.

Hard Rock Cafe and Hotel. It was pretty spectacular looking, too.

One of my favorite views - Excalibur. The night view of it was really pretty.

Vegas views

I said I'd upload some Vegas shots, so here they are...
(I hate trying to upload pictures from blogger so that's why I don't much. How do you all - who do pictures - do it?)

This is a view of the Stratosphere from waaaayyyy down the street at the Pawn Stars pawn shop:

Ron in the pawn shop. Next to him is the barber chair they bought and refurbished and behind him is the Harley that had the pink and red design. The barber chair had just sold that day (probably to a tourist) and the Harley had a $20,000 price tag:

The line to get into the pawn shop:

Inside the M&M Factory. That place was huge - and packed. Ron had to wait outside because there was no room to move for him:

The "other" Elvis. He didn't want to let me take his picture because I didn't have any money to tip him. I really didn't (wasn't trying to stiff him) but Ron and Elvis share the same birthday (Jan 8):

Ron is better today...

Which is good. I'm glad that the bug he seems to have picked up has not turned into pneumonia. Since he does sound better, I'm confident that it will not.

He still has some confusion but it's more of the level that we've been having the past year or so and not an increase like we just dealt with. That's a relief!

I called today to get an appointment with the nephrology doctor; he said he wanted to see Ron in one week. The lady said his first available appointment was April 24. Hmmm.... That's a bit longer than one week. I explained that he had been in the hospital, was discharged, and the doctor wanted to see him in one week. She said she's not authorized to put him on the schedule without clearing it with the doctor. OK - whatever you say. She'll call me back.

Ron sees the neurologist on Wednesday. This is not the same one who came to see him in the hospital. I don't know why this one didn't come, but at least we already had an appointment lined up and don't have to wait on one. We'll take him the new medication list and see what he says.

So, we're looking to the future with high hopes and expectations.

Friday, February 19, 2010

Home from the hospital

Ron's kidney function returned to his "normal" so they took out the catheter. Once he performed the required bodily functions, he was discharged to come home. He has strict orders to keep his fluid intake at 48 oz or less per day and to watch his sodium and potassium intake. For a diabetic with chronic kidney disease, all of these dietary restrictions make meal planning somewhat of a challenge.

Ron does feel much better and he can see that I was correct in insisting that he go to the ER. He said he realizes that I know him better than he knows himself so he just needs to listen to me. That's easy to say when he's lucid, but when he's having an episode of confusion, his "reality" makes more sense to him than what I am saying. I do have durable power of attorney for medical decisions so I can always force my hand if I have to. LOL - I just need to find my copy.

The doctor says he does not have NPH but he does have mild vascular dementia and mild Parkinson's. I read that Parkinson's can cause dementia so I'm wondering how much of this is all connected. Parkinson's > Dementia > Diabetes > Dementia - a vicious circle. He also has high blood pressure, which is another factor in cognitive function.

I believe that he has had Parkinson's for a couple of years as he has been having increasing instances of tremors of his hands. He has the "cog-wheel" effect in his arms when given resistance and told to push against it. He was initially diagnosed with intention tremors but those are supposed to happen when he "intentionally" tries to do something. He has worse tremors when he's at rest - but not all the time, which is weird. He can shake whatever is in his hands right out of them, when he's not even doing anything with it. Makes getting food into his mouth difficult when he bounces it right off his fork/spoon or out of his hands. LOL - makes getting the stains out of his clothes a bit of a challenge, too.

I have to admit the actual confirmation of the diagnosis is a bit unnerving. I wonder how long it will be before Ron can no longer be trusted to stay home alone. I wonder how I'll manage taking care of him, taking care of a house, and keeping my job. Working from home is not an option for me although I have requested to be able to do so more than once. There are a couple of people in my department who have the same job title that I do who work from home at times but that benefit has not been extended to the rest of us. I'm not entirely sure why this is so but one of the reasons I was told regarding one person is that she is perceived as going above and beyond her job title. Hmmm... The last time I went above and beyond and volunteered outside of my responsibilities, I was told I didn't know my place. So - I backed off and now I'm not doing enough. Oh well... that is life in the fast lane. Since I'm not one to make waves, I'll let it ride until I'm no longer able to handle all sets of my responsibilities.

Ron has a really good sense of humor so we'll get through this just like we've gotten through everything else that God has laid in our path. Someone reminded me that He only gives people the amount of stress/responsibilities they can handle. I believe that, too but I wish He didn't think I was quite so capable of handling so much. {grin}

Thursday, February 18, 2010

Water show

I loved the water show at Bellagio so much that I took pictures and videos with my camera. The last one that I did was the best - it had Celine Dion singing the theme song to Titanic and I had the best shot of the water fountains and lights. But, there were a couple of guys - obviously not interested in watching the show - having a conversation over my left shoulder. I wanted to so badly ask them to take their conversation elsewhere, but I did not. I held my tongue and tried my best to ignore them. The funniest thing about the video is the guys' voices can't be heard that much. Instead, I hear these women yakking away and they are LOUD! I also hear someone singing who is not Celine. It ended up striking me as quite funny since I wanted the guys to be quiet. I guess God has a sense of humor because He got me on this one.

I tried for two days (over several hours) to get the video to upload but I don't know why it won't. So, you'll just have to take my word for how great it was. I'll post some pictures instead.

In the hospital - again

We returned home late Tuesday evening from our trip. Ron had been having some issues while we were gone and I was afraid that he was headed downhill. He fell twice in the hotel room, once in the street (when he hit a bump on the curb), and in the Denver airport. By the time we headed home, he was very swollen and his legs looked shiny because the skin was stretched so tightly. He, of course, did not think there was anything amiss with him at all. He thought I was nuts and just making things up.

The crew at the airport and on each of the planes could tell that Ron was having issues. I have to say that Frontier Airlines went above and beyond to take care of him and to make sure that we got to our destination safely. The flight crew on each flight (both going out and coming home) were very solicitous of Ron and did their very best to make sure he was well taken care of. We flew on a propeller plane from here to Denver and back. Those planes have steps and don't hook up to the tramway. Ron can't do steps so they had to hook a small ramp up to get him in and out of the plane. The crew getting him loaded and unloaded were very helpful, but I have to give big thanks to the crew from Denver to here. The gentleman who took Ron from our connecting flight absolutely saved my life. Ron had gone into the men's room and this guy stayed with me while we waited on him to come back out. A man came out a few minutes later and said, "There's a man on the floor in there" and I knew immediately that it was Ron. I had to crawl under the stall door to help him up. The transportation helper was right there with the wheel chair once I got Ron presentable and off the floor. I could not have done it without his help.

Once we got back to the gate, he told the crew there that they would need the ramp and that Ron would take a while to get loaded. We were second on the plane (after another wheelchair customer) and the flight attendant (Tom) was very caring in getting Ron seated, comfortable, and belted in. Each of the flight attendants on each flight helped me with our carry-on (I had Ron's BiPap machine and a rolling bag with his medications and other necessities). I emailed Frontier to let them know how much I appreciated their ground crew and flight crew assistance.

Before we had even taken off in Las Vegas, Ron looked at me and asked if we were home yet. On the shuttle ride from the hotel to the airport he asked me if it had been daylight or dark when we arrived in Las Vegas (it had been 9:30 in the morning on Friday). He fell asleep on the plane almost immediately and slept the entire way to Denver. Once we got to Denver he again asked if we were home and where was our baggage. He did manage to stay awake longer on the Denver to home flight, but it was much shorter.

Once we got home, it was obvious to Keith and me both that he was having some definite mental confusion. He didn't remember what day we went to Las Vegas (took him three tries) and could not remember what time of day we got there (never did get that right). He also could only remember that we had gone to Hoover Dam and only that because it was the last thing we'd done before we left. He couldn't name one other thing we'd done except in generalities (we went out on the street and saw some things). He did not remember that we had gone to the Pawn Stars pawn shop, that we had seen Criss Angel, or that we had seen the Titanic Exhibit. He asked me if I was going to take a picture of the chickens. I asked him what he was talking about and he insisted that I was going to take pictures of the Kentucky Fried Chickens to compare them with the baked chickens that the CSI crew was trying to find with the crazy people at the pawn shop. When Keith and I started laughing at him and telling him we hadn't talked about any cameras doing anything, he said I had set him up.

Keith and I told him that if he didn't let us take him to the ER that I was calling an ambulance. He agreed about 11:30 that we could go. He could see that we were not giving in so probably figured that was his best option. They did a CT scan, took a couple of x-rays of his chest, did an EKG, and some blood work. He was admitted about 3:30 so Keith and I went home to bed. He's got some swelling of his ventricles but not enough to indicate head trauma from his falls. He's also got elevated potassium which signifies that he was headed to kidney failure. Then, he's also not emptying his bladder all the way so they had to put in a Foley to compensate and restricted his fluid intake. The neurologists yesterday asked him how long he'd been in the hospital (he said two days) and what day it was (he said Saturday). They asked him to count backwards from 100 by 7; Ron got to 93 and could go no farther. Earlier, they had asked him to spell "world" which he did correctly. Then they asked him to spell it backwards, and he promptly said "b-a-c-k-w-a-r-d-s". He had a liver scan yesterday evening to check liver function but I don't know the results of that.

We got a solid "mild Parkinson's" diagnosis yesterday with a probable Vascular Dementia, and a "maybe" Normal Pressure Hydrocephalus (NPH). The NPH is indicated by the swelling of the ventricles but they don't think he has enough of the other symptoms. In looking at the list of symptoms online, I think he has more of those than he does for the Vascular Dementia. NPH symptoms include (from

  • Memory loss – check
  • Speech problems – depends on the definition of "problem"
  • Indifference and withdrawal – check; he doesn't really care about much of anything
  • Changes in behavior or mood – not really
  • Difficulties with reasoning, paying attention, or judgment – depends; sometimes

Walking problems, including:

  • Unsteadiness – yes
  • Leg weakness – yes; he has said how weak his legs feel
  • Sudden falls – yes, I think so but he says maybe more balance related
  • Shuffling steps – no; he waddles with a wide gait
  • Difficulty taking the first step – not usually; sometimes he has trouble getting started but not often
  • Getting stuck while walking – not really

Urinary symptoms:

  • Inability to hold urine – not often; only a couple of times
  • Inability to hold stool (less common) – he has two ways he goes: not at all or all of a sudden
  • Frequent urination – no
  • Urgency to urinate – no

Vascular Dementia symptoms include (from

  • Memory problems, forgetfulness – yes
  • Dizziness – no
  • Leg or arm weakness – yes
  • Lack of concentration – not really
  • Moving with rapid shuffling steps – sometimes
  • Loss of bladder or bowel control – see above
  • Slurred speech – no
  • Language problems – no, unless you count not being able to think of the word he wants
  • Abnormal behavior – hey, this is Ron we're talking about (grin)
  • Wandering or getting lost in familiar surroundings – not really; sometimes confused as to where we are and where we're going (I drive)
  • Laughing or crying inappropriately – no; cries at sad scenes in movies
  • Difficulty following instructions – well, sometimes when he's confused
  • Problems handling money – not really; got to have money first (LOL)

It is difficult to determine which of these is the correct diagnosis. Ron's mental awareness does vary depending on how his kidneys are functioning. Are they connected? Probably. Is it a kidney-caused problem? I don't know. I know that it is going to make things change once again for us. I'm not sure I'm totally up to the change or the requirements that it will put on me. I know that he worries that I will put him in a nursing home. That is not even on the horizon so I told him to not worry about it. A friend of ours came to visit him today and Ron said the same thing to him. Garry told him that he didn't believe that was anything I have considered, or would consider.

We shall see…

Vegas trip

We are home and had a great time, with a few bumps in the road. Literally. Ron had some issues and fell twice in the hotel room and once in the street when he hit a bump on the curb with the scooter. Over he went, right into the road. Thankfully, there were several good Samaritans on the street and I had many people helping to pick him up and get him back on the scooter. I was very thankful! He has a few bruises but he didn't break anything. (I'll post the "rest of the story" with regard to the falling issues in a bit.)

We stayed at the Luxor. I don't recommend it to anyone, especially if you are traveling with a disabled person. Or, a diabetic who needs to keep insulin cold. They don't provide refrigerators unless you pay an extra $20 per day for the privilege of having one in your room. No exceptions and if I had issues with it, I could take it up with "corporate" because that is who made the rules. Of course, management could have put one in the room anyway since it was just for insulin purposes. We were already spending a lot of money on the room and had the budget pretty much set in stone. An extra $20 per day doesn't sound like much in the grand scheme of things, but when you are skating by, the total ($80) is a big deal. Customer service isn't what it used to be, that's for sure....

The doors are very hard to get through if you're driving a scooter and there is no one to hold them open. I found one set of automatic doors at each main entrance but getting on and off the elevators can be a problem. To get to the rooms, you have to put your card key in the reader and then push the floor button. Ron could in no way do this. I had trouble getting it in the reader a couple of times before the elevator went somewhere else. We rode down and up more than once before we landed on our floor.

There were no drinking fountains to be had. I found out later that somewhere, between the two bathrooms is a drinking fountain. Evidently we were never there because we bought several bottles of water while we were there.

The Internet is not WiFi. It's hard-wired Ethernet cable that you have to string across the room, leaving it unsafe for others to climb over in an attempt to get from point A to point B. That was one fall for Ron... In order to use my laptop at the table and chairs that are in the room, I had to hold the laptop in my lap (novel idea... "laptop" in the lap!) because the chairs were too low to be comfortable using the table as a desk. Forget using a mouse. The Ethernet wouldn't stay connected and no matter how I did it, I would lose my connection every 10-15 minutes, which meant rebooting my computer each time. I made a personal trip to the front desk but the clerk neglected to put in the request for service. I finally got it fixed the day before we left.

The pool is closed for the season but I could take my room key and go use the pool and hot tub at Excalibur. If I had wanted to use Excalibur's pool I would have booked my room there. In hindsight, it would have been a better choice. If I wanted to use the on-site hot tub at the spa, it was an additional $10 per day (that is outside of the resort fee of $12.95 I was already paying for the "extra" services that I was receiving - like the pool, hot tub, Internet, etc.). Plus, I really didn't feel like traipsing between hotels in my swimsuit and towel. No thanks.

The decor of the hotel was beautiful. The main lobby areas were very nicely done. The "Shops at Luxor" in the Galleria consisted of just a couple of stores. The area was under construction. The gift shops there were nice with items consistent with what you'd find in other Vegas hotels.

There is a food court in the hotel where you can find McDonald's, Quiznos, and a pizza place. But unless you know where to look - or know how to "ask" where to look - you won't find them. We found them on our last morning there. When I asked about places to eat within the hotel, these places were never mentioned. Only the high dollar places were mentioned to me. We could have had more than one meal per day if we had found McDonald's sooner! Since there is no in-room coffee, I would have much rather paid McDonald's price for coffee than Starbucks!

I have decided...

I am an amazing person. LOL - that sounds a bit flaky and self-centered, but I had an epiphany this morning.

I am 100% wife - taking care of Ron in all things that he needs (which is considerable and will increase).

I am a straight-A student working on my 2nd master's degree. I was a straight-A student for the first one, too.

I work full-time and do a darn good job. I'm very conscientious and always give credit where credit is due - and take full responsibility for when I mess up.

I help take care of Isaiah.

I do 95% of the household chores and responsibilities.

I do a pretty darn good job of it all, too.

That takes a pretty amazing person to pull all that off.

Saturday, February 6, 2010

It's February - ALREADY!

January just flew by and it's hard to believe that we're into the 2nd week of February already. I have to admit, it's been a good month. We were able to get our house refinanced and it will save us nearly $300 per month. With the refinance, it lowers our interest 1.5% and pays off our second mortgage. I'm so thankful! We also don't have to make a payment now until April, so we can use the mortgage money from February and March to pay off a couple of other debts. That will save us a little bit more money in monthly payments. I give God all the credit for this to have taken place.

Ron's toe (from his shoe incident) looks great. It has a dark spot but it is healing. His right foot also looks better. Dr. Heady trimmed some around the "hole" and although it still bleeds it does look better. If he wears his new brace, it takes the pressure off his wound and it doesn't bleed as much. I think he bleeds because of the pressure, and the more pressure he puts on it, the less chance he has for healing.

I am excited to be looking forward to our trip to Vegas on Friday. I believe that we will definitely be able to take the trip. I've rented an electric scooter that will be waiting for us when we get there ($120 for the five days but worth it) and we will have a handi-cap accessible room. I can't wait! Ron is finally starting to look forward to going, except the actual "going" part. We have to fly on a small airplane from here to Denver and from Denver back to here. I honestly don't know how we're going to get him in and out of it. He can't do stairs. I know they have a chair they use for disabled individual but he's a big man and I'm not sure they can get him in or out even with it. Oh well - we will cross that bridge when we get there.

I am continually looking forward and looking up!