In retrospect...

Anyone who has read this probably knows already the reason why I haven't added anything in months.
For those who don't know, Mr. C passed away on May 15, 2009 while in the hospital.
The last few months have been incredibly hard. I'm still coping with the idea that he's not here, he's not at home, and he's not coming back.
My grandfather was the one constant in an otherwise rocky journey. He was the moral compass of the entire family, and now there's very little left of his presence in the physical world. His apartment has been turned in, his car sold, accounts settled and closed. It's sort of frightening how quickly a person can be erased from the world.


RIP Dada, I know you are watching over us all from a more peaceful and sane place.

The Days Go On...

And on...

The good news is that Mr. C had a peaceful night. He still has a slight fever, he's still on oxygen. They started IV fluids today since he hasn't had anything to eat or drink since yesterday and was dehydrating a bit and not producing any urine. The last thing he needs is worsening kidney function. (Mental note, ask about kidney function study today).

I didn't think he'd make it through the night but I'm glad to hear he rested well. I'm so terrified at his outcome now. This is just not what he would want but he isn't done for just yet. Nothing invasive has been done, nothing will be either. I'm sure I'll be talking to the cardiologists again today, but I'm not sure they'll be able to do much more medication-wise. That's been their plan of action, knowing that he wouldn't want to have a risky procedure with an uncertain outcome. I'm still torn - should I give him the better chance of long-term survival, or just ride this wave until the end. Because as of right now, I'd say he's not going to rehab, he's not probably leaving the hospital for a while.

It shocked me somewhat to go into the CCU room. It reminded me so vividly of seeing my grandmother in a CCU room when I went to visit her, just after Elizabeth was born in 2002. I remember that she was on a ventilator and never thought I'd see that type of place again. He's not on a ventilator, nor will he ever be. My grandmother's wishes weren't known or I would have seen to that. She ended up dying a few months later, after a long and painful recovery. I won't put my grandfather through that. I just hope he can see how close to seeing my grandmother he really is. And how happy, what joy that must feel like, to know that your loved one is so close now. I hope that if I ever die, that I can focus on that. So many people he's lost, friends, his brother, his dear parents, his lovely wife - all stand ready to greet him in heaven along with the angels. Sad, yes. I'm so sad to think of this being the end. Maybe it's not. But at the same time, it seems so exciting to be near such a change of scenery.

I went back to visit later this evening and when I got there, my heart sank. They have him on 100% oxygen now with a mask. His O2 sat is still hovering in the low 90's and he's still laboring when he breathes. His blood pressure is up and his urine output improved. The chest x-ray had been read but not scanned so his dear nurse (same as last night) apologized but said that from her interpretation of the reading, it sounds like he may have some fluid in his lungs. They are watching him very closely tonight, hoping that when he actually falls asleep he'll relax and breathe better.

I know it's not good when tonight, he asked my why his hip hurt so bad. I reminded him of the fall, and he seemed to buy my answer, yet again.

The Long and Winding Road

I haven't updated in a few days, mostly because I've been spending nearly all my free time either sleeping (selfish me!) or at the hospital.

I'll try to remember what's happened this week.

May 7 - Mr. C finally got into surgery for the hip repair. Three long hours of waiting, and I got the good news that he made it through just fine. They were still concerned about his heart, but doing the least invasive hip repair with screws seems to have been a good course of action. It's not 100% but at least it can give him a good start to get back on his feet again.

The anesthesia did a horrible job on him mentally however. He was completely delusional, believing that people were dying, he was needed to repair something, and other random paranoid episodes. He had to be physically restrained by me or else he would have been out of the bed, and most likely falling and who knows, breaking the other hip maybe. It was bad, horrible, and heartbreaking. I talked to the nurses who seemed at a loss for what to do, and informed them about Lewy Body Dementia and how unless he was in extreme danger, he should not get any antipsychotics. Good thing, cause that was their plan of action. Instead they decided to try some pain relief and thankfully he calmed down quite a bit.

May 8 - Mr. C was still kind of out of it but looking better mostly. Physical therapy came and had him out of bed twice and he was even eating well.

May 9 - Mr. C looked pretty good today, more calm, less pain and had eaten well. Physical therapy came for his workout and tired him right out. He was sleeping the whole time I visited at night.

May 10 - Not a good day. I got a call from Dr. Emery about Mr. C. He started having chest pains after breakfast and they rushed him to the CCU. He was stable, but having sinus tachycardia and they didnt like the look of his EKG. Some nitro, some aspirin, and heparin later, things started to level out. I sat with him from 1 to 9pm and he would keep having apnea episodes of 20 or more seconds every few minutes. They have him on oxygen too, just to make sure he stays up in the high 90's instead of bottoming out when he stops breathing. Honestly I thought this was it. I didn't want to go home because I kept thinking I'd just be getting a call in the middle of the night or something.

A Ray of Hope

Today was quite the rollercoaster, not only mentally, but physically.

Mr. C was moved from Greer Memorial to the larger Greenville Memorial so that the cardiologist could handle his cardiac catheterization there. Although that itself has some risks to it, they wanted to get a clearer picture of his overall heart function.

I met up with Mr. C who is starting to get more confused and finding it hard to believe he is in a bed. Somehow he still thinks he's standing up on a platform and he's going to fall off of it. I spent the afternoon trying to ground him. They finally came to do the cath at 3:30 and I waited about an hour to find out the results.

Dr. Hudac came to talk to me after the procedure, which went pretty smoothly given all that Mr. C is going through. Dr. Hudac is still very cautious about the heart but was going to give the orthopedic surgeon his opinion that Mr. C would be ok going through the hip repair. The worst option is doing nothing at all, he said.

I met with the orthopedist Dr. Lackey after that and he seems to think that the heart is going to do well enough for us to risk the surgery. There would be no quality of life at all if we leave things as is. So I have consented to put Mr. C under the knife.

I explained to him about the worry of general anesthesia with Mr. C due to Lewy and he said that they would be very comfortable using a spinal instead so that is one less worry on my mind. I dropped off my official Health Care Proxy forms for the hospital so now all the i's are dotted and t's are crossed.

I was able to request a sitter last night through the hospital so that I could be home with K and the family since it's her birthday. Sleep sounds so wonderful.

Fore!

Mr. C is such a charmer. It's a good thing he's so cute because I'm really not a fan of seeing 2am pass by. I prefer to sleep through that time of day.

Today we saw the hospitalist and the cardiologist. Mr. C had an echocardiogram of his heart which took quite some time. They are really concerned now that they may need to beef up his heart to be able to get him through a hip repair surgery. No orthopedist will even touch him right now. So that means he may be facing not one, but two operations.

They are transferring him to Greenville Memorial tomorrow to undergo a cardiac catheterization, which is also a procedure with risk. The hope is that the catheterization will give them a clearer picture of how to proceed.

I'm here in the hospital room tonight so that we can avoid any incidents. He's been talking out and thinks we're golfing, in a boat and a couple of other places. Hey it's late and it takes longer to type on the phone so my thoughts are easier to scramble than an egg.

He's quiet for now. I'm going to lay down on my rock and cover up with my napkin and try to sleep

Crash and Burn: An Unfortunate Series of Events

It's been a bit since last I blogged here, but most of it was for a good reason. The reason I'm back though, is not as pleasant.

My sister was here on her vacation last week, so computer time was more sparse, but we had a nice visit. Mr. C loved having both of his granddaughters under one roof (which hasn't happened since we were teens) and we got to eat out a lot.

I took her to GSP on Saturday morning and she got home without any incident (thankfully!). We vegged out on Saturday but decided we should have a meal out since the house is still pretty wrecked.

We went to Ruby Tuesday in Greenville, and sadly it was a less than stellar experience. The table was wobbly, which agitated me and Mr. C, and Joe's steak was barely cooked. The kids kept rocking the table around.

We had a definite Lewy day - Mr. C decided what he wanted to eat, closed his menu and we made small talk. By the time the waiter came he couldn't remember what he wanted so as usual, I ordered for him. That was ok though. The moment came when his food came - he said at least twice, "I didn't order that, did I?" Although he didn't seem too happy, he ended up really enjoying his food.

Sunday was a pretty quiet day. "Was" is the key word here. It sure didn't stay that way for very long. Mr. C finally made an appearance downstairs around lunch time and I made him a bowl of soup. We were chatting and I decided since I needed to keep an eye on him that I'd start some paint work behind the stove and counters. I got a bit done and decided to do a little touch up on the other wall that was already mostly painted, but had a couple of light spots. Well, I got an earful from him for being up so high on a stepladder, it was unsafe, etc. He was walking towards the front of the house, caneless, and had the kids near him. He tried to turn or avoid something and before I knew it he was toppling over onto his side. It was like it was in slow motion.

I ordered him not to move, even though the hard floor was pretty awful for him. Grabbed the pup who was anxiously licking Mr. C's face and flew out the front door yelling for Joe, then ran back to Mr. C. I grabbed some beach towels and a pillow and got him to stay still while EMS was on the way. I don't think anyone expected it, let alone Mr.C, but he has a fracture of the Femoral neck, which holds the ball of the hip joint. It's not the worst break, but bad enough to require surgery to stabilize it.

I tried to stress that Mr. C is being evaluated for Lewy Body Dementia and in no case should be given an antipsychotic. They even want to stop his Exelon patch because of anesthesia issues, but I'm going to make darn sure that's a last resort.

I'm going to be checking back in with Mr. C this morning and hopefully the night wasn't too hard on him. This sure isn't the way I was hoping to catch some respite.

Side effects may include...

So we're on day 4 of the 'miracle' patch. My grandfather still seems essentially the same, except that I do hear him talking less during the night. I asked him how he thought his memory was, and his short-term recall was less than ideal still, but he said he is having a lot fewer vivid dreams (as he calls them) and hallucinations. He seems a little more clear in his speech but I'm not sure if that's because he's more stimulated having my sister around this week, but so far he's been downstairs for dinner the past two nights and seems much more eager to go places than in the last 6 weeks.
Though he still seems just as sleepy as usual, nodding off at the slightest chance.

A new course

We visited the neurologist yesterday, and it went pretty well.

The neurologist pretty much agrees with my LBD theory, but he's trying to eliminate some other issues and make sure that its not medication or some other electrolyte or medication issue that's causing his problems.

He was given a MMSE (Mini Mental State Exam) which I'm not sure the doctor knew, but I'm pretty familiar with.

It goes kind of like this:
The Mini-Mental State Exam
Patient___________________________________ Examiner ____________________________ Date____________
Maximum
Score
Orientation
5( ) What is the (year) (season) (date) (day) (month)?
5( ) Where are we (state) (country) (town) (hospital) (floor)?

Registration
3( ) Name 3 objects: 1 second to say each. Then ask the patientall 3 after you have said them. Give 1 point for each correct answer. Then repeat them until he/she learns all 3. Count trials and record. Trials ___________

Attention and Calculation
5( ) Serial 7’s. 1 point for each correct answer. Stop after 5 answers.
Alternatively spell “world” backward.

Recall
3( ) Ask for the 3 objects repeated above. Give 1 point for each correct answer.

Language
2( )Name a pencil and watch.
1( )Repeat the following “No ifs, ands, or buts”
3( )

Follow a 3-stage command:
“Take a paper in your hand, fold it in half, and put it on the floor.”
1( )Read and obey the following: CLOSE YOUR EYES
1( )Write a sentence.
1( )Copy the design shown.
_____

Total Score
ASSESS level of consciousness along a continuum ____________ Alert Drowsy Stupor Coma


According to the neurologist, he scored a 25 out of 30. 23 or below qualifies for cognitive impairment. I think he even gave Mr. C a few points. He attempted the serial 7's exercise, but got absolutely nowhere. The doctor decided that reciting the months of the year in reverse was a substitute and he eventually was able to do that.
I'm not entirely happy that was overlooked. He didn't know the day of the week or the day of the month either. And today, he even told me it was April 7th, 1939 and it was a Wednesday. Later though he did seem to remember that my mom's birthday was yesterday which made today April 24th. He used to be really good with birthdays.

The neurologist decreased his Clonodine, which he said might be causing him to be sleepy during the day. He's getting a half of a pill for a week, then stopping it altogether. We also agreed that since he's had 2 years of Aricept and have not seen any change at all, that we're stopping that and going to try Exelon in a 24 hour patch form. We have a 4.5 mg patch for 4 weeks, then the 9mg patch after that.
He goes back in 6 weeks.

My sister comes to visit tomorrow. She's asking me what he's going to be like. I told her he's just about the same, happier to know she's coming. He seems more resigned and almost happy about staying here, so now I wonder if we really are going to be flying him home and then turning around and coming back. I think either way we're going to be going up north for a few weeks to let him visit his family and clean out his place.

In fact, he seems to even be planning to stay here most of the year, but go home for the summer and possibly live with his brother and sister for those 2 months or so. The summer up there is really SO short, sometimes I almost forget about that myself. It's already nearly summer here and it's not even Memorial Day yet, which amazes me.

He really enjoyed the summery weather today though. According to the weather channel it hit 90. It felt all of that.

There is a God...

and he has a really sick sense of humor.

After calling talking to Husband, I called the neurologist back and asked if they still had the appointment. Husband would take the morning off and help me out. No such luck!

Dejected, I sought some cheer in retail therapy. I got the new kitchen fixtures and some new bath fixtures for good measure. Why not. Then as luck would have it, my Site-to-Store order from the W-mart had come in and I took advantage of a cooperative K-Monster and went out.

I returned home only to find that the neurologist has called again, with another opening AGAIN, and another HORRIBLE time slot, 3pm Thursday. Not only do I have to pick up the K-Monster, but I also have to be at the bus stop for the E-boo at 3pm. Why me!?!!

Another frantic call to Husband and I am pretty sure I have coverage now. I didn't have this much trouble finding coverage when it was the Christmas crunch at retail and I was scheduling 3 departments!

Sad thing is, I am not that important, or busy, it's just that there's certain times I can't be flexible around now.

A neurologist? For who at this point...

Seriously.

I'm not sure who's in worse shape mentally. Mr. C or me. I know I'm doing well as a runner-up thats for sure.
I think it's mostly feeling like I'm tied to my house.
I have things to do and my entire 'normal' is just non-existent now. I try to schedule things with Mr. C, to no avail.
The only thing he cooperates with is the aide coming twice a week. Little does he know but I want her to start coming three times a week now.
Laundry calls.