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.
Friday, August 28, 2009
Monday, May 11, 2009
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 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.
Sunday, May 10, 2009
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.
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.
Tuesday, May 5, 2009
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.
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.
Monday, May 4, 2009
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
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
Sunday, May 3, 2009
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.
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.
Monday, April 27, 2009
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.
Though he still seems just as sleepy as usual, nodding off at the slightest chance.
Friday, April 24, 2009
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.
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.
Monday, April 20, 2009
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.
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.
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.
Rise and Shine!
No, please don't.
I'd much rather you sleep peacefully.
No, I'm not changing your medication.
No, the dog is not in your room eating your shoe.
Yes, you've had your blood sugar tested.
My thoughts:
What the heck was up last night? Mr. C was up every half hour. Not up, but restless, talking, laughing, moving around. Seemed to be very agitated and thinking I was lying to him about medications.
He's homesick, I can tell. Do I send him home in two weeks with my sister, or keep him here until June? If I send him home, the condition would be that he has more care. The cost of that for a month might actually be worth my sanity, but I'll have to figure that all out.
I'd much rather you sleep peacefully.
No, I'm not changing your medication.
No, the dog is not in your room eating your shoe.
Yes, you've had your blood sugar tested.
My thoughts:
What the heck was up last night? Mr. C was up every half hour. Not up, but restless, talking, laughing, moving around. Seemed to be very agitated and thinking I was lying to him about medications.
He's homesick, I can tell. Do I send him home in two weeks with my sister, or keep him here until June? If I send him home, the condition would be that he has more care. The cost of that for a month might actually be worth my sanity, but I'll have to figure that all out.
Sunday, April 19, 2009
Heavy Breathing...
No, and not the good kind either.
I listen to heavy breathing mixed in with some random muttering for about 15 hours a day. That's if he's sleeping well. If he's not resting quietly, I hear more muttering.
My favorite part of the day has now become the 'morning wakeup'.
I'm greeted by any one of a zillion possibilities when I ask the same question, "How did you sleep?"
Most times, he will start with, "Just fine, but..." and that's the point where things get interesting.
Here are a few examples:
"I slept great, except for all the kids running around in here." (There were none)
"I slept fine but I'm tired from packing cheese all night." (Uh...ok)
"Awful, that lady kept walking around in here and wouldn't leave." (Wasn't me I swear!)
So you see, things can get kind of interesting.
The other night he got up during the night to use the bathroom. Good deal, I say. Well, unfortunately for my poor kitty, he locked the cat in his room with him. Then reported to me that the cat was scratching at the door all night. Well, yea...
The night before last his overhead light was on in the morning when I went in. He told me he got up during the night needing to use the bathroom, turned it on, then laid down and fell asleep before he could get up again to turn it off.
My thoughts
Sometimes I feel like I'm watching a really bad sitcom. Sometimes I feel so sad for this wonderful man trapped inside a body that no longer works the right way for him. Sometimes I get impatient and angry that he's not more cooperative or functional. Some days I wish he wasn't here, but then I feel guilty for thinking that way. In a weird way, I guess I actually like the 'quiet days' when he barely gets out of bed. It at least lets me keep track of him easily.
I'm running on zero some days, most days really. My house is actually dirty. And yet, when I get 5 minutes or even a solid hour of time to myself, what do I do? I sit here at the computer. Some day this will all work itself out I know, but it's the in-between crap that really just bites the big one.
I listen to heavy breathing mixed in with some random muttering for about 15 hours a day. That's if he's sleeping well. If he's not resting quietly, I hear more muttering.
My favorite part of the day has now become the 'morning wakeup'.
I'm greeted by any one of a zillion possibilities when I ask the same question, "How did you sleep?"
Most times, he will start with, "Just fine, but..." and that's the point where things get interesting.
Here are a few examples:
"I slept great, except for all the kids running around in here." (There were none)
"I slept fine but I'm tired from packing cheese all night." (Uh...ok)
"Awful, that lady kept walking around in here and wouldn't leave." (Wasn't me I swear!)
So you see, things can get kind of interesting.
The other night he got up during the night to use the bathroom. Good deal, I say. Well, unfortunately for my poor kitty, he locked the cat in his room with him. Then reported to me that the cat was scratching at the door all night. Well, yea...
The night before last his overhead light was on in the morning when I went in. He told me he got up during the night needing to use the bathroom, turned it on, then laid down and fell asleep before he could get up again to turn it off.
My thoughts
Sometimes I feel like I'm watching a really bad sitcom. Sometimes I feel so sad for this wonderful man trapped inside a body that no longer works the right way for him. Sometimes I get impatient and angry that he's not more cooperative or functional. Some days I wish he wasn't here, but then I feel guilty for thinking that way. In a weird way, I guess I actually like the 'quiet days' when he barely gets out of bed. It at least lets me keep track of him easily.
I'm running on zero some days, most days really. My house is actually dirty. And yet, when I get 5 minutes or even a solid hour of time to myself, what do I do? I sit here at the computer. Some day this will all work itself out I know, but it's the in-between crap that really just bites the big one.
New Blog...
I decided it was easier to blog at random than to use the silly note system built into Facebook. While I love rambling on in my status messages, they just leave something to be desired.
Saturday, April 18, 2009
The beginning...
My grandfather, we'll just call him Mr. C, is currently 87 years young.
About 6 years ago, my grandmother, his wife of 50+ years, passed away due to complications from multiple health problems. He lived alone after her death, and has steadily declined since.
In 2006 he came down with a series of urinary tract infections and then in early 2007, a double bout with pneumonia. That left him a lot worse. He went through two hospital and rehab stays, and in between stayed with my husband and I to recover. When he was strong enough (March 2007) he returned home.
Although he has been in relatively good health, his chronic conditions are now making life incredibly difficult to manage and he has lost most of that ability. When he fails to manage his health properly, he ends up with acute situations and needs some heavy duty managed care.
He is currently living with us again, this time in South Carolina. It's the longest he's lived away from home and the longest I've cared for him hands on, full time, 24/7.
About 6 years ago, my grandmother, his wife of 50+ years, passed away due to complications from multiple health problems. He lived alone after her death, and has steadily declined since.
In 2006 he came down with a series of urinary tract infections and then in early 2007, a double bout with pneumonia. That left him a lot worse. He went through two hospital and rehab stays, and in between stayed with my husband and I to recover. When he was strong enough (March 2007) he returned home.
Although he has been in relatively good health, his chronic conditions are now making life incredibly difficult to manage and he has lost most of that ability. When he fails to manage his health properly, he ends up with acute situations and needs some heavy duty managed care.
He is currently living with us again, this time in South Carolina. It's the longest he's lived away from home and the longest I've cared for him hands on, full time, 24/7.
Thursday, April 16, 2009
Creative Expressions
The day breaks.
It was already broken, really.
It's been broken for some time.
Coffee will move the sleep from my eyes, although
My eyes seem to see so little sleep.
It should be an easy job.
So much to do.
My beautiful children, getting older.
My beautiful grandfather, getting younger.
I'm too young for this, and you're too old.
Drool, pee, food, dead skin.
Clutter my laundry pile, it grows by the minute.
The children play, the old man sleeps.
Restful yet restless.
Long days of wondering, of watching him.
So much to do.
Dance class, puppy class, dinner to make.
Hither and tither.
Groceries, doctors, pharmacy yet again.
Helping you keep what dignity you still have.
Keeping the boundaries in place for your sake.
Modest to a fault, you are.
Afraid to smother, but needing to be close.
Just in case.
What if.
Will today be the day.
Would it bring relief or sadness.
Maybe both.
More meals, more diapers, more unanswered questions.
If only I could get the invisible crew in his room to help.
Is it better to be unaware of what's happening.
Another day of tender care.
Meds are done and you are tucked in to sleep.
Your visitors will come to entertain you in ways I cannot tonight.
Yes, I will tell them not to touch you.
Yes, the electric blanket is on.
Yes, the heat is on.
I know you are still cold, but it's all I can do.
I love you.
Peace is what I wish you could find when your mind wanders away.
It was already broken, really.
It's been broken for some time.
Coffee will move the sleep from my eyes, although
My eyes seem to see so little sleep.
It should be an easy job.
So much to do.
My beautiful children, getting older.
My beautiful grandfather, getting younger.
I'm too young for this, and you're too old.
Drool, pee, food, dead skin.
Clutter my laundry pile, it grows by the minute.
The children play, the old man sleeps.
Restful yet restless.
Long days of wondering, of watching him.
So much to do.
Dance class, puppy class, dinner to make.
Hither and tither.
Groceries, doctors, pharmacy yet again.
Helping you keep what dignity you still have.
Keeping the boundaries in place for your sake.
Modest to a fault, you are.
Afraid to smother, but needing to be close.
Just in case.
What if.
Will today be the day.
Would it bring relief or sadness.
Maybe both.
More meals, more diapers, more unanswered questions.
If only I could get the invisible crew in his room to help.
Is it better to be unaware of what's happening.
Another day of tender care.
Meds are done and you are tucked in to sleep.
Your visitors will come to entertain you in ways I cannot tonight.
Yes, I will tell them not to touch you.
Yes, the electric blanket is on.
Yes, the heat is on.
I know you are still cold, but it's all I can do.
I love you.
Peace is what I wish you could find when your mind wanders away.
Wednesday, April 15, 2009
Creative Work in Progress...
I love you.
As a child loves her father. Adoring, unfailing love.
As a nurse tends to her ailing patient. Confident in her duty but sad to know that nothing can fix this wound.
As a student loves her teacher and mentor. Learning life through eyes that have seen so much life and now look to the beyond.
As a parent loves their child. Caring, calming, soothing the world’s insults upon you.
I miss you.
The man that taught me how to bait a hook and paddle a canoe. Who taught me that a jeep with no doors or seatbelts was the safest place on earth. My father when I had none. My shelter and my safe harbor unfailingly.
I honor you.
For your service, compassion, selflessness. Putting everyone else in front of you in the line of life’s handouts of good fortune. For giving, if only to give joy to another with nothing asked in return.
There are some hurts that cannot be fixed. Insults which cannot be palliated that are inflicted upon your very soul. I can’t fix this. I can only try to help you understand what’s happening to you. I can hold your hand and help you keep your grip on this life we call reality, if you even want to. I want so badly to see that spark of life in your eyes again, but I’m afraid it’s gone now. Even if it isn’t gone, I’m afraid it will leave you far too soon.
But if you can remember nothing else, remember me. Remember I love you.
As a child loves her father. Adoring, unfailing love.
As a nurse tends to her ailing patient. Confident in her duty but sad to know that nothing can fix this wound.
As a student loves her teacher and mentor. Learning life through eyes that have seen so much life and now look to the beyond.
As a parent loves their child. Caring, calming, soothing the world’s insults upon you.
I miss you.
The man that taught me how to bait a hook and paddle a canoe. Who taught me that a jeep with no doors or seatbelts was the safest place on earth. My father when I had none. My shelter and my safe harbor unfailingly.
I honor you.
For your service, compassion, selflessness. Putting everyone else in front of you in the line of life’s handouts of good fortune. For giving, if only to give joy to another with nothing asked in return.
There are some hurts that cannot be fixed. Insults which cannot be palliated that are inflicted upon your very soul. I can’t fix this. I can only try to help you understand what’s happening to you. I can hold your hand and help you keep your grip on this life we call reality, if you even want to. I want so badly to see that spark of life in your eyes again, but I’m afraid it’s gone now. Even if it isn’t gone, I’m afraid it will leave you far too soon.
But if you can remember nothing else, remember me. Remember I love you.
More Research
This installment will cover the other "suggestive features" of LBD, many if not most of which my grandfather has shown in the past 4-5 weeks.
Other LBD Symptoms
Supportive Features: (These are commonly present and can support an LBD diagnosis when they occur with ‘core’ or ‘suggestive’ features.)
* Repeated falls, fainting, myoclonus (sudden muscle jerks or twitches)
No falls yet, thankfully. I do see muscle twitches quite often. His movements are usually jerky or shaky.
* Hallucinations of sound, touch, smell, taste
Yes, yes, no and no (as far as I know). He has very little sense of smell left though)
* Transient/unexplained unresponsiveness
Sometimes. He either doesn't hear me or can't wake up sometimes.
* Autonomic problems: fainting or dizziness on standing due to low blood pressure; constipation, unexplained sweating or coldness
Weakness upon standing, constipation, extreme constant coldness, to an annoying degree.
* Urinary problems (incontinence), sexual difficulties
Incontinent, wears depends. We thought it was a prostate issue, which means this may date back to his original prostate studies in 2006.
* Delusions (false beliefs), delusional misidentification
Some, but not constant.
* Anger, sadness, depression
Yes, yes, yes.
* Difficulty swallowing, choking, weak voice
Starting to choke/cough on food more often. Asks for things to be cut up most times.
Alzheimer’s-like (cognitive) symptoms:
* Progressive memory loss
* Depression, changes in mood, behavior
* Decreased judgment, loss of initiative
* Disorientation regarding time and place
* Difficulty with language and tasks
Won't even waste time going line by line here. He has many of these, but since he fluctuates wildly he might have a good day or show off for a doctor's visit.
Parkinsonian (motor) symptoms:
* Muscle stiffness and rigidity
* Very slow movements, frozen stance
* Balance difficulties, shuffling gait
* Tremor
* Loss of dexterity
* Small handwriting
* Stooped posture (pronounced leaning, generally to one side or forward)
* Blank facial expression
Detailed in Part 1 of my diary here:
Other possible symptoms:
* Excessive daytime sleepiness Extremely sleepy regardless of previous night's sleep
* Abnormal depth perception, directional sense, object orientation, illusions Not sure
* Restless leg syndrome (RLS) Definitely
Other LBD Symptoms
Supportive Features: (These are commonly present and can support an LBD diagnosis when they occur with ‘core’ or ‘suggestive’ features.)
* Repeated falls, fainting, myoclonus (sudden muscle jerks or twitches)
No falls yet, thankfully. I do see muscle twitches quite often. His movements are usually jerky or shaky.
* Hallucinations of sound, touch, smell, taste
Yes, yes, no and no (as far as I know). He has very little sense of smell left though)
* Transient/unexplained unresponsiveness
Sometimes. He either doesn't hear me or can't wake up sometimes.
* Autonomic problems: fainting or dizziness on standing due to low blood pressure; constipation, unexplained sweating or coldness
Weakness upon standing, constipation, extreme constant coldness, to an annoying degree.
* Urinary problems (incontinence), sexual difficulties
Incontinent, wears depends. We thought it was a prostate issue, which means this may date back to his original prostate studies in 2006.
* Delusions (false beliefs), delusional misidentification
Some, but not constant.
* Anger, sadness, depression
Yes, yes, yes.
* Difficulty swallowing, choking, weak voice
Starting to choke/cough on food more often. Asks for things to be cut up most times.
Alzheimer’s-like (cognitive) symptoms:
* Progressive memory loss
* Depression, changes in mood, behavior
* Decreased judgment, loss of initiative
* Disorientation regarding time and place
* Difficulty with language and tasks
Won't even waste time going line by line here. He has many of these, but since he fluctuates wildly he might have a good day or show off for a doctor's visit.
Parkinsonian (motor) symptoms:
* Muscle stiffness and rigidity
* Very slow movements, frozen stance
* Balance difficulties, shuffling gait
* Tremor
* Loss of dexterity
* Small handwriting
* Stooped posture (pronounced leaning, generally to one side or forward)
* Blank facial expression
Detailed in Part 1 of my diary here:
Other possible symptoms:
* Excessive daytime sleepiness Extremely sleepy regardless of previous night's sleep
* Abnormal depth perception, directional sense, object orientation, illusions Not sure
* Restless leg syndrome (RLS) Definitely
Tuesday, April 14, 2009
There are days...
Today was one of the worst days he's had in a while.
In the past couple of days, he has seemingly forgotten how to dial a phone or operate any of the things in his room. He had a mostly clear morning on Monday, was tired from taking a shower and slept most of the day after it.
He was upset with me Monday night because he thought he was going somewhere with me, and I left without him. He sat with Joe in the living room for almost 2 hours and didn't say a word to him, but was angry when I got home that he didn't know where I was. (Every Monday after dinner I take the dog to training class.)
Today, he didn't know it was April. He didn't remember that he really enjoyed Jeff Dunham's special that was on TV last month. I mean REALLY enjoyed it too. Hadn't heard him laugh like that in a while.
He forgot to put his pajama pants on. He always has an excuse handy though. "I didn't feel like it" or "It was too hot" are common ones. Except he's a horrible liar. He's been cold since he got here, going out in the 70 degree sunny weather with a tshirt, long sleeve shirt or sweatshirt and a hoodie on top. Sometimes even a mid weight coat on top of that. When it's 60+ out. This is definitely not the same guy who took me ice skating on the golf course ponds or hiking in the dead of winter on Turkey Hill.
My husband is a saint. I know he's shown more patience with me than he rightly should, but I'm thankful for him, my rock. Joe I love you and I am going to make this up to you someday for letting me turn our house upside down and inside out for my grandfather.
Thursday will mark 5 weeks of this journey. The longest he stayed here before was 3.5 weeks, over the Christmas/New Years holidays.
He constantly tells people different stories. If we had lunch out and then went for a ride, he might tell someone we didn't do anything and he slept all day. The days run into each other for him, and it's probably my fault because I try not to force him to do anything. Katherine got a splinter in her finger while we were fishing Sunday, but to everyone else he told, she caught the hook in her hand. Apparently we also have x-ray fish that you can see through and you shouldn't eat them. In reality, they are called "Crappy" and it was most definitely NOT see-through. It was ugly though :)
I need to call the neuro's office AGAIN. This will be the third or fourth time in a 5 day period. They say they don't have anything from his primary yet, so they won't even schedule an appointment. The primary's office in MA insists the items were faxed (we thought they might have been mailed) last week.
He's yelling out now. This is going to be a bad night, I can tell already.
I have to get everyone up and ready for the dog's checkup at 9.
I'll be blunt - if I ever get diagnosed with this type of disease, I will kill myself.
I am not sure if he even is concerned that he's a burden anymore. He used to say it all the time. I haven't heard it in at least a week. I hope he just got tired of thinking it.
We are looking at walling in the office downstairs with a makeshift system of tall bookcases from Ikea and a curtain doorway. That way, nothing's permanent and can be used again later on.
I wonder if he has sleep apnea too. He makes some awful noises while he sleeps. I would imagine it's what it would sound like if you were dying in your sleep. I'm also afraid that one of these times it will come to that.
My biggest hope is that some sort of sleep aid and antidepressant can give us 'the old Dada' back for a little while longer.
I'm concerned my sister is not going to be able to handle this new Dada. She hasn't been in touch as much and I think this rapid change is going to be quite a shock. She's never spent a week with him under the same roof when he's been in this state. I have to admit though that a selfish part of me is hoping that she will be able to take care of him if only to see what my life has been like the past 6 years. It's never been quite THIS bad before, but I've been to hell and back with him and it looks like we're on a slippery slope back down right now.
It seems silly to even pray for anything. I feel like if nothing else I need to talk to my grandmother and ask her to bring him peace. He is so troubled now. Just peace, please? However it needs to come. I know she is somewhere watching over him and me and guiding us, but it's still a lonely road some days.
My friend Julie shared a poem with me the other day, and since I've been waxing poetic lately:
I had two mothers...
Two mothers I claim.
Two different people ..
Yet with the same name.
Two separate women ...
Diverse by design.
But I loved them both
Because they were both mine.
The first was the mother
who carried me here
Gave birth and nurtured and
launched my career.
She was the one whose features I bear.
Complete with the facial expression I wear.
She gave me some music which follows me yet.
Along with examples in the lafe that she set.
Then as I got older she some younger grew.
And we'd laugh as just mothers and daughter do.
As quickly she changed and turned to the other.
A stranger who dressed in the clothes of my mother.
Oh she looked the same at least at arms length
But she was the child now and I was her strength.
We'd come full circle we women three.
My mother the first, the second and me.
And if my own children should come to a day
When a new mother comes and the old goes away
I'd ask of them nothing that I didn't do
Love both of your mothers as both have loved you.
by Anonymous
In the past couple of days, he has seemingly forgotten how to dial a phone or operate any of the things in his room. He had a mostly clear morning on Monday, was tired from taking a shower and slept most of the day after it.
He was upset with me Monday night because he thought he was going somewhere with me, and I left without him. He sat with Joe in the living room for almost 2 hours and didn't say a word to him, but was angry when I got home that he didn't know where I was. (Every Monday after dinner I take the dog to training class.)
Today, he didn't know it was April. He didn't remember that he really enjoyed Jeff Dunham's special that was on TV last month. I mean REALLY enjoyed it too. Hadn't heard him laugh like that in a while.
He forgot to put his pajama pants on. He always has an excuse handy though. "I didn't feel like it" or "It was too hot" are common ones. Except he's a horrible liar. He's been cold since he got here, going out in the 70 degree sunny weather with a tshirt, long sleeve shirt or sweatshirt and a hoodie on top. Sometimes even a mid weight coat on top of that. When it's 60+ out. This is definitely not the same guy who took me ice skating on the golf course ponds or hiking in the dead of winter on Turkey Hill.
My husband is a saint. I know he's shown more patience with me than he rightly should, but I'm thankful for him, my rock. Joe I love you and I am going to make this up to you someday for letting me turn our house upside down and inside out for my grandfather.
Thursday will mark 5 weeks of this journey. The longest he stayed here before was 3.5 weeks, over the Christmas/New Years holidays.
He constantly tells people different stories. If we had lunch out and then went for a ride, he might tell someone we didn't do anything and he slept all day. The days run into each other for him, and it's probably my fault because I try not to force him to do anything. Katherine got a splinter in her finger while we were fishing Sunday, but to everyone else he told, she caught the hook in her hand. Apparently we also have x-ray fish that you can see through and you shouldn't eat them. In reality, they are called "Crappy" and it was most definitely NOT see-through. It was ugly though :)
I need to call the neuro's office AGAIN. This will be the third or fourth time in a 5 day period. They say they don't have anything from his primary yet, so they won't even schedule an appointment. The primary's office in MA insists the items were faxed (we thought they might have been mailed) last week.
He's yelling out now. This is going to be a bad night, I can tell already.
I have to get everyone up and ready for the dog's checkup at 9.
I'll be blunt - if I ever get diagnosed with this type of disease, I will kill myself.
I am not sure if he even is concerned that he's a burden anymore. He used to say it all the time. I haven't heard it in at least a week. I hope he just got tired of thinking it.
We are looking at walling in the office downstairs with a makeshift system of tall bookcases from Ikea and a curtain doorway. That way, nothing's permanent and can be used again later on.
I wonder if he has sleep apnea too. He makes some awful noises while he sleeps. I would imagine it's what it would sound like if you were dying in your sleep. I'm also afraid that one of these times it will come to that.
My biggest hope is that some sort of sleep aid and antidepressant can give us 'the old Dada' back for a little while longer.
I'm concerned my sister is not going to be able to handle this new Dada. She hasn't been in touch as much and I think this rapid change is going to be quite a shock. She's never spent a week with him under the same roof when he's been in this state. I have to admit though that a selfish part of me is hoping that she will be able to take care of him if only to see what my life has been like the past 6 years. It's never been quite THIS bad before, but I've been to hell and back with him and it looks like we're on a slippery slope back down right now.
It seems silly to even pray for anything. I feel like if nothing else I need to talk to my grandmother and ask her to bring him peace. He is so troubled now. Just peace, please? However it needs to come. I know she is somewhere watching over him and me and guiding us, but it's still a lonely road some days.
My friend Julie shared a poem with me the other day, and since I've been waxing poetic lately:
I had two mothers...
Two mothers I claim.
Two different people ..
Yet with the same name.
Two separate women ...
Diverse by design.
But I loved them both
Because they were both mine.
The first was the mother
who carried me here
Gave birth and nurtured and
launched my career.
She was the one whose features I bear.
Complete with the facial expression I wear.
She gave me some music which follows me yet.
Along with examples in the lafe that she set.
Then as I got older she some younger grew.
And we'd laugh as just mothers and daughter do.
As quickly she changed and turned to the other.
A stranger who dressed in the clothes of my mother.
Oh she looked the same at least at arms length
But she was the child now and I was her strength.
We'd come full circle we women three.
My mother the first, the second and me.
And if my own children should come to a day
When a new mother comes and the old goes away
I'd ask of them nothing that I didn't do
Love both of your mothers as both have loved you.
by Anonymous
Monday, April 13, 2009
My research project.
I wish I could be earning college credits for all this!
From my research on LBD (Lewy's Body Dementia, or Dementia with Lewy's Bodies) I have seen this very comprehensive checklist of Core and other suggestive features of this disease. Now, I'm not a brain surgeon or neurologist, but since so many things have already been ruled out or don't seem to fit, I decided to look into the rest of what's out there, and see what might be missed.
I would like to thank Estelle Getty (Golden Girls fame), without whom I might have never heard of this disease.
Dementia: a progressive cognitive decline that features executive functioning deficits, like the inability to plan or perform abstract or analytical thinking.
Fluctuating cognition with clear variations in attention, alertness and wakefulness. This fluctuation may make it difficult to accurately evaluate and test the person on a single visit.
To say yes to this one is an understatement. We are at all but the falling out of bed part. My grandfather thinks these dreams are sometimes frightening, but mostly he finds them entertaining. I however, do not. I am afraid he will have one that is a bit TOO vivid and he will wander. We're not there yet, but I wonder how long until that happens.
Severe sensitivity to certain neuroleptics (medications used to treat psychiatric symptoms).
These two are unknown at this point. He did have haldol at one point when he was hospitalized for pneumonia and was completely out of his tree for about a week. We all attributed it to his having an infection, but looking back, it may have been a warning sign. He has also had other medications while in the hospital to calm/sedate him, and I wonder if any of those caused the mental issues we had back then. I'm hoping the neurologist we are going to see has some answers for us as far as brain function scans.
Basically, a "Probable" diagnosis can be safely made with the following:
- Dementia and two core features (check and check x2)
or
- Dementia, one core feature, and one or more suggestive features.
Since my grandfather has dementia (and I do not think ANY doctor would argue that) and I believe at least 4 out of 6 "Core" features I'm guessing this is the right path to be looking down.
I'll be writing more later, but I need to take advantage of sleep!
Information extracted from the Lewy Body Dementia Society (www.lewybody.org) and Lewy Body Dementia Association (www.lbda.org)
From my research on LBD (Lewy's Body Dementia, or Dementia with Lewy's Bodies) I have seen this very comprehensive checklist of Core and other suggestive features of this disease. Now, I'm not a brain surgeon or neurologist, but since so many things have already been ruled out or don't seem to fit, I decided to look into the rest of what's out there, and see what might be missed.
I would like to thank Estelle Getty (Golden Girls fame), without whom I might have never heard of this disease.
Central Feature:
Dementia: a progressive cognitive decline that features executive functioning deficits, like the inability to plan or perform abstract or analytical thinking.
My grandfather most definitely has this now. He has lost the ability to keep track of money, objects, and even seems to have trouble figuring out how to do things like take his insulin or test his blood sugar.
Core Features of LBD:
Fluctuating cognition with clear variations in attention, alertness and wakefulness. This fluctuation may make it difficult to accurately evaluate and test the person on a single visit.
My grandfather shows this variation in cognition on a daily basis. He often substitutes a physical characteristic for someone's name. Some days he never leaves his bed. Other days he's quite alert and full of energy. It follows no clear pattern and is inherently frustrating to both him and myself.
Recurrent visual hallucinations that are typically well formed and detailed. These are usually present early in the course of the illness.
One of the more 'interesting' aspects of this disorder. My grandfather can clearly tell me what he was 'dreaming' about, who he thought was doing what, etc... He has also had a couple of violent episodes where his thrashing about has broken furniture, knocked over a chair, etc. He thought he was fighting a tiger, he was really kicking the heck out of my basket drawers. That incident really frightened me, so I made sure to keep the video baby monitors on at all times.
Parkinsonism usually occurs at the same time or after the onset of dementia in LBD patients, and precedes the other symptoms by several years in Parkinson’s disease dementia patients.
I have seen MANY of the Parkinson's symptoms appearing since I started caring for him about 6 years ago. When he was recovering from pneumonia he had overcome many of the deficits that illness caused, but never fully regained his strength, dexterity, or balance.
- Muscle stiffness and rigidity His arms and legs, and hands cannot be moved easily because his muscles are held so tensely all the time, and he cannot control it.
- Very slow movements, frozen stance He has trouble starting to move, like he is frozen in place when he starts to walk, and rising from a chair or bed is almost like moving stones. It often takes him hours to accomplish simple tasks like washing up and dressing, shaving, or brushing his teeth.
- Balance difficulties, shuffling gait He barely lifts his feet from the floor but he can if asked to march in place. He is quite good at 'showboating' and will impress the heck out of anyone who challenges his strength, balance or endurance, but minutes later is almost incapacitated from the effort.
- Tremor When asked to stand/hold still, he has some shakiness, loss of balance issues. He has hand and foot tremors and uncontrollable foot/knee/ankle movements.
- Loss of dexterity He has trouble zipping/buttoning shirts/clothing
- Small handwriting His printing and signature are about 1/3 the size of normal and he cannot open his grip or relax his hand to make it any larger.
- Stooped posture (pronounced leaning, generally to one side or forward) He has an almost dangerous forward lean when he walks or stands in one place.
- Blank facial expression My grandfather almost never has an expression lately. Occasionally something will spark his interest and I will see a glimmer in his eyes. Most of the time though, he just stares as if he was watching a documentary on the History channel (which sometimes he actually IS doing).
REM sleep behavior disorder (RBD)
includes vivid dreaming, talking in sleep, purposeful and sometimes violent movements, falling out of bed, and can lead to injuries. Sometimes only the patient’s bed partner is aware of these symptoms. RBD often precedes cognitive and other LBD symptoms by many years.To say yes to this one is an understatement. We are at all but the falling out of bed part. My grandfather thinks these dreams are sometimes frightening, but mostly he finds them entertaining. I however, do not. I am afraid he will have one that is a bit TOO vivid and he will wander. We're not there yet, but I wonder how long until that happens.
Severe sensitivity to certain neuroleptics (medications used to treat psychiatric symptoms).
Abnormal result on SPECT or PET scans of brain function, which are often only performed at specialized clinics.
These two are unknown at this point. He did have haldol at one point when he was hospitalized for pneumonia and was completely out of his tree for about a week. We all attributed it to his having an infection, but looking back, it may have been a warning sign. He has also had other medications while in the hospital to calm/sedate him, and I wonder if any of those caused the mental issues we had back then. I'm hoping the neurologist we are going to see has some answers for us as far as brain function scans.
Basically, a "Probable" diagnosis can be safely made with the following:
- Dementia and two core features (check and check x2)
or
- Dementia, one core feature, and one or more suggestive features.
Since my grandfather has dementia (and I do not think ANY doctor would argue that) and I believe at least 4 out of 6 "Core" features I'm guessing this is the right path to be looking down.
I'll be writing more later, but I need to take advantage of sleep!
Information extracted from the Lewy Body Dementia Society (www.lewybody.org) and Lewy Body Dementia Association (www.lbda.org)
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