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.
Monday, April 27, 2009
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.
Subscribe to:
Posts (Atom)