Last night didn't get much better for me or Joe. I picked him up from dialysis and decided that since he seemed to be doing fine, the weather was bearable and I had the ambition, we would go grocery shopping. We stopped by to pick up B.J. the Dog first for a little fresh air ride.
We made it home shortly after 7 p.m. I carried in all the groceries, got Joe's dinner together, washed a couple of rugs that I think B.J. The dog had peeded on, vacuumed the floor, put the new waterproof mattress cover on the bed along with clean sheets and kept trying to eat my dinner.
After I made the bed, I called Joe several times and he didn't come. Finally, I went to check on him and that's when I discovered he'd fallen out of his chair in the living room. I finally got him up and sitting on the side of the ottoman where he stayed for the next 20 minutes. He had such a blank look on his face, was not communicating in any way and wouldn't move. There was NO reaction from him at all even with me yelling constantly. I finally did get him up and helped him walk to the bedroom to tuck him into bed for the night.
About 12:15 p.m., I
Joe wound up in the ER and then in ICU with hydrocephalus for a week. He had totally lost touch with reality and kept falling.
Thursday, November 3, 2011
Wednesday, November 2, 2011
A Change In Routine HAS To Take Place
It's amazing how important numbers are in my life when they pertain to Joe. Every morning it's check the blood sugar - too high means it's a booster of Humalog on a sliding scale that's posted on the refrigerator. You would think that after all this time I'd have it memorized, but I don't. So instead of pictures or additional refrigerator magnets, I have a "sliding scale" chart.
Then there is the amount of pills given throughout the course of the day in four separate intervals. Those are sorted out by me usually one afternoon or evening for the next upcoming four weeks. I put out Joe's breakfast meds in a little cup and then put the remaining pills away. If I leave them out, he has a tendency to think it's time to take the next series of pills not realizing it's not time for them. Even that is going to have to change since I discovered a half chewed pill laying underneath the dining room table. I'd found a similar situation in the kitchen the day before. Since B.J. the Dog is now in the house I'm quite sure he's the one doing the pill chewing and discovering it's not to his liking. So, it looks like I'll be placing the pills in Joe's mouth for now one if we don't want Cujo the Dog living with us after an adverse reaction to Joe's meds.
Joe got lost in the bedroom again last night. I only discovered that when I went in to get dressed. It looked like a tornado had hit the room. Items pushed off pieces of furniture; the artificial tree lying on its side; the trashcan overturned. But Joe was in the bed so he eventually found the bed. I still have to wrap my mind around why it's so hard for him to find the bed. All he has to do is walk straight into the bedroom from the doorway about four steps, stick out his left arm and there's the bed.
----------------------------------------------
This morning was so hectic. It was one of those mornings when it was so many little things that evolved into one big mess.
I got up before Joe - 6:30 this morning since I had an 8:00 a.m. meeting that required my attendance. I'd already found his clothing for the day and laid it on the dining room table. I'd already packed his dialysis bag with his juice and a snack. I'd already found him a woolen cap for his head and hung his coat on the chair. Now it was time for me to get ready.I was enjoying my nice warm shower to the very end until Joe walked into the bathroom, couldn't shut the door because of clothing he'd taken off and there went all my warmth. Then I begged for a moment to at least let me get on my underwear before having to assist him with which way his "diaper" went. (I'd already gone and opened up a new package, taken a Sharpie and marked the back of the Depends with a prominent heavy spot to help indicate the back of it). That didn't work for Joe this morning. That's when I discovered the three places on the mattress where his diaper had leaked sometime this morning. Thank goodness there was a pad under the largest spot. Sheets were stripped from the bed - poured some powder on one spot and would deal with it all when I come home later on tonight. Then it was on to helping slide Joe's diaper on and still needing to get ready.
I finally succeeded in getting dressed, running outside to clear the snow and ice from the car, throwing salt on the sidewalk, but still had to take blood sugars and make sure he was ready to go. That's when I noticed the blue fingernails and lips. Oh my gosh - where was his oxygen tubing?! How long had he been off that? And, oh no, I'd forgotten about his portable tank! With time running out, I had to replace tanks. First time doing it with this one and it wasn't easy when you are in a hurry. Aw crap, the first tank didn't show any oxygen. Now it was on to the second tank and trying to line up those little nipples to the regulator. Heck where was my Dollar Tree reading glasses - gotta find them. I finally managed to get it fastened together and give instructions to Joe. During this time, I'd watch Joe try to figure out how to put his woolen beanie on his head. Yes, I snatched it from his hands and put it on his head. Then he was trying to turn his coat inside out and yes, I took that away too and hung it on the dining room chair with instructions to not bother for the next hour.
I finally got my shoes on and left. I didn't leave feeling good about leaving Joe this morning. There were too many variables that could go wrong, i.e. not putting his coat on; trying to maneuver his oxygen tank (if he remembered to take it at all) and his dialysis bag; walking down the snow/ice covered sidewalk to the bus; did he remember to let B.J. the Dog out one last night; did he shut all the doors that needed shutting; did he leave his hat on his head and put on his gloves, etc., etc., etc. It was then that I decided he'd be leaving with me in the mornings from now on as long as he's got this oxygen thing going on and if the weather is crappy.
Yes, I finally made it to work - late.
---------------------------------------------
I got a phone call from dialysis. Joe had apparently had a major accident and I needed to have him cleaned up. I was told I could pick him up, take him home for a shower and bring him back. When I arrived, he was hooked up to oxygen, backside of his pants were very wet and he wasn't acting quite lucid. He had worn no coat and had not brought his portable oxygen with him when leaving the house. His reason...they were locked inside the house. Even then, that shouldn't have been a problem since he knows (under "normal" circumstances that there is a spare key in the mailbox which he has used on numerous occasions. Then I wondered why they would have been locked in the house. About that time, we arrived at the house and I figured it out and he confirmed it...Joe's wet bottom came from the fact that he had come outside and sat in the snow/ice covered patio chair to wait for the bus. There is no telling how long he'd sat outside in the freezing weather without his coat and gloves waiting on the bus and with no oxygen and an ever increasingly wet bottom.
This confirms to me that he can't be left alone any longer to wait for the bus.
Then there is the amount of pills given throughout the course of the day in four separate intervals. Those are sorted out by me usually one afternoon or evening for the next upcoming four weeks. I put out Joe's breakfast meds in a little cup and then put the remaining pills away. If I leave them out, he has a tendency to think it's time to take the next series of pills not realizing it's not time for them. Even that is going to have to change since I discovered a half chewed pill laying underneath the dining room table. I'd found a similar situation in the kitchen the day before. Since B.J. the Dog is now in the house I'm quite sure he's the one doing the pill chewing and discovering it's not to his liking. So, it looks like I'll be placing the pills in Joe's mouth for now one if we don't want Cujo the Dog living with us after an adverse reaction to Joe's meds.
Joe got lost in the bedroom again last night. I only discovered that when I went in to get dressed. It looked like a tornado had hit the room. Items pushed off pieces of furniture; the artificial tree lying on its side; the trashcan overturned. But Joe was in the bed so he eventually found the bed. I still have to wrap my mind around why it's so hard for him to find the bed. All he has to do is walk straight into the bedroom from the doorway about four steps, stick out his left arm and there's the bed.
----------------------------------------------
This morning was so hectic. It was one of those mornings when it was so many little things that evolved into one big mess.
I got up before Joe - 6:30 this morning since I had an 8:00 a.m. meeting that required my attendance. I'd already found his clothing for the day and laid it on the dining room table. I'd already packed his dialysis bag with his juice and a snack. I'd already found him a woolen cap for his head and hung his coat on the chair. Now it was time for me to get ready.I was enjoying my nice warm shower to the very end until Joe walked into the bathroom, couldn't shut the door because of clothing he'd taken off and there went all my warmth. Then I begged for a moment to at least let me get on my underwear before having to assist him with which way his "diaper" went. (I'd already gone and opened up a new package, taken a Sharpie and marked the back of the Depends with a prominent heavy spot to help indicate the back of it). That didn't work for Joe this morning. That's when I discovered the three places on the mattress where his diaper had leaked sometime this morning. Thank goodness there was a pad under the largest spot. Sheets were stripped from the bed - poured some powder on one spot and would deal with it all when I come home later on tonight. Then it was on to helping slide Joe's diaper on and still needing to get ready.
I finally succeeded in getting dressed, running outside to clear the snow and ice from the car, throwing salt on the sidewalk, but still had to take blood sugars and make sure he was ready to go. That's when I noticed the blue fingernails and lips. Oh my gosh - where was his oxygen tubing?! How long had he been off that? And, oh no, I'd forgotten about his portable tank! With time running out, I had to replace tanks. First time doing it with this one and it wasn't easy when you are in a hurry. Aw crap, the first tank didn't show any oxygen. Now it was on to the second tank and trying to line up those little nipples to the regulator. Heck where was my Dollar Tree reading glasses - gotta find them. I finally managed to get it fastened together and give instructions to Joe. During this time, I'd watch Joe try to figure out how to put his woolen beanie on his head. Yes, I snatched it from his hands and put it on his head. Then he was trying to turn his coat inside out and yes, I took that away too and hung it on the dining room chair with instructions to not bother for the next hour.
I finally got my shoes on and left. I didn't leave feeling good about leaving Joe this morning. There were too many variables that could go wrong, i.e. not putting his coat on; trying to maneuver his oxygen tank (if he remembered to take it at all) and his dialysis bag; walking down the snow/ice covered sidewalk to the bus; did he remember to let B.J. the Dog out one last night; did he shut all the doors that needed shutting; did he leave his hat on his head and put on his gloves, etc., etc., etc. It was then that I decided he'd be leaving with me in the mornings from now on as long as he's got this oxygen thing going on and if the weather is crappy.
Yes, I finally made it to work - late.
---------------------------------------------
I got a phone call from dialysis. Joe had apparently had a major accident and I needed to have him cleaned up. I was told I could pick him up, take him home for a shower and bring him back. When I arrived, he was hooked up to oxygen, backside of his pants were very wet and he wasn't acting quite lucid. He had worn no coat and had not brought his portable oxygen with him when leaving the house. His reason...they were locked inside the house. Even then, that shouldn't have been a problem since he knows (under "normal" circumstances that there is a spare key in the mailbox which he has used on numerous occasions. Then I wondered why they would have been locked in the house. About that time, we arrived at the house and I figured it out and he confirmed it...Joe's wet bottom came from the fact that he had come outside and sat in the snow/ice covered patio chair to wait for the bus. There is no telling how long he'd sat outside in the freezing weather without his coat and gloves waiting on the bus and with no oxygen and an ever increasingly wet bottom.
This confirms to me that he can't be left alone any longer to wait for the bus.
Tuesday, November 1, 2011
Take Your Hubby To Work Day
Joe's at work with me today. He's had a rough last few days and it's snowing outside and I didn't want to leave him at home by himself. So, I packed him up along with an oxygen tank, his breakfast and lunch and brought him to work with me. There's something to be said about peace of mind and at least I can get my work done without worrying about him.
I got him an appointment scheduled for this coming Friday to have his high blood sugar and urine output checked out. Even with me guarding the kitchen and administering the correct amount of bedtime insulins, his blood sugar is high in the mornings.
Yesterday was another unusual day. I took Joe to have a chest x-ray done, at the request of Dr. Neff, and nothing was found. I think they were looking for an infection or something pre-bronchitis like. Then I took him to the office with me until time for his Monday dialysis. When we arrived and were waiting for him to be called in, he started having oxygen problems again. His fingernails and lips started turning blue just like they had last Friday at the conclusion of his dialysis session. They took him on back and started him on oxygen. I had had a portable tank he had been using but found out it was only good for about an hour and we'd been gone from home much longer than that.
Joe's having real problems with his urination now. I think he changed into a new diaper at least eight times and he was up and done several times in the bathroom.
I got him an appointment scheduled for this coming Friday to have his high blood sugar and urine output checked out. Even with me guarding the kitchen and administering the correct amount of bedtime insulins, his blood sugar is high in the mornings.
Yesterday was another unusual day. I took Joe to have a chest x-ray done, at the request of Dr. Neff, and nothing was found. I think they were looking for an infection or something pre-bronchitis like. Then I took him to the office with me until time for his Monday dialysis. When we arrived and were waiting for him to be called in, he started having oxygen problems again. His fingernails and lips started turning blue just like they had last Friday at the conclusion of his dialysis session. They took him on back and started him on oxygen. I had had a portable tank he had been using but found out it was only good for about an hour and we'd been gone from home much longer than that.
Joe's having real problems with his urination now. I think he changed into a new diaper at least eight times and he was up and done several times in the bathroom.
Thursday, October 27, 2011
Real Sleep
Last night I finally got some real sleep in my own home - not my own bed, rather on an inflatable queen-sized mattress, but at least in my own home. It was the first in a very long time and I almost feel like a new woman. It was also the first morning in a long time that I didn't wake up to any type of drama. There was no mess to clean up of any shape, form or fashion. Nothing to sweep up, wipe up, soak up, vacuum up, etc. I really think I must have died and gone to heaven today! I know this all sounds so melodramatic, but when you constantly live with the dread of what you might see when you get out of bed, I'll take a dull morning any day. After the two recent episodes of rug cleaning, I had to make a change in how to sleep. So, now I'm sleeping in the living room, on the inflatable mattress, near the kitchen.
Joe only got up one time to use the bathroom and didn't make any attempt to enter into the living room or into the kitchen. I'd like to think that he understands that he won't make much headway if he tried to and that he knows I am serious about keeping him out of the kitchen. He hasn't even tried to cross over the baby gate in the hallway.
This was the second night of sleeping on the floor. Night one didn't go so well as my mattress seemed to slowly lose its air throughout the night and I was finally forced to finish out my sleep on the couch. It's great for naps, but not for full-blown sleep. Then when it was time to wake Joe up, I found that he had soaked his side of the bed. Apparently he'd slept so soundly he hadn't gotten up enough to use the bathroom. Now I'll have to make sure that there is always a pad under the sheet on his side of the bed AND find me one of those waterproof mattress covers. (Note: I did find a waterproof mattress cover. But, after having to wash it multiple times, that's when I started placing a pad on top of the mattress cover as well).
Did I mention that I will be sleeping on the floor until I can have some type of resolution to making the kitchen off limits to Joe - particularly at night? I talked to Leonard Landlord about a door for the kitchen - a half door. He said he'd be getting on to that as soon as possible, but he's leaving for California for several days and I want my bed. So, I called Cordell Home Teacher, gave him the measurements and we'll see what happens and how quickly. Soon, I hope. I miss my bed with the open window and darkness.
Joe only got up one time to use the bathroom and didn't make any attempt to enter into the living room or into the kitchen. I'd like to think that he understands that he won't make much headway if he tried to and that he knows I am serious about keeping him out of the kitchen. He hasn't even tried to cross over the baby gate in the hallway.
This was the second night of sleeping on the floor. Night one didn't go so well as my mattress seemed to slowly lose its air throughout the night and I was finally forced to finish out my sleep on the couch. It's great for naps, but not for full-blown sleep. Then when it was time to wake Joe up, I found that he had soaked his side of the bed. Apparently he'd slept so soundly he hadn't gotten up enough to use the bathroom. Now I'll have to make sure that there is always a pad under the sheet on his side of the bed AND find me one of those waterproof mattress covers. (Note: I did find a waterproof mattress cover. But, after having to wash it multiple times, that's when I started placing a pad on top of the mattress cover as well).
Did I mention that I will be sleeping on the floor until I can have some type of resolution to making the kitchen off limits to Joe - particularly at night? I talked to Leonard Landlord about a door for the kitchen - a half door. He said he'd be getting on to that as soon as possible, but he's leaving for California for several days and I want my bed. So, I called Cordell Home Teacher, gave him the measurements and we'll see what happens and how quickly. Soon, I hope. I miss my bed with the open window and darkness.
Tuesday, October 25, 2011
My Morning Meltdown
Joe didn't sleep in the bed last night at all. I can't even remember if he started out that way or not - I'm so tired these days when my body finally gets into the bed.
I woke up one minute before the alarm shrilled this morning and got up to start my morning routine of getting Joe's meds, his clothing, everything he needed for his upcoming day. I walked into the living room and that's when I saw the spilled mess. Joe had apparently warmed himself up a bowl of chili and attempted to walk to his chair and eat it. Once again he'd spilled it all over the carpet. The difference this time though was that he'd tried to clean it up.
 |
| Joe tried to clean up his mess by pouring undiluted Dawn dish detergent directly on the carpet. |
 |
| I lost it!!! I lost it this time!!! I'd just cleaned up a similar mess a couple of weeks before, but this was worse than that time. I screamed! I yelled! I cried! I told him to get into the bedroom! I got him dressed and ready for dialysis and could hardly wait for the bus to come pick him up. I continued to scream and yell and cry. I had reached my meltdown point. I called a friend of mine who came over and sat at the dining room table while I continued to cry. She wanted to help clean up, but I wouldn't let him. I just needed to gain strength from her sweet spirit and I eventually told her it was okay for her to leave. I was screamed, yelled and cried out. It took me about 7 hours to clean up this mess and that's why I finally lost it. I do realize that Joe does not do this on purpose. I do realize that Joe does not do this to make me scream and yell and cry. I do realize that my sweet Joe is not aware of what he's doing. That's why I love Joe and that's why I will continue to love him. |
Monday, October 24, 2011
Sucking The Life Outta Him
Joe had been doing wonderfully since the bump on his head. He went to physical therapy on both Tuesday and Thursday and had great sessions - his balance was so much better. He still wasn't using his walking cane.
He had an appointment on Tuesday with Dr. Wheeler, the neurologist. After talking to both Joe and I and the doctor doing a series of visual, mental and physical tests this is the results of the visit:
Joe does not have alzheimer's.
Joe may have vascular dementia which nothing can be done to change that. Vascular dementia is one of the most common forms of dementia, ranking only second to Alzheimer’s disease. Vascular dementia is caused by chronic, reduced blood flow to the brain—usually as the result of a stroke or series of strokes. In many cases, the strokes are so small that you may not notice any symptoms. These are known as “silent strokes.” But over time, the damage adds up, leading to memory loss, confusion, and other signs of dementia.
Vascular dementia refers to a subtle, progressive decline in memory and cognitive functioning. It occurs when the blood supply carrying oxygen and nutrients to the brain is interrupted by a blocked or diseased vascular system. If blood supply is blocked for longer than a few seconds, brain cells can die, causing damage to the cortex of the brain—the area associated with learning, memory, and language.
Depending on the person, and the severity of the stroke or strokes, vascular dementia may come on gradually or suddenly. Currently, there is no known cure.
Vascular dementia affects different people in different ways and the speed of the progression varies from person to person. Some symptoms may be similar to those of other types of dementia and usually reflect increasing difficulty to perform everyday activities like eating, dressing, or shopping.
Behavioral and physical symptoms can come on dramatically or very gradually, although it appears that a prolonged period of TIAs—the mini-strokes discussed above—leads to a gradual decline in memory, whereas a bigger stroke can produce profound symptoms immediately. Regardless of the rate of appearance, vascular dementia typically progresses in a stepwise fashion, where lapses in memory and reasoning abilities are followed by periods of stability, only to give way to further decline.
Common mental and emotional signs and symptoms of vascular dementia:
Memory problems; general forgetfulness
Unusual mood changes (e.g. depression, irritability)
Slowed thinking
Hallucinations and delusions
Confusion, which may get worse at night
Personality changes and loss of social skills
Common physical signs and symptoms of vascular dementia
Dizziness
Leg or arm weakness
Tremors
Moving with rapid, shuffling steps
Balance problems
Loss of bladder or bowel control
Common behavioral signs and symptoms of vascular dementia
Slurred speech
Language problems, such as difficulty finding the right words for things
Getting lost in familiar surroundings
Laughing or crying inappropriately
Difficulty planning, organizing, or following instructions
Difficulty doing things that used to come easily (e.g. paying bills or playing a favorite card game)
Reduced ability to function in daily life
Joe has suffered several strokes - dates cannot be pinned down. I think the big pivotal one occurred on 7/25 when I had to take him to the emergency room after the bad day at dialysis. I'm beginning to think he may have had a mini-stroke a week ago in Georgia.
Joe most likely has hydrocephalus which is that he may have flluid in some of his brain chambers. Hydrocephalus, also known as "water in the brain," is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. Hakim's triad of gait instability, urinary incontinence and dementia is a relatively typical manifestation of the distinct entity normal pressure hydrocephalus (NPH).
Symptoms may include headache followed by vomiting, nausea, papilledema (swelling of the optic disk which is part of the optic nerve), blurred or double vision, sunsetting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss.
Symptoms of normal pressure hydrocephalus include, problems with walking, impaired bladder control leading to urinary frequency and/or incontinence, and progressive mental impairment and dementia. An individual with this type of hydrocephalus may have a general slowing of movements or may complain that his or her feet feel "stuck." Because some of these symptoms may also be experienced in other disorders such as Alzheimer's disease, Parkinson's disease, and Creutzfeldt-Jakob disease, normal pressure hydrocephalus is often incorrectly diagnosed and never properly treated. Doctors may use a variety of tests, including brain scans (CT and/or MRI), a spinal tap or lumbar catheter, intracranial pressure monitoring, and neuropsychological tests, to help them accurately diagnose normal pressure hydrocephalus and rule out any other conditions
He is having a lumbar puncture (spinal tap) done next week to remove some of the fluid. A lumbar puncture (an LP) is the insertion of a needle into the fluid within the spinal canal. It is termed a "lumbar puncture" because the needle goes into the lumbar portion (the "small") of the back.
After local anesthesia is injected into the small of the back (the lumbar area), a needle is inserted in between the nearby bony building blocks (vertebrae) into the spinal canal. (The needle is usually placed between the 3rd and 4th lumbar vertebrae).
This is to see if fluid can be drained from his brain and/or if it returns. If it returns, a shunt may have to be put in. The lumbar puncture is being done first to see if this may take care of some of the problems he's been experiencing before a final diagnosis can be given.
I am so happy that someone is finally recognizing and naming and testing for what I've seen for the last three months. All of the above is as I understand it.
Things had been going so well until his dialysis session on Friday. When I went to pick him up, he said he had fainted when he got up from his bed and he looked drained and weak. It was as though the "old Joe" was back again - very lethargic and no energy and that continued all weekend long. The kids came to visit so they got to see a small portion of the way Joe has been acting.
He had an appointment on Tuesday with Dr. Wheeler, the neurologist. After talking to both Joe and I and the doctor doing a series of visual, mental and physical tests this is the results of the visit:
Joe does not have alzheimer's.
Joe may have vascular dementia which nothing can be done to change that. Vascular dementia is one of the most common forms of dementia, ranking only second to Alzheimer’s disease. Vascular dementia is caused by chronic, reduced blood flow to the brain—usually as the result of a stroke or series of strokes. In many cases, the strokes are so small that you may not notice any symptoms. These are known as “silent strokes.” But over time, the damage adds up, leading to memory loss, confusion, and other signs of dementia.
Vascular dementia refers to a subtle, progressive decline in memory and cognitive functioning. It occurs when the blood supply carrying oxygen and nutrients to the brain is interrupted by a blocked or diseased vascular system. If blood supply is blocked for longer than a few seconds, brain cells can die, causing damage to the cortex of the brain—the area associated with learning, memory, and language.
Depending on the person, and the severity of the stroke or strokes, vascular dementia may come on gradually or suddenly. Currently, there is no known cure.
Vascular dementia affects different people in different ways and the speed of the progression varies from person to person. Some symptoms may be similar to those of other types of dementia and usually reflect increasing difficulty to perform everyday activities like eating, dressing, or shopping.
Behavioral and physical symptoms can come on dramatically or very gradually, although it appears that a prolonged period of TIAs—the mini-strokes discussed above—leads to a gradual decline in memory, whereas a bigger stroke can produce profound symptoms immediately. Regardless of the rate of appearance, vascular dementia typically progresses in a stepwise fashion, where lapses in memory and reasoning abilities are followed by periods of stability, only to give way to further decline.
Common mental and emotional signs and symptoms of vascular dementia:
Memory problems; general forgetfulness
Unusual mood changes (e.g. depression, irritability)
Slowed thinking
Hallucinations and delusions
Confusion, which may get worse at night
Personality changes and loss of social skills
Common physical signs and symptoms of vascular dementia
Dizziness
Leg or arm weakness
Tremors
Moving with rapid, shuffling steps
Balance problems
Loss of bladder or bowel control
Common behavioral signs and symptoms of vascular dementia
Slurred speech
Language problems, such as difficulty finding the right words for things
Getting lost in familiar surroundings
Laughing or crying inappropriately
Difficulty planning, organizing, or following instructions
Difficulty doing things that used to come easily (e.g. paying bills or playing a favorite card game)
Reduced ability to function in daily life
Joe has suffered several strokes - dates cannot be pinned down. I think the big pivotal one occurred on 7/25 when I had to take him to the emergency room after the bad day at dialysis. I'm beginning to think he may have had a mini-stroke a week ago in Georgia.
Joe most likely has hydrocephalus which is that he may have flluid in some of his brain chambers. Hydrocephalus, also known as "water in the brain," is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. Hakim's triad of gait instability, urinary incontinence and dementia is a relatively typical manifestation of the distinct entity normal pressure hydrocephalus (NPH).
Symptoms may include headache followed by vomiting, nausea, papilledema (swelling of the optic disk which is part of the optic nerve), blurred or double vision, sunsetting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss.
Symptoms of normal pressure hydrocephalus include, problems with walking, impaired bladder control leading to urinary frequency and/or incontinence, and progressive mental impairment and dementia. An individual with this type of hydrocephalus may have a general slowing of movements or may complain that his or her feet feel "stuck." Because some of these symptoms may also be experienced in other disorders such as Alzheimer's disease, Parkinson's disease, and Creutzfeldt-Jakob disease, normal pressure hydrocephalus is often incorrectly diagnosed and never properly treated. Doctors may use a variety of tests, including brain scans (CT and/or MRI), a spinal tap or lumbar catheter, intracranial pressure monitoring, and neuropsychological tests, to help them accurately diagnose normal pressure hydrocephalus and rule out any other conditions
He is having a lumbar puncture (spinal tap) done next week to remove some of the fluid. A lumbar puncture (an LP) is the insertion of a needle into the fluid within the spinal canal. It is termed a "lumbar puncture" because the needle goes into the lumbar portion (the "small") of the back.
After local anesthesia is injected into the small of the back (the lumbar area), a needle is inserted in between the nearby bony building blocks (vertebrae) into the spinal canal. (The needle is usually placed between the 3rd and 4th lumbar vertebrae).
This is to see if fluid can be drained from his brain and/or if it returns. If it returns, a shunt may have to be put in. The lumbar puncture is being done first to see if this may take care of some of the problems he's been experiencing before a final diagnosis can be given.
I am so happy that someone is finally recognizing and naming and testing for what I've seen for the last three months. All of the above is as I understand it.
Things had been going so well until his dialysis session on Friday. When I went to pick him up, he said he had fainted when he got up from his bed and he looked drained and weak. It was as though the "old Joe" was back again - very lethargic and no energy and that continued all weekend long. The kids came to visit so they got to see a small portion of the way Joe has been acting.
Sunday, October 16, 2011
Who Is This Man?
Joe fell and knocked his head on the dining room table last night. I think the fall and Joe's head bump did something good. For the first time in many, many weeks I had the Joe I love back in my house. He didn't use his walking cane any, was actually walking and even ran across the living room floor once and had his sense of humor back.
A Little Afternoon Snack
Then that night while climbing into the bed, Joe lost his balance and fell to the floor and insisted that he get himself up. He eventually did.
Trip To Georgia
It had been a year since I'd flown home to visit with my family. The trip though turned out to be extremely stressful. Thank goodness I'd make arrangements for Joe to have transportation access, but even that did not take care of all the problems. It was very difficult for me to try and maneuver our luggage and also to try and assist Joe when he had to walk on his on speed. During the course of the trip, Joe did well flying to and from Georgia. However, during our stay he stumbled and fell twice.
The visit was laced with taking him to dialysis and picking him up several hours later. It seemed as though I was always rushing to complete visits with friends and family in order to make sure he was at the right place, at the right time.
The day before we left was the worst one though as he was taken to the emergency room. The evening before I'd tucked him into bed in his room at Ann's home. He said he was cold and was actually shivering and I added an extra blanket on him. About 3:15 a.m. I suddenly woke up and felt very strongly that I needed to get up and check on him. When I entered his room, I found him totally nude. He'd removed his tee shirt and his diaper. He was sweating profusely and his entire body was covered in sweat. He had fallen, face down, across his bed, almost pushing off the mattress and there was evidence of where he'd thrown up. It was as though someone had poured water on him and there was a shadow of wetness on the sheet around his body. I managed to turn him over and he slid to the floor and was totally disoriented and couldn't speak. I ran and woke Ann up and was immediately checking his blood sugar. It was normal, but then I called the EMT's.
He was transported to the emergency room where the ER doctor could find no reason for whatever had occurred and released him a few hours later. The trip home was uneventful and I am so grateful that the medical crisis had not occurred while we were flying nor on the drive home to Wyoming from Denver.
The visit was laced with taking him to dialysis and picking him up several hours later. It seemed as though I was always rushing to complete visits with friends and family in order to make sure he was at the right place, at the right time.
The day before we left was the worst one though as he was taken to the emergency room. The evening before I'd tucked him into bed in his room at Ann's home. He said he was cold and was actually shivering and I added an extra blanket on him. About 3:15 a.m. I suddenly woke up and felt very strongly that I needed to get up and check on him. When I entered his room, I found him totally nude. He'd removed his tee shirt and his diaper. He was sweating profusely and his entire body was covered in sweat. He had fallen, face down, across his bed, almost pushing off the mattress and there was evidence of where he'd thrown up. It was as though someone had poured water on him and there was a shadow of wetness on the sheet around his body. I managed to turn him over and he slid to the floor and was totally disoriented and couldn't speak. I ran and woke Ann up and was immediately checking his blood sugar. It was normal, but then I called the EMT's.
He was transported to the emergency room where the ER doctor could find no reason for whatever had occurred and released him a few hours later. The trip home was uneventful and I am so grateful that the medical crisis had not occurred while we were flying nor on the drive home to Wyoming from Denver.
Tuesday, October 4, 2011
Tomato Soup Morning
I had awakened again to find Joe not in bed. I'd already gotten up around 12:30 a.m. to see where he was and caught him coming out of the bathroom after finishing a shower. Why had he showered, I wanted to know? He said he thought it had been time to do so, he said. I reminded him that he was NOT to do any showering when I was not awake. Did he want to fall again? He assured me he wouldn't do it again and would be to bed shortly. About an hour later, when I woke up again and realized he wasn't in the bed, that's when I discovered why he'd actually taken a shower.
That's when I found what I initially thought blood on the carpet heading from the kitchen to the living room to his chair. My next sight was seeing him passed out asleep on the couch with his arm dangling over the edge. My first thought and reaction was that he'd somehow bled to death and I began screaming his name. He woke up.
After putting him into bed, I went to find out whad had happened. I discovered that Joe had opened up a can of tomato soup with rice and vegetables and also a large can of spaghetti sauce. For some reason he mixed half a can of each into a bowl, threw the other half into the trashcan and apparently was going to eat the soup sitting in his chair in front of the television.
It was on his way to the chair that he spilled the soup.
2 1/2 hrs. later I finally had the carpet cleaned and crawled back into bed about 4:30 to catch some sleep before having to get up for work.
I See The Light
I got up at 4:45 a.m. this morning to use the bathroom. Joe was fast asleep in the bed with me. As I walked to the bathroom, I noticed that all the lights were on in the living room and the kitchen. I don't know why - they weren't that way when I went to bed. As I went to turn them off, I noticed the front door - standing wide opened where anyone could have opened up the screen door and walked right in.
Lost In Walmart
I lost Joe in Walmart today. I had gone in to buy some last minute items for the trip. Joe went to the bathroom and I waited outside until he came out. I then gave him some money to go down to Subway to buy him a drink. We had decided together which bench he should come sit on and wait for me to check out. We had touched the bench, he knew where it was and I thought he totally understand to come to that bench and sit and stay until I came and got him.
When I came to the register to checkout, he wasn't there. I had someone go check into the men's restroom - he wasn't there. I walked down to the Subway - he wasn't there. Then the store paging his name began over and over. I started feeling desparate. Where could he be? Where could he have gone? What had happened to him? Store personnel began looking for him throughout the store. I knew he shouldn't/couldn't have gone out to the car - it was locked. I finally told someone that I was going out to the car and put my purchased items in it and would be right back. The store was on the verge of locking the doors and calling the police. On the way out the store, I found Joe. There sat Joe sitting outside the store - never hearing the page.
When I came to the register to checkout, he wasn't there. I had someone go check into the men's restroom - he wasn't there. I walked down to the Subway - he wasn't there. Then the store paging his name began over and over. I started feeling desparate. Where could he be? Where could he have gone? What had happened to him? Store personnel began looking for him throughout the store. I knew he shouldn't/couldn't have gone out to the car - it was locked. I finally told someone that I was going out to the car and put my purchased items in it and would be right back. The store was on the verge of locking the doors and calling the police. On the way out the store, I found Joe. There sat Joe sitting outside the store - never hearing the page.
Thursday, September 29, 2011
Have The Police Called You?
It was an uneventful morning. Got Joe totally dressed after he'd made it through a morning shower with no unexpected slippage and falling today. The only mishap was when I was pulling his newly pulled on Depend a little too hard and started a horizontal tear across the backside. Ta dah! Another use for duct tape and he had wearable underwear for all day usage.
I left around 8:30 with my usual "stay out of trouble" and a quick prayer in the car. Around 10:30, I received a telephone call from Leonard Landlord asking me "Have the police called you"? And this is the reason why...
Joe's side of the story:
He was apparently sitting outside waiting for the CATC bus to take him to the Senior Citizen Center. According to him, the bus was running very late and never came and got him. And/or a bus arrived but it was a driver he'd never seen before and he wasn't going with her. And, since the bus never came, he decided to go back into the house, undress and climb back into bed.
CATC'S side of the story:
The driver arrived at our home at 9:35 a.m. The driver walked to the front door since Joe wasn't sitting outside where he usually is most of the time. She became quite alarmed when she neared the front door and found the housekey lying just outside the half-opened screen door where Joe's walking cane was half in and out of the door with the front door open. She knocked on the door calling his name repeatedly. (They are not allowed to enter customer homes). After doing this for about 5 minutes, she called her office and reported what she had observed and done. The office called our home number trying to reach Joe. (I heard that recording when I arrived home later in the morning). CATC sent one of their supervisors over to our house and for several minutes they tried to determine where Joe was. Leonard Landlord even came into the house at some point and called for Joe with no response.
The CATC supervisor finally called the police department for them to come do a "well check".
Police Officer's side of the story:
When they arrived at the house, one officer went to the backyard and spoke with Leonard, first to find out who he was, and then entered the home. (At some point someone even went and spoke with our neighbors to see if they knew about Joe). The other officer came into the front door wherein he finally found a dazed Joe walking into the living room in a pair of jean shorts. (Thank goodness he had at least put on some type of clothing). Joe couldn't understand what all the fuss was about. He just knew the bus hadn't come, he didn't feel it was absolutely essential that he go to the center and had gone back to bed. The police officers and everyone, except Leonard Landlord who continued working on the fence until...
My side of the story...
I was at work when Leonard Landlord called and asked "Have the police called you"?
Me: No, why? What's happened?
LL: Apparently Joe didn't catch the bus and they came looking for him. When he didn't answer, they called and the police came and went into the house and found him okay.
Me: Is he at the house now?
LL: No, I think the bus went on and took him to dialysis.
Me: Today's not his dialysis day. He was supposed to go to the Senior Citizen Center. I'll just give them a call. Thanks for the information LL.
I hang up the phone, search for the SCC number and call asking for Joe. They go looking for Joe and he's not anywhere to be found. I call the house. He doesn't answer the phone. I pick up my purse, clock out at work and say I'll be back as soon as I can find my husband.
I drive home where I find Joe tucked into bed like a sleeping angel. He wakes up. I question/grill him about what has happened. He gets mad at me for making a big fuss about nothing. I find items for his lunch (which he was supposed to have eaten at the Center), give some insulin and leave after I have let him live.
Then I went to CATC to find out all the real facts of the morning, then to the Center to alleviate their wonder of what happened to Joe and spoke to the police officer later when I return to the office.
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Thankfully the office of Dr. Wheeler, Neurologist, called and Joe has an appointment after our return from Georgia.
I also spoke with a CNA from Sharon's Health Care today and turned down the offer of her help to come into the home 2 hours a week to do some light housekeeping, meal preparation, etc. I haven't reached the point yet that I want to accept that type of help. I may not get everything done everyday, but I'm still hanging in there.
The biggest concern I had today was this...what am I going to eventually have to do about leaving Joe at home by himself? I only left him alone today for a little over an hour and look what happened. This is the first time this has occurred. How do I know that it won't happen again? I was given some information at the SCC about adult daycare and I will be checking that out as soon as we return from Georgia.
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When I picked him up for balance therapy this afternoon, he was waiting on the sidewalk and using his walking can like a golf club. He was a totally changed person - almost like old Joe. Therapy went very well - he was actually doing the exercises pretty much as Kraig showed him.
He did fall asleep in his chair before 8:00 after eating dinner and stayed there until 10:00 when I gave him his meds and insulin. Blood sugar was in the 500's.
I left around 8:30 with my usual "stay out of trouble" and a quick prayer in the car. Around 10:30, I received a telephone call from Leonard Landlord asking me "Have the police called you"? And this is the reason why...
Joe's side of the story:
He was apparently sitting outside waiting for the CATC bus to take him to the Senior Citizen Center. According to him, the bus was running very late and never came and got him. And/or a bus arrived but it was a driver he'd never seen before and he wasn't going with her. And, since the bus never came, he decided to go back into the house, undress and climb back into bed.
CATC'S side of the story:
The driver arrived at our home at 9:35 a.m. The driver walked to the front door since Joe wasn't sitting outside where he usually is most of the time. She became quite alarmed when she neared the front door and found the housekey lying just outside the half-opened screen door where Joe's walking cane was half in and out of the door with the front door open. She knocked on the door calling his name repeatedly. (They are not allowed to enter customer homes). After doing this for about 5 minutes, she called her office and reported what she had observed and done. The office called our home number trying to reach Joe. (I heard that recording when I arrived home later in the morning). CATC sent one of their supervisors over to our house and for several minutes they tried to determine where Joe was. Leonard Landlord even came into the house at some point and called for Joe with no response.
The CATC supervisor finally called the police department for them to come do a "well check".
Police Officer's side of the story:
When they arrived at the house, one officer went to the backyard and spoke with Leonard, first to find out who he was, and then entered the home. (At some point someone even went and spoke with our neighbors to see if they knew about Joe). The other officer came into the front door wherein he finally found a dazed Joe walking into the living room in a pair of jean shorts. (Thank goodness he had at least put on some type of clothing). Joe couldn't understand what all the fuss was about. He just knew the bus hadn't come, he didn't feel it was absolutely essential that he go to the center and had gone back to bed. The police officers and everyone, except Leonard Landlord who continued working on the fence until...
My side of the story...
I was at work when Leonard Landlord called and asked "Have the police called you"?
Me: No, why? What's happened?
LL: Apparently Joe didn't catch the bus and they came looking for him. When he didn't answer, they called and the police came and went into the house and found him okay.
Me: Is he at the house now?
LL: No, I think the bus went on and took him to dialysis.
Me: Today's not his dialysis day. He was supposed to go to the Senior Citizen Center. I'll just give them a call. Thanks for the information LL.
I hang up the phone, search for the SCC number and call asking for Joe. They go looking for Joe and he's not anywhere to be found. I call the house. He doesn't answer the phone. I pick up my purse, clock out at work and say I'll be back as soon as I can find my husband.
I drive home where I find Joe tucked into bed like a sleeping angel. He wakes up. I question/grill him about what has happened. He gets mad at me for making a big fuss about nothing. I find items for his lunch (which he was supposed to have eaten at the Center), give some insulin and leave after I have let him live.
Then I went to CATC to find out all the real facts of the morning, then to the Center to alleviate their wonder of what happened to Joe and spoke to the police officer later when I return to the office.
-------------------------------------------------------------
Thankfully the office of Dr. Wheeler, Neurologist, called and Joe has an appointment after our return from Georgia.
I also spoke with a CNA from Sharon's Health Care today and turned down the offer of her help to come into the home 2 hours a week to do some light housekeeping, meal preparation, etc. I haven't reached the point yet that I want to accept that type of help. I may not get everything done everyday, but I'm still hanging in there.
The biggest concern I had today was this...what am I going to eventually have to do about leaving Joe at home by himself? I only left him alone today for a little over an hour and look what happened. This is the first time this has occurred. How do I know that it won't happen again? I was given some information at the SCC about adult daycare and I will be checking that out as soon as we return from Georgia.
-------------------------------------------------------------
When I picked him up for balance therapy this afternoon, he was waiting on the sidewalk and using his walking can like a golf club. He was a totally changed person - almost like old Joe. Therapy went very well - he was actually doing the exercises pretty much as Kraig showed him.
He did fall asleep in his chair before 8:00 after eating dinner and stayed there until 10:00 when I gave him his meds and insulin. Blood sugar was in the 500's.
Wednesday, September 28, 2011
911 - This is a non-emergency. No lights or sirens, please!
My morning began with hearing Joe call me from somewhere outside the bedroom. I was having my best night's sleep in a long time. "Carol. Carol. Carol".
There he was in the bathtub. According to him, he WAS outside the tub drying off when he lost his balance and fell backwards back into the bathtub. Did you know:
He didn't appear to be hurt - only totally unable to get out of the tub. After a great deal of struggling, we did manage to have him "slither" on the side of the tub, but then he was stuck on the bathroom rug and couldn't get up. I no longer was able to help so that's when I threw on a house dress and called 911. I told the dispatcher I needed help, but that it was a non-emergency and begged for no lights or sirens. They granted my wish. Six burly, hunky dudes showed up. There I was standing in my house dress and morning bed head hair going off in a million directions. But in a matter of moments, naked Joe was standing tall and the burly dudes all disappeared.
I did call the dialysis office to let them know to be on the lookout for any strange behaviour, but all went well the rest of the day.
There he was in the bathtub. According to him, he WAS outside the tub drying off when he lost his balance and fell backwards back into the bathtub. Did you know:
- Each year, 350 people drown in their bathtubs. You are 151 times more likely to be killed by your bathtub than you are by a pit bull and/or;
- Seven hundred ten persons drowned in bathtubs in 1979 and 1980 and/or;
- Of the 24000 accidental deaths of people over the age of 65 every year, many ... in the bathroom is slipping and falling when entering and exiting the bathtub. Joe is now 66 years old.
I did call the dialysis office to let them know to be on the lookout for any strange behaviour, but all went well the rest of the day.
Monday, September 26, 2011
Joe was up and down all night again. He went to bed about 10:00 p.m with his meds and insulin given. The Lunesta is not working! I put his bi-pap on, but that didn't stay on long. One time when he got up he even got lost in the bedroom again one time last night. When he gets lost in the bedroom, I've found him standing in the closest facing the wall, or he keeps bumping into the dressers like some childs toy or he's trying to find his way out of the room and can't find the door. I had put the baby gates up in the hall once again, but they had to come down because he got extremely upset that he couldn't get into the living room.
He's now gotten to the point that he wears Depends all the time. The bad part is that he's having problems getting to the bathroom quick enough and so he goes through 4-5 every night. Part of me is wondering if he's just using the Depends as a way of not going to the bathroom?
When I got up at 7:00 a.m., he'd already fed the dogs. What time I wonder?
I had laid out his clothes as usual this morning and he managed to dress himself until he came to be about his belt. He said he couldn't fasten it. The reason...he has started putting his belt in the first loop over his right hip. Therefore, by the time he got back around to it, the belt would have to have been fastened over his right hip. I had to take the belt out and start looping it the right way.
Dialysis was a bad session today. When I went to pick him up he was sitting in a wheelchair in the lobby. He said he was strong enough to walk to the car. He did, but only by hanging on very tightly to me and almost falling a couple of times. It was the same way when we got home. It took several minutes to get him from the car into the house. I left him in his chair when I returned to work hoping he would stay there and stay out of trouble.
It's now 10:15 and he's in bed for the second time this evening since 8:00.
He's now gotten to the point that he wears Depends all the time. The bad part is that he's having problems getting to the bathroom quick enough and so he goes through 4-5 every night. Part of me is wondering if he's just using the Depends as a way of not going to the bathroom?
When I got up at 7:00 a.m., he'd already fed the dogs. What time I wonder?
I had laid out his clothes as usual this morning and he managed to dress himself until he came to be about his belt. He said he couldn't fasten it. The reason...he has started putting his belt in the first loop over his right hip. Therefore, by the time he got back around to it, the belt would have to have been fastened over his right hip. I had to take the belt out and start looping it the right way.
Dialysis was a bad session today. When I went to pick him up he was sitting in a wheelchair in the lobby. He said he was strong enough to walk to the car. He did, but only by hanging on very tightly to me and almost falling a couple of times. It was the same way when we got home. It took several minutes to get him from the car into the house. I left him in his chair when I returned to work hoping he would stay there and stay out of trouble.
It's now 10:15 and he's in bed for the second time this evening since 8:00.
Sunday, September 25, 2011
Sunday...My Day Of Rest?
It's now very early Sunday morning and I haven't gone to bed. I've been enjoying the quiet and catching up on a "chick flick" while Joe is in bed snoring and asleep.
I made him stay awake for the remaining two hours before he went to sleep in hopes that he will actually sleep all night which means I might.
His blood sugar was in the 500+ range tonight. I believe part of the reason is that he's been slipping sips of the juice I send with him to dialysis - the kind that is not sugar free. I sometimes think he's trying to kill himself and I'm the one that will have to pick up all the pieces when he's done so.
I'm trying something different tonight and I've warned him about this one thing...I will be putting up the baby gates just past the bathroom to keep him from wandering into the kitchen and the living room. This will allow him access to the bathroom and the office if he wants to watch TV or get a drink of water.
I've also hidden the dog bowls so that he won't be able to find them until a respectable time in the morning. Maybe the dogs will enjoy a good night sleep since they always come running to the back door when the kitchen light comes on.
So, I'm off to bed for hopefully some good rest for me and a peaceful rejuvenating sleep for Joe.
I made him stay awake for the remaining two hours before he went to sleep in hopes that he will actually sleep all night which means I might.
His blood sugar was in the 500+ range tonight. I believe part of the reason is that he's been slipping sips of the juice I send with him to dialysis - the kind that is not sugar free. I sometimes think he's trying to kill himself and I'm the one that will have to pick up all the pieces when he's done so.
I'm trying something different tonight and I've warned him about this one thing...I will be putting up the baby gates just past the bathroom to keep him from wandering into the kitchen and the living room. This will allow him access to the bathroom and the office if he wants to watch TV or get a drink of water.
I've also hidden the dog bowls so that he won't be able to find them until a respectable time in the morning. Maybe the dogs will enjoy a good night sleep since they always come running to the back door when the kitchen light comes on.
So, I'm off to bed for hopefully some good rest for me and a peaceful rejuvenating sleep for Joe.
Saturday, September 24, 2011
I Just Want Some Sleep
It was Friday night and I was in bed by 10:30 p.m. I'd set my alarm clock to get up at 6:30 a.m. so we could go off on a "daycation". This is how the night went:
12:30 - Joe wakes me up getting out of bed. I had to turn on the light and help him get up and then fell back asleep. I NEED SLEEP!
2:30 - I wake up because Joe's not in the bed and I go check on him. He's in the kitchen fixing the dogs food bowls! I managed to get him back in bed. Then I decided to take his blood sugar to see how it's running - 467 so I give him some insulin and tuck him into bed. I told him to stay in bed and if I don't get sleep we are not going on a daycation. I STILL NEED SLEEP!
4:30 - Joe wakes me up when he turns on the light to ask me if he'd taken his bedtime meds and insulin (the ones given to him at 10:00 p.m. some 6 1/2 hours earlier. NOW I'M REALLY NEEDING SLEEP FOR HEALTH AND SANITY. The alarm clock is turned off at this time.
I am unaware of anything else that happened after that, but I do realize the he has finally decided to stay in the bed. I wake up sometime to go to the bathroom, but climb back into bed where I roll over and go back to sleep until almost 9:00 a.m. He sleeps for a couple more hours.
His blood sugar upon arising is 184.
Some time during all this roaming around, he has managed to wash the dishes and break my large crockpot.
12:30 - Joe wakes me up getting out of bed. I had to turn on the light and help him get up and then fell back asleep. I NEED SLEEP!
2:30 - I wake up because Joe's not in the bed and I go check on him. He's in the kitchen fixing the dogs food bowls! I managed to get him back in bed. Then I decided to take his blood sugar to see how it's running - 467 so I give him some insulin and tuck him into bed. I told him to stay in bed and if I don't get sleep we are not going on a daycation. I STILL NEED SLEEP!
4:30 - Joe wakes me up when he turns on the light to ask me if he'd taken his bedtime meds and insulin (the ones given to him at 10:00 p.m. some 6 1/2 hours earlier. NOW I'M REALLY NEEDING SLEEP FOR HEALTH AND SANITY. The alarm clock is turned off at this time.
I am unaware of anything else that happened after that, but I do realize the he has finally decided to stay in the bed. I wake up sometime to go to the bathroom, but climb back into bed where I roll over and go back to sleep until almost 9:00 a.m. He sleeps for a couple more hours.
His blood sugar upon arising is 184.
Some time during all this roaming around, he has managed to wash the dishes and break my large crockpot.
Thursday, September 22, 2011
Doctor, Doctor, Tell Me The News...
Joe had exceedingly high blood sugar again this morning - in the mid 400's. Considering the fact that he almost crashed yesterday when I gave him the correct amount of Humalog when it was almost identical, I didn't give as much today. However, I found out that he apparently passed out while at the Senior Center this morning. Luckily there was a health fair going on and EMT's were there to check him out. Good blood pressure, good blood sugar so what's up?!
He had an eye appointment with Dr. Dodd today. I made it since he's been saying he thinks he's going blind. Luckily after an examination, it appears that everything is status quo. No changes at all in his eyesight. Apparently the dialysis sessions have just been messing with his eyesight.
Then it was on to physical therapy. It was just simple walking exercises today which also involved an obstacle course with three items evenly spaced in a line. He was supposed to go in and out the items just like a slalom course. He was doing fine for awhile until he decided to circle the middle one a couple of times for no reason - and it wasn't to purposely mess with Kraig or me. Near the end of the session Kraig asked him to remember a word "perform" which he would ask him to repeat in about 10 minutes. He couldn't.
After the session, then it was off to the lab again - this time another blood test to test his testosterone.
He went to bed early again tonight - a little after 7:00 p.m. I'll get him up in a few hours for his night pills and meds. I just wish he'd get his sleeping straighten out.
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Note: I've realized that if there is a doctor appointment or anything that has been scheduled for Joe, he tends to ask over and over again what and when it's going to happen. He can't get it straight in his mind. We can have the same conversation repeated several times in a very short time.
He had an eye appointment with Dr. Dodd today. I made it since he's been saying he thinks he's going blind. Luckily after an examination, it appears that everything is status quo. No changes at all in his eyesight. Apparently the dialysis sessions have just been messing with his eyesight.
Then it was on to physical therapy. It was just simple walking exercises today which also involved an obstacle course with three items evenly spaced in a line. He was supposed to go in and out the items just like a slalom course. He was doing fine for awhile until he decided to circle the middle one a couple of times for no reason - and it wasn't to purposely mess with Kraig or me. Near the end of the session Kraig asked him to remember a word "perform" which he would ask him to repeat in about 10 minutes. He couldn't.
After the session, then it was off to the lab again - this time another blood test to test his testosterone.
He went to bed early again tonight - a little after 7:00 p.m. I'll get him up in a few hours for his night pills and meds. I just wish he'd get his sleeping straighten out.
--------------------------------------------
Note: I've realized that if there is a doctor appointment or anything that has been scheduled for Joe, he tends to ask over and over again what and when it's going to happen. He can't get it straight in his mind. We can have the same conversation repeated several times in a very short time.
Wednesday, September 21, 2011
He called me at work on Monday a little after 5:00 p.m. and wanted to know where I was. I had to remind him that I work until 5:30 and then I was going to Wal-Mart afterwards. Did he want to ride with me? He said no.
Then last night he called me while I was in my photography class at the college before it was over wanting to know where I was.
Last Friday he called me shortly after I'd gotten to work to ask me where his juice and snack was for dialysis. I'd forgotten to get them out and he was panicking. Note to self...make sure all of Joe's things and Joe himself are ready before I leave the house.
The prescription for Lunesta from Dr. Fox seems to be working. Joe has actually been sleeping better if I can just get him to stay in the bed. He says it's uncomfortable, but I've rotated and turned the mattress. I have no problem sleeping as long as he's not up and down and I wear the earplugs.
Then last night he called me while I was in my photography class at the college before it was over wanting to know where I was.
Last Friday he called me shortly after I'd gotten to work to ask me where his juice and snack was for dialysis. I'd forgotten to get them out and he was panicking. Note to self...make sure all of Joe's things and Joe himself are ready before I leave the house.
The prescription for Lunesta from Dr. Fox seems to be working. Joe has actually been sleeping better if I can just get him to stay in the bed. He says it's uncomfortable, but I've rotated and turned the mattress. I have no problem sleeping as long as he's not up and down and I wear the earplugs.
Thursday, September 15, 2011
215
Oh, how coincidental...215 was Joe's blood sugar this morning at about the same time I got up with him - 2:15 a.m. He said his back/rib was hurting him so he got up and I did too so I could give him a pain pill, plug in the heating pad, fix a bed for him on the couch and finally go back to bed. About an hour later though, I was back up checking on him. Then about another hour later, when I checked on him, I discovered he'd moved to his big chair. Oh, I need sleep - badly!!!
Sometime before the 2:15 though Joe was up doing something. I didn't quite know what he was doing. He was in the bathroom and when I called to him, he said he was "trimming his moustache." That's when I jumped out of bed and wound up trying to fix his shaved moustach so it was suitable to be seen in public. He had mentioned something about having it trimmed after we were in bed for the first time - I told him I'd do it for him this morning. Once again, he couldn't wait...patience or waiting is something he no longer seems to exhibit.
Joe now weighs 212 lbs.
I've had to tell him twice today already that he DOES NOT have Kiwanis today. It's only on Tuesdays. He thinks and did think that it was Tuesday today.
He has an appointment with Dr. Fox this morning. Later...I gave Dr. Fox the list of all the things that have happened in the last week. No definitive help from her yet except for some sleeping medication and a future appointment with a neurologist. She at least realizes that there is definite changes in Joe. He went back in for more blood work today to determine if his blood platelets have changed.
He did great at therapy today except when it came to Kraig asking him what year it was and he finally announced that it was 1998 and he was serious about it.
Sometime before the 2:15 though Joe was up doing something. I didn't quite know what he was doing. He was in the bathroom and when I called to him, he said he was "trimming his moustache." That's when I jumped out of bed and wound up trying to fix his shaved moustach so it was suitable to be seen in public. He had mentioned something about having it trimmed after we were in bed for the first time - I told him I'd do it for him this morning. Once again, he couldn't wait...patience or waiting is something he no longer seems to exhibit.
Joe now weighs 212 lbs.
I've had to tell him twice today already that he DOES NOT have Kiwanis today. It's only on Tuesdays. He thinks and did think that it was Tuesday today.
He has an appointment with Dr. Fox this morning. Later...I gave Dr. Fox the list of all the things that have happened in the last week. No definitive help from her yet except for some sleeping medication and a future appointment with a neurologist. She at least realizes that there is definite changes in Joe. He went back in for more blood work today to determine if his blood platelets have changed.
He did great at therapy today except when it came to Kraig asking him what year it was and he finally announced that it was 1998 and he was serious about it.
Wednesday, September 14, 2011
Today was dialysis day. Joe got physically ill today when they took him too far below his dry weight. After I put him in the car, I went back inside to ask th staff how much more fluid do they expect to take off. He's lost so much weight that his clothes and shoes don't fit him anymore. And, it's like the life has been sucked out of him. I told the technician briefly what has been going on with him in the last few days, i.e., falls, loss of memory, etc. He said he'd tell Joe's nephrologist when he saw him. A short time later I got a phone call saying that Joe was going to be scheduled for an echocardiogram with his cardiologist shortly.
His blood sugar was perfect this morning - 118 and he slept all night long.
His blood sugar was perfect this morning - 118 and he slept all night long.
Tuesday, September 13, 2011
Two Falls In One Day
Joe was getting the dog food out of the container this morning when he lost his balance and fell backwards onto the carpet. I can't really help him up at times. He's so heavy and it strains my back so sometimes all I can do is suggest how he might get up. I've noticed that I've started having a sore back in the last couple of weeks. It's like a dull ache and I'm sure it's from pulling on Joe.When I can help him, I do.
Then apparently Joe fell again later this morning when the CATC bus came by to pick him up. He said he fell as he got out of the dining room chair. The driver came to the door looking for him, but according to Joe, they aren't allowed to come into the homes. So, he somehow got himself up and out the door.
Then apparently Joe fell again later this morning when the CATC bus came by to pick him up. He said he fell as he got out of the dining room chair. The driver came to the door looking for him, but according to Joe, they aren't allowed to come into the homes. So, he somehow got himself up and out the door.
Sunday, September 11, 2011
Urpy
Joe got physically ill sometime this morning before I woke up - that's what he said anyway. I had made plans for us to go to church. Just for Sacrament Meeting, but he wasn't feeling well and I had cooking to do for the office picnic so neither of us made it.
He didn't go to the picnic nor Sadie's wedding which followed in the middle of the picnic. In fact, he spent most of the day in the bed.
I was asked this evening if it was Memorial Day and was it Monday. I replied "no" to both questions, explained what today was and asked if he understood what I was saying. He commented that he was "processing it".
He's now in bed again, which was shortly after 8:00 p.m. I feel that I will be going that way shortly myself as I need to get up in the morning and make sure the house is in order and he's ready before I leave.
He didn't go to the picnic nor Sadie's wedding which followed in the middle of the picnic. In fact, he spent most of the day in the bed.
I was asked this evening if it was Memorial Day and was it Monday. I replied "no" to both questions, explained what today was and asked if he understood what I was saying. He commented that he was "processing it".
He's now in bed again, which was shortly after 8:00 p.m. I feel that I will be going that way shortly myself as I need to get up in the morning and make sure the house is in order and he's ready before I leave.
Saturday, September 10, 2011
HI
We aren't going out of town today. No daycation for us today. Too much to do - grocery shopping, housecleaning, lunch with Trina to celebrate her birthday and I also need to get ready for the company picnic tomorrow and Sadie's wedding. I did sleep in until 8:00. Joe had climbed back into the bed sometime this morning after not being there the majority of the night. I don't know where or what he was doing - I was too tired to get up and check on him.
When I got up I was hoping for some alone time so I could do dishes and straighten the house up without him being up. There are times that if I have to listen to CNN one more time, I feel as though I'm going to scream. It's usually on every morning when I wake up and a constant in my ear whenever he has the television on. We have a bijillion channels and he's stuck on that one. Then there is usually the questions about " where is my..." and I have to get up to find "it" or he's looking for something and I get up to find it because it's just much easier than having him riffle through things and disturb what organization I might have.
Anyway, only moments after I got out of bed, so did he. I did convince him to take his morning meds and go back to bed for awhile. I took his blood sugar first and the glucometer read "HI" which means it's exceedingly high - off the sliding scale. Instead of the Humalog, I gave him about 5 units of Lantus and hope that will bring it down safely.
I quizzed him about what he might have eaten while I was sleeping as I saw the empty box of Cheerios and the crushed empty milk jug. Somewhere during the time I was unaware of his grazing, he'd also eaten two packets of instant oatmeal and an apple. Heaven only knows what else he may have eaten. I'm so glad that I bought the locking toolbox and have it stashed with things he can't get to. If only I could lock the kitchen door when I'm not home or asleep!
Gonna stop for now and get busy while the house is quiet.
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We met Trina for lunch today. It's becoming increasingly apparent to me how much Joe is changing when we eat out these days. When we go to the Dragon Wall, I've now started fixing Joe's plate as he has problems walking with it and tends to be on the verge of dumping its contents out on the floor. He also has basically no idea of where his plate should be in relation to feeding himself. Many times I have to move the plate in front of him and push it towards the edge of the table to catch the food that he tries to place on his fork or spoon. We don't have a lot of conversation during the meal. Joe usually buries his face almost in his plate and stays that way until he has cleared his plate as best as he can. At the conclusion of his meal, it now looks as through a small child has just completed eating. That was the case again today at lunch with Trina. One of the frustrating things about his illness is that even simple things such as having a fun lunch alone with friends is becoming a thing of the past. I take him with me so that I can keep my eyes on him and keep him safe as it's becoming increasingly difficult to leave him alone at the house alone. And, I would feel guilty leaving him home while I'm out having a fun time with a friend without him. I am losing my sense of "me" more and more, but would never want to hurt his feelings or make him think I don't love him.
---------------------------------------
Joe is developing a mentality that that when he wants something done, he won't wait until it's convenient to me. Case in point....Our landlord is putting up a new fence. We are unable to reach our trashcan. There were a couple of trashbags that needed to be put into the receptacle. I said I would drop them over the fence "in a little while" and then drive the car around into the alley to retrieve and deposit them. I then went on to do something else. Shortly I heard Joe go out the backdoor and proceed to drop the bags over the fence which forced me to drive the car around immediately so that dogs wouldn't rip into the bags. During the process he lost his balance and fell to the ground and couldn't get up. I saw this and decided to see what he would do. He struggled and struggled to get up, but couldn't. I almost torn the little bush out of the ground trying to use it as levage to get up. He couldn't move his feet behind him or figure out how to crawl to try to stand up. I left him there to prove a point for about 10 minutes. The point being what would have happened had I not been there and eventually helped him up? But then I realized that Joe most likely wouldn't "get the point" as his mind wouldn't remember what had just happened so went to help him up.
When I got up I was hoping for some alone time so I could do dishes and straighten the house up without him being up. There are times that if I have to listen to CNN one more time, I feel as though I'm going to scream. It's usually on every morning when I wake up and a constant in my ear whenever he has the television on. We have a bijillion channels and he's stuck on that one. Then there is usually the questions about " where is my..." and I have to get up to find "it" or he's looking for something and I get up to find it because it's just much easier than having him riffle through things and disturb what organization I might have.
Anyway, only moments after I got out of bed, so did he. I did convince him to take his morning meds and go back to bed for awhile. I took his blood sugar first and the glucometer read "HI" which means it's exceedingly high - off the sliding scale. Instead of the Humalog, I gave him about 5 units of Lantus and hope that will bring it down safely.
I quizzed him about what he might have eaten while I was sleeping as I saw the empty box of Cheerios and the crushed empty milk jug. Somewhere during the time I was unaware of his grazing, he'd also eaten two packets of instant oatmeal and an apple. Heaven only knows what else he may have eaten. I'm so glad that I bought the locking toolbox and have it stashed with things he can't get to. If only I could lock the kitchen door when I'm not home or asleep!
Gonna stop for now and get busy while the house is quiet.
---------------------------------------
We met Trina for lunch today. It's becoming increasingly apparent to me how much Joe is changing when we eat out these days. When we go to the Dragon Wall, I've now started fixing Joe's plate as he has problems walking with it and tends to be on the verge of dumping its contents out on the floor. He also has basically no idea of where his plate should be in relation to feeding himself. Many times I have to move the plate in front of him and push it towards the edge of the table to catch the food that he tries to place on his fork or spoon. We don't have a lot of conversation during the meal. Joe usually buries his face almost in his plate and stays that way until he has cleared his plate as best as he can. At the conclusion of his meal, it now looks as through a small child has just completed eating. That was the case again today at lunch with Trina. One of the frustrating things about his illness is that even simple things such as having a fun lunch alone with friends is becoming a thing of the past. I take him with me so that I can keep my eyes on him and keep him safe as it's becoming increasingly difficult to leave him alone at the house alone. And, I would feel guilty leaving him home while I'm out having a fun time with a friend without him. I am losing my sense of "me" more and more, but would never want to hurt his feelings or make him think I don't love him.
---------------------------------------
Joe is developing a mentality that that when he wants something done, he won't wait until it's convenient to me. Case in point....Our landlord is putting up a new fence. We are unable to reach our trashcan. There were a couple of trashbags that needed to be put into the receptacle. I said I would drop them over the fence "in a little while" and then drive the car around into the alley to retrieve and deposit them. I then went on to do something else. Shortly I heard Joe go out the backdoor and proceed to drop the bags over the fence which forced me to drive the car around immediately so that dogs wouldn't rip into the bags. During the process he lost his balance and fell to the ground and couldn't get up. I saw this and decided to see what he would do. He struggled and struggled to get up, but couldn't. I almost torn the little bush out of the ground trying to use it as levage to get up. He couldn't move his feet behind him or figure out how to crawl to try to stand up. I left him there to prove a point for about 10 minutes. The point being what would have happened had I not been there and eventually helped him up? But then I realized that Joe most likely wouldn't "get the point" as his mind wouldn't remember what had just happened so went to help him up.
A positive point of today is that Joe woke up and knew it was Saturday - he didn't have to ask what day it was.
"I Can't Remember How To Put On My Shoes" - September 8, 2011
Nothing special to say about me other than I never thought I'd be at this point in my life with a husband with continued failing health. We've been married for just a little over 7 years and since July of 2010 our lives have drastically changed. Joe had a heart attack and even died and was revived. Total kidney failure occurred within a matter of a few weeks followed by a series of other medical problems for almost a year. He's now on the verge of losing his eyesight and is showing evidence of memory loss. So, in an effort to document this journey into our unknown, I'm going to attempt to describe life as it was, now is and what may be precursors to our future.
Only two people really know how this is all affecting my own personal life and I'm not writing this for my children to ever read. My fear is that they wouldn't and couldn't understand and would judge me more harshly than I've already been judged. So, it's easier to just record for my own personal documentation.
He went to therapy last Tuesday and met with another therapist. Jeff checked reactions to questions, muscle reflexes and associated tests. Based on how Joe was doing before he had too much fluid drawn off him in dialysis, it is the consensus that Joe's physical condition has deteriorated.
Then a pivotal moment happened to make me take stock of possible drastic changes. It all began early last Thursday morning. It became a morning that made me instantaneously know that life with Joe was changing at that very moment. I normally find and pick out his clothing each morning so that I'm assured he won't go out into the world looking like some homeless guy off the street. Lately it seems as though it's become more than picking out the clothes, but now helping him to dress more often. He seems to have no strength or energy to do that recently. Thursday was one of those days. I found him a shirt, his pants, his special diabetic socks and laid them all on the dining room table. For the sake of time, I went ahead and helped him dress - even zipping up his jeans and fastening his belt. Just before hopping into the shower, I heard him say to me "You'll have to help me with my shoes". "Why"?, I asked. And in his quiet voice he said, "I can't remember how to put on my shoes."
Then yesterday when I delivered him home from dialysis, I came into the house to use the bathroom. Imagine my shock and frustration when I discovered that he'd spilt a large quantity of copper sulfate all over the bathroom floor, the toilet, the rugs - everywhere possible while trying to pour it into the toilet. And he left it there. He had mentioned to our landlord sometime in the recent past that we needed something to add to our toilet to keep it unclogged. Apparently the landlord had brought some over and Joe thought it necessary to add not a little to the toilet, but the entire amount. In doing so, he had made this unbelievable mess. I don't think his mind comprehended what he had done and the consequence of my reaction upon finding this. I am only human, was in a rush to get back to the office, still needed to use the bathroom, but first I had to clean up this colossal mess so I was very upset and set off on a litany of unrepeatable one-sided conversation. This is just the latest example of him "helping" and it causing me to do clean-up.
I've decided it has become a necessary evil to start keeping an account of things that are happening with Joe. I know that I'll most likely be bouncing back and forth and around to do this, but I feel quite certain that somewhere in the future this will benefit either him or me or the both of us.
---------------------------------------
Note to self: No more whole chicken for Joe. He couldn't figure out how to get the grilled chicken off the bones last night at dinner. So, I came and picked the chicken off for him.
Also, Joe has started experiencing problems when it comes to swallowing - even water. It tends to make him cough as though he's choking.
Only two people really know how this is all affecting my own personal life and I'm not writing this for my children to ever read. My fear is that they wouldn't and couldn't understand and would judge me more harshly than I've already been judged. So, it's easier to just record for my own personal documentation.
He went to therapy last Tuesday and met with another therapist. Jeff checked reactions to questions, muscle reflexes and associated tests. Based on how Joe was doing before he had too much fluid drawn off him in dialysis, it is the consensus that Joe's physical condition has deteriorated.
Then a pivotal moment happened to make me take stock of possible drastic changes. It all began early last Thursday morning. It became a morning that made me instantaneously know that life with Joe was changing at that very moment. I normally find and pick out his clothing each morning so that I'm assured he won't go out into the world looking like some homeless guy off the street. Lately it seems as though it's become more than picking out the clothes, but now helping him to dress more often. He seems to have no strength or energy to do that recently. Thursday was one of those days. I found him a shirt, his pants, his special diabetic socks and laid them all on the dining room table. For the sake of time, I went ahead and helped him dress - even zipping up his jeans and fastening his belt. Just before hopping into the shower, I heard him say to me "You'll have to help me with my shoes". "Why"?, I asked. And in his quiet voice he said, "I can't remember how to put on my shoes."
Then yesterday when I delivered him home from dialysis, I came into the house to use the bathroom. Imagine my shock and frustration when I discovered that he'd spilt a large quantity of copper sulfate all over the bathroom floor, the toilet, the rugs - everywhere possible while trying to pour it into the toilet. And he left it there. He had mentioned to our landlord sometime in the recent past that we needed something to add to our toilet to keep it unclogged. Apparently the landlord had brought some over and Joe thought it necessary to add not a little to the toilet, but the entire amount. In doing so, he had made this unbelievable mess. I don't think his mind comprehended what he had done and the consequence of my reaction upon finding this. I am only human, was in a rush to get back to the office, still needed to use the bathroom, but first I had to clean up this colossal mess so I was very upset and set off on a litany of unrepeatable one-sided conversation. This is just the latest example of him "helping" and it causing me to do clean-up.
I've decided it has become a necessary evil to start keeping an account of things that are happening with Joe. I know that I'll most likely be bouncing back and forth and around to do this, but I feel quite certain that somewhere in the future this will benefit either him or me or the both of us.
---------------------------------------
Note to self: No more whole chicken for Joe. He couldn't figure out how to get the grilled chicken off the bones last night at dinner. So, I came and picked the chicken off for him.
Also, Joe has started experiencing problems when it comes to swallowing - even water. It tends to make him cough as though he's choking.
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