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.
Thursday, October 27, 2011
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.
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| Joe tried to clean up his mess by pouring undiluted Dawn dish detergent directly on the carpet. |
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| 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.
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