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Required Reading: "Take 2"
This just came out in the Alzheimer's Reading Room. Personally, I think it should be required reading for everyone, especially those in the medical field. It puts forth the "true" face of the Alzheimer's patient. The mass populace must change their perspective of persons who become afflicted by this debilitating disease. To reiterate what Angil Tarach, the writer of this article, is saying, people need to understand Alzheimer's (or any type of dementia). They must learn and understand that the AD victim is a person with a disease, not a person who is a disease. There is a huge difference here!
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Julie
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Julie
Who Is She Today?
This is part of a story I am writing about some of the episodes that took place this past summer as I spent time caring for my husband of 35 years whose cognitive functions were rapidly deteriorating from Alzheimer's Disease. My characters have been given different names, for I find it easier to write down the incidents that way. Essentially, however, this took place sometime in July, 2009. His obsession with finances were distracting and they continued every now and then up until the time he could no longer communicate outside his AD world a few weeks ago. I hope it might help others who are dealing with loved ones suffering the symptoms of Alzheimer's or Dementia.
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ANGER AND CONFUSION
This episode took place in early July. I would say this depicts the middle-stage/moderate Alzheimer's, or approximately what is called "Stage 5" out of seven stages. Things were becoming much more difficult to manage at this time. It's not a happy writing, but then, experiencing the progression of AD is not a happy time in life. I'm sure those Caretakers out there will identify with this and agree. I can only wonder what is going through the mind of the AD victim to cause their action. It's good to be positive and upbeat, but it's necessary to be practical, too. I tried to be all of those things and can only hope I was moderately successful.
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Jim’s Angiogram Day
Here is an update on our journey to "Never Never Land." We still don't have a firm diagnosis for Jim's condition. It could be caused from a stroke, Alzheimer's, or dementia. I call it Never Never Land because I wish nobody ever had to visit the place! Following is the letter I sent to his brothers and sisters to inform them of their brother's experience (and my impression of it).
Glad today, August 6, 2009, is over. It started at 4:40 a.m. getting ready for our 6:30 appointment for Jim’s angiogram. Try getting a slow-motioned overgrown 4-year-old dressed for the public when you’re old and slow-motioned, too. But, we made it in time! This time we had a room waiting and a top-notch nursing staff. First came the “weigh-in” at 170 lbs…which means he has lost 6 pounds since last doctor’s visit. He has a fantastic appetite, but he stays in almost constant motion, so I suppose he walks the pounds all off. Next, change from street clothes into hospital gown. Sigh! Hook ups to blood pressure monitor and other various mechanisms. He wanted breakfast (no food or drink after midnight left him hungry and his pleas for cookies didn’t work with me today) so the nurse told him he was getting steak and eggs in his IV even though he wouldn’t be able to taste it. That pacified him. Another EKG was taken…this makes about 5 in the past few months. Thoreau professed “Simplify! Simplify! Simplify!” Government and other professions seem to profess “Multiply! Multiply! Multiply!”
All preps had been done by 8 ‘o clock when he was wheeled out of his room to have the angiogram done. In about an hour, he was wheeled back into his room, quiet and sedated. Usually, this is done with local anesthetic but he was so animated they had to sedate him. Soon the doctor came in to report that they could not put in a stent because the left Carotid artery had too much blockage. The portion that pumps blood to the frontal lobes of the brain was about 80% blocked and the portion that pumps blood to the arm was almost 100% blocked and surgery would be required. Therefore, we now have an appointment for next Thursday, August 13th, with a surgeon. It so happens that this surgeon is the same one we started with last May. I’m guessing that he will have reviewed Jim’s various tests, will give us a report, and schedule a date for surgery! Seems the medical profession also professes “Procrastinate! Procrastinate! Procrastinate” unless it’s a 911 emergency! Another sigh! The doctor also reported that the right Carotid artery has some blockage, but not enough to worry about right now, but it may need work in a year or two. By 11 o’ clock Jim had been dismissed, redressed, wheeled to the entry way, and put into the back seat of our son’s car and started on the way back home.
He slept for about 3 hours, drank about 4 cups of coffee, wandered around the house for awhile, and now (12 hours later) he is beginning is “Sundowner” wanderings, checking out all the rooms and finding things to move around and “redecorate.” My son and daughter-in-law are staying over tonight to help keep and eye on him and that gives me a little time to write this message to you. It’s almost time for his “happy pill” (divalproex sodium 250 mg) to keep him mellow and keep the aggressive moods at bay. Now if we can only get him to sleep during the night and stop his roaming around! After all the sleep he had this afternoon, tonight might just be a doozy! Oh, no! He just decided to lie down on the sofa and catch a few more zzz’s and I don’t have the heart to wake him.
As for me…I’m feeling well this evening. To have this day over and to have help tonight relieves a lot of tension. And, now you have an almost complete report on “Jim’s Angiogram Day.” I’m not ecstatic over the results, but I’m hoping the future will still bring better news.
Glad today, August 6, 2009, is over. It started at 4:40 a.m. getting ready for our 6:30 appointment for Jim’s angiogram. Try getting a slow-motioned overgrown 4-year-old dressed for the public when you’re old and slow-motioned, too. But, we made it in time! This time we had a room waiting and a top-notch nursing staff. First came the “weigh-in” at 170 lbs…which means he has lost 6 pounds since last doctor’s visit. He has a fantastic appetite, but he stays in almost constant motion, so I suppose he walks the pounds all off. Next, change from street clothes into hospital gown. Sigh! Hook ups to blood pressure monitor and other various mechanisms. He wanted breakfast (no food or drink after midnight left him hungry and his pleas for cookies didn’t work with me today) so the nurse told him he was getting steak and eggs in his IV even though he wouldn’t be able to taste it. That pacified him. Another EKG was taken…this makes about 5 in the past few months. Thoreau professed “Simplify! Simplify! Simplify!” Government and other professions seem to profess “Multiply! Multiply! Multiply!”
All preps had been done by 8 ‘o clock when he was wheeled out of his room to have the angiogram done. In about an hour, he was wheeled back into his room, quiet and sedated. Usually, this is done with local anesthetic but he was so animated they had to sedate him. Soon the doctor came in to report that they could not put in a stent because the left Carotid artery had too much blockage. The portion that pumps blood to the frontal lobes of the brain was about 80% blocked and the portion that pumps blood to the arm was almost 100% blocked and surgery would be required. Therefore, we now have an appointment for next Thursday, August 13th, with a surgeon. It so happens that this surgeon is the same one we started with last May. I’m guessing that he will have reviewed Jim’s various tests, will give us a report, and schedule a date for surgery! Seems the medical profession also professes “Procrastinate! Procrastinate! Procrastinate” unless it’s a 911 emergency! Another sigh! The doctor also reported that the right Carotid artery has some blockage, but not enough to worry about right now, but it may need work in a year or two. By 11 o’ clock Jim had been dismissed, redressed, wheeled to the entry way, and put into the back seat of our son’s car and started on the way back home.
He slept for about 3 hours, drank about 4 cups of coffee, wandered around the house for awhile, and now (12 hours later) he is beginning is “Sundowner” wanderings, checking out all the rooms and finding things to move around and “redecorate.” My son and daughter-in-law are staying over tonight to help keep and eye on him and that gives me a little time to write this message to you. It’s almost time for his “happy pill” (divalproex sodium 250 mg) to keep him mellow and keep the aggressive moods at bay. Now if we can only get him to sleep during the night and stop his roaming around! After all the sleep he had this afternoon, tonight might just be a doozy! Oh, no! He just decided to lie down on the sofa and catch a few more zzz’s and I don’t have the heart to wake him.
As for me…I’m feeling well this evening. To have this day over and to have help tonight relieves a lot of tension. And, now you have an almost complete report on “Jim’s Angiogram Day.” I’m not ecstatic over the results, but I’m hoping the future will still bring better news.
Jim's Doctor's Appointment
Thursday, August 13, 2009
We had the appointment with Doctor Robertson this morning. He confirmed that Jim’s left Carotid artery is 80% blocked that goes to his head. The left carotid subclavian portion that goes to his arm is 100% blocked. The doctor has scheduled surgery for Tuesday morning (August 18) and will do a carotid endarterectomy to remove plaque from the 80% blockage. If he is unable to remove the plaque for the arm where there is 100% blockage, he will do a “left carotid- subclavian bypass.” Both surgeries will be done at the same time. The main purpose of the surgery is to vastly reduce the risk of further strokes. See the link below:
view link
Otherwise, Jim is healthy as a good working horse! His weight is 170 lbs, blood pressure is 120/70 (Oh to be so fortunate!) He does have a problem with his balance and one doctor says this may help, another says it won’t and is probably something to do with the inner ear. We have an appointment for the 27th to get his eyes checked for new glasses. The ones he has now are at least 6 years old…and if new ones don’t help his balance, at least they may help him see better. His old ones are all pitted, so the elimination of the old pits surely will help.
His attitude stays positive (I wish mine were so good) and he smiles, sings…and I even heard him whistling the other day. Can you imagine? No teeth and he’s whistling! The 250 mg divalproex pills he takes (1 in the morning, 1 at night) has made a vast difference in his behavior. He is much more like the Gentle Jim I’ve always known. I hope the surgery doesn’t upset that balance!
Tomorrow we go to get his pre-op lab work drawn. Last week when they drew blood, he filled the little tubes fast, fast, fast! Mine seems to seep and take forever when they draw blood!
We’re back home in record time, taking less than an hour for the appointment, and Jim is already checking out my brother-in-law’s pickup that he keeps parked in front of our house. It keeps him occupied for hours walking around and around it, checking tires, trying to unlock it with is fingernail clippers, letting the tailgate down, etc. He’s told me several times he has bought the vehicle and wondered if I’d like to go for a ride with him. I think that not having a vehicle and not being able to drive is what bothers him most.
Julie
We had the appointment with Doctor Robertson this morning. He confirmed that Jim’s left Carotid artery is 80% blocked that goes to his head. The left carotid subclavian portion that goes to his arm is 100% blocked. The doctor has scheduled surgery for Tuesday morning (August 18) and will do a carotid endarterectomy to remove plaque from the 80% blockage. If he is unable to remove the plaque for the arm where there is 100% blockage, he will do a “left carotid- subclavian bypass.” Both surgeries will be done at the same time. The main purpose of the surgery is to vastly reduce the risk of further strokes. See the link below:
view link
Otherwise, Jim is healthy as a good working horse! His weight is 170 lbs, blood pressure is 120/70 (Oh to be so fortunate!) He does have a problem with his balance and one doctor says this may help, another says it won’t and is probably something to do with the inner ear. We have an appointment for the 27th to get his eyes checked for new glasses. The ones he has now are at least 6 years old…and if new ones don’t help his balance, at least they may help him see better. His old ones are all pitted, so the elimination of the old pits surely will help.
His attitude stays positive (I wish mine were so good) and he smiles, sings…and I even heard him whistling the other day. Can you imagine? No teeth and he’s whistling! The 250 mg divalproex pills he takes (1 in the morning, 1 at night) has made a vast difference in his behavior. He is much more like the Gentle Jim I’ve always known. I hope the surgery doesn’t upset that balance!
Tomorrow we go to get his pre-op lab work drawn. Last week when they drew blood, he filled the little tubes fast, fast, fast! Mine seems to seep and take forever when they draw blood!
We’re back home in record time, taking less than an hour for the appointment, and Jim is already checking out my brother-in-law’s pickup that he keeps parked in front of our house. It keeps him occupied for hours walking around and around it, checking tires, trying to unlock it with is fingernail clippers, letting the tailgate down, etc. He’s told me several times he has bought the vehicle and wondered if I’d like to go for a ride with him. I think that not having a vehicle and not being able to drive is what bothers him most.
Julie
It's been a long time,
and so much has happened since I last wrote in April about my husband's problem. Here it is, mid-July, and there are not enough words to describe the multitude of ups and downs there have been. One of the most frustrating thing I've encountered is the slow movement in the medical profession. I wonder so often if I am inept at working with the people in this field or if it really just moves so slowly.
Because there were no adequate facilities in our area to treat Hubby's problem, so we made a move from our New Mexico home to Lubbock, TX, to be next-door to my sister, and other family members. Our family physician an ultrasound image done on him that showed his left Carotid artery blocked on the left side, even to the point of reverse blood flow in one place. He referred us to a cardiologist in Lubbock and mentioned there would probably be a CT scan and a Doppler test done, and then an angiogram (spelling?) would be performed to clear the artery to eliminate the possibility of a stroke. He explained Hubby’s strange behavior as a result caused from the stress of Hubby stopping smoking “cold turkey” his fifty-plus years of a pack-a-day smoking habit. This happened on the 5th of April, 2009.
Since that time, we have gone through various medical facilities, until…finally, we obtained a family physician, which seems a requirement to get necessary referrals to other specialists. Meanwhile, we have endured agonizing times of Hubby’s mood swings, his inability to communicate intelligently, his frustration at not being able to say the right words, his anger…and our complete inability to understand this debilitating situation. Our new family physician did suggest that Hubby’s most likely had a stroke at about the same time he quit smoking. Most doctors have agreed that just stopping the smoking habit would not cause his mental cognitive decline.
After obtaining CT scan and a Doppler test, our new doctor has referred us to another cardiologist who he said, “is a kind and caring, very capable doctor who probably will have an angiogram taken, then surgery to remove the blockage from the arteries (left one is worse, but the right one is also blocked), and stints inserted to increase the blood flow.” This afternoon, I received a phone call from the Referral Center saying we have an appointment set up for August 3rd. The only problem at the moment is to obtain an EKG before the appointment. Of all the ultra sound tests, CT scans, Doppler test, ECG’s, chest x-rays, not one EKG has been done. But, at least we feel we now have hope. We have been told that this may not help his cognitive function but will stop any further strokes. Medication has helped calm his incessant walking, pacing, constant moving around. It has helped him to make it through most nights without getting up to “rearrange” things in the house. Most of all, it has almost stopped his angry spells and allowed him to even converse at times in an intelligible manner. What a blessed relief it has been to everyone involved…him and all of us.
I know we still have a long, long road ahead of us. I can never repay the generosity, love, and support of my sister and brother-in-law. I could never have made it this far without them. I’m able to sit here and write this because they are caring for Hubby tonight while I enjoy some wonderful “me time.”
At this moment, we still have no real idea of what his mental problem is. Only time will tell whether it will degenerate to Alzheimer’s or Dementia. Hope beyond hope is that after surgery, if it is caused from a stroke, the brain will gradually re-circuit itself to a point where life can be more tolerable for him and all of us.
Thank you for your time. I’ll try to keep you posted on progress, even if it takes 2-month intervals. Meanwhile, I’d suggest that you keep notes of your own experiences. Even a line or two as a reminder of what you have gone through so that you can remember later on the things you normally would simply forget and leave in the past. What you tell others about your experience could very well be most helpful to those following this long, emotional roller-coaster ride down a very jagged path of life.
Because there were no adequate facilities in our area to treat Hubby's problem, so we made a move from our New Mexico home to Lubbock, TX, to be next-door to my sister, and other family members. Our family physician an ultrasound image done on him that showed his left Carotid artery blocked on the left side, even to the point of reverse blood flow in one place. He referred us to a cardiologist in Lubbock and mentioned there would probably be a CT scan and a Doppler test done, and then an angiogram (spelling?) would be performed to clear the artery to eliminate the possibility of a stroke. He explained Hubby’s strange behavior as a result caused from the stress of Hubby stopping smoking “cold turkey” his fifty-plus years of a pack-a-day smoking habit. This happened on the 5th of April, 2009.
Since that time, we have gone through various medical facilities, until…finally, we obtained a family physician, which seems a requirement to get necessary referrals to other specialists. Meanwhile, we have endured agonizing times of Hubby’s mood swings, his inability to communicate intelligently, his frustration at not being able to say the right words, his anger…and our complete inability to understand this debilitating situation. Our new family physician did suggest that Hubby’s most likely had a stroke at about the same time he quit smoking. Most doctors have agreed that just stopping the smoking habit would not cause his mental cognitive decline.
After obtaining CT scan and a Doppler test, our new doctor has referred us to another cardiologist who he said, “is a kind and caring, very capable doctor who probably will have an angiogram taken, then surgery to remove the blockage from the arteries (left one is worse, but the right one is also blocked), and stints inserted to increase the blood flow.” This afternoon, I received a phone call from the Referral Center saying we have an appointment set up for August 3rd. The only problem at the moment is to obtain an EKG before the appointment. Of all the ultra sound tests, CT scans, Doppler test, ECG’s, chest x-rays, not one EKG has been done. But, at least we feel we now have hope. We have been told that this may not help his cognitive function but will stop any further strokes. Medication has helped calm his incessant walking, pacing, constant moving around. It has helped him to make it through most nights without getting up to “rearrange” things in the house. Most of all, it has almost stopped his angry spells and allowed him to even converse at times in an intelligible manner. What a blessed relief it has been to everyone involved…him and all of us.
I know we still have a long, long road ahead of us. I can never repay the generosity, love, and support of my sister and brother-in-law. I could never have made it this far without them. I’m able to sit here and write this because they are caring for Hubby tonight while I enjoy some wonderful “me time.”
At this moment, we still have no real idea of what his mental problem is. Only time will tell whether it will degenerate to Alzheimer’s or Dementia. Hope beyond hope is that after surgery, if it is caused from a stroke, the brain will gradually re-circuit itself to a point where life can be more tolerable for him and all of us.
Thank you for your time. I’ll try to keep you posted on progress, even if it takes 2-month intervals. Meanwhile, I’d suggest that you keep notes of your own experiences. Even a line or two as a reminder of what you have gone through so that you can remember later on the things you normally would simply forget and leave in the past. What you tell others about your experience could very well be most helpful to those following this long, emotional roller-coaster ride down a very jagged path of life.
