Today when I got home from a meeting I became upset about dealing with Terry's actions. I feel bad but my first instinct was to run out of the house. Of course I did not do this. I looked up Lewy Body Dementia on the internet once agaiand found this new web sight I had not seen before http://www.brightfocus.org/alzheimers/brightfocus-insights/is-it-alzheimers-disease-or-dementia-with-lewy-bodies.html?gclid=CjwKEAiA4YGjBRDOxa3XvfTnvSASJACC3bLBgnHXfNIqlyrh5wLlSgxCiU0WmH0robYTzpWQEgD8ghoCIRfw_wcBn
My first thought was to post it to facebook with the tag - walk a mile in my shoes, then judge me. I did not do that but I did read this article. It is short and to the point and it does address some of my concerns but not all. It is nice that is does address the caregiver.
Terry is not too far gone yet but I rue the day that I have to put my life on hold to be a full time caretaker. Is this disease something that could have been prevented?
This is going to be a long hard road and I thank God and my friends and family for all the support I get/ have gotten so far.
What does the future hold for us? I wish I knew...........
Monday, November 10, 2014
Tuesday, September 23, 2014
September 23, 2014
It has been a little over a month now since we got the diagnosis for my husband. I don't even remember if I already posted about it or not and can't be bothered to look.
The diagnosis was LEWY BODY disease. I have spent many hours on the internet researching this insidious disease. It seems the out look is not good no matter what you do. It is so distressing to watch what this disease is doing to him and to our life together. Lewy body has symptoms of both Parkinsons and Alzheimers plus it has it's own distinct symptoms.
My mother had Parkinsons (or that is what we were told, more on that later) so the shaking that my husband displayed troubled me, his increasing memory loss was another sign that things were just not right. The VA did testing over a year ago and did determine that he had Vascular Dementia, it was not until after more intense Nuerology testing that they determined it was Lewy Body. Lewy Body is the second most diagnosed form of dementia but is very hard to diagnose. this is where my thought on my Mom come into play, I wonder now if maybe she had Lewy Body and not Parkinsons. From what I have read on the internet the drugs such as Myrapex and others that my Mom took for Parkinsons can cause the anxiety attacks, night screaming and other conditions that my Mom had. It says that people with Lewy body should not take these Nueron drugs that normally help Parkinson patients.
I am so very glad that the VA has given Terry what appears to be the proper diagnosis instead of rushing to conclusions due to his symptoms.
The weakness and apathy of the disease are the hardest part for me to take at this point. He is having problems remembering things but that has been going on for years. I guess that the apathy has also but I am more and more painfully aware of it. He has been sitting on the couch for over six years with apparently nothing to do. It is good to know that he does have a medical condition and not just plan indifference.
His ability to understand how to do things, ie: get something from the car, is becoming increasingly difficult. At the football game on Sunday this week it was raining and the wind was blowing and it was cold, we huddled under umbrellas and blankets. He was just so miserable and did not seem to grasp what to do so I suggested he go to the car, he was literally shaking from the cold. I continued to sit in the stands until the end of the game. When I got to the car he was still shaking from the cold but had not thought to turn the car on to get heat.
It is said that Dementia is the "Long Goodbye".......indeed it is. We celebrated our 43rd wedding anniversary this month and as I looked at a picture from before we were married I could not help but think "where did THAT man go?"
It has been a little over a month now since we got the diagnosis for my husband. I don't even remember if I already posted about it or not and can't be bothered to look.
The diagnosis was LEWY BODY disease. I have spent many hours on the internet researching this insidious disease. It seems the out look is not good no matter what you do. It is so distressing to watch what this disease is doing to him and to our life together. Lewy body has symptoms of both Parkinsons and Alzheimers plus it has it's own distinct symptoms.
My mother had Parkinsons (or that is what we were told, more on that later) so the shaking that my husband displayed troubled me, his increasing memory loss was another sign that things were just not right. The VA did testing over a year ago and did determine that he had Vascular Dementia, it was not until after more intense Nuerology testing that they determined it was Lewy Body. Lewy Body is the second most diagnosed form of dementia but is very hard to diagnose. this is where my thought on my Mom come into play, I wonder now if maybe she had Lewy Body and not Parkinsons. From what I have read on the internet the drugs such as Myrapex and others that my Mom took for Parkinsons can cause the anxiety attacks, night screaming and other conditions that my Mom had. It says that people with Lewy body should not take these Nueron drugs that normally help Parkinson patients.
I am so very glad that the VA has given Terry what appears to be the proper diagnosis instead of rushing to conclusions due to his symptoms.
The weakness and apathy of the disease are the hardest part for me to take at this point. He is having problems remembering things but that has been going on for years. I guess that the apathy has also but I am more and more painfully aware of it. He has been sitting on the couch for over six years with apparently nothing to do. It is good to know that he does have a medical condition and not just plan indifference.
His ability to understand how to do things, ie: get something from the car, is becoming increasingly difficult. At the football game on Sunday this week it was raining and the wind was blowing and it was cold, we huddled under umbrellas and blankets. He was just so miserable and did not seem to grasp what to do so I suggested he go to the car, he was literally shaking from the cold. I continued to sit in the stands until the end of the game. When I got to the car he was still shaking from the cold but had not thought to turn the car on to get heat.
It is said that Dementia is the "Long Goodbye".......indeed it is. We celebrated our 43rd wedding anniversary this month and as I looked at a picture from before we were married I could not help but think "where did THAT man go?"
Monday, August 4, 2014
Learning about Lewy Body dementia
In the past few days I have been asked if the doctors gave us any idea about life expectancy for Terry now that he has been diagnosed. This is not a question that I thought about but it did catch me off guard when asked. I only thought about how his mind would slip away and the time when his drivers liscense would have to be taken away, when he would need me to be home full time, when I would have to take care of his personal hygiene issues, etc. I did not think about the end of his life. How awful to think about such a thing, it makes me feel a physical pain in my heart.
I did google the question and this is what I found :
Lewy body dementia is very difficult to treat. Unfortunately, people with Lewy body dementia often have severe adverse reactions to antipsychotic medications, which are otherwise helpful in treating symptoms such as delusions and hallucinations. Therefore, the use of antipsychotic medications for the treatment of Lewy body dementia is not generally recommended.
It is the coexisting medical conditions and how they react to the disease and the treatment that are the unknown in Terry's situation. The drug therapy that he will start soon is known to cause damage to lungs and kidneys. With the emphysema and CKD that he has they have started him on half of the lowest dosage for one month. The drug will not cure the dementia but should make the violent outbursts and memory loss not so noticeable.
More to come as I continue to research. right now he is not asking any questions and seems fine with the diagnosis. I pray he can stay in his contented state.
I did google the question and this is what I found :
Lewy body dementia is very difficult to treat. Unfortunately, people with Lewy body dementia often have severe adverse reactions to antipsychotic medications, which are otherwise helpful in treating symptoms such as delusions and hallucinations. Therefore, the use of antipsychotic medications for the treatment of Lewy body dementia is not generally recommended.
No drugs have been approved by the FDA to specifically treat Lewy body dementia, but Alzheimer's treatments have been shown to be helpful. In fact, some researchers say that those with Lewy body dementia respond better tocholinesterase inhibitors, such as Aricept, Exelon, and Razadyne, than those with any other type of dementia.
- Profile: Aricept (donepezil)
- Profile: Exelon (rivastigmine)
- Profile: Razadyne (galantamine)
Because individuals with Lewy body dementia often have Parkinson's-like problems, medications for Parkinson's disease can help treat related symptoms. However, they can also increaseconfusion, delusions, and hallucinations.
Behavior management strategies are also useful for managing the difficult behavioral symptoms of Lewy body dementia. Reducing caffeine intake, increasing physical activity during the day, and providing relaxing activities in the evening can improve sleep patterns and decrease violent outbursts during the night.
Prognosis for Lewy Body Dementia
Unfortunately, there is currently no cure for Lewy body dementia. One study found that the average life expectancy for a person with Lewy body dementia after the symptoms first appear was 7 years. However, individuals with Lewy body dementia have lived anywhere between 2 and 20 years, depending on age, the severity of symptoms, and coexisting medical conditions.It is the coexisting medical conditions and how they react to the disease and the treatment that are the unknown in Terry's situation. The drug therapy that he will start soon is known to cause damage to lungs and kidneys. With the emphysema and CKD that he has they have started him on half of the lowest dosage for one month. The drug will not cure the dementia but should make the violent outbursts and memory loss not so noticeable.
More to come as I continue to research. right now he is not asking any questions and seems fine with the diagnosis. I pray he can stay in his contented state.
Friday, August 1, 2014
Diagnosis
The trip to the VA this morning was informative. We met with two doctors and they reviewed the tests done in the spring. They then performed some new cognitive tests and motor skills tests. The findings are that Terry has Lewy body disease. I learned today that it is OK for him to sit and watch his game shows, that is what makes him happy. He has difficulty handling much more than that so leave him to it. This will be long stuggle and we will have to be patient. Patience is not a virtue I have but I shall try. I also learned that it is OK for me to live my life, I will carry on and do for him what I can but I will live MY life.
Symptoms of Lewy body disease
People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:
- Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
- Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
- Visual hallucinations, usually occurring early on. Delusions may be common too.
It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.
Treatment
Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):
- Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease.
- Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though.
- Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning.
Thursday, July 31, 2014
July 31, 2014
Tomorrow morning I take Terry to VA to have a meeting with the Nuerologist to finally find out what the tests done in May will show. It is hard to think that they will have much to say that I don't already know, the tests were taken so long ago that I don't think they will be able to tell us much.
I have seen more changes in Terry in the months since the tests were taken. His moods are more erratic than ever. Other people have begun to notice now. Some times I hear him talk to people and I have to wonder "Who is this man? When did that happen? Are you kidding me?"
A couple of months ago he called and talked to a cousin that he had not talked to in about six years. Shortly after that call the cousin called me to ask if Terry was OK. He was very concerned about things that Terry talked about, the memories were just not right.
We lost Betty Jo, his father's long time girl friend, and that has been a devastating blow to all of us. None of the family wanted Dad to be alone so I graciously offered for Terry to go north to help Dad so he would not be alone. I found that I was happy to be alone, sad to say but true. It was a relief to have time alone in the house, to answer the phone and not have to answer who it was. To be able to go outside with out having to explain why. It is hard to explain but it was nice not to be judged or questioned about my activities. The dog was even starting to like me! I even had her potty trained while he was gone.
It turns out that he was not enough help to his Dad, his younger sister told me Terry was not capable of taking care of him. She brought Dad to her house in Pinckney and so now Terry is home again. Back to the couch. He has started going for walks a lot. He wears a pedometer and tries to walk 10,000 steps or more a day. He has a membership to the gym that we pay for each month but he won't go.
My sister is convinced that he is depressed and needs anti depressants but I don't really think that is the case at all. I will try to ask the doctor tomorrow.
Recently he went out to buy some D batteries that he wanted. He came back with something else but no batteries. He went back out, again came home with no batteries, repeat. Finally, trip four he came home with the D batteries.
When talking with his brother in law that rode up north with him I found out that he got lost going to his Dad's house. This is very sad because it is a very uncomplicated drive that we have made several times a year for over thirty years. When ever we go anywhere together I do the driving, first I don't like his driving, second because I don't like his driving! We went to Grand Rapids for my Aunt and Uncles anniversary in June, I drove, he slept the entire drive, both ways! I drove around Grand Rapids looking at homes that had been owned by family members and he was just terribly confused but did not ask why we were driving around. I am quite sure he had no idea that the house I was taking pictures of was the home of my grand parents, he was there many many times in the past but was blank when I pointed it out.
Any way tomorrow will tell...........I hope.
Tomorrow morning I take Terry to VA to have a meeting with the Nuerologist to finally find out what the tests done in May will show. It is hard to think that they will have much to say that I don't already know, the tests were taken so long ago that I don't think they will be able to tell us much.
I have seen more changes in Terry in the months since the tests were taken. His moods are more erratic than ever. Other people have begun to notice now. Some times I hear him talk to people and I have to wonder "Who is this man? When did that happen? Are you kidding me?"
A couple of months ago he called and talked to a cousin that he had not talked to in about six years. Shortly after that call the cousin called me to ask if Terry was OK. He was very concerned about things that Terry talked about, the memories were just not right.
We lost Betty Jo, his father's long time girl friend, and that has been a devastating blow to all of us. None of the family wanted Dad to be alone so I graciously offered for Terry to go north to help Dad so he would not be alone. I found that I was happy to be alone, sad to say but true. It was a relief to have time alone in the house, to answer the phone and not have to answer who it was. To be able to go outside with out having to explain why. It is hard to explain but it was nice not to be judged or questioned about my activities. The dog was even starting to like me! I even had her potty trained while he was gone.
It turns out that he was not enough help to his Dad, his younger sister told me Terry was not capable of taking care of him. She brought Dad to her house in Pinckney and so now Terry is home again. Back to the couch. He has started going for walks a lot. He wears a pedometer and tries to walk 10,000 steps or more a day. He has a membership to the gym that we pay for each month but he won't go.
My sister is convinced that he is depressed and needs anti depressants but I don't really think that is the case at all. I will try to ask the doctor tomorrow.
Recently he went out to buy some D batteries that he wanted. He came back with something else but no batteries. He went back out, again came home with no batteries, repeat. Finally, trip four he came home with the D batteries.
When talking with his brother in law that rode up north with him I found out that he got lost going to his Dad's house. This is very sad because it is a very uncomplicated drive that we have made several times a year for over thirty years. When ever we go anywhere together I do the driving, first I don't like his driving, second because I don't like his driving! We went to Grand Rapids for my Aunt and Uncles anniversary in June, I drove, he slept the entire drive, both ways! I drove around Grand Rapids looking at homes that had been owned by family members and he was just terribly confused but did not ask why we were driving around. I am quite sure he had no idea that the house I was taking pictures of was the home of my grand parents, he was there many many times in the past but was blank when I pointed it out.
Any way tomorrow will tell...........I hope.
Monday, April 7, 2014
tough day
Tough day today. As Terry seems to become more used to his memory issues and his other issues he seems comfortable with doing only what needs to be done. He seems content to sit and watch TV while I am busy with things that need to be done. His attitude is digressing, he snapped at the kids all night on Saturday night when they were here and today we had all four kids for a couple of hours and he complained about everything from the light being on to the kids making noise to touching his apple and just about anything else they did. He was not too happy with me not reacting the same way. At one point our 13 yer old grandson saw me squeezing a stress ball as he said something. Devin and I had a great laugh at that.
Terry shows less and less interest in things, he never did have a hobby but now he seems to have no interest what so ever. He has no tolerance for anything different than his daily routine. Baseball season has started so now he has to watch every game. He doesn't know who is playing most of the time but still he watches.
This is going to be a long journey.............
Terry shows less and less interest in things, he never did have a hobby but now he seems to have no interest what so ever. He has no tolerance for anything different than his daily routine. Baseball season has started so now he has to watch every game. He doesn't know who is playing most of the time but still he watches.
This is going to be a long journey.............
Sunday, February 16, 2014
Good news - no news
We spent the day at the VA hospital in Ann Arbor the other day, a long long day. (I really feel bad for the people that drive long ways to get there and then have to drive back after hours and hours in that place).
We met with hubby's doctor and the only thing we really learned is that he does NOT have Parkinsons, such a major relief after watching the way my Mom and all of us suffered from that. One of my long time friends has had to put her husband in a nursing home because of it. No one wants to have to do that!
He also does NOT have a brain tumor or AZ.
Now we have to wait until the end of May to see the Neurologist to find out just what the heck is going on with the dementia.
One thing I did find out that I am very upset about is that for years he has told them that he drank 12-24 beers a day for over twenty years!!!!!!!!! They have him classified as an alcoholic. He NEVER drank that much, we never had that kind of money and I would have left years ago had that been true. I think when he first told them that it was his macho man stupidity that was speaking. For some reason men like to stretch certain truths to look manly, I think it is absurd!
Anyway, I am now annoyed with him because this is going to cost us money in co-pays.
Now he has to see a hand surgeon about the shaking and a trigger finger.
And he has to go to the kidney doctor and the eye clinic. VA just keeps you coming and going.
We met with hubby's doctor and the only thing we really learned is that he does NOT have Parkinsons, such a major relief after watching the way my Mom and all of us suffered from that. One of my long time friends has had to put her husband in a nursing home because of it. No one wants to have to do that!
He also does NOT have a brain tumor or AZ.
Now we have to wait until the end of May to see the Neurologist to find out just what the heck is going on with the dementia.
One thing I did find out that I am very upset about is that for years he has told them that he drank 12-24 beers a day for over twenty years!!!!!!!!! They have him classified as an alcoholic. He NEVER drank that much, we never had that kind of money and I would have left years ago had that been true. I think when he first told them that it was his macho man stupidity that was speaking. For some reason men like to stretch certain truths to look manly, I think it is absurd!
Anyway, I am now annoyed with him because this is going to cost us money in co-pays.
Now he has to see a hand surgeon about the shaking and a trigger finger.
And he has to go to the kidney doctor and the eye clinic. VA just keeps you coming and going.
Monday, January 20, 2014
new care
Well, here we go for another round. Mom is gone, Dad is gone - now I watch my husband's fight with diabetes take away the man that I married over forty years ago, the father of my two adult children.
His struggle with diabetes has been a long one, largely ignored by him for many years. One year, in fact, he adamantly refused to take any drugs and lied to his doctor, ate anything he felt like eating and drank as much pop as he liked. During that year he passed out at work a few times, was irritable with everyone around him and argumentative about his decision not to control his diabetes.
That was more than ten years ago but the damage was done. At only 64 years of age he has been diagnosed with dementia. I have seen this coming for some time and although not at all happy with the diagnosis I found it to be a validation of what I thought. He has been tested by nuerologists and tomorrow will have a test to see if he has a tumor. The tests are to determine what type of dementia he has, so far it is classified as vascular. This is the second most common type of dementia and the hardest to medicate or control. If the tests determine it to be alzhiemers (which I doubt) he can take some of the drugs that my Mom was able to take, I pray that he does not have the Parkinsons disease that my mother suffered from, we shall see.
Never one to have any hobbies or interests in things around him he now sits in front of the tv for about fifteen hours a day. His main purpose in life seems to be taking care of me, which is fine but not really neccessary. I never set an alarm clock, he makes sure that he knows what time I have to get up each day - sometimes checking with me several times a day. My coffee is always on the table next to my spot on the couch. My car is always warmed up on cold winter mornings. The dishes are washed each day - the sink is not scrubbed nor the counters wiped but there are no dishes in the sink.
I truly wish there was more in his life, that he would/could take true pleasure in things around him. We recently adopted a nine year old Bishon Fries that absolutely adores him. She has been a God send and I am very glad she is here, I forget who rescued who when I see the two of them play together. She doesn't get her feelings hurt when his mood swings turn mean.
Today we had our two grandsons whom he loves very much and our great nephew and he was so crabby I could barely stand it. He can not handle the noise that three young boys make. The change in his routine (watching tv in a quiet house) can be very upsetting to him.
As much as I do understand he does not help the chaos when the boys are here and he makes me angry, some days I just wish he had some place to go or some thing to do out side the house. Most of the time I just try to cherish him and the time we still have.
His struggle with diabetes has been a long one, largely ignored by him for many years. One year, in fact, he adamantly refused to take any drugs and lied to his doctor, ate anything he felt like eating and drank as much pop as he liked. During that year he passed out at work a few times, was irritable with everyone around him and argumentative about his decision not to control his diabetes.
That was more than ten years ago but the damage was done. At only 64 years of age he has been diagnosed with dementia. I have seen this coming for some time and although not at all happy with the diagnosis I found it to be a validation of what I thought. He has been tested by nuerologists and tomorrow will have a test to see if he has a tumor. The tests are to determine what type of dementia he has, so far it is classified as vascular. This is the second most common type of dementia and the hardest to medicate or control. If the tests determine it to be alzhiemers (which I doubt) he can take some of the drugs that my Mom was able to take, I pray that he does not have the Parkinsons disease that my mother suffered from, we shall see.
Never one to have any hobbies or interests in things around him he now sits in front of the tv for about fifteen hours a day. His main purpose in life seems to be taking care of me, which is fine but not really neccessary. I never set an alarm clock, he makes sure that he knows what time I have to get up each day - sometimes checking with me several times a day. My coffee is always on the table next to my spot on the couch. My car is always warmed up on cold winter mornings. The dishes are washed each day - the sink is not scrubbed nor the counters wiped but there are no dishes in the sink.
I truly wish there was more in his life, that he would/could take true pleasure in things around him. We recently adopted a nine year old Bishon Fries that absolutely adores him. She has been a God send and I am very glad she is here, I forget who rescued who when I see the two of them play together. She doesn't get her feelings hurt when his mood swings turn mean.
Today we had our two grandsons whom he loves very much and our great nephew and he was so crabby I could barely stand it. He can not handle the noise that three young boys make. The change in his routine (watching tv in a quiet house) can be very upsetting to him.
As much as I do understand he does not help the chaos when the boys are here and he makes me angry, some days I just wish he had some place to go or some thing to do out side the house. Most of the time I just try to cherish him and the time we still have.
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