Post by norbert1 on Jul 24, 2007 10:26:33 GMT -5
Caregiver Dementia (CD)
This writing attributed to Edyth Ann Knox
Caregiver for her mother-in-law, Millie and father, Tex, both with AD
In the past few months you may have heard me or someone else mention the term "CD". Many of you, who are not familiar with the acronym, may be wondering what CD stands for. Well, it means Caregivers Dementia.
We started using this term in our Virtual Carer Support chat room in 1997. I am not really sure which one of us actually came up with the term. Regardless, it is one of the things that keeps coming up whenever you have two or more caregivers under stress talking to one another.
It is not unusual for the caregiver of someone with dementia to feel like they too are living in a fog. They may have trouble remembering names or forgetting (mid-task) what they are doing. Let me assure you this is perfectly normal caregiver behavior. The condition is not the onset of AD, but more likely due to the exceptional, yet unrealized, stress level, involving loss of sleep and self neglect, typical of caregiving. The moment we realized this, was the moment the term CD was born.
Finally, we, the caregivers, no longer had to worry about showing suspected signs of AD; our condition now had a name. Though, not to be found flipping through the pages of any medical journals, CD is not a chronic or untreatable condition.¾ Yet it is one familiar to many caregivers.¾ And as more caregivers mention it in their support groups, the term seems to be catching on.
"Because I have CD."
Once and for all, it is a great relief to be able to give the over-stressed condition and lagging mental state that we caregivers inevitably experience, a name. We no longer need to wonder if we too are losing our minds. It is very reassuring to know that eventually normalcy will once again return.
We no longer have to be concerned about forgetting a name or pouring our coffee into the sugar bowl, instead of our coffee cup. And if I want to sit in the middle of the floor playing jacks or go singing and skipping down the street, I can, ... because "I am suffering from CD. Now when I am tired, grumpy or tending to over react, I have a reason. It's okay to go to bed, because I have CD. Finally, I can actually let others care for my loved one (LO), because I AM SUFFERING FROM CD (and believe me this is very important).
The Early Stages Not to Worry
Treatment for CD depends on what stage of CD you are in. In the early stages taking time to get some extra sleep and eating a little better may be enough. You may feel a little tired or need to pause for a moment to recall a fact, name or what you are doing, but you are still able to remember it. In other words, you are still in a relative good state, just feeling little slower.
The Middle Stages When you beginning to think it's AD
The middle or moderate stage may require more attention to remedy. By now your concentration may not be as good and you may notice that you are more easily distracted. You may also totally forget a name, place or what you are doing and now not remember it, even after a few minutes. This is where you may begin to wonder if you are, in fact, developing AD.
Once your reach this advanced stage, you need to take steps to treat the condition. This may include taking an evening off or even renting a room for the night. Perhaps you should take heed and be careful that you are eating right. And it might not hurt to consider drinking a nutritional supplement, like Instant Breakfast, along with your LO.
At this stage it is a good idea to step back and find yourself a quiet corner. Designate it as "off limits to everyone else. This is your respite zone and when you are there, you are not to be disturbed at least for a half an hour. Take a good look at the burdens you are really carrying and take steps to lighten your load. Be good to yourself, after all, if something happens to you, who will care for your loved one? (Two resources are Solutions to Living with Alzheimer's and The Respite Zone.)
The Advanced Stages - Time to Take a Stand
Failing to recognize and treat the middle stages of CD can lead to the more advanced stages. At this time you may really believe that you are developing AD. You may no longer be able to concentrate on anything; it begins to feel like there is fog all around you. You may find yourself forgetting if you are putting food out for the cat or setting the table for dinner. You become very moody and feel like you may be losing your mind. At this point you may even be physically breaking down, becoming sick, and not even realizing it.
Now you need to take stronger measures to care for yourself. You definitely need a break, for the well being of both you and your loved one. If this sounds familiar, you need to re-evaluate your caregiving situation. It may also be time to consider other care arrangements for your LO.
CD has now become very real and no longer funny. Unrecognized and untreated it can become serious. But when you acknowledge it and treat it, you can also recover. Give yourself permission to be human - to forget people's names or even your own for that matter; to be a little off center (as long as you are not jumping down everyone's throat), and to remind yourself where you are. Give yourself permission to enjoy life and let things go, as long as you remember to take care of yourself.
I want to make it very clear that I am not a doctor, nurse or medical professional of any kind. I cannot make an official diagnosis or prescribe treatment. My knowledge comes from experience. My hope is that some day someone will realize that our loved ones with AD are not the only victims of the disease, both emotionally and medically. There really is something called CD. It has real symptoms and warrants real treatment.
Ironically, treating the caregiver, may in turn also benefit the person with AD. I believe that paying more attention to the caregiver may even possibly reduce the need for some of the medications given to the patient. Logic tells me that a healthier caregiver will be better able to deal with the AD behaviors of their LOs and allow them to make better decisions. I would also like to point out that this does not only apply to at-home caregivers, but also healthcare professionals and nursing home staff alike.
----------------------
Here's another article about caregiving by Edyth Ann Knox
THE CAREGIVER'S STAGES by Edyth Ann Knox
1. Everything is all right Stage:
They are just getting a little funny in their old age Stage
They just wants attention Stage
It will pass Stage
I am getting tired of running over to their rescue Stage
2. Oh My God!! Something is wrong with Loved One Stage:
I must run them to the Dr. to find out what is wrong Stage
No, they can not have Alz. Stage
The Dr. must be wrong Stage
I must take them to the world's best Dr. because he/she will know how to "cure" them Stage
You must have a magic cure for my Loved One Stage
This new drug must be the cure Stage
Herbs and diet will cure Stage
3. What do I do now Stage:
-> If I love them enough they will do better Stage
-> Where is my magic wand so I can make everything all better Stage
I have to make them realize the reality Stage
Why doesn't everyone see what I see Stage
I must make the their family see reality Stage
4. I can't take any more Stage:
Why me and why my Loved One Stage
Everyone takes me for granted Stage
I am going to straighten them all out Stage
They are driving me up the wall with the same story and stupid question Stage
I can do this all by myself Stage
I don't want to be touched Stage
I am hiding Stage
I have to sit under the table to make a phone call Stage
No one loves me Stage
Stop the World and let me off Stage
Just take me out to Dinner Stage
5. I am Wonder Woman/Superman Stage:
No one cares like me Stage
Everything is the spouses fault Stage
Where did everyone go Stage
I know who my friends and caring family are Stage
6. Am I developing Alz. Stage:
I am not getting AD. I am developing CD (Caregivers Dementia) Stage
I do not know what day this is Stage (for in home care givers)
I do not know how to talk to other people Stage
7. Oh No! They are nearing the End Stage Stage:
What else does life have in store for me Stage
I do not think I can face what comes next Stage
Am I doing to much, am I making them hang on too long Stage
I don't want to let go of them Stage
-------------------
I want to add some thoughts about this situation.
Many Caregivers complain of memory problems and wonder if they are catching the dementia of their LOs. The typical memory problem is walking into a room and forgetting why they came there, what were they going to get. Or they may have problems with word recall.
You should understand that there are three things that affect memory in healthy people:
Depression --- Stress --- Lack of Sleep
Anyone with a slight familiarity with caregiving realizes, caregivers are susceptable to all three of these issues.
These three factors are professionally acknowledged to contribute to poor memory in normal.
Additionally, there are two factors that can interfere with memory.
Being overwelmed --
All three of these are areas that caregivers experience problems. Also, being distracted seems to cause such minor memory issues. A similar situation is Momnesia, where a harried, distracted, (and overwelmed) new mother finds it very difficult to remember all the things they need to do in a day, and they forget important stuff. They may forget to pay bills. The sort of stuff they just routinely did at a certain time, they now need to write down to keep it all straight. This is where the person seems to be so overwelmed, that the stuff in memory no longer presents itself at the needed time. This is rather unstructured memory task that may need a calender to keep organized at this stage. Or without a procedure, it is difficult to remember all the stuff that must be taken on a trip to care for the baby.
Coding problems -
One problem, is what psychologists call a coding problem, a phase needed before information even can get to the short term or working memory. In other words, because of frequent distraction, the information is not presented to working memory. Depression, or lack of attention can also contribute to coding failure. Example - A distacted spouse, watching TV, agrees with a "uh huh" yes, to a request to do something, but later does not remember the committment at all. This is a case of distraction, causing the information to not be coded.
You also, cannot discount the effect that aging contributes to slight decreases in spontaneous memory performance.
All caregivers report that after the caregiving is over, these problems with memory glitches go away.
Norbert.
This writing attributed to Edyth Ann Knox
Caregiver for her mother-in-law, Millie and father, Tex, both with AD
In the past few months you may have heard me or someone else mention the term "CD". Many of you, who are not familiar with the acronym, may be wondering what CD stands for. Well, it means Caregivers Dementia.
We started using this term in our Virtual Carer Support chat room in 1997. I am not really sure which one of us actually came up with the term. Regardless, it is one of the things that keeps coming up whenever you have two or more caregivers under stress talking to one another.
It is not unusual for the caregiver of someone with dementia to feel like they too are living in a fog. They may have trouble remembering names or forgetting (mid-task) what they are doing. Let me assure you this is perfectly normal caregiver behavior. The condition is not the onset of AD, but more likely due to the exceptional, yet unrealized, stress level, involving loss of sleep and self neglect, typical of caregiving. The moment we realized this, was the moment the term CD was born.
Finally, we, the caregivers, no longer had to worry about showing suspected signs of AD; our condition now had a name. Though, not to be found flipping through the pages of any medical journals, CD is not a chronic or untreatable condition.¾ Yet it is one familiar to many caregivers.¾ And as more caregivers mention it in their support groups, the term seems to be catching on.
"Because I have CD."
Once and for all, it is a great relief to be able to give the over-stressed condition and lagging mental state that we caregivers inevitably experience, a name. We no longer need to wonder if we too are losing our minds. It is very reassuring to know that eventually normalcy will once again return.
We no longer have to be concerned about forgetting a name or pouring our coffee into the sugar bowl, instead of our coffee cup. And if I want to sit in the middle of the floor playing jacks or go singing and skipping down the street, I can, ... because "I am suffering from CD. Now when I am tired, grumpy or tending to over react, I have a reason. It's okay to go to bed, because I have CD. Finally, I can actually let others care for my loved one (LO), because I AM SUFFERING FROM CD (and believe me this is very important).
The Early Stages Not to Worry
Treatment for CD depends on what stage of CD you are in. In the early stages taking time to get some extra sleep and eating a little better may be enough. You may feel a little tired or need to pause for a moment to recall a fact, name or what you are doing, but you are still able to remember it. In other words, you are still in a relative good state, just feeling little slower.
The Middle Stages When you beginning to think it's AD
The middle or moderate stage may require more attention to remedy. By now your concentration may not be as good and you may notice that you are more easily distracted. You may also totally forget a name, place or what you are doing and now not remember it, even after a few minutes. This is where you may begin to wonder if you are, in fact, developing AD.
Once your reach this advanced stage, you need to take steps to treat the condition. This may include taking an evening off or even renting a room for the night. Perhaps you should take heed and be careful that you are eating right. And it might not hurt to consider drinking a nutritional supplement, like Instant Breakfast, along with your LO.
At this stage it is a good idea to step back and find yourself a quiet corner. Designate it as "off limits to everyone else. This is your respite zone and when you are there, you are not to be disturbed at least for a half an hour. Take a good look at the burdens you are really carrying and take steps to lighten your load. Be good to yourself, after all, if something happens to you, who will care for your loved one? (Two resources are Solutions to Living with Alzheimer's and The Respite Zone.)
The Advanced Stages - Time to Take a Stand
Failing to recognize and treat the middle stages of CD can lead to the more advanced stages. At this time you may really believe that you are developing AD. You may no longer be able to concentrate on anything; it begins to feel like there is fog all around you. You may find yourself forgetting if you are putting food out for the cat or setting the table for dinner. You become very moody and feel like you may be losing your mind. At this point you may even be physically breaking down, becoming sick, and not even realizing it.
Now you need to take stronger measures to care for yourself. You definitely need a break, for the well being of both you and your loved one. If this sounds familiar, you need to re-evaluate your caregiving situation. It may also be time to consider other care arrangements for your LO.
CD has now become very real and no longer funny. Unrecognized and untreated it can become serious. But when you acknowledge it and treat it, you can also recover. Give yourself permission to be human - to forget people's names or even your own for that matter; to be a little off center (as long as you are not jumping down everyone's throat), and to remind yourself where you are. Give yourself permission to enjoy life and let things go, as long as you remember to take care of yourself.
I want to make it very clear that I am not a doctor, nurse or medical professional of any kind. I cannot make an official diagnosis or prescribe treatment. My knowledge comes from experience. My hope is that some day someone will realize that our loved ones with AD are not the only victims of the disease, both emotionally and medically. There really is something called CD. It has real symptoms and warrants real treatment.
Ironically, treating the caregiver, may in turn also benefit the person with AD. I believe that paying more attention to the caregiver may even possibly reduce the need for some of the medications given to the patient. Logic tells me that a healthier caregiver will be better able to deal with the AD behaviors of their LOs and allow them to make better decisions. I would also like to point out that this does not only apply to at-home caregivers, but also healthcare professionals and nursing home staff alike.
----------------------
Here's another article about caregiving by Edyth Ann Knox
THE CAREGIVER'S STAGES by Edyth Ann Knox
1. Everything is all right Stage:
They are just getting a little funny in their old age Stage
They just wants attention Stage
It will pass Stage
I am getting tired of running over to their rescue Stage
2. Oh My God!! Something is wrong with Loved One Stage:
I must run them to the Dr. to find out what is wrong Stage
No, they can not have Alz. Stage
The Dr. must be wrong Stage
I must take them to the world's best Dr. because he/she will know how to "cure" them Stage
You must have a magic cure for my Loved One Stage
This new drug must be the cure Stage
Herbs and diet will cure Stage
3. What do I do now Stage:
-> If I love them enough they will do better Stage
-> Where is my magic wand so I can make everything all better Stage
I have to make them realize the reality Stage
Why doesn't everyone see what I see Stage
I must make the their family see reality Stage
4. I can't take any more Stage:
Why me and why my Loved One Stage
Everyone takes me for granted Stage
I am going to straighten them all out Stage
They are driving me up the wall with the same story and stupid question Stage
I can do this all by myself Stage
I don't want to be touched Stage
I am hiding Stage
I have to sit under the table to make a phone call Stage
No one loves me Stage
Stop the World and let me off Stage
Just take me out to Dinner Stage
5. I am Wonder Woman/Superman Stage:
No one cares like me Stage
Everything is the spouses fault Stage
Where did everyone go Stage
I know who my friends and caring family are Stage
6. Am I developing Alz. Stage:
I am not getting AD. I am developing CD (Caregivers Dementia) Stage
I do not know what day this is Stage (for in home care givers)
I do not know how to talk to other people Stage
7. Oh No! They are nearing the End Stage Stage:
What else does life have in store for me Stage
I do not think I can face what comes next Stage
Am I doing to much, am I making them hang on too long Stage
I don't want to let go of them Stage
-------------------
I want to add some thoughts about this situation.
Many Caregivers complain of memory problems and wonder if they are catching the dementia of their LOs. The typical memory problem is walking into a room and forgetting why they came there, what were they going to get. Or they may have problems with word recall.
You should understand that there are three things that affect memory in healthy people:
Depression --- Stress --- Lack of Sleep
Anyone with a slight familiarity with caregiving realizes, caregivers are susceptable to all three of these issues.
These three factors are professionally acknowledged to contribute to poor memory in normal.
Additionally, there are two factors that can interfere with memory.
Being overwelmed --
All three of these are areas that caregivers experience problems. Also, being distracted seems to cause such minor memory issues. A similar situation is Momnesia, where a harried, distracted, (and overwelmed) new mother finds it very difficult to remember all the things they need to do in a day, and they forget important stuff. They may forget to pay bills. The sort of stuff they just routinely did at a certain time, they now need to write down to keep it all straight. This is where the person seems to be so overwelmed, that the stuff in memory no longer presents itself at the needed time. This is rather unstructured memory task that may need a calender to keep organized at this stage. Or without a procedure, it is difficult to remember all the stuff that must be taken on a trip to care for the baby.
Coding problems -
One problem, is what psychologists call a coding problem, a phase needed before information even can get to the short term or working memory. In other words, because of frequent distraction, the information is not presented to working memory. Depression, or lack of attention can also contribute to coding failure. Example - A distacted spouse, watching TV, agrees with a "uh huh" yes, to a request to do something, but later does not remember the committment at all. This is a case of distraction, causing the information to not be coded.
You also, cannot discount the effect that aging contributes to slight decreases in spontaneous memory performance.
All caregivers report that after the caregiving is over, these problems with memory glitches go away.
Norbert.