In my first Caregiver’s Corner, I mentioned that I would talk about other caregivers and their lives. This tale is one of tragedy beyond belief.
I suppose most of us consider ourselves to be “Teflon coated” in that we believe something bad will not stick to us, but will happen to someone else. Some have said this is what happens with military folks in combat—otherwise they might not be willing to put themselves in harm’s way. It’s always the guys to the right and left of you who are going to get dinged.
In this case, it was not wearing seatbelts that led to a cascade of tragic events. A minister I know, and his wife, were leaving an event in their car when they were involved in a one car accident. The minister survived with minimal injuries; however, his wife suffered a fracture of a cervical vertebra and now is paralyzed from her neck down. She spent many weeks in the hospital but still remains a quadriplegic. Despite months of therapy, very little has changed and the outlook for her is bleak. She requires care around the clock—feeding, bathing, toileting, dressing, transferring—her life is no longer under her control
As you might well imagine, the minister does not have a lot of resources. He is not one of the televangelists or the head of one of the mega-churches with huge amounts of bucks. He is just about as poor as a church mouse. Fortunately, he does have medical coverage through his employer, which includes coverage for his wife. However, I suspect this coverage may well evaporate when he has to retire.
I did not know, but apparently ministers can opt out of paying Social Security and Medicare taxes, but this leaves a big hole in their emergency coverage. Generally speaking, you must have 10 years (40 quarters) of employment where you paid Social Security taxes in order to qualify for Social Security or early Social Security in the event of disability (this is what Carrie has) as well as Medicare. In the disability situation, you become eligible for Medicare after you have been on Disability Social Security for two years. At 55, Carrie is a card carrying Medicare recipient.
In this particular case, neither has the requisite covered quarters and thus many doors that would be open to them are nailed shut. They make just a little too much to qualify for Medicaid as long as she stays in their home. If they would put her into a custodial care facility, they would qualify for Medicaid, the husband could stay in their home and things might be a little better. But they do not want to do this and thus they are in medical limbo.
I know they say Social Security and Medicare are dying on the vine, but I believe that this Nation will resolve this in some fashion. However, there still may be the necessity for some form of “qualification” unless we have universal coverage.
My recommendation for now is to make sure you have the requisite Social Security and Medicare coverage…
Wednesday, May 20, 2009
Saturday, May 16, 2009
Caregiver's Corner No. 3--Driving After a Brain Attack
If you read through the second blog, then you know that folks with aphasia process things very differently than those who have been fortunate enough to not have suffered an event that would leave us with aphasia. It is very important to remember that aphasia does not affect intelligence, it affects your ability to process language in and out and to do other things like numbers manipulation. It can also affect other tasks like driving.
Strokes are often called brain attacks. And that is exactly what they are—your brain has been assaulted like the Normandy beaches on D-Day. As a result, things are jumbled up and processing information in and out or manipulating numbers becomes a labor of love.
As I see it, Carrie now processes things in a very linear fashion. Why? Because she is searching through those jumbled up files to find a word to say or find a word in take it in and use it in the context in which it was presented. Often, when we are speaking, she will tell me to slow down and at other times she spells out words to herself in an effort to recognize the word. At other times when we are watching television and there are printed lines on the screen, it is sometimes necessary to pause the television to allow her time to read whatever has been written. We try to do it that way since we both believe it helps her improve her language skills. But we are talking about driving after a brain attack--remember the analogy of the highway after an earthquake?
Driving again took some time because in September 2007, Carrie had a seizure while we were up in Maine. She had not been driving since she got out of the hospital earlier in the year, but we had plans for her to attend a driver rehabilitation program that had been recommended by her rehabilitation team at INOVA Mount Vernon Rehabilitation Center. The seizure upset all of these plans and required that Carrie wait six more months before she could drive. In March of 2008, she went to the driver rehabilitation program and voila she was cleared to drive again, but only in a car with an automatic transmission. If you asked her why, she will tell you, “Too many things going on with a stick shift car!” And if you remember when you tried to learn to drive a stick shift, you can appreciate what happens when you can only process things in a linear fashion—start the car, push in the clutch, put the car in gear, let out the clutch at the same time you push down on the accelerator. Hopefully, you don’t lope down the road!!! And, then we listen to the radio, talk, eat and do all other kinds of thing that we probably shouldn’t. Well, if you ride with Carrie, you won’t do some of those things. No radio and very little conversation, although the latter has gotten better over time. One day we were going somewhere and Carrie was driving. As usual, I was chattering away like a magpie and out of the corner of her mouth she said very simply, “No talking.” As I said, it has gotten better, but I now try to not initiate a conversation until she says something first. If you know me, you know this is difficult for the chatterbox!
And that is another day as we make this journey…
Strokes are often called brain attacks. And that is exactly what they are—your brain has been assaulted like the Normandy beaches on D-Day. As a result, things are jumbled up and processing information in and out or manipulating numbers becomes a labor of love.
As I see it, Carrie now processes things in a very linear fashion. Why? Because she is searching through those jumbled up files to find a word to say or find a word in take it in and use it in the context in which it was presented. Often, when we are speaking, she will tell me to slow down and at other times she spells out words to herself in an effort to recognize the word. At other times when we are watching television and there are printed lines on the screen, it is sometimes necessary to pause the television to allow her time to read whatever has been written. We try to do it that way since we both believe it helps her improve her language skills. But we are talking about driving after a brain attack--remember the analogy of the highway after an earthquake?
Driving again took some time because in September 2007, Carrie had a seizure while we were up in Maine. She had not been driving since she got out of the hospital earlier in the year, but we had plans for her to attend a driver rehabilitation program that had been recommended by her rehabilitation team at INOVA Mount Vernon Rehabilitation Center. The seizure upset all of these plans and required that Carrie wait six more months before she could drive. In March of 2008, she went to the driver rehabilitation program and voila she was cleared to drive again, but only in a car with an automatic transmission. If you asked her why, she will tell you, “Too many things going on with a stick shift car!” And if you remember when you tried to learn to drive a stick shift, you can appreciate what happens when you can only process things in a linear fashion—start the car, push in the clutch, put the car in gear, let out the clutch at the same time you push down on the accelerator. Hopefully, you don’t lope down the road!!! And, then we listen to the radio, talk, eat and do all other kinds of thing that we probably shouldn’t. Well, if you ride with Carrie, you won’t do some of those things. No radio and very little conversation, although the latter has gotten better over time. One day we were going somewhere and Carrie was driving. As usual, I was chattering away like a magpie and out of the corner of her mouth she said very simply, “No talking.” As I said, it has gotten better, but I now try to not initiate a conversation until she says something first. If you know me, you know this is difficult for the chatterbox!
And that is another day as we make this journey…
What happened to the American Dream?
Evidence of the current downturn in the economy is all around us. Drive through any neighborhood and you will find homes with “For Sale” signs that also note it is a “Foreclosure”. Everyday, television reporters and newspapers provide the latest tally of the unemployed. Today brought the news that the Dodge dealership in Manassas is to be one of the victims of the Chrysler bankruptcy. There have been four foreclosures in my own neighborhood—one home originally sold for $850,000—the owner simply walked away. One neighbor moved out in the middle of the night—just left. Several other families in the area are “upside down” with their mortgage after the last tax reassessment. As I said in the beginning, evidence of the current downturn in the economy is all around us. I guess the reality of the whole thing came home just the other day when we went to the dry cleaning shop we have used for perhaps 20 years. A Korean couple, a man and his wife, who worked six days a week from early morning to late at night, owned this shop. They’re immigrants, coming here to make a new home and give their children opportunities they could not have in their native country. When we talked in, it was easy to see the husband was very upset, almost to the point of tears. When we asked what was wrong, he said they were closing the business. Their landlord had raised the rent, their taxes and utilities were going up and the boiler that provided steam for their presses needed to be replaced. There was no way they could continue and make a living. With sad eyes, the owner looked at us and asked, “What happened to the American dream?”
Tuesday, May 12, 2009
Caregiver's Corner No. 2
In order to understand life after a stroke, at least for us, you need to understand about aphasia. Here is what the National Stroke Association says about aphasia.
APHASIA
Aphasia is an impairment of language the ability to use and comprehend words. It is a common problem for many stroke survivors. Having aphasia may make it hard to:
· Talk
· Understand what other people say
· Read
· Write
· Use numbers and do calculations
No two people experience aphasia the same way. Some people have different symptoms than others. Some have mild problems, while others experience more severe problems.
Stroke-related aphasia typically improves within the first weeks, and continued improvements occur for months and even years. Have patience, a positive attitude and the willingness to learn about aphasia and the resources available. It is important to remind yourself that recovery can continue years after the stroke.
The goal for people with aphasia is to improve their ability to communicate with other people. This is done by getting back some language skills and learning new ways of getting a message across when needed.
What can help:
· Join an aphasia support group to meet and learn from other stroke survivors with aphasia and their families.
· Keep in mind that some days will be better than others. Remember to rest, pace yourself and stay relaxed.
· Most people with aphasia benefit from therapy by a speech and language pathologist. Your doctor can refer you to the appropriate person for your needs.
· Be patient; most survivors need time to adjust to the major life changes brought about by the stroke before they can maximize their therapy.
· Remember that while aphasia can make communication difficult, it should not affect the ability to think clearly.
· Emotional responses such as anger, distress, depression, anxiety, low self-esteem and dependency are common; that’s why counseling is sometimes recommended.
SymptomsAccording to the Aphasia Handbook by the National Aphasia Association, someone may experience one or more of the following problems:
TALKING
· I find it difficult to talk at all.
· I struggle to get every word out.
· I miss small words, like to and of.
· I can't find the exact words I want.
· I talk a lot. But what I say is difficult to follow.
· I use strange words which sound foreign or nonsensical.
· I get stuck on certain words or phrases.
· I think I am talking perfectly well but I am not.
LISTENING AND UNDERSTANDING
I can hear, but:
· I have difficulty listening, and understanding what other people say.
· I have difficulty understanding some words.
· I have difficulty following conversations.
I can mostly follow what others say, but this gets difficult:
· In a crowded or noisy place.
· When I'm tired or anxious.
· If the other person talks too quickly.
· Or doesn't make it clear what the topic of conversation is.
· Or uses complicated words or long sentences.
· Or if several people are involved in the conversation.
READING
I can see, but:
· I find it difficult to understand what I try to read.
· I can read some words, but nothing too long or complicated.
· I can read most things, but get stuck when I have to take in details.
WRITING
· I can't spell.
· I find it hard to plan or organize what I want to write.
· I have difficulty making grammatical sentences.
· I can't write at all.
· I can write some letters of the word I want but not the whole word.
USING NUMBERS
· I can't use numbers and do calculations.
· I make mistakes with time, and money.
· I can't write checks or figure out my bills.
· I get stuck figuring out my change.
Suggestions for communicating with a person who has aphasia
· Treat the person with aphasia as an intelligent adult; aphasia does not typically affect thinking skills.
· Speak simply, clearly and slowly.
· Be sure the person with aphasia understood you.
· Use props to make conversation easier (photos, maps).
· Draw or write things down on paper.
· Be patient. Take one idea at a time.
· Try different ways to get your message across.
If you got this far, it should help as we go along on this journey. What I tell people about aphasia is this--imagine you are driving down the road one day, a road you travel on every day and one morning you go to drive down that road and you discover there was an earthquake overnight. The road may be passable, but there will be many obstacles in your way. You will get to your destination eventually, if you don't lose your way, but it will take time and a lot of effort.
Another way to think about this is to imagine file drawers in your office. This may be a little old fashioned since many people have all their files stored electronically, but stick with me for a second. In these drawers are thousands of files that you have gathered over the years. All the files are properly labeled and filed in a system you have developed over these same years. One morning you come to the office and discover that someone has ransacked your office and scattered all your files all over the place. You need to find the file labeled CAN OPENER. You know that file is in there but finding it may take a while. In the process of looking for the file, you find one labeled PLIERS. In your frustration, you decide that this file will do the trick. It's not quite what you are looking for, but it is a tool after all, just like the CAN OPENER is a tool, so maybe it will work for your purposes, at least in the short run.
That is what happened to Carrie one day. She took a CAN OPENER out of the dish drainer and asked, "What do you want me to do with this pair of PLIERS?" She knew it was a tool, but just couldn't find the name of the tool. I told her that what she had in her hand was not a pair of pliers and asked her, "What do you do with that?" "Open cans", she replied. "So what would you call that then?" "A CAN OPENER" she said triumphantly!
And that is how it goes with aphasia. More on the subject as we go along...
APHASIA
Aphasia is an impairment of language the ability to use and comprehend words. It is a common problem for many stroke survivors. Having aphasia may make it hard to:
· Talk
· Understand what other people say
· Read
· Write
· Use numbers and do calculations
No two people experience aphasia the same way. Some people have different symptoms than others. Some have mild problems, while others experience more severe problems.
Stroke-related aphasia typically improves within the first weeks, and continued improvements occur for months and even years. Have patience, a positive attitude and the willingness to learn about aphasia and the resources available. It is important to remind yourself that recovery can continue years after the stroke.
The goal for people with aphasia is to improve their ability to communicate with other people. This is done by getting back some language skills and learning new ways of getting a message across when needed.
What can help:
· Join an aphasia support group to meet and learn from other stroke survivors with aphasia and their families.
· Keep in mind that some days will be better than others. Remember to rest, pace yourself and stay relaxed.
· Most people with aphasia benefit from therapy by a speech and language pathologist. Your doctor can refer you to the appropriate person for your needs.
· Be patient; most survivors need time to adjust to the major life changes brought about by the stroke before they can maximize their therapy.
· Remember that while aphasia can make communication difficult, it should not affect the ability to think clearly.
· Emotional responses such as anger, distress, depression, anxiety, low self-esteem and dependency are common; that’s why counseling is sometimes recommended.
SymptomsAccording to the Aphasia Handbook by the National Aphasia Association, someone may experience one or more of the following problems:
TALKING
· I find it difficult to talk at all.
· I struggle to get every word out.
· I miss small words, like to and of.
· I can't find the exact words I want.
· I talk a lot. But what I say is difficult to follow.
· I use strange words which sound foreign or nonsensical.
· I get stuck on certain words or phrases.
· I think I am talking perfectly well but I am not.
LISTENING AND UNDERSTANDING
I can hear, but:
· I have difficulty listening, and understanding what other people say.
· I have difficulty understanding some words.
· I have difficulty following conversations.
I can mostly follow what others say, but this gets difficult:
· In a crowded or noisy place.
· When I'm tired or anxious.
· If the other person talks too quickly.
· Or doesn't make it clear what the topic of conversation is.
· Or uses complicated words or long sentences.
· Or if several people are involved in the conversation.
READING
I can see, but:
· I find it difficult to understand what I try to read.
· I can read some words, but nothing too long or complicated.
· I can read most things, but get stuck when I have to take in details.
WRITING
· I can't spell.
· I find it hard to plan or organize what I want to write.
· I have difficulty making grammatical sentences.
· I can't write at all.
· I can write some letters of the word I want but not the whole word.
USING NUMBERS
· I can't use numbers and do calculations.
· I make mistakes with time, and money.
· I can't write checks or figure out my bills.
· I get stuck figuring out my change.
Suggestions for communicating with a person who has aphasia
· Treat the person with aphasia as an intelligent adult; aphasia does not typically affect thinking skills.
· Speak simply, clearly and slowly.
· Be sure the person with aphasia understood you.
· Use props to make conversation easier (photos, maps).
· Draw or write things down on paper.
· Be patient. Take one idea at a time.
· Try different ways to get your message across.
If you got this far, it should help as we go along on this journey. What I tell people about aphasia is this--imagine you are driving down the road one day, a road you travel on every day and one morning you go to drive down that road and you discover there was an earthquake overnight. The road may be passable, but there will be many obstacles in your way. You will get to your destination eventually, if you don't lose your way, but it will take time and a lot of effort.
Another way to think about this is to imagine file drawers in your office. This may be a little old fashioned since many people have all their files stored electronically, but stick with me for a second. In these drawers are thousands of files that you have gathered over the years. All the files are properly labeled and filed in a system you have developed over these same years. One morning you come to the office and discover that someone has ransacked your office and scattered all your files all over the place. You need to find the file labeled CAN OPENER. You know that file is in there but finding it may take a while. In the process of looking for the file, you find one labeled PLIERS. In your frustration, you decide that this file will do the trick. It's not quite what you are looking for, but it is a tool after all, just like the CAN OPENER is a tool, so maybe it will work for your purposes, at least in the short run.
That is what happened to Carrie one day. She took a CAN OPENER out of the dish drainer and asked, "What do you want me to do with this pair of PLIERS?" She knew it was a tool, but just couldn't find the name of the tool. I told her that what she had in her hand was not a pair of pliers and asked her, "What do you do with that?" "Open cans", she replied. "So what would you call that then?" "A CAN OPENER" she said triumphantly!
And that is how it goes with aphasia. More on the subject as we go along...
Monday, May 11, 2009
Life as a caregiver
I am trying to decide about writing on the life of a caregiver. My life and the life of my bride Carrie were irreversibly changed when she tumbled literally head over heels down the stairs in September of 2006. This single event led to a cascade of events that have altered our lives more than we ever would have dreamed possible. I somehow think I need to share what has occured and is still going on in our lives as I think it it important for others to know that life can change in an instant and you are suddenly faced with changes you have never even begun to think of.
I suspect this is more true for men than for women/husbands than wives. Most men know full well that they will probably leave this vale of tears long before their wives. And they inately know, but won't admit, that their wives will probablyh be caring for them in their twilight years. But sometimes fate deals us a different hand and our roles are reversed. Oh, it doesn't necessarily mean that you are bound hand and foot, 24 hours a day, but you never let yourself be far away from the person for whom you are the care giver. Why? I am not quite sure, but I think you believe that no one else can do the job as well as you can. At least I feel that way.
As I work on this, I will try to share what goes on in our daily lives, but I will also try to tell you of events of others I know who have suddenly had the tables turned. I am hoping that I can convince Carrie to start a blog in which she will share her feelings about her post-stroke life. She is a very creative woman and I know that she must have many days of frustration that are fueled by her aphasia. She fully recognizes that this is a problem--so much so that she is hesitant about socializing because of her stammering speech. Does she stammer all the time? No. But when she is under pressure or when there is too much going on around her, she has problems finding the right words. I believe she has a great story to tell and that her story can be very inspiring to other stroke victims. So I am going to continue to encourage her to share her story, her feelings, her frustrations in the hopes that other stroke victims will profit from what she is experiencing.
Until then...
I suspect this is more true for men than for women/husbands than wives. Most men know full well that they will probably leave this vale of tears long before their wives. And they inately know, but won't admit, that their wives will probablyh be caring for them in their twilight years. But sometimes fate deals us a different hand and our roles are reversed. Oh, it doesn't necessarily mean that you are bound hand and foot, 24 hours a day, but you never let yourself be far away from the person for whom you are the care giver. Why? I am not quite sure, but I think you believe that no one else can do the job as well as you can. At least I feel that way.
As I work on this, I will try to share what goes on in our daily lives, but I will also try to tell you of events of others I know who have suddenly had the tables turned. I am hoping that I can convince Carrie to start a blog in which she will share her feelings about her post-stroke life. She is a very creative woman and I know that she must have many days of frustration that are fueled by her aphasia. She fully recognizes that this is a problem--so much so that she is hesitant about socializing because of her stammering speech. Does she stammer all the time? No. But when she is under pressure or when there is too much going on around her, she has problems finding the right words. I believe she has a great story to tell and that her story can be very inspiring to other stroke victims. So I am going to continue to encourage her to share her story, her feelings, her frustrations in the hopes that other stroke victims will profit from what she is experiencing.
Until then...
My Visits to the Chiropractor
Well, I have not written since I started seeing the chiropractor and so it is time to say a few things.
My visits there have been helpful, but I am still having some problems with numbness in my right foot. Will that ever go away? I suspect not without some kind of surgery, which I still don't want. We will just have to see what happens over the next few weeks/months.
My visits there have been helpful, but I am still having some problems with numbness in my right foot. Will that ever go away? I suspect not without some kind of surgery, which I still don't want. We will just have to see what happens over the next few weeks/months.
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