To continue our topic about those of you who have a loved one with aphasia.... I am working with folks who come to the Aphasia Center program, as well as with the Suncoast Aphasia Support Group (a wonderful group of people whom I must thank for helping me get our support group going) on the caregiver project. When I have a person with aphasia who comes to the intensive aphasia program, there are always caregiver or spouse dynamics that must be worked through to make progress with the aphasia. Frequently anger or grieving is still present, and there is resentment amongst family members and the person with aphasia. These negative emotions may not be obvious on the surface, but they can have a huge impact on progress at the program or on the relationship as a whole. Persons who suffer a stroke and have aphasia are twice as likely to get divorced as someone who just has a stroke without aphasia. This tells us that aphasia is a stressful occurrence for everyone involved!
So, because I work with families who have a loved one with aphasia, I see many of the same issues occurring over and over again. It seems very few families are given hope, advice, useful information, or resources when they leave the hospital. Often I am the first person in years to actually explain aphasia or apraxia to them in a meaningful way. I may be the first person who helps the families understand all of the aspects of aphasia. A family recently wondered why the person with aphasia didn't just point to their boat and make cleaning gestures if he wanted to have the boat cleaned. Instead, he started looking through the phone book. The family finally guessed his intent, but was expecting more information. Typically, the person with aphasia doesn't know that they aren't giving you enough information--we are all expected to play 20+ questions without clues! The person with aphasia has problems with speech (in some cases) AND language, so they cannot simply play charades effectively and act out what they want as though only the speech is affected.
In an effort to help more caregivers and persons living with aphasia understand the disorder, provide hope and inspiration, and show that you are not alone (although it may feel that way), we are making a caregiver manual. This manual will have stories of couples and families and their journeys through the unfamiliar landscape of aphasia. If you'd like to contribute your story, please email me at dr.lbtobin@gmail.com and I will send you some questions to help you think about your story while you write it. My hope is that caregivers can then read these stories and identify with someone in the book who may have a similar situation. Send me your ideas!
Dr. Lori
Sunday, May 3, 2009
Sunday, April 19, 2009
Aphasia caregivers
Caregivers for persons living with aphasia (PLWA) are often misinformed, confused, scared, and overwhelmed when their loved one experiences a stroke with aphasia. I've found that not many therapists or doctors give the caregivers the right kind of information--what is it? Will it get better? Who can I talk to? Does anyone else have it? and so on. Shockingly few medical personnel will give information about aphasia support groups or the National Aphasia Association website. Very few couples are given encouragement to continue therapies after the insurance runs out. No one is given hope for progress, it seems. If you have hope, you will often be told that you are in denial about your spouse's capabilities.
Frequently, I will see older couples who have been married for 40+ years, in which the husband now has aphasia and the wife is now the primary caregiver. Often, but not always, the husband was the main breadwinner, the finance planner, the leader in many different areas. Now, the husband has aphasia, and the caregiver is left to figure out how to take care of her husband, manage the household and finances, get him to appointments and therapy, and possibly perform nursing duties for personal care. No one asked for this to happen, and now the dynamics of the entire family have changed. The PLWA can often no longer participate in interests he had before the stroke, and for lack of something better to do, will follow his spouse around the house, waiting for some interaction. Friends are often embarrassed or uncertain about the PLWA and won't visit as often. The spouse is now left with many burdens--physical, mental, social.....
you are now the wife, caregiver, nurse, chauffeur, banker, shopper, maid, and sometimes therapist. Who wouldn't feel some stress or pressure in this situation?
I will sometimes have caregivers that are upset because they want to help their spouses with speech therapy, but the husband does not want them to do this. Of the many roles you may now have, your husband has chosen: wife! Be glad, I will tell them. I know you want to help, but it is a two-way street, each participant must be willing to let that other person have more than one role. If one participant is not 100% willing, then so be it! Only the PLWA can decide if he/she wants to get better and who will help with that. You don't need to carry all of the burden--there are people out there, such as myself, who have gone to school for a long time to do this. We aren't related to you, we have no personal history or previous roles with you, and our role is therapist, period. I'm more than happy to help someone become the therapist if that's what both persons desire, but I won't put more burden on either one of you if you don't choose it. I won't automatically assume that since you are the primary caregiver, you should be jumping up and down to get into having therapy at home with your spouse after you've been doing the physical therapy and other exercises, as well as your daily household and work schedules. You have the right to say, "No, I don't want to do this". By letting the therapists push you into this position in which you feel obligated to perform, you are adding stress to an already stressful situation. So you will either say you'll do it but won't, or you'll do it but resent it, or perhaps you'll be happy to do it. There are several possible scenarios. Yes, it's better if there is someone else who will help so that progress can be made faster--does it have to be you? No. Can your children, students, neighbors, church, or other volunteers help out in this area? You still have a life, don't let guilt make you miserable--the world's fate does not hang on your shoulders. Skipping exercises due to real life a few times a week doesn't kill anyone.
The only critical piece is carry-over from therapy to home life, and I find that not many therapists know how to educate caregivers appropriately about carry-over. Since PLWA spend 6-weeks at our facility, carry-over after the session is crucial, but by that time everyone should feel educated and entirely comfortable about communication.
I am putting together a manual for caregivers and I could use your stories for it. Tell me your story--we'll talk about it next time......
Frequently, I will see older couples who have been married for 40+ years, in which the husband now has aphasia and the wife is now the primary caregiver. Often, but not always, the husband was the main breadwinner, the finance planner, the leader in many different areas. Now, the husband has aphasia, and the caregiver is left to figure out how to take care of her husband, manage the household and finances, get him to appointments and therapy, and possibly perform nursing duties for personal care. No one asked for this to happen, and now the dynamics of the entire family have changed. The PLWA can often no longer participate in interests he had before the stroke, and for lack of something better to do, will follow his spouse around the house, waiting for some interaction. Friends are often embarrassed or uncertain about the PLWA and won't visit as often. The spouse is now left with many burdens--physical, mental, social.....
you are now the wife, caregiver, nurse, chauffeur, banker, shopper, maid, and sometimes therapist. Who wouldn't feel some stress or pressure in this situation?
I will sometimes have caregivers that are upset because they want to help their spouses with speech therapy, but the husband does not want them to do this. Of the many roles you may now have, your husband has chosen: wife! Be glad, I will tell them. I know you want to help, but it is a two-way street, each participant must be willing to let that other person have more than one role. If one participant is not 100% willing, then so be it! Only the PLWA can decide if he/she wants to get better and who will help with that. You don't need to carry all of the burden--there are people out there, such as myself, who have gone to school for a long time to do this. We aren't related to you, we have no personal history or previous roles with you, and our role is therapist, period. I'm more than happy to help someone become the therapist if that's what both persons desire, but I won't put more burden on either one of you if you don't choose it. I won't automatically assume that since you are the primary caregiver, you should be jumping up and down to get into having therapy at home with your spouse after you've been doing the physical therapy and other exercises, as well as your daily household and work schedules. You have the right to say, "No, I don't want to do this". By letting the therapists push you into this position in which you feel obligated to perform, you are adding stress to an already stressful situation. So you will either say you'll do it but won't, or you'll do it but resent it, or perhaps you'll be happy to do it. There are several possible scenarios. Yes, it's better if there is someone else who will help so that progress can be made faster--does it have to be you? No. Can your children, students, neighbors, church, or other volunteers help out in this area? You still have a life, don't let guilt make you miserable--the world's fate does not hang on your shoulders. Skipping exercises due to real life a few times a week doesn't kill anyone.
The only critical piece is carry-over from therapy to home life, and I find that not many therapists know how to educate caregivers appropriately about carry-over. Since PLWA spend 6-weeks at our facility, carry-over after the session is crucial, but by that time everyone should feel educated and entirely comfortable about communication.
I am putting together a manual for caregivers and I could use your stories for it. Tell me your story--we'll talk about it next time......
Thursday, April 16, 2009
Intensive aphasia treatment centers
I will frequently get calls or emails asking me if there is an intensive aphasia center near them. While I am pleased that more and more people are finding out about the benefits of an intensive treatment program, I then have a lot of work to let people know that this is a rare service. In North America, there are 4 facilities that provide this service. The original program is at the University of Michigan, and Nova Scotia has a 4-week program every summer for persons living with aphasia (PLWA) and their caregivers. The Philadelphia VA has a 17-day program available only to veterans in that state. Finally, our program at Aphasia Center at Steps Forward has a 6-week program for 180 hours. I try to explain that this is a very time-consuming and laborious service, not only for general overhead, but also to employ the best therapists and to adhere to our very high standards for therapy. There are not many places out there that can support the staff, research, time committment, and ability to survive without insurance for 6 weeks at a time. I know this scarcity doesn't help people who don't want to travel to Florida (or one of the other programs), but I think it does give you a feeling that if we've gone to the trouble to make a center, we must know what we are doing. If you want excellent medical care, you may go to Mayo Clinic, if you want excellent aphasia treatment, make the effort to go to a center, no matter where you choose to go. Please remember that you and your loved ones are worth it. It's always worth it when you invest in yourself! Give yourself permission to go for it!
Thursday, March 26, 2009
The Alternatives
So, you may be one of those people whose insurance has stopped paying. Maybe your insurance doesn't cover speech therapy or you don't have insurance at all. There are several options that may be available to you. I'm going to just discuss speech since this is an aphasia blog, but there may be similar options for other therapies.
If you want to continue to work on your speech, I recommend that you attend a local aphasia support group to get ideas of what resources there may be in your area. You can find a list of aphasia support groups online at the National Aphasia Association (http://www.aphasia.org/). There is also contact information on this website for state representatives. These representatives, such as myself, will tell you what options or services may be available in your area. The NAA also lists research opportunities for which you may qualify. You may be able to receive free therapy for a period of time.
Is there a nearby university that has a Communication Disorders clinic? These clinics usually offer group and individual therapies for a low fee or for free. It's cheap because the sessions are conducted by graduate students, who are supervised by licensed clinical instructors.
There are the software programs as mentioned previously, such as Parrot software or Bungalow software. These are great ways to work on your language skills on your computer. They are not a substitute for real live speech practice, however. While these programs may have indirect effects on your speech or writing, I would recommend doing some research to decide which program would be the most beneficial. Determine if there are demos available before purchasing and test out the different programs.
Some people have obtained grade school grammar or other language books for practice. Or purchased workbooks that some clinicians use. Is there an aphasia program near you? Do some googling to find out.
Some persons have contacted local speech pathologists to find someone who will help them privately. The fee varies depending upon where you are, but there may be someone who can help you. I encourage you to continue to work to continue your improvement. Remember, you get what you pay for, so choose your time investment wisely. It may be worth it to you to pay for an intensive aphasia program so that you make great results with a minimal time investment. Or it may be worth it to you to spread out your recovery over a longer span of time to save money. Whatever your choices, do as much as you can! The only limits placed on you are those you tell yourself! Don't believe the doom-and-gloom story other medical professionals may hand you.
If you want to continue to work on your speech, I recommend that you attend a local aphasia support group to get ideas of what resources there may be in your area. You can find a list of aphasia support groups online at the National Aphasia Association (http://www.aphasia.org/). There is also contact information on this website for state representatives. These representatives, such as myself, will tell you what options or services may be available in your area. The NAA also lists research opportunities for which you may qualify. You may be able to receive free therapy for a period of time.
Is there a nearby university that has a Communication Disorders clinic? These clinics usually offer group and individual therapies for a low fee or for free. It's cheap because the sessions are conducted by graduate students, who are supervised by licensed clinical instructors.
There are the software programs as mentioned previously, such as Parrot software or Bungalow software. These are great ways to work on your language skills on your computer. They are not a substitute for real live speech practice, however. While these programs may have indirect effects on your speech or writing, I would recommend doing some research to decide which program would be the most beneficial. Determine if there are demos available before purchasing and test out the different programs.
Some people have obtained grade school grammar or other language books for practice. Or purchased workbooks that some clinicians use. Is there an aphasia program near you? Do some googling to find out.
Some persons have contacted local speech pathologists to find someone who will help them privately. The fee varies depending upon where you are, but there may be someone who can help you. I encourage you to continue to work to continue your improvement. Remember, you get what you pay for, so choose your time investment wisely. It may be worth it to you to pay for an intensive aphasia program so that you make great results with a minimal time investment. Or it may be worth it to you to spread out your recovery over a longer span of time to save money. Whatever your choices, do as much as you can! The only limits placed on you are those you tell yourself! Don't believe the doom-and-gloom story other medical professionals may hand you.
Sunday, March 15, 2009
After the insurance is gone
I hope that you are one of the people who is dissatisfied when told that your therapy is done when your insurance says it's done. Do not think that since the insurance isn't going to pay anymore, you have gone as far as you are going to go. I have met so many people with aphasia who were told by the doctor or by their therapist that "this is as good as you are going to get", live with it. There is a lot left to be done and to be said when someone tells you this. A lot of people will believe these limiting ideas, lose hope, become depressed, and stop trying to communicate with the world. The only limitation is the one you set for yourself.
The other people will fight, and they will use this experience to push themselves to continue. If your communication is important to you, you will find a way to keep working. You may have been told that there is nothing that can be done for you, but this is not true. I watch it every day at the Aphasia Center. There are many alternatives to consider when your insurance stops paying that are not always ideal, but every little effort you make counts. There are inspirational stories from stroke survivors all around you--Barbara Newborn, Paul Berger, and others--that can provide hope and keep you going. Your insurance may or may not be limited to the number of visits for speech therapy, call them and find out. Does it start over again each calendar year? Does it continue to pay if you continue to make progress? Use all of the resources available to you. Our next blog will help you determine what resources are available. Have comments? Let's hear your story--let it out!!!
The other people will fight, and they will use this experience to push themselves to continue. If your communication is important to you, you will find a way to keep working. You may have been told that there is nothing that can be done for you, but this is not true. I watch it every day at the Aphasia Center. There are many alternatives to consider when your insurance stops paying that are not always ideal, but every little effort you make counts. There are inspirational stories from stroke survivors all around you--Barbara Newborn, Paul Berger, and others--that can provide hope and keep you going. Your insurance may or may not be limited to the number of visits for speech therapy, call them and find out. Does it start over again each calendar year? Does it continue to pay if you continue to make progress? Use all of the resources available to you. Our next blog will help you determine what resources are available. Have comments? Let's hear your story--let it out!!!
Sunday, March 8, 2009
Augmentative/Alternative Communication Part 2
What are some of the alternatives to purchasing an elaborate paperweight (AAC device that does not get used! Just like how your exercise machine becomes a coat rack)? The one I would most recommend is purchasing computer software if you are just looking for something for practice. The two big companies that come to mind are Parrot Software and Bungalow software. I do not have a lot of experience with Parrot, but my facility does use Bungalow. I leave you to make up your own mind. I do know that you can get a CD from Bungalow that has all of their programs in a demo format. Are all of the programs the way I would do a program? No, but that's not to say that they aren't useful for certain types of activities. You can customize the programs to make them harder or easier. For about $100, you can own one of the programs and use it all you want. $100 versus $15000 seems like a good deal.
There are also the old-fashioned types of communication devices, namely communication books. These are just small photo albums or notepads with some words or pictures already written in them. To be used successfully, the persons with aphasia should be able to find the items in their categories and point to what they want to say. I'm sure it isn't wonderful from the person with aphasia's viewpoint, but there are some folks with severe aphasia for whom this type of book could be appropriate.
I am currently reviewing a new device set-up for persons who can type some letters to know what they want to say. This system was sent to me by Dick Myers out of Washington state. I'll provide more details later after a thorough review. Technology is a good thing, and there are several free programs available online that can also help you with your goals. ReadPlease allows you to copy and paste information into the web screen so the computer can read it to you. I will list more programs if there is an interest. See you next week!
There are also the old-fashioned types of communication devices, namely communication books. These are just small photo albums or notepads with some words or pictures already written in them. To be used successfully, the persons with aphasia should be able to find the items in their categories and point to what they want to say. I'm sure it isn't wonderful from the person with aphasia's viewpoint, but there are some folks with severe aphasia for whom this type of book could be appropriate.
I am currently reviewing a new device set-up for persons who can type some letters to know what they want to say. This system was sent to me by Dick Myers out of Washington state. I'll provide more details later after a thorough review. Technology is a good thing, and there are several free programs available online that can also help you with your goals. ReadPlease allows you to copy and paste information into the web screen so the computer can read it to you. I will list more programs if there is an interest. See you next week!
Monday, March 2, 2009
Augmentative/Alternative Communication
Almost every person with aphasia has some experience with an augmentative or alternative c0mmunication device, usually called an AAC device. The devices that I'm going to talk about now are the computerized devices. You may know these by their brand names--Dynavox, Mercury, Say-It!Sam, Lingraphica and others. While many therapists will recommend these devices to their patients with aphasia, my experience has shown me that not one of these persons who gets a device uses it consistently for a long period of time. There are two "benefits" that are sold to you when someone wants you to get a device--practice modules and computerized speaking. Therapists are usually bogged down by the insurance system, may not know what else to do with your case, and figure that an AAC device is the answer to help you out.Practice modules means that there is some part of the machine that you can use to practice speaking--maybe it speaks a sentence for you and you can mimic it eventually. You could also match words to their pictures and other tasks. Computerized speaking means that you will not speak, the machine will. I have found very few people with aphasia who like this option. Everyone I know wants to speak for themselves, and the public at large does not respond well or have patience for someone to use a device to speak. Frequently these devices are bulky (about the size of a laptop computer), which is not easy to carry around, find a place to put it, turn it on, and expect someone to wait while you do all of this. The smaller devices are hand-held, but unless you are able to use both of your hands/arms to hold it and choose things to say, it isn't helpful in the community. This obviously applies to a person who can walk around. A wheelchair mounted device may be more functional for someone in a wheelchair.Why am I telling you all this? I get tired of people with aphasia being told that this device will cure everything and be the best idea. There are alternative out there that your therapists may not be aware of, depending on the purpose of your device. These computerized devices run from $3500 to $15000, even if your insurance pays for it. I find that many of these devices are rarely used after purchase for several reasons. 1) The person with aphasia didn't really want to get it in the first place and the therapist just made it happen. 2)The person with aphasia did not realize that it was to be used to speak for them and does not want to do this 3)The training that has been received is minimal and no one can figure out how to operate it 4)It is too complicated to use 5)The person with aphasia finds it too large or heavy to lug around 6) Without the constant support of the therapist, the person with aphasia loses interest. Am I advocating that you don't get a device? Maybe. It's an individual decision, I just want you to be aware of what you are committing your (and your insurance's) money to. What are the practice alternatives? Stay tuned for the next segment.....
Subscribe to:
Posts (Atom)
