Sunday, July 13, 2014

Today's Word is 'Aphasia'

According to the National Aphasia Association, an estimated one million people in the United States have acquired aphasia, or about one in every two-hundred and fifty people. With that many individuals affected by this devastating language disorder wouldn't you think that more people in the general population would have a better understanding of what aphasia is all about? Since my husband's stroke I've been hard pressed to find anyone outside of the medical profession who has even heard the word 'aphasia' much less understand that it's not a psychological illness or mental retardation. So, today's word---let's all say it together---is 'aphasia.' Aphasia is a condition, not a disease, and it's produced by a brain injury such as a stroke or traumatic head injury. Strokes are the most common cause of acquired aphasia. Even people within the stroke community have a hard time absorbing the facts about aphasia, that there are many types and degrees of severity depending on the exact location and size of the damage in the brain. Or in other words, all aphasia is not equal. Each person who has it is unique. Estimates from the National Aphasia Association say that approximately half of the people with symptoms of aphasia have transient aphasia and will recover completely within the first few days after a stroke or head injury. In the other half, for whose individuals with aphasia that lasts longer than three months, a complete recovery is highly unlikely. There is no magic pill, no hi-tech treatment or surgery that can cure aphasia.

Coming to terms with the more severe forms of this condition---the long terms deficits and social isolation of losing one's ability to communicate in the normal way---requires many months of treatment with a speech pathologist. But it's not hopeless in the sense that families dealing with severe aphasia, like our family does, can learn valuable coping and compensation techniques. People with milder forms can improve with hard work and therapy although aphasia never goes away for them; it will come back to haunt them when they are tired or under stress. Traditional therapy can include using computer-aided exercises which are best recommended and overseen by a speech pathologist so that you get the right "fit." Therapy is based on a lot of repetitive exercises and patience for everyone involved. My husband, for example, had a one word vocabulary for many months. That word was "yes" and it took many more months to get him to where he could say "no" with any accuracy.

People will naively ask me why my husband, Don, doesn't just write what he wants to say. I wish it were that simple but the type of aphasia he has includes a related condition known as agraphia which is the inability to use written language. This is not true for all aphasics, some can write and type.
People will tell me that Don was able to say such and such the last time they saw him. "Why can't he say it today? Did he have a relapse?" they want to know. They don't understand that: 1) he may have been parroting someone else's speech which isn't the same thing as planning what he wants to say in his head and being able to sequence the muscles in his mouth to get those words out; or 2) the sequencing might work for him one day, but not another.

Upon hearing this last explanation, some people will then ask, "Does he still have paralysis in his vocal cords and mouth then?"

"No," I'll answer, "That's a different stroke related language disorder from what Don has. His aphasia is paired up with apraxia, yet another aphasia related condition. He knows exactly what he wants to say---the thoughts form in his brain---but if he tries to say something, he can't. If he doesn't try, he can parrot whatever he hears if he does it with no forth thought." We use parroting to try to jump-start planned speech but it's not the same thing as teaching a little kid new words thinking that you're building vocabulary in a person with Don's combination of speech issues. His language disorders could be compared to a car with a bad transmission. His brain (the car motor) and the muscles in his mouth (the wheels of the car) work fine but the transmission in between is out of commission.

It takes a while for a speech therapist to sort out what type of aphasia/s their clients might have and it's not uncommon for a client to have several forms of aphasia and/or other related language disorders. The therapies often vary for different types of aphasia and their related conditions. In addition to apraxia, the labels that have been hung on Don's language disorders---all caused by damage in the frontal lobe of the brain---include: non-fluent aphasia, Broca's aphasia (the inability to use little words like 'it', 'to' and 'the') and telegraphic aphasia. Nouns come out the easiest for him but the other parts of speech are practically non-existence.

Other types of aphasia that my husband does NOT have include: Wernicke's aphasia (caused by temporal lobe damage and it produces fluent speech with no meaning), conduction aphasia (the speech is intact, but dictation is impaired), global aphasia (the person loses most language function, both using it and understand it), and anomic aphasia also known as nominal aphasia (it involves the inability to name objects). There are other types of aphasia as well. Often co-existing with aphasia are the conditions known as agraphia (writing impairment), alexia (the inability to read) and apraxia (a disorder of skilled movements).

What happens in the time frame when an aphasic and his or her family are coming to terms with the loss of easy communication? Denial, anger, depression and finally acceptance that life can and will go on---with or without a bad attitude towards the future. Even this far out from my husband's stroke---his stroke was in May of 2000---we still have a rare, stress-filled day where that stress is generated from communication problems; he wants to tell me something and no matter how hard I wrap my brain around the few clues he's able to get out, I can't crack the code. His daily unprompted vocabulary ranges around twenty-five words. Humor, we've found, is the best way to deal with aphasia. Sometimes it's the only way. A lot of funny things happen on way to learning to live with aphasia in the family.

Insurance never covers enough therapy for people with aphasia. We were luck to find a college near by that has a speech pathology department where future speech therapists work with people from the community. My husband goes to one group and one individual class a week when the college is in session. To be around others with similar problems and to learn as the students learn has been a blessing for both my husband and me. His prompted vocabulary still improves in the length of time it takes to pull words out of his head.

I was observing Don's group speech class last week when a new client was trying to say something about a photograph in front of him and all he could get out was "Yes, no. Yes, no." I leaned over to his wife and told her that Don does that "yes/no" dance all the time, too. She whispered back: "Doesn't that just drive you crazy! I'd like to bop him over the head when he does that." I laughed. I've been to Crazyville so many times I've put a down payment down on a condo. ©

You can find my new blog at The Misadventures of Widowhood and I have another blog dealing with aphasia at: From the Planet Aphasia

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How to Be a Good Friend to Someone with Aphasia

The estimated number of people in the United States who have acquired aphasia, a language disorder caused by a head injury or a stroke, is over one million people. That's one in every two-hundred-and-fifty people. It affects individuals in all age brackets and chances are you either know someone who has aphasia or you will know someone in the future.
Not being able to communicate in the normal way brings on a devastating sense of isolation for people with this disorder and it often causes severe depression. Learning the basic, common sense tips listed below can prevent you from unknowingly adding to your friend's loneliness and dejection.

1) Don't stop calling your friend on the telephone. Just because he or she has difficulty talking doesn't mean your friend has lost interest in hearing about what is going on in your life. It may be hard, at first, to carry on a lopsided conversation but stopping your regular pattern of contact will only adds to your friend's isolation.

2) When making a social engagement over the phone, or planning a visit with someone with aphasia, confirm those plans with their spouse, significant other or caregiver. It may be hard-to-impossible for your friend to repeat those plans to the person who will need to know about them. Don't add extra stress to their relationship by not confirming your engagement or visit with both parties involved. What will only take you seconds to convey may take your friend hours to get across.

3) When seeing your friend in person, talk directly to him or her and not through someone else in the family. There are many types of aphasia but in most cases, people with aphasia can understand everything that is being said to them. Remember that the inability to processing language in and/or out usually has nothing to do with loss of intelligence. Treat your friend as an adult, not a child. If processing language in seems to be a problem, then allowing a few moments in between your sentences can help.

4) Whenever possible eliminate as much background noise as you can when conversing with your friend. Distractions from radios, televisions or other conversations going on near-by makes it harder for the people with aphasia to process language. If you need to repeat yourself in situations where background noises can't be eliminated, try to phrase your sentence the exact, same way the second time.

5) Don't call attention to or correct grammatical errors and poor articulation if the basic message is understandable. You are a friend, not their speech therapist or a close family member who knows what a therapist may have assigned for homework. Most people with aphasia are embarrassed enough about their diction, slurred words or inability to find the right words. Just getting their words out is often a major accomplishment. So be proud of your friend's efforts and remember that what you may think of as 'help' may seem like criticism to your friend.

6) When your friend is trying to get a sentence or word out, listen attentively and don't vocalize the word/s that you think he or she is trying to say. Give your friend plenty of time to get those words out without your help. If you guess wrong while he or she is still trying, you will break your friend's concentration and cause more frustration. If your friend had the word on the tip of the tongue, ready to come out, you will annoy him or her without meaning to.

7) Humor is usually a welcome commodity to lighten interaction with someone with aphasia. Don't be afraid to use it so long as you remember that the goal is to laugh with your friend and not at him or her.

8) A person with aphasia often gets more withdrawn in a group setting. Encourage participate in group conversations by occasionally asking him or her questions that have yes/no answers. Your inclusion will make him or her feel more a part of the gathering without the embarrassment of having to come up with a lot of speech.

9) Successful communication comes in many forms including gestures and facial expressions as well as the spoken words. Pay attention to your friend's body language.

10) The loss of friendships is one of the hardest parts about getting acquired aphasia. Don't let your own self consciousness keep you away. Relax and just be the same person you've always been around your friend.

Aphasia is a disability that has been in the closet far too long. People dealing with this disorder need the general population to understand that aphasia is truly just a communication disorder and not a mental retardation. If you take nothing more away from this article than this fact, that will be a HUGE help to all people with aphasia. ©

NOTE: There are links up above the title line if you wish to e-mail this article to someone or to print it out for yourself. Feel free to post a link back to this article, if you wish, but do NOT copy and paste the entire article onto another website without the written permission of the author.

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Ten Tips for Caregivers to Stroke Survivors

According to the American Stroke Association 5,700,000 stroke survivors are alive in the United States. Strokes, they say, are the leading cause of long-term disability. If your loved one just had a stroke, you (or another relative) will face the scary prospect of becoming a new caregiver as soon as your survivor is released from the hospital or stroke rehab center. It will be a long road filled with small and large disappointments, tiny and great rewards.

At times you will feel helpless and inept. At other times you will feel like you are your loved one's greatest warrior in a world where you have to fight for therapies, information, understanding, help, payments from the insurance companies, and time to get everything done that needs doing. These are all normal experiences and feelings. Adapting the ten tips below can help you cope and become a more effective caregiver.

(1) Keep good records. Set up a notebook with sections to:
a) Document all your phone calls to doctors, therapists, hospitals, and pharmacies.
b) Document all applications and contacts with places like Social Security Disability, the Veteran Administrations, insurance companies, banks, pension administrations, etc.
c) Document out-patient or home therapies and your loved one's progress and moods
e) Keep a record of all appointments
f) Keep contact information for doctors, hospitals, therapists, pharmacies, facilities, agencies, community and internet resources, etc.
g) Keep notes of all medications given and the effects you see in your loved one when changes are made

(2) All strokes are different depending on the location in the brain and the size of the clot or bleed. All stroke survivors are different depending on their determination, age and inner resources. Research your care recipient's type of stroke. Know what part of the brain was damaged and what that part of the brain controls. The more you know about strokes the better you'll be able to react appropriately to the changes you'll see in your loved one and to become a better caregiver.

(3) Be grateful when extended family or friends pitch in to help and don't let yourself be eaten up with resentment when they don't. It's common for people to rally around in the first month, and then drop off after they think you have settled into your caregiver role. Keep a To-Do list handy for those times when others ask, "Is there anything I can do?" People will response quicker if they are given a specific task rather than a general, "I'll let you know." You can even make a joke of it and say, "Here's my To-Do list. Take your pick."

(4) Develop a sense of humor. It defuses the tension when speech issues come with a stroke, food is spilled or other frustrations and accidents occur. Don't treat them like the elephant in the room that no one talks about.

(5) Find a local or on-line stroke support group. Call your local rehab hospital's social worker to see what might be available locally. On-line you'll find message boards at Empowering Caregivers, The American Stroke Association and The Stroke Network where you can interact with other caregivers.

(6) Be grateful for and celebrate every sign of progress no matter how small, but remember that your stroke survivor might take a step backwards once in a while. Plateaus will also happen; don't get discouraged when they do even though insurance companies will drop coverage for therapies when a plateau lasts too long. Plateaus are sometimes followed by a nice, spontaneous jump forward. If you see positive changes happening after a long plateau ask your doctor if she or he will write you a new prescription for more therapy. If it's a new calendar year, you can often get the insurance companies to agree. Be a strong advocate for your stroke survivor.

(7) When you feel over-whelmed, call an understanding friend to confident in. Ask for, or hire, help if you need to run away from caregiving for a few hours. A movie or a walk in the park can do wonders to recharge your batteries. If you have trouble finding someone to sit with your care recipient, check to see what community resources are available in your area such as adult day care or caregiver respite services through churches or synagogues. Most areas have a 211 telephone system. Start by calling that number for caregiver related referrals. Above all, don't feel guilty if you need a break.

(8) Subscribe to the Stroke Connection Magazine (published by the American Stroke Association) and theStroke Smart Magazine. (published by the National Stroke Association. Both of these magazines are free and can be ordered on-line.

(9)You will make mistakes, loss your temper and/or have feelings of complete helplessness. Don't beat yourself up for this. You are only human and the beginning weeks/months of caregiving are very stressful. Give yourself time to adapt to your new routine and to develop coping skills. Seek professional counseling if you start feeling too trapped, resentful, lost in the shuffle or seriously depressed. Many caregivers as well as stroke survivors need antidepressants in the first six months following the stroke. Remember you can't care for someone else if you don't take care of your own mental and physical health.

(10) If you are caring for a parent, the role reversal of a child taking care of parent---no matter what your ages---is a difficult transition to make for most new caregivers. Much depends of the personality of the care recipient's ability to give themselves over to that care and on the son/daughter's ability to accept the fact that they are TRULY in charge, even if it's only temporary. A caregiver to a parent who has had a stroke must be prepared to make the tough decisions, even if you get no cooperation from their mom or dad. Don't feel guilty if you have to go against their wishes. It's pay-back time for all the times when your parent had to make unpopular decisions for you in YOUR best interest.

Being a caregiver is a job few of us want but most of us will do at one point in our lives. As you take on this new role, remember that you are not alone. Reach out to others who have been there, done that and who will understand how this job can be both the toughest and the most rewarding thing you've ever had to do. ©

NOTE: Please do NOT copy and paste this article to another website without the written permission of the author, but feel free to post a link back to this article where ever you wish.

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How to Create a Family Caregiver's Home Health Emergency Care Plan

 This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason.

 Having been a caregiver for my stroke survivor husband for the past seven years, and having share-cared for my dementia inflicted father the five years before my husband's stroke, I've learned a lot about the need to write an Emergency Care Plan. Family caregivers occasionally get sick or have other set backs that can put their care recipient in a dangerous position if an Emergency Care Plan is not already set in place. Unfortunately, I know from being a mentor on a stroke support website that most caregivers don't have an Emergency Care Plan and that is a potentially life-threatening mistake. What should be in your plan? An Emergency Care Plan should include all essential information another person needs to know to take over in your absence, be it a few days or longer. When you write your first plan, take your time and be as detailed as you can. Updating the plan periodically after that will only take a few minutes. The seven essential pages to include in an Emergency Care Plan are:

1) Medical Emergency Contact Information When you create your own Emergency Care Plan be sure your medical contact page includes the names, addresses and phone numbers of all the doctors your care recipient sees to manage their condition. List all contact information for medical insurance companies. Also include the dentist, hearing center, eye doctor and other medical services you may use for lesser emergencies that could come up in your absence. In addition include your hospital, pharmacy, wheelchair repair service (if applicable), and the contact information for the person who holds the Durable Power of Attorney for Health Care and the contact information for the successor should the primary patient advocate is not able to act.

2) Family Contact Information List all the people who'd need to be called should there be a medical emergency requiring hospitalization of your care recipient. Also make a note of which family or friends might be willing to patient-sit in your home for an hour or two, if needed, to back up the person who takes over in your absence.

3) Health Condition Information This page of the Emergency Care Plan needs to list of all the medical conditions that apply to your loved one.

4) Medications and Testing Needs On this page include not only the name of the drugs and dosages your loved one needs but also the times of days to dispense the medications, where you keep the bottles in the house, and what each drug is for. If testing is required to manage something like diabetes or high blood pressure list the frequency and target ranges and what to do if your loved one tests out of the range.

5) Daily Routine The family caregiver assists their loved one in way they often take for granted but it's important to pass these things on to someone taking over in a temporary situation. When you make your Emergency Care Plan be sure to write out detailed instructions for: special toileting requirements, transfers, showers, dressing, exercises or therapies, and daily routines, etc.
6) Meals and Food List any special dietary needs your loved one has including the time frames meals are usually served. List all foods and liquids that are not allowed because of drug interactions, swallowing issues or allergies.

7) Home Health Care Services In a worst case scenario where an outside service (rather than another family member) needs to be called your Emergency Care Plan should include contact information for professional home care services that you've checked out and/or prefer to use for your family member. If there are senior daycare services available where you live, list those too. A family member might be able to better manage taking over for you if they can use daycare. When you finishing writing your Emergency Care Plan be sure to carry in your wallet an easy-to-find paper telling where you keep your plan, should you get in an accident and not be able to talk.

The above seven pages are essential for your Emergency Care Plan. My plan also includes: a) A page for our vehicle that includes how to transfer my husband between the car and his wheelchair, how to operate the Bruno chair lift, insurance information, and who we use for service; b) A page for the care and feeding of our dog including some boarding options should that become necessary; c) A page for the care of our house and plants including insurance information and who we call for appliance repair, etc.; and d) An information page about my own health issues, my POA and medical contacts.

No one is immune to having a medical event or accident, caregivers included. If you are a caregiver without an Emergency Care Plan start planning yours today. If you know a caregiver---perhaps a parent, grandparent or friend---e-mail this article to them via the link at the top. It could literally save the life of someone you care about or take a lot of stress off from anyone who has to take over care in an emergency situation. ©

NOTE: Feel free to post a brief excerpt and link back to this article where ever you wish but do NOT copy and paste the entire article without the written permission of the author.

Published by Jean Riva

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Caregiver Stress: Straight Talk for New Caregivers

Fifty million Americans, according to The National Family Caregivers Association, care for a loved one who is disabled, chronically ill or fragile from old age. That adds up to a lot of potential for caregiver stress and conflicting emotions.

The Deer Caught in the Headlines Syndrome
The family member who inherits the caregiver job after an accident or unforeseen health crisis faces overwhelming pressure. Feeling like a deer caught in the headlines, unable to move is a common emotion. Too much medical information is coming at them, too much is being asked of them and too much is being focused on the care recipient while the caregiver is falling apart inside and silently screaming, "What about me?" In many cases, the care recipient is the very person the new caregiver used to go to for support and comfort and with that relationship out of kilter, coping with caregiver stress can seem insurmountable.

The God-Never-Gives-Us-More-Than-We-Can-Handle Myth
A lot of platitudes are thrown around when caregiver stress manifests itself and the new caregiver tries to reach out. Friends and co-workers trying to be sympathetic often say things like: "God never gives you more than you can handle" or "get a grip" or worst yet, "you're not the patient here." For a few people platitudes might work to help them screw up their courage but for others, they are freaking out inside and wanting to shout back: "I do have more than I can handle. I can't get a grip and I might not be the patient here but I still need help!" What caregivers, and those who care about them, often don't realize is that caregiver stress---in the early months---is rooted in the Five Stages of Grief. Mourning a past way of life and fearing an uncertain future takes its toll. It's like being shell shocked. They are just going through the motions of what is required of them.

Crawling Out From Between the Rock and the Hard Place
Anyone who is familiar with the Five Stages of Grief knows the first stage is denial followed by anger, bargaining, depression and finally acceptance. Most caregivers move through the denial stage fairly quickly. But the anger stage is a different ball of wax, bringing on a lot of caregiver stress. They are angry at everyone: God, their care recipient, themselves, the medical community and/or people who they perceive as going about their own lives without acknowledging that the caregiver can't do that. They are floundering at getting organizing and unable to see that the solutions to their problems aren't going to find them; they have to go looking for way to reduce their caregiver stress. To dig out from between that rock and a hard place the caregiver needs to acknowledge where they are in the Five Stages of Grief and to seek professional counseling or peer support in the caregiver community if they have been stuck in one stage too long. Until new caregivers get to the acceptance stage, they will not be able to put the 'why me' mindset aside and start rebuilding their lives.

Staying Power for the Long Haul
Once a new caregiver is at the acceptance stage it's easier to put into practice the things they've read or heard about dealing with caregiver stress i.e. finding outside help. They will call their local 2-1-1 telephone referral system to learn what resources are available in their county such as adult day care, caregiver respite, home health care, social services, transportation services, Elder Care, peer support groups, and organizations like the Easter Seals, Lyon's Clubs and Red Cross that in many communities offer limited help. They will weigh up the options of downsizing, nursing homes, assisted living or hired caregivers. They will start believing that they do, indeed, have a right and a responsibility to look after their own mental and physical health as well as that of their care recipient. They will read the Caregiver's Bill of Rights and use it as a mantra should they be dealing with guilt trips or manipulation. They will find a family counselor should they need help dealing with extended family.

To hang in there for the long haul, and reduce caregiver stress, a person needs to form a plan and work the plan and that plan must include saying goodbye to their old life. Being a family caregiver can be a rewarding experience but it doesn't come without sacrifices. The biggest challenge a caregiver faces is---as the Serenity Prayer says---finding the courage to accept the things that cannot be changed, the courage to change the things that can be changed and the wisdom to tell the
 difference. ©

NOTE: This copyrighted article may not be cut and pasted to another website without the written permission of the author. A link back to this page plus an excerpt of the first four sentences may, however, be posted elsewhere. To e-mail this article to a friend or family member, see the link below.

Published by Jean Riva

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