Communicating With People Who Have Aphasia

I am copying this here because it is how I have to communicate with my husband. I think it would be very useful for people to know and I am thinking of printing it out and handing it to folks at the VA....lol.


Communicating With People Who Have Aphasia
Some Do's & Don'ts

Aphasia is a communication impairment usually acquired as a result of a stroke or other brain injury. It affects both the ability to express oneself through speech, gesture, and writing, and to understand the speech, gesture, adn writing of others. Aphasia thus changes the way in which we communicate with those people most important to us: family, friends, and co-workers.

The impact of aphasia on relationships may be profound, or only slight. No two people with aphasia are alike with respect to severity, former speech and language skills, or personality. But in all cases it is essential for the person to communicate as successfully as possible from the very beginning of the recovery process. Here are some suggestions to help communicate with a person with aphasia:

1. Make sure you have the person's attention before communication.
2. During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.
3. Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don't need to speak louder than normal but do emphasize key words. Don't talk down to the person with aphasia.
4. Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
5. Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
6. Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticism/corrections. Avoid insisting that each word be produced perfectly.
7. Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
8. Encourage them to be as independent as possible. Avoid being overprotective.
9. Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoice burdening them with day to day details.

These guidelines are intended to enhance communcation with persons who have aphasia. However, they cannot guarantee that communication will be immediate or on a par with former skills.

Copied from: http://www.aphasia.org/Aphasia%20Facts/communicating_with_people_who_have_aphasia.html

More information can be found at: http://www.aphasia.org/index.html



Needing a wheelchair

It seems so strange to me that 1 1/2 years of taking care of Dean could result in me still learning new things about his injuries, but it's happened.

We don't go many places and I always thought that with the diagnosis of PTSD it must be that all the people and bustle was just too much for him. I was almost right. There is actually another piece in there that never occurred to me until one day at the VA.

I took him to the VA for an appointment one Monday after he had been at drill all weekend (drill always wipes him out). He was beat this day and I talked him into letting me push him in a wheelchair around the VA and he complied. We were there for many hours and through much stress. Now normally after a day at the VA when he gets back into the truck afterwards, he is putting off an air of "get me the hell home and don't talk to me" and he is very shut down. But this particular day after having been pushed in the wheelchair at the VA he was jovial and happy in the truck on the way home. I asked him if he thought the wheelchair had anything to do with it and although he didn't like admitting to it, he said the wheelchair helped him.

We tried the wheelchair routine for the next couple of appointments and it worked the same way time after time.

It was a weekend camp retreat where we had to do lots of walking in this most beautiful forest setting (which is Dean's favorite place to be) where I was really wishing he had a wheelchair. I could see how much mental energy the walking was taking from him. He said that every step was like stepping off of a moving cart and that it really just wipes him out.

It was this weekend that I realized that the main reason we avoided leaving our house was not due to the PTSD, it was that walking took so much concentration and mental energy that he didn't have any brain function left to deal with the people, the bustle, the noise, etc. When I remove the need to walk from the equation, he can handle the other stuff 100 times better!

Overwhelmed and Lost

I just don't know what's wrong with me the last few days. I feel so alone and like there is no point in talking to anyone about it. I feel like there is so much that I don't know where to start or even what I would say. I will just ramble all the thoughts that enter my mind and see if any of it gets straightened out:

I fear that Dean is having more difficulty that will start to affect his current abilities. There are a lot of abilities that he lost due to his injuries but we try to focus on what he still CAN do. The last couple days he's been having to do some trailer/rig electrical work which would normally not be a problem. Except he's been having problems. Post-injury he had figured out a way to keep track of his work, but with this project he's having difficulty tracking and remembering what he's doing. He is getting confused right in the middle of things. He says he just can't seem to figure things out and he knows he knows how to do this stuff...but right now he just can't seem to do it and doesn't know why. He also says his eyesight is getting worse. He's out there working on the rig with a magnifying glass so he can see. I feel so helpless and so very sad for him. How can anyone understand this? My God if this is an indicator of his future then I think I will need medication to fight sadness :(

Just trying to wake up each day and be happy is becoming a chore. Each day I think today is just another yesterday.

So many things on our plate right now have to be repeated over and over because he forgets. We want to buy or build a house and we both want two different things. He wants what he's always dreamed of while I want what's going to be best for our future. I look at our future of probably Alzheimer's and me doing everything I do now and more until I die. Basically I live a life that requires me having access to help and family while he wants to be far away from people. Practically speaking we are talking he wants 5 to 40 acres and I know that he will need to be in the country away from city noise and hustle/bustle of people but I think 1 to 5 acres will be more manageable. He wants many animals...like a small ranch/farm (which he can't take care of but he thinks he can). I can see some chickens and MAYBE a cow? Those are our disagreements. We agree that he needs a machine shop and a greenhouse and garden. It is so frustrating trying to find locations to look that meet the requirements. I just can't wait for our credit to be good enough for a prequalification so we can call an agent and let him/her look for what we want. I'm hoping that he/she can perform some miracle with our needs.

I am not able to maintain all the healthful living that I want. I need someone to help motivate me. I need help.

I have tons of things I still need to get done and have lost all steam. I read my friends' updates on facebook and their lives just go on and on and mine just doesn't. Mine feels like a skipping record or a groundhog's day just playing over and over.

Well I've spilled my thoughts and feelings out and still don't really have any clarity.

Optimism with no hope?

I was talking today to a CNA that works at a nursing home. She explained a lot to me about how things work out in the civilian world regarding people with problems like Dean has. She really GOT IT....she works with people with brain problems everyday and has been doing it for years....and she gets to see it from such a different vantage point than I do. I have thought about visiting a nursing home type facility to see if they have things set up there that I can mimic here to keep me better organized.

Anyway, at one point she asked me "How do you do it"? I replied with some kind of answer like "I have no choice....I have to just do it". As we continued talking and I told her of some issues I'm having with Dean and him spending money and trying to teach him how to track his spending and not be so impulsive she said something that never occurred to me. As crazy as this sounds....it never occurred to me!!! She said "What if this is as good as he's going to get and you can never teach him how"? At that point I had the slamming to a halt realization of something that I had not allowed myself to think about. What if there is nothing more I can do, what if I'm not the inept one, what if I'm not doing something wrong, what if I'm doing all I can do and it just isn't going to improve? I have been hanging onto some idea that if I can just get him in a routine, get him to follow some protocols, or teach him some new habits then this could all be more manageable. But what if he will never get into a routine, never follow protocols, and never learn new habits and we are stuck going around the same overwhelming circle over and over and over again?

The deepest sadness hit me.

What if this is it? I am barely hanging on as it is. I can't keep track of another life that has this much freedom and ability. How do I have the same conversations over and over about our future and the decisions I have to make that he doesn't understand? Sometimes it feels like 50 first dates with a 3 year old (and I do NOT say that to be belittling to my husband!) but in a lot of ways it's like he can't see that something won't work, he can't see that he is unable to do something, he can't see the impossiblity of a situation that contains so many facets.

Can one only maintain optimism when there is hope? I guess I will find out.

Grief

It's crazy how there are levels of grief I still go through. I am the kind of person that doesn't like to be muddled down with negative emotions, whether it's sadness, fear, anger, etc. I like to be happy and I like to be busy & productive. Sometimes though there is a sadness that I can't shake. On the outside I don't let the sadness show, but on the inside my heart is aching with a sadness that I don't think people understand.

This week I've had two experiences (one a happy experience and one a totally angry, stressful experience) that both left me with the same sadness that reminded me of what Dean can't do and will never be able to do. It reminded me that on other levels, I am alone in having to handle things with the kids. It is pointless to even tell Dean about my sadness because he says "Oh, I plan on being involved with that" and I'm sure he would if he could....but he can't see that his injuries prevent him from doing what he wants to do.

Our youngest son, little Dean, is 4 years old. He LOVES riding his bike and he loves to copy what big kids do. We have a really cool BMX track in our small town and the other day we finally took our son to the track. He loved it!!!! At first almost all of the hills were a struggle for him to get up (he has such little legs that have to pedal so fast), then he learned to master the smaller hills and just this one big hill was too hard for him to get up. He could ride the entire track except for this one big hill and needed a push up the last 2 feet of the big hill to reach the top and not slide backward and crash. We have this helper (my respite provider) that comes over 3 times a week who is in really good shape and he went with us to the BMX track (thankfully!) and ended up helping little Dean up this big hill every time he came to it. There is no way that my husband could do this...no way....ever! There really is not a good chance that even I could do it. Maybe if I become a work out chick with big buff muscles, but that would take me at least a year of committed working out to achieve....and ya, let me fit that into my boring life....hahaha. This day at the track made me realize that due to Dean's injuries there are things that he will never be able to help little Dean do. Daddy can't jog in a field dribbling a soccer ball. Heck, I'm not sure he could even stand still and kick a soccer ball (he doesn't balance on one foot very well). He can throw a ball to a 4 year old, but what about when little Dean's 9 and can throw and catch a ball from quite a distance. That kind of throwing takes having the ability to twist and having strength in your back that Dean just doesn't have because his back is so messed up.

The first time I felt this sadness was a few weeks ago when we went to a family picnic where my cousins who are in their early 30's and are in great shape were throwing a football with the kids. Little Dean ran out there and became one of the kids and had so much fun, but I knew then that that was something daddy would never be able to do with him. I think of our future and little Dean playing sports and not having a dad to practice with him. It makes me very sad.

The other experience this week was when my 16 year old son (from my first marriage) who is often a giant, disrespectful, selfish, brat was causing more crap with our family where he did what he wanted to do and who cares about the rest of the family and the inconvenience it causes. I try to shield my husband from these episodes so that it only inconveniences me. Then I give the lectures, ground him, etc, etc, which never work anyway. But this time my husband was in the car and so was also "inconvenienced". The difference is that for Dean it causes a lot more than an inconvenience. It causes him pain and stress which deteriorates his health. But my son doesn't really care about anyone but himself so.....we were all stuck waiting for him. I realized that my future will consist of Dean HAVING to be shielded from the stress that my son's disrespect and selfishness causes. When Dean is exposed to it, he is stuck between "I'm the step-dad and I have to protect my wife and family from having this punk just crap all over everyone" and "If I unleash the anger I feel, I will scare the shit out of my 4 year old and my wife and for what? Will it actually make the 16 year old act differently in the future?". He has no option that makes him feel like he's doing his job, so he feels like he's failing. My 16 year old knows this and so it works in his favor.

Seeing all the things that I will have to bear by myself because Dean can't help. Then the added weight that not only will I have to bear it myself, but while I'm bearing it I will have to be as happy and calm as I can to shield Dean from feeling like a failure. I just don't know if I can do it.

This line of thinking inevitably leads me to wish I had help/support while also thinking I don't deserve any support because every family has their challenges. I think that if my family was a supportive, helpful one they'd see this need and offer to go throw a ball with my son or to go to the BMX track with us. They'd see that the reason we hardly leave the house is so sad for little Dean, but necessary for daddy. How do I reconcile this? I can't leave my husband home alone all the time so little Dean has a more active life and my husband can't come with us. So it's little Dean that loses out.

I know that all this ties into a stage of grief which is something else most people don't understand. My husband came back alive so why grieve? But in all honesty my husband didn't come back alive, he is not the husband I married. He is a different man with different abilities and a different personality and we have a different future. Coming to terms with the loss of my old husband still happens even 2 years later. I just hope that one day I won't have this sadness??? Is that even a wish that can come true?

My Birthday

I am the luckiest woman alive that my husband is head over heels in love with me and does everything he can to make me happy and show me I'm his queen!

This year was birthday #2 since he's been home. Last year we were so lost regarding his injuries. This year we have a much better grasp on what he can and can't do and how to head things off before they get worse. That being said, we will need a few more years of practice to get the birthday thing down.

Because I know my husband so well and love him to pieces, I prepare him for my birthday for at least 90 days prior. It usually takes him at least 5 times of bringing up a topic for him to have enough any input on what he thinks about it. That's why I start talking about it at the 90 day mark. "Do we want to go to the beach?" "Does he want to do anything special for me or plan a party?" (I don't really care what we do and have no expectations, but he really likes to make me feel special and so it is a big deal for him) This year my mom and sister are throwing me party and so Dean won't have any big stuff to try and do. He could never actually pull a party off on his own and it is going to be hard enough for him to just be able to attend the party my family is throwing me.

This year at about the 30 day mark we begin talking about gift buying. He wants to spend thousands of dollars and I think less than a hundred is good. I have to be watchful of his activities to make sure he doesn't try to "surprise me" with a $1300 Mother's Ring he heard me talk about one day. We talk about how the logistics of my Thursday birthday and my Saturday party will work. Then about a week prior to my birthday he comes across a beautiful necklace and earrings that he wants to get me for $150 and after seeing his face lit with excitement, I agree and accept it as my gift from him. It is wonderful to see him look at me like I'm the most beautiful thing on the planet (he does tell me that all the time :). The few days leading up to my birthday he has to take it easy which means to mostly sit and nap and not do projects. He must do this so he will have the brain power to actually accompany me on my birthday. We'd decided to go to lunch at Olive Garden with my mom and aunts, then on to a town about an hour away to go to a great store for shopping, then eat dinner at one of our favorite restaurants in that same town. We weren't in any big hurry, but the day would be a long one, and would take its toll on Dean.

It did takes its toll on him and he was wiped out Friday and Saturday. Tonight is my party and he's been napping all day to prepare to attend. He's going to drive himself there so he can leave early and I won't have to worry about him all night.

All of this preparation and worry and stress for a birthday :( Next year we'll have to try to maybe have a special afternoon each week for 4 weeks?) Who knows.

Tips for our respite provider

David is my respite provider, a.k.a. Dean's helper. He provides Dean an extra pair of hands and helps Dean get some things done in half the time he could get things done on his own which is now a third of the time slower than before his injuries....how's that for a math problem....lol.

I've talked to other wounded warrior wives who receive respite or are looking into it and have lots of questions about how to find the right fit. Here are some things I've learned by trial and error with David, our respite provider.

I was talking to David's boss about how things were going and because I know what I'm thinking only after I talk about it, I learned a lot of things by having this conversation with him. There were a few areas that I couldn't put my finger on as to how they needed improvement.

The first couple of days David was here, during times where neither Dean or I were talking, David would fill the space with questions or stories. I realized that to be Dean's caregiver you have to be comfortable with silence. Dean can't take constant noise and silence provides him with needed rest. More than just silence, I realized, a caregiver needs to somehow direct their energy in a non-outward direction. In other words, even when someone is silent, if their energy is outwardly focused you can "feel" that they're antsy or like they need you to entertain them. I finally realized that David needed to bring a book or laptop or a project of his own so that when we were in silence he could focus his energy on his own thing. WOW did that help! David's boss conveyed that to him and on the fourth day he brought something to read. I actually got things done that day and Dean did well. I felt like David could take care of himself over there.

Something else I discovered is that it would be helpful if David was watchful of when Dean left the room to get away. If David noticed that, he could ask me "Is there anything I could have done differently"? and that would allow me to give constructive criticism if I had any. Sometimes I would say "no, he just had a hard night last night" or I could say "yes, we have to make sure he has it quiet when he's reading something" (as an example). But if David were to ask that question, I could just tell him honestly and he could learn how to help Dean better.

The last thing I figured out was to tell David that Dean can only handle 2 inputs at one time and that that is his limit! A third input would overload his circuit and he'd not be able to think or talk and may have to leave the room. I explained to David that if little Dean is making noise in the living room (input 1) and David was asking Dean a question (input 2) and then a helicopter was flying by outside, that David should pause his talking until the helicopter was gone. This helped David greatly!

I am definitely taking note of all the little things that help Dean so that whenever we have different respite providers in the future we will have a better grasp of the tips that are helpful for the caregiver.