Burn Out

What is burnout?

Burnout is a state of emotional, mental, and physical exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed and unable to meet constant demands. As the stress continues, you begin to lose the interest or motivation that led you to take on a certain role in the first place.

Burnout reduces your productivity and saps your energy, leaving you feeling increasingly helpless, hopeless, cynical, and resentful. Eventually, you may feel like you have nothing more to give. When you’re burned out, problems seem insurmountable, everything looks bleak, and it’s difficult to muster up the energy to care—let alone do something about your situation.

Post-Vacation Payment

We returned home from our 8 wonderful days in Galveston, TX on Tuesday night around midnight  after spending 13 1/2 hours driving, flying, airporting, and driving again to get home. Since Wednesday Dean has been like a person on drugs or something. He is weak and can hardly walk upright, he's incoherent and is so fatigued that he's close to breaking down into tears. It's so hard.

Vacation: not what it used to be

Vacation doesn’t mean what it used to mean. Dean and I used to love taking trips together! We would dream of one day when our finances were better and we’d see more of the world. Now vacationing looks like this: Dean stays at the hotel most of the time because he’s so easily wiped out. I go find things to do with the kids. Dean says that if he can feel relaxed then a vacation is not a waste to him, so that’s good because being at the hotel is how he seeks relaxation. For me, vacation is about getting to see the sights of wherever we are. So now, vacations are another time where I’m lonely. I hope that one day the disappointment of our situation will wear off. It makes it sting more when people hear we are going on vacation and they so happily say “Have fun!” or they impart some message of how lucky we are to go on vacation….uh…sure….not. I wouldn’t consider us lucky. We are blessed, yes! But lucky? Not quite.

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.