Saturday, June 15, 2013
Thursday, June 13, 2013
Wednesday, June 12, 2013
Saying goodbye: when an aide leaves
Losing a long term caregiver, especially one who has become a friend, isn't for the weak of heart.
It sucks.
There is a bond that forms, a rhythm of give and take, a miraculous dance of interdependence. Even imagining that stopping is painful. And, as it slows down in preparation for the very last steps of the dance, each party falters, tripping, landing awkwardly.
And then there is a moment when, hopefully, a new relationship forms. Perhaps occasionally the old dance of interdependence will appear, neither person missing a beat, its familiarity comforting.
But there is work to be done to nurture the friendship as the primary relationship. Hard work. Just as time consuming as when sandwiches were made, hair was brushed, and food was cut up oh so lovingly.
These memories tug at the heart even when a stronger friendship seems inevitable.
But to imagine the alternative - that the relationship never existed - or to deny its strength - is madness. That path leads to bitterness and ingratitude. It stinks of selfishness.
And yet - losing a long term caregiver can be so painful that one stares down that road a bit prior to moving on. Because saying goodbye when an aide leaves can feel as if someone has died.
Perhaps even a part of oneself. It can be hard to muster up willingness to begin with another, to start that dance of interdependence, to even put on the music.
Necessity dictates one must, at least, make a start.
It sucks.
There is a bond that forms, a rhythm of give and take, a miraculous dance of interdependence. Even imagining that stopping is painful. And, as it slows down in preparation for the very last steps of the dance, each party falters, tripping, landing awkwardly.
And then there is a moment when, hopefully, a new relationship forms. Perhaps occasionally the old dance of interdependence will appear, neither person missing a beat, its familiarity comforting.
But there is work to be done to nurture the friendship as the primary relationship. Hard work. Just as time consuming as when sandwiches were made, hair was brushed, and food was cut up oh so lovingly.
These memories tug at the heart even when a stronger friendship seems inevitable.
But to imagine the alternative - that the relationship never existed - or to deny its strength - is madness. That path leads to bitterness and ingratitude. It stinks of selfishness.
And yet - losing a long term caregiver can be so painful that one stares down that road a bit prior to moving on. Because saying goodbye when an aide leaves can feel as if someone has died.
Perhaps even a part of oneself. It can be hard to muster up willingness to begin with another, to start that dance of interdependence, to even put on the music.
Necessity dictates one must, at least, make a start.
Tuesday, June 11, 2013
Sunday, June 2, 2013
There, not there: training aides
As I currently train new aides, my friends with disabilities are checking in on me to see how it's going. Other than the occasional crash, it's moving right along.
I try to avoid starting more than one new aide at a time, if possible. I also try to go over the routine of the job in pieces rather than all at once.
I'm getting a chuckle at the number of times over the past few weeks items have gone missing in action. Sometimes I just can't figure out where a new aide put something I need. Other times there are crashes because items I need are stacked over my head - and using a reacher just doesn't cut it.
But it can be dangerous if I don't watch new aides carefully. I've stumbled across sharp objects unwittingly placed where I might be grabbing something I need. For example, some aides dry the dishes and put them away while others leave them to dry in the dish drainer. Unfortunately, a sharp knife was left at the bottom of the dish drainer by one. Since I lack sensation and the dish drainer is higher than I can see, I cut myself. So I need to remind folks that if they use and/or wash a sharp object, it's best to put it back into the drawer.
A cardinal rule is: what a person can see standing up isn't what I see from a wheelchair. The perspective is entirely different.
And I know the minute I have an aide who will work out - it's when we have our first chuckle about this. Usually it occurs after he/she has placed a reacher out of my reach - and gone home. Or- as one aide once did- rolled my wheelchair across the room so she could clean, then said goodbye and left. She returned shortly after looking a bit sheepish, and rolled it toward me.
"Great," I said. "I might be needing that."
It's all in the perspective. Hopefully the one thing I never lose while training aides is my sense of humor.
I try to avoid starting more than one new aide at a time, if possible. I also try to go over the routine of the job in pieces rather than all at once.
I'm getting a chuckle at the number of times over the past few weeks items have gone missing in action. Sometimes I just can't figure out where a new aide put something I need. Other times there are crashes because items I need are stacked over my head - and using a reacher just doesn't cut it.
But it can be dangerous if I don't watch new aides carefully. I've stumbled across sharp objects unwittingly placed where I might be grabbing something I need. For example, some aides dry the dishes and put them away while others leave them to dry in the dish drainer. Unfortunately, a sharp knife was left at the bottom of the dish drainer by one. Since I lack sensation and the dish drainer is higher than I can see, I cut myself. So I need to remind folks that if they use and/or wash a sharp object, it's best to put it back into the drawer.
A cardinal rule is: what a person can see standing up isn't what I see from a wheelchair. The perspective is entirely different.
And I know the minute I have an aide who will work out - it's when we have our first chuckle about this. Usually it occurs after he/she has placed a reacher out of my reach - and gone home. Or- as one aide once did- rolled my wheelchair across the room so she could clean, then said goodbye and left. She returned shortly after looking a bit sheepish, and rolled it toward me.
"Great," I said. "I might be needing that."
It's all in the perspective. Hopefully the one thing I never lose while training aides is my sense of humor.
Sunday, May 26, 2013
EEOC Issues Updated Publications on Specific Disabilities
EEOC issued four revised documents in its disability discrimination "Questions and Answers Series," addressing how the Americans with Disabilities Act (ADA) applies to individuals with (1) cancer, (2) diabetes, (3) epilepsy, and (4) intellectual disabilities."...providing guidance as to questions employers may ask, among other things.
Rest of Article here.
Saturday, May 25, 2013
An Aide is Not a Maid : Dealing with Expectations
I'm back at it, training new aides again.
There's the joy of getting to know new people and the sheer hard work and energy output that goes into all of that - plus training often inexperienced people who have never done a care-giving gig. At least for a quadriplegic.
Everyone comes into the job with expectations about what it's going to be like.
I have some folks who come in and think that all I need is a maid - cleaning, for example. They mean well - they don gloves and go at it. You can go down the list - I'm amazed by how some folks define the job! It can be amusing at times, but it just doesn't work if tasks don't get done.
So the first thing I always spend time on with a new aide is: handle expectations. From both ends. I also need to compromise and be realistic about what people can do. It's not a rehearsal, it's real life and it involves expensive equipment and my health and quality of life.
There are privacy issues. Someone is coming into my home. It can feel intrusive when done in a certain way. Nevertheless, the longer I do this, the more I realize I need to give what I'm asking of them - patience, flexibility and understanding. My feelings matter, but there's a lot more involved than that in choosing the right aide.
It's work, quite frankly and a matter of both of us adjusting our sails as we go along.
The first few times a new aide comes over to help, I work closely with him or her. I watch their reactions to tasks and see how they respond to taking direct instructions and/or requests (e.g. do they do what I ask the way I ask or do they do the exact opposite? Do they ignore me totally?). The response I get is important because I need to staff hours here, but I don't want to put someone in a position of a lot of responsibility if they ignore my instructions. That can be dangerous in certain situations. It can mean equipment or food is left out of my reach, for example.
So what do you do if a certain person falls into that category? I assign tasks accordingly and will backup certain aides - make sure I have someone else to call to come in to cover, so I don't get stuck in an unsafe situation. I also work longer with them one on one and give them more time to adjust to the job. Clear communication on my part can help. This includes feedback to them as to how what they do affects me after they leave. (e.g., moving things out of my reach matters.)
There's a limit to how much training I have the time/energy to do, but some of the best aides I've had required a lot of one on one time at first, simply due to inexperience. It's worth it as long as they're willing to learn.
If we can both adjust our expectations and find a common middle ground, the miracle is that it all starts to work. Every relationship with every aide I have is different - and special. My advice to anyone new at this is to be careful not to expect a new aide to be like your last one. Look for the talents in the new aide and nurture those rather than criticize how they're different. We teach people how to treat us and vice versa - so set your expectations wisely.
I remember visiting a doctor's office where he had a sign up that read something like "Do not piss on the person who is carrying you". I'd like to add to that - and don't piss off the person who's paying you to carry them.
An aide relationship will work when both people understand that it's give and take from both directions.
There's the joy of getting to know new people and the sheer hard work and energy output that goes into all of that - plus training often inexperienced people who have never done a care-giving gig. At least for a quadriplegic.
Everyone comes into the job with expectations about what it's going to be like.
I have some folks who come in and think that all I need is a maid - cleaning, for example. They mean well - they don gloves and go at it. You can go down the list - I'm amazed by how some folks define the job! It can be amusing at times, but it just doesn't work if tasks don't get done.
So the first thing I always spend time on with a new aide is: handle expectations. From both ends. I also need to compromise and be realistic about what people can do. It's not a rehearsal, it's real life and it involves expensive equipment and my health and quality of life.
There are privacy issues. Someone is coming into my home. It can feel intrusive when done in a certain way. Nevertheless, the longer I do this, the more I realize I need to give what I'm asking of them - patience, flexibility and understanding. My feelings matter, but there's a lot more involved than that in choosing the right aide.
It's work, quite frankly and a matter of both of us adjusting our sails as we go along.
The first few times a new aide comes over to help, I work closely with him or her. I watch their reactions to tasks and see how they respond to taking direct instructions and/or requests (e.g. do they do what I ask the way I ask or do they do the exact opposite? Do they ignore me totally?). The response I get is important because I need to staff hours here, but I don't want to put someone in a position of a lot of responsibility if they ignore my instructions. That can be dangerous in certain situations. It can mean equipment or food is left out of my reach, for example.
So what do you do if a certain person falls into that category? I assign tasks accordingly and will backup certain aides - make sure I have someone else to call to come in to cover, so I don't get stuck in an unsafe situation. I also work longer with them one on one and give them more time to adjust to the job. Clear communication on my part can help. This includes feedback to them as to how what they do affects me after they leave. (e.g., moving things out of my reach matters.)
There's a limit to how much training I have the time/energy to do, but some of the best aides I've had required a lot of one on one time at first, simply due to inexperience. It's worth it as long as they're willing to learn.
If we can both adjust our expectations and find a common middle ground, the miracle is that it all starts to work. Every relationship with every aide I have is different - and special. My advice to anyone new at this is to be careful not to expect a new aide to be like your last one. Look for the talents in the new aide and nurture those rather than criticize how they're different. We teach people how to treat us and vice versa - so set your expectations wisely.
I remember visiting a doctor's office where he had a sign up that read something like "Do not piss on the person who is carrying you". I'd like to add to that - and don't piss off the person who's paying you to carry them.
An aide relationship will work when both people understand that it's give and take from both directions.
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