Locked Out, or is it Locked in?

 Approximately 12:15 in the morning I became trapped in my bathroom for two and a half hours.  After helping me onto the thrown, my personal assistant, Beth decided she needed to go and get something from her car.  As soon as my front door closed behind her, my heart started racing.  Did she make sure the door was unlocked?  I didn’t think so, because she had slipped outside way too fast.  Why didn’t I have her wait until I got out of the bathroom, I berated myself.   If I had Beth wait, I would have been in my wheelchair and therefore able to open the door for Beth.  Then I could get myself nicely into bed, where I desperately wanted to be!  Sure enough, after a short time she pounded on my front door saying  she had locked herself out!  This is not the first time Beth has locked herself out of my place; I would think she had learned a lesson! 

I spent two plus hours trying to talk myself into getting off the toilet, opening the bathroom door, and then knee walking to my front door to open it.  Up until my mid teens I knee walked everywhere at home.  I would hop down off chairs, recliners, and sofas, land on my knees, and go do whatever was on my mind.  It wasn’t enough to just knee walk, I felt the need to run on them 75% of the time.  Family members grimaced every time they saw me running, and they would warn me that I was going blow out a knee one day.  I just thought like many kids do, that I was invincible.   

Most of my pants were worn thread bare at the knees.  It is safe to say, that when I got into high school,  I did not think it was cool to have pants with thread bare knees.  I started spending more and more time in my wheelchairs, which I told myself I would never do.  On top of that, my knees began to deteriorate, so I really had no choice, but to use my wheelchair full time.    It has been at least twenty-three years since I have spent large amounts of time knee walking.   My knees ached just thinking about walking on them again! 

If I was really going to be the heroine of the night, I needed to do a couple things first.  I wanted to pull up my pants, because if I did work myself into jumping off the toilet, and fell flat on my stomach, I wasn’t about to be rescued with half  massed pants!  I pushed myself with my legs up into an arch above the toilet, and with only my right hand, I inched the pants up.  Having my pants up served a duel purpose.  One.  My bum was no longer cold!   And two, I had an extra padding around my knees.  However, I wanted a softer landing strip, so I pulled the rug in front of the toilet over to the side where I would land.  There still was maybe a foot of bare floor between the rug and door.  I didn’t like that, so I tried pulling the hand towel down.  I thought I could kneel on it, and sort of slide within reach of the door knob.  I could barely touch the bottom of the towel, but I couldn’t grasp it firmly enough to yank it down.   So, there I was afraid I would harm myself by doing something I did thousands of times as a kid!  It definitely sucks growing older sometimes!  

Meanwhile, Beth went to find my apartment manager, but could not arouse either of the two on-site managers.  My neighbor was still up, so Beth told her about our plight and asked if she might use her phone.     She tried to call anyone she  could think of to come help us, only two people responded, and they didn’t  know how to help!  She even tried calling 911, but they didn’t think in an emergency.  How did they know it wasn’t truly an emergency?  By that point I could have fallen off my thrown, and had broken a hip!  Instead, they advised her to call a locksmith, and that’s what she did.  The man wanted $175 dollars to open my door!  

 There is a new rule I am enforcing in my home.  My personal assistants can not go outside when I am in the bathroom.  If they absolutely have to go outside, they have to make sure to take the apartment key, and or make certain the door is unlocked!  I will train everyone on


It’s apple season!


My sister brought me a bag of apples from the apple tree in her yard.  I got down to just a few apples, like maybe eight.  I wanted someone to make me an apple crisp.  One person said that I didn’t have enough apples, that I should just make apple sauce.  Then another personal assistant came.  I asked her to make apple sauce.  She said “I don’t know how to make apple sauce, but I will make you an apple crisp.”  I told her that she was speaking my language!  I am forever amazed that what someone deems impossible, another thinks possible! 

Posted at 3:16 PM by useuraac@yahoo.com

How I live with extra arms and legs

I have been living in the same  apartment for the last fifteen years.  Since I physically need assistance to get through my daily life, I hire live-ins or roommates.  So far, I have had nine roommates during  those fifteen years.  I think that is a fairly good average. 


Some of my roommates have stayed just a short time, like eight months to a year.  While other live-ins have stayed two or three years.   Of course, I did not want to see most of these women go!  While other times, I couldn’t wait to shut my front door behind them! 


This may sound bizarre, but even if they were the worst live-in, whenever any of my live-ins   decide to move on with their lives, I feel like my arms and legs are amputated when they leave.  This is because my personal assistants have literally  become my arms, legs, and sometimes my voice.  I have been with these people for a time, and I have trained them to help me in certain ways.  So, when they leave a big hole is left for someone else to fill. It takes lots of time for gap to close. again.   When new personal assistants come; I am not just working with them to understand me, I work extra hard at communicating my wants, needs and preferences, until they become second nature to them.   Slowly,  as the new personal assistants gain my trust, my limbs grow back. 


 I have been without a live-in for about fifteen months now.   I think the longest I have gone without one is just short of two years.  Live-ins are not easy to find, because they have to give up a lot of their time just to help me live my life!  A regular live-in shift starts at 5:00pm and ends at 8:00am.  I am suppose to have a day time worker from 8:00am to 4:00pm.  Then the live-in person works three weekends a month.   I know that these hours are a huge sacrifice for anyone, and so I am grateful whenever someone even considers  taking the job.  


What happens when you do not have a live-in?  That’s a very good question!  Usually I get people who are on-call.  These are women who usually  have worked with me before.  I much prefer it this way, because naturally my day goes a lot smoother!  It is no fun opening my door to a perfect stranger, and knowing I have to train them to  work with me on my own, However, once in a blue moon, it does happen.  On days like those, I know nothing I have planned on doing that day will get accomplished except for basic things like eating and using the bathroom.  Keep in mind these people are perfect strangers to me, I like to have them within eyesight of me, because I do not want them looking through my things and taking stuff!  So, what happens is I talk to them the whole day using my communication device, and get to know them really well!  At the end of the long day like what I have just described, I fall into bed totally exhausted! 


The hardest thing about having on-call people working for me is that the schedule of who is working when is constantly changing.  I will go to open my door thinking I am going to see a certain person, but a totally different person stands in front of me.  I try to act pleased to see the unsuspecting personal assistant,  and then I readjust my  day according.  You know, there are some things I want only certain people to do for various reasons, mostly trust.  However, some people have better skills than others.  For instance, would you let anyone help you with your finances?  Of course not!   Now maybe you can understand why and I am disappointed when that certain person I am counting on is not the one  I let into my home!  However, I try to make the best of the day! 


On rare occasions no one will show up for the next shift.  Sometimes I let the person getting off work go early.  If the next personal assistant does not show up in a half hour, I go through the process of calling for help.  I call my sister, because she understands me the best.  Next  Carol will call the manager over Support Living, and tells them what is happening.  About fifteen to twenty minutes later, the manager will call me, and tell me what happened to my personal assistant, and what to expect  next.  Usually someone is here within the hour.


The last time nobody showed up was two months ago, and the reason for it, was that no one was scheduled.  I think that was the first that has happened!  My night personal assistant was asked if could stay until ten, however she could only stay until 9:30.  I made sure she helped me to the bathroom, get dressed, and to eat a little breakfast before she left.  The next time someone showed up at my door was at 1:30.  I can be alone for three hour, but anything over that is pushing the limits. 


There were two people at my door when I opened it.  This could only mean one thing, I was going to be introduced to someone new, and soon be left with her.  My first mission was to use the the restroom!    After that the new person was given a quick tour of my home, and a few training instructions.  We  were left to fend for ourselves. 


My second order of business was to eat; I was starving!  I thought there couldn’t be anything easier to fix then Cambell’s Tomato soup, and grilled cheese.  The woman didn’t know how to open a can of soup, much less then prepare it!  Don’t let me start  describing the grilled cheese disaster. 


I snapped!  I was tired of not having up-to-date schedules of who would be here and when.  I was tired of not being able to do the things I needed to do, like go to work.  And finally the straw that broke my patient self, I was sick of training new and very inexperienced personal assistants!  I wrote a direct, but polite e-mail and sent it to everyone I knew who had a say in my direct care services!  I did not expect much if anything to happen.   


However, I was amazed by the enormity of the changes that came!  A new assistant manager was hired, and I got three personal assistants that will work throughout the weeks, until I hire a live-in.  So, I have two personal assistants sharing the weekday shifts, and a weekend person.  Within two weeks of  sending the e-mail, I was busy training all four of these people separately.  Of course, one of these assistants did not stay, so I trained a fifth person on short notice!  I have no doubt I will be training at least two more people before things start settling down! Would anyone like to take over being me for a week, while I go on a much needed vacation?    


I promise I am almost finished with this post!  In addition to three daytime personal assistants, I also have three nighttime people.   One works Monday through Thursday nights,  My sister works Friday and Saturday nights, and another woman spends Sundays with me.  Having my sister working with me is nice, because it gives me some stability.  Plus, I have her do some things that I only trust her with.  So, I am trying to keep track of six personal assistants, and myself!   


I have lots of stories about my personal assistants, so stay tuned!

Posted at 10:08 AM by useuraac@yahoo.com