Health Care: It Should Mean Something To You!

What does health care mean to me?  It means quality of life!  It means being able to go to the doctor and dentist when I need to. It means living in the home I do, and being able to have 22\7 personal assistant care. It means being able receive the tools such as my power chair,  communication device, eye glasses, strategically placed grab bars around the house,  shower chair, and manual wheelchair; all of these things make me as  independent as I am.

It was clear I had a disability from the traumatic birth I went through. The real question of just how disabled I was had to wait and be seen until I grew. However, the doctor told my parents that there was an institution called Fairview that I could go to. My parents didn’t give it a thought, and kept me at home.  All through my childhood my mom was able to get me the help I needed when I needed it. A contact of mom’s got me seen at Shriner’s hospital, Shriner’s sent me to Child Development and Rehabilitation Center, where I received my first physical, occupational, and speech therapies. I was born the year after the Higher Education Act of 1965, and that ensured that I received “financial assistance” for the special equipment I needed to get my education.

I believe that without my family’s support and the timely medical care I received early in my life: I wouldn’t be the person I am today!  I also know that if people are not personally disabled or are attached to a person whom who is living with a disability,  they may  not understand the importance of specialized health care for individuals who have disabilities. Be aware, be involved, be an advocate!

 

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Praise For “Speechless”.

I should have sang this past Fall’s new show on    the network ABC:   ‘Speechless’  way before now. However, the episode I recently watched,  entitled “D-I- ING” had me laughing so hard I was crying and my belly hurt from being in such stitches. I just can’t stay quite any longer!

First off, “Speechless” is a half hour comedy about a family. There’s the parents and three kids. The oldest kid JJ has CP.  The Premier kicked off with the mom announcing to the kids that they were moving to another in a long line of schools. This school was going to be different in the fact that JJ would have a full-time aide who would read his communication board for him, and thus he’d have audible  voice. The thought that ran through my mind was, why didn’t JJ have a communication device that had voice out-put?   I quickly reflected that it’s up to the individual’s preference as to how they want to communicate, and maybe JJ feels more connected and communicates faster when people read his board with him pointing to the words he wants with his laser pointer  Not to mention the fact that JJ uses the laser pointer in numerous ways; he’d be lost without it!

JJ’s family seems over-the-top; especially Mia, his mom.  However, she’s just passionately fighting for the rights and services her child needs?  Parents who have children with disabilities should be praised for knowing their child’s  needs.  Not have the school administrators cringe at the sight of caring parents marching down their halls in determination.

Take for instance, on the kids first day at the new school, Mia was disappointed to find the only entrance into the school JJ could use was a ramp at the back of the school.  Oh, how I can relate; I’ve entered plenty of buildings through egress of back door ramps made solely for the ease of taking  out garbage.  Just after all three of her kids entered the school via the “back door”,  Mia who was complaining her son had to enter school via the garbage ramp, seized the perfect opportunity to teach the principal a lesson.  Out came a janitor (Kenneth) with a cart that held half landscaping supplies and  garbage.  The crazed mom played, Trash Or Person with the principal.  First she pretended to shake Steven Hawking’s hand, then she preceded by holding up objects and asking if they were trash or person.  When Mia asked the principal if she was trash or a person, she was so overwhelmed by Mia, that for a second she didn’t know how to answer.

Things I like about the show;

When JJ’s new aide turns out to not be the “right fit”.  JJ finds someone he likes, gives him an impromptu interview,  and hires him.  His choice of an aide was accepted by everyone involved; much to the chagrin of Mia, who got off on the wrong foot with Kenneth.

I love that JJ’s siblings are always around and willing to read his board for him.  Also, when his ill-fitted aide questions JJ’s input in his family’s conversation.  His dad off-offhandedly took a second to correct her, that JJ’s comments were wanted and appreciated.

Things I have trouble believing about the show:

I never had my aide come home with me after school or on the weekends, except on rare occasions for some milestone party. The fact that JJ’s school aide helps out at the family’s home is pure luxurious fiction on the shows part!

JJ’s family always seem to be around to read his comm board. My family didn’t do that. However, often when I was totally immersed in typing a school report, or my own personal journal, I would be startled to feel hot breath on my neck as members of my family read my words over my shoulders.

JJ’s family uses his disability as an excuse to act slovenly.  I don’t understand that, at all! My family never did that!

It’s a half hour show, geared for fast pace, funny story lines.  Sometimes it takes me a whole half hour to communicate a thought.  JJ’s rate of .communication is way too fast for someone who accesses his communication device via an inferred laser head-pointer.

However, everyone needs to understand this point; every episode of Speechless has two or more nuggets of truth in them.

In the episode, “D-I- ING”, the family is shopping at a new store for them because its the only store that carries an ingredient that  Ray (JJ’s brother) needs for a graded school project.   Well, as it turns out Ray accuses Mia of dinging the passenger door to the car she parked by, and they’re  thus occupied bickering over that.  Jimmy (JJ’s dad) sets out to prove to Dylan (JJ’s sister) that he can deliver on a promise, and the pair team  up in that quest.  JJ is left alone to gather his portion of the shopping list.

During his time in the store, a number of people asked JJ if he had a license to drive his power chair. Right after the first person asked JJ that question Dylan bet JJ on how many people would ask that same question.  The only person who caught JJ’s eye-roll after asking that question was the guy behind the meat counter.  Then he acknowledges his for-paw, and JJ accepts his apology.  The next second meat counter guy witnesses someone else’s greater mistake.  A fellow shopper, engrossed in talking on his phone, absentmindedly uses JJ’s chair controller to move JJ out of his way.

JJ who suddenly finds the offending shopper’s grocery list in his lap, schemes to be a real obstacle to the shopper. JJ’s antics are totally unrealistic at times, but non-the-less I was right there rooting JJ on. Where was Kenneth in all the mayham the family was causing? He was there managing to save the day.  Pun intended!  Just watch the show already!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Between A Rock and A Hard place

On May twenty-seventh, by phone call, I was told I had to cut two hours a day of my 24 hour care. The two hour alone time went into effect that following Monday. I wrote an email, of course, with all my concerns, but the email was more about my feelings as to how it was brought to my attention. I made a snap-ish decision based on my comfort level. I went with taking the two hours at night, since I tend to have an active bladder in the mornings! But after I had time for the new schedule to sink in, a lot things started popping into my head. I would have to be more regular about when I eat my meals. Regulate when I drink. Plan to go to no more late night parties, concerts, movies, or plays. Unless I go with friends or family. In general, I will need to be more vigilant about how I use my time with my PA’s. I changed the two hour time block, to a hour one each end of the day. In case you haven’t added up the hours being cut, it adds up to fourteen hours per week. This is doable, I will make lemonade out of the lemons

Not more than two weeks into my “new normal” I got a call from the lead supported living manager saying she wanted to meet with me, along with my sister and another bigwig at the agency that supports me. She wanted to have the meeting on Thursday, but was thrilled to tell her that I work Thursdays! At first, I just thought they were coming to talk about my email, however, I knew it wasn’t what the meeting was solely about. In my gut of guts, I could see the axe lowering on my neck! Long story cut short, this agency has been eating $87,000 over the top of the monies I get from the state and federal budget. They have been eating the money because my sister is a loyal employee and they didn’t want to lose me. $87,000! I want to puke every time I think about that kind of money being spent on my care! Of course, the agency can no longer justify shelling out that money on me. SO, I have big decisions to make, and set into action, by August first! Lots of asinine and horrid suggestions were thrown on the visionary table for me to “ponder” over.

Here are my options so far. Move to another agency with a supported living program. But with everybody facing budget cuts, what are the chances another agency will take me into their program? I could downsize everything I own and move back into a group home. Not a thrilling option! Really not an option, unless it’s something totally appealing, which is very unlikely.

Nobody wants me to lose my apartment, however, this means I will have to stretch myself beyond what I ever dreamed I could do. Like staying alone eight hours at night, and installing a bidet. Hand and hand with the bidet idea, I would wear a gown that would spread open as a person sits down. In theory I would go commando at night. If I should have the need to use the toilet at night, I could transfer myself onto the thrown, do my business, use the bidet to clean myself, probably sit there to drip dry for a spell, and transfer myself twice more before getting into bed. When I calmly reminded them of the fact that most home accidents happen in the bathroom, they replied that they knew, and would equip with a “help I have fallen, and I can’t get up” necklace. Oh, so fancy! Fat chance the necklace would do me any good if I fall, crack my skull, and bleed to death. it’s as if the agency is banking on me getting hurt, and possibly becoming further disabled. If that’s the case,… Never mind, if I write that thought, it might come to fruition, and I wouldn’t be me anymore!

Actually, What it all comes down to, by August first, they’re hoping to trim 14 hours of paid PA supports from the day. Eight or so hours at night, and four hours during the day in addition to the two they have already removed earlier this month.

They said they were willing to buy technology that would increase independence, as opposed to having human PA’s. I was also encouraged to look at other agencies.

The way supportive living was set up to run in this agency, was to have the person going into the program interview an already pre-screened person that was interested in the job. If the two people thought they could live together, the live-in would get a flat stipend each month, live rent and utilities free, get one evening a week off, and one weekend per month off. You’re smart readers, can you think of some problems that might arise from this type of living environment? Regardless of its obvious deficiencies, I have been open to this situation for years and yet have gone four years without a person willing to fill this live-in position. Now the agency has given me about six weeks notice to find a solution and are pretending that this is one of the options.

Okay now, at Tuesdays meeting, lots of ideas were tossed at me. The following idea is just really asinine! There is a long standing relationship between a woman and her live-in. Let me say that I think most people would find it taxing to live with the person served.. With this in mind, the idea would be to ask each woman separately if they would be willing to forgo the apartment and the life they have built together to move into a bigger place, and be open to live with a man who is also in the program. If the women and the gentleman agree to do this, and if the agency’s accountant can get the numbers to work, the agency would buy a duplex. The three would live together, and I would live on the other side. There are a lot of ifs in this plan! I think my chances of becoming a millionaire are greater then this duplex idea! I say don’t mess with a good relationship!

I know what is happening here! I’m not a fool! They gave me all these unrealistic options, in the hopes I will pick the option that is best for them This is the oldest tactic in the book for dealing with disabilities! Do I have the strength to fight for my independence? .

No, I’m not dreaming. I just asked my PA to pinch me, and I didn’t wake up!

Please comment .orgif you have any ideas for how to deal with this situation. Its imperative that I do something very soon, before I am forced out of the supports that enable my independence.

Isn’t it incredible what people invent?

Check out the following link.

http://wistechnology.com/articles/5959

Maybe I need one of these helmets! I could simply think of what I want to type, and it would magically appear on the screen. Lately I have lots to write about but little to no energy to do the actual typing. I would most likely jamm the device up, because of my rumbling and tumbling thoughts.

Never mind! At second look, I would not like to wear the helmet! I like my hair to look nice whenever possible, and sweaty helmet hair is one of the worse looks in my opinion! If I could not communicate anyway else then I would adorn the helmet and be appreciative I had it.

There is A First For everything

8/18/2008

I thought I would try putting together a slide show to go with my presentation on Self Determination.  I selected certain pictures throughout my lifetime that showed me being determined. 

 

This little project of my concoction proved to be very maddening for me.  I wanted the pictures to be in   chronological order.  However, because I had a couple pictures that were different from the rest, one was a poloroid picture and the other one a cut up picture taken from a scrapbook, the order was all mixed up.  Try as I might, I couldn’t get the CD to save the photos in the sequence I wanted. 

 

I had my personal assistant take the CD back to the store to see if they could help her get the prints in order.  The clerk sent her back home saying that we could arrange the pictures at home on my computer, and then e-mail the file in the correct order to the store.  I could then pick up the CD by 10 AM the next morning.  I was to give my presentation at 1:30 that same day!  After I finished calculating all the times I needed to be where, I realized it was possible to pick up the CD and still arrive at the Partners In Policymaking class well ahead of 1:30. 

 

When I went to pick up the CD, I insisted on previewing the CD before I bought it.  My heart sank; the photos still were not in the right order.  I was upset beyond upset.  I did not want to pay for the second CD, but in my hurried state, I just paid for the darned thing. 

 

I arrived at the class while they were breaking for lunch, which was fantastic because I had not taken the time to eat breakfast, and I was hungry.  However, I barely ate much, I was too concerned with what I was going to do with the slIde show.  I considered not using it.  Then when the class resumed, I suddenly had a brilliant idea.  I had maybe forty minutes to pull it off, while about five of the participants from the class gave presentations centered around their lives. 

 

I catched bits and pieces of the presentations.   One woman said she had thought about making a slide show, but she believed it would cause her too much frustrattion.  I wanted to shout, “Amen, I hear you sister!”  She went on to say that she just took her pictures, frames and all straight from the walls of her home.  I thought, why didn’t do that!  What was I thinking, have few pictures to share.  trying to pull off a slide show, when I obviously had no idea how to do it? 

 

This is how I presented the slide show: 

 

I have a few pictures depicting my determination over the years  for you to view.  These  pictures are not in the order that I want them to be in.  So, you can see if you can figure out what pictures I’m talking about.  

 

I lived on a dairy farm.  My 4H project taking care of a Guernsey cow. 

 

I graduated from high school. 

 

I dreamed about getting a dog.  I ended up raising a dog.  His name is Duke. 

 

My aunt decided that I could drive their tractor, and so with a little persuasion, I drove it. 

 

I went to Hawaii, and had a fabulous time. 

 

I went to the beach, and if you have ever tried to take a wheelchair on the beach, you know it takes determination!  Not forgetting the fact that it was near freezing that day! 

 

Side note:  I have not included my graduation picture here, because it’s black and white and I look terribly

Speaking on Determination.

8/1/2008

I had the pleasure of speaking to the Partners In Policymaking class a few weeks ago.  This class is sponsored in part by the Oregon Council on Developmental Disabilities.  The purpose for Partners In Policymaking is to educate parents, self-advocates (people with disabilities), and professionals who work in the field of disabilities, on how to be effective advocates in our lives, communities, and state issues. 

 

As an alumni of this class, I was thrilled to be asked to speak to the group!  Of course, I had a limited time to speak, so I kept my stories brief, however here on the olog I have expanded some stories, because I can!  Happy reading!    

 

I am here this afternoon to talk about self determination.  Do you know something?  I have heard the term, self determination a lot over these past fifteen years.  I have even been asked to define it while I was taking the first partners in policy making class.  However, that has been a while ago, so I looked up the words.

 

First, I looked up, self.  self, a person referred to with respect, a complete individuality.  A person’s nature, or character.  I love the next definition of self.   The ego that knows, remembers, desires, and suffers.   Looking up determination. I found it means, the act of coming to a decision, or settling on a purpose.  So, putting the two words together they mean.   by oneself without any outside influence.  Freedom to live as one chooses, or to act, without, consulting others.  Determination means, being resolute, and purpose driven.       How do I define  self determination?  It’s a passion to have a good life!  A strong drive to work hard to fulfill a goal. 

 

My mom is a great example of being self determined.    I grew up hearing about how she had to relearn everything after having Polio. When she had me, the doctors believe she had a stroke.  Once again, she found herself fighting  back to regain her abilities and  strength, so that she could continue raising her five children. Mom also showed her determination time after time as she fought to get the services I needed to grow into an independent woman.  Although, she claims that every time she turned around, someone would open the next door for us, I know  she spent a lot of time calling on the phone looking for the things I needed. 

 

I showed Mom that I had determination, too.  She thought I was purposely knocking my cough syrup out of her hand as she brought it to my lips.  However, I didn’t have much control over my left arm back when I was little.  Whenever, she came close with a spoonful of syrup, I could feel my body getting stiff, and then as if I were a marinate puppet, I felt my left arm flying crazily about.  I know it must have looked like I was trying to get out of taking the cough syrup. 

 

The truth to the matter was,  I hated feeling sticky, and I tried to avoid it at all costs.  I couldn’t understand why my Mom didn’t see that controlling my left arm was difficult for me.  At the same time, Mom couldn’t understand why I was being such a brat about taking my medicine.   The next time I saw Mom coming with a spoon and cough syrup, I was determined to show her that I didn’t mean to spill the sticky stuff.  Just before she reached me, I purposefully grabbed my left arm with my right hand, and held it down firmly.  Mom’s eyes grew big, and she asked, Jan, are you trying to tell me that before now, you couldn’t control your arm.  I nodded, and I was instantly forgiven!  Mom started laughing, and I soon joined her. 

 

I feel richly blessed for being able to live and grow with my family. Everyone treated me exactly the way they should: I got lots of love.  I was teased mercilessly by sisters and brothers.  My sister thought it was unfair that she had to clean the house, while I didn’t have any house hold chores. So, when Mom went grocery shopping, Carol would make me dust the furniture.  I loved that she thought me capable to do something. 

 

When I received my first power chair, my brother decided he would make sure I knew how to drive it.  Paul built an obstacle course on the highest part of our backyard.  If I went too close to one side, I might have gone over a two foot wall.  If I had gone far in other direction, I would have toppled down a rutted hill.  He wouldn’t let me go anywhere in public until I mastered the obstacle course, both   forward and backwards.  I took on his challenge.  I was determined to master the course within the week.  I think by day three, I had his permission to drive the power chair in the community.    

 

In January of my senior year of high school, Mom was in a near fatal car accident.   Both of our lives were changed forever that day.  Mom spent three months in the hospital, and another two in a rehabilitation center.  I suddenly went from Mom being my only care giver, to about five different people helping me.  Somehow I made it through to graduation.  My Mom made it home just in time to witness me graduating.  Mom made great strides in recovering from the accident, however she never regained her full mobility. 

 

Due to Mom’s accident, I was placed at the top of the crisis list.  I lived at home for another year.  Then a opening   at a group home, made it possible for me to move.  My brother invited me to live with him and his growing family.  I never wanted to live in group home.  So, my decision was difficult for me to make.  I finally decided that it was in everyone’s best interest that I move to the group home. 

 

I only had one thing in common with all four of my roommates.  We all were considered to have severe disabilities.  Fortunately, I always had a room to myself, where as everyone else had to share rooms.  I didn’t think it was fair, being as I was the newest resident in the group home to have her own room, but I sure  didn’t protest the matter. 

 

Living in a group home was not a picnic.  Five people needed to share two staff most of the time.  When there was a less then desirable staff on duty, everyone would request the more desirable one to help us.  If I needed some help to take care of a broken finger nail, which I can not stand to have, because I dislike it when the nail snags on my clothes, or scraps my skin.  I would usually have to wait until a staff was free to help me.  Typing is a lot easier with nicely trimmed nails! 

 

If we went out, it was usually as a group.  This may sound a little snobbish, but I didn’t necessarily wish to be in public with my house mates.  I preferred going out with family and friends; the people I felt more connected to.   However, I needed to get out of the home, too!   

 

We had to eat most of our meals together.   After dinner, the next logical thing to dowas to get everyone ready for bed.  I am a bit of a night owl.  So, I wasn’t not too keen on the assumption that I would go to bed before eleven.  So, I made a compromise with.the staff.  I needed to get ready for bed by ten, but I could go to bed whenever I felt like it.  And, since I could get in and out of bed by myself, I could literally go to bed whenever I felt like it. 

 

It’s needless to say, I spent most of the time in my room.  I had a computer that I did stuff with. I paid to have a phone in my room, that way I could call Mom or one of my sisters whenever I needed to hear a friendly voice. 

 

I made a decision, that I learned to regret.  As morbid as this sounds, I got into the group home, because someone past away, and I took over their spot.  The person had gone to a vocational work shop during the day.  I was given a choice, between going to college, or the vocational work shop, which I critically dubbed, the day care program.  I did not feel I was ready to go to school.  I didn’t know what I wanted to work towards career wise.  So, as dumb as it may seem, I picked the day care program. 

 

I was reasonably content being there for about five months.  Until I learned the vocational work shop was going to merge two completely different groups together.  The original group consisted of people who were physically disabled, and the other group of people were cognitively disabled.    I didn’t see the logic in putting these two different groups together.  This new group of people were known to have emotional outbursts.  I mean, it wasn’t uncommon for someone to get so upset that they would throw a chair across the room.  I could just picture someone getting hurt who could not physically protect themselves.   I was determined not to let it happen to me, that’s for sure!  

 

I stated my concerns to the management at the vocational program.  I was told that they understood my worries about the merger, however they felt confident they could control the new atmosphere.  I quickly decided that I would prefer  to go to college, after all.  Guess how long it took me to get out of there?  It took a year!  Can you believe, that? 

 

I think they didn’t want to lose the money my services brought in.  Most of the time I refused to go to the vocational site.  This made the group home rearrange staff for the times I stayed home.  The day care program brought in someone to test my skills.  I suppose they needed to be certain that I was too smart to be stuck in some musty old work shop.  I scored extremely high on all of the tests, except on the math test.  Try typing, and solving math problems on a typewriter, and you might be a blockhead, at math, too. 

 

I was finally released, but not before an emergency ISP meeting, with my team present to confirm the decision to setting me free.  I went to my local Community College where I took lots of writing classes, and for a time worked on the college’s newspaper, writing articles.   

 

In the middle of all the day care program drama, there was an opening in another group home more suited for me.  The decision to move was an easy one. I still spent the lion’s share of the time in my room, because I now had homework to do.  However, I socialized more with my new house mates.  

 

I wasn’t in the new group home very long when I learned about a new program called, Supportive Living.  I could live in my own apartment, with a personal assistant.  I could eat when I wanted, and go out and do things when I wanted.  I didn’t even think about it, I put myself on the waiting list to get an apartment. 

 

The process of actually finding an apartment that was fairly accessible was not easy.  When the scouts had five possible apartments, I went to look at them.  The first apartment I saw was completely trashed.  I don’t know why the apartment manager let me see it that way.  Perhaps she didn’t want me as a tenant, because I sure couldn’t live there after what I had seen!  The other four apartments were okay, I just had a hard time picturing myself  living in any of them. 

 

Mom kept telling me about an apartment that was available three miles away from home.   I resisted looking at the apartment, I didn’t think I wanted to live that close to family.  Guess what?  I ended up getting the apartment Mom suggested I check out.  Mom’s have a way of knowing what’s best, in some cases!  I have lived there for fifteen years. 

 

There is a second piece to self determination.  Nobody really wants to hear this, but it’s an element that has to be present.  The element is called, responsibility.  I couldn’t have lived in my apartment for as long as I have, if I wasn’t responsible to pay the rent each month.  I need to make sure I make the time to go grocery shopping, or else I would have no food to eat. I need to make sure I am going to the doctor when I should.  No one else can tell me how I feel.  My list of responsibilities goes on and on.   I could not be here today, if I hadn’t displayed how responsible I am.  So, if you think you can be self determined, without being responsible.  I have some news for you, it doesn’t work like that.  To be self determined, goes hand in hand with being responsible!  However, you can still have fun adventures! 

Posted at 4:16 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