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Bad Exp. w/ Caregivers thus far

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    Bad Exp. w/ Caregivers thus far

    Ok...I am 7 months post..I have had 4 different caregivers throughout the last 4 months. I am curious as if it is something I am doing wrong, or if it is just the way the turnover is in this industry. All but one of them reeked of cigg. smoke( and I am a smoker) to the point where I wanted to tell them about it, and I would constantly have to tell them to wash their hands before performing any routines( they always wore gloves, but reguardless) I am also wondering since i have medicaid( i havent gotten medicare..i guess it will take about another year) am I getting the brunt of the aides? I am so picky, especially when it comes to b/b, and i feel that i SHOULD be, because of the horrors i was told could happen to me. I just feel like a nuisence at times, because if i have to page someone due to an accident or something, and they have to come, it is never without attitude and smokey smelling hands/clothes. 2 of them never worked with SCI pt's and were only briefed on it before they came to my home. it is bad enough to be 18 and a quad, but to be treated with such disrespect when i am already feeling rock bottom is just wrong. sorry guys, i just recently found you, and i am looking for some answers:-) your input is welcome. OH! and one more thing, this woman who came to my home at 530 am kept complaining at how tired she was and after my am routine, she obviously put me back in my chair for the day, not bothering to pick up the vent brush she threw there after my shower. long story short, i sat on the brush for 4 hours and didn't even knoww..thank god is had a protective garment on to brace that brush, wouldnt you think?am i just making a big deal out of nothing?

    You are definitely not alone in your experiences. But look on the bright side, you apparently haven't been stolen from or left to spend the night in your chair b/c a caregiver quit without notice -- yet. Hopefully those things won't happen, but be prepared. You're only 18 and you've got many many (many) PCA's to go through. You'll probably have many who suck, some who are decent, and a few who are reliable, respectful, and pleasant to be around. When you find the latter, be thankful and try to keep them as long as possible.

    Good luck.



      You're not alone.

      Is it possible to hire someone for room and board?

      are you headed to school? Maybe that'll give you another option as VR wouold pay for your attendant care as you go to school if you live on campus?
      Get involved in politics as if your life depended on it, because it does. -- Justin Dart

      I shall not tolerate ignorance or hate speech on this site.


        I am very sorry to hear about your experience with caregivers who do not have respect to others, unwillingness to learn and lack of intelligent.

        Our caregivers are come and gone too, so far we only found nurse who has the ingredients we're looking for as a caregiver. We are keeping her as long as there is needs for her.

        Some caregivers are only after the money. They do not want to do anything but read their own personal reading materials and sit around.

        I can share with you some horrible experience that will make you throw up, make you uncomfortable, and not to believe with them anymore. Hang in there...there is always one out there who cares and believe in you. Stay strong and keep the faith


          Kimi, you are not alone. There are caregivers who should not be caregivedrs. There are also some caregivers who are great. It is very difficult to find the good ones, but once you do, you will LOVE having them. But, no you are not a lousy boss, and the things you complain about are legit, definately legit.

          I have the same problems of, appropriate smoking and hygine, handwashing issues, and being sure there are no pressure points or objects left in the bed or chair. These things are legit and if not paid attention to, could cause you illness and harm.

          Most likely you have appliances such as catheters, and you have to be clean about working with it. Even though they use gloves, they still have to wash their hands.Asking a PCA politely is not wrong or impolite, you are reminding them of part of their job.

          The vent brush left on your chair and sitting on it all day....not good, is something that could have caused you a pressure sore. I hope they checked you skin thoroughly after that. A pressure sore will have you down for quite a while.

          Smoke smell is something that nonsmokers do not like, but if the PCA smelled so bad that you as a smoker smelled it on her, well, that is BAD.

          First of all, when you interview people, be sure you have someone who you trust and has an instinct for people. I have a dear friend who is a retired nurse supervisor, and she helps me with interviews, hiring, disciplining, and firing. Oh, by the way NEVER fire someone alone, have that trusted person with you.

          I found that if I looked at schools of nursing, hospitals, PT and OT students are very good. They are involved in this stuff because they love it, and will feel it is an oportunity to learn about their chosen professon and help someone they WANT to work with.

          I would also kindly explain to Ms. Tobacco smoke that she has a very strong tobacco odor to her. I suspect she does not have the sense of smell to pick up on this. This done kindly and correctly will actually be doing her a favor too, as she will find she will have less problems socially.

          As far as skin care and stuff left on chiars, beds etc., I would explain it as a very dear friend does. She compares it to the story of the "Princess and the Pea", a story of a princess who had stacks of matresses and pads to get rid of a lump caused by a pea under her matress. It makes the point in a humorous way.

          I would empisize how important it is to keep very clean on their hands as they are working with something that needs to be as sterile as possable. Catheters, and vents are inserted or have tubes inserted in areas that are to be kept sterile. Explain using examples how illness from infection could badly affect your life.

          Even with good PCA's it is important to make up a chore list, and rules (sensable ones), that they can follow, and that will make it so they understand how their day will go. Have a basic schedule they can go by and things will go smoother. Also have a job dicription with a list of things that are part of the job, and a contract regarding disciplary mearures.

          Recruiting is avery dofficult process, and you often get the best PCA's though word of mouth. As other people who are PCA users to see if they have anyone they recomend. This is often the best way to get someone who is good. If you ask another good PCA if they know of someone, they can refer you to someone who is very good.
          Also it would be wise to do a background check on new hires, and set up a probationary period. There are sites on the net that do this for you for a fee, or I would talk with the police chief in your town/city, to eliminate the totally unacceptable ones.

          A really good book is "Avoiding Attendants from Hell", it is a very informative book, with lots of humor, and a better understanding of the PCA management process.

          Yes, you are not nuts, or incompitant, or mean, or a bad boss, it is the way it is trying to hire good people. Beleive it or not, yes there are good people out there, but you must be selective and weed out the bad apples. Once you are settled with good people, you will love the program. But as long as you get the bad ones, it will be a road trip though hell. And defiantely yes, I have gone through that and WORSE. These are just some ideas I have found works for me. I hope this helps and keep the faith,there are badies out there, but there are some great ones out there.
          Disability is not a medical problem with social issues, but rather a social problem with medical issues.
          Franklin D. Rosevelt


            Kimi, I assume from your post that you live in a state that assigns PCAs to you rather than one where you are funded for PCA care and find and train your own PCAs. There are pros and cons of each system, but in the latter it is often easier to get rid of the incompetent, scary, unclean, or unreliable than it is with the first system.

            Do these people have a supervisor? Have you spoken to them? Have you talked with staff at your local ILC about how to "work" the system in your state so you are more likely to eventually find competent and reliable help?

            I can also recommend the book that Tweetybird recommended below. You can find a copy here:

            Avoiding Attendants from Hell

            Please keep posting here. We are glad you found us!

            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


              I think I have to fire my caregiver. This morning was the last straw. I hadn't slept well the night before so I went back to sleep after my bp and shower. I figured he'd finish up around the place and leave. He did. Only he forget to put my chair beside me. I pitch myself onto the floor to grab my phone in the other room. Unfortunately my caregiver (who is 6'4") left my phone ON TOP OF THE FRIDGE!!!

              He's my friend, and I like the guy, but stuff like this happens all the time. He's way too scatterbrained.

              Babies, before we're done here, y'all be wearin' gold plated diapers!


                I am always amazed at the stories I hear about caregivers. Makes me shudder. We have only hired PCA'S twice and were soured by theft.
                If the cigarette smell bothers you try asking them to wear a smock over their clothes while at your home so their clothes aren't so offensive. And explain WHY it is important to wash hands as well as use gloves. Many people assume if they wear gloves it obviates the need for handwashing, so you need to explain it to them. I have always been paranoid about items being put on chair cushion and make it a rule to always set the cushion on end until I put my brother on it. It also keeps the cats off that warm, cozy seat! With a gel cushion it helps to massage the gel before seating, so that keeps the area clear and makes sure it's facing the right way also. You are certainly right to keep your standards, but you need to communicate your concerns so they understand.

                If you like this guy and he generally does a good job, maybe you could just write out a list he can refer to before leaving for the day of things he needs to either get done or maintain or put in reach. I realize that you probably couldn't get to the phone when it is on top of the fridge (?) but call him to come back next time he doesn't "get it"---it might help him remember the next time. My older brother became blind and it took a while before we got in the habit of not moving things around.

                It helps us to have a regular routine so that things don't get overlooked or forgotten. It seems like it is always when there is a rush or domestic upset that mistakes happen. We have agreed to accept equal responsibility now for many things and comunicate why we do what we do. Having things organized in the home makes a huge difference in getting the job done right. Deb


                  I've tried lists, I've called him back for things he's forgotten to do... he regularly forgets to take my keys out of his pocket when he leaves(once he lost them), thrown out or flat out lost medical receipts and documents, leaves bottles of cleAner next to my kid's toothbrushes... he just doesn't think. And after two years, he's still doing the same mistakes and some of them are potentially life-threatening. If I lived in my own house out in the country stuck on the floor with my phone out of reach, what could I have done?

                  On the other hand, he does go out of his way to help me when I'm stuck or need something done outside of his regular hours. And I forget to tell him things, but after two years, I don't think I should have to tell him the most simple things again and again. Anyways, I'll see.

                  Babies, before we're done here, y'all be wearin' gold plated diapers!


                    chris, when I first read your post, I chuckled, cuz it made me think of how I tossed myself out of bed one morning when my PCA was locked out because I forgot to unhook the chain lock type thing and we couldn't find any maintenence person yet cuz it was still so early. I rolled off the bed and onto the hard floor, then dragged myself to the front door...then couldn't reach the lock! Was able to eventually get into closet and get a broom to unhook the bolt. But, this was MY fault for not unlocking that bolt before going to bed.

                    Anyway, ck... maybe because he is a friend that it may be harder to make lines/rules more clear. Seems it leaves certain situations rather precarious for you and more importantly, sometimes dangerous not only for you but your kids. Think maybe you can find another caregiver to work part of the time? So if you decide to completely let him go, the transition will be easier and less of getting rid of him altogether. He seems to be able to help where many pca's might not.. and ptrobably because you guys are fiends. Maybe this will continue even if he was not working for you, depending on how tight the friendship is and how willing he might make himself available to help you in a non-working capacity.


                      Kimi: where do you live?


                        SOunds like the problem is world wide. We live in Perth Western Australia and finding good caregivers here is almost impossible.
                        My partner needs only a couple of hours in the morning to get him ready for work, and we have one fantastic cargiver, who, through circumstance, can only do three mornings a week.
                        Trying to find a replacement for her is so hard. Maybe it's because she is so good our expectations are too high. Another big problem is I resent (yes still) the intrusion into my home, though I'm trying to deal with it.
                        Smokers are a big no-no for me. I can't stand the smell of stale smoke. In the past we have interviewed people who have said they are not smokers, but after a week or so, you find them outside smoking while hanging up the washing. [img]/forum/images/smilies/frown.gif[/img]

                        Phew! sorry that was a bit of an offload, but it's interesting to note that finding a good caregiver is a job and a half for more than just my patch of earth.


                          If you live in Southern California or Nevada and need a live-in caregiver, let me know.

                          The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                          --General George Patton

                          Complex problems need to be solved collectively.
                          ––Paul Nussbaum


                            hello everyone, and thank you for all of your advice and thoughtfullness. i really appreciate you taking the time to give me your personal input on my situation.. carecure seems like it really does care,lol! i have been on and offline these past few days,that is why i havent been able to post a response. i cant even imagine having to fire a friend. that is def. a toughie. it ultimatley depends on your own personal care, and i would have to say bye bye friend..or maybe just make him and on call friend..something...i live in a very small, backwards town where caregivers are few and far between(as well as agencies) i go through UCP. i don't want to change unless i have too, because i will deplete my resources fairly quickly. i just found out that there is a college in my area that actually has housing for disabled, and even has it's own SSCI wing. i am pretty excited about looking into it. i am sure that the caregivers in a setting like that aren't all that horrible. i am sure they have some kind of requirement they have to meet upon them getting hired.(lets hope anyways) we shouls start a "caregiver horror stories" post,lol. thanks tweetie and nurse for referring the book. i am going to check barned and noble or sometime today. once again thanks for the help. talksoon!


                              i forgot to mention i am in pennsylvania:-)