A blog is a place to ask for support, tell wonderful news and share photographs. It is also a firm ground to vent, and today this is what I am going to do for my first post.


The house is very quiet right now but my head is doing its fair share of stirring up a small funnel cloud. Al did go to Day Program today. He started waking up at 4am wanting to get up. Each time I had to tell him it is not time.


He watched TV and I laid in bed under the warm covers listening to the baby monitor and trying to close just one eye. I was still tired. At 9am, the shower gal had still not called. I went in to check on Al and he was crying.


Fear of no shower and evidently stressing over not getting to go to D.P. was bothering him. I used the phone and called the office. A message was waiting for me. It seems that although the shower gal called, our phone never rang. She was on her way though.


I explained to Al that she was coming but by then he was too much into the stress part and he wasn’t truly listening to me. It seems that this shower gal is coming later and later. She gives Al a very quick shower and he is still damp when he gets on the bus.


We all know what this can do to a healthy person, let alone an ill patient, especially as it gets colder outside. She finally arrived and was surprised that Al was getting a shower instead of a bed bath.


I explained to her that she should just always assume he will get a shower and when she calls to let us know she is on her way, I can tell her then if he is not going to D.P. She was cool with that.


She took Al to the bathroom. Now in the bathroom there is everything ready for her. I have already shaved Al and brushed his teeth. Towels, wash cloths, and his gait belt is all waiting and ready.


I came out to my computer and turned it on. I don’t remember what I was thinking I wanted to tell her but I popped my head in the bathroom to say something and my mouth dropped immediately.


Al was taking his three steps, and actually doing rather well considering the past four days, but, she was not holding on to him at all. I immediately with probably a stressed voice told her to hang on to him.


She said ok. I told her, ” I don’t ever want you to have Al in any standing position without hanging on to him. He could fall so quickly but if you are holding on to him at least you can let him slide down your leg and he would have less than a hard fall.” I had always learned this in my own 23 years of experience and training.


She just looked at me and said, ” I hear what you are saying, but he is a big guy. I will never hold on to him so tight that if he falls he will hurt me.”


I think I was speechless and then the sister part of me kicked in and I asked, ” Do you know anything about M.S.A.”? She rattled off the long name for it and explained she doesn’t get involved with the diagnosis, she just gives showers.


I took a deep breath so I could speak in a nice manner and I explained about the wires in his brain not working. I told her that although he is standing alone at this moment, the very next second he can buckle and go down. I also told her that I never wanted to see her not hanging on to him again and to use the gait belt for better control.


She came back with she wasn’t hurting her back over him. I left the bathroom fuming and confused. Under normal conditions I would have reported her butt to the office, but on the other hand, the staff seems to have a hard time getting employees to come up this far, so I feel trapped in some ways.


I want Al to have his shower, and yet I didn’t like her comment. I didn’t like that she wasn’t trained on M.S.A. and knew nothing about it. Maybe I am just too protective but Al has fallen even in my care and the bathroom is tiled, not carpet. Well, crap, I just don’t want him to fall period, and for her to say she was more concerned about her than him, just made me swallow wrong.


I am going to the grocery store and stocking up because now I never know if he will go to D.P. the next normal scheduled time or not. I want to enjoy my time out today. I haven’t left the house since last Thursday, so I had to write about my thoughts so I can at least enjoy the trip to the grocery store. Now that sounded pretty bad didn’t it. Terry is going to get all excited about grocery shopping. LOL

English: A funnel cloud just east of Salina, K...

25 thoughts on “Venting

  1. Enjoy getting yourself out for a bit and try to relax. She probably has health and safety rules to live by but in her position discretion and politeness should be standard – sadly it so often isn’t!


  2. its awful you have to go through this and made worse when so called persons in authority do not have the basic understanding needed to help you in your situation, my son is severely autistic and i could fill a book with the same encounters you have suffered here, lately its his school which is the worst and they are a special needs school who supposedly specialise in autism, sigh, you have a wonderful heart my friend to stay so strong and to carry on caring in the light of such little support, i will not pretend to know of MSA i don’t but i do know what it is like to be the primary caregiver and to be left with little or no support and for this i reach out to you i can offer little but support and understanding and friendship, a listening should you need it my email is on my gravatar please email me anytime especially if you need someone to just be there and listen, for now i offer virtual hugs and compassion and empathy i know how hard it is to count to ten and take a deep breath, you are a better person than me you manage to retain your composure when i would have flipped and i respect and admire you for that, the world may not appreciate what a fantastic job you are doing but i hope you know that in me you have one other person who knows and appreciates your life, stay strong, stay you , and be well my friend xx


    • You are amazing Kizzy. It can be difficult to take care of an autistic child and yet you do it basically alone. I am thinking you are very strong and I am also here if you need to vent or talk. Life is good, it isn’t always fun nor easy but it can be very rewarding. big hugs to you my friend


  3. We here are listening to you. I wish I could offer more than that for support. {{hugs}} enjoy the shopping and hopefully letting go of the things you have little control over when someone else is looking after Al.


  4. What a bitch!!!!

    I imagine she has a kind face. The kind you like to punch! Women like her don’t deserve to have a job like that.

    Now that you have vented, relax and go shoppiing


      • You are absolutely right. I did want to punch her face in, but she weighs in the hundreds of pounds so I didn’t want to be flattened like a pancake!!! LOL But I am pretty sure I am going to switch to a different Hospice area. I will know more tomorrow


  5. Good morning Terry, wow you had an interesting start to your day there – crappy shower girl! I would at least call and instead of telling them about it, ask them is this their policy or not, in other words does this group that sends out the shower girl impress upon them not to get hurt on the job? Low key, just asking for clarification from them 🙂 Also, as a side note, I would also explain to the shower girl that MSA patients sometimes cannot regulate their own body temperature, so Al should be dryed completely after his shower :))

    I am very happy that you have set this aside first thing in the morning and plan to have a great day. Am glad you are out and about today, breathing fresh air, having actual contact with other human beings out there 🙂 I hope that Al can keep going to day care for some time so that you can have this time, I know how much you need it.

    Have a good day, relax, and take your time.


    • Hi Carol!!!!! I had a good day associating with people who talked and smiled. Even if it was only the grocery store it was nice. I hope he can continue to go for his two days a week. He needs to socialize also for his own stability!!! Hugs my friend


  6. Whew I think I would call not so much to report in a tattle tale way, but to put them on notice that you are aware and is what she stated policy? My believe in my way of thinking and what I observed at the rehab center gait belts were used no matter how large a person. My daughter uses hers on very large football sized people, she is 5 foot one inch and appx weight of one forty, she seems to hold them up pretty well but when they go down she helps them go gently or catches them.I don’t know that I would want anyone to get hurt but if their training is proper and complete they should know how to help a patient. love and hugs (((xx)))


    • That is what I was thinking. Training and how to help lower them to the floor but to tell me pretty much she was more interested in her than him, didn’t sit well with me


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