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Thread: Stress Week

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Angry Stress Week

    ((((((Hugs to All)))))) ~

    Last Friday, Jon's nurse changed his catheter. A trace of blood, but nothing more.

    Until Sunday, in the wee hours of the morning, when Jon bled profusely for an hour. Followed by clear pee and periodic blood clots in his urine. He developed a fever, which escalated to 102 by evening. Typically, his unexplained fevers resolve to normal by bedtime, with half hourly bed baths and being stripped naked. Not so this time. He was feverish all day on Monday. After I gave him some MOM, and he began to produce through his colostomy, Jon's temp started to resolve, and his sloshy belly began to deflate.

    I had to advocate through Jon's nurse to get a PT here to evaluate Jon. Finally, we were allowed to have a PT, after the agency's PT director had dismissed Jon as not needing a consult, because he's "bed bound," and "there's nothing we can do for him." But the PT wanted to visit at 3 p.m., which is too late for Jim. He is losing sleep every day and evening and the later he goes to bed, the less sleep he gets. So, another PT will be assigned and scheduled for an earlier appointment between 11:00 and 1:00. Turns out this PT specializes in Fluid Management, which is exactly what we need.

    Yesterday, a union rep knocked on our door, as she has done every week, sometimes twice a week for 4 months, trying to persuade (coerce) me into joining the union, which represents IHSS care providers. The union gets my dues, despite that I am not a member. It's called "fair share" fees for non members, because we "benefit" from all of the lobbying they do on our behalf.

    All of their lobbying on our behalf?

    Hmmm ...

    Because I am Jon's mother, Social Security and Medicare are not taken from my check. If he was a stranger, I would have that benefit. This affects how much income I will receive when I "retire," and it is blatantly discriminatory. Union hasn't fixed that.

    The State cut 8% last year and 7% this year in hours for IHSS care. Jon lost 20 hrs/month for care, and I lost 20 hours/month in wages. How did the union help us there?

    I work over 40 hours/week. I should be paid overtime. I'm not. How did the union help me there?

    They haven't done a damned thing for me or Jon, with the money they rob out of my paycheck.

    We have a sign on our front door, with a picture of Laurel & Hardy motioning: "Shhh..."


    On it, in big bold print is: Please Do Not Knock. Residents Are Sleeping. Thank You."

    And yet this union rep KNOCKS on our door every single time she shows up. She wakes up Jim. Every single time.

    I know who she is and why she is here, and I do not answer the door. She loiters awhile, then leaves a propaganda door hanger on our door knob.

    Well, she came back today, and Jim answered the door. He told her, "My wife doesn't want to join the union. You need to stop coming here." She went into her spiel, "I didn't know that," and "She doesn't understand how much the union can help her."

    I heard that and I lost it, and I screamed at her, "Can you read? Look at the sign on our door! You wake up my husband every time you come here! I'm not joining the union. EVER! Now GO! GO!"

    And she still tried to persuade Jim that I don't understand.

    What do you think, dear friends? Do you think I don't understand?

    Here's what I understand: I have a right to not join the union. I also have a right to not be harassed, which she has been doing for over 4 months now.

    My phone calls to the union 2 months ago, to tell them to leave me alone, were annoying. "Why don't you want to join? Do you know all that we do for you?" And when I called our local union office: no answer.

    Yesterday I sent an email to our state advocates for disabilities and persons with DD, and Jon's county case manager, begging them for advice on how to stop this harassment. I never planned on opening the door, but Jim thought he could deactivate this stalker with saying "No."

    If she or any union member ever shows up at our home again, I'll call the police and have her/him arrested for trespassing.

    Jon (and Michael) have been IHSS recipients since 1986, and in 1988, I represented them in a Fair Hearing. I know every IHSS rule and regulation, and I fought long and hard to save the IHSS program in our state and county. No one from the union can tell me anything new or meaningful. And as long as I and the other 2/3rds of IHSS careproviders, who are related to our IHSS recipients, are victims of capricious discrimination, the union does not represent us.

    And, it angers me that they don't respect our boundaries. That she knocks on the door, with the sign begging her not to knock. And she should know why we have that sign, since an IHSS beneficiary lives here.

    Just to top off the week's adventures, Jon surprised us today, when we turned him to change his under pad and clean him up. He had a bowel movement. Not from his colostomy. From his rear end. In the 9 years since his colostomy was placed, this has never happened.

    My Google research efforts failed to help me figure out why this happened. I emailed Jon's nurse, with the hope that she can give me some information, and tomorrow, I'll call Jon's doctor. It's just weird, and it panicked me, because, well ... I'm pretty close to TILT on the Stress-O-Meter. And after 9 years, it is shocking to see bowels emanating from Jon's rear end.

    I need to be here:



    with one of these in my hand:



    if only for an hour!

    JOIN ME!!!

    Love & Light,

    Rose


    PS: If there is an attachment photo of a dog with Santa Claus in my post, I have no idea how it got there! Just another weird thing happening in my world, I guess! At least it is a cute photo!
    Attached Images Attached Images
    Last edited by Earth Mother 2 Angels; 08-21-2014 at 08:05 PM.
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    So far, Jon has not produced any more bowel from his rectum, but he also hasn't produced any through his colostomy. So, do I give him MOM and risk the leakage again? I just don't know what to do, and his nurse hasn't replied to me yet. I didn't call the doctor today, because it's Friday. Never call on Monday or Friday. A lesson I've learned.

    Jon's vitals are all good, and he's peeing like a race horse, so he seems to be fine.

    I have to remind myself that Jon produced two 4x4 gauze pads and 6 inches of surgical tape from his colostomy a few years ago. So anything is possible with Jon. That phenomena has boggled the minds of numerous doctors and nurses. "I've never heard of anything like that!" most of them have exclaimed to me.

    After all of yesterday's excitement, Jim and I ordered delivered Indian take out, and we enjoyed a vegetarian Indian meal together. It's a big deal to us, because usually, I eat dinner, while Jim sleeps, and Jim eats dinner, while I sleep. It's serendipitous that we are awake at the same time to eat dinner together. Lentil soup is comfort food to me, and that helped calm me last night.

    As Jim and I were discussing the union today, he revealed to me that he had said to the union rep yesterday, "Someone from your union was here yesterday." And she responded, "I didn't know that," as she seemed to be looking through a chart on a clipboard.

    She lied. She was the person, who showed up on Thursday. I saw her through our front door peephole, and through our living room shutters, and I saw her car. Same woman.

    I wonder how many holdouts there are to union membership. They seem to be pursuing me with so much fervor, and I'm only one person, so why is my membership so important? They have my money, taken from my wages monthly. Why do they need me to carry their card?

    Based upon the annual union dues deducted from my biweekly paychecks and the number of IHSS care providers in our state, this union receives $150 million in dues annually. Their flyer says that they prevented an 8% across the board cut to IHSS hours, which is a lie, because a 7% across the board cut was implemented by the state in July. Did they save us 1%? No. Did they halt the cuts altogether? Absolutely not. So what is that $150 million doing for my son and me, his paid care giver? Zilch.

    Perhaps I am overreacting. But I feel as though I'm being stalked. Like I am prey, and they won't stop stalking me until I cave in and sign a membership card.

    Every time I hear that knocking on our door, my heart skips a beat and I tense up, knowing that Jim is being awakened, and knowing who is waiting outside. Jim recalls a large, burly, bearded man appearing at our door years ago, a union rep who wanted to speak to me. Thankfully, Jim answered the door that time too, and he told the man in no uncertain terms that he was never to come back to our house.

    Threatened, intimidated, stalked, harassed, harangued ... these are the words I would use to describe the union's treatment of me since they took over our IHSS program.

    We are senior citizens taking care of our middle-aged son with severe disabilities, who is medically fragile. We shouldn't be exposed to this outside stress. It's just wrong on every level.

    And, while it seems I am venting (and I am), this is important information for all of you to tuck away in your memory bank for the future.

    This is how it works, my friends. This is politics.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  3. #3
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    Gosh what a unnecessary stress for you guys. Seems like a small request to just not show up at your door. I would imagine if it was a phone call you could stop it why not someone coming to your door. I don't like anyone coming to my door, these days no one wants to open their door to a stranger. I keep it locked and tell them to leave whatever they want in the mailbox I will not open the door to anyone I don't personally know.

    I hope Jon is doing better today keep us posted. Sounds so scary...
    Mary Grace

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    ((((((Mary Grace)))))) ~

    Thank you for your good thoughts and positive energy.

    The union phone calls and visits to our home began in May, before the state budget was passed. It has been incessant. They are relentless, and they apparently desperately need me to carry a union membership card. They cannot comprehend my resistance, probably. Most IHSS caregivers are unfamiliar with the history of the program, unable to advocate on their own, believe the line being fed to them by union reps, and are intimidated by authority. That isn't me.

    And while asking them to stop coming to our home seems like a small request, they are all about putting the pressure on potential members and hold outs. This is unequivocally political in motive and agenda. They want to inflate their rolls so that they can tout how many members are behind them. The problem is, as I said in my first post, they aren't doing anything to help Jon or me. I should be having Social Security and Medicare taken out of my paychecks. I don't, because I'm Jon's mother. How is that equitable or fair? It is not! When I retire (which will be after Jon passes), I will have far less to live on than if I'd received those benefits from my paycheck since 1986, when we first entered the IHSS program.

    We didn't need a union. We have a well organized assemblage of advocacy organizations, who are the actual force to change laws or stop the passage of budget cuts to the IHSS program. The union has done nothing. $150 million a year from IHSS careproviders. Taken without our consent or agreement, or through intimidation and lack of knowledge. That is just all kinds of wrong.

    As to answering the door ~ I just don't have time to answer the door to people selling their religion, or cookies, or magazines, or to Realtors, who want to know if I am planning to sell my house, or to delivery people with Jon's supplies, when we have a protected porch on which to leave the boxes, or to companies wanting to paint our house, trim our eucalyptus tree, or build us a fence.

    Hence the sign on our door.

    That sign has successfully deterred those individuals from knocking. We open our front door to a pile of business cards and door hangers. But, the union reps knock. They knock hard, loud, and long. And that is harassment.

    I gave Jon MOM, 1 Tbsp yesterday, and he's produced a nugget through his colostomy and nothing from his back end, so we're good thus far. Instead of waiting for the PT to call, I'll call the agency tomorrow to find out what day he's scheduled to visit. I am anxious to hear what he has to say.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 08-24-2014 at 07:05 PM.
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Distinguished Community Member andromeda31's Avatar
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    ((((Rose))))

    OMG, I would be pissed too about the repeat visits....they sound worse than the Jehovahs! I agree that what they are doing is harassing you. And who wants to have to get in an argument when answering the door? I know when I hear our doorbell ring I am always thinking "who the h*ll is it, *@#$" grumbling as I have to get up and get the door. Would the police have some advice on how to handle it? That sucks that they can take $$ for dues out of your check even if you are not a member. I never understood how that is ok. That was part of the big deal in my state with Act 10 when Walker made that not ok....I did agree with that part of it even though I don't agree with much else he has done. I saw there was an earthquake in Northern CA....praying you are not affected by that!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ...........
    Last edited by callyflower; 08-26-2014 at 03:28 PM.

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    ((((((Lisa)))))) ~

    We weren't affected by the Napa quake, as we're on the other end of California. But we have friends, who live in the vicinity; one had no damage, and I haven't heard from the other one. The day before the Napa quake, I had one of those moments, remembering our quake, and fearing another one. That happens to me and Jim periodically. It was that traumatic. So my thoughts and prayers are with the folks in Napa.

    I used to ask, "Who is it?" then told whoever it was, "Not interested." Then I put up the sign on our door, because Jim's sleep was being disturbed. It's just annoying to be interrupted by anyone, who has an agenda.

    I have thought about calling the police, or at least threatening to call the police if a union rep shows up again. My guess is that I would have to tell the union in writing that I do not want to join and ask them to stop coming to my house. I haven't saved all of the door hangers and business cards these past 4 months, so I have no evidence to prove harassment.

    The union claims that my dues are my fair share for the benefits I receive, which they claim they won for us. I have no sick leave, no paid vacation time, and I don't even have Social Security or Medicare taken from my paycheck. Per hour, I (like all IHSS providers) am paid less than a teenager, who flips burgers at In and Out. Last year, an across the board cut of 8% for hours of care; then restored, only to take 7% this fiscal year.

    Now, what did you do for me with those fair share dues you take out of my paycheck, union? El Zippo.

    $150 Million Annually in Union Dues, just from this one program, so who knows how much they get from other programs they represent.

    The Supreme Court recently ruled that fair share union dues are a civil rights violation in Illinois. Whether that will spill over into other states probably depends upon people like me, who might sue the union. Except, I am not people like me ... I don't have the time, energy, or strength to litigate anything. If I was 30 years younger ... yes, I would absolutely sue. I'd also file a discrimination law suit against the IHSS program for denying me SS and Medicare contributions.

    Thanks for being on our side, and being pissed on our behalf! I told Jim last week that I was losing my coping skills and on the edge, so something good needed to start happening soon. It did. I'll start a new thread to tell you all about it.

    Hope that all is well at your home. When does school start? Is everybody ready? What's the latest on wheelchairs, etc. How are Caitlin's seizures? Need an update from you, sweetie!

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 08-26-2014 at 05:52 PM.
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    ((((((callyflower)))))) ~

    I read your post before you deleted it, and I want to thank you for your excellent ideas and suggestions. I really appreciate your caring and offer of help in my time of stress.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad you were not in the quake zone! I have so much to update y'all, but won't get time until probably Thursday. This is the last week of summer for us, school starts Tuesday the 2nd. I am SO ready! We have open house tomorrow afternoon (at school, meet teachers, drop off supplies) and Brandon gets the palate expander out in the morning and also have to pick up Tyler's new glasses that are in. I have been overwhelmed with appointments this month! We did make a trip to the Milwaukee zoo with all the kids which was fun....but I will have to wait to write about all this since I really have to go label supplies and sharpen pencils (seriously this is required, and they don't come that way from the store!). I have been putting that off and of course now it is the night before. At least I have it all purchased and sorted into each kid's backpack. Plus I am waiting for Brian & the boys to get back from up north...as of 7pm they had not left yet so he is making me a little crabby since Brandon's appointment is at 8am tomorrow...off to sharpen pencils and relieve stress, lol!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Oh thank goodness you weren't in the Quake zone!!!!! And I am completely sympathetic about these awful union people harassing you - this is absolutely awful and should be stopped immediately - either by the police or a restraining order or.... there must a law! Rose, I am so happy for you that your PT very well may change your life and Jon's life!!! Perhaps it's unwise to be too hopeful, but what the heck - I'm hopeful. I do believe that his theory about the fluid sounds absolutely right and even if he manages to lessen Jon's 'filling up' episodes by half, that would be amazing! But I'm hoping the van. I send love and prayers, xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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