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Thread: What Is Next For Jonathan?

  1. #131
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    ((((((agate)))))) ~

    Thank you for your concern.

    Jon has all of the resource benefits available. He might be eligible for respite care, but those hours would be deducted from my hours as his caregiver. I would lose income. We have quite a few expensive items on our agenda: a new mattress for Jon, which turns him side to side; a back up generator; very necessary home repairs. We can't afford to lose income.

    I would have to train the Respite Care worker. Our home is small and cluttered with equipment and beds. We don't have room for anyone to just camp out. Our past experiences with Respite Care workers were extremely poor. Abuse and neglect.

    As I mentioned, no one can help me with The System, the biggest source of my stress these days. And no one can coordinate all of Jon's services and supplies.

    Of course, if I keel over, someone will have to take over all of my responsibilities. Jim's not up to that task. This is why I need to get a Special Needs Trust in place for Jon, so I can begin to build the structure for Jon's care in my absence. Jon will require Private Nursing with RNs, if Jim and I pass before him, or if I pass before Jim or become incapacitated. That means, our estate would pay for his care. Another reason why I can't hire anyone now, while I'm here and still functioning. We need the income to protect Jon's future.

    Our situation is rather unusual. Most people, who have the level of disabilities and medical issues similar to Jon's, do not survive to be 48. And most parents of a child his age either don't survive or are unable to care for their children.

    Typically, many parents of children with special needs divorce ~ the rate is quite high in this demographic. Not many single moms remarry. I was fortunate.

    My dillemma is where to begin and how to manage all of the things that need to be done. I'm a very organized person, but it's hard to organize, when everything is a priority.

    Yesterday, Jim reassured me, as he often does, "You'll figure it out, honey. You always do."

    Just have to solve one problem at a time, even when there are dozens of problems staring me down. Make a list and cross things off, when they are done.

    Right now, I'd be euphoric, if we had new toilets!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  3. #132
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    Thumbs up Ihhs approved!

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

    We received the IHSS Notice of Action today. Jon's maximum monthly hours, including Protective Supervision, have been approved!

    The case worker did exactly what I predicted he would do: he rearranged hours in different task areas. Take an hour out here, put an hour in there. In doing so, it appears that changes have been made. In fact, the NOA states that Jon's hours have increased. How can his hours increase, when he has the maximum?

    This is just further proof that IHSS is not designed to meet the needs of an individual, with multiple medical and physical needs requiring 24 hour care.

    I doubt that enough time has elapsed for the doctor's recommendation for PS to reach the case worker. It will simply be official documentation in case there is an audit. That's the same reason the hours get jostled about every year.

    Jim patted me on the shoulder and smiled, "See, honey? I told you that you'd figure it out!"

    Yes, I did, but the problem is being placed on the edge every year during this review and waiting for the NOA. This is how I've spent my entire adult life: anticipating that something is going to be taken away from my children, donning my armor and preparing my defense.

    My successes in the past, in the 1988 IHSS hearing, or even last year, do not give me a comfort zone and confidence that all is always well. You could fill a Costco warehouse with all of the begging letters I've written in 48 years.

    This NOA doesn't feel like success. It feels like we dodged a bullet. I don't have to file for a Fair Hearing. And next year, we'll go through this baloney all over again.

    The System doesn't recognize me as an elderly woman, a grieving Mother, a caretaker to severely ill loved ones, a son and a husband. It doesn't care how tired I am, how little sleep I get, how stressful life is, how much I hurt inside and throughout my body.

    I am merely Provider # ......... for my son, Recipient # ..........

    And our case worker has 400 other cases just like ours.

    Next ...

    Now that that's behind us, I can move forward with the other things crowding my long list.

    Thank you all for supporting me, and allowing me to vent here. It is good therapy, as I've said many times.

    Doing the Dance of Joy in my mind ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  5. #133
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    Well done, Rose! I am surprised you have a response so soon. I’m glad that you don’t have that worry hanging over your head. Sleep well tonight.

    ANN
    There comes a time when silence is betrayal.- MLK

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  7. #134

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    Happy to hear that Jon’s were approved. It’s such a relief for you to be over for the year.

    The system is incredibly broken and you’re expected to do more with less and with substandard medical supplies because the lowest bid won the contract. Unfortunately, I don’t see it getting any easier.

    Pull up a chair and have a ��!!

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  9. #135
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    ((((((Marcie)))))) ~

    The System has been incredibly broken all of my life! It hasn't gotten any better. It's 30 years after our IHSS hearing, and I'm still having to prove that Jon needs PS! That's not progress!

    I vividly recall a meeting in the 1990s at Regional Center, as parents listened to potential budget cuts to their children's educational, medical, and social programs. Sitting behind me were two very young parents, with a 3 year old daughter, who had special needs and medical issues. The young Mom was sobbing as her husband held her.

    I turned around to them, and I was crying too. I told them that I had tried for over 20 years to fight so that they wouldn't have to go through this. I apologized for failing them. The mom wept, "Is it always going to be like this?"

    All I could say to her was, "I hope not. But you will have to fight. We all will."

    In 1992, a well known CBS local reporter was in our home, as we were battling cutbacks to IHSS. Somewhere we have a VHS tape of the part shown on air. Jon is in our stair chair, and I am controlling the decline and bracing him. The reporter asked me whether I believed that this protest would change anything.

    I responded, "I've been fighting the System for 23 years. Nothing has changed. And unless we receive support from others, who aren't in our shoes, it never will."

    When the Regional Center Ex. Director said to me, "You're a pioneer!", I laughed.

    "No. A pioneer institutes changes. Nothing changes. I haven't pioneered anything, or I wouldn't be asking you for help to iron out problems."

    Every one of us is a pioneer. We have to stand up for our civil and human rights. We have to fight an unfair System, which is completely oblivious to the needs of those people, who need assistance. We have to eradicate the stigma around people with developmental disabilities, and every other kind of disabling condition. That stigma permeates every aspect of our lives, because persons with disabilities are devalued. They are perceived as a "drain on the economy" using "taxpayer dollars."

    So you, every CN parent, and all parents of children with a disabling condition have to fight. And, maybe someday, probably not in my lifetime, future parents will be spared the battle.

    I pray this will be so.

    And I send healing prayers always to you, your husband, children and family.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  11. #136
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    ((((((ANN)))))) ~

    I'm sorry ~ I missed your post! I am also surprised how quickly the NOA arrived.

    Because it's always something, Jon had a seizure last night. This evening, we increased his meds doses to see if we can fend them off. Jon was trying to fall asleep, which is the typical timing of his seizures.

    How unfair is that? You're trying to relax and go to sleep, have a restorative snooze, but first you have to have a seizure.

    This morning, Jim suctioned Jon, as his SATS were 89/90. His heart was elevated at 104, so we knew he was brewing a temp. Sure enough, 100.6. I bathed him, and he's naked as a jaybird now.

    Urine output is excellent, but his bowels are lagging. Every time I pull out the MOM, he starts producing, before I give it to him! I'm hoping that will be the case tonight.

    Just another day ... thankfully, the weather is cooling a bit.

    Enjoy the Cape, ANN! Wish I could be there with you!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  13. #137
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    Wouldn’t it be fun, Rose!

    And Peter would cook.

    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #138
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    Cool

    ((((((ANN)))))) ~

    Yes! Yes! It would be so much fun! And Peter, a vegetarian, cooking? BLISS!!! And, I'll bring the Zinfandel!

    Now, let's see, how do I tell Jim and Jon that I'm taking a vacation in Cape Cod for a few days? Hmmmmm ...

    Well, that was easy. I told Jim that I was going to join you and Peter in Cape Cod, and he said, "That's great, honey! I'll help you pack!"

    Hmmmm ... in fact, that was TOO easy!

    Increased meds seem to be working so far. Jon did a lot of flailing last night. He pulled off his colostomy flange. It took him about 1 1/2 hours to fall asleep. I feel so badly for him, and so helpless.

    John has had a couple of very long and tiring days, so we cancelled his visit yesterday. Jim turned Jon so I could bathe his back, change his under pad, and treat his wounds. It went well. I'm so grateful that Jim is so much stronger now. He still has RA pain in his hands and knees, and he's trying not to take more Prednisone than needed. He feels better, so he's doing more, and he's paying for it later with RA pain.

    The Quest for New Toilets began today!

    Jim and I spent time on the computer looking at toilets (romance at its finest!), and we finally decided on the one that meets all of my criteria. Universal/Comfort height, sleek base (no pipes showing). This matters to me, because cleaning our toilets really does a number on my back. Dual Flush, low noise, a special coating to prevent bacteria.

    Jim said, "We've had cheap toilets for 20 years, because we were waiting to remodel our bathrooms to get better toilets. These will be the last toilets we buy. Let's get what you want." I hemmed and hawed a little, and Jim handed me the phone. "Call the plumber now."

    So, I did, and we're waiting for them to call us back with information about them acquiring the toilets and installing them.

    We have a new hot water heater, and we're going to have great new toilets. And I'm really excited about this!

    I will miss not joining you and Peter at the Cape. But, I'm waiting for toilets. That's almost as good ... ?

    ENJOY! ENJOY! LAUGH! EAT! LOVE!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  17. #139
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    We are so upset that you are not coming, Rose, that we are going back home tomorrow. Apparently we are going fromhot and humid to hot and humid only at home, the ocean to jump in is not so close.

    I am sorry Jon had a difficult evening. I think about him a lot.

    ANN
    There comes a time when silence is betrayal.- MLK

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  19. #140
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    ((((((Hugs to All))))) ~

    Jon's wounds are gushing like geysers!

    I finally realized today that is why his testicles are not healing. The wound is an open abrasion, and the water in his system is escaping through the skin. Just like the scratch on his left thigh, which is minor but is pouring fluid out by the bucket. Don't ask me why it took me so long to figure this out. Sometimes, when I'm looking for a complicated explanation, the obvious escapes me.

    Jim and I had to turn Jon today, because his sheets, pad, and mattress were sopping wet. It was challenging, but it went well, as Jon cooperated.

    Now, we'll see how Jim feels later on, like tomorrow. I hope it doesn't set off another RA flare.

    It's pretty clear that we're going to have to do this everyday now. I don't know how we're going to manage it. John only visits twice a week, and we can't ask him for more time. The agency doesn't have any aides capable of turning Jon.

    The water is escaping, which is good, but its method of escape is not good. I can't imagine any other way to manage the leaking than what we're doing. I apply Optifoam and replace it,when it's saturated. Clean with Microklenz and apply betadine or in the case of his testicles, Butt Paste. We need wound care nurses. My next request ...

    How's your Labor Day Weekend? I hope everyone is relaxing and enjoying the end of Summer.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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