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Thread: News of Jeanie

  1. #1
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    Default News of Jeanie

    I decided I would start a new thread for this, so everyone would see it.

    I had a very upsetting conversation with Jeanie. She is exactly the way she was when I last talked to her. They still have not done the surgery she needs so that she can get the physical therapy on that leg that she needs to go home. I was shocked that absolutely nothing had been done. They cancelled the surgery again, for what reason I don't know. She is scheduled for Tuesday now. It was for Monday and they cancelled that and now it is Tuesday.

    No one has talked to the Doctor. I asked if her daughter-in-law could go to his office and just ask them what is going on. She seemed to not want to go there, so I didn't press it. She just keeps saying the Doctor will not return calls to any of them. She said she was going to talk to him Tuesday when she saw him.

    She doesn't go out of the room she is in. The physical therapy room is closed due to COVID. So, they come to her. She seldom even gets in a wheel chair anymore because she is afraid they will drop her getting her back in bed. I got the impression it was not in getting up, but in getting back in the bed that frightened her.

    They have put in for her to get Medicaid, but she gets $130.00 too much so she is not sure of that.

    I asked about a social worker or someone to act on her behalf that they might have there in the building. She has not talked to them since I talked to her the last time. She kind of feels like they are not interested in helping her at this point.

    It has crossed my mind that Jeanie's sons may be allowing her to be placed in a nursing home and no one has told her. They have not deserted her but I wonder if things at home got to be too much. Any thoughts on that? That was just something that crossed my mind.

    She asked me to post on here to everyone for her and I told her I would. It is a sad situation. Next time I talk to her I will ask again if she thinks she could use an Ipad. I would be willing to get one for her if she felt she would use it. Today the physical therapist came in and I immediately said goodbye to her and hung up, so there was no opportunity.

    She is trying to give up the pain medication she has been on since the shingles hit her. They were causing her bathroom problems. I asked if the shingles were gone. Still some scabs there, but no open ones. She still hurts around the left side of her stomach from the shingles. Giving up the pain pills may be one of the reasons she was so frustrated today. This is only the 2nd day, so she might be suffering the affects of coming off them.

    That is all I can think of right now.
    Virginia


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Virginia)))))) ~

    Thank you so much for updating us on Jeanie. This is sad news, indeed. I know that you are upset, and I wish I could reach out and hug you.

    It seems that Jeanie doesn't want to impose on anyone, like her sons or daughter-in-law, and she probably doesn't have the energy to pursue the social worker. Perhaps the social worker hasn't shown any interest in Jeanie in previous encounters? And here she is, having the imposition of being the squeaky wheel. There can be a risk, when patients become "demanding," in terms of quality of care. Or patients can become afraid that there will be a reduction in care, if they speak up.

    These surgery cancellations are malpractice, in my opinion. Perhaps COVID is an issue, and perhaps Jeanie's age and MS, etc. are precluding her from receiving immediate treatment to correct the errors in her first surgery. Jon had a rod and pins without any dislodging from 2005 to 2019. Of course, he was significantly younger, but he also had multiple health issues. Not all physicians graduated at the top of their class. Plenty of them just barely got by with a C+.

    Your observation about Jeanie's permanent placement in this facility is worth consideration. There could be many reasons why they don't want to tell her, thinking that it is better for her to think that she may someday break out of the facility and go home, than to give her the reality of her condition and that they aren't up to caring for her. She has a right to know what is going on, because this is her life and her body. And she should have a choice.

    If it's possible for her to have home care services, and she can safely live at home with 24 hour care, that should be the first option. But no one has offered that option to Jeanie. And she may think it is impossible. But there are many social programs (maybe not in Florida, but there should be with the large retirement population there), which might be able to help her. That requires an advocate, and Jeanie doesn't have one.

    I still have my van with two wheelchair tie downs and three captains' chairs. Imagine me driving across the country, picking up 5 of you along the way, and we all storm Jeanie's facility and demand to know what is going on! We'd sort it out, and Jeanie would have everything she needs. If we could, we would!

    Jeanie ~ You are in our prayers, and we love and miss you so much. I'm praying that you can wean from the pain medication successfully, that you get the surgery you need by a competent orthopedic surgeon, and that the care you are receiving improves. You should not be afraid to be lifted in and out of bed. They should have a lift to help them and you. Jon's fantastic lift just sits idle in his room, along with his full body sling. You would never fear transferring again, if you had his lift. I wish I could ship it to you.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  4. #3
    Distinguished Community Member agate's Avatar
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    Perhaps COVID is an issue, and perhaps Jeanie's age and MS, etc. are precluding her from receiving immediate treatment to correct the errors in her first surgery
    My thoughts exactly! Whenever people here in this building land in hospitals or rehab places or whatever lately (since COVID came along), my impression is that they're lucky if anything by way of care happens to them after they get there, and visitors are pretty much out of the question. So there they are, cut off from everyone they know and probably unable to wend their way through the maze of bureaucratic folderol in whatever system they're in just to find out what's going on with them and why so little is being done. COVID-19 has everyone flummoxed, and it's perfectly amazing that anything ever gets done now, IMO.

    But it is possible that some good doctors have carefully assessed Jeanie's situation and concluded that, what with COVID plus her age plus the MS, surgery isn't the way to go just yet, even though without it she's suffering.

    And they may be absolutely right. Surgery is increasingly risky for us, the older we get.

    As for 24-hour in-home care, I understand that that would typically cost $18,000/month. Most people just don't have resources that would stretch that far. Sometimes a person can do without an attendant at night, and that would cut down on the cost, or a family member can be on duty if a willing person can be found.

    Sad but I'm afraid it's the way things are. It would be nice if in-home care was provided as needed for anyone who needs it, I think, but I've often been told to dream on.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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

    agate ~

    Social services programs exist, such as In Home Supportive Services, which pays for about 9 hours of care per day for qualified recipients. Medicaid is one of the factors in qualification. Not all states offer IHSS, but many states offer some kind of assistance for home care. Florida is noted for misusing these services, unfortunately. This is where the facility's social worker should come into play.

    For people with developmental disabilities, like my sons, a law exists that they should live in the "least restrictive environment." That translates into "the community, not a facility."

    Jeanie's doctors proceeded with the initial surgery to place her rod and pins, but now they are unwilling to remove and replace the pins. It might be a concern over anesthesia so soon after her first surgery. But Jeanie deserves to be told the reason for these cancellations. That no one is telling her anything is unconscionable.

    Unfortunately, we don't know the specifics of the situation, so we are simply speculating. But, I do know that everything we need in this world, we have to fight someone to get it. I just wish that we could fight for Jeanie.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  8. #5
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    She did not mention COVID other than to say that the physical therapy dept is closed due to it. That doesn't mean that what y'all are saying is not spot on. It could be that the Doctors are afraid to take her into the hospital where she might pick it up and then take it back and spread it, without realizing it. In a facility like that it would be really hard to get it under control should it ever get started.

    I did forget to mention that Andy had his hip surgery and is doing well.

    Jeanie's surgery is not a real serious one (all surgery is in my opinion). It is day surgery and takes very little time. I think I told y'all I have found Jeanie to be very able to speak up for herself, not mean, but just not hesitant to say what she needs to say.

    If COVID is the holdup they should absolutely tell her.

    Rose, I could not get that kind of help here. Of course I am not on Medicaid. That may be one reason they are trying to get her on it so that she could get more help at home or maybe it could pay for her care there.

    I will probably find out a little more next week. Every time I call something is different or nothing has happened.

    By the way, Mark Meadows, Chief of Staff has tested positive for COVID. I don't know at this time how he is doing, or even if there are symptoms. I hope if Joe Biden and his family get to move in there that every thing is thrown out and replaced in their personal quarters.
    Virginia

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    Distinguished Community Member agate's Avatar
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    About Medicaid: Isn't there still an arrangement about "spend-downs," at least in some states? In WA state I often had to do a spend-down just to qualify for Medicaid because I had a little too much income.

    The Department of Social and Health Services would notify me how much I needed to spend down, and it could be over 3 months or 6 months. It was sometimes between $1,000 and $1,800 for 6 months if I remember right.

    This meant that during that 6 months, if I had to spend that amount for allowable medical expenses and sent in evidence (receipts), DSHS would put me back on Medicaid for the rest of that 6-month period.

    Naturally I was in a rush to spend that spend down fast so as to qualify faster but still there was often a 6-week wait a couple of times a year while I did the spend-down and waited for them to process the paperwork. But still I had Medicaid for about 9 months of the year.

    I think this is still being done? I've heard of it now and then anyway. Maybe the rules where Jeanie is will allow her to be on Medicaid under that kind of arrangement.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  12. #7
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    This makes me feel so sad for Jeanie. I have no answers, just please send her my love and care for her. It sounds like maybe she is being kept in the dark about the considerations re surgery?

    I am sure COVID fear has something to do with many aspects of her care. ....

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  14. #8
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    Yes, Sunshine she is being kept in the dark.

    Agate, I think that is what she meant by $138.00. I told her she should be able to get rid of that easily.
    Virginia

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

    agate ~

    Where is 24 hour in home care $18,000? Unless an RN is required, or a patient is on a ventilator at home with other significant health issues, I can't imagine it being that much. I was a paid caregiver for my boys for 33 years, and I certainly didn't earn that much! Of course, I was paid through social services agencies, but still that seems quite high to me.

    On the other hand, out of home care, such as Jeanie's rehab, could cost that much per month. They have a huge overhead and liability insurance bills. Typically, it is far less expensive to have care at home than in a facility. Jeanie could have aides to help her, with weekly home health nursing visits, and it would definitely be less costly than her rehab.

    For the last couple of years, John's mom lived in a residential home with 4 other elderly folks. They received home care, although it wasn't their home. John and his family visited her individually during the week, so that they could make sure her care was good. John knows what to look for after helping us with Jon and then Jim. His family definitely didn't pay $18k/month.

    However, even if it is $3,000/month, most people cannot afford that amount privately. This is why we need social services to step in to provide assistance. Unfortunately, as I said in a previous post, Florida isn't known for doing well in the social services department.

    A few years ago on Child Neuro, we were discussing Florida removing children with special needs from their homes and parents and putting them in facilities with Alzheimer's patients. This was a violation of state and federal laws, and the rights of the children and their parents.

    Virginia ~

    As I see it, Jeanie has no one advocating for her, and she's not advocating for herself. She is being met repeatedly with frustrating non-explanations for why she hasn't had surgery. No one is there to ask the rehab why she can't have a lift for proper lifting of her onto/off of the bed.

    That is her greatest fear of being dropped. That fear would vanish, is she had a proper lift with a proper sling. That is Jeanie's PT's field, and the PT should be getting this for her safety.

    If she has that fear in the rehab, then how would it be for her at home without help, or even with help? She won't have a lift there either.

    Yes, her surgery is simple, and it shouldn't take more than an hour, with qualified, skilled orthopedic surgeons. A) I'm not sure she has one of those, and B) I think Jeanie is on the back burner, because of her age, her MS, etc.

    Everyday around the World, physicians and medical professionals are making decisions about who they can save and who they can't save. If there is a shortage of ventilators for COVID patients, then they have to choose which patient will benefit the most from ventilation and is the most likely to survive. We've been told this has happened, but, as someone who has spent a lifetime in ERs and ICUs, I guarantee you, it is still happening.

    Perhaps Jeanie's doctors feel that other patients take precedence over her, because their success is more likely. Hip replacement, like Jeanie's son Andy had, seems very common these days. That's where the money is.

    At this time last year, Jim was having 15 radiation treatments. The total bill for those treatments was over $250,000, because I stopped adding up the ancillary charges. Thankfully, we were never billed for any of Jim's treatments, hospitalizations, tests, doctor visits, because we have a good Medicare/Supplemental plan. But they didn't pay $250k for Jim's treatments, of course. They overbill and hope to get what they can.

    It's all about the money in our health care system.

    One of the reasons why Jonathan, Michael, and Jim received excellent health care is because I was advocating for them. I stepped in, and I asked questions, and I researched, and I insisted on the best for them in every respect. I made sure they had the equipment and care they needed.

    Jeanie doesn't have an advocate to do this for her. And that is what is frustrating me right now. I'm not special, and I know many wonderful people, who advocated for their loved ones as I did. Everyone deserves to have someone on the front lines making sure that they are receiving the best care.

    Hey, the van is still in the driveway with a full tank of gas. I'm still thinking about us piling in and fighting for Jeanie. I wish we could.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  18. #10
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    Rose, just the other day I ran across that figure in a periodical. Unfortunately I can't locate the reference just now but I do recall being surprised by it and figuring out how it was arrived at. Then I realized that it isn't unrealistic.

    They were figuring a caregiver earning about $25/hour. A person needing 24-hour care might have 3 caregivers each working an 8-hour shift.

    That would be $25/hour x 24 hours/day = $600/day x 30 days in a month (not strictly accurate of course) = $18,000/month.

    Of course not everyone needs a caregiver 24 hours/day. And not every caregiver earns $25/hour. The ones I know here in this building are usually paid by the state (Medicaid) and I believe earn about $12/hour, or maybe by now they're getting the minimum wage ($15/hour). But these workers aren't as skilled as the caregivers some people might need, and those workers would earn more.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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