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Thread: October chitchat

  1. #151
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    After reading everyone's comments I wonder when she said they did not send anyone for her, if maybe she was referring to the rehab place she is in rather than the Doctor's office. However she kept talking about no one being able to talk to the Doctor because he would not return the calls to them.

    She did mention that she didn't want to pay the co-pay for her transportation, so apparently a portion of it is paid by someone else.

    I appreciate all the comments because it will help me to know what to listen for and maybe how to respond when I talk to her again. I am not familiar with rehab facilities and from a personal standpoint I had rather not become familiar.

    It is a sad situation. Even though Andy has got to have hip replacement it seems that one of her children could be just a little more on top of this. I understand my brothers not taking over if it were me, because that it is a little different from children. However, if I was able to tell them the situation as Jeanie is, I certainly would be upset if they didn't try to help me. Maybe Jim's wife will try to do something next week. I will not call again for at least a week. I do not want Jeanie to feel that she has been forgotten by us, but I do not want her to think that I am in any way interfering.

    If anyone can come up with more information that might help when I do call, please speak up. By then she might have had the surgery, but I don't know.

    Edited to add: She says this place is still far better than the first one she was in. I was happy to hear that.
    Last edited by Virginia; 10-23-2020 at 10:24 AM. Reason: To add:
    Virginia

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  3. #152
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    Virginia, thank you for taking the time to tell us about Jeanie. So much suffering and lack of caring from key medical staff. Hoping she is turned a lot and on that special mattress to prevent bed sores.

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  5. #153
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    Virginia, probably none of us knows the dynamics of Jeanie's family, and there's no way we can speak up on her behalf there at the rehab place, or at least I don't know of one. For one thing, the HIPAA regulations would be an obstacle.

    This is just my opinion but it looks to me as if all we can do is keep letting her know we're still here for her and keep on the lookout for news of her. I have an impression that just realizing that we're thinking of her helps to cheer her up, but maybe that's just wishful thinking.

    (My Internet service provider has had a problem all day and I haven't been able to be online much but just now I'm here. Don't know how long this connectivity will last though.)
    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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  7. #154
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    Just another P.S. Rehab facilities usually have social workers who can sort out all types of things. Pastors, also.

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  9. #155
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you for calling Jeanie and updating us on her situation. I'm grateful that this rehab is better than the other one, and it appears to be a nice facility with a lovely campus.

    It's a bit confusing as to why her doctor won't answer anyone's calls. The longer Jeanie goes without having the surgery to remove and replace the pins, the possibility of complications increases.

    Her rehab does have a social worker, and that is where I would begin to sort out her situation. The social worker can tell her how long she can remain in the facility, and what the costs are for staying longer. The social worker should be able to sort out the doctor, the transportation, as well as the care Jeanie will need when she returns home.

    Jeanie should also have a case manager, to whom she could turn for help. Between the case manager and the social worker these issues could be resolved.

    With COVID, it's likely that face-to-face meetings between family or advocates with rehab staff are not permitted. Telephone contact may be the only alternative, unless virtual meetings are allowed. Andy having hip replacement surgery doesn't prohibit him from using his phone. Jim could take a few minutes out of his day to call, and I would imagine so could his wife. If each one of them called and expressed the same concerns, something might change for Jeanie.

    There is always the fear of making waves, which then jeopardizes the care of your loved one. I am a pro at that balancing act, and I've alienated a few professionals on the way. But, I have the advantage of 50 years of experience, and when I advocate, I have all of my ducks in a row. Most people don't have someone like me to fight for them. Many people just accept whatever doctors and nurses do as okay, because they are doctors and nurses.

    Unfortunately, vulnerable patients are often not acknowledged, when they complain. Or they don't want to complain, because they fear reprisal. That's why we all need someone, who will ask questions, follow our health care journey, and make sure that everything that can be done is done.

    Why isn't Jeanie getting out of bed into her wheelchair? Doesn't the rehab have an electric lift, like a Hoyer or Liko? If that's not a law for these facilities, it should be.

    I worry also that being in bed constantly will cause skin breakdown. While the rehab offers wound care, we don't want Jeanie to need it, and she will, unless she has an alternating pressure, low air loss mattress. We have the best of the best for Jon and Jim, and they still had wounds on their backsides. It happens quickly too.

    What about Jeanie's need for a change of scenery, from being stuck in her room day and night? The campus, as I said, appears to be lovely, and she should be able to go out in a wheelchair every day to enjoy being pushed around in the chair to see all of it, get fresh air, smell flowers.

    A holistic approach to healing. When Jim was hospitalized, aides would take him for walks in the Japanese garden beneath his window. He loved these walks and said they gave him peace and calmed him.

    We aren't a room or a bed number. We are human beings. Care is all encompassing, when it is provided properly.

    I wish that I had the authority to step in to advocate for Jeanie. And for every other person in this rehab, who is also not receiving full care. And every other rehab around the globe. It breaks my heart to know that in our most vulnerable and desperate moments, we can be abandoned in a rehab or long term care facility, with our rights and dignity stripped from us and subpar care.

    My 92 year old grandmother was in a 5 star long term care/rehab facility, after battling pneumonia. She had a feeding tube placed. She was miserable. The last time I saw her, she told me that she was cold. I searched the facility for someone to tell me where the blankets were located, as there we none in her room. A young man snapped at me, "She already has 2 blankets on her."

    "She's cold! If she needs 3 blankets or 12 blankets, bring her the blankets! That is your job. And she deserves your respect." He brought in 6 blankets, and I thanked him and covered my sweet grandma with two of them.

    No one should ever be treated this way. It's shameful that we still are in 2020.

    Prayers for Jeanie and everyone and your loved ones ~

    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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  11. #156
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    Rose, it was my understanding that it was Jeanie who did not want to get in the wheelchair anymore. Maybe she will again soon. I think she had a scare and that was kind of it. I have found Jeanie to be pretty outspoken when she needs to be and someone who can take up for themselves. When talking to her when she had the last surgery, and now this one, she is not nearly as meek as she sometimes is on here. I don't mean she is not nice. Obviously she is very nice, but she does speak up for her needs, especially when she gets frustrated.


    Hope you are doing well. I was wondering where you were when I was own earlier.
    Last edited by Virginia; 10-23-2020 at 07:22 PM.
    Virginia

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  13. #157
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you for calling Jeanie and updating us on her situation. I'm grateful that this rehab is better than the other one, and it appears to be a nice facility with a lovely campus.

    It's a bit confusing as to why her doctor won't answer anyone's calls. The longer Jeanie goes without having the surgery to remove and replace the pins, the possibility of complications increases.

    Her rehab does have a social worker, and that is where I would begin to sort out her situation. The social worker can tell her how long she can remain in the facility, and what the costs are for staying longer. The social worker should be able to sort out the doctor, the transportation, as well as the care Jeanie will need when she returns home.

    Jeanie should also have a case manager, to whom she could turn for help. Between the case manager and the social worker these issues could be resolved.

    With COVID, it's likely that face-to-face meetings between family or advocates with rehab staff are not permitted. Telephone contact may be the only alternative, unless virtual meetings are allowed. Andy having hip replacement surgery doesn't prohibit him from using his phone. Jim could take a few minutes out of his day to call, and I would imagine so could his wife. If each one of them called and expressed the same concerns, something might change for Jeanie.

    There is always the fear of making waves, which then jeopardizes the care of your loved one. I am a pro at that balancing act, and I've alienated a few professionals on the way. But, I have the advantage of 50 years of experience, and when I advocate, I have all of my ducks in a row. Most people don't have someone like me to fight for them. Many people just accept whatever doctors and nurses do as okay, because they are doctors and nurses.

    Unfortunately, vulnerable patients are often not acknowledged, when they complain. Or they don't want to complain, because they fear reprisal. That's why we all need someone, who will ask questions, follow our health care journey, and make sure that everything that can be done is done.

    Why isn't Jeanie getting out of bed into her wheelchair? Doesn't the rehab have an electric lift, like a Hoyer or Liko? If that's not a law for these facilities, it should be.

    I worry also that being in bed constantly will cause skin breakdown. While the rehab offers wound care, we don't want Jeanie to need it, and she will, unless she has an alternating pressure, low air loss mattress. We have the best of the best for Jon and Jim, and they still had wounds on their backsides. It happens quickly too.

    What about Jeanie's need for a change of scenery, from being stuck in her room day and night? The campus, as I said, appears to be lovely, and she should be able to go out in a wheelchair every day to enjoy being pushed around in the chair to see all of it, get fresh air, smell flowers.

    A holistic approach to healing. When Jim was hospitalized, aides would take him for walks in the Japanese garden beneath his window. He loved these walks and said they gave him peace and calmed him.

    We aren't a room or a bed number. We are human beings. Care is all encompassing, when it is provided properly.

    I wish that I had the authority to step in to advocate for Jeanie. And for every other person in this rehab, who is also not receiving full care. And every other rehab around the globe. It breaks my heart to know that in our most vulnerable and desperate moments, we can be abandoned in a rehab or long term care facility, with our rights and dignity stripped from us and subpar care.

    My 92 year old grandmother was in a 5 star long term care/rehab facility, after battling pneumonia. She had a feeding tube placed. She was miserable. The last time I saw her, she told me that she was cold. I searched the facility for someone to tell me where the blankets were located, as there we none in her room. A young man snapped at me, "She already has 2 blankets on her."

    "She's cold! If she needs 3 blankets or 12 blankets, bring her the blankets! That is your job. And she deserves your respect." He brought in 6 blankets, and I thanked him and covered my sweet grandma with two of them.

    No one should ever be treated this way. It's shameful that we still are in 2020.

    Prayers for Jeanie and everyone and your loved ones ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    When my MIL was in a skilled nursing facility after a car accident, and she was so cold, I got into bed with her and warmed her up. Blankets can only go just so far. Body warmth, or an electric blanket used judiciously can help.

    I also got everyone a flu shot in that facility, as no one had had one, and it wasnt on the admin’s radar.

    And, one of the 4 roommates started to crash after her daughter briefly left to get something at a store. She asked me to watch her mom. I called the CNA who said, she is fine. I said, “She is not fine, she looks like she had a cardiac incident
    She called the doc who sent her to the hospital.

    A week later one of the roommates was being discharged and came up to me and said, “Just when you lose faith in humanity , someone like you comes along”.

    I think that most of us here are like that person, “Someone like you comes along”...

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  15. #158
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Perhaps Jeanie had a problem with transferring to/from the bed and chair. This may be an issue for her, because her leg doesn't have pins, which could be a remedy, after she has surgery. In the meantime, she would be safe to be transferred by experienced staff using an electric lift with a sling.

    We have a Liko lift for Jon, which worked perfectly to lift him out of bed and into his chair or recliner.

    I hope that Jeanie is still receiving PT. If so, this is something her therapist could teach to staff, so that Jeanie can get out of bed safely. I truly believe that she might feel better emotionally and spiritually, if she could go outside at least once a day.

    Thank you for thinking of me. I've had some challenging days. I'll post about it in Child Neurology.

    Prayers that your back feels better soon.

    Sunshine2 ~

    How wonderful that "someone like you" came along to help all of those folks. But, isn't it a shame that someone like you, or any of us, has to intervene, when medical staff fail? I'm sure we're always placed in that situation for many reasons, that being one of them. But, if these facilities were more regulated and audited, the staff might become "someone like you."

    Your mother must have felt so comforted by your warmth. You are so right that body warmth is the best, when possible.

    With my grandma, it wasn't possible. It took me an hour's drive to get to her and another hour's drive to pick up my sons at their schools. My time with her was so brief. And, she was quite fragile, in pain, as she was dying. It might have been painful for her to be held close to me. I knew that the blankets wouldn't warm her enough, but at least she had as many as she wanted, when I left her. She passed the next day.

    The same was true for Jim. At the end, the slightest touch caused him unbearable pain.

    Sending prayers for you as you battle these pulmonary issues. Are you getting any relief at all from the nebulizer treatments?

    More prayers for everyone here and your loved ones. Be safe and take super good care of yourselves.

    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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  17. #159
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    Rose, I did not ask how they were getting Jeanie up, but I know that they were. It took two of them to get her in the wheelchair. She got scared at one point and didn't want to get up anymore. When I talk to her again I will find out if she has changed her mind and if they have taken her outside? I will tell her you want to know.
    Virginia

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  19. #160
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    Is everyone just going to hibernate all day?? What and how are all of you doing?
    Virginia

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