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    #76
    Just talked to Jeanie for about 35 to 40 minutes. She seemed in pretty good spirits considering everything that is going on. She got her hair cut and colored there at the rehab place. She wanted it a light brown and they told her they only had a reddish brown. She said when she got back to her room she looked and it was red. She laughed and said it looked better than when it was white. It had grown way down her back because it had been so long since it had been cut. Now it is about shoulder length.

    Her roommate, in my opinion, sounds a little worse than the first one. She talks to herself all the time and of course still leaves her TV on from morning till night. Jeanie says she is rude to the aids a lot. She has led quite a life. Her daughter died of an overdose at 42 and her son is in prison. She calls people and tells them to get her shoes and clothes to her. Then she tells them she has money and power. Jeanie says she has neither. She was taken to the hospital by her boyfriend and he kept her purse and she says he emptied her money with the ATM machine.

    To keep away from a lot of the above Jeanie is still reading. She says when she reads she can just be in another universe. I told her I was the same. Her daughter-in-law gets her paperback books at something like Goodwill and places like that for 50 cents to a dollar a piece. She brings her 5 at the time. She also brings her sodas and Mandarin oranges and whatever else she needs. Andy drops the Sunday paper off on Monday for her. They still leave things with the front desk and they take them to Jeanie.

    Her back is still like it was. Her daughter-in-law is going to send an e-mail to the Social worker and see if they can get a wound doctor in to take a look at it. She has decided to put in for a floating mattress and give it a try.

    Jeanie does say the place is kept clean, so that made me feel better. They mop everyday and clean all the furniture in there. I think they have bedside stands and dressers.

    She doesn't know what will be done with her house and says she doesn't care, because she will never see it again. She also said they could do what they wanted to with her van. Jim and Carla have been going through things in her house. I assume she meant cleaning it out.

    She asked about everyone and I told her she was missed and mentioned on here quite often.

    She told me that the last two weeks she has been getting menus and choosing what she wants to eat and that is to continue on. She likes that and I think that has made her feel better.

    Guess that is all I can think of right now.
    Last edited by Virginia; 04-23-2021, 01:27 PM.
    Virginia

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      #77
      ((((((Hugs to All)))))) ~

      Virginia ~

      Thank you for calling Jeanie and updating us.

      I'm glad that Jeanie had her hair cut and colored. I'm sure that lifted her spirits. It's also good news that she can order from a menu rather than take whatever is brought to her. And, I'm pleased that her sons and DIL are bringing her books and newspapers.

      Jeanie has had that wound for awhile now, and it should have been tended to immediately. The aides should have reported it to the RN supervisor, and a wound care nurse should have been called in for consultation. The longer a wound goes without proper treatment, the worse it gets. And, the worse it gets, the harder it is to treat. Unfortunately, I speak from years of experience with Jonathan's unmanageable wounds.

      Every bed-bound patient in a rehab should have an alternating pressure low air loss mattress. The longer rehab patients are left on subpar hospital bed mattresses, the greater the possibility for wounds to occur. Waiting until the wound appears to get an alternating pressure mattress is like closing the barn door after the horses have escaped. Too late.

      I can't help wondering whether Jeanie would still be in this rehab, if her initial injury had been treated immediately and correctly. As I recall, she had several delays because of transportation. And, as it turned out, she should and could have had an ambulance take her to/from surgery.

      I am saddened that Jeanie has accepted her fate of never seeing her home again and not caring what happens to it. Of course, that is better than longing to go home and being unable to do so.

      My heart just breaks for Jeanie, and I continue to wish that I could help her in some way.

      Thank you again, Virginia, with all that you have happening in your world, for taking time to connect with Jeanie and then connect us with her.

      Love & Light,



      Rose

      *Virtual Hugs Are Germ-Free!


      THANKS!


      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #78
        Yes, this is very sad--but it is good to know a few positive things about the place she's in. That it's clean and that she's getting a choice of food from menus--those are surely helping to keep her spirits up.

        I keep hoping she'll find a way to get back online and here with her online BrainTalk friends.

        Thank you, Virginia, for staying in touch with her and for letting us know what's going on. I have a feeling that your calls mean a great deal to her. It's all too easy to forget there's an outside world when a person is confined.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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          #79
          Rose, I reminded Jeanie today of what happened with Cat when she had a pressure wound. She says she doesn't know that that is what it is and thinks she will see a wound specialist when her DIL e-mails them about this. I thought she was suppose to have done this about two months ago, but I didn't say that to Jeanie.

          As far as the house is concerned, I think she has just turned herself off and is willing for her sons to do what they want to do. She said Any could live there, but he has two feral cats and he is better off in the rented apartment he has than he would be in her house as long as he has them. They came in to take her B/P while we were on the phone, so I think they do take care of some routine things. She said they came this morning to do another swab test for COVID. They do that periodically.
          Virginia

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            #80
            Why is my above post green? I will see if this one is.
            Virginia

            Comment


              #81
              I'm not seeing your post as green. Not sure why that happened. The only way I know of to make a post a different color is by choosing a color from the text color icon.
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

              Comment


                #82
                The green background on that one post went away.
                Virginia

                Comment


                  #83
                  ((((((Hugs to All)))))) ~

                  Virginia ~

                  I didn't seen a green background on your post. Hmm ... that is peculiar. I wonder whether Mike might know what would cause that to happen.

                  Jeanie is possibly hoping that she doesn't have a wound, because she knows what that can entail. I hope that she doesn't have a wound. However, my experience with Jonathan tells me that it is more than likely a pressure wound, because Jeanie is in bed all of the time. Even Jim developed a pressure wound requiring wound care and an alternating mattress.

                  A wound care nurse explained to me that the skin is our largest organ, and when the there is an infection or disease, the body consumes all of the nutrients. The skin is the last to receive nutrients, which results in skin breakdown.

                  It's unfortunate that her DIL hasn't acted on this sooner. She probably doesn't recognize the potential for a severe problem, especially if Jeanie is playing it down as "just a rash."

                  I maintain that the rehab staff should have been proactive in addressing Jeanie's wound. It shouldn't be up to the DIL to intervene.

                  Checking BP is probably standard procedure in all rehab/nursing facilities. Everything is scheduled, so there is a certain time of day for vitals. They should be checking her temperature, BP, respiration, and heart rate at least.

                  I agree with you that Jeanie has given up on her home, as she realizes that she is not going to leave rehab. She is powerless, and that is so sad.

                  My prayers continue for Jeanie.

                  Love & Light,



                  Rose

                  *Virtual Hugs Are Germ-Free!


                  THANKS!
                  Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                  Comment


                    #84
                    Thank you for keeping up our contact with Jeanie, Virginia.

                    There should be a right to peace and quiet - put the loud TV ladies together.

                    And how about fresh coffee when you want it with a biscuit and some cheese. And a bird feeder out your window and a private bath. I’m dreaming.

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

                    Comment


                      #85
                      Just had a good conversation with Jeanie. We talked for quite awhile and she is in such good spirits. She moved to a different room. This lady is nice and quite, not quite all there all the time, but does not yell or have the TV on loud or talk loud. Sometime she is quite lucid and they have a conversation. But Jeanie's spirits seem so much better. She was able to get another room with a window so her family can still come to the window.

                      There is a bad problem with her back. She does not have pressure sores, but she has a rash that now goes from quite low on her back all the way up to the top and then across her back close to the top. It is cracked in places and oozes. They took her to a dermatologist and it is a bacterial rash. The Doctor ordered Keflex, a special kind of wash and some antibiotic ointment. They are behind with the Keflex because it took them a few days to get it in. This is pretty miserable.

                      Jeanie does advocate for herself. She has learned that she has to because her family can not go in and see her, so like me, they are hearing what she is describing. A nurse was going to take her gown off and Jeanie told her not to touch her gown that she would take if off herself. She says when they do it it scratches across the rash and she can do it better. She is to return to the Doctor next Monday. I will call her later in the week to see what the Doctor has to say.

                      She has one sister left who lives in Tennessee. They have not seen each other in a long time. Her sister is 16 years younger than Jeanie and has two children by her first husband and her 2nd husband had two and then they had two together. So she has six children and a lot of grandchildren. Her husband shot and killed himself last week. He had been very depressed, cause unknown. The business was doing good and he had a lot of family. The funeral was a virtual funeral and Jeanie watched it on Jim's iPad. She says he was a man of Faith and that it really shocked her for that reason.

                      She was very glad to hear from me and talk to me. She asked about everyone and remembers everything I have told her from the last conversation. She really is mentally sharp. I think moving to this new room has really helped her a lot. She told me that she has always done a lot and that she is satisfied to sit and do nothing now. She laughs more than she was doing. (I don't know how with her back in the condition it is in.) I told her she was such an inspiration to all of us.

                      When I was telling her about everyone and how they were doing, she specifically asked about Howie and if he was still posting. I told her he had had some problems logging on to our new board and wasn't on as much, but that he does check in with us and let's us know what is going on with him and Sam.

                      She is interested in everyone on here. I told her that Parsi has checked in with us a few times and I told her about Parsi's problems but that she was doing much better now. I told her about DAR and what has been going on with her and Curt. She wanted to know if Sunshine had had her surgery and I told her what we know, but that we were all waiting to hear more. I told her about Linda having the MS hug and that John was getting frail and I didn't see how they worked the farmer's market in the heat. Of course she always ask about Agate and if she is alright. I told her Agate is almost as tough as she is. She just laughed. She wanted to know about Ann and I told her that Ann had a way of getting her husband to do all the work inside the house for her. (Another laugh) I also told her about Ann's trip to see her Mom, first in a long time. I told her that Ikoiko comes on and reads and does a little posting. Anyone I have left off here we probably still talked about on the phone. It is hard to remember.

                      She does want me to try to stay at home. She thinks I would not fair well in a place like hers. She thinks I am not quite tough enough. She was glad I am no longer going upstairs much.

                      I told her Rose is still with us, but was going to be very upset about her back. Rose, I honestly do think Jeanie is speaking up for herself now. I will probably know more about her back by the end of next week.

                      I told her that I would tell y'all "Our Jeanie is still a tough cookie".

                      Oh, on another matter. I actually lost Jeanie. When she moved to a different room they told me that yes she was a patient, but she wasn't there. I said well where is she and the lady said I don't know, you can contact her family. She might be in the hospital. I did not want to upset all of you on here until I knew something else, so naturally I sent a PM to Agate and told her I had lost Jeanie. Agate said "Oh my". She was trying to help me find her through Jim, but I decided to call again and be more assertive. Thought everyone might get a chuckle out of that. Jeanie did and said another friend had that happen to her when she moved.
                      Virginia

                      Comment


                        #86
                        Oh, on another matter. I actually lost Jeanie. When she moved to a different room they told me that yes she was a patient, but she wasn't there. I said well where is she and the lady said I don't know, you can contact her family. She might be in the hospital. I did not want to upset all of you on here until I knew something else, so naturally I sent a PM to Agate and told her I had lost Jeanie. Agate said "Oh my". She was trying to help me find her through Jim, but I decided to call again and be more assertive. Thought everyone might get a chuckle out of that. Jeanie did and said another friend had that happen to her when she moved.
                        Just a comment on this: I had actually tried to call her son and left a message. Virginia and I couldn't think of any way to find out where Jeanie was. Our next step was going to be to post about it here and see if anyone had any ideas. I'm really glad she was found.

                        But it sounds as if the back rash is giving her terrible discomfort.

                        I wonder if the Keflex is in capsule form? I took it years ago with disastrous results. It gave me a really terrible rash and very severe diarrhea. My medical record always states that I'm allergic to it now. I haven't had problems with any other drugs. Just Keflex (though I don't tolerate codeine well). I hope that Jeanie will do better with Keflex. Lots of people get good results with it, and it sounds as if her rash came along before the Keflex, which is meant to help it.

                        It's really good to know that she's been moved to a room with a better roommate and seems happy.

                        Thank you for your efforts, Virginia. Virginia has left no stone unturned in her search for Jeanie!
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                        Comment


                          #87
                          Thank you for news on Jeanie....
                          Linda~~~~

                          Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                          Comment


                            #88
                            Thank you, Virginia. I’m glad that Jeanie is in a more pleasant room, I wish she had better nursing and PT services. Heck, I wish she could go home.

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

                            Comment


                              #89
                              Jeanie: You are indeed ONE TOUGH COOKIE— you are in a tough jam. When Women speak up they are seen as unpleasant , angry, crazy. They are liked better when Women smile and are pleasant and keep thoughts covered: So, what you have there is SEXISM clear and simple The only strategy is to speak up regardless, but also comment on so and so’s kindness to soften the person.

                              And being DISABLED makes you a non person. This is a form of discrimination not to mention Civil Rights problems; People look through th disabled as through they are not really there as a human: They are simply a wheelchair that is a burden. I have run into this with certain doctors .

                              Because of these issues, I have started to bring DH to meetings. He is not seen as uppity when he asks a question, but rather pleasant and intellectually curious. And he is not in a wheelchair.

                              Your sons did that for you and it helped.

                              I thought that the Governor changed things so that people are now allowed inside group facilities like yours?

                              Yes I had my surgery, but it is a long haul to gradually tweak the pump, the doctors look at me like I am nuts, and not really worthy of their tim. I take DH now.
                              Bandages came off yesterday and th large six inch wide ace banadage came off my abdomen that was holding the pump in place and preventing a Ceroma(sp?)

                              Now I can shower everyday. Its weird to see your stomach with a pump outline! Its not in the abdominal wall, but above it. Leads go through incisions in back to receive Bluetooth adjustiments.

                              Jeanie: You are my hero: I recall the details of what you have done (and still are doing, just as a patient now) and you have real spunk.

                              RE SUICIDE: it is very important that survivors realize that the person was not in their right mind biologically when the suicided. Many suicide with perfect lives by suffer Major Depression or Bipolar Illness that is masked for the observer.

                              People also have survivor guilt, e.g. “If I only had picked up the phone and called more”, etc.

                              This mans suicide had nothing to do with his Faith: The Brain is. Very complex thing.

                              Comment


                                #90
                                Thanks for your response Sunshine. I will let Jeanie know all that all of you have said. She actually did not seem too upset by her sister's husband. I think it is because they have not been close in a long time. She seems very accepting. However, I was sorry later that I mentioned that on here, but she always tells me to tell y'all everything she says. She still thinks of herself as part of this group and I try to assure her she is. Neither her sons nor Jeanie have been vaccinated so that might be why her sons are not allowed inside. I am hoping that Covid will get better and that they will be soon. I also think that the facility is scared that they might possibly get it started in there. You are right she does have real spunk.

                                Sunshine, so good to hear from you. I was hoping to hear that you are more on the mend and able to do things, but like you said it is a long haul and can't be accomplished overnight. I am glad you can now shower everyday and also glad DH is going to your meetings. You are right on track about disabled persons and how they are treated. So glad you have some one to advocate for you and be right there with you. He is a Godsend.

                                I am thinking about you and pray for both you and Jeanie nightly. Keep us informed as much as you can. I have missed seeing you on here and hope you will be swimming again soon and giving us your step count.
                                Virginia

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