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    #46
    This is so disheartening, Virginia. I’m sad to read that she is getting less PT.

    Thank you for being our link to her.

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

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      #47
      I forgot to say that the $35.00 sessions are only 15 minutes each. So in all she gets 45 minutes a week. Just not enough IMO. It is depressing, but I am determined to keep on calling as long as she seems to enjoy it as much as she did yesterday.

      Rose, she has been in there since August I think. It is the lack of progress that is concerning for me.
      Virginia

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        #48
        $35 for 15 minutes of PT?

        So even PT is priced beyond the reach of many people, and if insurance stops covering it, you're just out of luck.

        PT is often needed by aging people. Why do I get the impression that after a certain age, we just don't matter much any more?

        We're not really expected to be able to see, hear, or even eat, for instance. I don't know how many health-care arrangements I've had over the years but vision care, hearing aids, and dental care were often parts I had to pay for entirely out of pocket.

        Yes, a person can survive indefinitely on a liquid diet but golly gee. Yes, a person doesn't really "need" to hear most things (fire alarms would be nice to know about though), and what do people really "have" to see if they're no longer gainfully employed?

        Well, it's nice to be able to find the medicines we've been prescribed instead of groping around and taking the wrong pill.

        Oh yes. We probably don't really need those prescription drugs. After all, we're going to make our exit at any moment now.

        See what I mean? What all of this adds up to is that the older you get, the less inclined we are to be entitled to medical care and medical aids.

        Jeanie deserves far better than this.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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          #49
          We are seen as NRP’s (Not Real People).

          Comment


            #50
            ((((((Hugs to All)))))) ~

            Who remembers in 2020, when the news emphasized that people over 65 were at greater risk of dying from COVID, and some political figures were willing to sacrifice us at the altar of deceit and corruption?

            We were considered to be disposable, unnecessary, better off dead. That is not new. We've always been viewed this way, along with young people, who have severe disabilities, like my sons. A drain on society, because we depend upon social services programs to get us through our old age. We are retired, so out of the work force not putting money into the system.

            It doesn't matter how hard we worked all of our lives to provide for our families and support the economy, and all of the hardships we endured through those decades. All of the taxes we've paid, the contributions we've made to our communities, the country, the world, mean absolutely nothing.

            We're old, and we had the audacity to survive as long as we have, despite all of the obstacles in our way every second of every day.

            We end up in "rehab" facilities, because they are profit making drop offs for us. The nursing home industry has always boomed, and it still is booming. One patient dies, another patient takes that bed.

            In the 1990s, we had to fight off a nursing home conglomerate from taking over the IHSS (In Home Supportive Services) program. They are big, multimillion dollar, greedy cutthroats, who don't give a fig about quality of life or care.

            Jim and I attended many meetings and rallies, and I wrote stacks of letters in opposition to the takeover. We prevailed. But that didn't end the prevalence of nursing homes.

            The government is to blame for not recognizing the economic and social benefits of in-home care. Nursing homes have strong lobbyists.

            The attitude toward us is: "They're old, and they're going to die soon anyway. What's the difference?"

            If we really mattered to those in control, we wouldn't be making hours of phone calls and online searching, begging to get vaccine appointments, only to be put off repeatedly. Yes, you're in the right tier, but there are no available vaccines.

            And when our Governor was trying to explain "COVID Crisis Mode," which was code word for "choosing who lives and who dies," we saw a list on the screen that the decision wouldn't be based upon age, gender, religious beliefs, race, etc. And I thought, "They will definitely consider age first."

            Jeanie does not deserve this. None of us deserves this.

            I don't know what to do about it or make it better for Jeanie. And that is what troubles me.

            I apologize for my rant. Obviously, this issue really infuriates me.

            Love & Light,



            Rose

            *Virtual Hugs Are Germ-Free!
            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.

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              #51
              Thank you, Virginia, for updating us.

              Could you PM Jeanie's address to me.

              Comment


                #52
                PARSI, look at your P.M.
                Virginia

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                  #53
                  Sad News Everyone! I talked to Jeanie today and it is what I thought it would be. She is in there for good and will not be going home. She seems resigned and not too upset, but I am not sure how long she has known. Her sons have been paying $100.00 per week for PT 3 times a week. She said that meant that there were 4 days a week when she did not have any physical therapy and that in order to get any better she needed it every day.

                  Her sons told her they felt this was best for her because she had someone to take care of her and she is being fed 3 meals a day. She has seen each of them once. They have a screened porch that they can wheel her to and the boys have come one at a time to see her. They have to suit up in PPE and she has to wear gloves. They are allowed to stay 20 minutes. I told her when the COVID situation is better they might be allowed to see her longer and not have to be wearing PPE. Like her, they are not going to get the vaccine.

                  I told her it has made me more aware of how careful we all need to be of falling. She suggested I tie a rope to a plastic laundry basket and sit on each step and push myself up when I go upstairs and pull the basket rather than try to carry things. Then just let it drop in front of me when I repeat the process coming down. It is a good idea I guess. I would have to do that for 14 steps, but it would beat falling. I don't go up there a lot anymore. I went for the first time today in probably 3 weeks.

                  Jeanie has a new roommate. She said they just came in and took the other woman out and brought this one in. She says this one talks. She doesn't know why she is in there. She guesses she is maybe in her 60s.

                  Jeanie has started reading. Her daughter-in-law gets books at places like Goodwill and brings them to the desk. She said her daughter-in-law only pays about $1.00 per book. She also has Jim's iPad, which he put a couple of games on. She doesn't like using it. She said she couldn't see it good so she just reads. She says the books are easier for her to see.

                  I asked if they always put her food on the bed tray so she could get to it. She says they put it in her lap because she has the bed tray full of stuff. She said she has gained weight. She eats a peanut butter and jelly sandwich every night after supper. I can kind of understand. They give her dinner at 5PM and the next time they eat is 9AM the next morning. That is a long time.

                  The place seems to be pretty nice and I am sure it is clean. Again, she spoke of how much better it is than the other one she was in the last time.

                  She asked how everyone is and sends her love to all. The rest of the conversation was just general stuff that I can't remember right now, but if I remember anything I will let y'all know. She did say her friend from Canada is a registered nurse and offered to come live with her and take care of her. She said that would not solve the problem because she needed someone who would wash her when she went to the bathroom, etc. Also, she says her friend is bi-polar so she couldn't live with her 24/7. I think that is about all for now.
                  Last edited by Virginia; 03-12-2021, 03:56 PM.
                  Virginia

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                    #54
                    I'm so sorry about this but I guess everyone here knew that there was a distinct possibility that she'd be staying there.

                    It doesn't sound like her old life, and I'm sure she'll miss her own place (and wasn't there a dog?). I wonder if there's any chance she could be online where she is but so far it hasn't seemed likely at all. It might brighten up her days to have that contact with the outside world but if she's not feeling up to coping with being online, she's the one who knows best what she can tolerate.

                    Thank you, Virginia, for maintaining contact with Jeanie. I'm sure it means a lot to her to hear from you.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                    Comment


                      #55
                      Agate, she misses Lacy, her dog very much. We talked about if she could have her dog it wouldn't be so bad.

                      I again briefly brought up if there was a way for her to be on the internet and she indicated there was not. She says she can't even handle the iPad. I must say she seemed to be in better spirits than I would be, but who knows how she really feels. It would be a hard thing to deal with. Jeanie was use to getting in her van and going to get her hair done and her nails and a lot of things. On the other hand, she might feel somewhat relieved to just hand things over to someone else to deal with. I kind of got the feeling that this was sort of a recent thing as far as her finding out she was going to be there for good, so I didn't ask a lot of questions. We talked a lot in general, but not about that.

                      I again told her how much she is missed on here.

                      I did tell her that I was going to tell everyone that she would be there permanently and she was fine with that.
                      Last edited by Virginia; 03-12-2021, 06:35 PM.
                      Virginia

                      Comment


                        #56
                        This is such sad news - someone - our Jeanie losing control of her own destiny, like Sally before her.

                        People should be housed where they will thrive. Home, a group home, a facility with good rehab services and nutrition.

                        There should be a concerted effort to meet the individuals needs to help them maintain function and to improve function when possible. Fifteen minutes of PT three times a week is nothing. It probably takes that long to get Jeanie in and out of bed.

                        A tech person should be there making sure everyone that wants to can use tablets or laptops for health topics and their own recreation.

                        And why can a family member only visit for 20 minutes? That’s a lot of effort for Jeanie for such a short time.

                        I am sad and angry about this and have never figured out why she doesn’t have better insurance.

                        Thank you Virginia for being in touch. I am sure she enjoys talking with you.

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

                        Comment


                          #57
                          Ann, since her sons have stopped paying for the PT she will not even get the 15 minutes 3x week.

                          I think Jeanie would do very well in an environment where there were people she felt comfortable talking to and there was more interaction with people she enjoyed being around. I remember one time when Cat was in a rehab they were able to order what they wanted to eat. I think Jeanie has to just take what she gets.

                          As far as her insurance is concerned she had to go on Medicaid when her allowable period of PT ran out with Medicare. She had no choice as she didn't have any long term care insurance to help cover it.

                          I too was shocked when she said that her sons were only allowed 20 minutes each. I think this may be due to COVID. When all of that is normal again maybe they will be able to go into her room and stay awhile with her. It takes two people to get her up and they have to wheel her to another floor where the screened porch is located. Then of course they have to get her back in bed. It all has to be timed. She lets them know what time her son will be there so they will get her to this area and her sons have to be there 15 minutes ahead of time to get into the PPE. I think when we are over COVID a lot of that will change. I don't know if all of them agreed to be vaccinated if that would help the situation. But none of them will.

                          It does seem that a place that large could afford the personnel to help the people more with some of the things you spoke of. I don't want Jeanie to begin to go down mentally. I know she is having a hard time with this, but in such a closed environment she could begin to take a downturn mentally. When she hears my voice she perks up a little. Needless to say, I will continue to call her and strive to say what I can to cheer her. It is hard because a lot of times I don't know exactly what to say. Yesterday I talked to her about the trip she took to her last high school reunion. We were so worried about her driving alone in her van. To put it in terms that we can all relate to I think she was gutsy and I would like her to remain that way.
                          Virginia

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                            #58
                            I too was shocked when she said that her sons were only allowed 20 minutes each. I think this may be due to COVID.
                            I'm betting it was due to COVID too. Last June when my 97-year-old neighbor was in a rehab place, no visitors at all were allowed. Anyone visiting had to wave at her through the window. I believe that some places have relaxed those rules somewhat now and are allowing brief visits of 15-20 minutes provided masks are worn and social distancing is observed.

                            EDITED TO ADD: This new easing of regulations might help Jeanie to have visits:

                            Only registered and activated users can see links., Click Here To Register...

                            A tech person should be there making sure everyone that wants to can use tablets or laptops for health topics and their own recreation.
                            Absolutely. We live in a world where Internet connectivity is almost taken for granted. Even my building used to have a tech person come in once a month and set up appointments for people who wanted to know more about their devices or to start learning about them. Not happening any more since COVID, and maybe if things start opening up more soon, that will be something that will be possible for Jeanie.
                            Last edited by agate; 03-13-2021, 01:10 PM.
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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                              #59
                              I am so sad for Jeanie that her health has declined so rapidly and that she cannot live at home.
                              In Florida, they are making a concerted effort to vaccinate all people and providers in skilled nursing homes etc. I am hoping that allows more visits with her sons.

                              The governor just dropped the age to 55 for getting a vaccine. I don’t know the son’s age. If they have predicting sig health risks, they can also get the vaccine in Floirda.
                              We also see that if you’re residential enclave is wealthy and had contributed to the governor’s re election campaign you can get vaccinated despite your age and health.

                              The Pres. Thinks all Americans will be vaccinated at least once by May .

                              I cannot recall if its Florida, but some governor has decreed that relatives be allowed to have extended visits with loved ones in care facilities.

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                                #60
                                Sunshine, Virginia said that neither Jeanie nor her sons plan on getting the vaccine.

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

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