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    ((((((Ralph)))))) ~

    What Marty is being put through is just appalling. I realize that you live in a rural area, but having 3 appointments in a row for 3 days, and driving 60 miles for a physician conference is unbelievably difficult for any cancer patient. I imagine that these three hospitals have different levels of available care? What is the reason that Marty can't go to the closest hospital for all of his care?

    Is it possible for you to contact Marty's sisters and brother via email? Or by phone? If so, I recommend that one of his siblings calls the hospital and asks to speak to the Ombudsman or a Patient Representative. That sibling can explain what Marty has to go through to get to/from the hospital(s), and that he relies on his neighbor friends to transport him. Perhaps something can be done to correct this problem for Marty.

    If Marty received Hospice care, I would expect that a Hospice nurse would visit him in his home and would swab him for COVID. A Hospice nurse might also be able to set up virtual conferences with Marty's doctor, during the nurse's home visit. The nurse could have a laptop or iPad, and connect with the doctor on that device, then allow the doctor and Marty to converse. Marty wouldn't have to do anything but talk to the doctor in this situation, and the nurse could give report to Marty's doctor about his condition at the same time.

    Both cancer and COVID are excellent reasons for Marty to have home care. Even vaccinated, he may be susceptible to getting COVID. Otherwise, he wouldn't have to be swabbed all of the time. He is safer and more comfortable in his home.

    I think Marty needs someone to advocate for him, and that would be the role of his siblings.

    Marty would do much better taking Orgain supplements than Ensure. Ensure is chemicals. Orgain is plant based, created by a physician, who was also a cancer patient. Jim did very well with Orgain supplements, and he liked the taste, until he lost his taste buds, and nothing tasted good to him.

    Your local markets and drug stores may not carry Orgain, but it's possible and might be worth a call to a few of them. If they don't carry Orgain, you can ask them to do so. Otherwise, it is available to be ordered on line. I hope this link works:

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

    From your descriptions, it sounds like Marty is weak and fragile. He isn't getting enough nutrition to generate energy. I worry about him falling. The time may be approaching when he will need 24 hour care.

    As you know with Ann, things can change quickly.

    I am sure this is difficult for you as Marty's dear friend. You and Marty are in my prayers.

    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


      Reply from Tom Cat:

      What we hope to get with Marty is a meeting with his sister here, the doctors in charge, his other friend, and I. We need a plan for what to do. His medical personnel do not understand that his friend Phyllis and I have many limitations with our own health. Me with multiple blood disorders and osteoarthritis, and Phyllis with pins in her shoulder & hips from recent broken bones.. I possibly could pick him up if he fell, but not Phyllis.

      He's thanking us all the time for our help, but he needs to know he has to make decisions, now, while he can. This is hard for him and me, knowing how much we took care of everything ourselves. Letting go is not easy, even when we know it has to happen
      .
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

      Comment


        I think that is a good plan that they have laid out for Marty. For the sake of all concerned I hope Marty's sister can be there and appointments set up very quickly. I know Marty is so fortunate to have Ralph and Phyllis to help him like this, but as Ralph said they have limitations of their own and of course Marty is aware of this. I can only imagine how he must feel about them having to help as much as they do. It is a sad situation.
        Virginia

        Comment


          From Tom Cat (Tuesday):

          Can we say cold and climate change, or whatever? Got up to 26 this morning, and waiting for a high of 40. Everything has put a halt on growing for a few days. The magnolia is dropping its flowers now. The tulips are up with buds, but I think the flowers are waiting for warmer weather to open up. I have to put wire over all the tulips, or they become deer snacks. Still have 2 deer in the back yard in the morning. And the turkeys are all over the place.

          Marty's sister, Kay, is here right now, taking him to his medical appointments. And I'm taking over the coffee right now. Take care.
          Later:

          Had coffee with Marty and his sister this morning. Heading down to the mailbox shortly, to send a letter out. No turkeys running around yet this morning, but they move around throughout the day.

          Cats asleep right now. They got a new stainless steel water fountain yesterday, since the old one of about 5 years, was leaking around the motor. Smudge hasn't figured out yet if she can stand on top of this one yet.

          Been working outside for a few hours each day now, which has given me a better appetite. Take care.





          Here's Joe's finished shed, and my golf cart loaded with rock boulders to put around the foundation. Some ran up to 150 lbs. I rolled them up into the back and side of the golf cart, on a board ramp. Worked the old muscles and joints up good for a couple days.
          Last edited by agate; 04-21-2021, 08:22 AM.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

          Comment


            Ralph is a good neighbor to have. Looks like Joe has a good shed.
            Virginia

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              From Tom Cat today:

              What is awesome is the floating dock that Joe put together on and off in the last couple of weeks. It floats on 6 55-gallon plastic drums. Saturday he with 3 friends took it to the other side of the small lake here and floated it across. They had a small electric outboard motor on it. It looked like a modern version of the Huckleberry Finn raft. It's attached to my dock now. A great 8 X 12 ft. fishing platform. Quite a weekend.

              Below freezing in the last week mornings, but warmer today. Marty is doing a little better and drove himself to church yesterday. Cleaning up and grabbing a cup of coffee. Joe will be over around 8 AM. We'll be taking my golf cart over to a place about 30 miles out. It's 20 years old and has smoking exhaust much of the time now. Probably needs some major engine work. It's my main mover of things here.

              Catch you all later. Take care.






              [I hesitate to post photos of people without their permission but these people aren't very easily identifiable in the photo and so maybe it's OK. There's a nice view of the lake he's talking about in the post above.]

              [This is] a large tom turkey, this morning, displaying in front of a couple of hen turkeys. He has a brilliant red waddle on his neck. These wild turkeys have brilliant, reflective colors in the sunlight. Take care.
              Last edited by agate; 04-26-2021, 03:06 PM.
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

              Comment


                The floating dock makes me dizzy just thinking about it.
                Virginia

                Comment


                  From Tom Cat today:

                  Things are going fast here. After Joe & company got the raft attached to the dock he got a pontoon boat, which we took a ride on yesterday. I got to see parts of Morris Lake I never saw before. The lake actually consists of 4 small round lakes, connected by small channels. The lakes run from around 20 to 40 feet deep. That was neat.

                  I'm still hustling at the house trying to get the house straightened out inside, the front yard cleaned up, an old homemade kayak refurbished, and prairie and feed plots put in place . Hopefully all before the end of May.

                  Marty's doing a bit better, and they're putting him on some new meds. He asked about palliative care, but the main office said he's too far out for them to come to him, every week or so. I can't figure out why, with this regional hospital, & 7 satellite hospitals, [they can]not have palliative personnel at several of the regional branches. More on this later.

                  I need to dig out my other golf cart, to take it in Monday, and pick up my other one, which is now repaired. This one doesn't run at all, and we'll have to winch it into the trailer and push it there. Then I still got a blower to take off the John Deere lawn tractor, and a mower deck to put on. Crawling on the ground and doing this takes it out of me. I haven't found anyone to do this for me yet. In between I'm taking a lot of breaks. These old bones just don't enjoy this any more.

                  After on and off freezing weather, we are finally getting days in the 60's and nights in the 40's. Really dry right now. Take care.

                  Pictures of the boat, the dock , and several areas of the lake:


                  Last edited by agate; 05-01-2021, 10:36 AM.
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                  Comment


                    I have no idea why this post of mine turned up twice. This probably shouldn't have happened but I can't figure it out. I'll ask to have the second one removed.

                    Virginia, I guess we can be glad we're not having to deal with boats at the moment.

                    It just doesn't make sense that his friend Marty has been told he's too far out to get palliative care. I don't think they're that remotely located, really.

                    EDITED TO ADD: Sometimes there is magic in the Internet. The duplicate post vanished as I was editing the post by removing a duplicate photo on there. Somehow that second post with all of its photos just disappeared. I'm glad it did.
                    Last edited by agate; 05-01-2021, 10:40 AM.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                    Comment


                      Agate, the little gremlins are actively working away when you double post.

                      I would like you to ask Ralph a question for me when you get a chance. Many years ago before Ann got so sick, but was still pretty much unable to walk, I think I remember her saying that she sometimes took the golf cart and road down to the lake. Am I remembering this correctly? Looks like a lovely place to vacation and I think they had friends back then that would come for awhile. Ann would fix food, Sometimes she would fix ahead as much as she could. Did I dream all this?

                      I am amazed that Marty cannot get palliative care with the hospitals so close. It just isn't right.

                      Thanks Agate for finding out from Ralph if my memory is still in tact.
                      Virginia

                      Comment


                        The above post is green and then underneath the post over on the left hand side opposite the edit it has a little block that says "Unapproved".
                        Virginia

                        Comment


                          Originally posted by Virginia View Post
                          The above post is green and then underneath the post over on the left hand side opposite the edit it has a little block that says "Unapproved".
                          Do you mean my post just before yours? Is that the one that is showing up green with the "Unapproved" block? I posted it at 11:33 AM according to what I'm looking at--the time might be 3 hours later for you.

                          I think that sometimes the admins are tinkering with settings, and while that is going on, things here on the board may be working oddly. I'm just guessing. I'm assuming they're keeping an eye on our posts and are catching anything that shouldn't be happening. If you don't mind, I'd like to copy your post and put it in the Feedback Forum, Virginia, but I'd need to know just which post it is that has these problems.
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                          Comment


                            It is my post Agate. The one where I am asking you to find out from Ralph if I remember correctly about Ann taking the golf cart to the lake. Actually, it is post #235. Your post are all fine. The Admins can have it.
                            Virginia

                            Comment


                              Virginia, maybe one of your settings is slipping. It happens sometimes, particularly with fonts and their sizes and colors. Next time you post, maybe check into that Text Color symbol at the top of the message window and make sure it's on the top setting (Automatic, which comes out black). It might be accidentally setting itself to green for some unknown reason.

                              I've forwarded your message to Ralph. I'm curious too because I have very similar recollections--and she did really impressive amounts of cooking, often for fairly big crowds of people as I recall.
                              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                              Comment


                                From Tom Cat today:

                                Yes, Virginia, until 2012 when had her major MS setback, she did much on her own. After that I took over the driving. She went over parts of the state for a citizens' advocacy group, to help them set up programming, in the car by herself. She could put the wheelchair in the back seat, close the door, move along the side and get in and drive. If it had a motor and a gas pedal she would drive it.

                                Yes, she did take the golf cart all over the property, but I had to help her on and off it. In the last 5 years or so she was confined to the wheelchair and had to use a handicapped, wheelchair-accessible van. That van I sold this spring, after having it on the market for over a year.

                                She cooked up a storm for all kinds of friends and relatives, until the last year or so, when 3 cognitive setbacks, with pneumonia and/or UTI, took her down. Until almost the last month she made the main meal, and they were great different meals each day. Chinese, Italian, Mexican,and American dishes were on her menu. Neither of [my?] parents were the cook she was. She learned to cook on her own, after we got married. She was downloading recipes up to the last 2-3 weeks of her life.

                                She was a strong-willed lady with many assets, and a few difficulties too, yes? I hope that helps you better understand who Ann was. And of course she could write as well as any editor out there. Enough said. She humbled me in many ways. Take care.
                                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

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