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Thread: Jim's Journey

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    I was so wrapped up in the chicken saga, I missed your posts!

    agate ~

    Thank you for your suggestion.

    COMMODE/PLUMBING

    A bedside commode is not possible for Jim, as he can no longer bear weight or walk. I fear falling, and I'm not strong enough to lift or help him. He wanted to try one, but when I pointed out the dangers due to his lack of mobility, the idea was kiboshed.

    The problem is that the plumbers have to access Jonathan's closet. Now that Jim is using Jon's room, that will be intrusive for Jim's intimate care needs, like changing his britches frequently after he urinates. Additionally, Jim will be exposed to whatever repairs must be made in the ceiling. I envision a lot of dust from removing and replacing the ceiling dry wall.

    It's impractical in every respect, including the fact that Jim sleeps most of the day.

    funnylegs4 ~

    CHICKEN

    Thank you for your thoughts on the digestibility of chicken. While that's likely true for folks, who regularly eat chicken, Jim hasn't had chicken or any kind of meat, fish or poultry for 24 years. He also has pre-existing digestive issues, including heartburn, indigestion, and reflux, which he gets after he eats just about anything now.

    I told him this afternoon that if he has any kind of digestive problems with chicken that he will have to give it up immediately. Depending upon his level of discomfort, he'll probably agree with me. All of the meals he loves, I can't make any longer, because he can't tolerate the food. Indian, Mexican, Italian, Greek ~ he can't handle any of them.

    I ordered Branston pickle and Picallily (British condiments) for his sandwiches last year. He was thrilled. Branston and cheese. Picallily and veggie ham. No more.

    This morning, he ate 1 1/2 slices of honey wheat organic bread with orange marmalade. He enjoyed it, but later he had indigestion and took one Tums.

    So, I'm just imagining how his body is going to react to chicken.

    I brought in Orgain today, and he thanked me, but he hasn't opened it yet. I continue to encourage him that this is what he needs to fill in the nutritional gaps and help him get stronger. He agrees and asks me for a cup of tea.

    The Ascites is a huge factor in how much he can manage at a time. With COVID-19, we simply cannot go to the hospital now for drainage.

    I want to get him back on Lasix, but I wanted to start him on Ceftin/Keflex first today. The pharmacist today suggested that he take it with food, and I agreed. But I didn't have it yet, when he ate the toast, and he's been sleeping and wanting a BM all day and not eating.

    Per his request, I microwaved a huge russet potato to slice and saute in ghee. With that he wants an egg over easy. I've been waiting since 10 a.m. to fulfill that request.

    If Dr. K knew what I go through every day trying to feed Jim, he would have more appreciation for how difficult it is. Maybe then he'd stop nagging me about feeding him better and getting more nutrition in him. Unless he gets a G Tube (he won't) or has TPN (he won't), I'm doing all that can be done.

    COMPUTER

    Thank you for reassuring me that all will not be lost, if our computer says "Adios!" Which laptop did you purchase? So I can use an Apple laptop with my ethernet modem, and get Apple on line to help me install my back up from this computer? Really?! Oh, that's great!

    The window on the left upper corner of the computer reminds me that as of today, it has been 201 days since my last back up. Hmm... I wonder what I've been doing for the last 201 days?

    I've got my notes somewhere, but I can't really remember what to do now. Every day is crisis management for me, and I'm getting really old really quickly.

    I am trying to use the iPad more. When Jim's awake I share YouTube videos, which I know he'll enjoy, and he does. I checked Instacart and our health portal recently on the iPad. I know how to access my email and BrainTalk. So, I have the most important things pretty well figured out!

    Mr. Rogers

    In the scene, when Fred's assistant tells the journalist that Fred loves everyone, "but he loves you more," my tears flowed. Fred embraced the disenfranchised, the victims of discrimination and injustice, the emotionally injured, anyone, who was hurting inside or out, usually both.

    I have met thousands of people on my life's path, but no one compares to Fred Rogers, who had the most loving, compassionate, and honest heart.

    I keep looking around. But there is no one like him now. No one to replace his beauty and humanity.

    Taking Care of Ourselves
    So glad that you are taking care of yourself and working from home. This is a scary time for all of us. We have to do what we have to do.

    I think staying at home is an inconvenience to most people, because it limits their freedom of activities. For diversion and humor, I watch late night talk show hosts home videos on YouTube. Many entertainers are sending out videos from their homes to keep us from going bonkers. The talk show hosts joke about their kids driving them crazy, and their wives going crazy having them at home instead of working.

    And that is after 2 weeks! Oh my goodness! These people are running out of ideas of things to do to entertain their kids after 2 weeks!

    Jim and I have spent every day with the exception of those, when he was hospitalized (and then we were on the phone a hundred times a day), and when he went to his mum's funeral for 5 days in 1999. We've been self isolating for about 10 years.

    Perhaps this is a blessing from the COVID-19 curse: families bonding, learning to love each other, use their imagination, make do with what they have. Pioneers did it. The earliest tribes did it. These are all wealthy people, of course, but they're doing their best to bring it down to our level. As I suspect most people are having the same experience of being cloistered with this families this long.

    My advice to all is:

    Take breaks. Separate for a little "you" time. Whatever that means: taking a shower, a walk, going to another room for a nap or to read, sitting outside on a porch or patio. Exercise any way you can.

    Fill your home with music. Find humor anywhere on the internet or TV, because laughter is healing and releases stress hormones.

    Be creative. Come up with a theme night for your family. Everyone dresses up like ... and you all have XYZ for dinner. Use your imagination or follow the path of many folks, who post videos of their creative ideas.

    Incorporate a ritual to honor those, who are on the front lines fighting to save lives from this virus without proper equipment and protection and for the people, who are struggling with it, in ICU, needing ventilators.

    In Italy, people sing from their balconies. In France, they bang pots and pans at 7 p.m. In Chicago, people sang "Livin' On a Prayer" from their windows and balconies.

    We may not be that dramatic, but we can set aside a special time every day to think about and pray for these people, and everyone around the globe facing this pandemic.

    We are isolated, but we are not alone. And we need to support our troops right now. Everyone from doctors, nurses, EMTs, paramedics to people who deliver our groceries and packages and keep our stores running. They are putting their lives on the line for us, and they deserve our gratitude and respect.

    Oh, and now the CDC is saying that it is a good idea for all of us to wear a mask! Of course! Because we don't know if we have the virus without symptoms or someone else does. Every one of us should be wearing a mask right now!! But where are those masks for all us? Hospital and medical personnel cannot get enough masks. We can't get toilet paper, let alone masks!

    It is very difficult to stay balanced and unafraid during this crisis, when there is an abundance of chaos.

    That's probably contributing to the cabin fever of families worldwide. How long will it last? When can we be free again? Anxiety producing.

    ANN~

    Thank you for your reassurance that Kefelx might be easier for Jim to tolerate than Augmenten.

    I am sure that you know, as well as many others here, that at this stage in Jim's journey, everything is precarious.

    Dr. K said that palliative care/hospice might be next. Well, he's already getting that essentially from me and Nancy.

    Jim refuses morphine or valium or any other drug Nancy has offered him on her last 6 visits. He still wants to schedule a "man cave" date with Nancy's husband, so they can talk about jazz, sports, movies.

    Jonathan's First Angelversary is rapidly approaching now.

    As hard as it is to believe, I do not have words to describe how I am feeling. But, I must repress those feelings to continue to be strong for Jim and see him through this ordeal.

    There really is no other way than to live from day to day.

    We thank you all for your prayers, love and support and we send this back to you ten-fold.

    Be safe, well, and stay home.

    We love you ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Hi Rose,

    No worries! To answer your questions, yes Apple should totally be able to help you. You may have to order a small white attachment to connect the ethernet to the laptop but it can be easily ordered. The white attachment just has a bit that goes into the ethernet cable and makes it have the same size peg that the laptop has a hole for. Had a Macbook Pro first…LOVED that because the GB storage was bigger…then switched to MacBook Air because my store ran out of the Pro model when my MacBook pro went “Adios!" after 7 years. When I got the MacBook Air I called Apple they told me what to click and tada…perfect Time Machine transfer. :)

    Re: Chicken. I’m surprised John could not find organic. All my non health food stores here and when I travel have organic meat, especially chicken. I wonder if Jim’s main issues are the seasonings and the fact that he stops eating at times. Maybe his GI tract has become hypersensitive because he kinda goes without when unwell. Surprised Italian food causes a problem. Can you try pasta etc without acid based ingredients. If he’s like me, it’s the acid in lemon and tomato etc that causes problems.

    Yes, Mr Rogers had the special talent of making everyone feel uniquely loved and truly wanted. He won't be forgotten.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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