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Thread: Jim Has A Fever. ER Bound

  1. #141
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default The Past, Present, and Future

    ((((((Donna)))))) ~

    Thank you so much for your ideas and loving support.

    I have begun creating an outline for our Will. It is daunting, but it needs to be done. I've tried discussing it with Jim, but he thinks it will all work out after we're both gone. Nothing to worry about. So, I've tabled the conversations with him about it, because it's clear he's either getting confused or doesn't want to think about it.

    It's frustrating, because everything is "ours" not "mine." In the end, I know that I'll be the one to develop the plan, contact the attorney, and ensure that everything is as it should be. But, we are partners, and I want Jim's input as I put the plan together.

    I'm thinking about everything from our home to my mother's bell collection. The amount of things in between is just enormous and overwhelming to me.

    As I think about this, I need the easiest, least taxing solution to everything. Maybe a school could use Jim's tools, but that will require me to contact schools to find one, then get the tools to them or arrange to have them come to take them.

    It would be different, if I were younger, not utterly bereft, and not terrified of losing Jim.

    I do want to donate Jonathan's wheelchairs and any of his usable medical supplies. Eventually, when we have a small car to replace the van, I want to donate it to someone, who needs it. It's a 1998 raised roof van and only has 28,000 miles on it. When John drove the van for the smog check, he remarked at how smooth the ride is for such a large van. So someone could get many more years out of it.

    As much as I know I should be planning for the future and thinking about these things now, I also need to stay in the present to care for Jim. I also need to grieve for Jonathan properly. There are so many things that I want to do to honor Jonathan. So many things.

    It's Friday, and Friday is a difficult day for me, because Jonathan and Michael passed on a Friday. All day long, I've been chasing those images from my mind.

    Meanwhile, Jim sleeps a lot during the morning and afternoon, because he's up all night watching TV and drinking tea. This limits how much I can accomplish in the day. I have to squeeze in tasks around making Jim's meals and cleaning up the kitchen, when he's awake. Low WBC.

    His vitals are fine, but he still needs his breathing treatments after he's slept for a few hours.

    Today, Jim told me that the necks of his t-shirts seem to be tighter, and he wonders whether his neck is getting bigger. I wondered whether it's his distended belly getting bigger making the shirt crawl up to his neck.

    His swallowing is very good. He scarfs back every meal I present to him. He's half done, before I sit down to eat my meal.

    Jim also has strange blood spots all over his arms, legs, and one on his neck. When Nancy visits next week, I will ask her to check him and tell us what they mean. It's not a rash.

    He's still off of O2 and walking to/from the bathroom and the kitchen. He keeps insisting that he wants to climb the stairs to take a shower. I keep reminding him that he was out of breath 10 days ago (yes, I've been asking every day) when he had his shower downstairs.

    Later, he said that if his sleeping was preventing me from getting things done, he'd go upstairs and sleep in our bedroom.

    I told him to stop talking about climbing the stairs, because it is not going to happen. Too much exertion. NO! Plus, I'd have to carry up all of his pillows to our bedroom. Then back down to his futon. Um...NO!

    I'm getting a little tired of this shower downstairs issue. He had a very nice shower 10 days ago, and he enjoyed it. Why is this still a problem?

    He hasn't shaved for 10 days either, so a kiss is akin to nuzzling a hedgehog.

    Jim says he's not dirty, because he doesn't do anything. I've reminded him that Jonathan and Michael were bathed every day, and they did less than he does.

    Now, I'm in the position of nagging him. It took a week to get him out of bed, so I could change his sheets, and now it's taking 10 days to get him to bathe and shave. GAH!

    And now you have the mishmash of my life as it is currently. There are so many directions. Which way do I turn?

    I address the immediate things immediately.

    So, next is Jim's breathing treatment, while I make his requested dinner of fajitas with guacamole. Sounds quick and easy. But I'll be on my feet for at least an hour, plus clean up and putting away the dishes in the dishwasher, which I ran earlier today.

    I love to cook for Jim, because he enjoys everything I prepare and thanks me profusely. But I am really tired, struggling with back pain, and standing on the kitchen's concrete floor is exhausting. If I could hire anyone, it would be a chef. But we can't bring in anyone from outside to cook our food, or accept food from others or from restaurants. Low WBC.

    The night shift begins now.

    Thank you for your love, prayers, and constant support, Donna. We send you our love and pray for you, Jim, Nick, Natalie and your beautiful family.

    As we love and pray for all of our dear friends here.

    Love & Light,



    Rose
    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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  3. #142
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    ((((((Virginia)))))) ~

    I'm so sorry that I missed your post!

    Thank you! You are so very right. Jim trusts me to make decisions, and while he also appreciates having input, he has to be in the right mood for it.

    Jim has commented many times that having me with him in the ER, the Cancer Unit, at the acute care facility, in his last visit with Dr. K, made him feel better and safer. He wasn't alone on his journey with me at his side.

    So, I'll just keep compiling the information for our Will, and let Jim think about other things, like the two of us driving to the coast for a day.

    I hope we will.

    Love & Light,



    Rose
    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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  5. #143
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    Hi Rose,

    I couldn't sleep so I thought I'd catch up on your life. Now I'm exhausted after reading about your day. <grin>

    Jim might have cherry angiomas all over. I've had them for many years, they began on my trunk and now have spread to my limbs.

    I've asked many doctors about them, I will often ask a completely unrelated doctor about them just to see if they may know something new (which they haven't up until a couple weeks ago). They are of vascular origin but are considered completely benign and inconsequential. Google them to see if it's what he has.

    I agree of how important it is to have Wills. If you have mirror Wills, you can really create it for yourself, then see if Jim agrees and you can tweak it with him at that point. The easiest way is probably identifying who the executor will be then leave them broad powers to dispose of your estate - that way your big present day decisions will be who is the executor and who will be the beneficiaries. The rest of the decisions can be the executor's to make. I wonder if John would be willing to carry through on some of your donations now to alleviate that burden from your shoulders and separate them from decisions about Will prep. Wills don't have to be a complicated, stressful process. Perhaps phone a nearby law firm and make it clear that you need this to be as simple and stressfree as possible. You can leave all the detailed decisions to your executor if you want. Just brainstorming here.

    I'm very glad Jim is eating well and is still off the 02. Hopefully he will get it out of his head the notion of moving to shower upstairs for the time being. Let him be aspirational in that goal, but he needs to meet other milestones before it's realistically considered.

    I'm very sorry Fridays are so difficult for you. It is also the day that Jesus is thought to have died. This makes it a day of the week when momentous people began their incorporeal journey not tethered to earthly burdens or suffering. Perhaps this can be of meaning to you.

    I think Virginia and I are both with you in how nice it would be to have our own chefs!

    May I ask what is involved in a "breathing treatment"?
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  7. #144
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    ((((((SuzE-Q)))))) ~

    I hope my day tired you out enough to get some solid sleep! I figure that my posts can have one of two effects: 1) wear out the reader to the point of sleep, or 2) bore the reader to sleep. Either way, I've got it covered!

    ANGIOMAS

    Thanks for the information about angiomas. I did Google images. Jim's spots aren't raised, and they aren't always round. They are under the skin. He has a big long red one on his arm and on his leg. I'm wondering whether it's liver-related, cancer-related, WBC/platelet-related ... Nancy will have a complete body assessment of Jim on Tuesday, when she's here for his blood draw. If she doesn't know, she can take photos with her phone to send to our wound care nurse and to Dr. K.

    WILLS

    Thank you for your suggestions about our Will. We do have an executor, and Jim and I have made decisions about major things like the disposition of the deed to the house and any financial assets we may have left.

    I have been through two probates in my family. After my father died, and after my aunt/Godmother died. I was her executrix. It was a nightmare. As was my parents' probate. They had straight-forward Wills, but greedy family members can find sleazy lawyers to make life a living hell for the executor.

    I want to be specific to avoid any misinterpretation. My aunt's lawyer used a vague term, "residuals," which got the ball rolling among all of the relatives with dollar signs in their eyes. Nope. That cannot happen with our Will. But then, none of them have been in contact with us for 18 years and have absolutely no claim on our assets whatsoever. I may even include a list of names excluded specifically from our Will, so there are no misconceptions.

    DONATING

    When I am ready to begin donating Jon's wheelchairs and supplies, I will enlist John's help. I know that he will be happy to help me, because he asks us all of the time if we need anything. I'm just not there yet, and I likely won't be there for quite awhile. It has only been 70 days, since Jonathan passed, and I am still just barely functioning, because I have to function.

    I have to use the energy I do have to meet immediate needs and concerns. with Jim's current erratic sleeping habit, I'm not getting housecleaning or laundry done. I have to devote my time and energy to that, before I spend time cleaning out Jon's closet and room and donating. I'm still proud of myself for putting away the Christmas decorations. I'll bask in that accomplishment for awhile, until I have time to accomplish other major projects. What am I saying?! Every project is major to me.

    FRIDAY

    Until you mentioned it, SuzE-Q, I had forgotten that Jesus died on a Friday. Well, I've not forgotten exactly; I've just not connected the dots. Yes, it does have meaning to me. The pureness of Jonathan and Michael befits ascending into God's Arms on the same day as His Son.

    BREATHING TREATMENT

    Jim's breathing treatment is simply Albuterol in a cup, steaming up through a nebulizer. Jim doesn't use all of the attachments. He has a "blow by," which means that he holds the cup around his chin and breathes in the medication. He can have this treatment every 4 hours as needed, but fortunately, there are times when he can go 5 to 6 hours without needing it. The Albuterol opens up the airways and relieves chest tightness and promotes coughing up plugs.

    NO SHOWER; NO REST; AIR TRAFFIC

    Jim intended to shower today, but he was too tired and tried to nap in the morning and the afternoon. It was difficult since it was "Airport Day" at the nearby municipal airport. From 10 a.m. to 4 p.m., airplanes and helicopters flew over our house. The copters rattle the dishes. I stepped outside this morning and saw 6 small planes flying in formation. OVER OUR HOUSE!

    We are also under the LAX flight path, mostly for landings. It makes me so nervous.

    Jim has been watching a lot of WWII movies on TMC. He knows that I don't like to watch war movies, so he turns the channel, when I'm present. I have PTSD, and it's in full swing now, so I don't need to see death and destruction.

    As I listened to the planes and choppers over our home, those are the images that entered my mind.

    I reminded Jim to take his Lasix at 1:00 this afternoon. He didn't. He forget in a millisecond. It will be a long night, and another day of napping tomorrow.

    Thank you, SuzE-Q, for staying with us on our journey. We send you our love and healing prayers ~

    Love & Light,



    Rose
    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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  9. #145
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    I think Jim has purpura, which wouldn't be unexpected due to his low platelets and history of steroid use.
    Last edited by callyflower; 06-22-2019 at 06:09 PM.

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  11. #146
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    Hi Rose,
    I am so glad to hear of Jim's continuing progression. I wish he had more energy for bathing and shaving though. I wonder if a bit of 02 to get him upstairs might help even if he thinks he doesn't 'need' it? I'm thrilled about his appetite - you are such an amazing and careful chef - always the healthiest options and everything sounds delicious. I always look for your updates - I can't imagine how tired you must be (I know, I always say that). You are so dear to me and I am always thinking about YOU, Rose. I hope you are getting some sleep and that you are eating well too (there are two people who need care now in your house). IMG_1431 (1).jpgIMG_1431 (1).jpg Rose, my sister and I are up north at our cabin that our grandparents built - we painted the basement which had been neglected for many years. We painted the old furniture too, including the old victrola. I think it looks so nice! Sending you lots of love and gentle hugs, xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  13. #147
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    Thanks for explaining the breathing treatment, Rose. I'm new to the world of asthma and have been trying to figure my way through the best way to treat myself so your mentions interested me. Do you know why it works better than an inhaler?

    No, you certainly don't need to watch war movies. I think there are some kind of headphones now that allow a person to listen via them without the volume being up in the room. I have a lot of difficulties with planes overhead too.

    I agree, putting away the Christmas decorations was big. One thing at a time and no rush if it's not pressing.


    Sending you wishes for a quiet and peaceful Sunday!
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  15. #148
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    ((((((callyflower)))))) ~

    Thank you for mentioning purpura. Unfortunately, I think youíre correct. When Nancy is here tomorrow, sheíll examine him, and then weíll inform Dr. K.

    Jim finally took a shower yesterday, and when turning around in the tub, his arm touched against something. When he got out, he was bleeding. His skin is very thin and easily torn.

    I have noticed that some of the spots are fading. The long one on his arm is nearly gone. So, Iím hoping that is a good sign.

    Have you had purpura? If so, what treatment did you receive?

    Itís so nice to hear from you. Iíve missed you. I hope that all is well with you and your family and that your foot is fully recovered. Healing prayers always on the way for you ~

    Love & Light,



    Rose
    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. #149
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    ((((((Donna)))))) ~

    The basement looks wonderful! A victrola? How cool! Do you ever use it? What a very special place your cottage is, with all of its incredible history and memories. Iím so glad you were all able to spend some time there getting it in shape for the summer. Now, to make more fantastic memories!

    THE SHOWER

    Jimís SATS are very good, and he doesnít need O2. In fact, too much O2 can cause respiratory problems. Any kind of exertion causes Jim to lose his breath, sometimes even straightening and pulling himself up in bed. This is particularly true, if heís due for a breathing treatment. So, stairs are out of the question.

    He finally decided that he was ready to take a shower yesterday afternoon, when he was overdue for a breathing treatment. I tried to encourage him to have the treatment first, but he insisted he wanted a shower, or heíd lose his desire to do it.

    When he stepped out of the shower, he was huffing and puffing. I told him to sit on the toilet, while I fetched his inhaler for quick relief. Drying off is also a challenge for Jim, so I did that, while he rested.

    He shaved, but he canít see into the little mirror we have propped up behind the sink faucet. He sits down in a chair in front of the sink. He missed quite a bit. I tried to clean up the rest, but he gets fussy with me when I shave him. Itís not like I donít have experience ~ I shaved Michael and Jon for all of their adult lives.

    He felt good after his shower and shave. I reminded him that he always does feel better. I told him that he needs to do this every couple of days, then it will become less of a chore.

    While Jim shaved, I pulled up his bottom sheet and repositioned his alternating pressure mattress, which is doing a great job, and the pump is so quiet. He had a freshly made bed, after his shower. That feels good too.

    If he would just get out of bed long enough every day, I would do this every day!

    COOKING

    Referring to me as a ďchefĒ is such a lovely, but undeserved, compliment. I am a cook. Thatís it. Nothing complicated or exotic. In our younger years, I tried to learn to cook Indian food, as this is Jimís favorite. It looks so easy on TV cooking shows. UmÖnot so easy for me.

    SLEEP

    I will update about my sleep and recent dreams in Jonathanís thread. But to answer your question, Iím probably sleeping more now than I have in 50 years.

    Yes, Iím exhausted in every possible way to apply that term. Thankfully, Iím being allowed to sleep, because I truly need it to keep functioning. Iím gathering all of it that I can, while Jim is feeling better, because a time may come, when he isnít.

    You are so very dear to me too, Donna, and I thank you so much for everything.

    Our love and prayers to you, Jim, Nick, Natalie, and your family.

    Love & Light,



    Rose
    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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  19. #150
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    ((((((SuzE-Q)))))) ~

    Iím so sorry that you are contending with asthma. Unfortunately, I donít know anything about asthma or treatments for it.

    I asked Jim what the difference is for him between his inhaler and a breathing treatment.

    An inhaler gives immediate relief. A breathing treatment gives relief in about 3 minutes.

    A breathing treatment takes 20 minutes to complete.

    The inhalerís efficacy can last for several hours, as can the breathing treatment. For Jim, the breathing treatment lasts longest.

    Do you have a pulmonologist, SuzE-Q? A respiratory therapist with whom you can consult? Perhaps you should inquire as to other options with them, if you donít feel comfortable or arenít seeing the results you need with your inhaler.

    Headphones for Jim to watch TV probably involves more technology knowledge than we possess. He canít keep his nasal cannula on, so headphones, when he wants to fall asleep, could be problematic. I really do appreciate your suggestion. It would work, if things were different.

    Jim, once the King of Remotes, has trouble with it now. He blames the remote many times. Then I ask if I can try, and I succeed. Either way, Jim is frustrated, because he realizes that heís not connecting the dots.

    This is why I have not rushed into setting up his iPod. I donít think he could handle it. He depends upon me to put on a Blu-Ray/DVD, because he canít remember how to do it.

    Keeping you in my prayers and sending healing energy your way ~

    Love & Light,



    Rose
    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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