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Thread: Jim Has A Fever. ER Bound

  1. #81
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    Rose? How are you doing? How is Jim? Thinking of you. 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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  3. #82
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    Rose, Thinking of you and Jim always and praying for peace and healing of mind and body. It was good to read some positive news. So glad the bath worked out there's nothing like some hot water and soap to feel refreshed. Hope all is well with you and Jim.
    Mary Grace

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  5. #83
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    Question Maintaining, But What Is Next?

    ((((((Hugs to All)))))) ~

    Thank you, Donna and Mary Grace for checking in on us and for your love and prayers for us.

    THE GOOD STUFF

    Sats are in the mid 90s; heart rate is normal; temp is normal; BP is excellent. Urine output prolific. Normal BMs. Appetite very good. Wound is not weeping; Optifoam is intact. He slept a good amount this morning.

    NOT AS GOOD STUFF

    Coughing. He needs his breathing treatments every 4 hours. Out of breath from just sitting up on the side of the bed. Weakness. I want him to get more exercise, to sit in Jon's recliner, but he has to sleep, when he can. He's often coughing during the night, and when it settles down, he can sleep.

    HUMOR

    Some days, like yesterday, it's hard to find anything humorous, but we try, because we know that laughter, like tears, releases stress hormones.

    We have some jokes for brief changing. Sometimes I remind Jim, "Don't forget to tip your waitress," when I bring his meal to him.

    Today, while he was sitting on the toilet, I straightened up his bed. It looks like a tornado went through our living room, but only struck the bed. He called me to tell me he was ready to leave.

    When I arrived, I put on gloves to clean him. "I've done that." Then I handed him a wipe for his hands. "I've done that."

    So, I turned off the O2 concentrator, unplugged it, pulled it out to make room for Jim to lead the way to bed, as I pushed the concentrator behind him. Half way there, I said to him, "So, now I'm just your Uber driver, eh?"

    TOMORROW

    Nancy will visit for a port blood draw and to check Jim's wound. I'm concerned about a further drop in Jim's WBC, because he is so weak. I'm also worried about his tumor growing without any treatment for so long. But that can only be determined via a CAT scan or MRI.

    Today, I said to Jim, "At some point, we're going to need to go in to see Dr. K. I don't know how we're going to do that, but we'll probably have to do it."

    Jim groaned, "I know."

    Jim is tethered to the O2 concentrator, and I haven't been able to drop him down below 3 liters. He's usually at 3.5 to 4. I don't think that he could tolerate the commotion involved in getting ready to go to the doctor, getting in/out of John's car, even if he used a wheelchair once there, and had his O2 tank. It takes everything out of him just to walk to the bathroom, have a bowel movement, and walk back to the bed.

    Jim's gut is still huge, even with his good urine and BM output.

    We need to discuss this with Nancy tomorrow. We are maintaining well at home, but what's waiting around the corner? What is next? Where do we go from here? Will it get better, worse, or stay the same?

    Thank you all so much for your love, prayers, and enduring friendship. We love you and pray for you and your loved ones every day.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  7. #84
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    Rose, Thank you for the update. I'm always happy to see even a small positive part to your post. I'm very much a glass half full kind of gal. I suppose it's a bit of a coping mechanism. Sometimes I think my older daughter thinks I'm "delusional" LOL! We were in the pouring rain Sunday running from the car and I turned to her and said "I think it's supposed to clear up" I think she almost tripped laughing at me... I am a very big believer in laughter making our lives easier happier and more tolerable. I love watching standup comedians even. My son took me to see a comedian at a local live theater for mother's day. My face hurt from laughing.
    Always praying for more positive news!
    Mary Grace

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  9. #85
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you for your prayers. It is a challenge for me to find humor and a glass half full right now. I am depressed, and Jim is running me ragged.

    He's been to the toilet 3 times today, which means I'm the Uber driver and his personal attendant. The concentrator is low to the ground, so I have to bend over to push it.

    I had to remake his bed, as the tornado struck again, and his overlay was sliding off. In the process, I knocked over a glass of Gatorade on his tray. All over the floor, more bending and stooping.

    He goes through at least 5 briefs a day. Trash accumulates quickly. And pee in a brief is heavy. Our trash bin is twice as heavy now as it was before Jon passed, with all of the trash he generated.

    Throughout the day/evening, I am bringing Jim various beverages, snacks, meals, and whatever strikes his fancy.

    I try to fit in housekeeping and laundry. Some days, I barely have time to clean up the kitchen from one meal to the next.

    I'm very worried about Jim's cognition. This morning, I told him that I was taking my walk, and he told me to enjoy it. Twenty minutes later, when I got home, he watched me sit down to take off my shoes, and he said, "Are you going for your walk now?"

    Nancy visits on Tuesday and Fridays, but almost every day, Jim asks me what time Nancy is coming over. I have to answer, "It's Monday. Nancy will be here tomorrow, Tuesday." I told him last night and this morning several times that Nancy would be here at 2 p.m. Still, Jim asked me at 11:00 if Nancy would be here at 12:30.

    It's difficult to keep track of time, when you are not active, laying in bed watching old movies on TV, and you have no responsibilities.

    Of course, I have to prepare for Nancy's visit, as I always did with Jonathan. All of the port draw supplies are laid out on the dining room table. All of the wound care supplies are laid out on the side table. Mask and gown on the back of the living room chair. Gloves and other supplies are on the coffee table.

    I assist Nancy, handing her things, opening stuff that she can't, because she's wearing sterile gloves, taking things from her hands, when she's finished using them. I'm on my feet the entire time she's here.

    Today, after we finished, and she was washing her hands in the kitchen, I asked her, "What's next?"

    She said that Jim's fluid filled belly, which she believes is Ascites, may get worse, or he could get an infection, or he could need it drained, or ... ?

    For now, she said, he is being well maintained by me at home, with her nursing skills definitely in play too.

    She also told us that it's perfectly fine for Jim to be transported to an appointment with Dr. K on a gurney by our ambulance company. He'll have O2 then. If that's the only way Jim can get to see Dr.K, then that's what we'll have to do.

    Just thinking about doing this wears me out.

    So, I need to write to Dr. K with an update, ask him if he agrees that Jim has Ascites and what his prognosis is, what should be done about his gut, and whether he's up to having Jim come in to see him via ambulance on a gurney with O2 going.

    Dollars to donuts, he tells me to take him to ER.

    But how do we justify that to Medicare, when Jim's vitals are excellent, his urine and bowel output is outstanding, his appetite is good, he's well hydrated, and he has no signs of infection?

    We'll see what today's blood work results are and go from there.

    Jim said to Nancy today, "I tell Rose all of the time that I have the two best nurses in the world."

    I nudged Jim, "I'm not a nurse, honey."

    "Yes you are," he said looking up at Nancy.

    She nodded in agreement.

    I'm not a nurse. I'm a caregiver, who performs certain nursing tasks. I am in awe of nurses, and I respect them too much to be called a nurse. Nursing has to be the hardest job in the world.

    This is where we are today.

    Tomorrow morning, after Jim is all settled, I will go out to pick up his meds, all of which are running quite low, and for which I had to speak directly to the pharmacist to get refills, as well as run a couple of other errands. I asked Jim today, if he will be okay for 40 minutes without me. He said that he'd take a nap, while I'm gone.

    I'm always preparing for "WHAT'S NEXT?"

    Thank you all so much for your love, prayers, and continuing support and friendship. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  11. #86
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    Hi Rose,

    If you haven’t already tried this and I haven’t mentioned it before, can you write down what Jim needs to remember? Or even better, have Jim write down dates etc in his own handwriting? I grew up around people with memory issues who wrote every single thing, and got into the habit of writing EVERYTHING in a notepad to remember. UBER driver joke cracked me up HAHAHA! Good one! My prayers always for good news on Jim's health.
    Last edited by funnylegs4; 05-14-2019 at 07:30 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #87
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    Rose, if Dr. K wants Jim to come in couldn't he write the diagnosis for it, which in my thinking is the cancer. Even if he has Ascites wouldn't that be secondary to the malignancy that he has.

    I hope you get some rest tonight.
    Virginia

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  15. #88
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    Default Memory, Medicare, and Meanwhile

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you for the suggestion. I have tried getting Jim to write notes to help him remember. He forgets to write notes. He forgets where the pad and pen are.

    Writing down, "Rose went for a walk," may not help the cognitive problem of asking me upon my return after 20 minutes, if I'm going for a walk.

    Or, as in today, while Jim was sleeping, I ate lunch. When he woke up, I told him that I'd had my lunch and asked him if he wanted his lunch. He wasn't sure whether he was hungry. About 10 minutes later, he said to me, "If you want to have lunch now with me, I'll have lunch now." I reminded him that I had already had my lunch. "Oh, yeah, that's right," he replied.

    If we had any space in the living room, specifically the coffee table, where he could see it, I'd have a small calendar for him to check every day. This afternoon, Jim asked me, "Is it Saturday today?"

    "No, honey. Yesterday, Nancy was here for your blood draw."

    "Oh, that's right. And the gardeners were here. So, that was Tuesday. Today is Wednesday."

    Yet, earlier today, when I was searching for his water soluble lubricant for his nose (cannulas irritate his nostrils), he remembered where it was. Speaking of cannulas, he frequently cleans his nose, which requires removing the cannula. Then he forgets to put the cannula back in his nostrils, and his SATS drop to the mid-80s. Then, he's coughing and struggling, and I check him. "How long has the cannula been around your neck (on your chin, on your forehead)?"

    When I expressed concern that his retention is poor, he protested, "My brain is fine. I just forget things sometimes."

    Part of the problem is that he spends all of his time in bed, has trouble sleeping, because he coughs so much at night (sleep deprivation), and he doesn't use his brain. I do everything for him, so his brain isn't taxed. He used to read often, usually Consumer Reports, AARP publications, and catalogs. He has several books, but he can't concentrate long enough to enjoy them.

    Like every other body part, if we don't use our brains, they atrophy.

    He's had a lot of drugs, scans with contrast, a brain neoplasm and radiation to his brain. So, his brain has taken a beating. I should be working on brain exercises for him. I'll add that to my list of things to do.

    Thank you for your prayers and positive energy.

    Virginia ~

    My concern about Medicare paying for Jim to go to ER and being admitted correlates to Medicare's refusal to allow Jim to remain in the Cancer Unit at the hospital after 40 hours of treatment and testing.

    Jim was in dire condition, when we got to ER, with severe dehydration. His admittance was justifiable, as were all of the tests and procedures, as well as Neupogen and platelets.

    Medicare wouldn't pay for another 2 days in the excellent Cancer Unit at the hospital, but they were willing to pay for the facility for a week or more.

    At least now, Jim is stable with excellent vitals, output, appetite, etc. Medicare/UnitedHealth might argue that everything Jim needs could be done as an out patient. Of course, that means ambulance costs, so it might even out in the end.

    Jim's 3 day stay in the Cancer Unit in January cost Medicare a little over $8k. That is just for the hospital, not the tests, not the radiologists, who read the tests, not the dozens of doctors, therapists, and specialists, who walk into his room for 5 minutes, not his blood work. I'm sure that the hospital charged more than that, but that's what Medicare paid.

    Jim is a Stage IV lung cancer patient, but every time we refill the Promethazine with Codeine cough syrup, our Part D denies it. Why? They don't pay for cold and flu medicines. I could fight this, if I had one extra ounce of energy and more hours in the day. I don't, so we pay $40 for cough syrup.

    Over the weekend, there was a question as to whether Medicare/UH would pay for the albuteral inhalation medicine. They did before, but for this refill, we had to reinvent the wheel. Medicare finally authorized payment today. When I picked up the meds today, the pharmacist said she had to fill out a form with the following information: 1. what date did he start using the inhalation? 2. Is the neubulizer bought, rented, or borrowed? 3. Manufacturer name of nebulizer, and model/model number.

    I had to call her, when I got home, because, golly gee, I haven't memorized all of that information!

    Dr. K doubled Jim's potassium dose, so now he's run out, and it's too early for Medicare to pay for a refill. The pharmacist called Dr. K's office on Monday. She had to give me two days of pills to tide us over. And now, I have to go back to the pharmacy this week to get it. I already made two trips, because when I arrived this morning, they didn't have the albuteral ready. So I ran my other errands and came back.

    I was gone for 50 minutes, 10 minutes longer than I'd told Jim, but I called him to let him know what was going on with his meds. He was fine without me, thankfully.

    Medicare will not pay for home health port draw kits. So, we have to pay for the kits, so that Nancy can draw Jim's blood once a week. She brings all of the extra supplies that she has on hand to save us money.

    In a way, it feels like Medicare is saying to Jim: "Either get better or die." This "in between stuff" and this "home health care stuff" is costing $$.

    What I fear most and am trying to prevent is Jim's condition suddenly going South. A raging fever, unbearable pain, utter weakness. He has gallstones, diverticulitus, liver polyps, a whole gamut of issues, which have been at bay. Cancer is front and center. But now, with the Ascites, things have taken a different direction.

    I'm being as proactive as I can be, and now I need to involve Dr. K in that battle. Let's prevent the worst from happening by being on top of everything. I need more information than I have now to keep on top of everything on my end as his caregiver.

    MEANWHILE ...

    In my search about Ascites, I realized that I haven't been monitoring Jim's sodium intake. His sodium is always in the low normal range. But with Ascites, and a diuretic, we need to reduce salt intake.

    I told Jim last night that we'll have to eliminate his favorite potato chips, and he was fine with that. For canned soup, only half a serving a day. He was fine with that. We're going to reduce our dependency on frozen and canned foods, and I'm going to start cooking healthy meals using our new steamer. He was fine with that too.

    All of our vegetables have gone over, so I've salvaged what I could for steamed baby yukon potatoes, rainbow carrots, a parsnip, frozen peas (no salt). I'll add the last decent sweet onion, mushrooms, garlic, and cover with melted unsalted butter and salt-free seasonings.

    Tomorrow, I will order from Instacart from our favorite store for fresh organic vegetables. I've cleaned out the fridge, and we will start fresh.

    I shouldn't have needed to research Ascites to realize that Jim's sodium intake was excessive. He also gets sodium in Gatorade. Thankfully, I did, so I can take corrective action now.

    I only wish, as does Jim, that he could eat salad and fresh veggies, as well as blueberries and strawberries. With his declining WBC, we can't take a chance.

    Thank you all so much for listening and loving and praying for us. We love you and pray for you and your loved ones every day.

    Abundant Blessing Upon You All ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  17. #89
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you for the suggestion. I have tried getting Jim to write notes to help him remember. He forgets to write notes. He forgets where the pad and pen are.

    Writing down, "Rose went for a walk," may not help the cognitive problem of asking me upon my return after 20 minutes, if I'm going for a walk.

    Or, as in today, while Jim was sleeping, I ate lunch. When he woke up, I told him that I'd had my lunch and asked him if he wanted his lunch. He wasn't sure whether he was hungry. About 10 minutes later, he said to me, "If you want to have lunch now with me, I'll have lunch now." I reminded him that I had already had my lunch. "Oh, yeah, that's right," he replied.

    If we had any space in the living room, specifically the coffee table, where he could see it, I'd have a small calendar for him to check every day. This afternoon, Jim asked me, "Is it Saturday today?"

    "No, honey. Yesterday, Nancy was here for your blood draw."

    "Oh, that's right. And the gardeners were here. So, that was Tuesday. Today is Wednesday."

    Yet, earlier today, when I was searching for his water soluble lubricant for his nose (cannulas irritate his nostrils), he remembered where it was. Speaking of cannulas, he frequently cleans his nose, which requires removing the cannula. Then he forgets to put the cannula back in his nostrils, and his SATS drop to the mid-80s. Then, he's coughing and struggling, and I check him. "How long has the cannula been around your neck (on your chin, on your forehead)?"

    When I expressed concern that his retention is poor, he protested, "My brain is fine. I just forget things sometimes."

    Part of the problem is that he spends all of his time in bed, has trouble sleeping, because he coughs so much at night (sleep deprivation), and he doesn't use his brain. I do everything for him, so his brain isn't taxed. He used to read often, usually Consumer Reports, AARP publications, and catalogs. He has several books, but he can't concentrate long enough to enjoy them.

    Like every other body part, if we don't use our brains, they atrophy.

    He's had a lot of drugs, scans with contrast, a brain neoplasm and radiation to his brain. So, his brain has taken a beating. I should be working on brain exercises for him. I'll add that to my list of things to do.

    Thank you for your prayers and positive energy.

    Virginia ~

    My concern about Medicare paying for Jim to go to ER and being admitted correlates to Medicare's refusal to allow Jim to remain in the Cancer Unit at the hospital after 40 hours of treatment and testing.

    Jim was in dire condition, when we got to ER, with severe dehydration. His admittance was justifiable, as were all of the tests and procedures, as well as Neupogen and platelets.

    Medicare wouldn't pay for another 2 days in the excellent Cancer Unit at the hospital, but they were willing to pay for the facility for a week or more.

    At least now, Jim is stable with excellent vitals, output, appetite, etc. Medicare/UnitedHealth might argue that everything Jim needs could be done as an out patient. Of course, that means ambulance costs, so it might even out in the end.

    Jim's 3 day stay in the Cancer Unit in January cost Medicare a little over $8k. That is just for the hospital, not the tests, not the radiologists, who read the tests, not the dozens of doctors, therapists, and specialists, who walk into his room for 5 minutes, not his blood work. I'm sure that the hospital charged more than that, but that's what Medicare paid.

    Jim is a Stage IV lung cancer patient, but every time we refill the Promethazine with Codeine cough syrup, our Part D denies it. Why? They don't pay for cold and flu medicines. I could fight this, if I had one extra ounce of energy and more hours in the day. I don't, so we pay $40 for cough syrup.

    Over the weekend, there was a question as to whether Medicare/UH would pay for the albuteral inhalation medicine. They did before, but for this refill, we had to reinvent the wheel. Medicare finally authorized payment today. When I picked up the meds today, the pharmacist said she had to fill out a form with the following information: 1. what date did he start using the inhalation? 2. Is the neubulizer bought, rented, or borrowed? 3. Manufacturer name of nebulizer, and model/model number.

    I had to call her, when I got home, because, golly gee, I haven't memorized all of that information!

    Dr. K doubled Jim's potassium dose, so now he's run out, and it's too early for Medicare to pay for a refill. The pharmacist called Dr. K's office on Monday. She had to give me two days of pills to tide us over. And now, I have to go back to the pharmacy this week to get it. I already made two trips, because when I arrived this morning, they didn't have the albuteral ready. So I ran my other errands and came back.

    I was gone for 50 minutes, 10 minutes longer than I'd told Jim, but I called him to let him know what was going on with his meds. He was fine without me, thankfully.

    Medicare will not pay for home health port draw kits. So, we have to pay for the kits, so that Nancy can draw Jim's blood once a week. She brings all of the extra supplies that she has on hand to save us money.

    In a way, it feels like Medicare is saying to Jim: "Either get better or die." This "in between stuff" and this "home health care stuff" is costing $$.

    What I fear most and am trying to prevent is Jim's condition suddenly going South. A raging fever, unbearable pain, utter weakness. He has gallstones, diverticulitus, liver polyps, a whole gamut of issues, which have been at bay. Cancer is front and center. But now, with the Ascites, things have taken a different direction.

    I'm being as proactive as I can be, and now I need to involve Dr. K in that battle. Let's prevent the worst from happening by being on top of everything. I need more information than I have now to keep on top of everything on my end as his caregiver.

    MEANWHILE ...

    In my search about Ascites, I realized that I haven't been monitoring Jim's sodium intake. His sodium is always in the low normal range. But with Ascites, and a diuretic, we need to reduce salt intake.

    I told Jim last night that we'll have to eliminate his favorite potato chips, and he was fine with that. For canned soup, only half a serving a day. He was fine with that. We're going to reduce our dependency on frozen and canned foods, and I'm going to start cooking healthy meals using our new steamer. He was fine with that too.

    All of our vegetables have gone over, so I've salvaged what I could for steamed baby yukon potatoes, rainbow carrots, a parsnip, frozen peas (no salt). I'll add the last decent sweet onion, mushrooms, garlic, and cover with melted unsalted butter and salt-free seasonings.

    Tomorrow, I will order from Instacart from our favorite store for fresh organic vegetables. I've cleaned out the fridge, and we will start fresh.

    I shouldn't have needed to research Ascites to realize that Jim's sodium intake was excessive. He also gets sodium in Gatorade. Thankfully, I did, so I can take corrective action now.

    I only wish, as does Jim, that he could eat salad and fresh veggies, as well as blueberries and strawberries. With his declining WBC, we can't take a chance.

    Thank you all so much for listening and loving and praying for us. We love you and pray for you and your loved ones every day.

    Abundant Blessing Upon You All ~

    Love & Light,



    Rose
    Rose, You're welcome!
    Can you get him a digital recorder to record notes? Can you get him books on tape as mental stimulation?
    RE: Salt. I reduced my salt intake after my fainting incident. Get salt free cans if you need cans. Maybe make homemade chips like my family does? Just slice thin potatoes and bake.
    This
    "Either get better or die." This "in between stuff" and this "home health care stuff" is costing $$.
    is how most disabled people feel when dealing with insurance or inaccessible environments I think. I feel like an $$$ sign to certain people. Now there's a hashtag "CostOfBeingDisabled" on twitter.
    Last edited by funnylegs4; 05-15-2019 at 08:00 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #90
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    Default Remembering

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I appreciate your suggestions. Jim can't figure out how to work our new TV/Cable remote, so I doubt that a digital notepad would be of use for him.

    MEMORY

    He will say something to me, while I'm in the kitchen with the water running and the TV blaring. I ask him to wait a minute so I can turn off the water, stop what I'm doing, go out to the living room and hear him. I'll say something like, "Ok, what were you saying, dear?"

    That quickly, he'll answer, "I can't remember now." He does this many times a day.

    He watched me eating lunch today, as he wasn't hungry. He even commented on the mac & cheese as my favorite. Two hours later, when he was ready for lunch, he asked me if I was going to have lunch with him. I reminded him that he sat with me, while I ate earlier.

    Dr. K's office called. He wants Jim to come in for an appointment in 2 weeks. When I told Jim about the call, I mentioned going via ambulance. He said he'd never considered that and doesn't want to do it. He's afraid Dr. K will put him in the hospital or the facility.

    I reminded him that we discussed going to Dr. K's office via ambulance with Nancy on Tuesday. He doesn't remember. I told him that on Tuesday, he said that he'd be fine with that option. I also told him that Dr. K doesn't have the power to "commit" Jim to the facility. As long as I'm here, that will never happen.

    He has trouble focusing, concentrating ... he'll start talking about something, and he winds up lost, not sure what his point was. Or he rambles and mumbles, and I'm not sure what he's trying to say. He's not blithering, but he's not coherent entirely. This isn't the same as his dehydration hallucinations, nowhere near it. This is chronic, and it could be even dementia at this point.

    I found him asleep grasping a glass of Gatorade today. I just sat in the chair beside him waiting for him to cough, or move so I could grab the glass and avoid a large spill on his bed. Laundry, linen change, etc. He coughed, and I pried the glass out of his hand.

    While I was putting out the trash bins for tomorrow's pick up, Jim needed to go to the toilet. I came back into the house to find him not in his bed, and in a tangled mess of concentrator cord and cannula tubing. I was alarmed and pointed out to him the hazard of the tube and cord wrapped around each other.

    It's just non stop worry and stress for me, and he's oblivious.

    FOOD/COOKING

    I used to make lovely soups, but I do not have the time, energy or strength to cook now. It has to be super simple and easy. Reduced sodium soups are still too salty, and 1/2 of a regular can is equivalent to 1 can of low sodium. Jim will notice the change in taste. He can have 1/2 can of soup, as long as we watch the sodium from other foods.

    His lunch yesterday was a lovely, fluffy 2 egg mushroom omelet with a touch of shredded cheese and fresh parsley, two slices of organic toast with coconut spread and French strawberry jelly.

    Last night's dinner of steamed veggies with an herb butter sauce and steamed garlic was a huge hit with Jim. No salt in that meal. He had 2 Gardein "fish" fillets, so that was his salt intake, plus Gatorade for the day.

    We have leftovers for this evening. With my Instacart order today, I have a load of fresh veggie options for us. I know that Jim will enjoy a lightly curried asparagus, fresh green beans almondine, beet, avocado, and hydroponic lettuce salad with a Dijon dressing. And a big surprise of spaghetti with Field Roast sausage and a low sodium pasta sauce.

    I just have to be able to maintain the energy level to do all of this cooking, standing on my feet, cleaning up the kitchen, etc.

    I have to rearrange our kitchen cupboards, because everything I need is out of reach, and the grabbers can only do so much given the shape, weight and size of what I'm trying to grab. I'm afraid to climb on a chair to access things, and I fear falling or glass crashing down on the counter, if I try to stand on my tiptoes to get something.

    I'm going to enlist John's help here. If he can just get things off the shelves and put them in my reach, that would be a blessing. Sadly, I have all of Jonathan's meds on the shelves, which need to be discarded. That will make more room for what I use now for Jim. It's just another painful reminder of Jon's physical absence.

    And so it goes ...

    IF TOMORROW NEVER COMES

    As I was charting today, Jim called to me, "Have I told you that I love you today?"

    "Yes, honey, numerous times. Thank you. I love you."

    "You're the only reason that I'm still here. After all of this. I'm not in great shape, but I'm better than I was, because you take such good care of me. I see how hard it is for you. I see all of your pain. I just want you to know that I love you with all of my heart and soul."

    At our wedding, Jim marched down the aisle first, carrying a single red rose for me. We were all very big Garth Brooks fans then, and Jim chose "If Tomorrow Never Comes" as his song for me.

    https://www.youtube.com/watch?v=QDBJR8C7luk

    Jim has memory problems, but he remembers his vow to me on our wedding day: to let me know every single day that I'm his only one. Love is everlasting.

    Thank you, funnylegs4, and everyone for your love, prayers, advice, suggestions, guidance, support, understanding, compassion, and friendship. You and your loved ones are in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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