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Thread: Jim's Journey

  1. #371
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((callyflower)))))) ~

    Thank you for the link, however, I don't subscribe to the Washington Post, so I can't read the article. I did see the headline, so I got your point.

    As I explained previously, Jim doesn't want to lose Nancy as his nurse, and if we move into Hospice with our agency, she will no longer be Jim's nurse.

    Jim and I are not adverse to Fentanyl patches or morphine. Dr. K is holding that up. He recommended Hospice for Jim on May 31, 2018. Jim was on 3 liters of O2 then. But he got off of O2, and was even able to tolerate 15 rounds of radiation over 3 weeks in October/November.

    Now, Dr. K seems reluctant to prescribe anything beyond T/C for Jim, which is where Nancy's advocacy comes in for pain management, because Dr. K is ignoring me.

    I want a blood draw on 1/31 by Nancy, in plenty of time for our 2/5 appointment for CT/MRI scans. But Dr. K wanted to wait until 2/4 to do the draw. So, Dr. K will receive an email via the health portal tomorrow from me describing why we need the draw on 1/31.

    The scan and draw results should tell us what we need to know about Jim's condition.

    Jim is able to make decisions, so if he says that he doesn't want to lose Nancy by going into hospice, or he doesn't want to go to the hospital, or have the tests, or whatever, that is what I will do for him.

    After Jim overcame his anxiety about getting into John's RAV 4, and John helped him in and out of the car, Jim was fine. He was fine with waiting, fine with getting into the COU bed, fine with everything that transpired with his transfusion.

    With the exception of the 5 days Jim spent in England after his mother passed in 1999, and his various hospital stays from 2016-April 9, 2019, I have been with Jim 24 hours/day every day for over 27 years. Of course, we were separated, when he was at the hospital at night with one of our sons, and I was at home taking care of our other son, and vice versa. But we always stayed in touch by phone.

    So, I feel that I know and understand Jim very well.

    Does Jim have to give up Nancy, who is an outstanding nurse, and our family member, for a stranger Hospice nurse to get Dr. K to agree to changing Jim's pain meds?

    If Jim needs a saline IV, or TPN, which he'd refuse, Nancy can do that. There is very little that a hospice nurse can do that Nancy can't do. Our agency is struggling, and hospice nurses are not abundant. Circumstances often dictate how we proceed.

    Who will be here at 1:45 a.m. to determine what Jim needs? If Jim is in Hospice, do I call a hospice nurse, or do I take care of the situation until I can reach a hospice nurse?

    And who can do anything about Jim's Ascites? No one. He's been asked by several doctors and nurses about having his gut drained, and his answer is the same: what is the point, if the fluid returns in less than 24 hours? It's a lot to go through to be drained for minimal relief in a brief amount of time.

    The fluid in his gut is what prevents him from eating more. He has an appetite, and food tastes good to him. Today, I made lovely falafel pita sandwiches, with my homemade tzatzi sauce. Cucumber, tomato, lettuce, black olives. Chock full so I couldn't add avocado. He scarfed it back and said it was delicious.

    I ordered from Instacart today and got everything he wanted. Veggie hot dogs, veggie beer brats, a Field Roast celebration roast, cheese to go with his Branston pickle sandwiches, veggie deli meats to go with his Picalilly pickle sandwiches. Veggie ground for Shepherd's Pie and tacos. Organic asparagus. He asked for "snack foods" for Super Bowl Sunday.

    He wants to eat and regain weight, but his gut is full of fluid, and he feels full. I'm going to try again with Orgain. I know he wants to drink that too. But he needs encouragement there by me.

    Jim hasn't taken a T/C for 24 hours. He has taken Promethazine with Codeine cough syrup in small doses to quell his cough. Twice during the night, and about an hour ago, he took 3 ml, and the script is for 5 ml.

    I haven't discussed hospice with Jim after seeing your post/link, because we're both very upset about Kobe. We will have that conversation, and then we'll talk with Nancy about it, when she visits for Jim's draw. I'll ask her directly, "What can hospice do for Jim that you can't?"

    I may be relatively new to cancer, but I am not a novice where suffering and death are concerned. Michael was in hospice at the hospital; my godmother was in hospice at home; John's dad came home from an acute care facility with hospice and died 3 days later. My mother, who had a DNR, should have been in hospice, but she was still being treated and in horrid pain. I fought for her to receive hospice care, but my father was in charge, and he was unable to come to grips with losing her.

    I'm not my father.

    Speaking of my father, he died of a heart attack the day after his discharge from 6 weeks in the hospital after surgery to remove a cancerous tumor from his lung. My sister was in charge. She called me from ER (I live about 3 hours away), and told me that he'd been "zapped" five times, still no response. I asked to speak to the physician in charge, and she refused. I told her to "STOP!" My father had a DNR.

    callyflower, I truly appreciate all of the guidance and advice you give to me. I have learned so much from you, and Jim and I are grateful to you for helping us on his journey. I hope and trust that you believe that I know what I'm doing as Jim's caregiver and advocate, and that I will never deny him whatever he needs to be comfortable or receive appropriate care.

    Today, as I was making falafel, Jim asked me to get him the pedal exerciser. I told him that I had held off on buying one to be sure that he could use it. "I need something to exercise my legs, and I will use it. I know I'm weak now, but I want to get stronger. Choose the one you think is best and order it for me, please."

    Jim isn't giving up. He'll know when that time arrives. Meanwhile, we are living every day with hope and love. We know and understand the ultimate outcome, but for now, we're just doing our day to day living. Preparing for blood draw, CT/MRI, Dr. S visit. Right now, that's all we can manage.

    Love & Light,

    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. #372
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    hey rose ,

    i copied and pasted this so you could read it and because i think it might be helpful to a lot of people. i hope you don't mind .

    Health Science
    Waiting too long to use hospice care can make suffering at end-of-life worse

    By Consumer Reports
    December 10, 2017

    Consumer Reports has no financial relationship with any advertisers on this site.

    Many people who are near the end of life wait too long to enter hospice care, according to a recent study published in the Journal of the American Geriatrics Society.

    In hospice care, attempts to cure a disease are usually replaced with treatments solely for pain and suffering, delivered by a specialized team. It usually includes medical and nursing care, counseling and social services, and it can be given at home, in a nursing home or in a hospital facility.

    People who put off hospice care might spend months in and out of hospitals, with their families struggling to attend to them. "At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should," says study author Thomas Michael Gill, a professor of medicine, epidemiology and investigative medicine, and the Humana Foundation professor of geriatric medicine at Yale University. "When folks are referred to hospice only in the last days of their life, it's difficult to have a meaningful benefit."

    For nearly 16 years, Gill and a team of researchers followed 754 people, all age 70 and older when the study began. More than 40 percent of the 562 people who died during the study entered hospice care during the last year of their lives, but the median time spent in hospice was less than two weeks.

    Many of their most debilitating symptoms — including pain, nausea, depression and shortness of breath — decreased substantially only after hospice began. So, many might have been suffering needlessly for months, says Diane Meier, director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York.

    Health crises, emergency-room visits and hospitalizations can become routine toward the end of life, "a very distressing and stressful experience for patients and family members," Meier says. "Remaining in your own home, a familiar place with familiar people, is safer and offers better quality of life."

    What to know about hospice

    Hospice has been covered by Medicare since 1982. Health-care providers have to certify that a patient is terminally ill (with six months or less to live) — which can be difficult to predict, Meier and Gill say. People can leave hospice at any time — because their condition stabilizes, for example, or they want to pursue curative treatments again. Hospice care can also be extended beyond six months.

    "Many people are fearful that if they choose hospice, they won't be able to return to mainstream medicine should they improve or new treatments become available — that's not true," Meier says. "Hospice is not a one-way street."

    And some evidence suggests that hospice patients live just as long as or even longer than similarly ill patients who are not in hospice.

    When is it the right time?

    People with terminal illnesses and their doctors should be having ongoing discussions about goals and priorities, Gill says — ideally long before hospice is broached.

    "Often, patients will say, 'I'm more interested in the quality rather than the quantity of my remaining life,'" he says, and that can help inform future discussions about end-of-life care.

    If you have not discussed hospice with a doctor, for yourself or a loved one, two signs suggest when it might be time to raise the topic, Meier says.

    The first is when someone is having increasing difficulty with self-care, struggling with tasks such as walking, getting out of a chair, bathing, dressing and using the toilet. Hospice care is designed to help with all of those activities. The second is the presence of symptoms such as severe pain, shortness of breath, hopelessness, depression and profound fatigue. In hospice, "most of them can be improved or eliminated," Meier says.

    "It's challenging to have honest discussions with patients and families about death and the dying process," Gill says. "But leaving the conversation until the very end makes it more difficult."

     Copyright 2017, Consumer Reports Inc.
    Last edited by tic chick; 01-27-2020 at 06:14 PM.
    WE ARE BT!
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  5. #373
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you, Jeannie, for posting the article. I'm curious how hospice can "improve or eliminate" "profound fatigue." Dr. S told us that radiation would cause profound fatigue for perhaps as long as a year.

    Jim is up all night usually, or he sleeps for a couple of hours. Then, he sleeps in the morning and afternoon for several hours. I wish it was the reverse, because I can't get anything done during the day, when he's sleeping.

    Like today, for example. I had planned a variety of tasks to complete today, including making a Shepherd's Pie. The pie is time consuming to make, as there is lots of chopping, peeling, etc. I like to get started mid-afternoon with a big meal like this (or spaghetti, or a veggie roast), so that I can do the work in phases and take breaks to sit down to rest my back. Jim is still sleeping now at about 5 p.m., so that meal is not on tonight's menu.

    When Jim woke from his morning nap, he requested a huge meal. When I mentioned that I was making the pie, he decreased the size to a cheese/veggie ham on toast (in broiler) topped with veggie baked beans and a "sloppy egg." He ate it with gusto.

    An hour or so later, he was asleep again. I know he needs this sleep, of course. He has to get it when he can.

    He hasn't had any Codeine for 14 hours, and he wasn't complaining of pain, when he was awake. He took his steroids, but he hasn't taken his Lasix yet. This is problematic, because he'll take it when he wakes up and be up all night again. He should be taking 40 mg a.m. and 20 mg p.m., but he isn't, because he's sleeping during those times. And once he takes Lasix, he is peeing constantly an hour after the dose.

    Dr. K replied to my email, agreeing that Jim could have his blood draw on 1/31. He also said that there was a technical problem with loading Jim's blood test results onto the portal, so he is sending us a copy by snail mail.

    While Jim was sleeping, I ordered a bamboo folding room divider/screen to place in front of our patio door. The morning sun blazes in, blinding Jim. He wears sunglasses until the sun moves out of our direct path.

    I also ordered a pedal exerciser for Jim, which pleased him today. He is anxious to do some exercises to build up his muscle tone and increase his circulation. He wants to use it for his legs and arms. I give him many kudos for wanting to do this. Of course, being awake is a prerequisite.


    To honor Jonathan's love for Kobe, I have been placing more Kobe items throughout Jon's room. If I bring out all of Jon's Kobe things, his room would be overflowing. So, I'm choosing special things, like Jon's Number 8 cap, (Kobe's first number on the Lakers; he later changed his number to 24).

    I am compelled to watch on line tributes to Kobe from his friends and teammates, and I weep with all of them.

    We watched Kobe mature into a caring, generous young man, with unbelievable dedication, persistence, and giving his all to everything during and after his basketball career.

    He adored his daughters, and he remarked that his wife, Vanessa, wanted to have a boy, but he was proud to be a "girls' dad." He became a champion for girls and women in sports. His daughter, Gigi, who perished with him in the crash, insisted that she would carry on his legacy on the court. She certainly had the talent and her father's work ethic to accomplish anything.

    Yesterday, the hosts of The View showed a clip of Kobe from a previous appearance on the show a few years ago. Kobe was seated on a sofa with two brothers, who have epilepsy, and their parents. The boys were involved in a charity to support epilepsy research, and Kobe was there to support them and their charity. Kobe said, "We have to take care of each other."

    You can all imagine how this pulled on my heartstrings.

    As more information comes in about the crash, my sadness increases. This was an avoidable accident. The LA Sheriff's Office grounded their helicopters on Sunday morning, because the fog was thick. Kobe's helicopter should have been grounded too. So what if you're late to the game? Use your cell phone to tell the other team you've been delayed by fog. Play the game after the fog lifts, or reschedule the game.

    The helicopter pilot, with 19 years of experience, chose to fly with visual rather than instrument flying rules. (VFR and IFR) Once in the dense fog, he requested help from the tower to track the helicopter, but the tower replied that it was flying too low to track. The pilot elevated to 2,500 ft, but the helicopter suddenly fell downward and hit the foothills of Calabasas at 184 mph.

    The fog eventually lifted, as it always does, thus giving light to the first responders to put out the fire and begin searching for survivors.

    My heart just keeps breaking as I think about Vanessa, her daughters, her parents, Kobe's parents, and everyone, who was close to him and loved him.

    And for the families, friends, loved ones of the other wonderful people on board that helicopter.

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

    Love & Light,

    Last edited by Earth Mother 2 Angels; 01-30-2020 at 04:13 PM.
    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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  7. #374
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    Rose, I hope all is well... Praying all the upcoming tests including todays blood draw goes smoothly.

    The news of Kobe's death was such a shock and just so very sad. I agree the more we heard about it the more difficult it was. So many lives lost in what could have maybe been prevented had they waited it out.
    Always in my thoughts and prayers.
    Mary Grace

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  9. #375
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you so much for your prayers. We truly appreciate your care and concern for us.

    Being quite familiar with California fog, I feel strongly that Kobe's helicopter should have been grounded. The NTSB is leaning toward the fog layer as the catalyst for the crash, with the pilot becoming disoriented.


    Coughing is problematic for Jim, which I asked Nancy to address today. She listened to his lungs, and while they were somewhat diminished (but not unusually so), she did not hear wheezing, rales, or any other unusual sounds. She ruled out bronchitis, pneumonia, particularly because he has no signs of infection.

    I asked her if she thinks the fluid from Ascites is the problem, and she said, "Yes." Another reason why his heart rate is in the upper 80s, as with Jonathan, the fluid is pressing on his lungs and heart. I'm trying to get him back to the 40 mg Lasix a.m. and 20 mg p.m., but he is resistant. "I'm peeing enough." No, not when your gut is full of fluid. His gut is still 41", so that is unchanged.

    The blood draw went smoothly, as always, because Nancy is so proficient.

    She also checked the wounds on his bum cheeks. A new one occurred yesterday, which I immediately treated with Calmoseptine and an Optifoam pad. In one day, the new wound had improved greatly.

    We think one of the causes for this could be the briefs he's been wearing for incontinence. He really isn't incontinent, as he gets up to go to the toilet or uses his bedside urinal. The roughness of the brief rubbed on his delicate skin causing breakdown. So, we switched to his regular underwear, and he is so much more comfortable.

    We suspect that much of Jim's rib pain is the result of his coughing. When he isn't coughing, he doesn't feel significant pain. He is still taking no more than 2 T/C in 24 hours.

    We have to wait now for the blood work results, and of course, we're anxious to know his hemoglobin, praying that the transfusion worked.

    That's the latest news. We're hoping for a relaxing weekend and enjoying the Super Bowl.

    We send our love and prayers to you, Mary Grace, and Kathleen and your beautiful family, and to all of our friends. Thank you for your love and support.

    Love & Light,

    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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  11. #376
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    Hi dear Rose.
    Jim and I are in Cat Island and settled peacefully. We've skyped with Nick and he is doing great - visits from an old high school helper and also from his uncle (my brother in law) to watch hockey. He went out on Saturday for a haircut and hot-towel shave which he loved. And of course last night the Super Bowl, so he's happy. How are you my dear? I really mean you. I wonder if your back is sore, if you are on the edge of tears. When I imagine you at home, I think of you trying and trying to keep going and keep looking for signs of discomfort or for ways of getting things done. I hope today was a good day.

    I went to the orphanage yesterday (children's home) and met all my little friends again. One of older kids has written a wonderful play which is to be performed on Feb. 14 and so I'm helping with direction and costumes, etc. It is so much - the title is "True Love Never Dies" and it's about a young couple who grow up and get married on the island. It's delightful.

    I send you lots of love and prayers that Jim manages an orgain shake and has no pain. xoxo 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:

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  13. #377
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Donna ~

    So good to hear from you! I'm glad that you and Jim are settled and that Nick is enjoying his life with those, who love and care for him. It's great that he is able to get out and about too.

    I hope that you will take a video of the play. I'd love to see it. I remember the video of you with the children (last year?), and they are so sweet and adorable. How wonderful for them to have you there to help guide their performances.


    Jim's last full meal was Shepherd's Pie on 1/29. After that meal, he began having frequent BMs, normal, not diarrhea, along with copious urination. To/from the bathroom continuously, which wore him out. Although he was releasing all of that, he still felt full.

    He had no appetite and could barely eat a few bites throughout the days/evenings. He was relying on apple juice and tea as his hydration, because the bottled water tastes awful to him. We go through this occasionally with the water, but this time he just didn’t want to drink it at all.

    Because he was peeing so much, he believed he could skip his Lasix. This is a mistake, of course, but I couldn’t persuade him to take it.

    Meanwhile, he was weak, losing weight, and felt like crud.

    The BMs slowed down, but Jim still was worried about eating more than his gut could handle. By yesterday morning, he was feeling a little better in his gut, so he ate a bowl of oatmeal and some applesauce. That went down well and settled nicely.

    Conference Time

    I told Jim that I wasn’t going to watch him wither away by making poor choices.

    I explained to him that he HAS to take Lasix to get rid of the excess fluid in his gut. It’s not optional. It’s necessary. No matter how much he is peeing, it isn’t enough to make a dent in the fluid without some help.

    I reminded him what Jon’s PT said, when he diagnosed Jon with “just water” and not lymphedema on his last visit 2 years ago. I asked the PT what we could do for Jon, and he answered, “Lasix.” Jon couldn’t take Lasix, because it triggered seizures, even with Potassium. Jim can take it, and it has helped him.

    On hydration, I reminded him when Jon’s urine was rust, and his liver function was over the top. Our family GP told me to “give him water, lots of it.” I always gave the boys juice with no added sugar. When they asked for a drink, they said, “Juice please.” What was absent from their diet, and much needed to process their seizure meds and help their bowels, was H20.

    To make it more palatable to Jon and Michael, I put a tablespoon or two of juice in the cup, then added the water. Like a watered down cocktail. They accepted it, drank it and called it “juice.”

    For Jim, I tried adding fresh squeezed lemon. That helped for a few hours, but he still wanted apple juice and tea. Next, I tried fresh squeezed orange in his water. Same outcome. Today, he asked if he could do as we did for our boys, put apple juice in with the water. He said, “I understand now how important it is to drink water, after you reminded me of Jonathan.” So that’s what we’re trying tonight.

    I also suggested that Jim start wearing his dentures to eat, because without them, he sucks in more air, which causes gas.

    He complained of heartburn, weakness in his legs, dizzy upon sitting up, a “blinding headache,” and I responded, “This is malnutrition and not enough hydration. We have to do something about this right now. Seriously. Right. Now.”

    Jim agreed, and he felt much better today, after we implemented these changes. I have been saying the same things to him for days, and he finally realized that I’m right. Imagine that?! I’ve only been a caregiver for 50+ years.


    Yesterday, we had a conversation about Jim's scans on Wednesday. Of course, he is weak from not eating properly (and cold, when the heater is at 80 degrees, and he has 3 blankets and a heating pad on).

    Jim said that he couldn't manage getting into/out of John's car, or walking down the driveway. He suggested an ambulance to take him to the hospital. I reminded him that he'd be on/off that gurney several times, and would be sitting in a chair waiting for his scans, not laying in a bed or recliner like his transfusion. He would have to climb up on and down from the scan table. When the tests were done, he would have to wait in a chair for the ambulance EMTs to arrive, then get up on the gurney and be unloaded by them onto his bed at home.

    "Honestly, honey, can you handle all of that?" I asked.

    "No. I can't."

    After that, Jim even suggested that maybe the EMTs could put him in a wheelchair rather than on a gurney to transport him. I explained, based upon my countless experiences with and in ambulances, that they aren't a wheelchair transport.

    Jim wants the scans to know what is going on inside of him, but he realizes that he just isn't physically able to tolerate all that is entailed in having them.

    We were expecting him to feel better and stronger after the transfusion, but the opposite has been the case.

    So, I called radiology and cancelled his scans appointment, and the woman to whom I spoke was so kind and understanding. She said she hoped Jim would feel better, and we'd be able to reschedule soon.

    I texted John, so that he can plan his day for Wednesday without concern for transporting Jim. I sent an email to Dr. K explaining what's been going on with Jim and that we cancelled the scans.

    I will call radiation oncology to discuss whether Dr. S wants to see Jim on 2/10, without scan results. I'm not sure at this moment, if Jim would be up to that visit, as simple as it is. I pray that he will be much stronger by then. But, I'm not a psychic or a miracle worker.

    Jim's vitals are excellent, and we're waiting on Dr. K to post his last blood draw results on 1/31. I received the snail mail copy of Jim's 1/18 results, and they were fine, except for his low Hemoglobin. We pray that is elevated now after the transfusion.

    Getting Closer

    These past few days have been frightening for both of us. I feared that Jim was failing, and I was helpless, if he didn’t listen to me and follow my guidance. I knew from experience that I had to reiterate everything until it all sank in for him.

    I joined him on his nest, and we snuggled and talked for a few hours. Tears, laughter, memories, and facing what awaits.

    Jim isn’t afraid of dying, because he knows he’ll be reunited with Jonathan and Michael and many other loved ones in Bliss. What worries him is leaving me. “I don’t want you to be alone. To go through the rest of your life alone.”

    Of course, I will be alone without him, and no one could replace our intimate and powerful connection and relationship. I will be alone in grieving for him, and for Jonathan and Michael. No one understands my grief the way Jim does.

    I remember Jim telling me that, on the morning Jonathan passed, one of the police officers was concerned about me, and he said to Jim, “She’s very distraught. Keep an eye on her.”

    Jim replied, “I always keep an eye on her. Always. But she is strong, and she will be all right.”

    I assured Jim that I will not be alone, because John made a commitment to me on Day One that he would be here for me and for Jim forever. I know John will take special care of me. I also have Nancy, who will always be by my side. And John’s entire family, who are just waiting to do something for us.

    Then, Jim committed to me that he would keep an eye on me, once he joins Jonathan and Michael. “The three of us will take care of you. I promise.”

    “Then, I won’t be alone. I’ll have my treasures, my angels, with me always.”


    I went to bed and slept for a few hours, then I checked on Jim several times. Naturally, I have a fear of waking up to find him gone. I stand beside him and count his respirations, while he sleeps.

    Jim woke up feeling better and ready to start over. He ate a big bowl of steel cut oatmeal and a tub of applesauce. This evening, he wants to tackle a fully loaded baked potato and possibly half of a veggie hot dog.

    He took Lasix and is drinking water. He is cheerful and upbeat.

    Nancy visited for a signature to recertify Jim’s home health nursing care, due every 60 days. Jim was sleeping, while Nancy and I chatted in the kitchen.

    I described all that had been occurring, and I asked her, “Is this cancer or Ascites? Or something else?”

    “Ascites,” she replied, and her expression changed. “it’s so common.”

    “Am I doing the right things for him? What else can I do?”

    “Yes, you are. Just keep doing what you’re doing and get him to eat whatever he wants and drink lots of water, take his Lasix. All that fluid is pressing on his organs. It’s painful. Up til now, he hasn’t had this discomfort, but now it’s time to make sure he takes Lasix and drinks water.”

    HOW AM I?

    Thank you so much for asking, Donna, but I don’t know quite how to respond.

    Will I be “strong and all right” after Jim joins Jonathan and Michael? I don’t know. My reason to be strong then will be to get everything in order with our home, our will, our legacy. That will be a huge project.

    In between doing all of that, there will be those times, and I know them well, when grief will overcome me. I won’t have Jim’s arms around me, or his loving, soothing, comforting wisdom and understanding to help me through a difficult passage. But, I know that I will feel Jim, Jonathan and Michael near me to give me the strength I need to do whatever needs to be done.

    And when all that needs to be done is done, I will welcome my opportunity to join Jim, Jonathan and Michael.

    Thank you, Donna, and all of our dear friends, for your love, prayers, and enveloping us in your thoughts and sending us healing energy. Jim asked me to thank you and tell you how much he appreciates your prayers and support. We are not alone. We will never be truly alone.

    Love & Light,

    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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  15. #378
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    Rose, all I can say is I am sorry things have gotten so hard for you and for Jim. We will continue with the prayers.

    So much of what Jim says to you are the things my husband said to me as far as not minding dying so much, that it was leaving me. Then he would talk about how I would be alone because I didn't have children or sisters. Then he would tell me I was too young to stay alone for the rest of my life.

    So, to some extent I can understand. Obviously, I cannot understand loosing a child. But loosing a much loved husband I can relate to. You will make it if that happens.
    There will be times when you might think you will not, but you will. You are pre-grieving just as I did. I can tell. You are in my thoughts.
    Last edited by Virginia; 02-04-2020 at 09:28 PM.

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  17. #379
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you for your prayers and for understanding what I'm experiencing now. I'm so very sorry you lost your beloved husband. He clearly adored you, as I know you adored him. I am pre-grieving, and I have been for some time. It's just more intense now. It is familiar territory to me now.

    Jim had a difficult night after taking Lasix for the first time in 2 days. He was on the toilet so frequently that his legs and bum were aching. When he urinated, he felt a stinging, which he's felt in the past occasionally. He passed a trace of blood, which he has also happened occasionally in the past. The stinging subsided.

    Fearing dehydration, I convinced Jim to drink more water. I also gave him Gatorade.

    I gave him a T/C and his steroids, and he fell asleep for a couple of hours. He was comfortable and had no pain, when he woke up. More fluids, and then he agreed to eat some applesauce, which I fed him. Eventually, he finished the tub, after he slept for another 2 hours.

    His SATS dropped to 86, so I started him on 1.5 liters of O2. He he didn't need a breathing treatment until late afternoon, upon returning to bed after going to the bathroom. His SATS were 96. We dropped the O2 to 1.0 liters, and he's maintaining SATS of 95-96. We'll do a trial wean later with hope that he won't need to continue on O2.

    He just requested and ate (on his own) a sloppy egg and 1/2 of a large baked potato, which I sauteed in ghee and a touch of butter. He didn't think he needed to put in his dentures, but I talked him into it, and he obliged. One word: "gas." Trying to mitigate that by having his dentures in after 2 weeks of not wearing them.

    His temperature has been normal all day. He's alert, talking with a strong voice, and we've watched two movies today, "The Caine Mutiny," and "The Apartment." It's Oscars Week on TMC.

    We also watched The Kansas City Chiefs Super Bowl victory parade this morning. I think half of Missouri turned out on the streets of Kansas City! School was cancelled for today, and I would imagine most of the businesses closed down with that massive crowd. It was so joyful and uplifting. No violence. Lots of music, dancing, cheering, and partying! That was good for us to see today.

    I spent all day in fervent prayer for Divine Guidance in caring for Jim. This morning I began preparing to take him to the ER, but I wanted to give him time to see if we could rectify his issues. As the day progressed, each thing we did resulted in improvement. When he said yes to applesauce this morning, I was so happy. When he told me that later he wanted fried potatoes and a sloppy egg, I was ecstatic. When he ate the entire plate of food, I was jubilant.

    When he held my hand and looked up at me this afternoon, thanking me for my care, reiterating that he doesn't know what he would do without me, and his lament that I have spent my entire life caregiving, and "it isn't fair to you," I cried.

    He said, "You've been shut in this house for so long taking care of Michael, Jonathan, and now me. It's not fair."

    "I haven't been shut in. Or 'tethered' to the house as our Toenail Team once said to me. This is my purpose in life. It's never a burden to me to care for you or our boys. It is a joy and a blessing. And, we weren't always sick. We had many good, wonderful, glorious moments together, all 4 of us. Even when we were isolated here in our home. We made the most of every moment we had, including in ICU. I haven't missed anything. I have gained everything from you and our boys. Everything. Unconditional, perfect love. Whatever is 'out there' can't compare to that magnificent gift."

    Jim squeezed my hand, "And that, my darling, is why I love you so much."

    This morning, as I was assessing Jim and working out what to do for him, he stopped me, and said, "You look so pretty this morning." I teased him and asked if he was delirious. He smiled, "No, I'm not. In this light, you just look so very pretty."

    The other day, I was joking about trying to find out who Jane Fonda's plastic surgeon is, and Jim said, "You're beautiful the way you are. Every nook and cranny, every gray hair, you earned. You are distinguished."

    Through the eyes of love, Jim sees me. And I see him.

    Jim said that he still wants the CT scan, at least. And he now wants to try having his gut drained again. So, we are working toward those goals.

    Thank you, Virginia, and all of our friends here, for your thoughts, love, prayers, and positive, healing energy for us. We love you, and we pray for you and your loved ones. We are so grateful for your continuing support.

    Love & Light,

    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. #380
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    Hi Rose,

    I'm glad Jim is doing better. Is it possible to sign Jim up for a wheelchair transport service like we have in my city if Jim ever needs it? Lots of cancer patients use it here. Would you consider getting Jim a catheter if getting up to pee just becomes too painful despite risks of infection and inactivity??
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films!

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