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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, (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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  3. #372
    Distinguished Community Member tic chick's Avatar
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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.
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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,


    I continue thinking, "If only ..."
    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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