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Thread: Jim's Journey

  1. #281
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    Hi Rose,
    Just wondering how you are doing. We are fine - had a shopping trip yesterday to bookshops and Starbucks with Nick. He has grown a goatee! Sending much love and thinking of you.
    Donna xox
    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. #282
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Donna ~

    We have had an assortment of hectic things happening in the past several days, which is why I havenít posted.

    HOUSEHOLD PROBLEMS

    I found water under our washer, thinking it was leaking.

    I also discovered that we have a serious mold problem under our kitchen sink, thanks to a leaking faucet.

    I called our plumber (wonderful family owned company) to look at the mold problem. He showed me how the faucet leaked back into the tubing, which caused the mold. He said, ďIím not going to put my head under there.Ē He referred me to a water restoration company.

    As a courtesy, he checked the water under the washer. ďThatís not your washer. Thatís your old hose bibbs (faucets) and hoses. Iíll replace those today, so you can get back to washing.Ē He saw my mounds of laundry everywhere and knew it was important to get this fixed fast. He didnít charge labor, only for parts.

    Actually, we did well to have the same hose bibbs and hoses for 42 years without a problem. Iím so grateful that we donít have to buy a new washer.

    Iím taking everything out of the cabinet under the sink and throwing it out in plastic bags. Now those supplies will be in a box in Michaelís room temporarily. I ordered a stainless steel kitchen trash bin, which will also go into Michaelís room.

    I just want to get through the holidays, before we start the mold removal process. Iím keeping the door closed, per the plumberís suggestion, and the faucet is hanging down when we use it, so it canít leak back into the tube. Iím just praying that they wonít want to tear apart our entire kitchen.

    JIMíS UPDATE

    Very fatigued, frustrated, thinking about a million things, wanting his old life back, all the way to his youth in England, angry that he has no options left, struggling with appetite due to Ascites and digestive issues.

    He went 1 1/2 days without a BM and was beginning to panic. He wasnít eating, because he didnít feel he had room. I was finally able to get him to eat leftover Shepherdís Pie, and he hasnít stopped pooping since. I told him that his body is changing, so this may be its new process, to shut down for a day or so and then take off like gangbusters. Now that his bowels are moving, he is eating better. He has lost weight.

    Todayís Appointment with Dr. K

    Jim felt wobbly today, but he managed to take a shower and shave and dress himself.

    John dropped us off in plenty of time for our 11:30 appointment. I got Jim the last available wheelchair, which should be thrown in the trash, because it is worn and torn. Jim said the seat was like sitting on the floor. I need to issue a complaint about that at some point.

    Jim decided to take the long way, and it is a long way, to the elevators to get to the Oncology unit, which is also a long way from the elevators with lots of turns and cross traffic. I am maneuvering this wicked w/c, pushing Jim and using the handle brake. My arthritic hands and back were not happy.

    We walked past the rad onc department and recognized the young lady, who we comforted on our second radiation appointment. She looked good and was smiling and talking to the nutritionist. We said hello to her and she smiled back and waved.

    At the elevator, we ran into none other than Dr. S! And the dreaded Dr. D, as well as another tech or doctor. Because Jim cannot tolerate Dr. D, I wanted to wait for the next elevator, but they insisted that we join them. Awkward in so many ways: I had to move Jim around in the w/c so one of the passengers could exit on the 2nd floor. And being in close quarters with Dr. D. And Dr. S. We wished them all a happy holiday, when we exited. They wished us the same. Weird. And, just, why? Why did that happen?

    The Waiting

    We checked in right at 11:30. We sat in the waiting room watching the room TV with the depressing local news, and then Maury whatís his name with the screaming guests and chair throwing came on. The folks in the waiting room requested a channel change, and we ended up with a reality show about Southern men, who track down snakes in the swamps. Just charming. So festive. UGH!

    Jim was finally taken to the exam room about 12:45. I kept texting John to let him know we were still waiting, and he was fine with that, as he was visiting his niece, who spent the night in the hospital across the street and was being released today, with all tests being normal, thankfully.

    Finally, Dr. K arrived, smiling, kind, honest.

    Ascites

    He looked at Jimís gut and said, ďWell, thatís not too bad.Ē

    I joked, ďWeíre expecting quadruplets!Ē

    He chuckled. ďParacentesis is an option, but as you say, its effects are temporary. And doing that too frequently could cause problems for you. I recommend that you try weighing yourself everyday at the same time, then if you increase weight by more than 5 pounds, you add another 20 mg of Lasix to your day in the afternoon. Take 40 mg in the morning, 20 in the afternoon. Do that and see if you get rid of more water/weight. Also measure your gut everyday.Ē

    We have been weighing and measuring, but in the past few days, we have not.

    He also said, ďI donít know whether the Ascites is from your liver or your cancer, or both."

    Treatment Options

    ďYouíre not a candidate for chemo, because of your blood levels. And by the way, your blood levels this last time were really good. I mean, not good enough for you to do chemo or immuno again, but at this point, they are actually excellent, for you. I canít in good conscience give you Opdivo again, although it worked great for you, until it gave you all of these problems you have now.Ē

    There is another drug he mentioned, but it isnít very effective without a chemo chaser, and he didnít feel that it would benefit Jim, and the risks were too great for him.

    Radiation

    Dr. K said that it takes at least 8 weeks for radiation to do its job in reducing the tumor size. So he asked if Jim would be willing to have a CT scan in early January, before Jimís appointment with Dr. S, the rad onc. He said the scan would give Dr. S a clearer idea of how well the treatment is going. He will also be able to see other places, where radiation might be needed, if Jim wanted to have it.

    Jim agreed to have the scan.

    Brain MRI

    Dr. K asked Jim if he could manage having a brain MRI at the same time as his CT scan. ďWe havenít looked at your brain for quite awhile.Ē

    Jim doesnít have headaches. His vision is blurry, but he also has an untreated cataract in his right eye, and the cataract and surgery to stop floaters in his left eye is wearing off. He gets dizzy, when he sits up too fast. He felt wobbly today, but he managed fairly well getting in and out of the car and w/c. He also says he feels thick headed sometimes, but heís taking codeine periodically, and he isnít sleeping for long intervals due to going to the bathroom constantly. I also forgot to ask him if heíd taken his THC before bed last night.

    Nonetheless, Jim agreed to have the MRI. ďWe might as well know as not know, right, honey?Ē

    ďItís your call, and I support your decisions,Ē I replied. ďDo you think you can manage the claustrophobia?Ē

    ďIf I canít, Iíll tell Mark, and heíll stop.Ē (Mark is the CT/MRI fellow, who we often see in the corridors, especially when Jim had his radiation.)

    Maybe Mark will allow me to be with Jim. We can ask. Mark is just a lovely, kind man. He cried when we told him about Jonathanís passing. Iíll never forget Mark saying, ďThis must be so difficult and painful for both of you. I know he was your everything. Jim told me all about him and you and your family. My heart breaks for you both.Ē

    DNR And Other Things to Consider

    Dr. K asked Jim if he wanted to have CPR, intubation, or defib. Jim said, ďNo. I donít. Whatís the point? Iím dying. When itís time, itís time.Ē Jim looked at me, his eyes welling, ďIs that okay with you, honey?Ē

    I looked at Jim, then Dr. K and his sad eyes, ďI donít know whether Iíd say that Iím good with it. But I accept it. I accept whatever you choose Jim.Ē

    Dr. K nodded understandingly. ďIf you are unable to make a decision, Rose will make it for you. Youíre both on the same page. I will note this in your chart, if thatís okay with you.Ē

    ďIt is,Ē Jim and I said in unison.

    Then, the tears flowed for Jim, and I came over to him to comfort him, my arms around him, kissing his beanie (on his head). ďItís okay, honey.Ē

    ďI donít want to leave this little lady. Sheís been through too much. But, I know reality, and weíll just have to find a way to cope with it,Ē Jim said to Dr. K.

    Dr. K looked so sad too. How many times has he seen this with his patients and family? It must be such a difficult job to be an oncologist, when so many of your patients only make it so far.

    In fact, I just remembered that I spoke on the phone to Dr. K the afternoon of Jonís passing, and I told him the we had lost Jon. His response was shock and tremendous compassion for us. So, he understands that weíve been through quite a lot.

    Christmas

    I donít have a single decoration up. I did order personalized ornaments for Jonathan and Michael for the tree in Michaelís room. I havenít been able to stop the madness long enough to open the package and cope with this new tradition for Christmas, and always, because the gold wrought iron tree will be up until Iím gone. Lit up, with all of their special ornaments on it.

    Weíve had our fair share of difficult Christmas and holiday seasons through the years. Many Christmases and holidays weíve been in ICU with Jonathan or Michael. For 17 years now, weíve missed Michaelís physical presence for Christmas, and now itís our first Christmas without Jonathan.

    I want and need to make this the best Christmas for Jim and for me. Itís just getting the initiative and energy to do that, which I am lacking.

    John will visit us on Christmas Eve, which is his favorite day, he said, ďbecause its about the anticipation of Christmas Day.Ē He loves his inner child.

    That basically sums it all up for now. I hope that I havenít worn you out! Itís a lot. I know.

    We are thinking of all of you during the holiday season, praying for your health, happiness, well being, and joy. Thank you all for loving, praying for, and supporting us. We love you, and we pray for you and your loved ones.

    Blessings to All ~

    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.


  4. #283
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    Dear Rose, I feel so sad for you and for Jim. The holidays will be so sad without Jon and so much unknown looming for Jim. I don't know, maybe this is an opportunity to remember your beautiful sons and to feel all the grief that you couldn't when Jon died. Maybe Christmas this year is meant to be a time of sadness for you this year mixed with the bittersweet joy of remembering the love and happy times you all had together. And maybe decorations will look different this year without a tree, but a plate or bowl for your personalized decorations instead. And candles for remembering and as you say, love and light. Oh, how I wish I was there to go through with you whatever it is that you are feeling - to be able to support you as a friend. Thinking of you now and every day my dear.
    Donna xo
    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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  6. #284
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Donna ~

    We have had an assortment of hectic things happening in the past several days, which is why I havenít posted.

    HOUSEHOLD PROBLEMS

    I found water under our washer, thinking it was leaking.

    I also discovered that we have a serious mold problem under our kitchen sink, thanks to a leaking faucet.

    I called our plumber (wonderful family owned company) to look at the mold problem. He showed me how the faucet leaked back into the tubing, which caused the mold. He said, ďIím not going to put my head under there.Ē He referred me to a water restoration company.

    As a courtesy, he checked the water under the washer. ďThatís not your washer. Thatís your old hose bibbs (faucets) and hoses. Iíll replace those today, so you can get back to washing.Ē He saw my mounds of laundry everywhere and knew it was important to get this fixed fast. He didnít charge labor, only for parts.

    Actually, we did well to have the same hose bibbs and hoses for 42 years without a problem. Iím so grateful that we donít have to buy a new washer.

    Iím taking everything out of the cabinet under the sink and throwing it out in plastic bags. Now those supplies will be in a box in Michaelís room temporarily. I ordered a stainless steel kitchen trash bin, which will also go into Michaelís room.

    I just want to get through the holidays, before we start the mold removal process. Iím keeping the door closed, per the plumberís suggestion, and the faucet is hanging down when we use it, so it canít leak back into the tube. Iím just praying that they wonít want to tear apart our entire kitchen.

    JIMíS UPDATE

    Very fatigued, frustrated, thinking about a million things, wanting his old life back, all the way to his youth in England, angry that he has no options left, struggling with appetite due to Ascites and digestive issues.

    He went 1 1/2 days without a BM and was beginning to panic. He wasnít eating, because he didnít feel he had room. I was finally able to get him to eat leftover Shepherdís Pie, and he hasnít stopped pooping since. I told him that his body is changing, so this may be its new process, to shut down for a day or so and then take off like gangbusters. Now that his bowels are moving, he is eating better. He has lost weight.

    Todayís Appointment with Dr. K

    Jim felt wobbly today, but he managed to take a shower and shave and dress himself.

    John dropped us off in plenty of time for our 11:30 appointment. I got Jim the last available wheelchair, which should be thrown in the trash, because it is worn and torn. Jim said the seat was like sitting on the floor. I need to issue a complaint about that at some point.

    Jim decided to take the long way, and it is a long way, to the elevators to get to the Oncology unit, which is also a long way from the elevators with lots of turns and cross traffic. I am maneuvering this wicked w/c, pushing Jim and using the handle brake. My arthritic hands and back were not happy.

    We walked past the rad onc department and recognized the young lady, who we comforted on our second radiation appointment. She looked good and was smiling and talking to the nutritionist. We said hello to her and she smiled back and waved.

    At the elevator, we ran into none other than Dr. S! And the dreaded Dr. D, as well as another tech or doctor. Because Jim cannot tolerate Dr. D, I wanted to wait for the next elevator, but they insisted that we join them. Awkward in so many ways: I had to move Jim around in the w/c so one of the passengers could exit on the 2nd floor. And being in close quarters with Dr. D. And Dr. S. We wished them all a happy holiday, when we exited. They wished us the same. Weird. And, just, why? Why did that happen?

    The Waiting

    We checked in right at 11:30. We sat in the waiting room watching the room TV with the depressing local news, and then Maury whatís his name with the screaming guests and chair throwing came on. The folks in the waiting room requested a channel change, and we ended up with a reality show about Southern men, who track down snakes in the swamps. Just charming. So festive. UGH!

    Jim was finally taken to the exam room about 12:45. I kept texting John to let him know we were still waiting, and he was fine with that, as he was visiting his niece, who spent the night in the hospital across the street and was being released today, with all tests being normal, thankfully.

    Finally, Dr. K arrived, smiling, kind, honest.

    Ascites

    He looked at Jimís gut and said, ďWell, thatís not too bad.Ē

    I joked, ďWeíre expecting quadruplets!Ē

    He chuckled. ďParacentesis is an option, but as you say, its effects are temporary. And doing that too frequently could cause problems for you. I recommend that you try weighing yourself everyday at the same time, then if you increase weight by more than 5 pounds, you add another 20 mg of Lasix to your day in the afternoon. Take 40 mg in the morning, 20 in the afternoon. Do that and see if you get rid of more water/weight. Also measure your gut everyday.Ē

    We have been weighing and measuring, but in the past few days, we have not.

    He also said, ďI donít know whether the Ascites is from your liver or your cancer, or both."

    Treatment Options

    ďYouíre not a candidate for chemo, because of your blood levels. And by the way, your blood levels this last time were really good. I mean, not good enough for you to do chemo or immuno again, but at this point, they are actually excellent, for you. I canít in good conscience give you Opdivo again, although it worked great for you, until it gave you all of these problems you have now.Ē

    There is another drug he mentioned, but it isnít very effective without a chemo chaser, and he didnít feel that it would benefit Jim, and the risks were too great for him.

    Radiation

    Dr. K said that it takes at least 8 weeks for radiation to do its job in reducing the tumor size. So he asked if Jim would be willing to have a CT scan in early January, before Jimís appointment with Dr. S, the rad onc. He said the scan would give Dr. S a clearer idea of how well the treatment is going. He will also be able to see other places, where radiation might be needed, if Jim wanted to have it.

    Jim agreed to have the scan.

    Brain MRI

    Dr. K asked Jim if he could manage having a brain MRI at the same time as his CT scan. ďWe havenít looked at your brain for quite awhile.Ē

    Jim doesnít have headaches. His vision is blurry, but he also has an untreated cataract in his right eye, and the cataract and surgery to stop floaters in his left eye is wearing off. He gets dizzy, when he sits up too fast. He felt wobbly today, but he managed fairly well getting in and out of the car and w/c. He also says he feels thick headed sometimes, but heís taking codeine periodically, and he isnít sleeping for long intervals due to going to the bathroom constantly. I also forgot to ask him if heíd taken his THC before bed last night.

    Nonetheless, Jim agreed to have the MRI. ďWe might as well know as not know, right, honey?Ē

    ďItís your call, and I support your decisions,Ē I replied. ďDo you think you can manage the claustrophobia?Ē

    ďIf I canít, Iíll tell Mark, and heíll stop.Ē (Mark is the CT/MRI fellow, who we often see in the corridors, especially when Jim had his radiation.)

    Maybe Mark will allow me to be with Jim. We can ask. Mark is just a lovely, kind man. He cried when we told him about Jonathanís passing. Iíll never forget Mark saying, ďThis must be so difficult and painful for both of you. I know he was your everything. Jim told me all about him and you and your family. My heart breaks for you both.Ē

    DNR And Other Things to Consider

    Dr. K asked Jim if he wanted to have CPR, intubation, or defib. Jim said, ďNo. I donít. Whatís the point? Iím dying. When itís time, itís time.Ē Jim looked at me, his eyes welling, ďIs that okay with you, honey?Ē

    I looked at Jim, then Dr. K and his sad eyes, ďI donít know whether Iíd say that Iím good with it. But I accept it. I accept whatever you choose Jim.Ē

    Dr. K nodded understandingly. ďIf you are unable to make a decision, Rose will make it for you. Youíre both on the same page. I will note this in your chart, if thatís okay with you.Ē

    ďIt is,Ē Jim and I said in unison.

    Then, the tears flowed for Jim, and I came over to him to comfort him, my arms around him, kissing his beanie (on his head). ďItís okay, honey.Ē

    ďI donít want to leave this little lady. Sheís been through too much. But, I know reality, and weíll just have to find a way to cope with it,Ē Jim said to Dr. K.

    Dr. K looked so sad too. How many times has he seen this with his patients and family? It must be such a difficult job to be an oncologist, when so many of your patients only make it so far.

    In fact, I just remembered that I spoke on the phone to Dr. K the afternoon of Jonís passing, and I told him the we had lost Jon. His response was shock and tremendous compassion for us. So, he understands that weíve been through quite a lot.

    Christmas

    I donít have a single decoration up. I did order personalized ornaments for Jonathan and Michael for the tree in Michaelís room. I havenít been able to stop the madness long enough to open the package and cope with this new tradition for Christmas, and always, because the gold wrought iron tree will be up until Iím gone. Lit up, with all of their special ornaments on it.

    Weíve had our fair share of difficult Christmas and holiday seasons through the years. Many Christmases and holidays weíve been in ICU with Jonathan or Michael. For 17 years now, weíve missed Michaelís physical presence for Christmas, and now itís our first Christmas without Jonathan.

    I want and need to make this the best Christmas for Jim and for me. Itís just getting the initiative and energy to do that, which I am lacking.

    John will visit us on Christmas Eve, which is his favorite day, he said, ďbecause its about the anticipation of Christmas Day.Ē He loves his inner child.

    That basically sums it all up for now. I hope that I havenít worn you out! Itís a lot. I know.

    We are thinking of all of you during the holiday season, praying for your health, happiness, well being, and joy. Thank you all for loving, praying for, and supporting us. We love you, and we pray for you and your loved ones.

    Blessings to All ~

    Love & Light,



    Rose
    Hi Rose,

    Iím so SO sorry the DNR talk has to happen at all, but since it has to happen Iím glad you are addressing it early enough that Jimís wishes are made clear. You wouldnít want an outside medical professional to make those decisions for you and end up making the wrong one. I hope you donít mind me asking this: I remember a few posts/threads ago when you discussed DNR before and you said that Jim would not receive life saving measures for a cancer related respiratory or cardiac arrest but that he would receive medical help if another medical emergency like a regular heart attack or accident were to happen?? Is this still the case? Can Jim remove the DNR if he wants to later? If itís too painful to answer you donít have to answer this. The dizziness could be from the brain radiation that could have changed his brain wiring. His blood pressure could change causing dizziness. Perhaps the extra fluid contributes to dizziness somehow. I'm so sorry he's dizzy! Merry Christmas to all of you! You will find a way to celebrate Christmas in a way that is best right now. Thanks so much for the update!
    Last edited by funnylegs4; 12-19-2019 at 11:09 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  8. #285
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    Smile

    :) Merry Christmas to both of you and to your personal angels. Everyday you are in my thoughts and prayers. Love, Jeanie :)

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  10. #286
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    ((((((Donna)))))) ~

    You have supported me for nearly 20 years in so many incredible ways. Although we are thousands of physical miles apart, I feel you close to me at all times. I cannot thank you enough.

    Indeed, it is a very sad time for Jim and me. Jonathan's physical absence is felt profoundly every day. But, Christmas is especially painful.

    My issues with decorating revolve mostly around my memory of Jonathan on Michael's floor, surrounded by Christmas decorations in the room on the day he passed. It has been 8 months and 7 days, and that memory is still fresh and raw for me.

    Logistically, Michael's room is filling up with stuff from our kitchen, with the mold situation, and with items for Jim. I need to organize everything and rearrange, but that will take me days, and I'm not up to doing it. It's difficult to maneuver around his room to decorate.

    The gold wrought iron tree in Michael's room remains up all year. I take down the Christmas oriented decorations and leave up all of the angel and memory decorations for the remainder of the year. The personalized glass decorations I purchased for Jonathan and Michael will remain on the tree year round.

    Yesterday, the medical offices were all decorated with trees, garland, poinsettias. Jim looked around and said, "This is the first year we haven't had a poinsettia." Back in the days, when Jim did the shopping, he used to bring home gorgeous giant poinsettias from Costco. They looked so pretty on our front patio.

    When I suggested that I could order some, Jim said, "No, it's just something else for you to water. You have far too much to do as it is."

    We'll get through this like we do every day ~ take it as it comes and deal with whatever it is. We are shedding a lot of tears and talking about everything important to us.

    A couple of days prior to yesterday's appointment Jim suggested that in the Spring, we could rent an RV and travel for a couple of weeks. I told him that sounded like fun, knowing that it is so unrealistic. He realizes this too now. And that makes me even sadder.

    I will prepare a lovely Christmas dinner, as I did for Thanksgiving, and I'm on a search now for a nice red wine, as Jim has requested this. I don't drink red wine, so I'm at a loss. I found a list of 1,838 different red wines at a local wine store on Instacart, loaded it up on the iPad, but Jim is too tired to look at it. I can't recall the last time he had red wine, but it's been at least a decade.

    All I can do is try to give him what he wants, keep him comfortable, love him and be available no matter what he needs or wants.

    Thank you so much for your love and enduring friendship, Donna. We send all of our love to you, Jim, Nick, Natalie, Daisy, and your entire wonderful family. Our prayers are with you for a blessed Christmas. We love 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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  12. #287
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Thank you so much for wishing us a Merry Christmas, and we wish the same for you and your loved ones.

    Jim could always change his mind, but he stands pretty firm right now that he doesn't want to be revived or have treatment for anything. He is concerned about prolonging his life and being completely debilitated, thereby creating more stress for me. He is very concerned about me, far more than he is for himself. He is at peace with dying, and he believes/knows that he will be reunited with Jonathan and Michael. He just doesn't want to leave me.

    However, should something occur, which might need ER attention, we'll deal with it at the time. When he had blood in his urine and black stools, he was worried and thought he might end up at the ER. He didn't want that, but he asked me to talk with Nancy and get advice. Both of those problems are resolved for now.

    The short answer is: I don't know. We usually deal with things as they happen.

    Jim's dizziness has subsided. I feel that it correlates to his lack of sleep, and getting up too fast, which does alter blood pressure. His brain radiation was 2 years ago in 2017, but it is possible, I suppose that he could have damage from that showing up now. However, he's also not been eating enough, and he's taking Lasix. So, there are many factors to consider. This is why Jim agreed to try to have a brain MRI, to make sure that there is nothing untoward going on there.

    Thank you for your love, prayers, and support, and we wish you and your family a blessed Christmas.

    ((((((Jeanie)))))) ~

    Thank you so much for your love and prayers. We think of you and pray for you everyday too, and for Andy and Jim, and all of your loved ones. You are such a strong and amazing woman, and we admire you tremendously. Please take good care of yourself. We love you and wish you a blessed Christmas ~

    Love & Light,



    Rose

    J
    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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  14. #288
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Thank you so much for wishing us a Merry Christmas, and we wish the same for you and your loved ones.

    Jim could always change his mind, but he stands pretty firm right now that he doesn't want to be revived or have treatment for anything. He is concerned about prolonging his life and being completely debilitated, thereby creating more stress for me. He is very concerned about me, far more than he is for himself. He is at peace with dying, and he believes/knows that he will be reunited with Jonathan and Michael. He just doesn't want to leave me.

    However, should something occur, which might need ER attention, we'll deal with it at the time. When he had blood in his urine and black stools, he was worried and thought he might end up at the ER. He didn't want that, but he asked me to talk with Nancy and get advice. Both of those problems are resolved for now.

    The short answer is: I don't know. We usually deal with things as they happen.

    Jim's dizziness has subsided. I feel that it correlates to his lack of sleep, and getting up too fast, which does alter blood pressure. His brain radiation was 2 years ago in 2017, but it is possible, I suppose that he could have damage from that showing up now. However, he's also not been eating enough, and he's taking Lasix. So, there are many factors to consider. This is why Jim agreed to try to have a brain MRI, to make sure that there is nothing untoward going on there.

    Thank you for your love, prayers, and support, and we wish you and your family a blessed Christmas.

    ((((((Jeanie)))))) ~

    Thank you so much for your love and prayers. We think of you and pray for you everyday too, and for Andy and Jim, and all of your loved ones. You are such a strong and amazing woman, and we admire you tremendously. Please take good care of yourself. We love you and wish you a blessed Christmas ~

    Love & Light,



    Rose

    J
    You’re welcome! Thanks Rose! For once I’m pretty on track with my gifting schedule for Christmas. I usually send gifts late LOL. Thanks so much for answering my question. I was just curious. Just make sure that if Jim does indeed want treatment that he is not denied the treatment because of the DNR as that may cause further pain and suffering etc. Be super clear to medical professionals about what Jim will or will not tolerate. I’m very sad but I fully respect Jim’s choice and where he is coming from. Good point. The dizziness could be fatigue, lowered blood sugar from not eating, and dehydration too. So glad he is not dizzy at the moment.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  16. #289
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Congratulations on being on track with your gifting!

    I waited too late, and now the few gifts I ordered for John's family won't be delivered until Christmas Eve. John will visit that afternoon, so I hope they arrive early so I can get them ready. I mega downsized this year just to avoid stress, but I have stress anyway, because their gifts are arriving late!

    As I was discussing Christmas with John on the way to Dr. K's appointment, John said, "Everyone knows your situation and understands, Rose. You always do too much for us anyway."

    Well, they are family to us, and they have done so much for us for the last 24 years. I don't spend a lot of money, and there were times when I made gifts (beaded jewelry for the ladies/girls, floral arrangements, food). But I try to find something meaningful and useful.

    John continued, "The best gift you can give to us is for you and Jim to be healthy and happy together."

    As for the DNR, Jim can revoke that if he chooses to do so. If he's unable to make that decision, I will be the one to make it for him, and I am clear on what he wants and does not want. For example, if he gets pneumonia, I'll ask him if he wants to be treated for it or to just let it take its course. If he cannot respond, I will let it take its course. If he's unable to respond or make a decision, the time will have come for him to join Jonathan and Michael.

    The first thing the paramedics asked me is whether Jonathan had a DNR. I responded, "No, we make that decision as we come to it." Then he asked me if I wanted them to try to resuscitate Jon, and I said yes. All of this, while I was in shock and hysterical. I knew that Jonathan was gone, but I couldn't accept that tragedy. I wanted him back.

    JIM'S UPDATE

    The dizziness has subsided, so it's likely related to low blood sugar or hunger/poor nutrition.

    I am pleased to report that Jim ate veggie baked beans on toast with 1 1/2 eggs (I don't eat yolks ~ intestinal issues for years with them), and one Amy's breakfast sausage. He loved it, and he said it was "perfect."

    Then he napped for a couple of hours, and when he woke up, he wanted a Dave's Boomin' Berries bagel. His gums are sore from wearing his dentures, after not wearing them for awhile. I found a denture liner repair kit, which we'll try tomorrow, with the hope that it solves the problem.

    In lieu of the TV tray/table, which we've been using at Jim's bedside, he requested today that I bring in Jonathan's over the bed "hospital-type" tray for him to use. I wasn't sure whether we had enough room for it, and I worried he might trip or bump into it, when getting up or coming back.

    I had been stacking Jim's sweat pants and bathroom linens on the tray in Jon's room. I'm running out of space. I traded Jon's tray for Jim's tray, and the linens and pants are fine on it. Jim is quite happy with the Jon's tray.

    The first thing he wanted was the iPad, so that he could "look things up."

    "You don't know how to 'look things up,' honey. This isn't a computer. Actually it is, but not the same as our Mac."

    I got him hooked up to the Instacart wine store, so he could look at their vast red wine offerings. I showed him repeatedly how to do everything. "Stay in this lane, when you scroll," "tapping twice doesn't really do anything," "here's how you 'go back'," "here's how you type in what you want in Google," etc.

    "I've got it! Thank you! I'll be fine." He assured me.

    "Okay. I'll leave you to it." And a few minutes later, he was not getting it. When I suggested we try again, he said, "that's okay."

    I had it all set up for him, and he had to do was scroll through 1,838 different types of red wine! Yes, that is how many they carry, according to their page on Instacart. They don't offer a filter to narrow it down, such as wines from Western France, Portugal, or Germany, which are Jim's preferences. No California wines? Nope. He is European, and he knows what he wants. And what he wants is wine and food reminding him of his past.

    Scheduling the CT/Brain Scans

    Radiology called and left a message today about scheduling Jim's appointment for his CT and Brain MRI. I returned the call and left a message. This makes no sense to me at all. This a very large hospital in conglomeration with other large hospitals in our county. Read: Plenty of $$$$. But they have an answering machine for patients, who call in to make appointments. Unacceptable.

    You know, if a doctor orders a test on a patient, there's a very good reason for that order, and it needs to be done soon. That means every single patient, who needs these tests. Those patients, and their loved ones, are anxious about those tests. They need to know what is going on inside of them, so they can have a diagnosis and a course of treatment, and be well.

    They really need to expand the radiation department at our medical offices and hospital, because they are vital to the tests run on nearly every patient, who seeks care and answers.

    We have a specific time frame in which Jim's tests need to be done. Our appointment with Dr. S is on 1/16. Jim needs to have a blood draw with Nancy 3 days prior to ensure his kidneys are functioning and can tolerate the dye. Nancy works on Tuesdays and Fridays. We have to factor in John, who will do whatever we need, but we respect his time and try to schedule around his work. Dr. S needs to have the test results, before he consults with us on 1/16.

    That is a lot of constraints, when we're in a lottery to get in the coveted machines.

    But, now we wait until Monday to schedule. I am going to try to not think about it over the weekend.

    Christmas

    Jim didn't want to use a place mat on Jon's over bed tray, because it moves around. As I was putting his place mat away, I looked at all of our Christmas linens. I felt incredible pain and sorrow. I remembered how much work, time, and pain it takes for me these days to do anything, and that was true for many years with Christmas decorations.

    It is a constant tug and pull. "Well, maybe I could just do a few things."

    No, I can't. When I start, I have to finish. Everything must be out and in the right place, or I'm not done.

    And, while I don't want to deny Jim the festive atmosphere, or fail to honor Jonathan and Michael with our traditions, I also know that all three of them love me too much to want me to work that hard putting them up and taking them down. Jonathan, Michael and Jim know how much effort I put into Christmas, and they understand how hard it is for me now.

    Yet, I feel so conflicted and like I should be decorating. I should be feeling the joy and the spirit of the season. I should be this, or that, or the other.

    Well, no I shouldn't. I should be me. And me is a grieving mother caring for her terminally ill husband at Christmas.

    Thank you so much, funnylegs4, for your constant support, love and friendship. We love you and wish you many blessing now and always. Thank you for your advocacy and activism.

    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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  18. #290
    Distinguished Community Member
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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
    ((((((funnylegs4)))))) ~

    Congratulations on being on track with your gifting!

    I waited too late, and now the few gifts I ordered for John's family won't be delivered until Christmas Eve. John will visit that afternoon, so I hope they arrive early so I can get them ready. I mega downsized this year just to avoid stress, but I have stress anyway, because their gifts are arriving late!

    As I was discussing Christmas with John on the way to Dr. K's appointment, John said, "Everyone knows your situation and understands, Rose. You always do too much for us anyway."

    Well, they are family to us, and they have done so much for us for the last 24 years. I don't spend a lot of money, and there were times when I made gifts (beaded jewelry for the ladies/girls, floral arrangements, food). But I try to find something meaningful and useful.

    John continued, "The best gift you can give to us is for you and Jim to be healthy and happy together."

    As for the DNR, Jim can revoke that if he chooses to do so. If he's unable to make that decision, I will be the one to make it for him, and I am clear on what he wants and does not want. For example, if he gets pneumonia, I'll ask him if he wants to be treated for it or to just let it take its course. If he cannot respond, I will let it take its course. If he's unable to respond or make a decision, the time will have come for him to join Jonathan and Michael.

    The first thing the paramedics asked me is whether Jonathan had a DNR. I responded, "No, we make that decision as we come to it." Then he asked me if I wanted them to try to resuscitate Jon, and I said yes. All of this, while I was in shock and hysterical. I knew that Jonathan was gone, but I couldn't accept that tragedy. I wanted him back.

    JIM'S UPDATE

    The dizziness has subsided, so it's likely related to low blood sugar or hunger/poor nutrition.

    I am pleased to report that Jim ate veggie baked beans on toast with 1 1/2 eggs (I don't eat yolks ~ intestinal issues for years with them), and one Amy's breakfast sausage. He loved it, and he said it was "perfect."

    Then he napped for a couple of hours, and when he woke up, he wanted a Dave's Boomin' Berries bagel. His gums are sore from wearing his dentures, after not wearing them for awhile. I found a denture liner repair kit, which we'll try tomorrow, with the hope that it solves the problem.

    In lieu of the TV tray/table, which we've been using at Jim's bedside, he requested today that I bring in Jonathan's over the bed "hospital-type" tray for him to use. I wasn't sure whether we had enough room for it, and I worried he might trip or bump into it, when getting up or coming back.

    I had been stacking Jim's sweat pants and bathroom linens on the tray in Jon's room. I'm running out of space. I traded Jon's tray for Jim's tray, and the linens and pants are fine on it. Jim is quite happy with the Jon's tray.

    The first thing he wanted was the iPad, so that he could "look things up."

    "You don't know how to 'look things up,' honey. This isn't a computer. Actually it is, but not the same as our Mac."

    I got him hooked up to the Instacart wine store, so he could look at their vast red wine offerings. I showed him repeatedly how to do everything. "Stay in this lane, when you scroll," "tapping twice doesn't really do anything," "here's how you 'go back'," "here's how you type in what you want in Google," etc.

    "I've got it! Thank you! I'll be fine." He assured me.

    "Okay. I'll leave you to it." And a few minutes later, he was not getting it. When I suggested we try again, he said, "that's okay."

    I had it all set up for him, and he had to do was scroll through 1,838 different types of red wine! Yes, that is how many they carry, according to their page on Instacart. They don't offer a filter to narrow it down, such as wines from Western France, Portugal, or Germany, which are Jim's preferences. No California wines? Nope. He is European, and he knows what he wants. And what he wants is wine and food reminding him of his past.

    Scheduling the CT/Brain Scans

    Radiology called and left a message today about scheduling Jim's appointment for his CT and Brain MRI. I returned the call and left a message. This makes no sense to me at all. This a very large hospital in conglomeration with other large hospitals in our county. Read: Plenty of $$$$. But they have an answering machine for patients, who call in to make appointments. Unacceptable.

    You know, if a doctor orders a test on a patient, there's a very good reason for that order, and it needs to be done soon. That means every single patient, who needs these tests. Those patients, and their loved ones, are anxious about those tests. They need to know what is going on inside of them, so they can have a diagnosis and a course of treatment, and be well.

    They really need to expand the radiation department at our medical offices and hospital, because they are vital to the tests run on nearly every patient, who seeks care and answers.

    We have a specific time frame in which Jim's tests need to be done. Our appointment with Dr. S is on 1/16. Jim needs to have a blood draw with Nancy 3 days prior to ensure his kidneys are functioning and can tolerate the dye. Nancy works on Tuesdays and Fridays. We have to factor in John, who will do whatever we need, but we respect his time and try to schedule around his work. Dr. S needs to have the test results, before he consults with us on 1/16.

    That is a lot of constraints, when we're in a lottery to get in the coveted machines.

    But, now we wait until Monday to schedule. I am going to try to not think about it over the weekend.

    Christmas

    Jim didn't want to use a place mat on Jon's over bed tray, because it moves around. As I was putting his place mat away, I looked at all of our Christmas linens. I felt incredible pain and sorrow. I remembered how much work, time, and pain it takes for me these days to do anything, and that was true for many years with Christmas decorations.

    It is a constant tug and pull. "Well, maybe I could just do a few things."

    No, I can't. When I start, I have to finish. Everything must be out and in the right place, or I'm not done.

    And, while I don't want to deny Jim the festive atmosphere, or fail to honor Jonathan and Michael with our traditions, I also know that all three of them love me too much to want me to work that hard putting them up and taking them down. Jonathan, Michael and Jim know how much effort I put into Christmas, and they understand how hard it is for me now.

    Yet, I feel so conflicted and like I should be decorating. I should be feeling the joy and the spirit of the season. I should be this, or that, or the other.

    Well, no I shouldn't. I should be me. And me is a grieving mother caring for her terminally ill husband at Christmas.

    Thank you so much, funnylegs4, for your constant support, love and friendship. We love you and wish you many blessing now and always. Thank you for your advocacy and activism.

    Love & Light,



    Rose
    Hi Rose,

    Thanks! If you ordered John’s gifts via amazon I think they will get there in the nick of time but I also know that John is the type of friend who wouldn’t care if he got the gift on time or not. John knows the thought counts. Just like my friends. You should not feel obligated to do anything Christmas related. Do what is best for you. I had someone try to make me feel obligated to do something the other day that wasn’t related to me or my loved ones in any way, and I had to remove myself from the situation for my own sanity.

    Ah, thanks for clarifying the DNR situation. For me being unable to talk/unable to make a decision for myself and being denied treatment is like my worst nightmare but that’s just me. I empathize with Jim though. I understand about Jon. I wouldn’t want to let Jon go either if I were you. I’m sorry you had to go through that exchange at all. And see the CPR process.

    I feel you on the tech situation with the iPad somewhat. As part of my advocacy I am helping someone learn how to insert SD cards from a camcorder into a Mac computer, but she is not sure how and every time she makes an error she panics and curses at herself. I wish I could calm the poor dear down. I made those kinds of errors for years and she needs to go easy on herself. Tech stuff is not easy and I can’t figure out the iPads either. You're very welcome! I'm glad my work is making an impact.
    Last edited by funnylegs4; 12-21-2019 at 01:32 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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