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Thread: Jim's Journey

  1. #381
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    Hi Rose and Funnylegs4, a condom catheter might be a great idea for overnight! It's a bit like using a bedpan and takes a little getting used to but Nick relies on one (for him, during the day), but Jim could just use it at night. They are easy and very little risk of infection compared to indwelling caths.

    Oh Rose, what a roller coaster ride you are living! I'm so glad that Jim has started eating and drinking - and that he is optimistic about the scan and the drainage. You are so encouraging and so respectful of Jim, even when he makes different choices than you would make for him. Balancing choice, dignity and life-saving is incredibly complex and you do it with so much grace and compassion (not to mention skill and knowledge). All these qualities make you BEAUTIFUL!!! I hope that Jim has a good day today and another tomorrow. Lots of love from Cat Island where my dear friends (local people) are praying for you. 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: http://www.donnathomson.com


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  3. #382
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    Thumbs up A Better Day

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

    funnylegs4 ~

    We do have accessible w/c transportation in our County. We could dust off one of Jon's wheelchairs in the garage for Jim. Of course, we also have a wheelchair van, but I can't handle doing the tie downs. I suppose that's where we could use John's help. Thanks for this thought. I'll mention it to Jim.

    Dr. K has said "No" several times to an indwelling catheter, as the risk of infection is great for Jim. Nancy agrees.

    Donna ~

    Please thank your Cat Island friends for their prayers. How very kind and loving to pray for total strangers. God Bless Them! I feel that I know them all from your many years of sharing your experiences with them. I often think of them and their struggles and amazing courage. We send them our love and prayers.

    We tried condom catheters with Jim, and it didn't go well. When the adhesive gets wet, the condom slides off. If we tape the condom, it tears Jim's skin with removal. We had the same problems with condom caths with Jonathan. Jim and I did discuss this as an option today, and in fact, he was thinking of it, before I mentioned it. Then we revisited the past, and we put that on the back burner.

    Jim is doing well using the bedside urinal. I ordered 8 more urinals for him today. I don't like to use them for more than 2 days, as they do get a bit icky.

    TODAY'S UPDATE

    Jim did well last night. I stayed up with him until 1 a.m., when he "ordered" me to go to bed. He slept for a few hours, woke up to pee and have some water, then went back to sleep for a couple of hours.

    Lasix first thing this morning resulted in some copious output, all clear. He wanted to sleep again, so he waived his oatmeal and applesauce. When he woke up 3 hours later, he had heartburn and didn't want to eat. So, he took a Tums, and we're waiting for him to feel up to a meal. He knows that he needs to eat, and he wants to eat, but his belly full of fluid interferes with his desires.

    Off of O2 his SATS have been in the low 90s, so we're giving that a try. When he was out of breath from going to/from the bathroom, we worked on his breathing techniques, with the pulse oximeter on. I stood beside him, quietly encouraging him, "Calm, in and out, go to your happy place. See the sunsets in Greece. The ocean lapping on the shore in Laguna. The quiet of the snow in the mountains. Fresh air."

    We were successful! Jim knows exactly what to do, but with my guidance, he calms more quickly. Fortunately, I have experience with these techniques. It's one of the ways I cope with stress.

    I texted Nancy to ask if she could visit tomorrow to take a UA to rule out a UTI, and also to assess Jim, listen to his lungs, etc. She called Dr. K for the UA order and will be here tomorrow.

    I don't think Jim has an infection, because his urine is clear now, no stinging or pain, no blood, and his temperature has remained normal through all of this. But, there is no harm in making sure.

    Jim and Nancy have a special bond. I remember so well, when Nancy visited to change Jon's catheter and was talking about the dance classes she and her husband were taking. Within moments, Jim swept Nancy into his arms and asked her to dance. Jon and I watched them for a few steps, then Jon and I began dancing. What a beautiful memory.

    Of course, Nancy and I have a special bond too. She has brothers and wanted a sister. Here I am. I have an estranged sister, and here Nancy is. I am so grateful for the blessing of Nancy.

    Thank you funnylegs4 and Donna, and all of our friends here, for your love, caring, support, understanding, and enduring friendship. We love you, and we pray for you and your loved ones and give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  5. #383
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    Default The Move

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

    It's midnight, and I just spent 2 hours cleaning Jonathan's bed, removing all of his memorials, and setting up Jon's room for Jim. I brought in his nebulizer, O2 concentrator, Jon's over the bed tray, and everything else Jim needs. Per his request, Jim is now in Jonathan's bed.

    Jim was uncomfortable in his futon nest and found it difficult to get in and situated. He now has the benefit of Jonathan's alternating mattress and is closer to the bathroom. The only thing he doesn't have right now is the TV, because I don't know how to hook it up. I depended upon Jim to do that, and then John.

    Tomorrow morning, I will text John to tell him that Jim has relocated and ask him to stop by for a few minutes to bring the HD cable box back into Jon's room and hook it up. Meanwhile, Jim will have to be content with his crossword puzzle, Consumer Reports and a book. He was in pain, so he took a T/C. He will probably go to sleep in an hour or so.

    I have piles of stuff stashed on the chair bed, which I will try to find a place for in the morning.

    It's been an emotional evening in many ways.

    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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  7. #384
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    Rose, Wow what a huge step! I hope you slept well after all that work and emotional stress. Just one more example of putting yourself and your feeling second. You really are a beautiful person and it shows in everything you do. I'm sure Jim will be more comfortable and maybe you can rest a bit more as well. I'm so glad you have Nancy and John in your life. They seem to really be a blessing.
    Just a thought on the drinking water... For Kathleen hydration is extremely important due to the Moyamoya. She really hates just water and I don't like her drinking juice all day. Even the no sugar added has either fake sugar or just more than I'm comfortable with. I finally found something that fits the bill. Hint water. She loves it and never even asks for juice anymore! I get it at target for 1$ a bottle on sale but you can get it online. They have many flavors too. It's just lightly flavored water no sugar and no fake sugar!
    Tonight is Kathleen's prom! She's so excited. I'm praying our weather hold out. We're supposed to get some messy weather today but I'm hoping it stops in time to get there.
    Mary Grace


  8. #385
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    Default Adjustments

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

    Mary Grace ~

    Oh, how I hope your weather is holding out! I can't wait to see the prom photos! Always a highlight of the year for me! Kathleen and her joyful radiant smile!

    Thanks for telling me about Hint water. I will explore that and buy some for Jim to try. He's drinking his water without any fruit in it, but he also sips an apple juice after his water.

    Thank you so much for your kind words. I think we all put ourselves second to our children and spouses. We want to give them everything that they need and ensure that their lives are rich and full.

    AFTER THE MOVE

    At 3:00 a.m., I heard Jim cough and ran downstairs to check on him. He was in Jon's recliner in the living room watching TV! He had gone to the bathroom, took a breathing treatment, and then decided he couldn't sleep and wanted to watch TV. He was off of O2 with decent SATS.

    I checked him at 4:00, and he was sound asleep. 5:00, 6:00 still asleep. I got up about 7:00, and still asleep. I didn't take my walk, because I didn't want to disturb Jim. About 8:30, he woke up, and we went back into Jon's room, got him settled, gave him a breathing treatment and his steroids, some tea, and he slept from about 9-11:30.

    John showed up at 10, so I had to whisper at the front door that Jim was asleep. He said he'd come back about 12:30. Well, he came back at 11:30, just as I was getting dressed after my shower (which I really really really needed). Fortunately, Jim was up and on the toilet.

    John set up Jon's (now Jim's) TV with the HD cable box from the living room. When trying to hook up the old cable box to the living room TV, he decided that he would stop by tomorrow, take the old box to the Spectrum place and exchange it for another HD box. "This box is probably 15 years old, Rose. You need a new one." I just thanked him, because he's such a gem in a field of rocks and stones.

    I had a "Honey Do" list for him, but I didn't want to impose, because I didn't want him to be late for his tee time with his best friends. Theu golf every Friday afternoon. He did rehang our old, torn kitchen window shade, which fell off a couple of weeks ago. The morning sun is blinding, and it's a challenge for me to get anything done until the sun moves away from the kitchen by mid-morning. He asked me to get some steps to stand on, and I went to the garage. He called to me, "I got it!"

    I used to be able to rehang this stupid shade, when I was 2 or so more inches taller. And a few years or so younger.

    I want a new shade so much, but that is not vitally important in our world now. I just need the sun not blasting me out of the kitchen.

    A few minutes after John left, Jim noticed that John's phone was still on his bed. We laughed, because I had no way of contacting him, unless I had him paged on the golf course. Jim said, "It won't take him long to discover he doesn't have his phone. He'll be back soon."

    And he was. He drove up in a golf cart, as I expected. The neighborhood above us has direct access to the golf course, and it takes about 2 minutes by cart to get to our house. John and I laughed, because I know how attached he is to his phone. Of course, he needs it with him as he has his wife, daughter, other family, and an elderly Mother, with health issues.

    Nancy was delayed until 2:30. Lots of roadwork in our area slowing traffic. She also takes care of a trache patient, who uses a ventilator at night, and she was delayed waiting for the second nurse to arrive in case of an emergency. Nancy bemoaned that she doesn't know anything about ventilators, and that sometimes the trache is hard to remove. I told her to tell her bosses to hire a respiratory therapist to take care of this and other patients' trache/vent needs. They used to have them in the agency, because RTs visited Michael a few times. In ICU, RTs, and often pulmonologists, change traches. Nurses don't.

    Nancy checked Jim's wounds on his bum and complimented me on taking good care of them. I laughed. "I haven't changed his dressing for a week, Nancy, because he's been too ill and unable to turn in the futon bed." Still, they did look good, and they will improve now that he's on an alternating mattress.

    Although Jim had taken his Lasix at 1:00, and was drinking well, he didn't feel like he needed to pee for the UA sample. Nancy said she had another patient, but would come back to pick up the sample later.

    Okay. I'm really super duper tired, and I selfishly just wanted to relax. Nancy is really super duper stressed and overworked today. So, I asked Jim, "Honey, could you possibly get up and try to have a pee? Just try? If it doesn't work, we'll go with plan B."

    So, the three of us trotted off to the bathroom, and I turned on the sink faucet for encouragement. Success! Nancy called the urine's color amber. I'm still thinking that Jim isn't well hydrated, and his urine is concentrated. But, we'll see what the UA results are and go from there.

    JIM'S ASSESSMENT OF THE MOVE

    I think Jim has told me a dozen times that Jon's mattress is "so comfortable." The alternating is subtle and not disturbing. He's so glad to be in Jonathan's bed.

    We have no doubt that Jonathan agrees.

    With TV set up now, Jim is a happy camper.

    He ate a bowl of oatmeal and a tub of applesauce this afternoon and announced that he wants this for breakfast every day.

    "Whatever you desire, sire. You're wish is my command." (We watch a LOT of OLD movies!)

    I'm hoping he has something in mind for dinner. Last night, he ate a sliced tomato, about 2 T of hummus, and 2 small marinated artichoke hearts. Maybe he'll order a sloppy egg and fried potatoes tonight. It takes him awhile to decide what is appealing.

    Whatever it is, he will have it.

    AFFECT OF THE MOVE ON ME

    As I removed all of Jon's tributes and scrubbed his mattress and room last night, I didn't have time to think about my sorrow. I just knew that Jim needed to be in Jon's bed right now. Not tomorrow, or the next day, but right now.

    As I worked, I talked with Jonathan, thanking him for this place for his dad, where I know that he will be more comfortable.

    I forced myself not to see the image of Jonathan on April 12, but to see Jim comfortable and surrounded by Jonathan's and Michael's love and light.

    I haven't had time or energy to process any of this yet. I know what it means for Jim to be in Jonathan's bed now.

    I told Jim today that I am grateful for our snuggle last week, because there will be no more snuggles. The bed/mattress can only accommodate one person.

    Jim is surrounded by his over the bed tray, and several TV trays to accommodate all of his needs and allow him access to everything. With Jonathan, we were able to have a separation between his supplies and him, because we cared for him. I have to wade through all of these obstacles just to reach Jim to hold his hand or kiss him.

    Jon's IV pole is in the living room, and I've had to move it several times today so John could access the TV. It will probably be needed for Jim. But there isn't any room for it right now in Jon's room.

    This morning, I called radiation oncology to cancel Jim's appointment with Dr. S on Monday. The receptionist asked me if I wanted to reschedule. I replied, "No. I don't think so." I know she knew exactly what I meant, because we know her, of course, and I could hear it in her voice.

    Meanwhile, Jim is content, sipping his decaf espresso, which I made for him per his instructions. He is comfortable. That's all that matters.

    We thank you all for your love, prayers, support and constant friendship. We pray for you and your loved ones everyday.

    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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  10. #386
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    rose ,

    reading about the affect of the move on you, i could feel my heart get heavy. your instinct that jim had to be in jon's room and bed right then and you cleaning everything so late at night....((hugs)).

    i wish strength for you because caregivers have such an emotional and physical load to carry. it seems jim is at peace and i pray for continued comfort for him.

    words seem so inadequate...


    jeannie
    WE ARE BT!
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  12. #387
    Distinguished Community Member agate's Avatar
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    Rose, the move sounds as if it was a great idea! And I'm glad John was there to help with the TV. I'm flummoxed by TVs too now that you no longer just plug them in. There's all of this "stuff" to hook up and get right.

    Glad too that he was able to help with rehanging the shade too. We all need someone to do for us sometimes.

    I'm sure Jonathan would have wanted this move to happen.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  14. #388
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    Hi Rose,

    I think moving Jim into Jonathan’s room was absolutely the right thing to do! GREAT THINKING! I’m sure being in Jonathan’s bed will help Jim’s bones and joints and he gets to feel closer to Jon that way too I’m sure. The fact that Jim felt well enough to go into the TV room before you moved it in Jon’s room is a good sign! I can only imagine how painful it was to remove Jonathan’s stuff. I’m so sorry.
    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. #389
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    :) Rose I daily put you and Jim in God's hands when I meditate. Doing Jon's room had to be hard. I am glad Jim is more comfortable and maybe that will allow you more rest. I feel sure your sons are watching over both of you. John is an angel. Many prayers for you both at different times of the day. With love, Jeanie :)

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  18. #390
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    Oh Rose. It must have been so hard to move Jim into Jon's room, but what must be done must be done and there is no one who knows that better than you. Always, you (we) put those we love first. You are moving together towards the inevitable end of Jim's disease, but oh, you are living in the meantime! There is so much love in your posts and we all here on CN celebrate with you when Jim has a good day, or scarfs his baked potato and sloppy egg. We are your cheering team of supporters and we love you. May it be a good day tomorrow and may Jon and Michael's spirits infuse Jim's space with their love and their peaceful hearts. Sending much love and many prayers as always, Donna xoxo
    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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