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Thread: Jim's Journey

  1. #321
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    ((((((Hugs to All)))))) ~

    Jeanie ~

    Oh, that is great news that your Shingles are gone! YAY! I will be praying for your insurance to cover PT, because I know how very important it is to maintaining strength and mobility. Are you able to do any PT exercises on your own? I wish I could fly to Florida a few times a week to help you!

    Thank you so much for your prayers. We are holding you close in prayer, dear Jeanie. Stay the course and be good to yourself.

    JIM'S UPDATE

    Yesterday, Jim and I had a conversation about him stopping his CBD and THC. He has gone too many days without it, but he couldn't give me a viable reason why that was. I convinced him to go back onto them, because they are the only defense he has now for his RA, cancer, and immune system. They've kept him going for 3 years, and even Dr. K told him to try cannabis.

    So, he took his CBD and THC capsules last night, and he felt much better. He slept well for a few hours.

    Jim has also been sporadic about taking his multivitamins and Vitamin D3. I have been negligent there as well, so we both agreed to return to our daily vitamin routine.

    Today, Jim asked me to apply some Aspercreme to his shins and ankles, as he was having terrible pain. I realized that his socks were cutting off the circulation to his legs. He hasn't changed his socks since 12/18! That's when we saw Dr. K. I have told him numerous times to change his socks, but he has ignored me, and he won't let me change them for him. I should have insisted, and from now on, I will.

    I massaged his legs, then applied paper towels soaked in Witch Hazel to reduce the swelling. I put a wedge under his legs, and he felt relief. Then, he decided he was fine and didn't want the wedge, so I put it back in Jon's closet.

    The other wedge used for Jim's head is now under Jonathan's Lakers comforter on his bed.

    Well, the wedge is back under Jim's feet.

    He has a urinal, so he doesn't have to get up to go to the bathroom.

    Jim apologized to me for not listening to me about his socks, and I told him that we now know not to do that ever again. It's not his fault. It's mine. I'm his caregiver, and I should have recognized the long term problem those socks would create.

    It has been a long and busy day. Now, I'm going to warm up leftovers from yesterday.

    Thank you all for your love, prayers and support. We love you and pray for you and your loved ones. May you have a blessed new year.

    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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  3. #322
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    Hi Rose,
    You are balancing a tight rope between respect for Jim's independence/personhood/dignity and his need for care when his own vulnerability interferes with his self-care. Please don't blame yourself! You are doing the very best you can and your capacity for excellence is beyond the beyond. Jim gets so frustrated when you try to do too much for him so when you pull back, you are also caring for him. I wonder if you both could agree to do a full body check every day and then you wouldn't have to bother him when he doesn't feel like being bothered. Of course this doesn't solve the meds problem. Is it time for a dispill plastic daily container so that you can both see whether he's taken his meds or not? Anyway, I just wanted to say that you are doing the most fantastic caregiving job imaginable for your dear Jim. No one EVER could do better. We all learn so much from you! In your last post, you said that your life's purpose is to care for Jim, Michael and Jon. Yes, it is and it's also to serve as an example to thousands of the rest of us. Thank you, Rose. 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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  5. #323
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    ((((((Hugs to All)))))) ~

    Donna ~

    Oh, I'm crying. Thank you so much for your lovely words of support and praise. Imagine me ... speechless ...

    But not for long ...

    From the beginning of my journey with Jonathan and Michael, I knew that God gave them to me as a gift, and with that, I was also given the gift of communication and the gift of determination.

    As you, and all of our CN parents know, we are destined to be strong from the moment we learn that our child has a disabling condition. It is a rugged road, with many twists and turns, unexpected obstacles, and unfathomable crises.

    Jonathan and Michael empowered me to be their advocate and in so doing be an advocate for their peers.

    Whatever skills we have, we hone, and we become unstoppable. That is true of all of us, who belong to BT and millions of others rowing in the same boats.

    You, all of our CN parents, all of our BT members, have shared, informed, educated, supported, and helped thousands of people too. I have learned so much from everyone in my 20 years here.

    I am so grateful that others are learning from my experiences with Jonathan, Michael and now Jim. Yes, I know this is one of my purposes in life. And I will commit to it to the end of my life.

    But the loss of my children and husband, who are the light and love of my life, will remove my primary purpose as their caregiver and advocate. I've done this for over half a century, which boggles my mind, so letting this part of my life go is particularly difficult.

    Now to Jim's Update, because we are going to reline his reline of his denture soon. I just need to get him to the dentist to have this done, as we've spent hours unsuccessfully toiling over it.

    JIM'S UPDATE

    Meds

    Jim doesn't usually forget his meds, he just chooses not to take them, for whatever reason, which he often can't explain to me. That's what happened with the CBD and THC. One day I asked him if he'd taken them, and he replied that he hadn't and decided to "give them a break." I tried then to convince him that this was his only medication battling cancer now, as all of the rest are battling something else, like Ascites and pain.

    I gave up on that issue, until some time had passed, and his condition had changed. That's when he realized that I was probably right that he would benefit from CBD and THC. And he has.

    You are so right that it's a balancing act between giving your loved one freedom of choice and making decisions and intervening as a caretaker. And it is weird with us, because on the one hand, Jim says he doesn't know what he'd do without me, and that I know so much about caregiving and medical stuff, but on the other hand, he says, "I know my body."

    Well, we can know our body and be wrong.

    Ankles and Feet

    Swelling today, edema which is only relieved by elevation of his feet, now with a bolster under his legs. When he sits up with his feet on the floor too long, then we have swelling.

    This might have happened anyway, but I feel that it was precipitated by wearing his socks for too long.

    If it continues, I suggested that we may have to increase his Lasix, as Dr. K suggested on 12/18, to 40 mg a.m. and 20 mg p.m. This means that he is never off of the toilet and will get no sleep at all.

    I don't know whether codeine or tylenol could cause edema, but I will research that. I do know that Tylenol is hard on the kidneys and liver.

    Appointments

    I changed the appointment with Dr. S to Feb. 10. This gives me plenty of time to schedule Jim's CT/MRI, when it is best for him.

    Nancy will visit on Tuesday to flush Jim's port and probably draw blood. I will email Dr. K on Monday morning for an authorization. Then, Jim will have another blood draw before his tests, whenever they are scheduled.

    That's our story for now.

    Thank you again, Donna, for your kind, loving support and enduring friendship. You, Jim, Nick, Natalie, Alex, Daisy, and your entire family are in our prayers always.

    Our love, prayers, and gratitude 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.

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  7. #324
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    Rose, I would suggest you start the increased lasix right away. In my opinion, the socks are not the cause. If you can get the fluid off, you may be able to back off on the lasix again. Take the first dose at the crack of dawn and the second right after lunch. The major peeing should be done by bedtime. The fact that he’s urinating so much at night is a sign of edema. My mom would have that during CHF exacerbations. https://www.healthsearchonline.com/f...nation-causes/

    Keep the feet elevated and encourage Jim to pump his ankles frequently. Of course regular walks would help as well.

    Hope this helps.
    Last edited by callyflower; 01-03-2020 at 08:17 PM.

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  9. #325
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    Hi Rose and Callyflower - would pressure socks help at all? You both are the experts here. Rose, I send you so much love and hopes that today is a good day. You are so right - "we can know our body and we can be wrong." What did you think of my idea of doing a body check at the same time every day (if that's possible) in order to carve out a ring-fenced time for a conversation about "What do you feel?" followed by "This is what I see..." and then "What should we do?" I don't know, I'm just thinking that if these issues pop up on an as-needed basis, they might feel like .. I don't know.. some kind of loss of power? Anyway, just a thought. I am always thinking of you and feeling so grateful for our friendship!
    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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  11. #326
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    TED hose might be a good idea, especially since Jim is sedentary. However, they are a bear to get on even with normal healthy strength. I would suggest getting a home health aide in to do bathing and personal care 3X a week. That would take the pressure off of Rose as well as ensure that Jim is being adequately cleaned (patients are far less likely to refuse to bathe with an aide) and he/she could doff and don the TED hose. Home health can set that up

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  13. #327
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    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for your expert advice.

    We started the 20 mg Lasix this afternoon, in addition to his morning 40 mg. With Potassium, of course. Jim is in complete agreement with this approach, particularly since Dr. K suggested it at our last visit. At the time it pertained to his Ascites, since he didn't have foot/ankle swelling then.

    We are keeping his feet elevated in bed, When I told Jim your suggestion about pumping his feet, he said, "I've been doing that." He often exercises his legs and feet in bed. He's been doing that since his diagnosis in 2017.

    EXERCISE

    Today, Jim mentioned that he'd seen a pedal exerciser advertised on TV. I found a slew of them at Amazon. In your opinion, is this a good idea for him? We have zero room in the living room for anything else, but I noticed "desk" exercisers, which means we could slide it under his bed.

    Years ago, we bought a treadmill, which ended up in our garage. I think Jim used it 5 times. Then he wanted a chair exerciser for seniors, with straps to pull etc. He watched the video, but he insisted that he could do more than the instructor, and that's when his RA went into a major flare. That chair is folded and tucked between the wall and our teak wine cabinet. Something else for me to dust!

    I've been thinking of attaching the pedometer to Jim for a day to calculate how many steps he takes to/from the bathroom and kitchen. Recently, when Jim was feeling better, he walked to/from our mailbox, which isn't far. He was out of breath each time, but he was trying to move more. I give him all the credit in the world for trying.

    He would dearly love to take a walk with me in the mornings, or to the golf course overlook, which is maybe 1/16 mi, in the evenings to watch the sunset, or to Laguna Beach to look at the galleries and boutiques, tip our toes in the ocean.

    It breaks my heart. Here is a man, who could do anything, build anything, lift anything, fix anything. He was a scaffolder, who carried heavy pipe on his shoulder, while tiptoeing on a 2 by 4 and climbing. He restored numerous estates and public buildings in England. As a subcontractor, he was in such demand that he had to turn away projects.

    Through the years, I remarked to him that he would have been a good cat burglar, because he was so light on his feet, you'd never hear him approaching.

    So, he's always thinking of ways to strengthen his muscles, and he worries about his loss of mobility. He doesn't give up. He yearns for and dreams of being stronger and beating cancer.

    COMPRESSION

    We have an assortment of sizes of compression "tubes," which we cut from a roll to fit the area we're treating. These were Jonathan's tubes. We did his feet sometimes, his feet to his knees, his ankle to his knees. With Jonathan, the compression just pushed all of the fluid up into his gut, and then we had problems, just like Jim.

    Jonathan probably had Ascites, but our GI never mentioned it, nor did Nancy, or our PT. He did have lymphedema, but the last time our PT saw Jon, he said, "this is just fluid, not lymphedema ... give him Lasix?"

    Jim's gut was 41" today, so I worry about the compression tube doing the same thing to Jim. What is your opinion there, cally?

    HOME HEALTH AIDE

    At least 3 times a week, Jim bathes himself using the bathroom sink. He doesn't tell me that he's going to do it. He just feels in the mood, and does it. Sometimes Jim says, "The least I can do is be clean and groomed for you, my darling. You don't need to look at this mess everyday."

    Showering is difficult for Jim, because he gets cold so easily. He loves to shower, and he can climb in and out with me there for support. But I can't soap him and scrub him in the shower, because it is too small. Too small for a shower chair. I'd have to climb into the shower with him to bathe him. But he does fine, when he can get over the cold issue.

    Jim is fastidious about his nether region every time he goes to the bathroom. Diligent. He is taking care of himself the same way he took care of Michael and Jonathan. He knows how important this is, so he often reminds me that he is taking good care of himself in that regard. I check him (will get into that in detail in my reply to Donna), and I can see that he is.

    Jim also shaves with his electric razor, then may touch up with his razor. I offer to help him, but he insists on doing this on his own. He does a good job too, as it's difficult for him to see.

    As long as he wants to and can do these things for himself, I encourage him, while also supervising and assisting him. Like relining his dentures ... We work on this together, but the physical aspect of the application process requires quickness and steadiness. Jim's hands shake now, sometimes they cramp, and this may be PN, or anything else. Does not matter, because it is.

    For that reason, I did the application for the first reline of his upper denture, and that went well. The lower denture is tricky, and I did the first reline, but it sank at the pegs. Jim did the second reline. Same thing.

    But yesterday, after he had worked so hard for so long to get all of that silicone off of his denture, he decided to try it again. His hands shaking, I asked if he wanted my help, and he declined. It still sank at the pegs, which is probably always going to happen. But he wore them today and ate, and they were comfortable.

    For as long as Jim is able to attempt and do these kinds of things, I want him to do them. But, he also knows when he's overwhelmed, as today, when he said, "Honey, I don't mean to be lazy, but would you warm up my tea in the microwave? I just want to keep my feet elevated."

    Coordinating a home health aide is a challenge, since our experience with Jonathan was that the aide decided the day and time of the visit and exactly what s/he would be doing. In Jon's case, I asked for an aide to help me turn Jon, so that I could bathe him and change his linens. The aides called after 8 p.m. and left a message that they'd arrive at X time the next day for an hour to bathe Jon.

    The aides decide their schedule without regard to the patient's individual need. I had to cancel Nancy, John, our PT, wound care nurses, the toenail team, even our GI, because Jonathan was not up to whatever their purpose was for him. Fever, fluid overload, vomiting, off his feeding, unable to be turned, or finally asleep after days of insomnia, or seizures.

    John is waiting in the wings for us to call him. He will do whatever needs to be done, and help me with Jim, just as he did with Jonathan. And just as John and I did these things for Jonathan, our hearts will break as we do them for Jim. And Nancy will never leave our side. She refuses to retire as long as Jim needs her. We are not alone. John's entire family is just waiting for us to ask them to help us with something, anything. They made that clear in their Christmas messages to us.

    Thank you so much, callyflower, for supporting us and sharing your wisdom and knowledge with us. We do need your guidance, and we are so grateful to you for providing it.

    Donna ~

    I love your idea of a daily body check, and we started it today. I am charting everything now. I fell short on that for quite a long time, but Jim and I agree that we need to keep a close eye on everything and chart.

    So, we started today with weight, gut girth measurement, BP, SATS, HR, temp, and tracking meds. I also did a full body inspection and applied Calmoseptine to the tiny ulcer on Jim's bum.

    Jim is actually very good about reporting everything to me now. He tells me about his BMs, what he's eaten, his fluid intake, his pain, his breathing treatments, everything. And I ask him constantly how he is feeling, what he needs, and he responds openly.

    I went to bed at 10 p.m. last night, just so knackered that I could not stay awake. Jim was asleep, so I went to bed. At 11:15, Jim was calling me. Half awake and half asleep, I jumped out of bed, ran downstairs, and I found Jim sitting on the side of his bed gasping for air and grabbing his chest. When he woke up, he went to the toilet. He came back worn out.

    "Heart attack?" I asked him.

    "No, tumor and rib pain."

    I checked his vitals, and they were surprisingly good. I set him up with a nebulizer breathing treatment, redid his vitals, and he was fine.

    A T & C tablet for his pain, and he was asleep within 30 minutes.

    I want to discuss morphine in lieu of codeine to manage Jim's pain with Nancy and Dr. K. Dr. S said that he'd increase Jim's steroids, probably to reduce inflammation from radiation. Jim is torn between pain meds and steroids now.

    So, I feel that Jim has once again realized that I know his body too, and he wants my input. He understands now that I'm hearing everything he says and everything he wants. But we are both in charge of how he is treated for whatever arises.

    Yesterday, when discussing Jim's CT and brain MRI, I gently reminded him, "I have this covered. I'm on it. You don't have to worry about it, because I will make sure that it works for you. Just turn it over to me. You know I will be doing this anyway. Trust me. Let it go."

    And he did. "Just tell me when and where, and we'll go from there."

    Nancy will be here Tuesday for a port flush and blood draw, and we will address all of these new adventures with her. I will also inform Dr. K in my email to the health portal what is happening currently.

    I'm sure that is more than anyone wants to know ... but there it all is.

    Thank you so much, callyflower and Donna, and to all of our friends here. We love you and pray for you and your loved ones.

    Love & Light,



    Rose









    We've gone through our holidays with depression and frustration, and we're trying to come out of it in the new year, with more hope and positivity. We are also rediscovering our sense of humor.
    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. #328
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    Hmmmm, not sure about compression tubes. My worry is that edema may pool in the area where the tube ends. The last thing you’d want is any impairment to free flowing fluid. Maybe ask Nancy her opinion when she comes as she can actually see and feel the situation.

    Seems TED hose probably wouldn’t be appropriate either, as Jim is still somewhat ambulatory. A real compression stocking would be what he needs...if Nancy feels it’s appropriate.

    Yes, the pedaling device would be excellent. It can even be placed on a table and used with arm exercises.

    It’s good Jim is still sneaking off to spiff up himself. I didn’t realize that was happening, especially given the length of time he wore those socks. Carry on, Jim. My mom didn’t like showering either, because of the cold. She’d run the heater in the bathroom for 30 minutes before showering. She stayed mostly independent with showering right up until the last couple of weeks.

    Hope the lasix helps. Believe it or not, Jim is still on a pretty small dose, so if this doesn’t work, call the doc and ask for advice. Glad you have potassium on board.

    Hugs.

    C

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  17. #329
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    Rose, I can't even begin to imagine all that's on your plate. It kinda exhausts me LOL. All the ups and down, hurdles and hoops you jump through, all the unkowns you navigate through, and all the emotions you hold in. You amaze me! I know I've said it before but every time I read your posts it just bring it to another level. I think what resinates with me the most in your recent posts is your words about only having been a caregiver for so long and what will you be when you are no longer a caregiver. You are and have been so much more than a caregiver! You are so much to all of us and to the individuals you have touched in real life along the way. Think of all the times you've shared your story and all the times you've helped us here at braintalk. This is your life your writings, your stories, your love for complete strangers. You educate and inspire and will always do so.That's more than most people can boast about. We love you and your family and I personally am in Awe of all you achieve. Thank you for being the inspiration and for helping us all through so much. Always reading your posts, praying for your family, and sending positive peaceful vibes your way.
    Mary Grace


  18. #330
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    Dear Rose,
    Cally and Mary Grace have given you such wonderful support and true friendship. I know you know this, but you are not alone! We love you!

    It sounds like you and Jim are working so well as a team now. That is a huge achievement because like Mary Grace said, every single situation you encounter is new and is a threat to independence. There are so many powerful emotions wrapped up in this journey and how anyone reacts to this kind of serious illness depends a lot on what relationships were like before the illness. You both have such a long history of caregiving and now Jim has had to learn to receive care - totally new territory for you both. You are doing this with so much love and respect for each other. It just makes me weep.

    I hope the coming days and weeks will bring relief for Jim's fluid retention. Thinking of you as always and sending love. xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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