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Thread: Jim's Update

  1. #651
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    ((((((Donna)))))) ~

    How well I understand what you're going through. Grief is exhausting. You need to take time to feel all of your feelings. Don't repress anything, because that is unhealthy and continues returning until you've worked through it. It's very important to allow yourself to grieve.

    There are no timelines to grief. And my experience and that of many others is that those "stages of grief" are not concrete or even fall in a pattern. You might go through every stage in one day or even one hour. I have and sometimes still do.

    You also need to consider your role as your mom's caregiver. Every way that you provided care for her, the meetings, the phone calls, and the worry and wondering, the waiting for "what's next?" ~ all of that is gone now. This leaves an especially large void in our lives. Out of habit, we wait for that phone to ring, or we think about arranging a visit, or ...

    We don't realize, until after our loved one has passed, how much energy and adrenaline we expended all of those years as a caregiver. Physiologically, it is a "let down" for our system. That is exhausting, because our bodies are re-calibrating and recovering from years of stress.

    Please rest, eat well, stay hydrated, walk Daisy in the forest, write ~ start a journal just for this journey. Take time for you. You take time for everyone else. Right now, take time for you. If you're in your jammies all day with Daisy cuddling next to you, that's what you need. Try to reduce some of the demands on your time and use it to nurture and love yourself.

    We send you all of our love and hold you, Jim, Nick, Natalie, Karen and your entire family in our prayers.

    We love you ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  3. #652
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    Quote Originally Posted by Donna Thomson View Post
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    Thank you for your kind words and condolences, funnylegs4! Sending you good karma from Canada and stay safe if you anywhere near the hurricane!
    You're welcome Donna! Thank you so much! Luckily I'm not anywhere near Hurricane Florence but some of my film cast/crew is in the path so prayers for them will be appreciated.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #653
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    Thank you so much, Rose. For me right now, I'm not settled about my life story with my mother. Who was she to me and I to her? I loved her of course, but she could be very difficult, but also very funny. I find myself describing my Mom to friends who didn't know her and then I come home and and I think, "No, that's not right. That's how I feel sometimes, but not all the time. She was also...this and this and this." I need to settle on a narrative and then kind of rest with it. I'm not there yet. Thank you for your love. I feel it! And as you say 'recalibrating' is tiring - this is what I'm doing. I keep thinking "I haven't spoken to Mom in a while, I need to call her!" Then of course I remember. It's very strange. Anyway, I am keeping busy. Yesterday I went to Hamilton, Ontario to McMaster University where a bunch of us had a meeting about putting together a grant proposal for a study in transitioning youth with disabilities. We met all day and tried to figure out a research question that would lead to a study that could have real impact on kids throughout the country. The money is from the Canadian National Institutes of Health, so it has to be a health related project which is frustrating because transition is so much more than just moving from pediatric to adult medicine. It's an intractable social problem across society. Typical scenario is that young person with disabilities graduates from high school, loses the day programming, the pediatrician and can't find a GP taking new patients so relies on walk in clinics (not good!), stays at home all day with nothing to do because day programs are full and supported employment costs too much. One parent quits job to stay home too and everyone is miserable. This is so much more than just health. Anyway, I'll let you all know what comes of this and hoping we land on something that makes a real difference.

    Sending you love Rose, and everyone here on CN2 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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  7. #654
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    ((((((Donna)))))) ~

    Grief is all over the place, and what you're experiencing is very natural and common. Your relationship with your mom is complex, and you don't need to figure it out all at once. How can you settle on one narrative, when your life with your mom went in several directions? I went through that too, when grieving for my mom, also a complicated person. It took time to pull all of the pieces together, weigh them, and release them. Be patient and gentle with yourself.

    Transition planning is a special education law in the U.S. The IEP team begins planning for post graduation alternatives, when the student is 14 (unless that has changed ~ it's been many years for me!).

    I filed a fair hearing against Michael's school district when he was 21 for failure to provide transition planning for him. I visited numerous adult day programs, and they were all just horrid. There were several mediation meetings prior to the hearing, and I presented the committee with written details of the disgusting programs, which were available. I prevailed on 3 of 5 issues at the hearing, but Michael didn't have a program.

    Then I served on a county board to create an adult program suitable for my boys and their peers. The couple, to whom we gave the contract, appeared to have everything in place. After my boys attended for 8 months, we pulled them out. The couple failed to keep the standards they had promised. Jon returned to his workshop, and Michael stayed home.

    A lack of adult day programming for adults with disabilities is a health issue. Isolation, lack of socialization, lack of activity and interesting and meaningful experiences is detrimental to mental, physical, and emotional health. Therapy needs to continue too. If the adult's parents have to give up a job and stay home to provide care, that is detrimental to the well being of the family and quality of life.

    Anything, which doesn't enhance an individual's quality of life, is a health concern.

    I wish you success with this project, which is extremely important and necessary for adults with disabilities. Thank you for always persevering as an advocate and activist. You're amazing.

    Sending healing prayers and lots of love to you ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  9. #655
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    Quote Originally Posted by Donna Thomson View Post
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    Thank you so much, Rose. For me right now, I'm not settled about my life story with my mother. Who was she to me and I to her? I loved her of course, but she could be very difficult, but also very funny. I find myself describing my Mom to friends who didn't know her and then I come home and and I think, "No, that's not right. That's how I feel sometimes, but not all the time. She was also...this and this and this." I need to settle on a narrative and then kind of rest with it. I'm not there yet. Thank you for your love. I feel it! And as you say 'recalibrating' is tiring - this is what I'm doing. I keep thinking "I haven't spoken to Mom in a while, I need to call her!" Then of course I remember. It's very strange. Anyway, I am keeping busy. Yesterday I went to Hamilton, Ontario to McMaster University where a bunch of us had a meeting about putting together a grant proposal for a study in transitioning youth with disabilities. We met all day and tried to figure out a research question that would lead to a study that could have real impact on kids throughout the country. The money is from the Canadian National Institutes of Health, so it has to be a health related project which is frustrating because transition is so much more than just moving from pediatric to adult medicine. It's an intractable social problem across society. Typical scenario is that young person with disabilities graduates from high school, loses the day programming, the pediatrician and can't find a GP taking new patients so relies on walk in clinics (not good!), stays at home all day with nothing to do because day programs are full and supported employment costs too much. One parent quits job to stay home too and everyone is miserable. This is so much more than just health. Anyway, I'll let you all know what comes of this and hoping we land on something that makes a real difference.

    Sending you love Rose, and everyone here on CN2 xoxo
    Donna
    Donna,I agree with Rose and I am wondering if you could perhaps focus the study on the emotional/social health of the people in the study?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #656
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    Default Infusion Cancelled Today

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

    Jim was all ready for his infusion this morning. I cut his hair yesterday and washed his “chemo clothes” (which I should change to “Opdivo clothes," I guess).

    All this time, he’s been carrying a Wildlife Federation disposable tote for his infusion sessions, containing a CD player, CDs, batteries. masks, gloves, wipes, an Orgain shake, snacks, etc. Finally, he told me that he wanted a real bag, a man’s shoulder bag, so we searched on Amazon, and he found two he liked. Yesterday, he filled up his new bag with all of his goodies.

    When I went to bed at 2:30 this morning, Jim said that he was feeling okay. When I got up a few hours later, he said he felt very ill. I took his vitals: SATS: 97 (really superb!), Heart Rate: 54 (very low for him, usually 60s-70s), BP: 140/84 (high for him), Temp: 95.8 (low for him). Jim was nauseous and had a sinus headache, and he was extremely fatigued.

    I called the infusion center to cancel Jim’s appointment. The receptionist asked me questions, such as “Does he have a fever? Is he vomiting? Coughing?” No, none of that, just aching from RA pain all over. He took 10 mg Prednisone, as he’s trying to muddle through with as little as possible. She said she would inform his infusion nurse and Dr. K.

    Jim wondered whether he should try to get in tomorrow or Friday. I quashed that notion, since this last round really hit him hard with RA symptoms every day. It can have a cumulative effect. I think letting his body rest for another week is probably not a bad idea. Dr. K may need to weigh in on this, and if he wants to discuss it with Jim, he’ll probably call Jim.

    Jim tried to sleep, but was interrupted every hour to pee. He was able to rest and get in a little sleep. When he got up at 2 p.m., he was feeling much better, and all of his vitals were normal.

    I’m so relieved and grateful.

    MRI and CT scans are scheduled for 9/25.

    Thank you all for your continuing support. You are in our prayers ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  13. #657

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    Hope Jim is feeling better today!

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  15. #658
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    ((((((Marcie)))))) ~

    Thank you for checking in with us. Jim is feeling much better, thank you for asking.

    He was still having some RA pain yesterday and was trying to manage it with 5 mg Prednisone. I speculated that his body is probably craving more of it now, because he's been taking it for awhile. His body likely is accustomed to it, and sometimes it wants more. So he took another 10 mg, and he was somewhat relieved. Today, he took 10 mg, and he's feeling much better. Overdoing it, and I'm nagging.

    How is Mike? How are you? Nick, Bryan, and Jon? You must be getting ready for the upcoming nuptials. May the sun shine upon all of you on October 7th and fill you with love and joy. I will be thinking of you all day.

    As always, our prayers are with you, and we send you strength, healing, positive energy. You are in our hearts, and we send you our love. We are clasping hands with you and walking beside you on your journey.

    God Bless You!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  17. #659

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    Rose, So sorry the RA is acting up right now. Would increasing the THC in his cannabis products help him any? I know there are some good strains out there for inflammation/arthritis.

    Also, as an OT, I would urge him to REST HIS JOINTS! When the RA is active it is very easy to cause more joint damage. He needs to rest as much as possible, and try anything he can think of to settle down the inflammation. I guess you can tell him I'm nagging him as well.

    Hoping your weekend is peaceful!

    C

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  19. #660
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    ((((((callyflower)))))) ~

    Thanks for sharing your opinion and advice. I couldn't agree with you more!

    When I explain to Jim that doing too much increases his pain after the steroids wear off, he says, "I know." "Lesson learned." And then, he says, "I can't just sit here and watch you do everything."

    Then I attempt to explain to him that his pain is more work for me, because I have to take care of him. It's more stress for me, because I'm worried about him. When I see him bending, stooping, pulling Jon over in the bed, and I'm right there, I scold him. "Stop! I'm here!"

    I'm too tired to continue with, "Honey, please don't do that, you might hurt yourself."

    We order oranges for fresh juice and to give to guests as a parting gift. They are luscious, from an orchard in Central California. A 40 lb box on our doorstep. Jim says, "I'll help you." Nope. I drag it in, then I open it, and I gradually transfer the oranges from the box to a basket in Michael's room.

    When he bends/stoops, he gets out of breath. When he drags a box in, his fingers flare with pain later. When he lifts anything, he gets out of breath. I am fully aware of what he cannot do, without causing him distress. And when he insists, I have to be firm.

    Now, anytime I grunt or make a noise, when lifting or moving something, or bending, etc., Jim calls out, "What's wrong, honey? Are you okay?" He's sure that I'm going to hurt myself. Well, I pray that I don't. But I get a lot more exercise than he does. I walk 2 miles/day in the fresh air and sunshine. I carry laundry baskets.

    For an old lady, my biceps are pretty decent. Now the underside of my arms, well, when I wave goodbye to someone, they slap me in the face!

    It's been a hectic week, and today, Jon's nurse stopped by for Jon's recertification for nursing services (must do it every 2 months). It was just for a signature, but she stayed over an hour to bring us up to date on the agency and her work status. She's staying on a per diem after November.

    I spent the morning tidying the house and bathing Jon for her visit. Jim wanted to help me, and I told him to just relax and watch football. After she left, Jim was waning. I told him to take a nap, and he bemoaned, "I feel guilty. You get so little sleep, and you work so hard."

    I mimicked playing the violin. "Go to bed. Bye!"

    He needs to save all of his energy for our nightly ritual of pulling Jon up in his bed. I cannot do that by myself any longer. I can do everything else, all of the things, which he wants to help me with, but I cannot pull up Jon.

    I'd guess I've told him that a hundred times or more. And that's just within the last week!

    I will definitely tell Jim that you are on the Nagging Train now with me! Thank you!

    Men are stubborn. But also, he loves me and worries about me too. I understand. One of the many things I have always loved about Jim ~ he is gallant!

    Thanks again, Cally ~

    Healing prayers for you and your family always on the way ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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