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Thread: Jim's Journey

  1. #511
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) Rose and Jim I hope you have a blessed Easter. With sadness that it is also Jon's angelversary. I watched Dr. Charles Stanley's Easter message tonight and it was moving. I am so grateful God sent Jesus to pay our sin debt so we can go to heaven.

    You remain in my prayers and somehow the plumbing will work out for you. I look forward to hearing his message again tomorrow at 12:30 on TBN. I also like Allen Jackson at 12 noon. Sending you mental energy. God bless you. Love, Jeanie :)



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  3. #512
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    Rose, Happy Easter to you and Jim. You are always in my prayers. Always in my thoughts and my admiration of the life and love you have. I hope your day is filled with laughter and music and of course love and hope. These are a couple of videos I posted to my facebook I thought you might enjoy.
    This is one I never ever tire of.https://www.youtube.com/watch?v=ywkN...dZh6DVCzDmx2-Q

    This is one that is just so appropriate, our rainbow connection right now is hope. "It'll All Be All Right"
    https://www.youtube.com/watch?v=4juz...FqFGGTX6xmbFyw

    This is just the most moving and emotional version of this song ever.https://www.youtube.com/watch?v=DNfM...jIQXeVZEzUwJgM
    Enjoy the music!
    Mary Grace
    Last edited by mg12061; 04-12-2020 at 03:25 AM.

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  5. #513
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    My dear Rose,
    Happy Easter - I loved your card. How on earth did you find time to send a card? I am so grateful for our friendship. I wish there was something I could do to help you especially with the plumbing. I think maybe you could ask John's advice? He is like your son after all and maybe he has an idea. I can't imagine how difficult tomorrow will be. I remember so vividly crying with you on the phone. It seems like yesterday. Well, today is Easter and HE IS RISEN - this gives hope for us all. It is a light in all this darkness.
    I am so sorry - I thought I had sent the photo of our (Nick's) virtual quiz night! Here it is - we had a GREAT time!!! Nick's pubnight.jpg We just got off a skype call with Natalie, her partner Alex and Nick - all on the line at the same time. We wished each other Happy Easter and had a lovely long chat. I talked earlier today with my sister who drove her husband to the hospital for his brain surgery which will be on Tuesday. We are all so worried and it's awful not being allowed to be with him. But he says that everyone there is so nice - the nurses are just lovely and the docs are the A team. It will be a 6 hour surgery and then ICU. We are all nervous and praying for no complications or infection post op.

    My dear, I hope today is a good day in your house and that you find a way forward with the plumbing leaks. What a worry on top of everything else.
    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. #514
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    Default Jonathan's First Angelversary


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

    THE VISITOR

    As dawn was breaking, I wandered to the kitchen to look out on the backyard. I spotted something on the deck, sitting in front of Jonathanís memory garden. I looked closer. There, facing Jonathanís garden, sat a cottontail bunny.

    In 5 minutes, the bunny didnít move. I had to go to the bathroom, and when I returned, the bunny had left. These bunnies are abundant around the golf course, but they rarely appear on our streets or in our yards. I only recall one other time, when we had a bunny visitor.

    Of course, I immediately recognized the bunny as a messenger for Jonathan and Michael, as I began the day of Jonís First Angelversary. Jim was sleeping at the time. When I told him later, he agreed that the bunny was sent by our boys.

    THE DISCOVERY

    After Jim woke up, I pulled him up in bed, cleaned him etc. He asked me for two slices of toast with marmalade. Two? He said he was hungry and thought he could eat two. He only ate one, so we agreed that from now on, I will give him one of anything, and if he wants more, I will make more. Wasting food is not a good thing, particularly during a pandemic.

    Since Jim was staying awake, I decided to make hay while the sun shined. I gathered up laundry, put it in the washer and got it started. I even managed to get it into the dryer. Still there, but at least itís done.

    Next, I decided to start working on cleaning out Jonís closet, so I can call the plumbers. In the garage, searching for boxes into which to put the closet contents, I inadvertently discovered Jimís glasses.

    They were on top of an old stereo, next to Jimís huge tool box. I remember now how that happened. Jim lost his breath on his way to Johnís car in January and came back up to the garage and sat down on the tool box. He must have taken off his glasses and left them on the stereo.

    I have looked everywhere for those glasses for nearly 3 months! How many times did I walk past them in the garage every single day and not see them? Oh my!

    ďThank you, Jonathan and Michael for this great Easter gift for your dad! Heíll be so pleased!Ē

    THE CLOSET AND THE FUTON BOX

    With Jim still awake, I began clearing out the closet, with the stuff on the floor first. I got a large trash bag, in which I placed all of the wet stuff. That included a box of nearly 100 10 cc syringes.

    I rested, then I unloaded the box next to the futon finally. I had to unload it, because one of the packages was medicine cups, and we used our last one today. I will use that box for closet contents.

    This isnít how I want to spend Jonathanís Angelversary, but these things need to be done, and I have to get started, when Jim avails me of the opportunity by being awake.

    Additionally, it keeps me occupied. Iím of no use to Jim or anyone, if I just sat here sobbing all day long. If I allowed myself to revisit this day a year ago, the trauma would be worse for me than just moving ahead with what needs to be done.

    As many grieving parents will attest, we never stop grieving. We just learn to live with our grief. Otherwise, we would be completely dysfunctional.

    CANDLES

    Jim returned to napping, so Iíve been quiet this afternoon. I lit candles in Michaelís and Jonís room, which is a sanctuary for us. I asked God to grant me strength, peace, and comfort to keep moving forward to care for Jim and our home.

    I asked Jonathan and Michael to watch over all of our loved ones and your loved ones. I thanked them for being our Angels, reminded them how much I adore and miss them. Silent tears flowing.

    Then I watched Rob Thomas performing at his home on YouTube. Jon and Michael loved Robís music, and heís 48, so heís their age. I cried and smiled.

    EASTER DINNER

    Jim and I discussed it this morning. He wanted a celebration roast, but it expired a couple of months ago. He'd settle for Gardein turkíy cutlets, which he always says, ďIíd forgotten how tasty these are,Ē when we have them. I havenít been able to find them for months, even pre-COVID-19. But I lucked out with my last order.

    We have an assortment of potatoes. And peas and carrots, and veggie gravy. Even if he only eats a few bites of each, it will be an actual ďmeal.Ē

    Those plans are out the window now. He woke up coughing until he vomited. Now, he's taken cough syrup and is going off to sleep again.


    EASTER AND PASSOVER BLESSINGS TO ALL!

    Thank you so much for your love, prayers, enduring friendship, advice, guidance and support. We love you and pray for you and your loved ones.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!

    Last edited by Earth Mother 2 Angels; 04-12-2020 at 05:02 PM.
    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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  9. #515
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    ((((((Hugs to All)))))) ~

    Jeanie ~

    Thank you for your prayers and blessings. We return them to you and your sons and loved ones. I hope you had a lovely Easter.

    Mary Grace ~

    Thank you for those videos. We are long time fans of Willie Nelson. I saw him in concert several times during the 70s and 80s. His son is equally gifted. Willie looked frail and old, but then he's 86 or so, and he's been on the road most of his life.

    And thank you for your prayers, and as always you and your family are in our prayers too. I hope you were able to enjoy the day "together" while apart. Did you connect virtually?

    Donna ~

    I love the photo of your virtual pub night, and it appears that Nick is in an actual pub! Clever lad, he is!

    And I'm so glad that you were able to connect with Natalie, Alex and Nick. We are praying steadfastly for your brother in law and sister and family. It has to be so hard for all of you not to be together right now. People complaining about not being able to socialize have no idea how difficult it is when a loved one is ill and you have to be separated from that loved one. We send you our love and prayers for strength and complete healing.

    As for the leaks, we have fantastic plumbers, who we trust implicitly and understand our situation. This is a big job. A Plumber's Job, which would be more than John could handle. He just had plumbers a few weeks ago for another leak in his house. If if weren't for COVID-19, John would be here in 5 minutes to help me do anything.

    It seems like yesterday to me too, Donna. Thank you for your love and friendship. We've sure been through a lot together all these years. And more to go ...

    Our love, prayers, and positive, healing energy to all and to your loved ones. Blessings to all ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  11. #516
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    Default A Difficult Day

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

    Sometime after midnight, I climbed into bed. Sometime before 3 a.m., Jim paged me. He felt like he was having a BM. We waited. False alarm. I pulled him up in the bed, changed his pad, and went back to bed.

    He has hiccups, reflux, heartburn, which wakes him up. At 4 a.m. I gave him a breathing treatment and baking soda water. At 5 a.m., we tried a Carr's water table cracker. Then, he took a Tums and finally fell asleep about 7:00 a.m.

    His SATS are good, around 93-94. He wanted O2 today, but I explained that if his SATS are above 90, O2 could be worse for him rather than helpful. Nancy told us this, which I already knew, but reminded Jim that she said it to him several times.

    He's dehydrating, so I gave him Body Armor for his electrolytes. He loves the "fruit punch", which is the flavor, but not the beverage itself. He didn't like the cranberry/blueberry juice I got for him, per Nancy's recommendation. Cranberry is too tart for his taste buds, I think. A ton of sugar in Body Armor. Of course, he likes it.

    He has not been taking Lasix, while on Keflex, because of the caution of using the two together. But his urine output has slowed down, and his left foot is a bit swollen. So, he's going to take 1/2 Lasix and Potassium this evening, or whenever he wakes up again.

    I think his gut is filled up again, and that is promoting the hiccups, heartburn and reflux. So, we need to get more fluid out of him.

    Why do we have to balance an antibiotic and a diuretic, when both are vitally necessary?!

    Just checked Jim. He woke up with hiccups. He's slid down in the bed again, but he doesn't want me to pull him up again. I gave him a Tums. Hiccups stopped, and he's back to sleep. Hasn't taken Lasix/Potassium. Nor even tasted the diced peaches or tea he requested. He's exhausted from many things, including lack of sleep.

    Per Jim's suggestion, we tried having him sit up on the side of the bed, using his ladder, then scooting up toward the head of the bed on his bum. He couldn't do it. We had quite a time getting him back on the bed, so that I could use the sheet to pull him up. Unfortunately, there are no other options.

    We have Jon's lift, but getting Jim into the sling could be very difficult. We always used it together to lift Jonathan. It really is a 2 person job for safety.

    I changed his wound care dressing today. The wound is a bit larger, probably from sheering, when I pull him up.

    I've tried elevating his legs, lowering his legs, and today, I tried a bolster at the foot of the bed to keep him up at the top of the bed. It didn't work, as he's slid down again.

    Jonathan stayed up in the bed better than Jim does. Perhaps that was his weight or lack of mobility. I don't know. But I would need someone here 24 hours a day to help me pull him up in bed whenever he needs it. That just isn't going to happen. I could put John in a haz mat suit, and he could visit late afternoon and help me, but that's not even putting a dent in it. The problem is that as soon as he's up in the bed, he's already slid down an inch or two. It is maddening.

    I intended to work on cleaning out Jon's closet today, but Jim's needs precluded me doing that. The only thing I removed was Jonathan's ER bag, with his meds, colostomy supplies, syringes, cups, masks, wipes ... I had it all ready to go last year. Another gaping hole in my heart.

    I brought the bins into the side yard, which I'm sure pleased our neighbors. I don't care what they may think. I'm doing the best I can. I challenge anyone of them to do what I've been doing for the last 50 years and now. Most of them are far younger than we are. And they wouldn't last a week.

    Then, I started throwing the accumulated trash bags into the bins. As I said before, our trash is just amazing in quantity.

    Oh, and I picked up Jim's Potassium, which he doesn't need right now, but it would be sent back if I didn't get it this morning. That's it. Just one drug, which he has plenty of right now.

    I had asked about delivery: fill out a form, give us your credit card #, it will be sent by US mail within 3-5 days.

    And, I ordered gloves, but the website had a "glitch," so I had to call in the order. I thought I'd better get that taken care of soon, if I have to wait for delivery.

    I also attempted to resolve a bank issue. Phone wait time: More than 40 minutes. Website: totally useless.

    Meanwhile, water keeps dripping into Jonathan's closet.

    Just checked Jim again. He's sleeping soundly with no hiccups.

    Edited to Add: I texted Nancy. She will be here at 1:00 tomorrow. I feel better, as I'm sure Jim will too, when he wakes up.

    On my break today, I watched John Krasinski's third episode of "Some Good News." He lifted my spirits and warmed my heart in the middle of a difficult day.

    Here are his 3 episodes on YouTube:

    https://www.youtube.com/results?sear...some+good+news

    Thank you all for your prayers, love, support, guidance, and walking beside us on this journey. We love you and pray for you and your loved ones. Be safe. Stay home. Be well. Use one of the many ways to connect with your friends, family, loved ones. We may have to socially distance, but we don't have to emotionally distance.

    Send Prayers Around the World!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Last edited by Earth Mother 2 Angels; 04-13-2020 at 05:18 PM.
    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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  13. #517
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    My dear Rose and Jim,
    Oh what a time. Did Nancy text? Did she come? I hope today is a better day, my dear. I am thinking of you. I am thinking of my brother in law too - he went into surgery this morning at 7:30am and there is no update yet. We are all on pins and needles - you know what that is like. But it is worse that no one in the family can in the hospital. Well, we will all persevere.

    To cheer you up, I will tell you what happened today - it is my 65th birthday (wow, I will now get an old age pension)! I got a surprise call on the computer from Nicholas and Natalie and then Jim came down the stairs dressed in his tuxedo serving 'high tea'! Jim and the kids gave me two birdhouses that a neighbour's young son made and my sister had mailed to me a beautiful water colour painting of our bay in Cat Island. Jim picked it up at the post office this morning. I am so blessed. I will send images in an email because the photo uploader isn't working here. Sending much love my dear - I hope Nancy was able to help! 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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  15. #518
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    Default Back To The Futon


    ((((((Donna)))))) ~

    What wonderful birthday surprises you received! And old age pension on top of them! I vaguely remember the age of 65 ~ times were much different then. I could actually stand up straight. I'm so happy that you had a lovely birthday, so well deserved!

    I've been keeping your brother in law and sister in prayer all day. By now, he should be in ICU, where I pray he is receiving the best care from loving health care providers. I can imagine how very difficult it is for you all not to be able to be with him, particularly your sister and niece. Many prayers on the way for all of you.

    BACK TO THE FUTON

    Nancy visited today thankfully. I don't know what we'd do without her. She is just awesome.

    Last night, Jim told me in no uncertain terms, "I'm not going to spend another night in Jon's bed. I want to go back to the futon. I just can't take this any longer."

    Okay ... I get it. The mattress isn't working properly like it did for Jonathan. It's bulging on the sides, and one side doesn't alternate. Even after John rearranged it, it didn't take long for it to go back to being out of alignment. After I pull Jim up in the bed, then get him all sorted and settled and upright, he's slid down several inches. Terribly frustrating and tiresome.

    At 6 this morning, I pulled Jim up with the bottom sheet, but I forgot to put the pump on static and 9, which makes the surface solid. I pulled my back out. Hot, searing pain. I know that I can't continue doing this without severe damage to my already damaged body. And again, as soon as I had him upright, he'd slid down.

    I went back to bed, put the heating pad on my back and prayed. At 7:00, Jim was fast asleep finally, and he slept until 12:30 this afternoon. I went upstairs, slathered on some Aspercreme, drank my orange juice and decaf, checked emails, tried to figure out how to fix our printer (looked it up at HP and followed instructions ... phone help is difficult to get now with the virus, as every business is running with a limited staff) but got nowhere. It keeps saying that there is a paper jam. Well, I followed every step of finding it, but there is no paper jam anywhere in the machine!

    I also went on line to solve the banking issue. And I did.

    Every half hour, I would check on Jim, do some quiet tidying around the house, take out trash (it's incredible, my friends, I'm telling you seriously, how much trash we have). Laundry is still in the dryer.

    The Big Move

    Nancy arrived about 2 p.m. I told her that Jim wanted to move back to the futon and his reasons, and she agreed that would be better for him and for me. For her age, Nancy is amazingly strong, so she was ready to roll up her sleeves and move Jim.

    Transportation for the move was provided by an old office chair on wheels, which is at our dining room table. Ruins the ambience, but I need it, because my back can't take sitting on the lovely, but hard, dining room chairs. I toss a throw over it, which doesn't help, but it looks better than the old chair.

    First, she wanted to look at his wound, so he rolled on his side. She removed the dressing, which I had just placed yesterday, and said, "Oh! It looks better! It looks good, Rose. You're doing a good job!"

    I shook my head smiling. "Nancy, do you remember Jonathan's rear end? This isn't my first rodeo, honey."

    She redressed the wound, then we rolled Jim onto his back and began the torturous journey to the futon. Jim was in so much pain. All over. Once he was sitting on the bed, he was dizzy, naturally. BP drops. So we waited, sitting on either side of him on the mattress, which might as well have been a bed of nails for Jim, comforting him.

    When Jim was ready, Nancy lifted him under his arms, and he landed on the office chair, which I was holding steady. Nancy took over piloting the chair, as I scurried along wanting to take over. I know the obstacles and the thresholds between rooms. It was a bumpy ride for Jim, but we made it to the futon.

    Once again, Nancy, who should be in the Senior Olympics, if there was one, lifted Jim off of the chair and onto the bed. But he was too close to the edge. So, I got a draw sheet, and Jim rolled from side to side so we could get it under him. On opposite sides of the bed, me being next to the windows which is really narrow, we used the draw sheet to pull him closer to the middle of the bed.

    While laying on his side, Jim needed to pee. Unfortunately, he peed on the sleeve of his shirt, which Nancy and I had just put on him, after we gave him a very quick bath and moisturizer while still sitting on the side of the mattress in Jon's room. So, we had to change that shirt, which was more struggle and pain for Jim.

    Pillows

    I had said that the wedge would be the best choice to keep Jim upright, but Jim didn't want it. So, I went with a fold over pillow, which we used for Jon's leg elevation and several other pillows. Nancy kept grabbing pillows from the chairs, and the ones we were using in Jon's room. Jim was being jostled about too much. And we were getting nowhere.

    Finally, I said, "That's enough! I'm getting the wedge!" And we made that work. Jim was upright and able to have his tea, Body Armor, Applesauce, and T/C for pain. He's sleeping now.

    Transferring

    Now, I have to gather all of the things in Jon's room, bring them out to the living room and find a place for everything.

    I will now return to our bedroom upstairs to sleep, so, when Jim pages me, I will have to run downstairs, instead of just roll out of the futon and into Jon's room.

    Improving the Futon

    Nancy suggested that I buy a memory foam egg crate mattress topper. I found several on Amazon, and one of them can be here by next Tuesday.

    She said that she would visit, help get Jim out of bed, so that she and I could put the topper on the bed and clean linens. I wanted to wash sheets this morning, but I didn't want the washing machine to disturb Jim's sleep. I hate to think about how long it has been since I changed the sheets on the futon or our bed upstairs. Laundry is always an urgent thing. Like towels, washcloths, clothes. And both beds are queen size with a heavy mattress, so changing sheets is a chore. Jim was always on the futon, so it was hard to find a time, when I could change the sheets.

    I found several memory foam egg crate mattress toppers on Amazon, most not deliverable until May 6. The best delivery date I found is next Tuesday.

    I did order a boomerang pillow, which might help to keep him more centered. I paid for delivery, and I hope it arrives by Friday.

    I may ask John to help us with this transfer, as he and I can work the lift. He'll wear a mask, gown and gloves, of course. We may just need his help. And, he truly wants to help us right now. He's made that really clear. "I miss you guys so much. And I feel so bad for you all alone. Please let me help if I can."

    Perhaps we could use the lift and put Jim in Jon's recliner, where he would be more comfortable. It is something to ponder.

    PAIN

    Seeing Jim in so much pain today hurt me to my soul. I'm going to chat with him tonight about taking morphine in lieu of T/C. Nancy has offered this to Jim several times, but he's said he was fine with T/C. I think we're past that now. And Nancy says that morphine actually helps with respiration.

    If Jim agrees, then I will contact Dr. K to ask for a prescription, which I'm certain he will provide. He's probably astonished that Jim is still living. Jim has a very strong will, but he's making comments now about "not being in any bed for much longer," and "I'm done."

    I applied Aspercreme to his legs and hips. He uses a heating pad. That used to be enough, but it isn't enough any longer.

    Nancy mentioned his THC capsules, and Jim said, "I keep forgetting about them." So, I'll make sure that he has all of his meds available to take instead of relying on him to take them.

    We have a pill organizer, but Jim became confused by it, so we scratched that.

    THE EMPTY ROOM

    Once again, Jonathan's room is empty. Upheaval, uprooting, dying. Just like the night Jim demanded to be in Jon's room, this day has been long, painful in many ways, and requiring much more work yet to be done.

    Also, now that Jim is no longer in Jon's room, I will be able to get on with clearing out the closet, getting closer to calling the plumbers. And Jim won't have to be in Jon's room, as they do the repairs.

    So, those are positives, which I culled from today's adventure.

    Jim and I couldn't sustain the effort involved in being on Jon's bed. The only other option was the futon. It's where we began. It will be where we finish.

    Nancy and I didn't have an opportunity today to talk about the emotional side of all of this transition. She had to get to the office to pick up supplies for her patients. But she knows. She can see and feel our pain.

    Years ago, Nancy told me that she loved everything about nursing, but she especially loved taking care of patients personal needs. Like bathing, grooming, repositioning, lifting, tending to wounds and pain. She is a first-class nurse, upon whom the agency depends for IVs, blood draws, infusions. But what most lifts her spirit is what she did for Jim and me today.

    Thank you all for your love, prayers, support, guidance, and enduring friendship. You are a blessing in our lives, and we give thanks for you. You and your loved ones are in our prayers. Blessings upon All ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  17. #519
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    Default Back to Jon's Bed Part 1

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

    When Jim woke up from his nap yesterday evening, he had slid down on the wedge and needed to be pulled up in the futon bed. I tried everything from every angle and side of the bed. I got his bed ladder from Jon's room. It didn't work on the futon. After 1 1/2 hours of both of us struggling, I sat down and began sobbing. Both of us were in horrid pain, exhausted, and scared.

    Jim told me to call John. When I told John the situation, he replied, "I'll be there in 10 minutes."

    JOHN'S MOM, ROSE

    At the door, I handed him a mask, gown, and gloves. Jim and I were also wearing masks. Together, John and I tried to find a way to get Jim up in the bed, which was also a great struggle for us, even as strong as John is. We succeeded eventually.

    John sat on the stairs, distancing himself from us, which is hilarious, because we were all on top of each other moving Jim. We chatted a little bit, then he left to go home. He called me out to the garage to talk to me.

    "I didn't want to text or call you, because I wanted to tell you this in person. I wasn't sure how it would affect Jimmy, so I'm telling you first. My mom passed away on March 10."

    John's mom, whose name is also Rose, has been a very dear friend of ours (along with John's dad, who passed in 2011) since 1996. They lived 2 doors down, and we spent many hours at each other's homes, sitting on the patio, sipping wine and talking and laughing non stop. Rose brought neighborhood parties to our street, either on the greenbelt or on the end of the cul de sac, where we all brought food to share. Her door was always open to welcome in friends.

    She adored her husband, her children and grandchildren. Her husband was a Marine, and she was an Army nurse stationed in Okinawa in the 1950s. A strong and determined woman, with a great sense of humor and down to Earth wisdom. She raised two incredibly wonderful children.

    We were fortunate to be embraced by this beautiful family as one of their own.

    I have not seen Rose, since she sold her house and moved to a small condo in walking distance from John's home. Then, her health declined, and she moved to assisted living, but she got worse, and with much searching, they found a residential care home with 5 other residents. They were all pleased with her care, and they all made sure they dropped in frequently.

    She was confused and clearly suffering with dementia. She had chronic UTIs, and that's what she succumbed to ~ a septic UTI. She required full care, no longer ambulatory.

    In my memory, I see her in the pool with her grandkids, walking the trails to keep fit, organizing neighborhood events, and hugging me in her living room every Christmas. I can hear her laughter, and I can feel her hugs and her tears when we both lost our loved ones. I remember zipping up her dress to attend her granddaughter's wedding. She looked gorgeous.

    I told John how sorry I am for his loss, as I wept. "If ever there was a time I wanted and needed to hug you, this is it. And I can't." So I touched his gowned arm with my gloved hand. "I'm hugging you so close right now, John. So close."

    He said that he is at peace with her passing, because she had no quality of life, and she made it to 80 years old, which was an accomplishment with all of her health problems and grieving for her husband. "She's with my dad now, where she belongs, and someday, we'll all be together again. This is how I see it. It's the same way I feel about Jonathan, when I miss him so much. He's with Michael, and someday, he'll be with Jim and then you. And someday we'll all be reunited. I look forward to that. This isn't the end. This is the end of this life, but it isn't the end of life."

    That was beautiful and made me want to hug him more.

    I told him that I'd tell Jim, and he'd be very sad, but he also understands, maybe better than we do that Rose is free now. Out of pain and no more suffering. We rejoice for her spirit.

    John left with our care package of 3 kinds of deli sliced organic chicken breast, two living lettuce containers, two boxes of nitrile gloves to use on the job, an assortment of 18 masks, and 3 cases of bottled water. He asked if we could spare the masks and gloves and wanted to make sure we have enough water for us. We have more than enough. I want to protect John, who is an essential employee, and who isn't getting proper safety gear from his employer.

    When I returned to Jim, he had slid down from where we'd placed him. Once again. I sat down and sobbed. I did everything I could, now just working on fumes for an hour, and I got him in a decent place so he could have fluids and some applesauce. Jim slept, but he woke in pain.

    I knew this would happen, if we moved to the futon. But Jim INSISTED he wanted to be there. Jim agreed that it wasn't a good idea. And, I told him that at least in Jon's bed I can pull him up with the bottom sheet. On the futon, I have nothing. And he can't elevate his head to drink or eat or breathe. "I'm texting John, asking him to come over tomorrow to realign the mattress and take off the side rail. Then, he will get you out of the futon and we'll put you in Jon's bed. It's the only option we have."

    It was worse for both of us as the night wore on, but I managed to sleep in Jon's recliner for 1 1/2 hours. When I got up, I could barely move. Jim went to sleep, and I went to bed for another 2 hours. Then, I had explosive diarrhea. This is usually a signal that my stress-o-meter is heading toward TILT. A body rash often follows.

    To Be Continued ...

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  19. #520
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    Default Back to Jon's Bed Part 2

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

    Making hay while the sun shines (meaning Jim is comfortable and sleeping in Jon's bed again).

    Jim was too far down in the futon bed to drink or eat, so I gave him water and Body Armor via a straw frequently. He was dehydrating quickly. He was in fierce pain on his right side, so I put the heating pad beneath him and tried to use the draw sheet to rearrange him. "John will be here at 2, and he's going to fix Jon's mattress, so you will be comfortable there again. And if it needs to be adjusted again, he'll come over, get you out of bed, fix it and get you back in. But for a few days, we should be good to go."

    John arrived at 2, gowned, masked and gloved, he greeted Jim. "Jimmy, I see you have slid down a long way, buddy. Well, I'm going to get Jon's bed up and running for you, and we'll get you in there and make you more comfortable. Just hang in there a little longer."

    I followed John into Jon's room, and we talked about the mattress bulging on the left side, when Jim wanted the side rail removed. The bolsters on this mattress are helpful, but they are problematic within the size of the bed frame. The bed and mattress are Invacare equipment, for which we paid privately.

    John worked diligently on aligning and retying the mattress to the bed frame. Then, he tackled the side rail. I was fetching tools for him, and Jim was telling me where his tools are located in the garage. Up and down and back and forth between John and Jim. I had tried to prepare, but there was so much that needed to be done.

    At one point, John went home to get his tools, and from now on, I recommend that he does that every time. Because Jim's tools are not organized, a task he long ago wanted to accomplish.

    Finally, the side rail off, the bed made, and we were off to get Jim off of the futon and onto the office chair. Jim was in so much pain, dizzy sitting up, weak, frail, skin and bones. John was so incredibly strong and gentle with Jim, asking him with every move, if Jim was okay. We took our time to allow Jim to rest and breathe. When we reached the thresholds, John lifted up the chair over them to avoid jostling Jim.

    Once at the bed, John lifted Jim out of the chair and onto the bed. Jim laid down, just wiped out and in so much pain, as John lifted Jim's legs onto the bed. I was comforting Jim with caresses and kisses through my mask. Holding him, wishing so much that this hadn't happened to us now.

    Jim said, "I should have listened to you, but I was so uncomfortable in Jon's bed."

    "I know, but now, John has fixed it, and it should be much more comfortable. So from this move, a good thing happened. John was able to fix the bed."

    Now, Jim can be upright and reach his bed tray to drink, take his meds, eat, etc.

    After John finished getting Jim in bed, he tackled removing the uplift toilet seat, which he had installed some months ago for Jim. I'm using the downstairs toilet now, because the upstairs toilet is leaking. So, when I sit on that uplifted toilet seat, my feet dangle about 4 inches off the floor. It hurts my back.

    So, John removed it and replaced it with the original toilet seat. "Try it out, Rose!" Perfect! Thank You!

    Our gown supply is down to one gown. I ordered 100 gowns from Amazon, due to arrive on Monday. John wants to come over everyday, but he has to wear a gown if he comes. I only have one gown left. And our masks will run out eventually, if he comes over everyday to help us.

    Timing is everything. And this is a rotten time for people like us, who are dealing with end of life dramas.

    John and his sister were planning a wonderful celebration of life service for their mom, and then the pandemic lock down occurred. No closure, no hugs, no sharing of memories. Believe me, I know. I get it.

    Last night, John asked me, "What about you, Rose? What are your plans after Jimmy joins Jonathan and Michael? You have a lot of life yet to live."

    I shook my head. "No, John. I'm a lot older physically than I am chronologically." I listed all of the things that need to be done to restore our home. "I need to get a will. I will be very busy. I don't want to travel, and who can now anyway?"

    "Do you want to sell your home and move?" he asked.

    "Only if I have to do that. No. This is where I raised my children, met and married Jim, spent the majority of my life. I fought very hard to keep our home. I don't want to leave. Someday, that may be necessary, and I'll depend upon you to find a good place for me. But not yet."

    I mused, "Maybe I'll finish writing my various books. Get them published, before I join Jonathan, Michael, and Jim. But I think I'll be very busy with dealing with all of the home improvements and legal details. We'll see. One thing at a time."

    For now, Jim is upright in Jon's bed and sleeping peacefully. That is the best it has been for days. I cling to this and give abundant thanks for John and Nancy.

    We love you all and keep you in our prayers. Be good to yourselves, be strong, be safe, and send prayers around the world.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Last edited by Moderator #5; 04-16-2020 at 08:33 PM. Reason: Updated the heading
    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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