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    Hi dear Rose.
    Jim and I are in Cat Island and settled peacefully. We've skyped with Nick and he is doing great - visits from an old high school helper and also from his uncle (my brother in law) to watch hockey. He went out on Saturday for a haircut and hot-towel shave which he loved. And of course last night the Super Bowl, so he's happy. How are you my dear? I really mean you. I wonder if your back is sore, if you are on the edge of tears. When I imagine you at home, I think of you trying and trying to keep going and keep looking for signs of discomfort or for ways of getting things done. I hope today was a good day.

    I went to the orphanage yesterday (children's home) and met all my little friends again. One of older kids has written a wonderful play which is to be performed on Feb. 14 and so I'm helping with direction and costumes, etc. It is so much - the title is "True Love Never Dies" and it's about a young couple who grow up and get married on the island. It's delightful.

    I send you lots of love and prayers that Jim manages an orgain shake and has no pain. 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

    Comment


      These Days ...

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

      Donna ~

      So good to hear from you! I'm glad that you and Jim are settled and that Nick is enjoying his life with those, who love and care for him. It's great that he is able to get out and about too.

      I hope that you will take a video of the play. I'd love to see it. I remember the video of you with the children (last year?), and they are so sweet and adorable. How wonderful for them to have you there to help guide their performances.

      JIM'S UPDATE

      Jim's last full meal was Shepherd's Pie on 1/29. After that meal, he began having frequent BMs, normal, not diarrhea, along with copious urination. To/from the bathroom continuously, which wore him out. Although he was releasing all of that, he still felt full.

      He had no appetite and could barely eat a few bites throughout the days/evenings. He was relying on apple juice and tea as his hydration, because the bottled water tastes awful to him. We go through this occasionally with the water, but this time he just didn’t want to drink it at all.

      Because he was peeing so much, he believed he could skip his Lasix. This is a mistake, of course, but I couldn’t persuade him to take it.

      Meanwhile, he was weak, losing weight, and felt like crud.

      The BMs slowed down, but Jim still was worried about eating more than his gut could handle. By yesterday morning, he was feeling a little better in his gut, so he ate a bowl of oatmeal and some applesauce. That went down well and settled nicely.

      Conference Time

      I told Jim that I wasn’t going to watch him wither away by making poor choices.

      I explained to him that he HAS to take Lasix to get rid of the excess fluid in his gut. It’s not optional. It’s necessary. No matter how much he is peeing, it isn’t enough to make a dent in the fluid without some help.

      I reminded him what Jon’s PT said, when he diagnosed Jon with “just water” and not lymphedema on his last visit 2 years ago. I asked the PT what we could do for Jon, and he answered, “Lasix.” Jon couldn’t take Lasix, because it triggered seizures, even with Potassium. Jim can take it, and it has helped him.

      On hydration, I reminded him when Jon’s urine was rust, and his liver function was over the top. Our family GP told me to “give him water, lots of it.” I always gave the boys juice with no added sugar. When they asked for a drink, they said, “Juice please.” What was absent from their diet, and much needed to process their seizure meds and help their bowels, was H20.

      To make it more palatable to Jon and Michael, I put a tablespoon or two of juice in the cup, then added the water. Like a watered down cocktail. They accepted it, drank it and called it “juice.”

      For Jim, I tried adding fresh squeezed lemon. That helped for a few hours, but he still wanted apple juice and tea. Next, I tried fresh squeezed orange in his water. Same outcome. Today, he asked if he could do as we did for our boys, put apple juice in with the water. He said, “I understand now how important it is to drink water, after you reminded me of Jonathan.” So that’s what we’re trying tonight.

      I also suggested that Jim start wearing his dentures to eat, because without them, he sucks in more air, which causes gas.

      He complained of heartburn, weakness in his legs, dizzy upon sitting up, a “blinding headache,” and I responded, “This is malnutrition and not enough hydration. We have to do something about this right now. Seriously. Right. Now.”

      Jim agreed, and he felt much better today, after we implemented these changes. I have been saying the same things to him for days, and he finally realized that I’m right. Imagine that?! I’ve only been a caregiver for 50+ years.


      CT/MRI

      Yesterday, we had a conversation about Jim's scans on Wednesday. Of course, he is weak from not eating properly (and cold, when the heater is at 80 degrees, and he has 3 blankets and a heating pad on).

      Jim said that he couldn't manage getting into/out of John's car, or walking down the driveway. He suggested an ambulance to take him to the hospital. I reminded him that he'd be on/off that gurney several times, and would be sitting in a chair waiting for his scans, not laying in a bed or recliner like his transfusion. He would have to climb up on and down from the scan table. When the tests were done, he would have to wait in a chair for the ambulance EMTs to arrive, then get up on the gurney and be unloaded by them onto his bed at home.

      "Honestly, honey, can you handle all of that?" I asked.

      "No. I can't."

      After that, Jim even suggested that maybe the EMTs could put him in a wheelchair rather than on a gurney to transport him. I explained, based upon my countless experiences with and in ambulances, that they aren't a wheelchair transport.

      Jim wants the scans to know what is going on inside of him, but he realizes that he just isn't physically able to tolerate all that is entailed in having them.

      We were expecting him to feel better and stronger after the transfusion, but the opposite has been the case.

      So, I called radiology and cancelled his scans appointment, and the woman to whom I spoke was so kind and understanding. She said she hoped Jim would feel better, and we'd be able to reschedule soon.

      I texted John, so that he can plan his day for Wednesday without concern for transporting Jim. I sent an email to Dr. K explaining what's been going on with Jim and that we cancelled the scans.

      I will call radiation oncology to discuss whether Dr. S wants to see Jim on 2/10, without scan results. I'm not sure at this moment, if Jim would be up to that visit, as simple as it is. I pray that he will be much stronger by then. But, I'm not a psychic or a miracle worker.

      Jim's vitals are excellent, and we're waiting on Dr. K to post his last blood draw results on 1/31. I received the snail mail copy of Jim's 1/18 results, and they were fine, except for his low Hemoglobin. We pray that is elevated now after the transfusion.

      Getting Closer

      These past few days have been frightening for both of us. I feared that Jim was failing, and I was helpless, if he didn’t listen to me and follow my guidance. I knew from experience that I had to reiterate everything until it all sank in for him.

      I joined him on his nest, and we snuggled and talked for a few hours. Tears, laughter, memories, and facing what awaits.

      Jim isn’t afraid of dying, because he knows he’ll be reunited with Jonathan and Michael and many other loved ones in Bliss. What worries him is leaving me. “I don’t want you to be alone. To go through the rest of your life alone.”

      Of course, I will be alone without him, and no one could replace our intimate and powerful connection and relationship. I will be alone in grieving for him, and for Jonathan and Michael. No one understands my grief the way Jim does.

      I remember Jim telling me that, on the morning Jonathan passed, one of the police officers was concerned about me, and he said to Jim, “She’s very distraught. Keep an eye on her.”

      Jim replied, “I always keep an eye on her. Always. But she is strong, and she will be all right.”

      I assured Jim that I will not be alone, because John made a commitment to me on Day One that he would be here for me and for Jim forever. I know John will take special care of me. I also have Nancy, who will always be by my side. And John’s entire family, who are just waiting to do something for us.

      Then, Jim committed to me that he would keep an eye on me, once he joins Jonathan and Michael. “The three of us will take care of you. I promise.”

      “Then, I won’t be alone. I’ll have my treasures, my angels, with me always.”

      TODAY

      I went to bed and slept for a few hours, then I checked on Jim several times. Naturally, I have a fear of waking up to find him gone. I stand beside him and count his respirations, while he sleeps.

      Jim woke up feeling better and ready to start over. He ate a big bowl of steel cut oatmeal and a tub of applesauce. This evening, he wants to tackle a fully loaded baked potato and possibly half of a veggie hot dog.

      He took Lasix and is drinking water. He is cheerful and upbeat.

      Nancy visited for a signature to recertify Jim’s home health nursing care, due every 60 days. Jim was sleeping, while Nancy and I chatted in the kitchen.

      I described all that had been occurring, and I asked her, “Is this cancer or Ascites? Or something else?”

      “Ascites,” she replied, and her expression changed. “it’s so common.”

      “Am I doing the right things for him? What else can I do?”

      “Yes, you are. Just keep doing what you’re doing and get him to eat whatever he wants and drink lots of water, take his Lasix. All that fluid is pressing on his organs. It’s painful. Up til now, he hasn’t had this discomfort, but now it’s time to make sure he takes Lasix and drinks water.”

      HOW AM I?

      Thank you so much for asking, Donna, but I don’t know quite how to respond.

      Will I be “strong and all right” after Jim joins Jonathan and Michael? I don’t know. My reason to be strong then will be to get everything in order with our home, our will, our legacy. That will be a huge project.

      In between doing all of that, there will be those times, and I know them well, when grief will overcome me. I won’t have Jim’s arms around me, or his loving, soothing, comforting wisdom and understanding to help me through a difficult passage. But, I know that I will feel Jim, Jonathan and Michael near me to give me the strength I need to do whatever needs to be done.

      And when all that needs to be done is done, I will welcome my opportunity to join Jim, Jonathan and Michael.

      Thank you, Donna, and all of our dear friends, for your love, prayers, and enveloping us in your thoughts and sending us healing energy. Jim asked me to thank you and tell you how much he appreciates your prayers and support. We are not alone. We will never be truly alone.

      Love & Light,



      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        Rose, all I can say is I am sorry things have gotten so hard for you and for Jim. We will continue with the prayers.

        So much of what Jim says to you are the things my husband said to me as far as not minding dying so much, that it was leaving me. Then he would talk about how I would be alone because I didn't have children or sisters. Then he would tell me I was too young to stay alone for the rest of my life.

        So, to some extent I can understand. Obviously, I cannot understand loosing a child. But loosing a much loved husband I can relate to. You will make it if that happens.
        There will be times when you might think you will not, but you will. You are pre-grieving just as I did. I can tell. You are in my thoughts.
        Last edited by Virginia; 02-04-2020, 08:28 PM.
        Virginia

        Comment


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

          Virginia ~

          Thank you for your prayers and for understanding what I'm experiencing now. I'm so very sorry you lost your beloved husband. He clearly adored you, as I know you adored him. I am pre-grieving, and I have been for some time. It's just more intense now. It is familiar territory to me now.

          Jim had a difficult night after taking Lasix for the first time in 2 days. He was on the toilet so frequently that his legs and bum were aching. When he urinated, he felt a stinging, which he's felt in the past occasionally. He passed a trace of blood, which he has also happened occasionally in the past. The stinging subsided.

          Fearing dehydration, I convinced Jim to drink more water. I also gave him Gatorade.

          I gave him a T/C and his steroids, and he fell asleep for a couple of hours. He was comfortable and had no pain, when he woke up. More fluids, and then he agreed to eat some applesauce, which I fed him. Eventually, he finished the tub, after he slept for another 2 hours.

          His SATS dropped to 86, so I started him on 1.5 liters of O2. He he didn't need a breathing treatment until late afternoon, upon returning to bed after going to the bathroom. His SATS were 96. We dropped the O2 to 1.0 liters, and he's maintaining SATS of 95-96. We'll do a trial wean later with hope that he won't need to continue on O2.

          He just requested and ate (on his own) a sloppy egg and 1/2 of a large baked potato, which I sauteed in ghee and a touch of butter. He didn't think he needed to put in his dentures, but I talked him into it, and he obliged. One word: "gas." Trying to mitigate that by having his dentures in after 2 weeks of not wearing them.

          His temperature has been normal all day. He's alert, talking with a strong voice, and we've watched two movies today, "The Caine Mutiny," and "The Apartment." It's Oscars Week on TMC.

          We also watched The Kansas City Chiefs Super Bowl victory parade this morning. I think half of Missouri turned out on the streets of Kansas City! School was cancelled for today, and I would imagine most of the businesses closed down with that massive crowd. It was so joyful and uplifting. No violence. Lots of music, dancing, cheering, and partying! That was good for us to see today.

          I spent all day in fervent prayer for Divine Guidance in caring for Jim. This morning I began preparing to take him to the ER, but I wanted to give him time to see if we could rectify his issues. As the day progressed, each thing we did resulted in improvement. When he said yes to applesauce this morning, I was so happy. When he told me that later he wanted fried potatoes and a sloppy egg, I was ecstatic. When he ate the entire plate of food, I was jubilant.

          When he held my hand and looked up at me this afternoon, thanking me for my care, reiterating that he doesn't know what he would do without me, and his lament that I have spent my entire life caregiving, and "it isn't fair to you," I cried.

          He said, "You've been shut in this house for so long taking care of Michael, Jonathan, and now me. It's not fair."

          "I haven't been shut in. Or 'tethered' to the house as our Toenail Team once said to me. This is my purpose in life. It's never a burden to me to care for you or our boys. It is a joy and a blessing. And, we weren't always sick. We had many good, wonderful, glorious moments together, all 4 of us. Even when we were isolated here in our home. We made the most of every moment we had, including in ICU. I haven't missed anything. I have gained everything from you and our boys. Everything. Unconditional, perfect love. Whatever is 'out there' can't compare to that magnificent gift."

          Jim squeezed my hand, "And that, my darling, is why I love you so much."

          This morning, as I was assessing Jim and working out what to do for him, he stopped me, and said, "You look so pretty this morning." I teased him and asked if he was delirious. He smiled, "No, I'm not. In this light, you just look so very pretty."

          The other day, I was joking about trying to find out who Jane Fonda's plastic surgeon is, and Jim said, "You're beautiful the way you are. Every nook and cranny, every gray hair, you earned. You are distinguished."

          Through the eyes of love, Jim sees me. And I see him.

          Jim said that he still wants the CT scan, at least. And he now wants to try having his gut drained again. So, we are working toward those goals.

          Thank you, Virginia, and all of our friends here, for your thoughts, love, prayers, and positive, healing energy for us. We love you, and we pray for you and your loved ones. We are so grateful for your continuing support.

          Love & Light,



          Rose
          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

          Comment


            Hi Rose,

            I'm glad Jim is doing better. Is it possible to sign Jim up for a wheelchair transport service like we have in my city if Jim ever needs it? Lots of cancer patients use it here. Would you consider getting Jim a catheter if getting up to pee just becomes too painful despite risks of infection and inactivity??
            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

            Comment


              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

              Comment


                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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                  Comment


                    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

                    Comment


                      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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                      Comment


                        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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                          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.
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                          Comment


                            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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                              :) 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 :)

                              Comment


                                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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