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T2Logan

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    Greenville, NC

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  1. I've struggled with anxiety all my life but was able to get it under control naturally except in certain panic situations, which became rare. This past week, the numbness from my mom passing has faded and my anxiety has definitely returned. It's constant now from a low level "hum" to downright panic I couldn't leave my house. The small things are now causing major panic when they wouldn't phase me weeks ago. I can't sleep now without Xanax and now I'm only able to sleep the time Xanax is in my system and I wake back up 2 hours later from nightmares and/or panic and have to take more. I think it's very understandable after loss and many experience anxiety for the first time, or being amplified if you already struggle. I'm changing meds up personally after seeing my dr this week to work on reducing my baseline anxiety. I haven't read through comments, but do you try or know of relaxation techniques, scents, or sounds you could try?
  2. Thank you everyone for your kind words. It seems so long ago, but yesterday at the same time. It's been 2 weeks and still doesn't seem real, even at the visitation. I can logically *know* as you can see I'm able to discuss it, but emotionally I'm still pretty much... Numb? If I do feel anything, it's deep depression or anger. I also noticed my capacity to handle the number of work tasks has greatly diminished and I get overwhelmed.
  3. I'm so sorry for your loss. My mother also passed away May 5. I'm having trouble sleeping and feeling this is "real." I'm not sure I have the right words at the moment but I wanted to let you know you aren't alone here.
  4. I'm sorry if this is disjointed, but I wanted to get it out. Apparently my grief at this time is showing through physical symptoms. Emotionally I don't feel....anything. I believe i am numb right now still since it has only been 4 days since I was with her when she passed. Yesterday was Mother's Day and my thoughts were racing with projects to do so I did a lot of cleaning and yard work. This was my mind's way of avoiding. There are times my mind starts going back to certain images of her last days and moments as well as hearing the sounds but I'm doing my best to avoid that as well. I got slight overriding anxiety as I sat at the computer tonight, but it went away and I eventually fell asleep. However, I'm up again because I was jolted awake in a full blown panic attack. I'm used to anxiety, but I have not had a panic attack this intense ever, I'm physically trying not to get sick my stomach is so clenched. I am still trying to fully calm down after 2 xanax (usually 1 works). In my sleep I heard a noise associated with my mom, yet somehow I was conscious enough to be aware this noise wasn't possible and that's how I woke up....it's hard to explain and I've never had something like that happen before. Then again, I've also never lost a parent before so this is all new! Aside from the panic of what would once have been a very simple nose I wouldn't have thought twice about....emotionally I still feel nothing aside from the anxiety/panic. I also noticed I cannot watch House at this time. That's one of my favorite shows! However, there was one episode the patient had liver failure and another where they had hemachromatosis, both of which contributed to my mom's passing. I would never have thought that would cause me anxiety but it did. I don't feel sad, upset, anger....just nothing. My grief is coming out physically though through anxiety/panic, constant headaches/migraines, extremely tense muscles, i'm now getting a cough and soar throat (immune system shot?), heartburn, etc. I have a terrible time with identifying emotions in the first place on a normal day, so I feel this will be a long tough road. Tonight I did some work and sent an email to a few colleagues and they were very supportive saying I need to be here for my family (my dad), but honestly, working keeps me busy and helps me avoid, but I don't want to tell them that. I also don't want them to think i'm cold? I can't explain it. Everyone deals differently I realize....and for me I don't know where the line of "coping with a healthy distraction vs completely avoiding/ignoring" is. If anyone has any advice at all I guess, I would appreciate it. I can only imaging this will become more difficult as time goes on.
  5. I posted in the specific grief of a parent section, but I wanted to say here that my mom passed way this morning. Thank you to those that were reading/commenting/sharing kind words throughout the past few weeks. I'm sorry I'm short on words at the moment.
  6. My mom passed away at 10 this morning on the dot. My dad happened to be out at the store, I was laying next to her. She was listening to a playlist I made and had her favorite TV show on. I strongly feel she waited for my dad to be out of the house. These past 8 weeks seemed so long, but looking back now that it's over, feel like it went so quickly. I don't really have words at the moment. I'm kind of numb, but taking charge and making/receiving phone calls that need to be made. Now I'm kind of laying here thinking "now what??" When you go from caretaker, constant anxiety and anticipation waiting for "the moment" to...it's over, you're at a loss. I'm just laying here watching Netflix and have a stress headache that won't go away. I'm not sure what else I can do at this moment. I will have a lot to process within the next few weeks I'm sure. I will say that she always said she wanted us to celebrate her life rather than mourn her death. Today is Cinco de Mayo so perhaps that isn't coincidence, I don't know.
  7. Rylee, I know this will be a very difficult time, but please do your best to take care of yourself when you can even if it is something small such as a snack like a banana, an extra hour (attempted) of sleep, cat naps if you can, maybe take a walk to reflect and have some alone time if that's how you process things. We're here for you.
  8. I know i had an original post that I was updating, but I wanted to create something separate for the moment. I need "someone" to vent to at the moment and feel entirely alone. I can't sleep, even with anxiety meds. Please be aware I will be sharing some symptoms she is displaying...I just wanted to warn you first for those that may be bothered. I'm currently sitting near my mom just listening to her breathe, the apnea, the sounds that are associated towards the end. I don't know if I'll be able to forget that, or her facial expression, the glaze in her eyes looking through me if they open at all, seeing her when she rallied sooo incredibly confused, combative, upset, crying, not understanding where she was, and I could barely understand her words because she was so slurry. I knew making the decision to come back up that I may face this and figured "no, I can remember her how she was" but I feel it'll take time to change the image in my head now. I'm sitting here starting to regret getting frustrated during that moment. It was the last time I saw her awake. I did not show my frustration at all outwardly, but inside I felt so helpless because I couldn't comfort her. The frustration was at the situation, not her, but I still feel guilt and it's increasing by the minute. I went to lunch with a friend and during that time she got up once more and my dad interacted with her and she was not combative at that time. When I returned she was once again asleep and has been since. I do not mean this to sound selfish in any way, but this is a very individual experience. Being by her side almost 24/7 except the moments I need to run out for a quick break, I'm here through it all, assisting, watching, listening, waiting. I'm not sure my sister would be able to relate to this part of the experience, or even my father. I don't know if I'd be able to talk to them about it or even verbalize it. I have obviously not even really begun to process things so I hope that made some sort of sense. My dad is heartbroken and can barely be around it hurts him so much to see his wife of 30+ years passing. Everyone grieves differently so I do not fault him for that by any means, but this makes the care giving towards the end fall on me. Previously my sister was able to help out when my mom was alert and able to walk for the most part, etc. but she lives out of state and it was difficult for her to remain away and take care of her children as well. Again, I completely understand the circumstances! I happen to be the one that lives the closest (5 hr drive). We have aids 24/7, but they even need assistance moving her/rolling her, and cannot dispense meds so I have to do that, and make certain calls regarding how much/which ones. She's now only on ativan and morphine slowly given so she doesn't choke due to not being able to swallow. Another thought that keeps trying to pop in my head, despite consensus, and directions from the hospice nurse, is since I'm in charge of dispensing the meds is "I am the one that'll kill her." I logically KNOW this is not the case and the illness is what is to blame, but I don't always listen to my logic. Again, I'm sure I'm probably not alone in these thoughts, but it hurts already. I never thought I'd be doing this for my mother at 28. It has been a whirlwind I guess 8 weeks now. In the beginning her MELD score for 3 month mortality was 80% or so, and that now seems to be correct. She made it to her birthday, which we didn't think she would. She had so many ups and downs we thought she'd pass, but NEVER down like this and for 3 days at this point with the symptoms described above. We are nearing the end within a few days I feel and I really am at a loss of what to think/feel. I'm keeping her lips moist, giving her the meds, putting on burts bees lip balm, letting her listen to her favorite TV show (Golden Girls) and a playlist of her favorite songs, making sure she has her bear with her, and doing what I can to make her comfortable. Hospice came today and washed her body and hair completely so in that regards she looks pretty good. 8 weeks ago I gave her a teddy bear when this began. She named him Hospital Bear and has had him in her arms constantly. She'd get upset if he was moved to re position her, had "safe" people hold him when she was able to get to the restroom so her bear was safe, and got hysterical when he was lost. About 2 weeks ago she changed his name to Burial Bear, which indicated she knew and accepted what was going on. I've spoken to her softly telling her i love her, that she will be missed, but that we will be ok. She is not passing peacefully and even hospice has indicated this has been a difficult passing that he has seen. I'm not sure what she's waiting for as far as closure, but I just want her to be in peace. She and I have made amends (that's an entirely separate issue I need to process within this entire situation), but I know throughout this entire time she's been deeply worried for my dad when she leaves. She may be waiting for him to tell her he'll be ok, but I don't know if he'll be able to do this or how I could encourage him to assure her. The past few days she has been unconscious he has been cuddling with her or sitting and talking to her more and as he can. Part of my anticipatory grief comes in the final moment. When that occurs...what will happen? How will i actually react? How will my dad react? etc. I know the home aids will contact hospice and do that end of things, but I just don't know what to expect and my anxiety is rising. Did I mention, Mother's day is in 4 days so it'll be extremely close timing, which ....will make Mothers day extra difficult for me and my sister just due to the anniversary date likely being around this time as well. I think that was all I had for the moment. Thank you for listening.
  9. Thank you Kayc and Marty T. She was asleep for 1.5 days, up 30 min and combative, and has been asleep and unresponsive for another 1.5 days. She obviously is not eating/drinking and her breathing has changed with the apnea and pauses. Her nurse came yesterday and we have moved to not asking if she wants food/liquids because it is now a choking hazard since she cannot swallow, but of course we'd provide them if she indicates she wants them. At this point, if her eyes open at all they're half way, glazed over, and not looking at you, more through you. She isn't there. We're now just slowly giving her morphine and Ativan to keep her calm and comfortable, and turning her every few hours. I feel it'll be within the next day or so. I believe the aids call hospice at the time and then they get the process going, but I will be calling my sister. She has already said she will take it from there regarding calling all of my mom's sisters. Once she became unresponsive we couldn't get her to her bedroom so we set up a bed level with her hospital bed for my dad to lay with her. Tonight, however, he's so distraught. He's convinced she won't know he's there or hear him. I tried to assure him that she can sense his presence and will still hear him. He just walked away and went into his room. I have this very strong feeling that I will lose them both very quickly back to back. I ended up creating a playlist of some of her favorite songs and put an earbud in her ear so she could listen to them this afternoon. I plan to do this again tonight. I'm not quite sure where to go from here and I'm more in a waiting/anxious stage.
  10. I suppose I should update. It's been a long 6 weeks. The doctors estimated at the end of February she had 6 - 9 weeks left. I've been up to help, back home, then back up to help again. Each time another family member (my sister or my mothers') were there as well. I came up a third time last Monday night. They didn't think she'd make it, but once I arrived she rallied once again. It's been a long few days. Every day here feels like a week and it's a time warp. Whenever she was awake she was cranky. I understand why because her personality is an "in charge and in control" type and she insists she can do things, but she really can't. She doesn't like the help. My dad hired aids 24/7 to assist, however, I still came up. There were numerous times the aids still needed extra assistance so I'm glad I came. Coming back up was a decision I felt i had to do, despite how difficult it may be. Anyway, yesterday she was up maybe an hour total all day. When she was awake she was fully awake, cranky/yelling, confused from the ammonia, but able to semi-stand up with assistance to use the bedside commode, but otherwise slept. Today she has slept pretty much ALL day and is only half way awake for 2 min at a time where she'll make noise, look at you, but then go right back to sleep. She cannot get up and will not move unless the aids turn her over. She's on liquid ativan and morphine but i'm only giving them to her as needed. She's slept all day so only got one dose in the AM and one in the PM. I figure if she isn't awake, I'm not going to wake her up and possibly agitate her to just giver her a dose of some meds. At first she could not suck from a straw she was that weak, but now she can no longer swallow even liquids. We're trying to sponge her lips and put on lip balm, and squirt some liquids in her mouth with a syringe, but if she isn't swallowing it's not doing much good. She's had maybe 12 bites of applesauce the past 2 days. Lack of input = lack of output so I'm not sure if things inside are shutting down at this point or not. She's had one dose of lactulose today but that didn't have any impact on anything (if you know what I mean) and I could not get her to have a dose tonight. Her respiration rate is low and she alternates between snoring and congestion, but we don't think it's the "death rattle"...though her hospice nurse hasn't been here since Thursday. He should come tomorrow I believe. Yesterday I could have said it was a "down" day because she tends to bounce back up, but I'm not sure now. Lack of food/water indicates things and would make her worse in general due to dehydration. I'm trying to hold on strong for my father who's falling apart, but watching the aid today help my mom started to get to me. I don't want her to pass, but she no longer should be in this pain. She has stated she's spoken to her parents and my dad's parents, that they're "waiting for her" and last week "dead people are all around me trying to pull me in." Last week she was highly agitated and crying hysterically a lot when she started talking of these things. Due to the reason being her liver, we don't know if these visions were due to ammonia build up or part of the dying process. I'm not sure what to think at the moment. I think we'll know within a day or two which direction this will turn. A lack of liquid consumption could make things go downhill quick. I don't want her to die, but I don't want her to suffer anymore. Her mind is split and the intellectual part is still in there and is highly embarrassed, ashamed, etc. about being incapable of anything, but she makes no sense at all with words, if anything but mumbles come out. I feel so bad for her and I just don't want her to be in this pain, mental or physical. She needs to be with her parents. The home aids were saying no to her snuggling with my father in their bed. She asked for 3 days and would start balling when she was told no. We had what seemed like a new aid every shift that I hadn't met before. I finally stumbled upon one that said yes and allowed us to wheel her from one room with the hospital bed to her bedroom, and we let my parents snuggle for hours last night. Today since she is unable to move at all, we set up a trundle bed next to her hospital bed and my dad slept on that and held her as he could. The aid that said yes was like "Hospice is about comfort care. what more can we do for her? If she wants to snuggle with her husband, we need to let her! There's nothing more we can really do for her, we need to allow her this." I'm grateful she allowed this, especially the day before she could not longer move. As I said, i'm trying to stay strong as my dad is falling apart. He's speaking of his death, how I'll lose both of them, that he can't live without her, etc. I'm terrified I'll lose them both in quick succession and I'm not sure i can handle that, honestly. I'm going to work on getting him support, but he is against counseling, group therapy, etc. and living out of state there isn't much I can do. I can't force him, just provide information. I'm done rambling for now. I feel the end is near and a whirl wind is about to ensue. I'm not sure what to expect after she passes (within minutes/hours). I've never witnessed this type of situation and I'm afraid of what I may see. I'll have to make the call to hospice when she passes and likely to all her local friends. ::deep breath:: I'll update within the next few days.
  11. Rylee - I am in a similar spot with my mother at the moment as well. She's gone up and down but each "down" is lower than the last and each "up" is never as good as before. She's on a downward trend and i can relate a lot to what you have said. She has slept most of the past 2 days and can't swallow often at all. She's fading quickly. Like you I wish she was just out of pain and suffering, yet she's hanging on for some reason. I don't want to lose my mother, but I don't want her to stay like this either. She will not improve so her quality of life is tremendously hindered. I'm at a loss of what to do as well. I'm not sure what else to add, but I wanted to offer some words of comfort that you are not alone in this moment.
  12. Well, I got to visit my mother. My dad called and said he thought it was time so I drove up and my sister flew in. It was a rough patch but she made it through that night and we helped implement some things to get her a bit stronger. She wasn't sure who I was the entire time (alternated between calling me her grandchildren, my cousins, etc) but at least I got to see her and talk to her when she was lucid enough. While i was there she had her Last Rites done and she said she felt better (i guess emotionally). I drove back home last Sunday while my sister remained an extra few days. We were trying to get a home health/live in nurse set up but that's proving more difficult than we thought! In the mean time, my sister has gone back to her house and one of my mom's sister came in yesterday to help. She also had an emergency appointment with her local doctor. Her labs are either remaining the same or getting worse. She went to ER today and has been admitted to the hospital. Her white cell count has skyrocketed and they can't figure out why. They tested the ascites and that isn't infected so that's good at least. However, her kidneys may not be functioning or it's a UTI. They haven't determined either way. So we're up in the air again not knowing the kidney issue or what's causing her cell count to go up. Her sodium is critically low and the way to fix that is reduce fluid intake, but to keep her organs functioning she needs more fluid so it's a catch 22 situation. We're still trying to set up help, but now we're discussing hospice. My sister and father discussed possibly going to a hospice facility, which I know is the last thing my mom would want. She'll be in the hospital with a potential to be released Monday as they slowly hydrate her. Tomorrow is Easter and her favorite holiday. It's sad she'll be in the hospital for the holiday, but at least she's here for it, right? My boss suggested i take advantage of the free employee counseling. There weren't any things signaling i need it, but he takes really good care of his employees and wants them to be ok. He suggests people take advantages of these services when dealing with loss, divorce, etc. so I think i'll contact them next week to set things up.
  13. She saw the doctor today. Her bilirubin has climbed to 35, she's sleeping a lot again, he smelled ammonia on her breath, and told her to get her affairs in order. I'm at a loss of words at the moment. I'm very unsure how to feel. I'm oddly numb and a big mix of emotions I can't untangle. It's weird.
  14. I hope it's ok to kind of journal progress or what is going on in this post. If I need to create another one please let me know and I'd be happy to do so. This past Tuesday she went to one doctor and her bilirubin was 26. Friday she had another appointment to check in with the blind clinical trial. Her bilirubin went to 31 and potassium almost critically low. She is now disqualified from the clinical trial so that option is now off the table as well. She gets blood drawn tomorrow and then another doc appointment to the specialist Friday. Her local doctor would prefer she go to that hospital and specialist in case she needs to be readmitted. It is considered the best as far as liver treatment in the state. I guess we take it a day at a time, but it doesn't seem to be improving. She's either maintaining at bad or declining. I'm kind of on edge waiting for her liver to completely crash one minute or her kidney function start to fail. I kind of feel helpless like a fish flopping out of water. Concentrating at work is very difficult and I have honestly fallen behind on many tasks. I know they're being understanding, but I hope they don't get frustrated as I try to catch up at home. My job is not one you can exactly fall behind on certain things! I'm doing the best I can though. I personally am seeing a counselor so we have switched tactics/topics to help regarding grief counseling. Luckily that is also one of her specialties!
  15. Thank you everyone for your kind words. KayC - I am sorry to hear you're having to fight cirrhosis as well. It sounds as if you'er on the correct path and doing what you can to help you stay as healthy as you can with the disease. That is certainly a key component and something that can be controlled! Her choosing not to see me is her form of denial and not wanting to face who I am (which doesn't agree with her views in life). It's still a mix of emotions and thoughts. I'd like to say goodbye, but honestly, with liver failure I'm kind of worried about seeing her this way as the last picture in my mind, if that makes sense. I saw her 3 years ago when she was jaundiced, swollen, etc. and as far as I am aware she has only gotten worse. That may sound selfish of me to feel that way, but I'm sure, or at least hope, I'm not the only one to think these things when a loved one is dying. I have not had an opportunity to speak to her doctor personally, but my father and sister have. Thank you for the hospital chaplain idea though. I never would have thought of that. Down the road I hope to remember to ask for one. I'm doing my best to only think of today and my mom's situation and not my dad's, though it's hard to see him trying to hold it together all by himself hours away. He panicked this past weekend and said I may want to come up and he doesn't know how long she has left, then later said no don't come until it's critical because he "doesn't want to mess [my] life up anymore with this..." Regarding punching a wall I think I'm going to buy a punching bag. I just need to remember to do so. I have a horrible memory and stress is only making it worse. I'm sorry to hear about the situation you were put in with your mother as well. It can certainly be tough when your parents react that way. Thank you for your reassurance though stating that I've done everything I could. Logically I know this, but brains aren't always logical, especially with grief and all the complications surrounding this personal situation for me. I too think that yes, my mom will be at peace as well, but...it's hard to watch the process. MartyT - Thank you for the links. I'm going to take the time to look into them more in depth. It helps to know I'm not alone in these type of thoughts and feelings, but sometimes I still feel really messed up for dealing with things before it even happens. In the long run I hope it helps me process things though I suppose. Beckyndane - I'm very sorry to hear that your dad is also dealing with ESLD as well. I've never heard of nutritional blindness occurring. Would you be able to explain that? I agree that the label "anticipatory grief" certainly helps! My mom is currently on lactulose as well, but shes still constantly confused, dosen't have a good memory, and doing odd behaviors. For example, the other day she woke my dad up at 2AM saying she lost her pills....that she was just crushing in the pill crusher. He had to find them again the next day sitting right next to her. She's also throwing temper tantrums regarding things like wanting my dad to get an ice cream cone rather than have some from a tub so he had to go run and get one. I'm assuming that is part of the ammonia build up? My mom is also on xifaxan, 2 diuretics, potassium (it kept decreasing dangerously), and many other meds. I too hope I'm able to see her and say goodbye and my peace before the time comes, but with ESLD and her complications it could be any moment. She's oddly chipper from what her sisters have said, and called them names she hasn't used since childhood....to me that's very odd and gives me a bad feeling.
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