Discussion Board Forums Supportive, Palliative & Hospice Care Response to Alla’s posting

Viewing 15 posts - 46 through 60 (of 66 total)
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  • #65430
    tryingtohelp
    Member

    Thank you, Marion. Hubby is still confused, pretty much on a different reality. Talks about something that makes no sense or about something that is not happening.
    Sensitive
    Got new problem – bleeding either from rectum or pee, not sure. Discovered after he used bathroom. Called hospice and they contacted doctor – most likely from bowel obstruction. Nothing they can do… Part of a process, they say.
    Can’t wait for his son to get here, so we can evaluate the situation.

    #65429
    marions
    Moderator

    Alla…I so much hope for an easier night. You have so much on your shoulders yet, you are holding everything together for all. I am glad that Marty’s older son will be by your side tomorrow.
    Hugs and love,
    My heart is with you,
    Marion

    #65428
    tryingtohelp
    Member

    Thank you, Lainy
    Yes, nurse came and lowered the doze (it was 0.5 yesterday per hour, then 1.0, now 0.8). He was telling nurse about getting up early and feed the horses… We don’t have horses – he had some years ago in California. I gave him another Ativan, so hopefully he won’t start pulling the tubes out again.
    Talked to our 15 year old, cried together and hugged. Hopefully he will come to me to share what he feels. Got some booklets for him to read from hospice – about grieving for the loss of the parent.
    6 year old now acts like nothing ever changed. I’ve read in the booklet that it’s normal for kids 4-7 years old.
    It is easier that I shared this information with them. If only my hubby get back to the right mind!
    Found old baby monitor and will try to use it tonight. I’ll keep you posted!
    Thanks for the hug!

    #65427
    lainy
    Participant

    Oh, Alla, I am so very sorry to hear all of this. Did they lower his doses? I am heartbroken about your little boy. I am at a loss for words. Just know that I am with you in mind and spirit and if it was in my power to make everything better or go away I would! There is just so much love pouring out to you and I hope things calm down and improve as they find the right doses for your hubby. Sending you the biggest hug ever!

    #65426
    tryingtohelp
    Member

    He woke up tonight and gallucinating… Seeing bats flying, kids eating, not recognising the room he is in and worse – trying to pull pain pump tubing, getting agitated. Then talked to me about getting up early and painting. Scared me! He did know I was his wife, but everything else didn’t make sense. Gave him ativan to calm him down. Called hospice – I think doze is too much. Nurse is on the way…
    Told one of the kids 6 years old. He cried, then asked if he would have another new dad. What a fun night I’m having…

    #65425
    lainy
    Participant

    Alla, I think after you talk to the kids you will feel a big relief. That has to be the hardest thing to do. Teddy had a very high pain tolerance but it seemed that Hospice had a way of really nailing it down, they were really good in home. My mind is with you tonight! Be strong.

    #65424
    tryingtohelp
    Member

    Thank you, Lainy. I appreciate your kind words and wisdom. He is sleeping now and I’m trying to relax. When I asked about pain earlier, he said “no”, but moaned when tried to lay down. Not sure if I should trust his answers. Periodically he gives answers that make no sense, while other times answers fine. Got him bedside comode, hopefully it’d be easier for him to handle.
    Planning to talk to the kids tonight. Not looking forward to it…

    #65423
    lainy
    Participant

    SENSITIVE

    Alla, it’s all ok and will be ok. I just talked to Lynn and she is just about where you are. I believe that both your wonderful husbands are in their own peace as they prepare (I like to call it prepare). Everything will calm down once you get all your deliveries and people stop coming. Just a suggestion, as we got closer to the end I stopped all phone calls and instead made an e mail list at which time I updated family and friends every evening. I actually asked people not to call and they were all so good about it. So much easier than answering calls. I limited visitors to 2 at a time and for short visits. I felt more was too hard on Teddy and me and if someone wanted to see him they deserved to have the one on one visit. Hoping everything calms down for you tomorrow and you can concentrate on just your little family. Even if hubby is sleeping you might want to let the kids talk to him as he will hear them. I really understand your preparing as well because sometimes we just have to say, enough is enough. As for his wishes if he doesn’t let you know you do the best you can, no one can expect more.

    #65422
    tryingtohelp
    Member

    Sensitive!

    Thank you, Lainy
    It shocked me how much worse he got in one day, that’s why I’m hoping it’s meds. Yesterday he walked, took steps, walked to the bathroom, but today – confused, can’t carry on conversation, stares a lot. It took an hour to go to use a bathroom. On the way back we had to use wheelchair. I’m just surprised how quickly it changed. Is it possible to progress this quickly?
    And I did absolutly nothing that I planned for. Constant phone calls, people come and go, deliveries and the main part – taking care of my hubby. But I must admit – seeing him like this, I think will make it easier for me to let go. I don’t want him to suffer. I just wish he regains his wit enough to talk to the kids and tell them what he needs to say to them. And tell me his wishes, as I still don’t know!
    His older son is coming tomorrow and he is a PA, so hopefully he’ll help me with care and explain what is going on…

    #65421
    lainy
    Participant

    Alla, this is a difficult question. It could be progression it could be MEDs. You blew my mind when you mentioned the winking. Teddy always used to wink at me to let me know things were OK. As for the confusion Teddy never had that but he did start getting nightmares and they gave him Haledol (sp) which worked for that. Most important is the pain control and I am glad that is better. Make sure to mention all your concerns to Hospice when they come each time. I am here if you need me and will answer as much as I can.

    #65420
    tryingtohelp
    Member

    Thank you. Pain is a little better – nurse stopped by and increased the dosage on the pump and I got liquid morphine for the mouth. But he keeps spilling stuff from his urinal or missing it, confused at times… Scares me, when I ask him question and he just stares at me… A lot of times not answering at all. Not sure if it’s from meds or is he progressing sooner than I expected. He is sleeping now. I thought we’d be talking today about important documents, his wishes etc, but he can’t even carry on simple conversation about his pain level. Seems like he answers one time, not answer other at all, then fusses at me that I already asked the question – seems like in and out at times. Then he winked at me. I’m so confused! Yesterday his mind was fine.
    Let me know if you experienced something like that?

    #65419
    lainy
    Participant

    Alla, you are doing such an amazing job of taking care of Marty, hang in and be strong. I have one question, when ever Teddy needed drugs I NEVER had to run out to get a thing. They delivered daily to the house. Its an extra step you don’t need, that is if they deliver. Have you got anything left to give him in case the Morphine spray does not work or you run out. I had a little box of emergency things they gave me to keep in the Fridge. I hope Marty can have a pain free day.

    #65418
    tryingtohelp
    Member

    Thanks, ladies. Marty had a rough night. I woke up to check on him, he was in a lot of pain, saying pump is not working and asking how to hook it up. It was working for me. I guess he was in so much pain, he couldn’t think strait. Gave him last 20 mg oxicontin, 5 mg oxycodone and after a while he fell asleep. Called hospice to speed up the changes in pain meds… Dropped of prescription for morphine spray (prn). First they said they didnt have it, then found it. Will pick it up soon. Hope all will get resolved today… Frustrated!

    #65417
    marions
    Moderator

    Alla….great to know that you are home again. Alla, Percy posted a link which also addresses constipation:
    You will have to scroll half-way down.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=66520#p66520
    The article also refers to suppositories for those suffering from chronic constipation while bedridden.
    Is George laying flat or is there a specific position he feels most comfortable in?
    Alla…I sure hope that you both will be able to get some rest tonight.

    Hugs,
    Marion

    #65416
    lainy
    Participant

    Dearest Alla, I am so very glad you are both home and that Hospice has started. OMG, I was right about the Morph???? Yikes first time this year! LOL I just want to see them get your husband pain free or close to it! It is all strange but just give them the chance. Not sure who you will get we had quite a few different Nurses. Not to worry though as they look up in their computers to see what the others have noted. Once he is settled with all that he needs it runs like a well oiled machine. You are almost there. The Morph is binding so the Ducalax is a good idea. Do not be shy about asking for things or asking questions of Hospice, that is why they are there. Welcome home!

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