patty
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Lynnwood,
It sounds like hospice is trying a balancing act with "they are trying to keep her comfortable on oral pain meds right now until it gets closer to the very end."
Earlier, her other sister was saying that she was sleepy and confused. Maybe they are backing off a little bit so she can be less sleepy.
I'm just guessing.
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Madelyn thank you for the update. My heart aches for Patty.
Could you print out our messages since August 18 and mail a copy to her? She hasn't checked into BCO since then. I hope that Patty's sister would read the messages to her to bring her some comfort.
There are hundreds of us around the world who have followed Patty’s journey and admire her grace, courage and love for her family. We want her to know we are holding her close to our hearts. ❤️ ♥️ 💜
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I think printing out these messages and sending them is a great idea. Patty, we are all thinking of you and you are surrounded by love. I miss you here.
Octogirl0 -
I think even if a sister were able to creat their own I'd on bc.org acct and read from the patty thread.
Patty, I wish you sweet pain free dreams and am holding you close in my thoughts. I have a 16 and 13 year old. I know I'm not ready to leave them but I know you've given your boys a strong start in life. You have done your best and deserve some peace. With love...
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just my 2 sense regarding privacy issues and printing and/or reading from the Patty thread:
We all post to the topics on this forum with the expectation (perhaps misguided) or at least the implicit understanding amongst ourselves that the this was a place where we could vent, complain, and be completely open about our experience. We are often very vulnerable in our posts and say things that we know only our BCO “family” would understand. There may be posts that Patty wouldn’t want her family to read and posts we wouldn’t her family to read. I realize there is nothing we can do to truly protect our privacy on this forum, especially once we use our real names and include pictures of ourselves in our posts. Anyone can join this community and lurk and easily find info on us. However we don’t have to serve it up to anyone on a silver platter.
Just concerned about losing our safe space here
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Her sister mentioned sending cards, is there a way to find out the address of the hospice she is in?
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Aw geez.... I remember them trying to let up on my Mom's pain meds... I finally ran down to the nurses station crying, and told them "but it's alright if she goes to sleep, she is SCREAMING in pain now!" So they upped her morphine drip... Patty honey, just know that we will watch over you... wish I were there...
I know.... something about the "state" thinks this, and wants "this" but when there is no hope, just help our loved ones be comfortable, and pain free! Love you to the moon and back.... xoxo
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Mominator-Thanks for the update but it is so upsetting. Patty herself wrote on August 9 that the doctors gave her 2-3 weeks to live. Why then are they not doing whatever is needed to relieve her pain? I hope her sisters or someone can advocate for her b/c it is heartbreaking to think of her being in pain 24/7. I thought that was the one good thing about hospice-that they can and will manage pain. Prayers for Patty and her family. Lord have mercy upon her-may she be free from pain.
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Amen.
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How just plain effing heartbreaking. I hate this so much. She deserved better. We all do. So sad and empty anymore. I am not who I used to be. Evil cancer
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At this stage, you would think that they would do whatever it takes to make her comfortable and pain-free as much as possible. who cares how much you are being pumped with drugs as long as you're comfortable? Not like she's going to get addicted to anything! When my dad was 96, the doctor didn't want to prescribe Percocet because he was afraid dad would be come addicted to it. Really?? If the drugs help with the pain, so be it.
I am moved to tears, as I'm sure all of us are, at what she is now having to endure. I'll be praying in church this morning for the rest of her journey home to be pain-free.
Ann
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Hello all, a few more updates:
Basically, all of these concerns are the call of the Facebook post versus privacy concerns.
1. I checked with the moderators, and they said "it's best to leave out any identifiable information of both yours and Pattys as these forums are accessible for everyone to read, regardless of being a member or not."
2. (Chevyboy, Chicagoen, feelingfeline and others:) PAIN! I also have been communicating with two of Patty's sisters. The one that lives further away (7 hours) wrote the Facebook text, so I'm not so sure how up to date is the pain part. Remember, Patty was in a lot of pain before she went to hospice house. Since then, the closer sister has said that Patty was comfortable and sleepy. I asked the closer sister about her pain. I'm waiting to hear back.
3. (Molliefish:) I gave the closer sister the links to Patty's thread weeks ago. I'm trying to find out if anyone has read the messengers to Patty yet, or will do so now. I've heard no response about reading the thread, so maybe no one has done it yet, or maybe it's too complicated, or maybe no one has the time. Patty needs a lot of care. Maybe physical cards are easier than reading from a bulletin board. We shall see.
4. (DearLife and Octogirl:) I tried printing the messages. One page on the forum equals about 9 pages on my printer, and none of the photos come over. I think pages 118 on haven't been read by Patty. Maybe someone who is a computer wiz can print pictures with the text? Let me know. Again, I'm trying to find out if anyone there has read the messages to Patty.
5. (AnimalCrackers:) I understand your concerns about the privacy of Patty's posts and possibly not wanting her family to read them. I've been Patty's friend about 3 years now and can only remember the disappointment when the "love of her life" wanted a divorce. I think all her family probably already knows that. Maybe there were other discussions on other threads, maybe not. If any of us knows of such discussions or threads, best not to mention them now.
6. I'm going to church now. I play flute at two parishes, at 10:30 and 12:00 ET. I will say prayers and both churches and light candles at the second church. That may give us all time to digest this information, and maybe the sister will get back to me with some more information.
Madelyn
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Hi everyone...this is so sad. I know its none of my business but I don't understand why they can't keep her pain under control. Does it really matter if she sleeps at this point? She has had a lot of time to prepare for this horrible ending emotionally. Physical pain should be treated effectively no matter how much medication she needs! I think we would all want that if we were in her situation. We can all hope and pray but the reality is she needs pain control!!!!
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Thanks Mominator.... You really take on a lot... and it does help us, since we can't talk to her ourselves... You are doing all you can, so I'll just hang on, and wait for your posts... I think at this point Patty just wants to be left alone...
Hopefully the family will fight for her to be pain-free, and just let her be warm, and keep her covered... and just let her rest and sleep. It's like she is one of our own sisters... and it hurts us all to think we can't help....
Pretty Patty.... you are in my thoughts and prayers... Love you to the moon... xoxo
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Poor Patty. Pain control is utmost.
I understand the privacy issues. I wouldn't care to give my address via pm and forwArd cards but my concern would it get there in time? And if it did is she aware enough? I don't want to prolong her journey home. She needs peace and so does her family. Waiting is agonizing as we all know.
No I don't have her address.
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Well said Chevyboy. I can’t bare to think of her in pain suffering at all. 😪 precious patty we love you beautiful soul, friend, person, mother, angel... sleep....dream. ~M~
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I did a search and the last time anyone has checked in here under her name was August 18th. Thank you Mominator for keeping in touch with her family. I can NOT imagine why pain relief would not be THE most most important goal at this point. Sending much, much love and prayers for peace.
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I’m a nurse and have worked with hospice multiple times. Pain control and comfort of the patient is always top priority. There are multiple drugs, either orally, rectally, under the tongue or even gels that can be administered. That’s why I have been concerned about our friends pain relief. I would rather see a patient sleep then be in pain. This is my opinion and not a judgment as I have no idea what Pattys wishes or circumstances are. I continue to pray for adequate pain relief.0
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We sang this at church this morning sweet Patty was on my mind, on my heart and in my prayers.
Softly and tenderly Jesus is calling
Calling for you and for me
See on the portals He's waiting and watching
Watching for you and for meCome home, come home
Ye who are weary come home
Earnestly, tenderly Jesus is calling
Calling, "O sinner come home"O for the wonderful love He has promised
Promised for you and for me
Though we have sinned He has mercy and pardon
Pardon for you and for meCome home, come home
Come home, come home (come home)
Ye who are weary come home
Earnestly, tenderly Jesus is calling
Calling, "O sinner come home"
Ye who are weary come home
Earnestly, tenderly Jesus is callingCalling, "O sinner come home"
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I'm not a big Country afficionado, but Alan Jackson has two albums, Precious Memories I and Precious Memories II, and he does a wonderful rendition of the above song. It's on YouTube.
I may be stepping on toes, and I apologize in advance for possibly speaking out of turn, but have they stopped feeding Patty? When one is on their "last days" digesting food can also cause A LOT of pain because the body is breaking down and can no longer handle the extra load that processing food requires. It is NOT starving the patient! When pets are on their last legs, they instinctively stop eating because "they know." There is also "VSED," voluntarily stopping all eating AND drinking. I've done the research on this, and if one has fluids withdrawn, one will usually slip away in less than a week.
Our beloved, dearly treasured friend has been suffering LONG ENOUGH, but I don't know her wishes.
I have filed my Advanced Directive and DNR to include VSED, along with full palliative sedation when it's time for me to transition. Everyone has to make their own decisions and act according in these matters, and we can't tell anyone (including their close family members) what to do.
But it just breaks my heart! Patty should NOT have to be suffering like this....certainly not in 2018.
She went on Hospice over three weeks ago. I know God is in charge and He'll take her when He decides it's time, but it's just so painful for us to "virtually" watch her go through this miserable hell.
Keeping you in prayer, our sweet Patty Peppermint,
L
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I need to repeat point #2 above because some people may have missed this.
***** I really do NOT think that Patty is in pain at this point. *****
The last reports from the sister that lives closer was that Patty's pain was being controlled. That was back on August 21: "She is comfortable. Just bored, confused and sleeping a lot."
On August 25: "Patty is hanging in there, getting more tired and sleeping a lot now. I told her you are praying for her and ask about her. She said thank you."
I do not think that status suddenly has changed.
Reminder: the Facebook post is from the one that lives further away (7 hours).
***** I am now really, really sorry that I posted the Facebook post, because re-reading the text, especially reading everyone's reactions to the pain part, it seems very out of date. ***** Please see my notes (1) and (2).
[[Facebook UPDATE: on Patty. She is in a lot of pain 24/7 they are trying to keep her comfortable on oral pain meds (1) right now until it gets closer to the very end. The cancer has eaten a lot of her lower spine and is now working on her liver (2). She has to have help when getting out of bed. Our family is so great full for all of your thoughts and prayers for Patty. I will really appreciate it if y'all could take a minute or 2 and drop her a card just to let her know she is loved and thought of and is not alone in her walk as the end approaches. ]]
My observations:
1. Patty had a pain pump both while she was on hospice at home and when she went into the hospice house. So I don't understand the oral pain meds comment.2. Patty had said June 13 after her last scan that "Liver is totally encased in cancer." So the comment "now working on her liver" is very out of date.
Again, I am keeping in touch with the sister that lives closer. I believe that sister is with Patty. I know she reads my messages. Sometimes she responds. I think she is doing her best for Patty, which may or may not include answering my questions.
I am very sorry for posting the Facebook "update."
Lita, I will ask about VSED.
Madelyn
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mom don't be upset. You've been so generous sharing us with Pattys family. We know how hard it's been for her and you too. Thanks for keeping us in the loop.
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Madelyn - Don't you dare start beating yourself up over your post. You have been such a wonderful and supportive friend to Patty, and this obviously isn't easy for you. I think we all do (or should) appreciate that you are keeping us posted and Idon't think you have anything to apologize for.
Ann
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Mominator, thank you for all you do to communicate with Patty's family and to let us know updates. I honor you as the messenger. Praying every day that Patty is not in pain.
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Thank you Madelyn for all you are doing for Patty and for us. I am sure your heart aches too since she is such a special friend to you. We all want peace for Patty and I pray that hospice is ensuring her comfort.
Please don't worry about posting the news as you received it. This is a difficult time for everyone close to Patty, including all of her virtual sisters who would be by her side if we could.
Patty, if all your BCO sisters turned up, you would need to book the auditorium! ❤️♥️💜
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Mominator Thank you for updates on Patty. I am praying for her and I am sending some prayers and a hug to you. This is not easy for you. I appreciate you keeping us posted. My experience with hospice in the past was that they do everything to keep the patient as pain free as possible. Hootie Hoo, Patty. God bless your boys and keep you close.
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Here's a much better update on Patty, from closer sister:
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Patty is not in a lot of pain, she is on methadone and that is working for her, where nothing else was. She stays confused and can't remember but that's all the pain med over the years and the cancer and the toxins. She is retaining water but eating good. She does need help out of the bed, shower and etc. Patty does not talk to [[sister that lives further away]] and I don't either so I'm not sure where she gets her information. I live 7 hours away from my sister and going as often as I can to visit. I do speak to her a couple times a day on the phone when she feels like it. Thank you for checking and all the prayers, I do and have let her know that you ask about her and I do tell her about all the prayers for her.
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So now we know for sure, Patty is NOT in a lot of pain.
Patty is "eating good." I would presume that also means that Patty is feeling good. There was no mention of nausea, vomiting, or diarrhea. Many of us will remember how she suffered from many of those GI problems.
Also, not stated but implied, there isn't someone there constantly to read our messages from this thread.
Finally, I will take all statements from further away sister with a shaker-ful of salt.
Madelyn
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Madelyn - thank you for facilitating the updates. You are a gem. Patty certainly must feel all the outpouring love from the BCO sisters. With her closest sister 7 hours away, I don't think we need to tax her with reading all these posts. We'll leave it to you to determine about getting an address by PM to send cards. Thanks again for being such a good friend.
I was interested to read Lita's post about the VSED - although it sounds like Patty is still eating rather than having a feeding tube. I didn't know the term but will certainly be adding it to my documents. Hopefully Patty's sister is able to determine what Patty wants.
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without you darling we would know nothing. I thank you personally for putting yourself out there. I know you're friends with her and this has to be effecting you also greatly. I appreciate your kindness and willingness to share information that we desperately need because we all love her very much. Hugs to you special lady! ❤️ ~M~
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Madelyn, thank you SO MUCH for the updates. We all love Patty and I know she feels it.
Hootie Hoo GF. ♥♥♥
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