The DU Lounge
Related: Culture Forums, Support ForumsCame Home To Find Todd Bleeding All
over the bathroom from his nose and mouth, which is a sign of kidney failure according to docs. He is lying down now. He refuses to go back to ER. I don't blame him. All they do is give some fluids and refer him out. They won't admit him.
I have been helping him with his posts on other sites and checked in on Facebook, tagged dozens of his so-called friends to message him, cause I thought that would get his spirits up to talk to them.
1 Like. Zero messages. I loathe Facebook. I don't want him to be logging in and see nobody cared. Should I just delete the post before he sees it?
I spend a good amount of time crying. It isn't just that he is sick. He is sad. Sorry to vent to strangers just nobody else to talk to.
CanonRay
(14,036 posts)that is a lot for you to deal with.
50 Shades Of Blue
(9,771 posts)tblue37
(64,979 posts)Mrs. Claw
(74 posts)they took a part of it which weakened him, and we think the spots have come back. But all they want to do is active surveillance which I think is another way of saying there is nothing they can do.
Chemo apparently does not work well with renal cell carcinoma, so I am told. He also has an ascending aortic anuerysm an arrythmia, and an ulcer. I think he is just worn down and ready to let go. But I don't want him to quit. He is only 44.
I love this pic.
ms liberty
(8,478 posts)tblue37
(64,979 posts)I am so sorry you and your husband are going through this. You absolutely should not feel bad about seeking understanding and comfort on DU.
tblue37
(64,979 posts)MustLoveBeagles
(11,563 posts)I'm sorry the both you are going through this. Hugs to you both. As for the Facebook post I would delete it before he sees it.
.
wnylib
(21,146 posts)that it might come to that. I went through this 9 years ago with my mother when her kidneys failed. Although she was much older (90), she was mentally active and alert, unwilling to accept what was happening. To make it worse, she was in Florida and I am in NY. My brother lived down the street from her and took over looking after her medical care.
I went to Florida while she was hospitalized and to help with her care.
When the hospital would no longer keep her, she tried a nursing home, but the care was substandard, so she went into hospice. They took excellent care of her and she was as happy there as she could be under the circumstances. She learned there to accept and make peace with what was happening. She really benefited physically and psychologically from being around compassionate people who understood how she felt, made her physically as comfortable as possible, and listened when she needed to talk. My brother benefited, too, from hospice staff who prepared him on what to expect at different stages and listened to his concerns.
It's a very difficult thing to face, and must be much harder for someone so young. But if the doctors can't do anything more for him, you could try contacting a hospice center to ask what care he needs and whether they can give it.
radical noodle
(7,990 posts)and often gives extra quality time because there tends to be a period of thriving after entering hospice care. The folks at hospice really know how to make their patients feel better even if they can't get well.
wnylib
(21,146 posts)I had to go back to NY, but called her every day. My brother and his children and grandchildren visited her. She never learned to use a cell phone, but had a wireless landline in her room. When she was too weak to hold it, the staff held it for her when I called. They gave me updates on her condition. It really worked out well for her, giving her the physical comfort and peace of mind that she needed.
karin_sj
(805 posts)He's very handsome and his kindness shines through. I'm so sorry you're both going through this and that the friends on Facebook haven't responded. That is hurtful and sad.
One thing good about Facebook though, is that there are so many support groups for just about every illness that you can imagine. I've joined a couple of them over the years: for Lewy Body Disease on my dad's behalf, Macular Degeneration and Glaucoma lists for my mom, and several others for my own health issues. I know that Facebook has rightfully gotten a lot of criticism for many reasons, but I've gotten so much wonderful support and practical advice from very kind and knowledgable strangers who are going to similar challenges. You might consider checking it out.
questionseverything
(9,631 posts)DFW
(54,050 posts)Isnt there a friend or a relative physically nearby? It would be sad indeed if the two of you are all alone in the world. If thats your case, there's no need to apologize here. Id probably be ranting somewhere, too!
sinkingfeeling
(51,275 posts)skylucy
(3,734 posts)and not see an end to it. I hope things get better for you both. Sending healing vibes and hugs your way.
Scrivener7
(50,773 posts)Is there anyone who can help you with this? A visiting nurse service?
2Gingersnaps
(1,000 posts)consider hospice. Keep him at home if you are able. My husband survived his first round at 27, but the radiation that saved him then caused it to come back with a vengeance at 50. I went to school for nursing when my kids were going off to college, so I had worked in the medical field. I loathe our system. My husband died with dignity in our home surrounded by people who loved him. It is a loathsome disease. No one deserves that.
snowybirdie
(5,190 posts)A hug and well wishes. You do have friends here!
AngryOldDem
(14,061 posts)Dan
(3,524 posts)Delete the post on Facebook before he sees it.
Take care.
Mrs. Claw
(74 posts)The question is why? You know, I found that I have had amazing life long friends that once I add to Facebook, they just ghost me.
I don't get it.
orleans
(33,986 posts)just b/c people are on fb doesn't mean they are always on fb.
also, fb seems to decide what to show people in their timeline scroll.
several years ago i went down my timeline and saw the same repeated posts by a select group of friends. but when i went on their fb pages i found there were over twenty newer posts by one friend that fb wasn't showing me on my time line, 10 from someone else, etc & etc. so now i randomly check their fb pages just to catch up.
even if you message them on fb--they might not check in over the weekend. or for a week or more.
if you have some phone numbers you might want to give a few people a call & let them know he would appreciate hearing from them.
summer_in_TX
(2,680 posts)is catching up with it
I generally go to post something for the LWV (Im comm director right now). But I dont linger, and usually dont look at my timeline.
I got even more disgusted with them during the insurrection. I already was someone willing to be completely off Facebook except for the organizations pages I manage or help manage because of the disinformation they do too little about. That translates into me keeping my account, but not checking my own page for comments or reading the timeline except once in a very long while.
Id be surprised if that has not become a pattern for many of us on there.
Once in a while Ill check my daughters-in-laws pages for pictures of my grandchildren. So I missed the personal stuff that Facebook community should be good for.
orleans
(33,986 posts)but she posts pictures and little videos of her baby on a website called family album. (you can't see other people's pics--and you have to be invited to see photos by the person who starts the account--and i think it's free).
so every time she adds a photo i get an email letting me know about it with a link.
maybe your dil could check that out for you
summer_in_TX
(2,680 posts)They're on FB just a bit, but the other dil are on a lot.
I'm the comm director for a couple of nonprofits so have used it as a publicity tool quite a bit. I'd like to see Congress set some regs myself.
XanaDUer2
(10,327 posts)nobody wished me a happy birthday on fb, and it really hurt. You two don't need that.
I'm so sorry. P M me if you need to talk.
orleans
(33,986 posts)XanaDUer2
(10,327 posts)MissB
(15,800 posts)XanaDUer2
(10,327 posts)barbtries
(28,702 posts)On my 50th birthday nobody called. Three siblings, 2 sons, friends, not a word. I'd just lost my job and was curled up on the couch on my 50th birthday and utterly forgotten.
i tend to remind people these days. and fb alerts them.
XanaDUer2
(10,327 posts)I put up a pathetic post saying it was my birthday. Got sisters and bf. Thing is, I always wish everyone a happy birthday. I'm kinda over fb for these things.
XanaDUer2
(10,327 posts)I put up a pathetic post saying it was my birthday. Got sisters and bf. Thing is, I always wish everyone a happy birthday. I'm kinda over fb for these things.
barbtries
(28,702 posts)i just gently remind my children that it occurs on the 26th of August, August 26, every year...lol
XanaDUer2
(10,327 posts)two years ago, I got a bunch of happy birthday wishes.
Again, sorry that happened at a low point in your life. We're all too caught up nowadays in ourselves
barbtries
(28,702 posts)apparently there is a little tinge of bitterness left behind as i have never forgotten it.
i mean i thought 50th birthdays called for major surprise parties, right? oh, well
LakeArenal
(28,713 posts)UpInArms
(51,252 posts)that you and Todd are having such a rough road
My virtual arms are holding both of you tightly and I wish there was more I could do
know that you are both dear and loved
pandr32
(11,446 posts)It must be so hard to cope and try to keep Todd comforted. People can be so heartless.
We are here and care. Please keep us informed.
Sending Aloha.
Mme. Defarge
(7,981 posts)from a distance.
soldierant
(6,647 posts)Anyone who has read any of Todd's posts doesn't think of him as a stranger, and I'm sure that goes for you too.
I just (over Memorial Day weekend) lost a good friend to cancer, and I know it hurts. Sending you prayers.
OverBurn
(935 posts)catbyte
(34,169 posts)Both of you are in my thoughts.
ancianita
(35,812 posts)japple
(9,773 posts)Health? They usually have social workers in addition to nurses and nursing assistants.
bluestarone
(16,720 posts)Hospice is amazing. Please try to get some help!
DemUnleashed
(633 posts)I am so sorry for what you both are going through. I think you should delete the FB post. He doesn't need emotional hurt on top of physical hurt. It's a good thing that you had the wherewithal to even think about deleting the post. Big, warm hugs to you both!!
sprinkleeninow
(20,133 posts)NewEnglandAutumn
(184 posts)My husband passed away this week. When I saw how sad he was it broke my heart.
niyad
(112,432 posts)femmedem
(8,187 posts)How good of you to reach out to offer comfort and sympathy when you are mourning your husband.
Fla Dem
(23,347 posts)I cant imagine going through what Todd is facing at such a young age. Are there any sisters or brothers, either of your Mom or Dads that could be with you during these tough times, if even just to talk? Sending you a virtual hug.
marble falls
(56,358 posts)... his privilege or an associate's hospital privilege.
I have lost contact with people over my last eight years of fighting cancer. It hurts, but I also know that my kids and my friends are afraid of having to confront my "mortality".
My kids remember roughhousing with the "old man", and now I'm a delicate brittle old man, my friends begin to see me a mirror of issues they may not have but might well start for the at any time.
Don't wait for a reply to email, call and explicitly invite a friend or two for iced tea when your husband feels comfortable to sit in the lazy boy. It is possible they felt they might be intruding at a bad time.
Prayers do work.
calimary
(80,693 posts)Would it help if some of us messaged you for your Facebook page?
I know it might be awkward to just post the link out in the open here, but maybe a few of us could post some cheery messages. We could just say were YOUR friends but wanted to send him some good vibes too.
niyad
(112,432 posts)Sendig vibes for strength and comfort and healing. There is much sound advice on this thread. Hope you can find some answers.
FailureToCommunicate
(13,989 posts)titanicdave
(429 posts)....very best friend and my one and only brother to cancer........so I know what you are going through.....you and Todd have my prayers and good vibes all the way........I agree, Facebook is a worthless POS for sure.....may God Bless Todd, you, and your entire family at this troubling time......
TygrBright
(20,733 posts)You are not alone.
It's a hard, hard time and a painful challenge. You don't have to face it alone. We can at least be here with you.
I'm holding you in my heart.
Stay strong for each other, we will stay strong with you.
lovingly,
Bright
MyMission
(1,845 posts)I understand him not wanting to go to the ER.
Is there another hospital in the area?
12 years ago my mother wasn't feeling well. Brought her to the local ER where she had worked as an RN years before. They sent her home, no diagnosis. Several days later we returned, and they actually lied about her evaluation, said she had a bladder infection when they had not tested her urine, and sent her home. A few days later she asked a friend to drive her back to the ER. The friend called me, and I brought her to a different hospital 15 minutes away. They admitted her with pancreatitis!
It was diagnosed with an enzyme test that the first hospital should have done. She was there for 6 days, got excellent care and recovered.
As a result, I switched her MD's to ones affiliated with that hospital.
Best decision I made, as her new doctor was competent, caring and involved.
And many years ago mom had a friend who had cancer and was being treated by an MD who wasn't giving her the best care. My mother told her to find another doctor. She did, and survived.
My thoughts and prayers are with you and your husband.
I agree, delete the FB post.
Reach out to any real friends and family by phone, text or email.
raging moderate
(4,281 posts)You both sound so brave! Of course you are sad! Of course you are crying! And of course you have the right to vent about it! We will all be thinking of you and Todd, and your brave struggle against this filthy cancer! You are both part of a vast company of heroes, doing your best to stand against the forces of evil! Whatever you manage to do, you are both admirable!
FailureToCommunicate
(13,989 posts)many her know a bit of what you and he are going thru.
I lost my younger brother to "pancreatic cancer", but it was not really that but kidney failure that brought him down.
It didn't have to be. It was just that the docs were so focused on experimental treatments, that the kidney issue got missed.
There is hope. Stay focused, and know that we are pulling for him...and you.
FakeNoose
(32,338 posts)We have a lot of expertise here on DU, medical people, caring friends. We're on your side. Please take advantage of us, and know that we care for you and your husband.
Prayers for you and Todd! Sending healing vibes and hoping for the best. Make good use of the help that is offered because we are your friends who care.
Maraya1969
(22,441 posts)For you both I wish peace in this difficult time.
EndlessWire
(6,373 posts)I don't blame him for not wanting to bother going back. When I cared for my mother, I had to take her to be treated in the ER. The docs asked me what I wanted done. I told them everything necessary. They then sent other docs to ask me the same questions, I guess hoping I would say, "nothing." I remember quite clearly how reluctant they were to treat her, even after admitting her for treatment. She was not even in extremis. They just didn't want to bother with her.
And yet, if you have a loved one die at home without being under a doctor's care, you will be investigated as a homicide, even as you stand there crying. As much as it hurts, you need a doctor's order for DNR (do not resuscitate) for your refrig door, and for your records. Then, you can either call an ambulance, or have an easier time if he passes while you are not aware of it. So, you need an attending physician, and the order with the doctor's name on it. Then, he'll pass under a doc's care, which is what you need.
Poor guy. Everyone has done something worthwhile with their life. It was not an empty time. Maybe he smiled everyday. Maybe he pet the dog when the dog needed it. He drew out love from you. Creating love strands is extremely valuable. Sending out prayers for you and yours.
GeoWilliam750
(2,519 posts)And my best wishes that he has a full and speedy recovery.
LiberalLoner
(9,761 posts)TuxedoKat
(3,818 posts)I cant find it. Want to help. So sorry about his illness and your situation. Hope all improves soon.
Mrs. Claw
(74 posts)Alice Kramden
(2,157 posts)KnR for visibility
femmedem
(8,187 posts)You need people to talk with other than Todd, even if it is an online community.
If I could send you strength and peace and rest through the internet, I would. All I know how to do is to tell you that I'm sorry that you and Todd have been dealt such a hard hand.
Lulu KC
(2,547 posts)My mother was "in hospice" for three years before her death, in her home. I used to think of it as a service you requested when you were within days of departure, but it's no longer like that at all. In the meantime, no matter how long, they make sure the person is comfortable and relieve a lot of pressure from the caregiver.
They would offer you comfort as well as Todd. They are very well trained on the signs of how much longer we will have our loved ones and can help us with that transition.
I am so sorry to hear this. Wishing the best to you--
2Gingersnaps
(1,000 posts)I am so glad reading through here that Mrs. Claw is getting this advise from so many caring people. Hospice will help her as much as Todd. As someone who worked in the medical field, and who had this service when my husband died, this is medicine as it is meant to be. True compassionate care for the patient AND family.
Stuart G
(38,359 posts)BlueSky3
(496 posts)were DU, and Ill be sending comforting energy your way. This has to be so hard to bear.
MLAA
(17,163 posts)💕💕💕💕💖💖💖💖💞💞💞💕💕💕💕
Sienna86
(2,147 posts)I apologize if I have missed other posts on this. The social worker at your local hospital or your doctors office should be able to assist.
Hekate
(90,189 posts)barbtries
(28,702 posts)don't delete. we care here. Keep including your links because there is a lot that can be missed - posts come and go, rise and fall like nobody's business.
Niagara
(7,403 posts)radical noodle
(7,990 posts)Much love going out to both of you.
riverbendviewgal
(4,251 posts)Moostache
(9,895 posts)Duncanpup
(12,716 posts)Goddessartist
(1,710 posts)I'm so sorry. Message me if you like. I care. I wanted to subscribe to his DC post but I haven't been able to work for over a year now. I'd love to talk to you. If'n you want, I'd love to give you my phone #. 206 735 6904
Kali
(54,990 posts)self delete and sent to the OP in a private message