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Hi,


My ex was hospitalized for liver failure about a month ago. While he was hospitalized he told us his liver and possibly other organs were failing. That the doctor's suspected cancer and we're planning on doing a biopsy of his lung and liver. Since he has been released he has not told us much other than he had a nurse and therapist. He told us he would be seeing an oncologist a week or two after release now he is saying the 28th of this month. I am getting this really bad feeling he is waiting on some dreaded cancer diagnosis and possibly ignoring his liver failure.


Since he has been out he has progressively gotten worse. Yesterday I visited him without our son because I wanted to hopefully get some information out of him about his health. His brothers and I are worried but don't know what to do for him. When I got there he told me he has been weak for two days. He said just getting to the door is an effort. I asked him a lot of questions and am so confused. He said no the doctor has not mentioned ammonia levels or anything about clotting. I asked him if the doctor mentioned a Meld score and he says no. I asked him if he was getting enough to eat and I think he said sometime yes and sometimes no. I asked him if he is able to get groceries and I think he was trying to say he could get by another day or two but as much as I keep stressing to him he needs to ask for help I am thinking he won't. I am sorely tempted to check his fridge the next time I am there. Earlier this week he told me they were trying to force him on oxygen and yesterday he tells me he doesn't need it yet. I asked about his nurse and he told me she isn't coming anymore because of insurance. I am really confused on this as well. He had sent our son a text on Wednesday saying not to come visit because his nurse was coming. I know he has not been able to do laundry, take out trash and on Monday he was unable to change light bulbs in his bathroom. These were light bulbs over the bathroom mirror so not too high but he still couldn't do it. I ended up changing those light bulbs for him and taking out his trash that day. Yesterday he seemed to be in the same shorts he was wearing on Monday. Since I know he hasn't been able to laundry I am thinking he is possibly just reusing dirty clothes. When he had gotten out of the hospital he was upset he had to wear dirty underwear for 8 days but he is not really complaining about his laundry. I told him if he can get quarters I would come and do his laundry but if he stays this weak I am not sure that will happen. I am broke otherwise I would just go get the quarters and go do his laundry.


Yesterday I noticed these spots on his face that looked like bruises or hickeys. On Monday his ascites and edema had looked like it was worse.


Would it be wrong for me to Snoop while there so his brothers and I have more information? I have seen stuff from the hospital. I want to respect his privacy but I am not really sure he is entirely with us anymore. Our son is scared we are going to show and Dad will be dead. At this stage I can't offer assurances that will not happen. My gut says if he keeps going downhill this way that my son probably only has so much time left with him. One of his brother's wants to know if he has a living will or whether he wants to he buried or cremated. At this stage I am not sure if we could get him to talk about this stuff. He actually was mad at one brother for thinking he is dying.


Oh one of his brothers has been trying to call for a week and when I asked him about it he said he had called him two days ago.


Really not sure what I am asking here but if anyone has any insights or ideas that might help. I am trying to be as supportive as I can for our sons sake but I feel like I am flying blind.


Thanks.


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Barbi, I am so sorry for your loss and I certainly understand how difficult it must be trying to do the best you can for an ex while trying to know what to tell your son. Find counseling for yourself and especially your son. I lost my dad at 12 years old, it is very hard and my folks were divorced too. I did not want to talk about anything that may have upset my mom and counseling would have helped, given me a safe outlet. Too much was held inside that still rears its ugly head occasionally.
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Barbi, I am so sorry to hear that. My thoughts and prayers are with you and your Son right now, I know how difficult this will be for him! You were so good to check up on him as you did, for the sake of your friendship and for you Son. I'm sure it left a good impression on your Son, that you tried to get his Dad some help there in the end.

Stay strong and keep coming back here for support, strength and guidance as you proceed. So many of us have dealt with divorce, single parenting and tough situations such as yours.

As a Mom of 2, whose Dad also passed away during their formative years, do remember that you can go to SS to receive support benifits for your child, and it would might also be a good idea for you and your Son to get into some grief counseling in the near future. You 2 take Care! Again, so sorry for your loss!
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Hi
I wanted to thank everyone for answering. I had a really bad feeling since last night. When I could not get my ex to respond to the phone or to me knocking on the door I called in a welfare check. They think he probably passed sometime last night. Trying to find comfort in he did not seem to know he was dying. I am hoping he let go peacefully.
Barbi
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FrazzledMama Sep 16, 2018
Barbi, I am so very sorry for your loss. My prayers are with you and your son. You did the very best you could and I know he must've appreciated you greatly, even though he was private about his illness. Grief support for you and your son will be helpful in the coming days, weeks and months. Hugs, take care of you, and come back here whenever you need to talk too. There is wonderful support here as well for those who are grieving the loss of their loved ones.
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Can you call the nurse line at the hospital where he was, and explain the situation and that he was recently discharged? They won't be able to give you any info, but they will probably know who his doctors are and can maybe relay that information to them. They might also be able to give you ideas and tell you what they would recommend in the situation. They might be able to email a release form that you could print off and take it to him to see if he'd sign. Would he be willing to let you help him if you tell him it's for his son, that he is worried about him?

If he's in a fog and weak, it could very well be his ammonia levels. At some point it sounds like he is going to need palliative care or hospice. If he is still weak or getting worse next time you see him, you might tell him you and son are worried about him and ask if he'll let you call the ambulance. The hospital can run further tests, and can help get him set up with palliative or hospice care if needed.
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The doctors can't talk to you but you can sure talk to them and let them know what the situation is and what you have observed. Giving them info doesn't violate HIPPA at all. You are doing all you can. He is very fortunate that you are so willing to help. Blessings to you and your son.
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lis probably not thinking straight. Ammonia levels that go too high cause brain "fog" for lack of a term that makes sense.

If he has cancer AND a liver failure, there is not much that can be done, mostly palliative care, and even a discussion about Hospice Care.

The MELD score is the score you "receive" as you move up the line in waiting for a transplant of any organ. However, he will be taken off any transplant list if he is too sick.

Without the HIIPAA documents stating you can be a part of his care team, you can't do much.

It is good of you to do what you can--I would also probably be a part of my hubby's EOL care, should we ever split up. He's already been through Primary Liver Cancer, HePC and a liver transplant. I can tell you, the DO NOT do transplants on the reg--he has to be relatively healthy.

Sounds like your son needs to talk to dad and get his approval to help him.
IN the meantime, you can arrange for MOW and maybe some kind of charitable organization that can help him. Is he a member of a church that could-help him out? Is there a neighbor or close friend?

Sounds like he is supremely depressed. Anyone would be.

I'd do whatever I could possibly do to help him that he'd allow, but since you are exes, he's possibly going to not want you involved.

Do what he'll allow. It is won't solve the health issues, but a clean apartment clean clothes and some food in the fridge makes huge difference in a person't outlook.

He sounds very lonely and scared. So sorry.
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Devastatedmom Sep 15, 2018
Hi,
Our son is barely going to be 11 in November so I think my son's uncle's really need to come and talk to him. I am not sure I am doing doing a good job of conveying how serious I think this is.
I guess a fog seems like a good way of describing how he is right now. I had sent him a text earlier yesterday about coming to visit by myself. About 40 minutes after I left the visit he responded to the text and said, "Okay I am resting."
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Maybe, I'm just too direct, because, I think that I might just ask him if he has his signed POA, HCPOA and Advance Medical Directive. I mean, now is the time that he should be handing the original over to whoever he has designated. He's obviously ill and needs help or will very soon. A person who is thinking clearly, would know this. If he refuses or doesn't have one, I'd suggest he get one. If he still resists, I'm not sure what your options are.

People who are competent, can refuse medical treatment and suffer, if they choose. I suppose there is a chance that he is not thinking clearly and that he has some kind of cognitive decline or depression. Bad news could have brought on the depression. The physical ailments you saw sound concerning.

Since, you are no longer related to him, it may be his brothers' place to intervene, if that's what you decide to do.

Without a release, I'm not sure his doctors can communicate with you, unless he has signed for it.

How old is he?
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Devastatedmom Sep 15, 2018
Hi,
He is 59. I wish I could be that direct with him. Unfortunately if he does not like what I have to say he can get unreasonably angry. Granted he is pretty weak but our son has already expressed a fear of this to me since I need to take him to visit Dad so I am trying to avoid doing anything that could set him off.
I really wish his brothers would intervene. I think he is going to need them.
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It sounds like you are right to be concerned. Would he be willing to sign a HIPPA release form so you could talk to his doctors?
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Devastatedmom Sep 15, 2018
I am not really sure. I was trying to get at that with his yesterday. If not me one of his brothers but I think he said I don't know. A couple of times when I asked him questions involving his brothers he said, "Back bad." I have thought if I could figure out who his doctors are maybe I can at the very least call and ask if they think a family member needs to step in? I don't know if that would violate Hippa. Or maybe I could say what I see and just in general ask what should I do.
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