jjj111

Spalding, I really feel for you. I have dealt with a few elder relatives in declining health over the years--my mother, my father, and my great uncle. In all of those cases, they eventually required more care than any one person could provide. My father was cared for at home by hospice in the months before he passed, but that was made possible by the fact that he had a girlfriend who was a trained nurse. In the cases of my Mom and Uncle, they both spent years in "assisted living", and my Uncle eventually also had hospice care in the assisted living facility. I guess I'm just thinking that at some point this is going to be too much for you. I'm wondering how your studies are going? It's a huge burden for you to handle this by yourself. Is your father any help? Does he realize how bad her health is? Have you tried calling a social worker? Sometimes they can help you figure out how to make a decision about if/when someone requires care in an assisted living or nursing home. I don't know what financial resources your mother has for that kind of care, but there should also be a possibility of public assistance, particularly if she qualifies for hospice. In the US, you just have to get a doctor to sign off on hospice and she would get all kinds of services. I forget whether you are in the US or elsewhere. But a social worker could help you find the resources you need. I know you have been feeling hesitant to make the call that she needs more help than you can give. I remember a social worker telling me once, at a point where my mother had been in the hospital for some time, that it's often hard for family to see how far a loved one has declined, because we see them every day, and of course because we love them and it's hard to see. But it sounds to me like your Mom is in a state where she would really benefit from skilled care. And remember this: getting her skilled care isn't bailing out on her! It's likely that skilled caregivers will be able to think of things that you wouldn't think of, and it may very well be the best for her as well as the best for you. And if she gets to a point where she's really stable, she could always come home again. Big hugs!

jjj111

Just one more thought: even if you feel strongly that it isn't yet time for your Mom to receive skilled care, it would still be a great idea to reach out to a social worker and start thinking about how to make the transition when the time comes. These things take a while to set in motion. If you do end up taking her to the hospital, you could always ask there. In the US I think all hospitals have a social worker available.

Spalding

Hmm yeah. I'll see how she's doing tomorrow. If this persists, I will definitely get her to a doctor's tomorrow night or something like that.
It's also a good idea to get the ball rolling, get the info I would need on that. I'm not in the US, but there's definitely access to social workers in Canada as well.

LexieCat

Don't wait to try to reach a doctor tomorrow NIGHT. I'm thinking mainly of you. She sounds like she's potentially near the end, and I don't want you to have to deal with all the what-ifs. I doubt there is a whole lot that can be done for her, but it shouldn't all be on your shoulders.

Spalding

BLergh. I already had tried once to reach her doctors and they said if she feels that way, she should get to a hospital and then they changed their tune. She sees her doc on the 28th, but she said she doesnt want me there!? Im gonna probably go anyways lol.
I just dont know how to go about it. Like do I just tell her that Im taking her to the hospital despite her wishes? She will try not to go. She will just get up and leave once I get her there.
I think the best bet will be, if she's like this for much longer, I take her to the hospital. If not, I go to her docs and suggest hospitalization. If nothing comes of that, I go to the family doc and see what the options are then.

Like today she's still very weak, she slept until I got home this afternoon (so she's basically slept from 11pm friday night to 4pm sunday/today, not having gotten up to use the washroom, eat or anything). Now she's up, she's seeming better.

She also wanted to talk to me about how I am treating her. She says I've been yelling at her (sometimes, to wake her up, or yes, if I'm angry), and that I seem to stick my nose in where I shouldn't and that she wants to do this her way.

She also expressed that she's hurt that I've been away all weekend. So I told her that I can't go changing around my plans because she's unwell, but I do what I can. And then she said that she's never tried to stop me from doing things?!
So I challenged her on that and she said that she's allowed to feel 2 things at once.
oy. At least she communicated. That was helpful. That's a good step?
Doesn't mean I will refrain from doing what I need to for her health and safety.

Hawkeye13

Sending you support Spaulding

Please do check into getting some help--if she does get worse you really can't, and shouldn't, try to handle her care alone.

hopeful4

Spalding, your mom is one sick lady. It's time for her to face that. She should at the very least have skilled nursing care, or if there is nothing else they can do, be on hospice care. It would make her quality of life, and your's, so much better.

I think you are right that it's going to be a good day followed by a few bad. I would say she is trying to get you to be her caretaker full time, so that is why she gets angry when you are not there. She wants YOU to do it. Thing is, that is not healthy for you, or for her.

Hugs to you sweet girl. I am so sorry this is happening to you.

Spalding

Hey guys,

So I ended up getting her to the hospital since she hasn't cleared up yet.

She was very reluctant, but went in the end. The paramedics made an awesome referral to services to help with daily tasks since it was clear she's not been taking care of herself.

Also, now waiting to see if she gets kept in here. Her ammonia is high, and her sodium is low, which is why she's doing so poorly.

They're now giving her lactulose to help evacuate the ammonia so she starts doing better.

More waiting. Now on four and a half hours at the hospital and no solid answers on keeping her....I really hope they do.

Spalding

ok! So. They ended up admitting her, but not without trying to discharge her first lol. She almost got let out!?
I guess I was adamant enough to make the Dr look twice at her bloodwork, and so they kept her in case of infection and in order to give her anti-biotics and to do some testing. Further it will help her get on track with her meds, have a structured environment that will hopefully take care of her well.
This also gives us time to get her home care organized.

I really do hope that comes through.

LexieCat

Good, I'm glad you got some breathing room. Yeah, the ammonia with liver disease is a bitch. It causes hepatic encephalopathy, which is a form of dementia. When my second husband had liver failure and his ammonia was high, it was exactly like dealing with someone with Alzheimer's. Your mom is difficult even without that, but the high ammonia definitely makes it worse.

Hugs, are you getting some help from family in arranging the home health care?

ShootingStar1

Spalding, I am so glad that your mother is in the hospital and receiving proper care. The hospital has discharge planning, and you can tell them that she lives alone and has no friends and no one to care for her and it would be dangerous for them to discharge her without arranging proper home care for her. The hospital probably has some liability if they do so, and if you press hard enough, and don't say that you can take care of it all yourself, then they will probably have to help.

You've carried the world on your shoulders with all of this, and it is time for people in the health care field - her doctor, now the hospital - to step up and do what they are expected to do as part of their jobs.

ShootingStar1

hopeful4

Good! Now...breathe for a moment. Use that referral you got from them, she needs it. Just do it, don't even let her try to talk you out of it.

Tight, very tight, hugs to you.

Spalding

Hey guys!
Thanks for the support in all this. At the moment, I haven't heard back about home care yet. I also don't have any family involved or close enough to be involved at this point to help out with things.
She finally got her room today. She's still super weak and unwell, obviously. Out of it. I'm hoping she starts improving soon.

Part of me fears that being in the hospital will make her worse, considering how she rebounded on her own at home, and how dependent she has become over just one day at the hospital. I guess I just have to think of it getting worse before it gets better?

She'll be getting physical and occupational therapy tomorrow which is great.

But. I just can't seem to quell the worry that this could be it.

On a positive note, I was looking back on my posts and was able to pin-point a date for when she stopped drinking, which was March 15th. So that MIGHT take off 2 of the 6 months she would have to wait to get on a list for transplant. Hopefully. I will have to ask the doctor when I go in next.

LexieCat

I'm glad she is in the hospital for now. Someone with problems like your mom's is truly in an "iffy" kind of situation. She may not have a lot more "bounce back" left in her. If she declines, it won't be because she is in the hospital rather than at home; it will be because her condition is one that won't let her get better.

Say some prayers for her, if you believe in that. And trust that she is in good hands--the hospital's and her Higher Power's. Try to let go of the worry. What will happen will happen.

Many hugs and prayers for YOU, as well as her.

Spalding

Thanks so much Lexie. The hospital is doing what they can for her, and she is getting clearer of mind now. It's on and off, but definitely better for sure.

But. I just found out she actually has an 83% chance of dying in the next 3 months. So. Yeah. Not good.

I updated my sister today. I feel bad for her because she's about to be alone in a foreign country, and she's kinda wishing she was back here, in part out of fear, but also to be of support to me, and also so she's surrounded by family too. I told her to wait a bit, and we will see.

She also indicated that she is willing to be a living donor if she's a match. I am too. I'm going to inquire about that on Monday, and push it if possible. At the least find out if our blood types are compatible, and then see if I am allowed to consent to a shorter sobriety time since it would be a part of my own liver anyways.

It's gonna be a painfully long, yet potentially scarily short road ahead.

happybeingme

Spaulding, I am so sorry things are still so bad. It is honorable that you two want to be living donors but she may not be physically strong enough right now to survive surgery. I don't want to be scary but it may be a good idea to talk to the hospital social worker about what paperwork you need to make decisions for your mom if she is deemed incapable. Be strong honey. I will say a prayer for you

LexieCat

I second happy's suggestion. You should also keep in mind that even someone who is miraculously made well again can go back to drinking. I was POSITIVE my second husband, who was told he would need a transplant, and almost died, only to find out he had EARLY cirrhosis and would be fine IF he never drank again, would stay sober. He went back to drinking a few months later, and is still drinking himself to death. That's why they say alcoholism is "cunning, baffling, and powerful." No sane person would do that.

Hugs, keep hanging in there.

redatlanta

My husband when he got really sick with pancreatitis and diabetes was suggested to look into a pancreas transplant.

He told me one of his first thoughts was that he would be able to drink again.

This was a couple years before he got into recovery, but had stopped drinking for the most part (only because it made him sick).

I would suggest that your mom get into some sort of treatment or 12 step program before transplant. Of course that's her choice.

Good luck with all of this and lots of hugs.

Spalding

I understand that she might drink again. That's her choice. She'll at least have a little more staying power than she does now. I can't control her, I can only possibly give her the chance for life again.
I would go into it knowing fully that it's a possibility.

I just can't sit here knowing that there's a chance she might be able to live.
As for her being too weak for surgery. Yeah, that's likely true, but I just have to find out and move toward the process if possible.

The other thing about this is the not knowing. Is it that she could just die out of the blue, one day she's here, and tomorrow she's gone? Or will we get some sort of inclination before it happens? My sister wants to know if she should be coming home or not...

redatlanta

My Uncle died of Cirrhosis. I'd say that leading up to it everyone was well aware that was where it was headed. His stomach was distended and he was yellowish. He still "functioned" and he still drank.

He died with no indication that we needed to be looking for it. I don't know if I am explaining it well - we certainly all knew it was coming but there was nothing extraordinary that happened the day he died or leading up to the day he died. He fell out out of a chair and stayed conscience for about an hour, then died two days later.

You may get signs that its headed that way or you may not. Its really a toss up.

What I would advise your sister is the statistics you have been given by the doctors. From there she will just have to make the decision. If your mom makes a turn you might have the time for your sister to travel to get there. No one can predict how someone is going to walk that journey - she could just as easily have a heart attack and be gone as slowly decend over a period of days or weeks. She also might recover. People do miraculously turn around.

Its a tough call you are in. Both of my parents have been seriously ill for two years and I have made that call to my siblings "get down here NOW". Thankfully they have always recovered. What I do now in emergencies is give my siblings as much factual information as I have and let them make the decision. When I am asked "Do I need to come" I say "I can't make that decision for you, I don't know what will happen, I can only tell you what the doctors have told me". Personally I think its the best way to handle it. Its too much pressure to try and guess and deal with a sibling who puts the responsibility on you to provide time with a loved one before they pass.