How do I stop waiting for death?

That's a long read! Mom didn't want a port but they asked her a few times. She never did chemo. She did rituxin for a while but it made her have to get transfusions every 2 weeks instead of every 4 weeks as she had been. She never took a therapeutic dose as she was scared to take a lot. It gave her fever and chills every time. We did about 15 sessions over a few months. I was unemployed at that time. I lost my job of 14 years through no fault of my own (and not related to my mother's health). Mom's veins sometimes collapsed but not too badly. She was an easy stick whereas I'm a very hard stick. Mom had an advance directive, and I also had medical POA. I was still shocked when we brought her in (remember, she had been giving orders just hours before!), and the doctor asked if we wanted CPR, ventilator, etc. if she stopped breathing. My father, brother, and I all agreed no as her body was in bad shape. One of the last things she said to the doctor when he asked what she wanted was, "I want to die." She had a massive spleen, looked 9 months pregnant. Her hemoglobin had been running in the 7's but was 5.5 I think a few days before she died (we were preparing for a transfusion but they didn't have an opening until Monday; she had me call the ambulance Saturday when she couldn't breathe; before that, she didn't want to go). Her last night at home, she had bad diarrhea. Luckily, she was in a diaper but she couldn't get up. Dad and I tried to help her for about an hour before she got to the standing toilet. I changed her diaper. It was bad, and she said she was in pain. The doctors had always said her spleen would burst so it's my theory that it did burst, and with internal bleeding, her hemoglobin would plunge. Saturday morning, her ability to breathe got worse and worse. I was shocked when the paramedics said her pulse ox was maybe 75% I think (don't recall exact number). After she died, I asked the nurse the lowest it read, and I think it was 35% oxygen. My mother was one hell of a fighter; anybody else would have been long dead.

Zombie, you have to get help in whether dad likes it or not. He doesn't sound like he is capable of making safe, good decisions anymore, so that is now your #1 job. Help can come from lots of places when family won't. You can't do the healing you need until you get help. You can't be a good caregiver if you are struggling yourself. Help is no sign of weakness at all. Nobody on this earth can do this kind of care alone. That person doesn't exist.

==Religious groups like church, temple, etc. If you are affiliated with one, reach out to them and ask for help with repairs, yard work, errands.

==Cultural/Ethnic community groups who have a structure to call in volunteer help and coaching and support that would be much harder or impossible to access any other way. Make your situation and needs known so help can come to you.

== Social services can connect you to community and government resources for monetary support, in-home help, and other support resources.

== Be very honest with the doctor. If the doctor is not listening and blows you off, you have every right to use another doctor. Many family practice/GP docs are not trained on the specialties of aging and miss signs of things they ought to pursue. And let's be honest and say that there is still a lot of sexism in medicine where anything coming out of a female isn't taken seriously. Your job is to advocate for dad's best interest no matter what.

My mother also has bi-polar, diabetes, and advanced dementia. If it had been up to her, she would have preferred to remain in her filthy hoarding house, with no hot water, no telephone, and eventually no power because she had forgotten how to pay bills. Her food was rotten and her medication was all mixed up. She was manic a lot of the time from not taking her meds right, not eating, not eating safe food, and having chronic UTIs. The roof leaked and the hot water heater, dishwasher, washing machine, sinks, toilets were all rusted out completely. She had lost her reasoning to understand her unsafe situation. She was not able to correct it.

I had to step in and become her guardian, which meant overriding some of what she said was & wasn't going to happen. My goal was to be able to tell any judge who would look at her case that I had done every single thing in my power to keep her safe - even if it made her mad. I didn't want anybody to suggest elder abuse even though I was 1800 miles away.

sorry, Zombie, sometimes I tend to do that but thanks for responding; pretty sure dad wouldn't have wanted a port either but he wasn't able to tell them one way or the other or really even have been able to understand what they were asking - maybe we could have explained it to him but not really sure; they wouldn't do chemo on dad; he finally started the epagen (sp?) but by the time they did it didn't really help any and he'd somewhat gotten to where he was having to go about every couple of weeks anyway by then so he probably did about that many at least but no, probably more, because he did them for one full year at least; he'd been getting them for at least 6 months and probably then possibly about every couple weeks till they could get him somewhat stabilized when they brought up about the port when they saw how much he'd been in there but maybe they had got him somewhat settled because don't think it kept on being that much, at least for a while. His grandson, who was unemployed and stayed with him, pretty much took him - didn't always stay, which became an issue - except for when I went to give him a break and that's when they brought up about the port; don't think they'd ever even brought it up to him. No advance directive - other than what he'd just told me verbally - and definitely no medical POA - he never even understood what those were - even though hub thought I did. Dad had been fine before too - as fine as he was - still wonder if he just fell - which he never went out that door and still wonder how he even got out it - or if he fell because of all this. Just glad you were close (unlike this other situation we'll try to get to) because they did ask grandson when he got there - not sure if went in with or followed ambulance - I think about all that or maybe they just did the CPR and weren't getting anywhere and really actually don't think they asked about ventilator, more about just letting him go and he just couldn't handle that; he hadn't seen him as in really bad shape and I'm not really sure he really was so when you say your mom was what do you mean by that? and he certainly wasn't talking by then or when he was found; I just so wish he could have seen the doctor he was going to tell but it just got all mixed up but then he did end up seeing him about 3 mos. later but by then with all that had happened he didn't remember any of that, hardly knew why he was seeing him and certainly was no longer on the medication he was talking about but it was about getting those transfusions; I wish he'd asked him about them but I don't think he ever did; I think he would have told him he wouldn't have wanted to have them. Would they just not take her spleen out? maybe not, like they wouldn't take dad's gall bladder out; we were concerned it might burst, what the first ER doc said as well and wanted to take it out, when he called me, by time said ok and got back; they'd changed shifts and the new one wouldn't even talk about it. So I think you could be right; wish you could have gotten her to the ER then; if grandson hadn't taken dad in - and not really sure why - just not feeling good - think that could have happened to him - and agree when his hemoglobin would get low he would get to where he could hardly breathe but we never had any problem getting dad in to get his transfusion - I hate that - I guess that would get you to want to go in - that's the concern I have with hub's uncle - aunt said he fell again, only this time outside on the steps, wouldn't surprise me if he didn't get too hot again, he'd just had that happen and almost fell trying to get back in from being on the porch but thinking more back to when he had a bad fall he still didn't want to go to the hospital or her call an ambulance so she didn't do it and he didn't go even with popping nitroglycerin tablets but he did get out of it but even if he hadn't he's pretty much said he just wants to go on too but your mom said that even after she'd wanted you to call them, though, right? somewhat interesting - you think maybe she just didn't want it to happen at home? where he does - don't think I ever checked his pulse ox but when asked about letting him go and he just couldn't handle that the doctor didn't know what to do, so it wound up being the ICU doc who put him in there and put him on the ventilator; I think it took them awhile to realize just how bad a shape he'd apparently gotten in from either the fall or didn't think he lay there that long but it was cold but then they said they probably actually helped him but think they really meant just kept him alive for right then, not really sure how much help that really was. They both fought, didn't they but not sure either one really needed to - do ya think?

Zombie, sorry, started to say thanks for responding when that was about your mom and your post was about what you're going through now with your dad but somehow I misread and was thinking we'd actually hijacked somebody else's thread - gonna go back now and try to reread

I agree with a lot of what sandwich is saying but I also know it's not always that easy; some church groups are really good about doing that type thing, even for non-members, just for the community, while others aren't so; something else dealing with with hub's aunt and uncle; their church isn't being too helpful and somewhat seems as if the other only applies - and don't know what you are - but if you're atypical - a problem we're having is being out here in a rural area where those type things have typically been just informal, so even though, in theory there is a formal type group like that there's not one out here where we are.
Not sure if you've said much about your dad's financial situation, just know that, again, in their situation they make too much for any of the formal - means based - government resources. But is your dad, by any chance, a veteran?

Does he have a wheelchair? that is one thing they did get for him through his doctor but it took their son to do that and he's the one who did it himself, not her, to make it easier to take him to the doctor but she's running into that herself even though it's a female doctor - now she's the one with the ethnics - she's Indian from India, so wondering if that's what's going on or the not being trained because she had seemed to just dismiss her and him in pursuing anything except we were told she'd signed him up for their geriatric program but then we were told he wasn't but also we were told he didn't show up but she says they were never told so not sure if she just did it and then when found out just didn't take him or even cancelled. But she definitely would like something that would get him what he needs. So if you have something like that or if he is a veteran maybe you could go that route.
I didn't get the idea his house was as bad as sandwich's mom's and I'm assuming you're paying the bills anyway so that wouldn't happen but then if it's even just falling apart you might be able to use that to get guardianship but still not sure how much good that will actually do; think it would depend on how much help you can get anyway; sometimes it gets to a point it's just hard to get enough help even if you can get all you can; they're just past that point; that's why they wanted me to get it for my dad.
But she may have not done that to let it get like that so that she could step in and get guardianship; my dad did, of course, wind up in the hospital, more like your mom, and they're the ones that pushed the guardianship issue

I have had similar feelings about death and waiting for it with my mom. But I am reminded of the Serenity Prayer God grant me the serenity to accept the things I can not change. The courage to change the things I can and the wisdom to know the difference. Living one day at a time one moment at a time accepting hardships as a pathway to peace. I hope this helps. Sending hugs to you.

Zombie, I know it sounds trite but just do it. My father was sort of like yours. He totally and completely ignored his health and pretended everything was fine even when it was obvious that he was anything but. The torture he put my mother through was something it took me a long, long time to forgive. When he finally ended up in the ER (after attempting to escape from the ambulance while being transported) it was a genuine relief, as I dreaded stopping over there to find him dead on the floor while my mom was out doing whatever and trying to lead a regular life. I took the same approach she had to, that if he refused to care we couldn't care for him.

Do what you can but don't stop living your own life. Caring for my mother is a whole different thing as she actually tries and fights for her health. If things went the other way around and he outlived her I wouldn't have hesitated for a second to put him in a home, as cruel as that may sound.

What stood out was that the dad won't let anyone into the house to take care of things that are "falling apart." Live that here w/my mother. She's the one w/the $$$ and, tho' somewhat demented, still writes checks, so I'm only on her account as POD (payable on death, re beneficiary). So, since I cannot write checks, tho' she has enough, the plumbing that is so bad it has leaked/sealed itself (signs on the bare pipes & on ceiling tiles where covered). I don't have the $$$ to fix HER plumbing, and figure it'll only be fixed once the resealed spots break through again and flood the place! But that makes even more damage in an already-too-wet/musty (odor comes upstairs, even, when rainy season!) basement if it goes until it finally creates a flood.
This is what I was thinking about when someone told them to "repaint your room," etc, etc ... the "falling apart" has to do w/more major things than paint, I'm thinking ... just like here.
So, whatever they are, hope you can get them dealt with since I noted that you do want to stay in that house. I don't. What I want/need to do is get back where warmth makes a physically nicer atmosphere. Missing where I lived in the SW.