[djb92]

My dad is on dialysis (peritoneal dialysis, over night, every night, for over three years). I have looked for dialysis forums -- all of them are old posts or not many posts. There was one that was okay but still, a lot of posts were dated. I can't talk about this in a support group anyway because I want to be as anonymous as I can.

There is not enough help in the world for people on dialysis or who care for someone with end-stage renal failure. My parent didn't get diagnosed until end-stage. I guess this is kind of common.

I see my mortality every day (after all, I could get the same health problems). I hear things, usually in the morning, because that is when his blood pressure gets astronomically high and when my mom screamed one morning when he had a TIA-type of thing...unconscious, eyes bugged out, tongue hanging out like a dead cow, gagging but not conscious, eyes looking like he was dead, blood coming out everywhere and we didn't know if he had ruptured something from dialysis or bitten his tongue during a seizure... on the trip to the hospital in the ambulance (we stayed home and took showers to "get ready" for days in the hospital) he apparently woke up. We had no idea he would ever be conscious again until we got to the hospital. It was hellacious, he got released early because he talked them into it, had to help him eat and poo... awful, had to go back to hospital because blood pressure dropped out the bottom...

Before all this, I had been the only one home because my mom liked to take off when symptoms were getting worse. I am constantly testing the waters -- how bad is he today, where does she have to go, how are their attitudes (because they don't tell me hardly anything), is he getting worse...am I going to have to drive him to ER with him barefoot and staggering again (to be honest, he can't even stagger anymore)...

Well, since he came back from that really bad time, he just seems like he doesn't have a filter, sort of like some people who have had strokes (but it wasn't a stroke...it was a temporary stroke-like event that is rare). I have tried to stay away from thinking about it too much, but it is becoming obvious that stuff is wrong. I've read about this... Dialysis people hardly ever get diagnosed with declining mental status because it hurts their chances at staying on transplant lists. So I shouldn't say anything about it (has been a trend in his life -- he had a rare heart condition when I was little and had to have surgery, wasn't expected to live, and I had to not tell anyone at our new town because he might lose his job...I was like 7 at this time).

So here we are and this person who was a very smart person in a successful career with all these licenses and titles can barely walk, can't stand for long, is too tired to exercise, is losing his mind from three and a half years of dialysis and the kidney is never going to get here. Even if it does, I know deep down that he'll die within days of transplant. He has lived through so much that I just know the cure will be what kills him.

How do you deal with someone who might be getting dementia after all of this? Like seriously, what do you do to tell yourself that they are still the same person? I have found a bra that had unusual stains on it, and he has reacted very weird and creepy to conversations lately. I do not leave my laundry in the laundry room anymore. I am disgusted and confused and don't really want to understand. My mom acted really shocked the other day when he said something totally bizarre, and I really thought she would have noticed by now since she is the caregiver. We just got through taking care of my grandpa after 9 years of Alzheimer's -- he died last summer. She should be able to see this by now.

My boyfriend/best-friend (whatever, I dunno, we are platonic) does not understand any of why this bothers me (he is the one who suggested that the stained bra looked like a certain fluid and did not say anything else about it...that might not be what it was at all, but it doesn't help the weird reasoning and stuff that is going on in this person's brain). I don't know how to explain. My boyfriend took care of his grandma and her sister when they were dying so he has empathy for that part, but he doesn't get why I am so stressed out -- he also has mental problems, so that is not a good explanation.

I really don't know how to deal. He is gonna die one morning, and my mom is going to scream and I will have to sit down every minute or so to not pass out. I guess I will have to check for a pulse. I don't know if you call an ambulance before that or who you call if they're already dead???? Who do you call??? I don't want to waste EMS time on a dead person. They've already been to our house enough.

If anyone knows the answers to any of these things or has advice then I would appreciate it. I don't really need hugs or sympathy but just anyone who has dealt with sick people in their house and has practical advice for how to dissociate from this. And what to look forward to after they die.

ETA: Also, we have guns in the house, because he is/was a gun nut. I am afraid I am going to be the one to find him after he shoots himself. I have no one to talk to about these REASONABLE fears. This is a totally rational fear for someone at this level of disability, aside from the fact that I don't know if he could hold a gun anymore.

[Trippin2.0]

Hide and lock away the guns, that calms at least one of your fears.


"What do you do to tell yourself that they are still the same person?"


Well simply put, they are not. Accepting that is much easier and simpler than pretending otherwise. For me at least.


My mom "disappeared" a while after she started chemo... This is not about me so I wont go into details, but that woman in the next room is not the mother I grew up with.


I accept that she has cancer, that dementia is now here and no longer approaching steadily.... And as difficult as it is at times, I still love her, even though I don't recognize her anymore.


There's no step by step manual for people in our shoes. We just have to take each day as it comes, be kind to ourselves and remember to breath.

[divine1966]

Its tough. I am so sorry you are struggling. I wonder if you can find support groups for caregivers. I saw some flyers somewhere once. Doesn't have to be dialysis but any caregiving

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You don't have to be the rock in the house. You don't, and you can't.

Do what you have to do to be comfortable. First and foremost lock up the guns so they are not accessible to him. He will have a fit, but don't give in on this.

Next. My mil was in the hospital when she suddenly went a little (a lot) off the wall. She was not herself. It turns out it was the medication she had been put on. A lot of meds will cause a change in personality, so check that out. Tell the doctor or have your mom mention it to him.

You will call an ambulance. That's all you need to know.

Right now, it's an adjustment that constantly needs, well, readjusting. It just is that way. So it's one day at a time. Wake up having zero expectations of how time in the house with your dad will go. Every day is like that. What's happening now is that you're grieving the person he was and wanting things to get back to normal. It is not like that but it IS okay to know that's what's going on with your thinking. Acceptance comes to people in their own time.

Lastly, don't neglect yourself. You are entitled to lead a normal life, even when tragedy or uncertainty is looming large. Go have fun and don't feel guilty about it. Responsibility does not include sacrificing your life for his comfort.

I am sorry about what's happening. I wish it wasn't the way it is.