My grandfather is still alive. He’s definitely less responsive than he was this time a week ago. When I came to see him with my brother on Wednesday afternoon, I brought him a donut from Dunkin’ Donuts, which he ate, and a coffee, which he drank over half of. Now he hasn’t eaten in about four days, and he’s taking in water & soda (his request) via oral syringe several times a day. He’s dying, and it’s so unbearable to watch. Each day he gets weaker, sleeps more, talks less.
Yet… we’re not sure if he wants to die. I want to preface this by saying that he has pulled stunts like this in the past. He would get upset over being in a nursing home, dealing with the legal guardians (they’ve been in place since October of 2007) or from dealing with people at the nursing home, and his way of “rebelling” would be refusing or skipping dialysis treatments.
This time, of course, is the worst, since he’s been skipping them left and right over the past month, and then last Monday only went for an hour before telling the techs to take the needles out, that he was just completely done with everything.
Since being in the hospital he’s been very restless. And he’s still hanging on. His potassium levels alone should have killed him by last Thursday. Everyone — doctors, nurses, hospice staff — are amazed that he is still alive. Even more amazed that he is still lucid and “with it” during the times that he is awake. He’s still drinking (though very small amounts). Still urinating. Still talking (a whispered rasp, since he is getting weaker and his mouth and throat are so dry).
Him wanting to die is just not sitting well with my mom and I. If he wants to, then fine, we respect that, we’re okay with that, and we’re accepting of that. But it’s just so unlike him to want to basically kill himself in this manner… and he never said anything to us. We just had him out about two weeks before this all started, and he had a great time at Panera Bread and that at my house. And last Tuesday — the day after he was admitted to the hospital — we were planning on taking him out for lunch, an appointment with the lawyer (to try and dissolve the guardianship since they’re doing a lot of illegal things, including letting his car get repo’ed, not paying any of his bills, and not keeping the heat on in his house, which resulted in the pipes bursting and ruining brand new carpeting and flooring, which resulted in them turning around and trying to sell the house to the lowest bidder, and denying him any type of spending money) and then to my house for dinner and movie.
So… I don’t know. We’re so torn. We’ve been talking to him a lot, of course. We have asked him several times if he really wants to die. No answer every time we asked, despite him answering multiple questions right before we would answer that one. Today, he told me he didn’t know. Then this afternoon, he told me he wanted to go back to dialysis.
We told the nurse. She talked to him, then called the hospice doctor. There’s going to be a “team” meeting tomorrow morning, with the nurses, hospice doctor, his kidney doctor, us, and the guardians, to decide what to do. One big question is the quality of life he would have if he were to go back on dialysis. Could it get him back to where he was before (getting around okay, but needing the aid of a wheelchair sometimes)? He has been without dialysis for a week, so it’s hard to say. But then again, he is alive and talking and drinking and urinating, when in all actuality he should have been dead almost a week ago. Also, there is some question as to if he’ll pull this type of thing again… he can’t go back and forth on this. This is his life hanging in the balance, as well as the valuable resources of dialysis and such.
This is going to be a hard decision to make. I want the right decision to be made, even if it’s the one I’m not happy about. If his quality of life would be poor at best, then the kindest thing to do would be to let him die, however long that takes. But if not, then he needs to be transported to the hospital as soon as possible, so he can be put back on dialysis.
I’ll let you guys know tomorrow what the ultimate decision is… I’m sure my mom will call me as soon as she finds out. I would love to be here, but my thirteen year old brother is having his graduation ceremony and he’ll be speaking during it, and I promised him I would be there (and video tape it for my mom to see).
I just don’t know what to say about this. It sounds like a no win situation for you guys. You are right he can’t go back and fourth on it and I hope he learns that from this experience if he chooses to get back on dialysis, or if they let him. I have no idea how they do that kind of thing. Could they actually deny him that if he said I’m ready? That would piss me off, but I guess they have their rules and such.
With my grandma she’s dying of cancer and it keeps coming back, she said no more this time. No surgeries or chemo. Actually, I don’t even think she’s a candidate for most of it at this point. But, the sucky thing is that it’s throat cancer and she’s had her voicebox out for months and since the cancer came back she hasn’t been able to talk to us yet, nor will she ever again. The tumor will just grow and cut off her airway and she’ll die. She can’t eat either, she takes her food in tubes or as ensure, etc.
BUT if my grandma said she wasn’t ready to die and wanted to try anything I’d fight like hell to help her. So I can see exactly where you are coming from, as hard as it is for us to watch them die can you imagine what they are thinking in their minds all day long? I hate reading that you are going through this, it’s the worst situation ever!
Wow Jenn, this is a really difficult thing to deal with. I honestly don’t know what to say or how I would handle the situation but I hope the best, whatever it may be. *tons of hugs* We’re all here for your support and assistance when you need us.