This Doesn't Sound Good, Does It?

Miscellaneous and Personal Stuff I Must Share
61

I hate to say it, but she’s implementing her own hospice program. Deep in what’s left of her mind she does not want to go on.

If her religious attitudes permit, it’s time to talk turkey about the reality and whether the chemo is improving her life by extending it, or simply prolonging the misery.

And yes, this weekend is not to soon to go see her. It might actually be too late.

As to smoking … At this point it doesn’t matter. The cancer inside her doesn’t care whether she smokes or not. If it gives her pleasure, let her do it. If she wants to live on nothing but ice cream, let her do it.

To be sure, a better diet will let her last a little longer. Like 3 weeks instead of 2. But is that a good thing? Is that a net benefit for her? What does she think? Can she still think?

From this great distance it sounds like the one thing she doesn’t have is anyone willing to speak the truth and discuss the realities of the situation. If all the docs are mum and all the family members are silently hoping for a miracle while looking the other way as hard as they can, and Mom’s pretty well out of it all the time, … well … that’s how they pump $100K of chemo into somebody in their last month of life and render that last month a hell of drug side effects instead of the final farewells it could have been.

Difficult topics all. Been there, done that, have the scars. Good luck.

62

Stop. It doesn’t matter. She is probably in the twilight of her life.

[spoiler]The only question left is how much she will suffer before she dies. Breaking an addiction is difficult and painful and ugly; why do you want her to go through that?

If she were in pain, would you want her doctor to limit her access to opioids so she wouldn’t get addicted?

Getting upset over her smoking at this point is just … unproductive. Let it go. Bring her some nicotine gum or mints.
[/spoiler]

63

We saw her on Saturday. It was very upsetting to Ivylad to see her like that.

She’s skeletal, weak, and doesn’t eat much. We did get her out of bed to play poker for about an hour, which I think was good for her well-being as well as her mental state. I suggested to Ivylad that he ask his sister to try to play some sort of game with her nightly, even if it’s just Monopoly, to keep her mind engaged.

We took IvySIL and IvyBIL out to dinner to give them a break from caretaking. Mum is done with chemo and I guess the next step is a PET scan to see where things stand. She’s still planning on going on the cruise, and I told IvySIL there’s a possibility she could die on the cruise, and she just shrugged. Right now, it’s what Mum wants and what she’s capable of doing. We’ll deal with the rest.

Thanks everyone, for your support.

64

Good luck. You’re down to the end game. She may be holding out for that cruise with all her remaining stamina. Which might be enough, but probably won’t be.

Hugs.

65

Thinking of you all. I’m sorry that you’re going through it, and I hope it all goes as well as possible.

66

Of course he’s upset, that’s part of people dying, and that’s part of life, and at least she has her wits about her. Cold comfort, maybe, but it is nice when you know you’re saying goodbye.

Are you getting her to reminisce? That’s usually - mmm, not fun, but enjoyable, for everyone.

67

We made an emergency visit on Sunday. We were over at my dad’s when IvySIL called with info regarding Mum’s latest check up. ** j666**, she’s not strong enough to hold a long conversation. It’s a struggle just to get her to eat.

She’s down to 80 pounds. The doctor said a feeding tube was an option, but we’re not going that route. Mum doesn’t want it either.

She’s very frail and is soiling herself without realizing it. We had to get her Depends.

She’s not eating and while we were visiting she was unable to lift her foot to step up from the patio to the house (she goes outside to smoke.) Inside, she lost her balance and fell, banging her elbow. We were all standing there but couldn’t catch her in time.

Ivylad is going to make some phone calls today to arrange hospice. She’s home by herself during the day and we can’t risk her falling and no one knowing about it until the evening. IvySIL needs the help, which is how we convinced Mum that this was going to happen, since she said she didn’t want a nurse.

Mum also mentioned that she had prepaid her burial, and we went through her papers to find the documents. IvySIL was reticent at first, saying it was disrespectful, but I told her it would be one less thing to worry about and she agreed. Luckily we found the information.

The horror of it all is that we’re taking her on the cruise next week. IvySIL says Mum is insistent, that she suffered through the chemo to get on the cruise. I tried to point out that Mum may want to, but she’s not capable, and if she dies on the cruise that’s another mess to deal with on top of everything else. Still, it’s not my decision, but Ivylad and his sisters, and ultimately all I can do is support them in whatever they think is best, even if I don’t agree.

Waiting is agony. At least she’s not in pain (or she says she’s not in pain.)

Thanks for keeping up. I don’t think it will be much longer now.

68

Have IvyLad and/or IvySis talked to a probate attorney? I know you’re not really worried about inheriting anything, but it is generally an enormous legal hassle when somebody dies on a ship. They will be offloaded at the first major port of call. Not a big deal if you’re sailing back into Fort Lauderdale but you might end up with a death certificate (and body) in Jamaica, which the US embassy/consulate will not necessarily arrange to repatriate.

69

I called the cruise line to find out their procedure. From what we understand, her health insurance will pay for her body to be sent back home (we asked a similar question several years ago when IvyFIL was ill and they went to England.)

I’ll remind Ivylad to check on that too.

70

I am sorry for what you are going through. Sometimes the prelude is harder than the loss. We are in the same boat, but spared the daily chores.

My father in law has congestive heart failure, bowel cancer, diabetes, pain his feet… not sure if that is diabetic neuropathy, a result of his generalized swelling from congestive heart failure, or for some other reason. He has one more radiation treatment that requires a trip out of town every week, then after 6 weeks they will determine if he is a candidate for surgery to remove his lower bowel. But he doesn’t WANT an ostomy bag. He doesn’t want to live even.

He will be 74 next week. He smoked for over 40 years, and at times it was more than a pack a day. His favourite saying used to be “the only green things I eat are iceberg lettuce, green relish, and lime jello”. He weighs over 300 lbs, (or did in January) It is absolutely horrible hearing about his deterioration. My hub went home to see him in January. If he is still alive we will go in late June/early July to see him. But I am a nurse, I know exactly how it is going to go down. I’ve prepared my hub for how bad the end is going to get.

Fuck cancer, fuck it fuck it fuck it. But also, Pops, couldn’t you have taken somewhat better care of yourself?

71

I agree wholeheartedly, Mona. Cancer sucks. It’s such a lingering undignified way to go. It can be preventable if caught early, but Mum was of the generation that you go to the doctor only when you’re sick. So I seriously doubt she’s had a Pap or a mammogram or even a colonoscopy.

We confirmed her insurance will NOT pay to transport her body if she dies on the ship. I don’t know if that changes things (I’m strongly leaning toward skipping the cruise) but I told IvySIL to contact a lawyer.

72

And the nurse said she should NOT go on the cruise, that if it were her mother she wouldn’t take her. She said she may last through the cruise but she wouldn’t be comfortable.

That’s the other terrible thing…Mum is losing the ability to make choices for herself. Her kids are having to do it.

73

So sorry to read all of this.

If she’s in such poor condition, I think it’s a decent possibility that she might get to the ship and be denied boarding on health grounds. If there is a flight to the point of origination, the airline might also deny boarding.

74

I don’t see how you can deny her this cruise, if she wants it so much …

Well, yes, I do, you can lie. Take her to a nice hotel, where she can lie in the sun by the ocean, and come up with a good lie about the cruise being canceled.

Find out what she really wants - staying in a tiny room in a crowded facility with third rate entertainment? Or the sun and the ocean and first rate food and fruity drinks? - and give her that.

[Do you have any idea how important you are to the family, dealing with all this practical and difficult and mundane stuff? I want to thank you and I have nothing to do with this.]

75

Yeah. Is Mom’s interest in the cruise for the cruise & destinations, or is it more of a family reunion centered on her?

She’s obviously not going to be doing anything in the ports of call, so the cruise consists of staying in a very cramped hotel room & her looking out the window between having somebody bring her some buffet. At that rate a land resort does a lot better. Ideally one in the same town as she’s in.

This ain’t pretty no matter how it sorts out.

Good luck & lots of hugs to all.

76

Younger IvySIL told her yesterday that the doctor says she needs to build up her strength from the chemo and then she could go on the cruise, we don’t want her getting sick, etc. Mum was okay with it.

So as it stands, Ivylad and I are going, Younger IvySIL and her family is going, and Older IvySIL is staying behind with Mum (she had a refundable ticket.) Younger IvySIL needs the break and this is a celebration for her sons’ graduation and birthday.

The nurse also said that we’re going to have hospice “for a while,” that based on what has been described, Mum’s death isn’t imminent.

Not ideal circumstances, but the best we can do for now.

77

I guess getting the hospice nurse scared the crap out of her.

The nurse introduced herself, told her she was from hospice, and explained everything, including that based on her status now she has about six months.

For the last two days, Mum has been eating a lot more, including cereal, soup, and a chicken quesadilla. I guess it took someone other than her kids to impress upon her how dire the situation is. (I’ve heard it called powdered-butt syndrome, in that people tend not to take advice from those whose butts they have powdered.)

And, because the end is not imminent, the doctor okayed her for the cruise.

78

You would not believe how many people improve once I get them transferred to home hospice (from my home health). Sometimes it’s powdered butt syndrome, sometimes it’s the extra hours of respite care for the caregivers that hospice is funded to provide, sometimes it’s getting them off the half of their medications that they don’t really need anymore but the doctor was afraid to discontinue before. Mostly, it’s all of the above.

I’m sure the hospice nurse explained this to you, but hospice doesn’t have to be forever. If she regains enough strength that she and her doctor decide that maybe treatment with an eye to a cure might be a good idea after all, she can be discharged from hospice. She can be re-enrolled in hospice again later if/when she gets a 6 month prognosis. It’s a much more fluid system than people think.

I’m glad she’s feeling better, even if only temporarily! I’m rooting for her going on the cruise. Yeah, it might not be everything she hoped it would be, but as dying wishes go, it’s a pretty good one.

79

The so-called Last Rites are supposed to be “for the health of body and soul”. A priest who was a friend of the family used to laugh that he hadn’t really understood the first part until he got an aged parish: some of his customers got “last” rites more than twenty times. They got better as soon as they saw him come in wearing purple…

80

That’s a very good sign she is eating more. I have some past experience in the care sector. Once an individual loses his or her appetite for any substantial period it’s invariably downhill from there.