Taking care of someone who is dying [updated - she has passed]

In My Humble Opinion
21

I’ve watched several family members decline and die.

What the OP is describing is not unusual. Towards the end, people slow down or stop eating. They aren’t in distress about it, they might even say they don’t feel hunger - it’s the people around them who are in distress over the matter.

Those of us watching often have a do-something-do-something-do-something-do-something-do-something-do-something-do-something-do-something voice in our heads. It’s part of the misery, especially when there is nothing you can do.

At this point, you might want to be sure you know what mom wants. If you are having trouble asking her yourself try the social worker or nurse or someone.

22

I do ask her. Aside from trivial stuff like bringing apple juice, she doesn’t seem to think there’s more I can do. Which, I guess, would be fine but I need to know about the arrangements, the paperwork, numbers to call and she doesn’t seem to talk about that.

23

If you mean that you’d like a list of her bank accounts and a list of who to notify, I’d ask her those things specifically – not both of them at once, and the second one possibly in the form of asking her where she keeps her contact info and if she’ll let you access that, and then at another time and maybe bit by bit go through the list with her to weed out people you don’t need to tell.

If you mean what will you need to do legally, ask hospice or a lawyer.

If you mean what kind of funeral does she want: it’s possible she genuinely doesn’t care.

24

It could be she wants to leave it up to you. Or she wants to avoid it so badly she’ll wind up leaving it up to you.

When I asked my dying spouse about what he wanted done with his body after he was gone he first quoted me some stuff about Klingon culture (which was very much Mr. Broomstick, he’d been a Trek fan since the original series), then stated he did NOT want to donate either his body to science or organs to anyone else (though with cancer there wasn’t a lot that would be suitable for that anyway). Everything else was up to me. So, in fact, I started shopping for cremation services before he died. That way, I had a plan in place for when he was gone.

Which is how I handle these things.

If she’s not going to open up about what she wants done afterward then it WILL be up to you (presumably - I’m assuming you’re the decision maker). In which case one option is to plan “Unless mom says otherwise I’ll do X, then Y, then Z”. You can then continue to gently ask mom her preferences and change accordingly, but if she still refuses to state a preference you have something mapped out.

That’s the option that works for me. It’s not an option that works for everyone.

I also spent a half an hour with a lawyer going over state laws regarding deceased spouses, what I was and wasn’t legally responsible for, options, and items to consider. It turned out I had already covered most points, but I found it reassuring because I was not functioning terribly well the first couple weeks afterward.

What I’m really saying here is that if your mom refuses to discuss this with you, you are still allowed to discuss how you will cope with/deal with things on your own with a social worker or lawyer. If, for example, she won’t give you her banking information and she passes away what are your rights/responsibilities and how would you go about informing a bank that you are the person responsible for dealing with her estate, if you are that person (I’m assuming again). Mom still has the option to take control, but that way, if she doesn’t, you’re not struggling to deal with these issues while in the midst of your grief.

Again, that’s what I have found works for me. If something else works better for you, by all means go for it.

25

Yes. Plan for this; because you may indeed not be functioning well for the first couple of weeks afterwards. Or the first couple of months. Or longer.

Grief takes different people differently; so this may not happen for you. But plan for it, in case it does.

26

I’d like to suggest you find an attorney who specializes in Elder Care. When we knew my mother was terminal the nursing home, insurance companies, etc., create a huge deluge of paper work. I realized that their goals were to benefit their own bottom line and I really had no idea what was going on.

I called an Elder Care attorney and he set things straight, becoming an advocate to me and my mother, arranging power of attorney, transferring car title, transferring the deed to the house, etc. Everybody’s situation is different – these guys are specialists – saved me an incredible amount of hassles and money that I had no idea was even possible.

27

Since visits may be allowed, she’s agreed to go to the hospital tomorrow. Being fed intravenously may make her sharper. She looks like an Auschwitz inmate and her eyes are glassy/empty. She’s also starting to have more of a temper.

28

I hope that helps.

Best wishes to everyone involved.

29

Yeah.

If she’s fed and properly cared for, she might get better. There’s a low probability she might get strong enough for chemo although that seems unlikely. She’d have to bounce back by a lot. If her lack of energy comes mainly from her not eating enough, it might come back.

30

Yes, well, you seem to have a realistic grasp of the situation. We did try IV nutrition for my spouse when he was dying. In his case he did not gain an ounce nor did he regain his strength, the problem was more the cancer than the lack of eating. Although ensuring proper hydration did help his alertness.

I found it frustrating when people focused on Battling the Cancer and Winning the Fight! We never did stop “fighting”, but we did at a certain point change the goal. When it became clear that remission was not going to happen we switched from “maximizing time” to “maximizing quality of time left”. There comes a point at which chemo or radiation is going to make things worse, not better. When that time comes for her let us know, we will be there for that if you need us.

31

I’m quoting this post in case you were tempted to skim over it. I know it’s a hard message to hear.

But if she knows she’s dying, and you know she’s dying, and she doesn’t want to eat… perhaps the kindest thing you can do is to let her not eat.

Please do get a professional counselor involved to help understand your mother’s wishes and motivations. If she’s ready to let go, the counselor can help you come to terms with it.

I’m very sorry you’re going through this. All my best to you.

32

Yeah, she’s going to die and accepts it. Her 71st birthday is on the 21st and I doubt she’ll see it.
I’m also worried because I’d been staying with her through the coronavirus lockdown for economic reasons. Having to deal with both the emotional and financial loss at the same time might be hard.

33

I missed her by less than 10 minutes. Hospital personnel had told me to call them in the evening so I could visit her. I took a walk which went past the hospital around 6:30PM. When I made it home around 7PM, I got a call telling me it was best for me to come to the hospital. I got there around 7:30 and she was already gone. By the way her head was positioned, the last thing she saw was the blue sky through the window.

34

I’m so sorry.

35

Thanks.
I don’t know if it was just the physician trying to make me feel better but she said that some people prefer to die on their own.

I really wish I’d been there to tell her she’s one of the most loving people I’ve known. She was very giving, I’m not sure I realize how much. I wish I’d been able to tell her one last time that she’s a good mother.

36

I’m sorry for your loss.

I think she may well have agreed to go to the hospital, expecting this to happen. Maybe she thought it would be easier for you.

Nothing is going to make this easy. But the doctor may well have been correct; some people would rather be alone.

I think most of us wind up thinking that there was something else we should have managed to say; no matter how much did get said.

37

Once she went to the hospital, there wasn’t going to be much time. I just expected it to be days rather than hours.

I tried to have an emotional talk with her in her last days but she didn’t seem to want to participate, even remembering good memories.

38

Missed my mom by minutes, too. I’m not good at this sort of stuff – for you, for your mom, and for my mom, I weep.

39

I’ve cried a little but surprisingly little. It feels like I should be feeling worse. Her no longer being part of the world feels unreal.

Just one month ago, she was doing all the things she’d been doing for most of her life, going out, laughing, paying attention to the cats.

I’ve been in a bad mood this past 1-2 months. There were some things from my childhood I was still bitter or sad about. Partly, I wanted closure on those things. I wish I’d been more loving towards her.

40

I saw the apartment was empty then I had the automatic thought that she’d be back soon.

I heard a small noise in the apartment. Figured it would be her.

It’s starting to hit me more.