I’ll be watching this discussion with great interest.
Because if people can tell me why people act they way they do, it would be so helpful to me.
Right now I’m feeling questioned and overwhelmed by some of those around me.
Wish I could give you a hug right now
@fendrock I’m so sorry to hear of your husbands illness. It’s clear you are such a caring person, he is so fortunate to have you to walk with him through this.
No advice except to say feel free to use this thread at any point to sound off or just ask for support. We WILL give you that. 
There are plenty of us here at all hours of the day - lean on us if you wish!
@fendrock - no suggestions just sending some love and light your way. 
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@fendrock, When my husband was seriously ill, I do not know where I got the grace, but I was inspired to accept others’ need to say goodbye or grieve, as you have indicated.
With very few exceptions, I did not turn away anyone who requested a visit to our home, as they could get here. (2 of DH’s high school friends drove 4 hours each way in one day for some time with him).
But access to the room that my husband was in was limited according to his needs and desires. So it was, “I am going to nap now”, or “Time to change the dressing” to get folks out of the room.
Now, 10 years later, I still feel bad that in the early days, I denied a visit from someone who never got to return while my husband was alive.
I do not know the specifics of your situation - out of home treatments, home health visits, etc. that might put restrictions on your time, and your need to be specific.
I am sorry you are going through this. I wish you the peace of knowing you are doing your best, and no-one can ask more of you than that!
How do you respond?
Here’s an example:
You: You planned to arrive late to see us. It would be good if you could arrive earlier. Could you maybe come on the weekend instead if weekdays doesn’t work for you?
Them: I like to do things with my spouse on the weekend, so it would be better to come during the week.
You: I totally understand. However, with the way things are going for DH right now, he really can’t handle visitors after X:00 pm. He’s totally wiped out by insert_time_here.
Them: I can’t come earlier in the day.
You: Oh, that’s too bad. I don’t know what to tell you. The doctors have told us that DH has about X amount of time left. It’s a hard situation all the way around. Maybe we could, instead, do something like a Zoom or video chat session w/you earlier in the day when he’s awake and feeling up to it?
then…honestly…the people who REALLY care about spending some time w/him will rearrange their schedule. They will figure something out.
Whoever is telling you that they like to spend weekends with their husband, well, guess what? We all like to spend weekends with our significant others. Great. But we all have choices to make. THAT person will have to live with their decision.
If, on the other hand, the request you’ve made is for them to do something other than visiting with and hanging out with your DH, then you might be more at the mercy of when they’re available to come and do whatever it is that you’ve asked.
However, if when you’ve “made a suggestion,” be mindful of HOW you’re asking. If you’re tip-toeing around the topic, not being direct, sounding sort of wishy washy, etc., then you could inadvertently be communicating to them that you’re flexible and it’s not a big deal if they have conditions that go along with their “ok, we’ll help.”
For example:
Them: Is there anything I can do to help?
You: Um, maybe…well, I was sort of thinking…maybe…it would be kind of nice if somebody could maybe help with ___.
Or this:
Them: Is there anything I can do to help?
You: Yes. Thank you so much for asking. What I really need right now is for someone to just sit with him and be IN the house with him for an hour a week while I go grocery shopping.
(or whatever it is that you really need help with)
Them: Ok, how about Fridays from 8-9 pm?
I am so sorry your husband is sick. My feelings would be very hurt by responses like that. Sending lots of hugs and love your way.
I can’t begin to guess why people would respond in those ways.
Hugs to you, and vent away here if you need to.
OP here - thanks everyone for your responses.
I was not looking for advice in regard to how to handle recent responses to my requests – I wanted to let you know what my requests had been (nothing particularly outrageous), because I was trying to understand why people would offer to help, but then want to negotiate the terms of such help.
My conclusion is that this is part of people not knowing what to say in such situations.
“Let me know if there is anything I can do to help” seems like the right thing to say. But those saying it don’t necessarily expect a person to respond with a specific request, just as those who say “let’s get together for lunch some time” don’t expect to receive the response, “when are you free next week?”
If they are then asked to do something specific, they respond as they would under normal circumstances, taking into consideration their schedule, what else they have going on, how they need to prioritize this request against other obligations, etc.
For those of us who are caregivers, we are experiencing the exceptional situation (living with someone very ill or dying) and recognize it for what it is. It’s understandable that many can’t categorize the situation in a way that enables them to respond to a request differently than they would to any other request.
You are giving us all food for thought about how haphazardly we can use words. In a difficult/delicate situation, we need to not express a canned response but really take a moment to think about how we want to support the person on the other side of the conversation.
If we can only offer words of sympathy, then that is what we have to offer. If we offer to help then we need to mean it and also LISTEN to see how/if/when we can follow through with help.
Empty words = empty promises.
I really like that article - Circle of Grief. I read it when my father passed away and when I was going through divorce (they both happened about the same time). It helped me to focus on myself and not feel as guilty not to support or be as understanding of other’s feelings.
OP - you in the bull’s eye of circle of grief right now. Don’t worry about how others maybe feeling or not saying the right thing. Focus on your husband and your needs. Keep people who are making you feel better around, and keep others away. You will have time to sort out your relationship and feelings at another time.
I think you are spot on in your assessment.
I think I may have been guilty when I was younger, though most likely I would have avoided the person because I was so uncomfortable with death and dying. Not MY mortality, because I was young and not thinking like that, but just the concept and feeling like I didn’t know what to say. I didn’t want to make it worse so I wouldn’t say anything. I’m not proud of this, just being truthful.
But as we age, more people we know, including close loved ones, die, and we know better how to handle these situations. For me, grace and understanding in these situations had to be learned. My FIL was the first of the four parents to die, and I have adopted something for my friends that someone did for us 25 years ago. I leave an ice chest full of varied drinks for the family and visiting guests on the front or back porch that I replenish every couple of days. That way the grieving don’t have to come up with this piece of “entertaining,” plus it doesn’t take up fridge space. Juice boxes if I know there are littles in the extended family, sodas and bottled waters. That kind of thing.
Anyway, all that to say that I had to have this behavior modeled for me in my 30s before I knew how to help grieving people. And, yes, I think don’t make an offer to help if you aren’t prepared to help right then and there! But maybe that has to be learned, too. (((Hugs))) to you.
@Youdon_tsay was VERY helpful to my sister when she lost her son in 2015. I still think of that often.
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Thank you. That really took me out of my comfort zone, but when a friend loses a child who was your kid’s good friend for years and knowing it could be any of us – well, it definitely hits in a different way and requires more from us. I think of him often.
When my mom passed away, I texted one friend, and food started arriving at her home, one of my friends brought disposable coolers with drinks. We had a lot of out of town family and friends arrive, it was all so helpful. To this day I drop coolers with beverages on porches for those who need it.
And what’s great about it is it requires no face-to-face contact, if the person doesn’t want that. I text the person to say that I’d like to bring over a cooler of drinks if that’s OK and ask if anyone has a particular drink they’d prefer. And then you can leave it on the porch and let them know when it’s there. 
And a variation on the cooler. We’ve had (unfortunately) a few friends who were ill. They left a cooler on their porch with ice packs in it. For folks who wanted to drop off food, they could put it in that cooler. The family regularly checked and emptied. Usually they were watchful, and IF company was OK, they would go to the door to say so. Folks sent texts or emails to let the family know they were dropping something off.
And we always suggested packaging in single serving size containers.
Yes, please don’t leave food in regular pans or dishes! It can be challenging to remember who left what dish, and also to have the time/energy to return everything.
This…I don’t ask what someone needs, I offer - when my best friend fell and shattered his shoulder, needing a full replacement, the day he got back home I called and said I can come up on Sundays, we can do laundry, I’ll tidy the apt, and we can walk to Trader Joes/Sprouts for a grocery run. And I did so for 14 weeks. He lives 50 miles away…but I know he lives alone, and while a few well-meaning others brought over prepared meals, and he was able to Doordash other meals, there were some other things (like laundry & changing sheets!) that no one even gave a second thought to.
Maybe it’s the empath in me, but I often think of the stuff that falls through the cracks - and I care, I really truly care.