Sorry about all the stress and drama. I expect SIL might give some pushback when she realizes people will wonder why she did not offer her house. Just follow your heart and do what is right for the family.
How are you holding up otherwise?
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You need to worry about what’s best for you. I think you’ve found a good plan that works for you and is not stressful.
If that affects your relationship with your sister in law, that’s on her. And her behavior. Which hasn’t been stellar.
You did the best you could. Live with no regrets. No regrets because this is about your nuclear family.
I’m very happy that other family members have stepped up. That’s a great comfort.
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My kids are sure she will come back with she will have it when she finds out we have made other plans, even though she pushed us to this. My aunt has told only one of their common friends, and that friend was flabbergasted. I did ask my aunt if their other friends would think the same way and she said absolutely; they would all agree it should be at SIL’s home.
The hospice social worker we are working with felt SIL doesn’t want to think about shiva plans as that would mean here brother would be gone. Her thought was SIL would come around, but my kids are not willing to wait and went ahead and made other plans. My cousins wife was cute, she is not Jewish, so told my aunt she needed to know what to do to have this at her home. Of course the answer is, leave a key out for some stranger to come in and set up the food! The good thing with my aunt and SIL, they have a huge circle of friends that have done this more times than they would like, and have it down to a science.
We are all hanging in there as best as we can. I am on pins and needles wondering when husband might go. Will it be sudden, or will we have moments, hours, or days advance notice? It sickens me to be thinking about this, but so want to be in the room, and hopefully the kids nearby. I have caregivers at night, every night now as I don’t want him alone, and I have got to get some sleep after the full daytime care I provide. Hope that doesn’t sound selfish, but I am no good to either of us on no sleep. The social worker asked if I was getting outside and taking walks; I asked if it counted when I take a phone call outside in the garage to not disturb my husband!
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Be aware that many people go when there is no family in the room - it seems to let them let be able to let go - please don’t feel guilty if that happens - thinking of you and your family -
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I absolutely understand wanting to be with him. Make sure your night caregivers know that if something changes that might indicate that the end is nearing, they need to let you know. It’s not always obvious, but if it is, you’ll want them to let you know.
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It’s okay to ask the hospice people what to expect on any given day. They tend to have a fairly good sense of the continuum of care and progression. Of course they cannot predict with certainty, but they should be able to reassure you that there’s time to take a call or a nap.
If you want to stay with him all the time, then do. It will give you comfort later to have that. But as mentioned, some people just have such a strong bond that they can’t let go with us there, even if they seem to be completely unaware of our presence. That can give you comfort later, as well,if things don’t happen when you are together.
Hugs to you all.
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I was sad that my mother died in our downstairs den/guestroom (this was Covid times) while I was upstairs napping in anticipation of a 2nd tough night. But I’ve made peace with the fact that she probably wanted it that way.
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Talk to your hospice folks about this. We found them to be very aware of what was happening with those in their care. I think they will guide you well.
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The good thing about the kids handling this, is that they’ll also serve as a buffer between your sister-in-law at yourself - which will be as important down the road, as it will be at the moment. They might have an easier time to navigate any potential family drama with her, while moving on with their own lives, than it would be for the two of you.
I think it’s a testimony to how you raised them, that they are stepping in with authority and taking you out of the middle of all this. You genuinely have more immediate thoughts and worries weighing on your heart. While it might feel odd, it’s quite alright to rely on them as a source of strength for yourself.
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The hospice nurse has been wonderful and was here today; she also will answer calls and text all hours of the day, but as a medical family, we know not to abuse her kindness. While the brain tumor should allow us some warning, like sleeping more and not eating, he has had a cough for almost 2 weeks, thanks to our GD. I recovered quickly, but this has lingered with him. The nurse feels like he is aspirating, but still has a strong enough cough to avoid aspiration. We decided to try a cough med with codeine as the morphine is not quieting the cough at the very small dose he is getting. If the codeine dries up the cough, we may be in a catch 22, whereas he can not cough to avoid aspirating.
I know I will not necessarily be in the room with him, but hopefully I will be home; my daughter works from my house to give me a bit of a break, even if it is just to the grocery store. The caregivers know to call me down if needed.
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I have nothing more to add other than hugs to you, Snowball.
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@snowball i think of you so often and I just want you to know that I am in awe of of you as a wife, mother, sister in law and more. You are an amazing human being. 
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@snowball I didn’t see this thread when it started, so I have no advice, just hugs. My husband died eight years ago from cancer, and I remember well that tension at the end between everyone recommending breaks and so badly needing sleep, yet feeling that I was needed all the time. It’s such a tough situation to be in, when the decisions are so hard, but the control is minimal. I’m so sorry you’re going through this. Thinking of you and your family.
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@snowball - thinking of you! We went through that with my dad many years go - hard but so glad he could be at home. Keeping you in prayers.
Hugs, snowball.
Eleven years ago my kids were my rocks of stability.
I think it was a gift to them to be able to ‘do something’.
So glad you have that, too, in your family.
The watching is hard - give yourself grace.
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Again, I want to thank everyone for their kind words and prayers; it means so much to me. I know the journey is different for all, but for those that have been here, whether for a parent or spouse, I know you have a great understanding of where I am.
Yesterday was a rough, but quiet day. H slept most of the day and skipped lunch. Unfortunately, the cough med hospice would provide with codeine is not helping at all; only the morphine and sleep quiet the cough.
He stares at the tv while eating and seems to have trouble getting food on his fork, or will stab at something and put an empty fork in his mouth. I need to revise what I serve him; he seems to do better with thin sandwiches, finger foods and heavy soups. Or, help him eat, which he doesn’t seem to mind. He is eating less, but don’t don’t know if he isn’t as hungry, that we reduced his steroids, or the morphine makes his too tired. It can take an hour for him to eat a meal as he zones out watching the tv, so it might be better to feed him. I have actually had to turn the tv off when talking to him so he would pay attention to what I was saying!
Pill taking is getting harder also. I can’t tell if he isn’t getting enough water to swallow the pill, is holding it in his mouth, or did swallow, but telling he he didn’t. I only give him one at a time and will ask if he swallowed it before giving him the next. The morning he said he hadn’t swallowed his sodium pill, which is big and taste bad; after several drinks of his juice, and then water, he said it was still in his mouth. I went ahead and gave him a bite of his breakfast in hopes if the pill was indeed in his mouth, he would swallow it.
On the SIL note, she was over last night while he was eating dinner and alert. Of course when he started talking nonsense, she kind of gave me a questioning look; it was the first time she actually paid attention to what he was doing and saying. I think she gets it now, and said she wanted to come back Thursday. I have told her many times, we are here everyday, all day, and she doesn’t need an invite to come; just give me a heads up. I am only having close family to visit at this time, not the cousin that I haven’t hear from since he was sick; sorry you didn’t see him before, but now is not a good time for me.
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I am a phonecall away if you need anything.
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You are right, those of us who have gone through this do have an idea of what you are going through.
My most important advice: know that you are doing your best. Which won’t be perfect. Because you are human, and no human is perfect. But you are doing the best you can, and that’s all you can do!
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Ask Hospice about the pills. Both my dad and step mom had this issue, and they helped us with it. Swallowing pills does get harder and harder. They will help you with this.
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I was going to post the same thing - there are all kinds of alternatives to oral medication - patches, liquids, etc… Some things may also be able to be discontinued if he’s eating less and is less active.
Big hugs to you!
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