My mom is in an excellent care home with hospice support. She’s very gradually been declining for months, and comfortable, but this week, seems to have taken a turn for the worse. I had thought she’d been withdrawn for months - my last visit, last month, it took her a day and a half to warm up to me, and when she did, she became distressed about having to say goodbye again (I live long distance). I just told her that I was going to be sad to leave her too, but I was there for a week, and shouldn’t we just enjoy the next several days together. And we did, we had a lovely visit. She didn’t seem traumatized by my departure, either.
But this week, she didn’t want to see my sister, and she didn’t want to speak to me by phone. She does interact with her primary caregiver, but she literally turned her face to wall to avoid my call.
I’ve read and reread everything I can find regarding the dying experience. Most recently, the original Kubler-Ross description of Acceptance, and how the dying need to detach from everything and everyone they love in order to most peacefully move on. I can imagine this and I respect this. And I don’t want to make her passing any more emotionally difficult.
On the other hand, it is really difficult to decide not to fly to her again. Not because I need to see her, more that I can’t bear the thought that she could feel abandoned without family. No matter how clear she’s made it that she wants me to move on.
I’ve never been one to believe that everyone wants to die with their hand held, and I don’t think either she or I need to be together during the final moment. But given that hospice is estimating “weeks,” do I go or not go? Could it only burden her? Prolong her suffering?
Any thoughts or related experiences/ reflections would be super appreciated.
Talk to her primary caregiver and ask when would be a good time to see your Mom.
Use your heart, your mind, and your intelligence to make your decision.
This time in your Mom's life, being at the end, cannot be figured out by reading EKR, it just can't.
You go.
Because if you don't, we will have to use EKR's advice about death and dying to help you get through your grief and guilt. And that will not work. imo.
Also, I’m not viewing EKR as some infallible authority on the dying experience. I’m generally skeptical of the stages of grief. But Withdrawal seems to be a commonly recognized and near universal aspect of the dying process.
My cousins gently tried to explain that to my mom, and she said too bad -- this was her sister, and she wanted to see her one more time, and she did. My mom didn't bother my aunt, nor did she stay with her more than a few minutes, but it was important for both of them. My aunt died two days later.
Not everyone withdraws the same way. My dad didn't withdraw from people, but when he was diagnosed with inoperable cancer, he simply let go of all the stress of caring for my mom and focused on his own self-care. He actually reached out to as many people as he could to say how much he appreciated them until he couldn't any longer. His decline was very fast, but he never pulled away from me, my mom, or my brother.
I say go to your mom, sit with her for a bit, and just be in the same place with her.
If she is, go, if she isn't, you need to decide if you should try, based on your last visit she will probably warm up when she realizes it's not a drive by visit and you will be there for a bit.
I, personally, believe that you being there will not cause suffering or keep her here longer. When it's her time, she will go.
I am sorry that you are losing your mom and having to deal with this unknown. May The Lord lead, guide and direct you in this situation.
When my sister last went by, she apparently expressed exasperation afterwards, saying “Why do they come!”
Meanwhile, Mom is perfectly pleasant with her caregiver, though not engaging in long conversations or anything. From having lived with my mom for 4 months, the caregiver believes that my mom loves us deeply, and this is precisely why she doesn’t want to see us. I don’t doubt that my mother loves me, and I am confident she knows I love her.
I do think Mom would warm up again if I went, but the point would be to not cause her stress, or disrupt an inevitable process and “pull her back.” Recently she was in some pain (issue has been resolved) and said to me plaintively, “I just want to go already.” We’ve been through the whole “can’t go until it’s your time” many times, and I had thought she was at peace with that now, she’s been pretty comfortable for the most part, so that broke my heart.
This is all just such a tough nut to crack. I just wonder if all the conventional wisdom of showing as much love and support as possible could be misguided, at least in some cases.
huge hugs to you and your mother in this extremely difficult moment.
i agree with spadrvr: be with your mother.
one thing is what one says ("i don't want to see you, talk to you...move on")...another thing is what one really thinks/feels.
i do think her heart would be deeply warmed, having you there.
i don't think anyone really wants to die alone.
hugs!!
You've had what sounds like a good relationship with mom all your life. That is what you should work on remembering and let this EOL behavior go. It's not 'her'. Some people, as they pass over, do not bother to talk to the actual people in the room, instead carrying on conversations with relatives and friends who dies years ago.
Go visit, if your visits seem to upset her, then leave. DO NOT take this behavior as anything other than what it is: your mom transitioning from 'here' to 'there'.
She cans still feel your love, I am sure.
Bless you, I know this is hard.
I have been at many bedsides with dying patients. Most tend to die when they are ready and however works best for them: alone or with people, with or without last rites, given permission or without permission.... Mostly, the ussies with hospice are making sure the patient is comfortable and allowing family to visit as often as possible. So again, I stress that you should do whatever is most helpful for you.
Because of covid my dad wasn't allowed visitors and I don't have any lingering heartache about not being with him. It truly is a personal journey and nobody on this side can help us with that journey.
Whenever my Aunt starts her dramatics about my dad being alone when he died, I politely tell her that people that believe in Jesus as Lord and Savior are never alone. I want to ask her if she thinks someone should have died with him, because we all die alone in that sense of by ourselves .
I would send her cards that the caregiver can read to her and stay in touch with the caregiver. Things might change and she wants you there.
It is a good thing that she is ready. I am sure being sick, bedbound and unproductive makes the waiting difficult, that's how I take it when anyone says why are they still here or they just want to go.
You will do the right thing, for both of you.
I think you're right, that things may change, and as of now, planning to not buy a flight right now, and just be on standby in case they do. Meanwhile I'm hoping the hospice chaplain will go and be the right person to feel her out about this.
I'm sorry for your loss, and I am glad to hear you weren't distressed about your dad's passing alone. In your case, you didn't have a choice. And I personally think that when it comes to the final moments, the dying have already detached, not feeling lonely or any anguish, not feeling much emotionally. I guess depending on how one goes, but if one has had time to process. For me, it's not about being there at the moment at all, just about seeing her as much as possible. It's been a month since I saw her last, it had just seemed time to go again.
I hope we hear from you about your decision.
I wonder if she's just trying to be strong/brave and trying to shield you guys from the pain of her passing?
Whatever your first gut reaction is what you should do. You can agonize for a long time, waffling back and forth. That’s of no help. Just go with whatever your gut tells you, and don’t look back and don’t second guess.
My FIL passed in March. My MIL said that in the last few days, she was gently patting his arm, and he asked her to please stop. She was devastated. He’d also sometimes stopped responding verbally, which was also so very hurtful to her.
But we all know how deeply he loved her, there is zero doubt among anyone that knew him. And from what I’ve been learning, this withdrawal might be what must happen for us in order to let go - we must detach from everyone and everything we love, the world. It can be harder for us, the loved ones, than the dying, if we don’t consider or understand this. And for the dying, if our loved ones can’t let us go, it has the potential to be traumatic, and so much more difficult to let go.
I think it was incredibly loving for you to be there for him and not reinsert your hand. Hugs.
My mother has rallied, with hospice rescinding their “weeks” prognosis. She is back to being comfortable, eating again, in good spirits, and seems willing to engage now. A friend of hers visited yesterday, and enabled a facetime chat. She was happy to see me and talk to me.
So, I am boosted, I have booked a flight, and I am on my way to see her next week! I am very much looking forward to spending some time with her, and beyond relieved to have this dilemma behind me for the time being.