Monday, February 29, 2016

#SOL16: Guilt, Guilt, Guilt and the Möbius Strip

Ophelia (M.A. Reilly, 2009)

"There's something I need to accept," Rob tells me in halting speech a day ago.  Later he will add, "I need to get to the other side."

Outside today the temperature is spring-like. And I too have a yearning to move on.  For the last five months my son, husband and I have been focusing on getting Rob well.  For the last three weeks after receiving the terminal prognosis, I have been seeing to Rob's earthly needs as he drifts between here and somewhere else.  Taking care of him here at home is difficult and I am feeling so worn down from lack of sleep and the exhaustion that also comes with the amount of work it takes to care for him and most everyone who comes to visit while sitting next to him waiting for him to die.

Each day Rob tells me something about dying and in the last 24 hours these messages are very direct. Today, before our son went off to high school Rob told us he plans to die before 2:30 this afternoon--which is the time Devon would be getting out of school. Rob now seems to know that he needs to die to get to the other side but isn't quite sure how to do that. He is lodged mostly in another world.

After Dev is off to school with Jane who spent the last two nights with us (thank God for friends who know how best to help) and Rob's mother who is still asleep upstairs, I try to change Rob and find I just don't have the strength to finish the job. This undoes me and I sit in the big chair next to his bed and cry.


I am writing this because this is what dying at home is like. It is love and it is guilt. It is extremes. It is exhaustion. It is fear. It is terrible. It is grace. It is pain. It is uncertainty and certainty. It's also a great distance from the portrayal of death on the big screen or in fiction--when the camera zooms in to capture the painful, yet oddly beautiful end.  Rather, I have watched Rob come to terms with death and now desire death and not know how to achieve it. And I am wracked with guilt today for wanting my husband to pass on--not just for him which would ease the guilt, but if I'm being  truthful here, also for me. We need to end this misery--a misery that should never have happened, but did. And even as I say the words, I know how I will regret them--how I will regret even a second lost with this man.

"Each day I tell myself I will not look at you, and each day I fail. I can't not look," Rob tells me in a moment of lucidity this morning.

I can't not look too, I think.  Me too.

And that's the truth.  It's like we are caught on some odd Möbius strip. Non-orientable and yet we continue to move.


  1. Oh Mary Ann "I can't not look" - so much in these words.

  2. Replies
    1. Likewise Deb. Sending you the best as you make your next journey.

  3. A fissure not large enough for two worlds to pass through. The Christian bible offers: "Keep watching and praying that you may not come into temptation; the spirit is willing, but the flesh is weak." And so you are guilty of love in the first degree; could be a lot worse!

  4. I've been following your thoughts for the past couple of weeks. I've been through this more than once with loved ones; although it is so hard to let them go, and it is painful, you will have the strength to move on... and so will he.

    1. Thank you Ruthann. I am praying for all of us.

  5. I pray that you never suffer from such pain and sadness again.
    -May you never know any more grief-

    1. Thank you so much. I feel a lifetime of grief I am holding.