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Sunday, October 30, 2016

Your Dying Spouse 226 - The Land Of Look-Behind

On old maps of the island of Hispaniola (now the home to Haiti and the Dominican Republic) you'll find areas of backcountry marked The Land Of Look-Behind.

These were the places to which escaped slaves ran...but they were never truly free, because they always had to look over their shoulders.

It's something that both patients and caregivers do, as well. It may be the hardest part of dealing with a terminal illness, at least the toughest on the soul.

For patients, the end of life almost inevitably brings a stock-taking, a retrospective...and the tendency is to concentrate of failings. I know I have done this.

It can be devastating, and puts the lie to the moto posters that say Finish Strong. You can end up finishing in the pit of feeling like a failure.

It's the patient's responsibility to use mental self-discipline, of course. We tend to judge ourselves harshly, but that's a choice. One has to look at the sum total of what one's done, and never overlook the small graces one has left in one's path through life.

It also requires constructive engagement - with the caregiving spouse, and with friends. There is a tendency to isolation, and it has to be fought.

The caregiver can be a great help here, by encouraging engagement, encouraging activities that look hopefully to whatever future is left, and perhaps most of all by appreciating the good things that the patient is still contributing to the shared life.

This last can be tough, when life seems to consist so largely of recording symptoms, doling out meds, and helping one's spouse on and off the commode. But there are, hopefully, small kindnesses that you can highlight, the cup of tea made for you when you're busy, or the surrender of the remote when the Giants are playing the Packers and you would rather see a PBS special on Yosemite.

For the caregiver, look-behind comes most strongly after the fight's over, and you wonder if you could have done more, and when you remember the things you remember most are your failings.

This is tough to deal with, because you can't go back and gt a re-validation that you did OK. (Though hopefully your spouse-patient does thank you for your consideration and kindnesses - I try to do this, though I am not as consistent as I would like.)

Coping with these regrets is best done through counseling and a support group.

You haven't walked this road alone; there are others who felt the same anguish, and knowing that the burden's shared can at least take some of it off your own shoulders.

You can only do your best...and as a caregiving spouse, you're already doing it.

God bless you, dear heart.

Marley update...he's in danger from the county authorities and NEEDS HELP TO BE SAVED.


He's up over 200,000 signatures, but the local authorities are now actively planning to kill him. They've removed him from the official ownership of his family. They think that we'll give up and go away. We won't.

If you have a moment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.


  1. So much wisdom here -- and multi-perspectivalism! That's definitely a gift God has given you.

    1. Michele, thank you so much! God has given many gifts along this path. Would I trade them in return for having my health back? No.

      Thanks so much for being here.

  2. I do hope that Barbara doesn't struggle with regrets too much after you're gone, Andrew. But I'm sure that your thanks to her now and this treasure trove of the love you have for her here is going to give her so much comfort and reassurance, I'm sure of it! I hope you are doing well and I continue to pray for you daily, my friend!

    1. Beth, thank you...and I hope the same thing. It is hard for her, because she wants to do so much more to help, but there's so little that can really be done. It's ever more into the space of 'grit your teeth and wait for each second to pass'.

      I'm going to try to get these posts collected into book form. I don't have the energy now, but am hoping for a remission that will allow that work and the proper attention to detail.

      Your prayers are so very appreciated!

  3. The hardest part for me is the sense of losing the person bit by bit. I don't want to. !
    I feel grief for them and me. They don't like it either.

    1. I do understand that Norma. It's happening here, too, albeit in a different way; pain and fatigue are taking me down a road that is changing me.

      My prayers are with you, my friend.

  4. I struggled with the regrets for a bit after Richard died. But mostly I looked at the good times. He always thanked me. If he had any of the feelings you talk about, he kept them to himself. I am glad that you are sharing yours.

    1. Paula, thank you for sharing this. I'm so glad that you were able to hold to the good times! I know that in many cases the good days are forgotten, and the course of the illness becomes the only vivid memory of the person lost.

      Thank you so much for being here.

  5. Having just walked alongside my dad as his caregiver for the last eight months I relate to your words. He passed away on August 24th. But I know that as hard as it is for the person or people left behind, I also know that God's plan is perfect and is timing is too. I am praying that there is comfort and peace for you and Barbara.

    1. Oh, Mary! I am so sorry for your loss, and so very moved and inspired by your steadfast faith.

      His Plan is indeed perfect.

      Thank you so much for stopping by!

  6. Replies
    1. Thanks, Susan. xoxoWaggyWaggyWag back at you!

  7. Once again, another great post from a patient's perspective. I'm sharing the link in my newsletter :).

    1. Anita, thank you so much! I'm thrilled and honoured.