Friday, September 22, 2017

Circles of Caregiving (based loosely on the Ring Theory of Grief)

So, my mind is going a million miles a minute, analyzing my current experience w/ Wes being on hospice etc. So I'm going to keep stepping back and writing about it in neutral, general terms. The things I am thinking about are general principles, social scripts and dynamics, and appropriate boundary issues...stuff that is uncomfortable because it doesn't get talked about and our culture (as I've said before) lacks solid rituals surrounding these areas of life (well, I think we do have them, but each of us feels like we are reinventing the wheel...because they are unspoken rituals. I am here to speak of them).
I've posted before, the article  about supporting a grieving person, with the concentric circles...that one vents outward and supports inward. So, based on the same model, where the person who is dying is at the very center and their spouse next to them, and kids...and then concentric circles of intimacy moving out from there, let me say some things about support, friendship and how to walk with a person/family who is going through end of life stage:
1. If you are Pluto, do not try to be Mercury. When a person is getting ready to die is NOT the time (generally speaking, there are always exceptions I suppose) they are going to want to be building new relationships. If you have barely acknowledged their existence in your life up 'till now, but your heart goes out to them in this situation, add them to your prayer list and move on. Don't invite them to coffee or out to dinner (they won't have energy for that anyways) if that is not already what you have been about, as a friend.
You might think to yourself "Oh, but my offer is kindly meant and they will see it for what it is." As an insider to such a situation, currently, I can say: Your offer IS kindly meant (acknowledged), but it is also a source of stress for the person/family. Any time the center is put in a position of having to say "yes" or "no" it is stressful. It might be only mildly stressful, or be more stressful depending on your relationship...but know, there is stress involved in each interaction. This stress is unavoidable, but it can be reduced. I am pointing out this stress, not to tell the world to go away...but just to teach about the energy/relationship dynamics going on in such an intimate life-phase.
2. There are wonderful not-too-intimate ways to help a person who is dying, or their family. Cutting grass, running errands, giving rides to other dependent family members, bringing meals...This is what love looks like from a community. Support at this level is invaluable and relieves the family members to do the heavy emotional lifting (and physical) required of them at this time.
3. The same is true for the main caregiver: If you don't already have a close relationship, now is not the time to build one.
4. If you give, give freely. The family of the dying is in emergency mode, and is exhausted. Do not get offended if thank you notes are not forthcoming, or are completely forgotten. The gratitude is there.
5. The best analogous event in our culture that we DO have social scripts for, is the birth of a baby...only this is analogous in an opposite way. Who gets to be in the birthing suite? Who will be there when a person passes? Who is changing diapers? Who is dropping off meals? Ask yourself: If these people were having a baby, what would I do for them? That is the same level at which it is helpful to participate in end of life community support, based on your current relationship.

What to Say when Someone is Dying

Imaginary scenario: Someone you know is on hospice and sick unto death. You have no idea what to say because...shit, right? So, allow me to provide you, world, with some appropriate social scripts to use for when someone you know is preparing to die:
How is your day today? ...Oh, I'm so glad. ...Have you been able to enjoy any of this sunshine? //...oh, dear. that must be so hard. Is the nurse taking good care of you, though?/Is there a way to make things better today? (pain levels, etc)
Are you in any pain? ^^^ see above sub scripts.
What are you reading (or watching)? follow up questions as per usual with such conversations.
Are you able to eat? ...oh, that's good. Anything good on the menu tonight? // I'm so sorry you aren't feeling well enough to eat. to the caregiver: can I run to the store and buy juice for you?
The hospice patient may or may not be able to answer. That is OK. Lots of chatting might be too much. Or it might be OK.
The caregiver will likely be acting as the gatekeeper. If you are greeted on the front stoop when you bring a meal or stop by, please do not be offended. Sometimes it is nap time.
Life becomes immediate and very very daily and so mundane.
Hospice is not a vacation from work. It's not an "are you enjoying your time off?" type of an occasion. It's not a "kick back and live it up" time in a person's life. The hospice patient is ill unto death. If they look good, that does not mean they are fine.
They are likely to be dealing with physical things that they wish to keep private. That is to be respected. If physical care must be given, expect to be escorted right on out.
I speak in generalities here as a follow up to my observation that our culture does not provide good scripts surrounding death and dying. I will likely be posting about things to say to bereaved people, too.

Thursday, September 14, 2017


Hospice means comfort care.
Hospice means focus on having good days.
Hospice means treatment is cancelled.  Done.  Finis.
Hospice means the decline is here.
Hospice means a very supportive team coming into our home to make those good days happen.

I am exhausted.
I am numb.
I am relieved to have the help.
Mostly, I am exhausted.

I'm not going to say more than that.  Our story is not misery porn.

Sunday, September 03, 2017


I made that word up.  The greek word roots for tongue, speak, and fool.

You know, you have heard it:  A person addressing a small child or a very very elderly person in a slightly loud, slightly slow, sing songy condescending way?

That's what this word means.  Doing that.

People with expressive langue deficites also get spoken to in this way sometimes.

Such as people with autism or people with brain injuries.

Just because someone is slow of speech or aphasic does NOT mean they can't comprehend or are slow of thought.

We must be very careful how we speak to others.

For the most part most people are so good and I do believe that this speech pattern is unconsciously done in response to a person who is slow to speak or having difficulty.

This has been on my mind today because I see it happening to Wes and my wifey-bear self roars to life to defend him.

That is all.

Friday, September 01, 2017


Stuff has shifted around a bit this week.  I'm more "on duty" now that Wes' right hand is I''m doing basic stuff for him more like cutting his food and tying his shoes.

Today we went to Walmart and we bought some shirts that don't have buttons.  And ice cream.

But all this and I watched him in determination figuring out how to tie the top of the trash bag with one hand.  He is absolutely determined to do whatever he can for himself.  And yes, he's still working.

We are figuring it all out and communication can be hard at times.

So I joined a gym so I can do some strength training...because it would be foolish not to do so, knowing there's some heavy lifting coming my way pretty soon....

Being a caregiver is HARD WORK.

Sunday, August 27, 2017


This is the time for laying down my life.

Yesterday we went to the park and I pushed him in the wheelchair on the paved walking path.  It was lovely weather, a lovely breeze and we had a very nice. time  For an hour or two I was actually not sad.

And then something hurtful was said,  the bubble burst and I had a good loud sobbing cry. We ate supper, and went to vespers.  Confession afterwards.

Church this morning was like being in a fog...or something.  That feeling in the pit of my stomach of fear, like I'm on a rollercoaster.  Just constant terror. I can't escape it.

A very quiet afternoon.  I spent some time writing letters to some pen pals and then I cooked a very very nice meatloaf supper.  We ate in front the TV watching Armageddon.  I wish a giant asteroid WOULD just hit us all.  Stop the pain. Might be nice.

Am contemplating the merits of a goth phase.  Am listening to very loud (headphones) Latino music which lyrics I understand not at all.

It's like my days are mostly alone, or running errands, interspersed with getting my feelings hurt by someone with zero filter.  Brain damage. I hate it.

The brain bleed goes on.  Everything has changed.

My only task is to lay down my life and serve.  And not get my feelings hurt.

And not get my feelings hurt.

And not get my feelings hurt.

I must be superhuman.

Friday, August 25, 2017

Blessed are Those Who Mourn

"...blessed are those who mourn, for they shall be comforted."  (Mt. 5:4)

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort which we ourselves are comforted by God." (2 Corinthians 1: 3-4)

These verses give me lots of strength and hope.  Or rather I should say the voice of God speaking to me through these verses strengthens me.

If you had to choose between being comfortable, or experiencing grief and loss but drawing closer to God in the process, which would you choose?

That's just something to ponder.  I do.

Sometimes I think God is merciful in that He doesn't give us the choice.  We tell Him that we want Him, even as we are completely tied up in our earthly lives and we have NO IDEA what we are asking for...but there's that inner spark of love for Christ, and we want God.

And so God begins to rip up apart, with our permission...but ripping nonetheless.

And in return for clay and ashes, God gives us Himself.

And in the end, the losses are not really losses at all (except that that they so are, paradoxically)...because we find ourselves in God and we find each other in God as well...

I say this as a broken woman in the throes of anticipatory grief who is losing her husband to cancer...

God be glorified.  that is all.

Thursday, August 24, 2017

Managing Social Media

I used to blog quite a lot, and when I got onto Facebook about ten thousand years ago, the new social media platform killed my writing on here.  I am purposing to change that, even though I know without a doubt that personal blogging is a bit...yesteryear.

I'm OK, with yesteryear.  The problem that I have run in to is that I have too many facebook friends whom I don't actually know in real life.  I like writing for people, but on facebook, I write as though I am writing to friends when in large part I am actually writing to strangers...and then I invite unwanted comment into my life because I am not editing myself as well as I should.  

On blogger, I know for a fact that I am writing to the whole entire universe, and I can edit my words accordingly.  And I can write with more focus, intention, and purpose.  

I want to share some of my thoughts and my writing with people, but I don't want to bare my soul to everyone. I hope I can write about more than just grief, but I don't know if I will be able to do that for a long time to come.  

Welcome to my new old blog.  I hope you follow me here.  I will be purging my friends list on facebook rather extensively.