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.