Wednesday, November 08, 2017

Shock

Very often I stand in my icon corner and I just wail at God: "He died!!!" 
Like I am in shock and astonished and dismayed and surprised that after all the anticipatory grief, the thing actually happened. 
The fact that it is so jarring has come as a surprise. 
"He died!!!" I cry. 
"He died!!!" 
It is all so wrong.

Tuesday, November 07, 2017

Widowhood 101: Unclogging the Sink

Tonight the kitchen sink was clogged up with some herbal stuff that a certain someone decided to send down the garbage disposal.  This device is NOT meant to deal with leaves, herbs and twigs...So I tried a snake, and I tried a plunger, to no avail. I had my hand all up in there, picking twigs and leaves out for a very long time... Then I decided to get radical and I took the pipes apart under the sink.  And I removed the gunk.  And then I put them back together.  And then I had to do it a second time because there was more gunk I missed the first time.  So I did.

I did this.  Successfully. 

I didn't call a plumber. 

I didn't have to discuss with anyone what to do. 

I didn't have anyone disagreeing with what I thought should be done. 

I just saw what needed doing and did it, because that is now I am.

I saved a bunch of money. 

It is scary and awful to be alone, but unilateral decisions that turn out well....kinda nice.

Wednesday, November 01, 2017

Sad Sack Report.

I guess a couple of weeks have gone by in my sad sack life and I failed to update my blog.  Everything is quiet and I'm supposed to be resting.  ha.  I was really sick and now I'm just run down and I can't dislodge a certain pile of congestion in my chest. 

What, you ask, have I been up to day to day?  Well, living peacefully with Bethany and making food in smaller quantities of highly nourishing variety.  Today was lentil stew with spinach.  I creamed it so she was able to eat the spinach without any textural challenges and we both liked it.

On Sunday evenings B and I have been driving down to Berea to have supper with the college people.  That's always nice.  I'm trying to let go of that sense of doom I have about whatever it is they are doing or not doing, and only worry about ME and my own repentance and let them carry their own selves, while still being a loving and supportive presence in their lives.  It's hard to know how to be a mother of young adults.  They don't come with a manual at this age, either.

Lots of paperwork when someone dies...so I have been running around doing paperworky stuff.  Today was print off and fill out some forms for life insurance policy that Wes had through his job, and then take it and fax it and then mail a paper copy just in case.  I also made a photocopy for my records because it seemed to me that that would be something Wes would have done and he was very good at the paperworky stuff.

I've signed up for medicaid for me and the kids.  I've had long conversations with them trying to be supportive and encourage them in their depression and grief, to keep putting one foot in front of the other.  I've prayed a lot.  I've been to church.  I've gotten groceries.  I've sewn a dress for myself just for fun,  and started knitting a boring hat that no one needs.

Often, I run out of energy mid-way through the afternoon, and I have to go home and lie down.  I've had some nights where I hardly slept, but the past two night have been good sleep.  I have had some really bad dreams processing the cancer and Wes' death...trauma stuff.  Next week I start seeing a hospice grief counselor...so that's good.  I need that.

So, yeah...I'm a bit of a sad sack.  Wiser heads than mine have commanded me to wait until January before I "do anything". Ok...January. 

I have no idea what I'm doing.  But tomorrow already has a small to do list waiting, of necessary tasks that must be done and I'm sure that by the time I do those things and deal with food and any errands B might need, the day will mostly be done, and the energy will certainly be used up. 

And so one more day goes by... I cry a lot. 

Tuesday, October 17, 2017

Widowhood: Week 1

Today B and I went for a hike in Berea, after I'd dropped off a bag of forgotten-at-home items with one of my college kids.  The mountain we climbed was the same one Wes and I hiked about a year ago, and I could not help but think of him often.  I can't remember if our hike was before or after his brain surgery last September 28.  At any rate it was a very difficult climb for him that day and we had to stop and rest frequently.

Today I was very pleased with my own fitness improvements since last year, which made getting up to the top very easy indeed.

Yesterday I screwed up my courage to visit Wes' grave.  It was there, a mound of dirt.  The funeral flowers were in better shape than I had expected them to be, probably thanks to the rain we got the other day.

My days feel...calm.  The fear that went along with the anticipatory grief has lifted, since the thing that I was dreading has come to pass and is behind me now.  And for some reason, some of the fears that I had about this future I am now in (which I knew in my head were unrealistic fears) are no longer with me.  I've just been calm and sad.  Oh so sad.  The numbness lifted a bit last night since it was Monday night last week that Wes died, and I had my first REALLY BIG sobbing session.  I told God that crying would have to do for my evening prayers, and I crawled under my weighted blanket and fell asleep eventually.  So, yes, evenings are hard.

I was going to go out to a movie with some friends this evening,  but am staying at home with a head cold instead.  B and I played scrabble on our first evening at home alone after the others went back to college.

I've been managing.  There are tears.  I've been very intentional about long walks in nature, working out at the gym, reading good things, and staying hydrated....and making very very very specific to-do lists each day so that I don't just drift.  Wisdom tells me to rest and recuperate after what I've been through.  Part of me thinks I should pick up seasonal work with the holidays approaching.  I'm not interested in internet advice on that score.  I'll figure it out.

Mostly, I miss Wes.




Monday, October 09, 2017

Asleep in the Lord

My beloved husband, Wesley, fell asleep in the Lord tonight at 11:17 pm.  He had valiantly been fighting grade 4 glioblastoma brain cancer for the past four years. 

I am grateful that I got to be his wife.  I am grateful for our kids.  I am grateful for his faith in the Lord Jesus Christ.  I am grateful that he is no longer suffering this terrible illness that he had. 

He never ever complained. 

Glory to God for all things. 

Death has been defeated, for Christ is risen!

Still He Sleeps

Wes is "actively dying".  He has been sleeping almost non stop since last Monday night.  Last food he took was last Tuesday morning, and that only a few bites.  Only sips of water and now only sponges.  I try to give him more but he won't take it. 

Yesterday was his "rally" and he woke up.  We had the kids fetched from their college and hugs all around.  He received communion and many prayers were prayed.

Today he sleeps.

His body is showing definite symptoms of the death process. I won't go into details.  You can google it, and if it is on the list, you can imagine it is happening here. This death thing is ugly and stinky and I hate it.  And I have absolutely no control over how long or short it will take. 

And I have absolutely no idea whether to send the kids back to college for a few days, or whether that would be superfluous and just require turning around to fetch them again. 

I am not good at waiting.  I have NEVER been good at waiting. 

So I pray that God would show me what needs doing.

And I wait.

Tuesday, October 03, 2017

An Update

Wes has been on hospice almost three weeks now.  His decline seems very rapid.  Today he is sleeping and will barely rouse to be fed.  He slept through a bath, unresponsive with no memory of it. 

I asked him earlier if he was seeing angels and saints yet, and he wouldn't say, but got a very smirky sly grin on his face.  All morning long he kept saying over and over how happy he is. 

He is not in pain. 

Glory to God for all things. 
10/3/2017

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

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

Glossanoitolalia

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

Shifting

Stuff has shifted around a bit this week.  I'm more "on duty" now that Wes' right hand is useless...so 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

Superhuman

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.