trudging

I manged to buy presents. Put up the tree. Hang stockings. Make cookies. Put out the creche. Write a sermon (I only have one this month!) Write a newsletter article. Whoohooo me. Happy Christmas.

I also took two more loads of stuff to Goodwill.

And I am really REALLY tired of all of the crap.

dragging

I meant to write yesterday, last weekend. I just didn't have the energy.

Now I need to do the bake-clean-shop-wrap-concerts-plays-parties-worship services thing. And I really don't feel like that, either.

Somewhere between obligation and exhaustion. That's where I am living.

I know it is normal. It just sucks.

The "routine" is not routine...

Today is the first day back into a "routine" work week. However, we are finding it hard because things which consumed our lives are suddenly NOT. THERE.

• No running by the nursing home on my way from work to fix dinner and then out the door to kid activities.
• No doing laundry multiple times a week because of incontinence.
• No stopping for a special treat at the local "smoothie" store to bring in and try and tempt her appetite.
• No negotiating or jollying the staff into helping us with a more manageable routine.
• No guilt over leaving when my heart is pulled to stay because there are other people who need me.

These were part of our schedule. And now they are gone. And it's OK. It's just surprising how hard it is to have this sudden change.

I just don't want to...

I know that my heart isn't in it. I really don't care if I decorate for Christmas or not. In fact, I'd not do it at ALL except there would be a family rebellion.

I don't even want to do laundry, let alone "deck them halls."

Pre-holiday let down? Grief? Exhaustion from work, school, kids, husband??? Can I blame it on perimenopause? (sure. Why not.)

sigh

Funeral...

We stood in the mist and the rain.
The sun did not shine.
The priest made a cross of dirt on the casket.
And when the final words were pronounced,
The words of faith and promise of eternal rest,

The Sun Broke Through.

It somehow seemed appropriate.

We had tears, but they were mostly for ourselves. She is at peace. She rests beside her husband, the one she missed so much.

And tomorrow, after church, there will be no visit to her room to tell her about the music, or the sermon, or the latest funny shenanigans from our cat.

And we will mourn our loss and celebrate her great gain.

Prunes

I emptied out the fridge today. There was a box of prunes. It took me back to my grandmother, who loved to stew prunes until they were un-prune-like. It goes without saying we threw the prunes away. (I think the last time I had them, I was pregnant and constipated up to my eyebrows!)

Her freezer was full of steaks, chicken, ham, pork chops and succotash. Three packs of succotash!!! We debated taking it home, but decided that we would offer it to neighbors. They all politely declined. I guess everyone but her thinks succotash is disgusting. So, with a silent apology to her frugality, I tossed it in the garbage.

Everything we can do in her house has been done as of today. In the next week, people who need the furniture are coming to get it - table and chairs, dresser, couch and coffee table, TV, lamps. It's going to people who need it. It's all good.

And it is so very hard. The last time we turn the key and lock the door, I know I will cry...

She really is gone.

New insight...

God is surely sitting on the Throne...
But the doors to the throneroom are controlled by lawyers.

Sooo....

Guess what we spent ALL FRICKIN DAY doing today???

Three buildings, each in a different zip code. None of them giving the same advice, and none of it free.

Thanks?

sorting and packing

There are three different methods for packing...

1) One is to be logical, thoughtful and careful and put "like things together"...
(This works well if you are packing people who are organized and their stuff is sorted and ready to be packed. I am usually this kind of person. Don't hate.)

2) Another is to pack "things which are next to each other together"...
(Which can be dangerous if you are a "piler" type of person and the closest flat surface is where something "belongs." My older child is this kind of person... so is my husband...)

3) And the third is, "I am sick and tired of packing up someone else's stuff so let's just mark them all MISCELLANEOUS."

I think I am on the third way of packing.

The list goes on...

I don't know... I think I want to sell my house, "as is" and "all contents convey" when I'm about to go see Jesus. There's just so much to do to close out a home...

She did an amazing job of sorting through "stuff"... I shudder at what my children will have to do! (sorry kids...) There's really no piles of "stuff" anywhere to sort, box and bag, but there are collections of things that she couldn't part with because they were "still good."

Under that category, we have:

• hair curlers (three colors, four sizes)
• hair dryers (the old bonnet style? check. TWO of them? check.)
• ironed and folded old (used) wrapping paper
• the bags that the paper came in every morning (about two large shopping bags FULL)
• plastic grocery bags (about 10 bags stuffed FULL)
• twist-ties, neatly sorted by colors into coffee mugs (four mugs FULL)

That last one was what put us over the edge and we laughed until we cried...

But there's a lot of really really good things...

• clothes, shoes, sweaters, coats, belts, socks, panties, bras
• material, thread, findings, scissors
• books, paper, office supplies
• plastic food wraps and bags of every description
• furniture - dressers, bed, sofa, coffee tables, lamps, artwork, desk, chair, kitchen table
• kitchen - microwave, cart, pots, pans, mixer, dishes, silverware

We have to have everything out this week... We're both exhausted.

God gives grace. And provides tissues! She had 8 boxes in a closet. We've wept our way through this...

Oh. One more thing.

I'm a pastor. Not a SINGLE PASTOR that I work with has called, emailed or come to see us. Not a SINGLE PASTOR has sent us a damn flower.

It made me angry. Really angry.

And then it hit me. I'm the one who takes care of the hurting, the grieving and the hospitalized.

Who pastors the pastor??

Hid from life today

We didn't do any clean out today... We didn't sort, fold, pack, pile or toss a single thing. We got Chinese food for dinner and watched a bunch of videos.

Her place is now in the stage of "big mess" and it will take a lot to bring order out of the chaos. It's almost depressing to see how much sorting and stuff is left.

Another frustrating note is that we are looking at her beautiful furniture and trying to decide what to do. It isn't really my style. It's new and extremely well-kept. But I don't want any of it. At. All. And this is causing conflicts.

Tonight I stretched out on the couch and fell asleep... and the kids were nodding off too. We are all just worn down to our last frazzle...

Grief work is hard work...

Lists and more lists

The phone call came about 9:30 last night... and it started a flurry of calls even last night...

Just trying to come to grips with what must be done today... so much to do and think about. But the plus side of the internet and email and Facebook is that we can send out the information quickly and with a few taps of the keyboard, rather than phone call after phone call.

Those calls have been hard enough as it is... Draining. Emotionally numbing. Comforting other people's tears when ours are waiting to fall.

The kids are OK. My schedule is upside down but everyone understands.

I didn't sleep so well last night... but she did.

The Lord gives and the Lord takes away.
Blessed be the Name of the Lord.

Released...

She passed away tonight at 9 p.m.

About an hour after we left her room...

Blessed be the name of the Lord.

pain management

This was one of the most brutal mornings yet.

We walked in to find her in PAIN!!!! Serious, writing, moaning, PAIN where she couldn't stop to look at us and tell us where she was hurting. She is no longer verbal. She is unable to communicate at all except occasionally with her eyes. Even then, we feel like we are guessing.

We were in tears by the time the pain was knocked off (TWO doses of morphine) and her face slacked and she slept.

The problem with brain cancer is that when your speech goes, you can no way to say MORPHINE NOW, DAMMIT.

And we also had to educate the nursing staff on some (what we thought were) common sense measures... That if she refuses to eat, don't force feed her. Sure, if she wants ice cream. But.. no nasty vitamin drops disguised in applesauce. No taking her blood pressure and waking her up when she is sound asleep.

The only thing harder than knowing the person we know is "gone" is that we know she is in pain...

Psalm 102

A prayer of an afflicted person who has grown weak and pours out a lament before the LORD.

¹ Hear my prayer, LORD;
let my cry for help come to you.

² Do not hide your face from me
when I am in distress.
Turn your ear to me;
when I call, answer me quickly.

³ For my days vanish like smoke;
my bones burn like glowing embers.

⁴ My heart is blighted and withered like grass;
I forget to eat my food.

⁵ In my distress I groan aloud
and am reduced to skin and bones.

⁶ I am like a desert owl,
like an owl among the ruins.

⁷ I lie awake; I have become
like a bird alone on a roof.

Oh God... hear her prayer... hear our prayer... take her home.

Amen.

exhausted

That about covers it

Comfort Ye

Accompagnato (Tenor or Soprano)
Comfort ye, comfort ye my people, saith your God. Speak ye comfortably to Jerusalem, and cry unto her, that her warfare is accomplish'd, that her Iniquity is pardoned. The voice of him that crieth in the wilderness; prepare ye the way of the Lord; make straight in the desert a highway for our God.
(Isaiah 40 : 1-3)

Clutter

I confess I don't care about "keeping house." There's piles of papers and things all over the place in my home. I try to contain the piles, but it's just not my thing. I'd rather to just about ANYTHING other than clean house. Or sort paperwork.

But suddenly there's a massive paperwork job. We can't empty out her place until we know where certain papers are... like the car title! We need insurance papers, bank papers, etc. And keeping track of health insurance payments is a nightmare! (Who thinks we don't need health insurance reform??? You must never be sick. I've never seen so many forms and bills and so on... None of them paying much and all of them needing a response.)

The thing is, she was the kind of person who filed her bills immedately upon paying them. There are labeled folders and files for everything.

If someone were coming to clean out my stuff, I'd be embarrassed.

While I clean out hers, I just feel sad.

When do you tell your kids to come home??

I haven't figured this one out...

When do you tell your kids, especially the ones that live away from home, to come home.. that death is coming soon? The doctor just shrugs and says, "well it will be less than 2 months."

OK...

SO...

They know she is "sick" and they even understand she's "terminal" -- but a young adult's life is full and joyous and full of things like final exams, sports, concerts, and papers and romance. Do I bore them with details? Do we derail their studies? Do we just wait and hope that she does time her passing for the semester break? (ain't gonna happen!)

Today she was sleeping and could barely put two words together when she was awake. She wasn't hungry or thirsty. She wasn't complaining, yet she had a lot of grimaces. The nurse says that it is involuntary spasms.

We'll have some kind of Thanksgiving dinner, but I am not sure it will be very 'happy'...

I am not looking forward to the process of grieving. I know it is work. I know it must be done. Right now I feel like I am suspended in mid-air, waiting to fall into that place of tears and relief...

But I still don't know when to tell the kids to come home...

anyone? anyone? Bueller? Bueller?

emotional exhaustion

I has it....

God is faithful. Pass the tissues.

Peace Be Still
by Rush of Fools

Come to Me, you who are weak
Let My strength be yours tonight
Come and rest, let My love be your bed
Let My heart be yours tonight

(Chorus:)
Peace be still, Peace be still
Please be still and know that I am God
and know that I am God

Come empty cup, let Me fill you up
I'll descend on you like a dove tonight
Lift your head, let your eyes fall into Mine
Let your fear subside tonight

(Chorus)

Hallelujah, Hallelujah
(repeat)

(Chorus)

hard to know what to say...

She is much worse, and less outgoing. Even from 24 hours ago, there has been a change.

I tried to visit her today. I held her hand and touched her a shoulder. She turned away from me and said, 'no. no. no.'

I asked, "are you hurting? do you need something?"

'no. no. no.'

"would you like me to sit with you a while?"

'no. no. no.'


I did any way. And every few minutes, she would look at me and say, 'no. no. no.'

"no" to living another day?

I don't know.

I will go visit tomorrow...

Tissues

The unexpected kindness of others moves me to tears. A friend came by with a plate of cookies and a little box full of pocket tissues. She said that when her dad was in hospice, she remembered crying in the oddest places and never having a tissue, so she always resolves to buy a bunch for friends who are in the midst of pre-grief or grief. She said, "sprinkle them in every purse, pocket and car."

Consider them sprinkled, friend...

and thanks...

The kids...

So I took the kids to see her for the first time since she got out of the hospital. In a little over two weeks, there has been a shocking change. I guess I didn't see how BIG a change until I saw her through their eyes....

Mom. She can't close her mouth. And was she drooling?
Mom. She doesn't finish her sentences.
Mom. Why won't she walk?
Mom. She's not eating very much.

The unspoken statement was practically shouting in the silence... How long does she have??
And my unspoken answer... We don't know...

It was hard. Hard to hold back my tears in the face of theirs. Hard to explain how the body gives up life in stages. Hard to express words of hope and trust in a time of a certain end.

I explained hospice. I introduced them to the social worker. Their assessment: "She is so ditzy." (Yeah. They are right. She is!) They want to make cookies for the nursing staff.

I knew I had to be there to help them walk this road through the valley of the shadow... but it was incredibly difficult.

Thanks be to God for words and courage when I need it.

Thanks be to God...

Thanks...

A living prayer

In this world I walk alone
With no place to call my home
But there's one who holds my hand
The rugged road through barren lands
The way is dark, the road is steep
But He's become my eyes to see
The strength to climb, my griefs to bear
The Savior lives inside me there

In Your love I find release
A haven from my unbelief
Take my life and let me be
A living prayer, my God to Thee

In these trials of life I find
Another voice inside my mind
He comforts me and bids me live
Inside the love the Father gives

In Your love I find release
A haven from my unbelief
Take my life and let me be
A living prayer, my God to Thee

Take my life and let me be
A living prayer, my God to Thee

Can I just SMACK someone????

I shared with a group of people that she has an inoperable tumor, is at peace, and is ready to be with Jesus. Immediately they started praying and "coming against the spirit of defeat"...

I was stunned. to. silence.

Finally, at the end of the very long-winded prayer, I said that we were happy to have them pray for healing, as long as it was for her ULTIMATE healing, when she would be in heaven.

And then I got up and left the room.

It isn't "giving up" to be at peace.
It isn't "wishing her dead" to be ready to let her go.

I wanted to just smack someone.

I guess it is a lack of life experience? Or they have never been with terminal cancer patients?

sigh...

School Daze

I just sent #2 child off to school. We had a tearful evening. She is quiet and withdrawn this morning. I don't want to "helicopter parent" but I would also like her teachers to cut her a break if she's not 100%. So I emailed and told them the situation. That was at midnight last night.

This morning as I wait for caffeine to kick in before I head to work, I find four (out of seven) teachers have already emailed me, assuring me of support and availability.

And such kindness moves me to tears...

Hanging on by a wing and a prayer...

me

Hospice...

Today we signed papers agreeing to hospice. We know this is right. She wants it. We want to see her at rest and at peace.

That reality is just harder for me to take than I thought it would be. . .

It will not be easier when she is gone. But it is definitely harder while she is still here and suffering.

I trust in a big God who can hold all of this pain for me... and who knows what we are walking through.

I am grateful for small things, like hugs and a bunch of daffodils (a surprise from a friend), and a cat who decided tonight of all nights, I was going to be her lap.

Thanks be to God.

For free: one uncomfortable couch

There is this couch in her house. When you sit on it, you either sink down in until your butt hits a spring, or you sit on a ridge of lumpy feathers. It's about 6 feet long. It's low to the ground. It's made of what one might call "durable fabric." There's not a worn place or rip anywhere.

We call it "the big un-comfy couch." I offered it, free for the taking, to some college students at church who always need furniture. They came to look at it and politely declined.

Did I mention it is ugly, too?

But here's the kicker. She keeps asking me if I am going to take the couch. We own a house with narrow rooms and halls, and the sucker will never fit up the stairs. I finally said, "no, we can't get it in our house, but I know where it will be going. Don't worry."

I think the dump will be getting it. I don't think the Salvation Army or Goodwill are going to accept it because it isn't in sale-able shape. Truth be told, I'm embarrassed to offer it to any one.

But it's free. One uncomfortable couch.

perfectly good

I have gone around and around with other family members. No one wants the clothes. No one WILL want the clothes. At least, not us or our children. We need to give them away. TODAY. She wants us to keep them...

"BUT... they are perfectly good!" she says to us...

Right.

Suits with 1970s lapels. Shirts with embroidery on the cuffs and collars. Purses that are made of PLASTIC!!!! leather. Puhleeease.

My kids are rolling their eyes and walking in another direction whenever a load of things comes home. Today I am going to do another purging of the closets. And everything is going straight from my car to Salvation Army. None of it is coming in the house.

She is a size 8 petite. I am a size 16, not-at-all-petite. Even the gloves (remember those? 13 pairs?) will NOT fit.

This is one more battle that I do not need to fight.

13 pairs of gloves

I have been packing up clothes and things that she can no longer use... when you are bed-bound, you don't wear wool suits or heels, and you don't need a purse. (She's convinced she has no money; we have given up on that one.) Linens. Clothing. Dishes. Pots and pans. A refrigerator full of molding food (we thought she'd go through rehab and then go home...)

But what did me in this afternoon was the 13 pairs of gloves (I counted them) which were in a box of winter clothes. Four pairs were ones she had been given for Christmas. The tags were still on them. Thirteen pairs of gloves.

They are all going to the interfaith center next week.

Thirteen pairs of gloves.

Oh God
May I not be so selfish and focused on me that I hoard up for myself treasures on earth. Thirteen pairs of gloves is only a reminder that I am far too self-focused as well...

But still.
13 pairs of gloves...

Oh God.

I don't know if I can take this.

Work. Ministry. Laundry. Dishes. Leaves. Shopping. Hospice.

And now, cleaning out her house.

I dissolve into a puddle of tears for seemingly no reason. Yet we all know it is a big reason. It is pre-grieving.

And it sucks.

Unbelievable. What a mess.

So today we went to try and help our relative work through some bills, because she has not yet relinquished fiduciary responsibilities to us. OK, that's fine, if she would pay the bills. But she got very upset and claimed that none of these bills were hers and someone had stolen her identity. She never ordered all these magazines and she never buys things from the TV.... (as she sits there in her QVC sweat suit with cats all over it... oy).

I stepped out of the room to let him talk her down off the cliff... and stood looking out the window at the end of the hall.

Oh, God, this is hard... I was thinking. And a nurse came up and asked, "are you OK?"

No, I said, but I will be. Then with a shrug, I told her we were trying to get our relative to pay bills and it wasn't going well.

She touched my arm, smiled and said, "I'll be right back."

And she brought me the instructions for how to file for mental incompetence...

You know, I'm just not there. I can't say it yet.

The woman with the brilliant mind is NOT gone. She's not...

Dealing with it

OK. The time for crying is over.

Today I started making lists. All of the things that fall to me...
- packing up the house.
- finding a storage unit because even though she can't live there, she can't get rid of anything.
- calling hospice, who tell me I need her prognosis and life expectancy in writing.
- calling the oncologist... only to find out that since I am not the designated health POA I can't get any information on her prognosis and life expectancy.
- calling the family member who IS the designated health POA and then sitting beside them as they make the phone call to the oncologist, and handing them tissues.
- canceling utilities, papers, and forwarding the mail... accomplished because I lied and said that I was her. (I learned. Lie.)

I'm home. Now I can cry.

Oh God. This sucks.

tears...

I don't think I have cried so much in one week. My eyelids are puffy. My nose is stuffy. My throat is aching from the sobbing.

I even went and bought cucumbers to slice and put on my eyes... I'm not sure that it did anything, mind you. Maybe buying the super-soft-lotion-tissues are what really helped. And cool washcloths as I fall into bed at night.

The grief and the impending loss is really getting to me. How long until she dies? No one knows. Are we wrong to allow her to choose hospice over aggressive treatment? I don't know.

I am so tired of crying. So tired.

Why this blog?

A little bit about me: I'm a pastor on the East Coast. I'm called to serve. That's what I was created to do. But I am also a part of a family with incredible needs.

Pastor or not, my story may sound familiar to you...

I am caught in what is called "the sandwich generation." I am willing to give and serve because that is what we are called to do. But that does not make it easy. I have a relative who has just been diagnosed with a terminal cancer. I'll tell you more about it as we walk through her diagnosis and its repercussions.

A few caveats...

• I'm sharing a story that is intensely personal. SO. No names.
• I'm sharing a story that thousands of other adults will experience in their lifetime.
• I'm sharing a story so that I can gain perspective by writing about it

You're welcome on the journey with me.

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