not quite lost

I have way too much to say and no time to say it.  I feel lost in my head. 
Today I found a new help. A peer support group for chaplains in my area and ...I am no longer quite as lost. Just sojourning.
Thank you Grimelda.
Amen Amen Amen.

Scrap over Scrabble

I played a game of Scrabble with mom.  It has been a long time since we have played one on one.  When she was in my house she always had some task I needed to do for her and we had not "played" for over a year. Scrabble has always been a favorite for us.  Mom raised us on educational toys.  No collecting of action figures for us.  Maps, geography games. chemistry sets and hundreds of variations of word games comprised our rainy day pastimes.  When I was in High School, the English teachers from my school gathered in our dining room daily for intense Scrabble games.   We were "hard core"!
Just last week mom had bragged to me how she had 'won" scrabble as if it was the proof she was not demented like all those "old people". 

I noticed by fourth turn that she was not "getting it." I played less competitive and more cooperative to make it fun.  When she tried to play two words in one turn because she wanted to have it be that way, I had to notice. I helped her remember the rules.  When she insisted that "hooky" was Hokey, I let her have it.
When we finished she had lost to me for the first time.  I could not pretend to myself that she was not deteriorating mentally.  Luckily mom just thinks I "got all the good letters."  I heard that before. 
The good news? We had fun.  I will hang onto that.

May we always find the beauty in each encounter and let go of the "winning" so easily.
Amen, Amen and Amen.

out from the ashes, again

Today was support group.  I look forward to support group as if it were the only light in a storm.
Today did not disappoint.   It is no secret I am struggling right now.  I have been more depressed than this but I don't remember ever being this tired.  I must have been, but I don't remember it.   All this week I have been struggling to regain my physical strength, and my emotional fortitude.

One of the most outstanding moments for me today came as we were exploring ways we feed ourselves, healthy and unhealthy, when we are trying to refill/renew from the constant stresses of caregiving.  At one point, it was my turn and our group leader asked me, as she had everyone serially, what do I do to recharge.  It was to be something other than escape (like reality television or sleeping). I read that as something intentional rather than just surrender.  As I struggled to think of ANYTHING, I realized how depleted I truly feel spiritually.

I finally admitted all I wanted to do was crawl into a corner and sleep for a year.  "depression", my recurrent companion. So, been there, done that.  What worked in the past to get out?

oh crud.

Pray. Check.
Meds. check.
Therapy. check.
Whine appropriately. Check
But what was the one major thing I did every time in the past?  Before the others?

I quit my job!!!
 (did I just do that by moving mom?)
I took a long break from whatever career/job I had and let myself BE. I took  from three months to 18 months, and retooled for something else. I went to school, changed careers, three times I have burned out and three times I ended up...moving on to something new.

Crud. Really?
I kinda like this job.
*sigh*

Before I do anything so drastic, again, I am going to really think on this.  Oh, who am I kidding, I am going to Grimelda.

Grimelda, who some call god,
ummm, Really?
Listening here.
Any time.

I'll be the one napping and waiting for enlightenment over there in the chocolate aisle.

Amen, Amen and Amen.

finding home

I actually wrote this a year ago.  I didn't finish the post and it was sitting in "drafts".  I am amazed that I am yearning for a different burnout.  Progression, slow but steady.  Hate he disease. Love the lessons.

October 2010

I finally got away, really away, an airplane trip and a week without work or mom.  I do feel rested.  It was good. I went to Sedona, Arizona, someplace renowned for its physical beauty, hiking, Native cultural sites and spiritual healing places.  I enjoyed the hiking. We joined friends there for the first two nights and that was a good time.  As usual, I ended up listening to the stressors and greif of others, but this time I didn't have to.  I care about these people and their stress is so much more than mine, I found it illuminating.  I feel affirmed that I actually have achieved more balance regularly. I like my life, crazy as it can get, and we are doing OK. The views were incredible, in spite of the coolness and recurrent rains.  There were all sorts of places where folks were clearly seeking connection with "Grimelda".

Thanks Grimelda!
Amen.   Oh and I posted twice today... It happens rarely.

Test Anxiety?

I listened to a special on Alzhiemer's Disease on WBUR this morning.  Today's segment had people on it reflecting on whether to get themselves tested or not while they are asymptomatic.   There is a family legacy I hold of "sweet demented old ladies" as my precious daughter calls us.  On the program the siblings whose mother has early onset dementia declined to get tested.  They did not want to know.  Since there is no treatment or cure, what was the point?  They felt it would just have them second guessing if "this was it?" when ever they were forgetful.

The series is called fade to darkness and I recommend it.

Fade to Darkness

My mom went on Aricept long before she was symptomatic to the rest of us.  Now maybe her dementia isn't Alzhiemer's, but it was diagnosed as that when my grandmother also had it.  Is it possible that she has been spared such a fast decline because she chose to be treated early?  From my own perspective, I have not been tested, not because I worry about knowing.  I pretty much assume, to my husbands chagrin, that I will get it.  No. I don't want to be tested because then I would have a "pre-existing condition" and fear losing health insurance coverage.

What about you all?  Most of the folks who read this are family caregivers. Why or why wouldn't you get tested?

Games

I was able to call Mom today and she answered the phone.  She sounded great to me.   We had a chat, so similar to what we used to do before she moved in, it was delightful.  She is having trouble making friends, but she is trying.  She is looking forward to having her new room which will be available in a couple of more weeks.  She told me about the ladies that could not play scrabble anymore who were mad at her for trying to help them.
She shared a conspiratorial giggle that J_ didn't remember how to make words but had all the good consonants.  Mom only had vowels.  Mom felt so superior because she still can play word games and enjoys being so smart.
We talked some more, about dinner and flu shots.  She reprimanded me on trying to do too much.  Just like before.  It was almost as if she were her old self!
I had not seen her nor spoken with her for over a week. I asked her if she had tried to call me while I was sick and I had missed it.  She told me that she doesn't do those phone things. Phones don't work for her.  She could not figure out how to make these "new ones" work. She could not remember what  or how many days I had been gone. She confused me with my sister trying to figure it out.

There are no numbers. Just words. No calendar. No clock. Just "then" and "you know".

I remembered why she moved in.

It will be ok.  I can do this.  She can do this. We will survive. Now to become grateful.

Amen.

Time

....................waiting to begin again even beautiful days are long.