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.

Spinning Flowers

I recently participated in the Walk to End Alzhiemer's here in my community.  It was a very powerful and empowering experience.  It was humbling as well.  At one point we all held up our spinning flowers and an army of yellow(caregivers), orange (advocates), blue (folks with Alzhiemer's) and purple( folks bereaved by Alzhiemer's)  pinwheels filled the field.  We deposited our flowers into the hands of volunteers as we took off to march and when we returned we walked through a human made constantly moving "Memory Garden" of pinwheel flowers. Awesome.
When the walk was over most people retrieved their flowers, myself among them.  I was going to give it to mom, but as we now know, she didn't come home the next day as planned.  I put the flower in the ground by the patio.  Now as I sit, slowly regaining my strength from the flu, I watch that dynamic symbol of care giving.  Sometimes it spins furiously.  Sometimes it is still. Sometimes it suddenly changes direction.  When it spins really fast it looks like it is standing still.

That is as much as I can do , right now.  Observe, respond to the wind as it blows, and try not to get too dizzy.  Rest when I can.  Like the pinwheel, I am not now, nor ever was, in charge.


Amen, Amen and Amen

Perspective

One week ago mom came home to sleep over. She missed her cat and me.  She was so excited to get to cuddle with her cat, to spend a day with me, and to buy a bigger bed for her "new apartment".  She came home having lost some mobility. She was using a cane when I left her for respite but rolled out of the twin bed that comes with the respite room and bruised her behind apparently the day after she got there.  She uses a walker now most of the time but was beginning to use her cane again.  When she walks with the walker she looks a decade older.  She seems defeated. When she takes her cane in hand she swells with pride and is straight and power filled again.

I found her subdued, too compliant and quite sad.  I was sad too.  What made me crazy before; the 3 hour breakfast ritual, the feeding of my pets with constant people food goodies, the criticism of my cleaning and cooking skills, even the constant sighing and groaning, didn't bother me because I knew they were temporary.  I also knew that without her my world had become very empty.  I knew I really had missed her.  It was a good 24 hours but we were both exhausted when it was over.

I cried myself to sleep that night and woke with a nagging headache.

My sister took mom the next day as I stumbled through a difficult busy Sunday. Clergy workday! I made my appointments but was late.  I lost track of things and time.  My concentration evaporated in business. My sister sent pictures of the stuff they were buying for the apartment and questions about the bill for the facility by text and I could not face it.  I was hardly home by the time my sister called me to discuss her texts. My head was really beginning to hurt.

I was teary. Lonely. Tired. Defeated.
And my head hurt!

The next day, Indigenous Peoples Day/Columbus Day/Time and a Half for Work  Day,  I went to work, feeling odd and still holding the headache.  I was going to go mom's after work and help her get her room settled. Did not happen.  By 11A.M. I was back in the car on my way home with the worst headache of my life, too sick to work.


I got the flu.  I was so sick I could not get to the bathroom without help.  I could not move without pain.  I could not eat or even keep track of when I took the Advil to lower my temperature.  I needed a caregiver as I lost my ability to take care of me.

During my flu I used mom's tray, her cups with lids, her cuddly cat for warmth and her wisdom (when I could remember it) to write down what I could not remember and to ask for help. I got a one week glimpse into how helpless she felt living on the second floor when the stairs were unmanageable.  I felt some of the loneliness she felt when no one could come see me and I was too tired to or achy to use a phone or computer.  I felt a taste of her claustrophobia when I could not drive myself to the Dr. and had to ask my neighbor to drive me.  I felt a bit of the betrayal she feels from my brother when I needed my husband and he kept leaving to go to work, letting my unemployed neighbor come by and make sure I had soup and drink.

I am finally feeling a bit like a human.  I am only quarantined a couple of more days and I can finally handle food and the stairs again. (Tamiflu works!) Tonight, as I was coming back upstairs after being with my husband watching TV, I went to gather the tissues I had let fall when I was sicker and found my mother's cane!  She had propped it in the window, behind the chair when she had decided to take her walker on our shopping trip.  Together, in our tired and transitioning state, we had forgotten it and didn't notice.

My husband has been to check on mom three times since I last saw her.  She never asked about her cane.  I put her cane in a pile of things for him to take to her in the morning.  I cannot go yet.  I miss her.  I don't want to lose her.  I want her to keep trying to stand and walk tall.  It is depressing and defeating to be forced into helplessness.

I miss my mother.  I am grateful, in a very sick way, that I got this taste in a small way of what it was like to be her in our house.  It is helping me embrace her being with other elders in "the home." I cannot wait to see her Tuesday, when I am no longer contagious.

Grimelda, thanks for the worst headache of my life, four days of intense weakness and pain, sleepless nights and an overworked husband.  Thanks for gastric distress, high fever, a foggy brain and forced isolation.  Thank you also for good friends, excellent medicine, health insurance and Tamiflu.  I needed that.

Amen Amen and Amen.

And so it goes

Mom has decided she wants to stay at the facility where she went for respite.  I miss her.  The cat misses her.  She misses us. My sister is relieved. When does this start feeling like a good thing?

I'm listening.  Any time now.  When?