Sunday, October 12, 2014

Chapter 12 "It's always tea time."

Busy busy week.  Made 20 dozen tamales for Food for Thought.  I could have gotten more donations, but I was SO tired of making tamales!  They came out delicious, and two people were generous and gave more then I requested in trade for a dozen tamales.  Two of my sisters and one of my nieces helped make the first fourteen dozen!  But I ran out of meat!  So Friday night I went back to the store, prepared more meat, made the sauce, and today put five and a half more dozen together and cooked them, and I'm finally done!  This small effort raised over $400 for the AFTD.  I have ideas for next year - to maybe only sell them frozen, and spread my efforts over a couple of weeks!  Maybe even charge a little more - and get some of the meat donated by a local grocery store.  North Market Spices donated all the spices for the sauce - what a difference a good fresh spice makes in flavor!  I was very touched by all the folks supporting my efforts - helping make the food, making out tags, supplying bags, buying tamales, donating spices, and donating money when they didn't even particularly like tamales!  (They don't know what they are missing!!!)  I also welcomed the opportunity to tell people about FTD.  For instance, when I was at the local hardware store early on tamale construction day to buy some cheap plastic putty knives to aid in spreading the masa on the corn husks, the cashier asked what brought me in so early?  So I told her about what I was doing, and we talked for awhile.  She shared with me about someone she knows with FTD - a local woman who was first diagnosed with Alzheimers in her mid fifties, but more recently that diagnosis was changed to FTD.  She praised me for my efforts and admired me for my strength....????  I of course thanked her.  But I felt falsely admired - that is a strange way to put it, but I can't think of how else to say it.  For me, this has been challenging, but all the strength has come from others.  The burden, if that's the right word for it, has been shared.  I am so lucky to have a large family - and sisters who are always there for me.  And my husband's diagnosis has put so many other things in perspective - especially work.  I've worked for the same non-profit for 30 years now.  When Dave began losing jobs, they allowed me to increase to 40 hours a week - and I threw myself into my work - though it was stressful at that time of our lives, it offered financial security and some peace of mind that we would survive.  The last couple of years have been very stressful at my work with a merger and new leadership - it's basically like working a new job with new expectations and proving myself all over again, not taking much time off, working lots of extra hours.  I've had an epiphany since then.  Not really by choice at first, but by necessity.  Other matters have taken over my thoughts - I've replaced ruminating over when a budget is due, or what quarterly report is next, or how long my "to do" list is getting at work with my husband's issues, and more recently with my dad's issues.  I actually find my frame of mind is much better at work - because I've been forced to find a balance.  I can't think about work ALL the time.  Let's face it - my family is more important then my work - and my family crowds my thoughts now when I'm lying in bed trying to go to sleep.  There is a fine line between taking care of my family and taking care of my job - and the two are so intertwined because if I don't take care of my job, I can't take care of my family.  But before all this, I thought about work too much - I felt frustrated, trying to meld together two different systems of doing things into the best practice for the new organization - never feeling like I was accomplishing anything - working so hard, so much to do, and the feeling of such dissatisfaction with myself because I was doing nothing well or not doing enough - probably all in my mind because I spent so much time worrying about it when I wasn't at work. I could only concentrate on what I was doing wrong for this "new" company, what I needed to do better - now I've been forced to find that balance - and because I'm not thinking "work" 24/7, I don't know, it just feels better.  And when I'm done with work, for the most part, I have many other things more important to consider and plan for.  Work is a break from life stressors, and life stressors are a break from work.  Weird way to look at it, I know.  I'm in a honeymoon period with this disease our family is living with - our life has not noticeably changed once we got over the initial shock - it's been interesting to do all the research and learn everything I can and see what I can do - tell people about this disease - make people aware - feel my main goal is to make life count.  It's all still pretty surreal.  The new perspective on what's important in life is a welcome change - and the most significant change since getting a diagnosis.  Dave's progression has been slow and steady - but not really "bad" yet.  When it gets to that point, I don't think I'll be strong - and I know I won't be able to handle it with out continued support and strength I can draw on from others.  I'm sure my perspective will feel different then - maybe the rose colored filters will come off - maybe I'll begin to feel angry and sorry for myself.  But for now, there's a balance, it's my life, and it's good - and it's my new "normal".   

There was another seminar to attend today on the legalities of elder care (which I ended up not being able to make it to!)  - which seems weird to say out loud - elder care - I guess my husband is almost 64 - which is older - but elderly??  I picture a much older tiny person with wispy white hair, a wizened face, maybe a little curve to their back - that's not my husband at all.  He is robust, loud, dark hair with some gray, still appears so full of life.  Just not the life we once imagined.  But his issues are those, or will be, of the elderly.  Mine will be too one day.  But trying to plan for a likely outcome of his disease, what I think we'll be facing seems out of place - friends of mine are dealing with these issues with their parents - I'm doing it for my spouse.  Something doesn't seem right about that - I think we're sitting at the Mad Hatter's table for a tea party, and things just aren't what it seems they should be.  But isn't that true about all of life?  I was talking with my brother today - about life - and about "normal" - it's actually what's normal that changes - what was normal ten years ago or five years ago, or even last week, might not be what is normal for today.  He was so right - at times we might long for "things to get back to normal" - but what's happening right now, whether it's helping a friend, or a family member, or a parent - it's the normal for today.  It is what requires our attention for today.  I don't want to wish this away, waiting for normal - plus, normal is different for each of us.  Dave's normal is certainly different from mine - and my normal is different from my dad's or my brothers or my sisters.  Literally, it means the usual, average, or typical state or condition.  And it brings to mind why I have always enjoyed going to stay with my brother's family to run away for a few days - I don't really want to "do" anything - just see what their "normal" is, because it's different from my "normal".  I can picture them in their kitchen, or on their front porch.  I can picture Phin on the chair in the living room with his leg up over the arm.  Their normal is a peaceful serene place for me - it's where I go in my mind at stressful times - sitting on their front porch - just being quiet, or engaged in lively conversation, or having a drink, or taking a nap.  I guess I have never thought of that before. 

So anyway, my normal is kind of like the Mad Hatter's tea party - where nothing seems normal.  Sure makes life interesting!

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