Chapter 13 "Why, sometimes I've believed as many as six impossible things before breakfast."

I think I'm going to take some of the magic dust I got for my birthday and go somewhere.  Not too far away.  But far enough away to get away.  To rebalance - recalibrate.  Maybe a cabin somewhere in the hills.  Fall colors in the trees.  Maybe a little rain.  A couple of good books.  A fireplace.  Better yet, an outdoor fire pit.  Some music - old stuff - John Denver, James Taylor, Eagles, Joni Mitchell.  But also some Jimmy Buffet - some fun stuff!  Sounds heavenly.

I've been under the weather for about a week and a half.  I don't get sick very often.  In fact it's been a couple of years.  But this bronchitis hit me like a truck.  I sometimes have days where I don't want to go to work, don't want to get out of bed.  But with this bout of bronchitis, I couldn't get going even if I wanted to.  It was a bit of a reality check to realize how much I take for granted waking up every day and feeling pretty healthy, despite all my bad habits.  I'm sure the stress of the last few months helped to bring me to the point of hitting a wall - mental health has so much to do with physical health.  Not only do I take for granted my health, I can't even fathom going through life feeling so fatigued all the time - something that plagues so many people every day.  I feel like I lost a week and a half.  I couldn't go see my dad - I didn't want to take the chance of getting him sick.  Missed a couple of days of work, worked a couple of days where I was basically missing.  Didn't accomplish a lot, at home or work.  Ugh.  But I woke up today, realizing I was going to get back to normal (and what is normal???) - feeling like I was back in the land of the living.  So I dove back into it all today!  I'm realizing it's going to take awhile to be 100%.  Once again - the cosmos is telling me to slow down.  So much for all my new perspectives over the last couple of months - of finding a new balance - of making the best of everyday!  The need for occasional recalibration is a fact.  I can come to conclusions about how to live my life, but I need to be more mindful of practicing that and taking care of myself.  Vitamins, exercise, vegetables, sleep......

I'm getting back to my quest this week.  Just today got the final word on Dave's driving evaluation - he's good to drive.  Contacted Social Security again - he's supposedly been approved and should hear officially in two weeks.  On Friday, I call a hotline for seniors to hopefully get some guidance on what happens to retirement funds we have if Dave needs to go into a nursing home - what are assets the would keep Dave from qualifying for Medicaid, and what assets would the state have a right to as a part of Medicaid recovery.  Maybe Dave won't ever need to go to a nursing home - maybe he'll be around another twenty years!  It's scary, and selfish, to wonder what will happen to me if he gets really sick - and dies.  I've always thought that at least I have the house to sell and have some money to live off of, but that won't happen if Dave needs to go into a nursing home.  When he began getting his retirement from PERS - which isn't a great amount of money after the medical insurance premiums come out - but it is set up for the same amount to come to me upon his death.  Will the state get that?  Is my 403b plan through my work going to be mine?  I have to figure out if I change all my beneficiary information to my kids?  Or to a trust?  Or do I just trust that things will work out, that Dave will just be here at home, that we'll be able to manage.  It's funny - I'm usually really good with going with the flow - with adapting to how things are - but it really shakes me because I'll be doing it alone for all intents and purposes - I'll have to figure it out myself - I'll have to make it work.  I know it's been that way for awhile.  But knowing it'll be that way for the rest of my life - and that I have to make some plans - in case I die, or in case I live - just seems so surreal.  But I have a long time to get used to the thought, I guess.  And, many people are doing this everyday right along with me.  They are going through the same seemingly impossible situations - no, in fact, they have far more troubles then I do.  I have to remind myself that I have many people who love me and will help me through all this.  So I won't be doing this alone.  I won't be able to do it alone.

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!

Chapter 11 Cheshire Cat

I'm not certain why, but the Cheshire Cat in Alice in Wonderland reminds me of my husband.  Sometimes he's very present, and sometimes he seems to fade into the background.  Today was a day when he was very present.  We had a birthday party to attend for a niece - actually a grand niece, I guess?  I saw Dave interact with more people then I'd seen in a long time.  It seemed he was enjoying himself.  I think all my family members know now of his disease.  They know now he isn't choosing to ignore them or to not interact.  He's just not sure how to start up a conversation, and he in part doesn't realize what he's "supposed" to do in a social setting.  I felt so touched by family making a point to talk to him, to give him a hug, to try to start a conversation with him.  And he responded well!  I heard him tell a couple of people about his disease - he showed off his awareness bracelet that he is wearing now all the time.  He asked me the other day if he could take some of them to the senior center where he works out, because he's talked to a couple of guys there about his disease.  WOW!  He knows he has it, he knows it will probably get pretty bad eventually, and he finds it to be a topic of conversation.  It is so good to see him having some social interaction instead of just sitting in a corner or going off by himself.  And he actually seemed to be more himself.  The Cheshire Cat was in total view.  He did good!  It is kind of funny - I feel a little like a parent who's child had a really good day at preschool and played with the other children.  It's a good feeling!  And I felt really proud, as silly as that seems.  I saw a glimpse of the old Dave - not the really long ago Dave, but not so much a "faded" Dave.  He seemed a little "muchier"!  Later this afternoon, my brother-in-law and my niece stopped by.  He wasn't certain who my niece was - she's been out of state and even out of the country quite a bit the last couple of years.  But once I told him who it was, he was very warm and glad to see her and stayed with the conversation a little.  Exactly what the doctor ordered!  It made for a good day.  I feel so thankful for the family I have, and their understanding of his disease, and their efforts to reach out to him and engage him in conversation and life.

He's actually working with a new client through home health care.  He's only had one morning with a gentleman so far.  I'm not sure how long it will last - how long til the gentleman might feel uncomfortable with him.  But who knows?  If we ever get the driving assessment report back (AAARGH!), we may find he shouldn't be driving at all, and it may be over before there is any choice in the matter.

I've gathered lots of information on the legal and financial issues we need to consider in planning for the possible long term of this disease.  I now need to look it all over, plan my questions, ask some more questions of professionals in the aging arena to formulate MORE questions, and go back to the attorney.  I know anything put in place can be changed, and the most important thing is to get the power of attorney and healthcare power of attorney in place for both of us - and I guess having something in place immediately that can be changed later is the better plan.  I don't like not knowing everything I need to know before making a decision - and I'm one who always suffers "buyer's remorse".  But I will just need to jump in and get on it!