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travel plans still evolving
alz+
Posted: Thursday, March 15, 2018 6:25 AM
Joined: 9/12/2013
Posts: 3608


I depend on Keeper (my husband) to make my life seem as if I am doing really good. Without him I have to explain what is happening and what might help me WHILE BEING UPSET.

also I cannot speak, walk far or make a sandwich without CBD oil so making a 2000 mile journey is a big deal. My daughter has spoken to airline people and gotten costs etc and it looks like it is happening within a couple weeks.

I am excited and terrified. So many flight are canceled due to weather and airports, crowds, authorities all make me fold up. Husband has seen my daughter with me and watched her handle me, she is a natural. She is not going to be there with me, I will be at her dad's house. My son and his kids will visit me and their dad for a few days as part of my trip west.

I packed a suitcase because one morning I sorted my entire wardrobe and knew what would work.

Just writing this made me get butterflies. The plan is to sedate me, have wheelchair, not speak to anyone but daughter, and give myself 3 days to adjust without doing anything else. Then we will see.

So it looks like this is going to expensive and a challenge but the intense sadness of not seeing my grand kids again or being able to say good bye in person to a couple people haunts me. I have a feeling it is now or never.

In the end my son will understand my situation and everyone will recognize how much my daughter does for me, daily by text or email and appreciate all husband does for me.

When I get back home I will have nothing left hanging over me and that seems worth the risks.

It is going to be expensive (for us) but trip will be happening shortly unless something else develops. I am hoping to make a connection with my grand daughter and to further my friendship with my grandson. 

thank you to all who gave me tips. the worst likely thing will be a breakdown and then having to get me back here.

going rogue. stay tuned. love you all!


Andrew60
Posted: Thursday, March 15, 2018 6:48 AM
Joined: 7/17/2017
Posts: 342


You are a brave woman ALZ, and I will be praying for you. After reading all the steps you have to go through, and the problems you’re dealing with, it makes me feel like a whimp when I think back about my perceived problems I had when I flew in January.

Im very happy you are willing to go through all the problems of travelling in order to spend some quality time with family. I truly hope they understand and appreciate all you went through in order to make this visit happen.


dayn2nite2
Posted: Thursday, March 15, 2018 10:49 AM
Joined: 6/20/2016
Posts: 3466


Are you planning to mail your CBD oil to your destination?  Because bringing it on the plane can cause problems if you get a TSA agent who decides to make an issue of it.
alz+
Posted: Thursday, March 15, 2018 11:13 AM
Joined: 9/12/2013
Posts: 3608


Since it is California I can call a dispensary and have it delivered to the house!

Andrew - What was it like for you to fly?

the last time I flew was 10 years ago and it was before I was diagnosed. I used to fly co-pilot with my dad and have loved airports but that trip I could hardly function, a plane was delayed, I was lost at the airport, trembling. I went to a desk for people with special access and said I was having a breakdown and needed help getting to a hotel. They gave me a voucher for the ride to the hotel and the room! These were stolen from me on the way to the hotel.

In a panic they sold me a room, it was room 666. I went in and the floors were wet. I had not eaten in 12 hours. Had to call front desk for help, they thought I was crazy but sent someone to the room and yes the carpet was soaked so I was moved. The young guy who moved me called a restaurant for me and had food delivered. Next morning my whole body shook and by time I got home I was total wreck.

10 years ago I could not handle it! This time I know what is wrong with me (I get overwhelmed) and my daughter will be the boss of any situation.

I am shaking now thinking about it. I am clinging to Michael E's statement that he throws down a cocktail before getting on a plane and he travels all the time. So my plan is to wear a diaper, take an ativan, and hope to sleep thru it esp the trip from last airport to the house where I will stay! Traffic is a top fear of mine.


jfkoc
Posted: Thursday, March 15, 2018 12:23 PM
Joined: 12/4/2011
Posts: 21246


are you accustomed to taking Ativan ?????? Many have a paradoxical reaction to it.

Please have the CBD delivered before you leave.


Andrew60
Posted: Thursday, March 15, 2018 1:07 PM
Joined: 7/17/2017
Posts: 342


Alz - There is no comparison to my issues with yours, as mine are much more minor.

I dont like being around a lot of people, or in tight spaces, and both these issues are fairly new for me. We splurged for first class, so we had plenty of room.

I also was afraid I would be stressed out due to flying, and any stress for me triggers many other cognitive issues. I brough my own headphones, so between TV and music, I stayed calm.

I travelled with my wife, so as someone on this forum wrote “she is my BUB, back up brain”, and she handled any issues that came up.


Iris L.
Posted: Thursday, March 15, 2018 7:02 PM
Joined: 12/15/2011
Posts: 18514


Write this down on an index card:  Ativan + alcohol (wine) can be FATAL!


Let Keeper or your daughter hold it.  If you are like me, you will forget.


I don't want this to happen to you!  Choose one or the other.  And as jfkoc says, Ativan can have a parodoxical effect, and make you agitated instead of sedated.  Try the prescribed dosage at home before the trip to see how it affects you.


Aside from the combination of chemicals, your plan sounds good.  The weather is beautiful today.  Just a couple of days ago there was some rain which resulted in a huge mudslide that will close a major commuting road for a week.


If you have a particular anxiety relief method, use it.  I think you will rise to the occasion, Alz+.  Remember, you taught us not to be fearful of what confronts us, but to observe with interest!


Iris L.


alz+
Posted: Friday, March 16, 2018 7:28 AM
Joined: 9/12/2013
Posts: 3608


Iris - I am allergic to alcohol, I do not drink,  Michael said a couple cocktails helps HIM relax before flight. Good catch as someone might have tried cocktails and sedatives! I used to take Ativan so I still have plenty and used it yesterday before a doctor visit, do not want to use daily but this is the kind of thing it will help.

I have used the technique of going from feeling fear to observing it and am practicing now as anxiety wells up in my gut, I think I calmed myself doing that in the car yesterday.

****

BUB = Back Up Brain !!!!

This is wonderful. It is so nice to use someone else's brain, and if the back up brain gets used to it like when Keeper just answers for me is like falling in love. To think I was going to leave him a couple months ago, then thought "maybe he needs medical care" and how that led to finding low B12 to watching him recover week by week ...

I  assumed I could not be the giver anymore and then found out I could, and it felt good to help him - then he learned I am still capable of caring for him too. We recovered our friendship, best help for us was to STOP TAKING OFFENSE, which is my best advice for people  providing care to people with dementia. If someone is angry or upset turn off the volume and observe, what are they needing? Turns out it works with anyone anywhere any time. 

***

Yes to another good point, have oil delivered before I get there.

Pretty sure I will be arriving in California the day before the Big One hits. I follow an earthquake observer on youtube ( Dutchsinse ) who found quakes happen in predictable patterns, west to east and he explains why this is sooner than later situation. Figures.

 Also the house where I will stay is close to the Russian River so I can go rock hunting there. I spent many summers at that river beach with friends who have now passed on.

thank you for ideas, comments and support. I think about advice here for days after, it helps.



alz+
Posted: Sunday, March 18, 2018 6:34 AM
Joined: 9/12/2013
Posts: 3608


tickets are booked. I could not understand the ticket information but will be leaving Friday.

I had cleaned up my clothing mess last week and  chose warm weather stuff for the trip. It is still cold at night there and not over 60 most days so have to re-choose and will ship some stuff ahead.

My gut is in anxious mode and will have to find a way to calm myself while preparing to leave.

***

Iris- I took a quarter ativan to see how it affects me and I could still function, the calming part did not begin though for 3 hours and then I got very tired.

Also will have my daughter get me oil from dispensary as it turns out people still need a card in California to get inside. This board's advice is making this possible. So thanks!

I do suspect this is going to be our one and only family reunion held during an earthquake. If we are all gathered in one place it may be really bonding.    

Or I could get blamed. "It was MOM's  idea!" Then it becomes family Legend.

 Hope my dog gets enough fun time when I am gone. So, I will check in if possible, and if not I will have stories to tell in a month or so.  Monday I have a biopsy scheduled for a thing on my back so I better pack today.

seems crazy and wonderful 


Michael Ellenbogen
Posted: Sunday, March 18, 2018 9:27 AM
Joined: 11/30/2011
Posts: 4460


I hope you have a great time. 


llee08032
Posted: Sunday, March 18, 2018 9:32 AM
Joined: 5/20/2014
Posts: 4408


Alz+! You're doing the trip! How wonderful. Hope you have a great time spending time with family. 
Iris L.
Posted: Sunday, March 18, 2018 5:09 PM
Joined: 12/15/2011
Posts: 18514


Alz+, I'm sure you will have a great time with your family!  I pray that the travel will go smoothly and in fact, be enjoyable.  I'm glad you had a trial run with the Ativan.  Did you mention wearing noise-reducing headphones?  Pick them up now, not at the airport; they are expensive.  No, we are NOT having an earthquake!  (fingers crossed)  Bon voyage!

Iris L.


obrien4j
Posted: Monday, March 19, 2018 11:04 AM
Joined: 11/18/2016
Posts: 451


You got this, Alz! Remember RVing it a couple months ago??- You can do this!! Breathe deep, and just keep your eye on the ball! You have people in your corner helping you, don’t be scared, you’re gonna be ok, I just know it!You’re stronger than you think, smarter than you know and braver than you believe. Can’t wait to hear all about it!!
alz+
Posted: Wednesday, March 21, 2018 9:17 AM
Joined: 9/12/2013
Posts: 3608


I gave up trying to pack a suitcase, it was making me super anxious and Canada (?) reminded me to lower my expectations, that was huge help. So I  crossed off my PROBABLE list:

 a birthday party for everyone with the cone hats and party favors, 

a dinner out that requires better clothes,

 anyone telling me what "good sport" I am,

 no place on The Voice, 

not running for office,

ever getting a ride to a Hospice Thrift shop and finding some ultimate wonderful whatever.

sleeping - ever or at all, call it success  *  bathing - same   etc  etc  etc

****

Have left water running, "lost" a camera I bought last december and other things have also gone to the disappearing place. Th missing camera was going to send me over the edge so I told myself it was too hard for me to figure out how to use it anyway (no help) and then after days of searching I thought it might be in the loft space...and it was, in a bag, inside another bag, under a mattress pad on a broken antique loveseat. No memory of putting it there so how did the idea come to look up there? Try this stuff on vacation!

this morning I packed the camera to ship today, which was astounding. 

I have misplaced my TIME section on my brain files. Somebody deleted my TIME app. At the pool I watch the clock because I am there about an hour including locker room showers etc before Keeper arrives to give me ride home. For months I have stared at the clock, counting this way and that and then finally asking someone what time it was etc. This week the TIME department closed up shop, goes for clocks, watches, schedules, calendars, days, months ... still know it is 2018 but could not care less! When an hour passes, it is over. If someone asks me a time related question I do a Trump and say anything. "Oh, about 2 weeks ago," or "Oh I have only been here a few minutes."  Good bye hours! Hello NOWs.

Had the mole removed, got refill for shingles pills and ativan, still scared of leaving the yard! "Housebound" has become "refuge". 

My lowered expectations for myself are :

probably going to cry a few times, so what

not going to wear my thrift store Armani black dress at an "event", so what

Some clean underwear and a toothbrush is a good job packing. Right on!

If daughter in law does not call child protective services on me the trip was a wild success

If I start to meltdown and can't get away, I can shut down, go silent and still. Can escape trouble. Brought big shawl and have sunglasses.

******

Iris- I think if I PRETEND to be confident, and don't make eye contact, and get the headphones you all seem to know about, I can avoid being challenged or taken to the little room at airports.

I am so deaf - still think headphones could be HUGE help and I would never have thought of it.

OK. Back to a few hours (what are hours?) holding the hair texture spray bottle that makes my head of cowlicks look artsy and wondering if I should mail it, leave it, send new one or have flat hair etc - before putting it back  someplace I won't remember. Ha!

taking my show on  the road...love you, have some fun!

ps: lisa ramey - I have not bought a pack of cigarettes even with all this anxiety but I still imagine me leaning against a sunny garage having a smoke with  you! it helps a little.




Jo C.
Posted: Wednesday, March 21, 2018 10:09 AM
Joined: 12/9/2011
Posts: 13599


You are doing good.    You are making realistic plans in response to any anxious thoughts that pop up and healthily letting go of them.

 I too am an "over-thinker" whenever I fly or go anywhere.  You know those, "just in case," thoughts that are not worth two hiccups in a windstorm.   That is just me and like you, I do not ruminate and have learned to let go.

You can plane early.  When on the plane, you can get in your seat, get belt and earphones on and close your eyes keeping them closed as you wish and let muscles go loose, breathe and rest.   I love to fly but close my eyes often; it is my own private space. 

No reason to overpack; there will be a washer and dryer where you are going, so no need to take too many outfits.

It is California; no need for fancy dress to go out to eat.  Casual is just fine.  It is about the visit and if you find a time or two that you are not feeling centered; just do the gracious lady thing . . . . "I am going to go and lie down, I am still feeling tired from the time change."  Then off to your room with your door shut.  A good lie-down is good for our spirits.

You will have a good time making connections with folks and I bet you will find you are warmly welcomed and appreciated.

How long will you be in Northern California?

I so hope there is a computer you can use to drop us a note, we will be thinking of you out there.  Bit rainy right now in SoCal where I am today and tomorrow . . . BUT . . . NO SNOW!   That counts for something.

 Happy trails to you,

 J.

  


lisabramey
Posted: Wednesday, March 21, 2018 11:02 AM
Joined: 3/20/2015
Posts: 96


Dear Alz+, 

I have been following you in your adventure. Anytime for that smoke. I still smoke and do all the "frowned upon" things here on the board.  My money is on any disease that will beat Lewy Body to the punch!

Now I want you to know I am rooting for you and hoping your time is fabulous. I am once again the boards odd ball,  never flown, hell never been North of the Mason-Dixon Line. Sad indeed uh?  But I do wish you well and I hope you can keep me updated if you can. 

You are blessing to me,

Lisa


jfkoc
Posted: Wednesday, March 21, 2018 1:18 PM
Joined: 12/4/2011
Posts: 21246


make a list of products you use and mail it ahead!!!
Iris L.
Posted: Wednesday, March 21, 2018 5:31 PM
Joined: 12/15/2011
Posts: 18514


Alz+--the headphones idea came from Michael.  I have had problems with packing.  But I have become a fan of the pack-less club.  I focus on some underwear, a comb and a toothbrush.  I usually wash clothes out in the sink at night when I'm traveling, if I can.  You used to live in CA, so you know, as Jo said, it's very casual.  Lucky you, to find an Armani dress at the thrift store!  Your plans are coming together!  When are you leaving?  Do you know how long you will be staying?


Iris L.


Jo C.
Posted: Sunday, March 25, 2018 8:43 AM
Joined: 12/9/2011
Posts: 13599


Well; travel day was on Friday, and alz+ has been in California for a little over two days.  I am thinking of her and hope all is positive.

Weather seems to be clear, so that is good.  Did she ever say how long this trip will be?  Hope it is a happy one.

 J.


llee08032
Posted: Sunday, March 25, 2018 9:18 AM
Joined: 5/20/2014
Posts: 4408


I thought she said she would perhaps have access to internet and would check in. Hope to hear from her in between her having a joyful time with her family. ((((((Alz+))))))
eaglemom
Posted: Sunday, March 25, 2018 9:25 AM
Joined: 3/7/2012
Posts: 2774


I too was wondering how she was doing. Let's hope she's in her 3 day rest period and will check in later.

eagle


Iris L.
Posted: Sunday, March 25, 2018 9:03 PM
Joined: 12/15/2011
Posts: 18514


The weather has been great this weekend.  I hope Alz+ is enjoying the fresh air and absence of snow!

Iris L.


llee08032
Posted: Monday, March 26, 2018 9:27 AM
Joined: 5/20/2014
Posts: 4408


Absence of snow is good!
Jo C.
Posted: Monday, March 26, 2018 9:46 AM
Joined: 12/9/2011
Posts: 13599


llee should know!
llee08032
Posted: Monday, April 2, 2018 9:30 AM
Joined: 5/20/2014
Posts: 4408


I feel like a detective reading Alz's post and trying to figure out how long she's going to be away? I'm thinking the longer she stays the better the time she's having.

We got some snow again last night!


Jo C.
Posted: Monday, April 2, 2018 10:03 AM
Joined: 12/9/2011
Posts: 13599


As of today, it has been eleven days since alz+'s flight to California.   So; if her trip was for two weeks, (and we do not know if that was the length of time), that would mean she would be heading home maybe between Thursday and Saturday . . . . perhaps.  However, in one of her above Posts she mentions having stories to tell in "about a month or so."  That would leave us until about the end of April, "or so."

 How funny we did not specifically ask how long a trip this would be.  Each morning I do check to see if she has gone online and Posted a report from California, but not yet.  

 We shall have to wait and see.   Still hoping this is being a positive experience.

Waiting to hear from her is like waiting for Christmas when one is five years old . . . . it never seems to get here.   Weather in California has not been bad.  It has been ranging from mid-60's to high 70's and some areas to the low 80's.  I imagine she is not missing the snow too much.

 J.