Constant Worry

I never thought I was a worrier.  And I wouldn't in regular circumstances consider myself a worry-er.  I don't stress over many things, but with this shift in roles of caring for my parent I think I have begun to worry more.  

I think this is also the part that is the hardest to explain to people who are not familiar with Alzheimers or caring for a parent.   But one friend told me that this worry is not unfounded because of love.  

And Love is what I have really focused on.  Even with my mom, dealing with her ups and downs, love is what I am right now.  Love is what  I can do.  Today.  One day at a time.

Right...left...right...left...

Asking for what you want...

...is always easier said than done.  But I had a small victory this week by actually asking for what I want and need.  After really thinking through my decision about going to San Diego for Christmas, I came to realize that I needed to just simply call and discuss this with my brother one last time before I decided to purchase any tickets.  

Honestly, I didn't want to go for a TON of reasons, but more importantly that we have some major business details to take care of for my mom and really think that my time is better spent dealing with those things over my winter break than traveling.  It does feel selfish, but I'd rather spend that time taking care of some of these things and have the flexibility to do what I want.  It seems like most of the holidays I spend with my parents are more about their needs than mine.  I am learning to finally speak up and ask for what i want, but its hard.

I hope to talk to my mom soon and suggest that I come get her and bring her to my house for a few days.  In that time, I also hope to update her will and maybe even have Christmas with my cousins and Aunt.  We'll see.  

My brother and I ended up having a great conversation about some action steps that need to happen.  He committed to making a list of business contacts that we need to collect so that when I go down to see her in a week I can gather as much as I can and begin the process of gathering information for her.  I committed to emailing her financial advisor asking to meet with him to find out where she stands financially and also contacting my cousin and suggesting we do Christmas with mom and Aunt Shirley.    

So, we are postponing the trip until february and I am in the process of taking care of the following:

*Will:  updating
*Bills:  getting passwords/online information
*LTC:  updating contact information for both me and my brother
*Douglas Anderson:  set up meeting
*House:  clean out
*Evergreen Hospital: Gerantologist
*Medications:  current medication
*Medicare:  HOw much/when
*Church:  Westminister Chapel:  Pastor Gary/Ralph

Holidays

Holidays have really changed for me as an adult. As a child, I loved them! All the family getting together, eating yourself silly and hearing the sounds of the tv and adults chatting. But as we start down the path of the holiday season, I am reminded that now that I'm adult, holidays look very different. Because my parents are divorced, every since I was 15 I did each holiday twice...once with mom, once with dad and step-mom. Now that I've been doing that for almost 20 years, I'm kind of tired of it and have tried very hard not to split my holidays. My siblings are pretty spread out: Oldest brother in CA, 2nd oldest in OR, and me and my the 3rd oldest in WA. But to add more stress and chaos to this already very complicated holiday season....then there's what to do with mom.

I hadn't made up my mind about what I wanted to do about Christmas. And then my brother mentioned to my mom that I had been thinking about taking her for Christmas in San Diego with him and his family again. While you can never prevent conversations from happening, I was really hoping to buy a few weeks to really think about what I wanted my holidays to look like. My brother realized that he probably shouldn't have mentioned it to her and honestly felt bad. I reminded him that its okay, I just was hoping to have some more time to think this through. And we can't protect her from all conversations. They are going to happen.

Then mom calls me tonight, first leaves a message and then another call an hour later. And trying to explain to her that i hadn't thought about what I was going to do if I didn't go to San Diego was just as confusing as explaining to her that I hadn't looked at flights. She is definitely not able to understand rational conversations as well as she could...a year ago. She is apologetic for being so difficult to deal with...but the problem is that you can't even explain that I'm not mad at her and that it is difficult to explain that you haven't had a chance to do the research on airlines tickets. She doesn't get it...and never will.
I of course have flashbacks to last Christmas taking her to San Diego. Having her "chew me out" at security for reminding her that she didn't have to take her shoes off since she is "of age" wasn't pleasant, I"m a grown woman Ana!" I pretended to not know her at that moment and walk away while taking VERY deep breaths. Do I want to endure this again? I'm not sure. Not really. Or when we were on our way home and I was trying to be funny and asked her if she had packed her firearms etc. to which she responded, 'trying to be funny' and accused me of having no sense of humor. The most fascinating part of the trip was definitely when we were flying home and she told the guy next her, her entire story of losing her memory like they had been friends forever. No shame, no filter just living.

She volunteered to look into flights and asks me if she can go to a travel agent...i'm like, wow...I don't think so. (Do they even exist anymore?). The main frustration for me is that I can't help her from this distance. She doesn't want to be made to be stupid. She is VERY vocal about that...but it is so hard to know how to respond to her when she asks about why her computer isn't working. There is no graceful way to respond to her. None. She is going to be upset at this process and is going to be frustrated. But there is nothing I can do. Sometimes I'm relieved that I can't do anything. But it means nothing is getting done. So most of the time, I'm annoyed with this disease. She is a very capable person and is doesn't want to let this get her...her words. But how do they know if they don't really know when they are in their right mind? The ambiguity continues...

So for now, I am looking into flights and it looks like I'll be going to San Diego again this year...and ultimately it's probably the right thing to do because I know that my mom will likely not be able to make that trip much longer nor will I be able to manage her on the trip.

ambiguous grief

am·big·u·ous

amˈbigyo͞oəs/

adjective

1. (of language) open to more than one interpretation; having a double meaning.

   "the question is rather ambiguous"

   • unclear or inexact because a choice between alternatives has not been made.

     "this whole society is morally ambiguous"

     synonyms:

     equivocal, ambivalent, open to debate/argument, arguable, debatable;More

   
   

Six months after my mom's original diagnosis, I found myself really struggling for clarity about where I was in my life.  Earlier that year I had pursued individual counseling only to be turned down because the provider was not accepting new patients.  As it turns out, timing is everything in my life...I wish I could swallow this more easily when it comes to dealing with my mom.  About One year ago, I found a wonderful counselor, L.  L has been the sounding board that I've needed, the thought provoker and just the right amount at just the right time.  Her profile online suggested that her focus was on 'life transitions'.  And as it happened to be, I had been on a journey of transition for quite some time and I was just down right tired.  

This spring at one of my visits, L shared with me this term, "ambiguous grief" that she had heard at a conference.  It hit me like a ton of bricks and a weight had been lifted.  Finally a name for what I was going through.  It explained why I could go from extreme and total happy to a puddle of unexplainable emotion in less than 60 seconds.  And in a lot of ways it is parallels this ambiguous disease that has been rearing its ugly head.

At the time I started seeing L, I had recently moved, (for what felt like the gazillionth time), inherited a very difficult classroom of children, started at a new school and was one full year into a 4 year master's degree program in primary Montessori education.  So yeah, a lot going on.  Needless to say, I wasn't handling disappointments well and just trying to get.  Some of my friendships took the hit.  But some of my friendships grew deeper and more solid.  Never the less, i guess in some ways I found out who my true friends are and they are the ones who continue to support me and love me and more importantly listen to me.

As I reflect on a year passing and I've moved from the feeling of ambiguity flipping on a dime, to flipping in an evening.  Tonight I got a call from my mom and we had a rather pleasant conversation.  I'm not sure if it was the glass of wine I had almost finished when she called, or if I was just at a good spot at the time.  But its never easy when you realize how much your parent relies on you, even if you are not there.  I feel the role of parent/child reversing more quickly than anticipated.  And even as the tear runs down my face as I type, I fully expected it, but my heart never seems to ever really be prepared for hearing it.  Mom says to me tonight, "I know I'm hard."  Hard doesn't even begin to describe it.  But I simply say, "you're not hard" and in my mind I think, "You're actually softer mom...the softest you've ever been!"  And for that I am grateful.  You hear horror stories of people with alzheimers who are angry and lash out.  Thank the lord that hasn't happened yet.  I have seen her anger...at God, asking "is this my punishment?".  I sit back and ask myself, "for what?"  I've felt her frustration towards me but know that she is projecting...but it is not new.

I've heard the 30s referred to as the catch 30's...you're finding out who you really are and how you can weather the storms of life around you.  (I highly recommend this book:  

1. Passages

   Book by Gail Sheehy
2. 3.5/5-Google Books
3. Gail Sheehy’s classic bestseller, Passages: Predictable Crises of Adult Life, is available as an eBook for the first time, with a new introduction. ... Google Books
5. Published: January 1, 1976
6. Author: Gail Sheehy

Never in my wildest dreams did I imagine that the storm I was weathering would be that of my mother.  And that I would have to navigate my own sails through it.  

But I often find myself asking, when do I get to find safe harbor?  

Insert "Alzheimer's" where "Cancer" is....

http://www.huffingtonpost.com/alexandra-detwiler/caregiving-lessons_b_5689445.html?ir=GPS%20for%20the%20Soul&utm_campaign=081914&utm_medium=email&utm_source=Alert-gps-for-the-soul&utm_content=Title



This article is pretty much spot on when it describes what is like to be a YOUNG caregiver.  Yes...I'm 36.  I'm not married.  I don't have children of my own...yet.  And there are times when I do ask myself "WHY ME?  WHY AM I THE ONE TO BE THE CAREGIVER!" But they come and go.  And when I read this article, tears were streaming down my face because how bang on it is!

We're on the A team...and it doesn't include Mr. T

The A team I'm talking about is Alzheimers...and this is a team you get signed up for without your permission.  I'm pretty sure Mr. T would NOT be down with this, "I pity the fool!"

But seriously....As I've gotten older, I've realized many things continue to be 100% completely out of my control.  You are saying "Duh Davida"!.  So I came up with a list of things that I have absolutely no control over:

the weather: including the pollen count!

the gas line at Fred Meyer

that when I get my car washed it rains the next day

aging

my height

paying taxes (well I could but probably not a great idea)

...But I had no idea what that really meant until April 2013 when my mom was diagnosed with "Mild Cognitive Impairment with concerns for the early onset of Alzheimer's." And just like that, my world was turned (and continues to be) upside down, sideways, backwards and forwards--all at the same time.  

Recently  I was visiting my best friend from 1st grade and mentioned to her that I was thinking to dust off my old blog.  She completely agreed and this post is the result!  I need a way to communicate what really IS going on without having to say it over and over.  There are days when I want to talk about this ugly disease that is plaguing my mom's brain and robbing her of total enjoyment of her retired life.  But more often than not, there are more days that I don't really want to talk about it and don't really want to go into all the details because there usually are a few.  My hope for this blog is not only a safe place for me to share but also provide insight into what its like to be a caregiver for your parent when it feels like I still have my own life to live!!!

I welcome your comments and desire to share, but please be respectful of my privacy and not post this blog on facebook.   I hope you can at least take a moment and find out what it is like to be in my shoes on this journey.  Thanks for reading!