Friday, June 29, 2012

I like that...

Recently, I have shared a lot of intense feelings.  So, this time, I'm going to lighten things up a bit.  Here are some positive things about caring for my Alzheimer's mom.

I like that...
-re-gifting doesn't offend her. Each and every time she receives something is the first time.
-every gift is the "best thing that I have ever gotten."
-she no longer cares what anyone thinks.
-she thinks that I need help with my "duties" in the bathroom. No, that one pisses me off. Oh, look a pun.
-she has become invisible. We don't see her lurking in the hallway peeking around the corner at us.
-I don't have to buy newspapers. The one we have lasts us a long time.
-she finds joy in simple things, like a piece of lint.
-she tucks her butt when she thinks she's in the way.
-she thinks that she's a vacuum. She can pick up things off of the carpet for hours.
-she hits on my oldest brother.  Yes, I know that one is wrong, but I get a perverse pleasure from it.
-everyday is Sunday to her. Except Sunday, then it is Tuesday.
-we can still find humor in this situation.

Wednesday, June 27, 2012

Just a moment in time...

I have decided to stop posting a link on Facebook to this blog.  I am finding that people are having various feelings that I don't want to be responsible for... feeling sorry for me, worrying about me, wanting to help and not knowing how, wanting to fix things for me, etc.  I love everyone of you for those feelings and I understand them.  But, they are not necessary.  I am ok.

Each time someone reads my blog, or anyone's blog for that matter, they are reading emotions and observations that are often from a moment in time.  In my case, those feelings are extreme, yet, also fleeting.  As soon as I am able to put words to paper (blog) the healing begins.  By the time you read my words I am okay. I have dealt with it and moved on.  Please, just know that I am strong and can do this... even if my words at the time say otherwise.  I love you all.

p.s. If you choose to come back without the convenience of a link, I welcome you and remind you that it is just a moment in time.


It's been a really bad night. I just can't do this anymore. At midnight I had my keys in my hand, I made it to the front porch, I can see my escape. But, as much as my soul must go, I cannot leave.  If I leave who will take my place?  My girls. The very people who are my life.  The girls for whom I would lay down my life. The ones who just looked at me with such disappointment that I am crushed to the heart of my being. 

So, I sit by the person who used to be my mother.  And I listen to words that are too vile to repeat.  I sit in the dark writing this blog in my mind.  I count the moments until I can leave this room and make it real.  These words that I write truly are my sanity.  I write them for me.  I write them so that I can make sense of a disease that has none.  I write them because it is the only escape that I am allowed to make.  I just wish I could find the words to make my daughters believe that I am invincible again.

Saturday, June 23, 2012

Rabbit ears...

This journey, that is Alzheimer's, can be fascinating. During the times in which I am able to step back and look at it objectively, I am amazed at the randomness of the disease. How does it pick and choose the details of my mother's personality and memory that it allows to show through? And, how does it decide when it will allow it?

My mom has always had a dry, sarcastic wit (a surprising trait in this family, right?). The other day when we got to my brother's for "his turn" Mom asked to use the bathroom.
Brother: Sure. It's where it always is.
Mom: *snottily* I wasn't sure if I was allowed to use it.
Brother: I think everyone who is full of sh** should use it.
Mom: Then why aren't you in there?

A clear thought process and wit.  Why is that allowed through but she can't see that her clothes are dirty or inappropriate?  How does she always remember where her bedroom is but doesn't remember that she lives here? Why does it allow her to forget who I am but know that she loves me?

I imagine her brain as that antenna we used to have on top of the television back in the day. You remember those. You had to twist and turn those rabbit ears to get your favorite show to come into focus. Maybe if Mom stands just right, turns around and hops on one foot while holding a piece of tinfoil this will all go away. Probably not, but, now that I think about it, that routine only worked until what you really wanted to see came back on the screen.

Monday, June 18, 2012

No hard feelings...

I try very hard to present a positive attitude to the world.  I figure nobody wants to hang around or read about a Downer Debbie. Yes, I have shared my feelings about the disease but when I talk about caring for my mom I often talk about the funny things that she does or says. Hearing about the horrible things that happen upsets my family. So, I stick to the silly things, after all, they make funny status updates. Yes, that was sarcasm.

But, the majority of the time it isn't funny. It is the worst thing that I have ever undertaken. When I choose to do something, I want to do it well. So, it is humbling to fail at something so important. And, I am failing. Miserably.

How do I deal with the quicksilver mood swings? She can go from raising a fist to me in violent anger to rubbing my cheek because she loves me in a fraction of a second. She forgets and moves on just that quickly. I can't. I am still in the defensive mode. I am not ready to have my cheek rubbed. And when I don't respond positively to the cheek rubbing, she is hurt and doesn't understand the rejection. I know she is sick but I cannot stop the feelings I have on a dime. 

So, part of the answer is that I am going to let it all hang out... good, bad, silly and outrageous.  This blog has officially become my outlet.  So, fair warning, if my words are not light enough, or fun enough to keep you reading... no hard feelings. I have enough of those already.

Thursday, June 14, 2012

A note for me...

I wrote this about a year ago and it is even more true for me today...

This has been on my mind for awhile. If I ramble, please, forgive me.
I am just so frustrated and I have to say these things or I might
burst at the seams. I am writing this for me and if I post it please
know I am okay.

Taking care of someone you love who is long-term, terminally ill
is one of the hardest jobs you will ever undertake. You are on duty
24 hours a day. 7 days a week. Your other responsibilities don't
disappear... you are still a parent,employee, friend, spouse,
bill payer, etc.

If you are lucky you have people in your life who "get it". Bosses
who tell you, "It's ok. Do what you need to do." Friends who aren't
offended that they are always the one making the effort to maintain
your friendship. Co-workers who cover for you at a moments
notice. Family members who genuinely try to help...and others who
would if they could. But many people who know you don't know that
you are a caretaker. Many who do know, have little concept of what
your life is like. Invitations cannot be accepted. Or advanced. Simple
things like your child inviting a friend over after school can no
longer occur. Eventually, the invitations stop coming.  And you feel
guilt. You are not doing enough foreveryone else... THEIR lives
are being impacted because of a choice that YOU made. You have to
fit your life into the small and rare occasions when someone else
can be there for your loved one. If your immediate family is part
of the care then you juggle who gets to "go out", knowing that
"going out" means going to the grocery store. You cannot just stop
and take your kids to something as simple as the movies. And
 eventually true family time is non-existent. You end up resenting
the person you love. Yes, that is part of it all. You're ashamed of the
resentment. But it is there.

And there are the people who don't "get it". They are the people
who judge.. they've taken care of a family member and it wasn't that
difficult. I read that 50% of caretakers of a terminal family member
die BEFORE their loved one from complications of stress. Well
meaning people will tell you "Don't forget to take time for you." And,
you know they mean it. And, they are right. But, taking time for you
means time taken away from someone else.

And my favorite thing that people have said to me, "Well, at least you
still have your mom. I would give anything to have mine back." I am
so sorry for their loss. Truly I am. But, you know what? I would like
to have my mom back too because I guarantee you that the person I
am taking care of is NOT my mother. She is a stranger in my
mother's body. I miss my Mom, too!

Friday, June 8, 2012

I am tired...

I am tired.  
Of letting down the very people who count on me. 
Of always saying the wrong things. 
Of losing my temper.
Of failing the test.

I am tired.
Of getting up everyday with the best of intentions and never achieving even half of them. 
Of forgetting that this is a disease and that she has no choice. 
Of allowing past actions to taint today's responses. 

I am tired.
Of teaching my daughters this example of compassion. 
Of disappointing myself.

 I am tired.

Friday, June 1, 2012

Is it my turn...

I mentioned before that one of my brothers gives me a break most weeks and takes care of my mom for a few hours. And I am grateful for the time.  Every Tuesday afternoon he takes her to her favorite coffee shop.  I take her several mornings a week for breakfast.  One day last week I took Mom in later in the day than I usually do.  I had to laugh when the waitress, whom I have never met, asked me if it was my "turn" to watch my mom.  HaHa. My brother has her for 7 hours and I have her for 161, so, yes ma'am,  I guess you could say that it was my turn.