Saturday, April 26, 2014

Two little words...

I thought I was past the point of Mom's words being able to hurt me.  Through the last few years she's called me selfish, self-centered, a bitch, etc.  She has told strangers and family that I beat her with a chain across her back, I punch her, I trip her, I am kidnapping her and the ever popular accusation that I haven't fed her in 3 days.  She has accused me of stealing her purse, her clothes, her stuff, and the food out of her mouth.  She accuses me of lying about whatever it is she thinks that I should be doing at any point during any day.

I've heard it all.  Or I thought I had.  So, I don't know why her words today hurt me the way that they did.  She listed all of the things that she does for me every day.  Most of it was gibberish.  But at the end of the list of her wonderful deeds she looked up at me, looked into my eyes and said, "Why don't you ever say thank you?  I do everything for you and you can't even say a simple thank you." 

It was like a knife.  I couldn't get to Pandora and my earphones fast enough.  That was about a half an hour ago.  In between songs I can still hear her droning on at me.  Yes, I could say those two little words just to quiet her, but I won't.  

Thursday, April 24, 2014

I got mine already...

For several hours this evening, Mom bugged me to take her to the store. So, at about 7, I gave up and took her to Target. We were there for about a half an hour and she spent the entire time looking for “him”. Somehow, between home and the store, we acquired and misplaced a little boy. And, wow, Mom was ticked! She yelled for him. She looked for him. She yelled at me because I couldn't/wouldn't find him. She was angry at strangers for taking him. When I couldn't take it anymore, we got in line to pay for a couple of things.  And then... it got worse.

While standing in line, the little boy forgotten, I could see Mom eying a piece of gum that was smashed onto the floor. I knew she was dying to pick up that “dime”, so I stood on it. I thought I was being pretty sly. I got all of our things placed on the checkout thingy and motioned for Mom to go through. She got into my face and said, “I saw what you did! That was mine and you had no right.” She put her fist in my face and said, “Don't worry, I'll make sure that you get yours later!”

Don't worry, Mom. I think I have received more than my share. You go ahead and keep it for me.


And then there was one...

While I am still hurt and confused by my brother's actions, I am rather calm and resigned to the situation.  He is the one who is losing something.

I actually feel some peace today.  I don't understand why he has chosen to turn his back on me and our mother.   I will probably never know and I'm sure it will pop up now and again like a sore tooth for me to worry at.  But, for now, I choose to move on.

I once visited an eerily accurate psychic who told me that the line I have on my hand was what she called a "sucker line".

The line straight across the top of my palm is the the "sucker line".  Most people have 2 broken lines where I have 1 solid.  (I know you just looked at your hand.)
She said, "Honey, you have to find a back bone or you're going to be taken advantage of for the rest of your life."  Through the years, I have developed a back bone, but it isn't stiff and unforgiving.  It is able to bend... it bends right up to the point that it will break if I don't stand up straight and say, "Enough!".

As I walk away from my brother I do say,  "Enough."

I cannot lose something that I never really had.

Wednesday, April 23, 2014

The last time...

I am so frustrated today.  Unfortunately, it is for the same reason that I have been pulling my hair out for most of this journey.  As a lot of you know, I have two surviving brothers.  At different times, they have both stepped up and helped, either by watching Mom or by helping me financially.  I should add that the one that helped by watching Mom did so when it was convenient and only after requests and demands.  The financial help from the other has come more recently and more willingly. 

The brother who sometimes watched Mom, hasn't spoken to me in almost a year.  He did send my family Christmas presents and my daughters birthday presents.  But, there have been no calls asking how Mom is doing.  No texts checking to see if I'm still alive.  And it just gnaws at me.  Even on good days with Mom there is this underlying hurt because I don't honestly know why this is acceptable to him or why he feels that I deserve it.

I understand that both brothers hold a strong resentment to some things that happened to us as children.  I get that.  And neither know how to care for her.  They get frustrated.  It effects their health or mental well-being.  For one of them, it upsets his family.  The other has no patience with her.  But, I just have to know how many of those excuses do not apply to me and my family?  Am I exempt from the childhood resentment?  Do they think that I have a magic wand and barrels of patience?  Is  my health a guaranteed commodity?  

My youngest daughter will be graduating from the 8th grade at the end of May.  Today, she asked her uncles to watch Mom that night so that her celebration would be free of the everyday tension, anger, and embarrassment that has been so much a part of her young life.  During the request, my daughter found out that the "absent" brother not only got married in the last year, he became a grandfather for the first time.  If I was in doubt before, it is clear now, I am no longer a part of my brother's family.  And that will have to be okay.  I don't want to be part of something where I'm not welcome. 

But, here is my frustration.  I don't want him helping us.  At all.  I know it's my pride speaking, well, and a dash of hurt.  My brain is screaming, let him help.  It's for your daughter.  And because of her, I will let him help.  But, it will be the last time. 

Tuesday, April 22, 2014

Off of baseline...

Another day at Urgent Care down and in the books.  Mom woke up this morning with a pretty good sized bruise on her forehead.  So, off we went to UC to make sure that it wasn't anything serious.

It felt like we sat in that waiting room forever.  The wind was really whipping outside and it was upsetting to her.  At one point she spoke to the crowded room in a tone that demanded attention, "EVERYONE!  LOOK AT THAT!"  Most everyone glanced outside but only one person responded.  A rather rough looking young man looked outside, looked at her and said, "Wow!  Yeah, that's crazy!"  He smiled and went back to his wait.  He was the last person that I expected to be kind... and I'm again reminded not to judge my fellow man.  Mom spent hours trying to find someone to help her escape.  She would frantically wave, I would gently grab her arm and smile at her would be accomplices and say that it was okay, she really didn't need their help.  

She was called in for the nurses to take her vitals.  She didn't want the blood pressure cuff to be put on.  When I explained that they just wanted to take her blood pressure, she glared at the nurses and said, "They don't need to check that, I haven't had a man in a long time!"  Well, okay.  Good to know, Mom. 

Three and a half hours later we made it out of there with a warning that if her behavior becomes irregular that we should go to the ER immediately.  I wanted to shake my head in awe at the stupidity of that comment.  I wanted to laugh.  When I seriously asked how I could tell if her behavior is irregular, the doctor told me "Anything off of baseline."  Well, okay then.  So, if at some point during the night I realize that she is allowing us an extended period of uninterrupted sleep, I shall bundle her up and drive to the ER. And if she is especially nice we shall go to the ER and announce, "She's off her baseline, we need a doctor... STAT!"

Seriously though, I am grateful.  The doctor didn't see anything that concerned him.  More importantly, no boxes of medical gloves were harmed in the course of this visit.  

Saturday, April 19, 2014

Small steps...

I've been working on my anger.  I'm doing better but I still have a long way to go.

One of the things that I am trying to do is to observe Mom when she isn't trying for attention by being angry and negative.  Last night while I was lying on the couch in the dark I watched her stand in the dimly lit hallway.  She was mildly agitated, but not angry.  As she stood there, I could see the confusion and frustration.  She seemed to know that she was someplace familiar but knew it wasn't her home.  She was quiet, not bothering anyone (that would soon come) but clearly not comfortable.  It was after 11 and she had gone to bed several hours before.  She was up and down for almost a half an hour before she loudly said, "I need to go home.  NOW!"  I ended up spending almost 3 hours in her room, just sitting next to her bed, letting her know that I was there.  I have to be honest, it was more to let my daughters get some sleep than it was to calm Mom.  But, I wasn't angry. 

I am hoping that by focusing on her when she is calmer, I will see the human side of her suffering.  I need to focus on the disease and not her behavior.  I need to accept that she is the victim.  I need to stop blaming her and know that Alzheimer's is the villain. I need to feel her pain and remember that she did not choose this journey. 

I may be taking small steps, but they will still get me where I need to go. 

Tuesday, April 15, 2014

I am angry...

I have been thinking about yesterday's posts... a lot.  I know that I have a problem with the anger that I am feeling in this situation.  And I am very angry.  I believe that some of my anger is justified.  My family and I should not be in this alone.  I have siblings that should do more.  I am broke and scared that no one will want to hire me when this is all through and I won't be able to dig my way out of this mess.  I am angry at this disease.  It is evil.  It has devoured, or at least snacked on, every area of our lives.  I am angry that my children will remember me as a basket case... as someone whose moods jump from anger, to despondency, to silliness, in a blink of an eye.  At any given moment, the don't know who their mom will be.  And I am angry that my health has suffered from the stress.  I don't want to be a statistic is this journey.  I want to be here for my kids. 

 But, I think the worst anger that I feel is the one that isn't justified.  I am angry at my mother.  I know that anger is part of grief and we are certainly grieving.  But, normally, when there is anger during grief, it is aimed at someone who is no longer here and can't be hurt by the anger.  It is a phase of grief that we tend to work through and let go when we accept that the person who is gone, in most cases, did not choose to leave us.  But, Mom is still here.  And that in itself makes me angry.  Why is she still here?  Why is she made to suffer and live like this?  Why does she have to be the center of everything in our lives? There is no decision that is made that she isn't the primary concern.  We don't/can't even use the bathroom without considering whether she will need it or even wake up when she hears it being used.  Reality tells me that my anger should be reserved for the disease, but I am angry with her nonetheless. 

Before things became really bad here, one of my daughters was very snippy and rude to her grandmother.  It wasn't like her and it wasn't called for.  When I asked her about it, she cried and said, "I guess it's easier to be angry at her now then to hurt when she's gone."  And there it is.  I think that anger is an easy emotion.  It is so much easier to be angry than it is to feel the pain of loss. 

I will be working on the anger.  It helps to understand it. It helps to stop using it as an excuse or justification for poor actions.  I know I won't fully erase the anger, but I can choose how I handle it.  I cannot change Alzheimer's.  I can choose how I respond to its challenges.

“It is wise to direct your anger towards problems -- not people; to focus your energies on answers -- not excuses.”  -  William Arthur Ward


Monday, April 14, 2014

When the credits roll...

"When you objectify a person living with dementia you dehumanize them.  Once dehumanized the person becomes a villain." - Bob DeMarco

In my last blog entry I shared some quotes that spoke to me.  The quote above didn't just speak to me, it  screamed at me.  I actually considered not including it in the list of quotes because it also convicted me.  It's what I have done.  It's what I do.  Mom is no longer a victim of Alzheimer's, I've turned her into the villain in this drama. And that's a humbling admission. 

Sometimes I feel like I am living that old Bill Murray movie, Ground Hog Day.  He kept living the same day over and over again until he got it right.  Each day was a test and it was his choice whether he learned from the results.  Well, if my life is that movie then I have been failing the test every day for years.  What a boring, sad movie I'm living.  I have felt for a long while that this movie will not end until I can pass the test.

This disease has progressed very slowly for Mom, but so has my ability to give her what she needs.  I must stop the anger and focus on what is real... she is not a villain, she is the victim.  And victims deserve compassion and empathy. 

I have to decide whether I am the person that I think I am... the person who can make this right. It will be a long journey and I know that years of anger will not be undone overnight.  But, I vow that I will find a way to end this story with more dignity and kindness than I have shown for the majority of the movie.  And if I can get this right, then maybe, just maybe, I will find it easier to accept the title of hero when the credits roll.

Wise words...

As you can imagine, I spend a bit of time reading and learning about Alzheimer's Disease.  Sometimes it is to understand it better and sometimes to help me understand my reactions to it.  These are some quotes that helped with both or simply spoke to me with their truths.

 "I'm in awe of people out there who deal with Alzheimer's, because they have to deal with death 10 times over, year after year." - Marcia Wallace

"With Alzheimer's patients, you have to be very careful what you say when you're looking at them over their bed.  Because once in awhile they understand it." - Nancy Reagan

"Alzheimer's is literally killing us, and the only way to fight this 'crime' is through a groundswell of people who continue to raise their voices and funds to ensure it gets the attention it deserves."  - Tess Gerritsen

"Caring for an Alzheimer's patient is a situation that can utterly consume the lives and well-being of the people giving care, just as the disorder consumes its victims." - Leeza Gibbons

"When  someone living with Alzheimer's believes something to be true it is true - in Alzheimer's World." - Bob DeMarco

"Alzheimer's caregivers ride the world's biggest, fastest, scariest, emotional roller coaster every day."  Bob DeMarco

"When you objectify a person living with dementia you dehumanize them.  Once dehumanized the person becomes a villain." - Bob DeMarco

Thursday, April 10, 2014

It will have to do...

Well, we made it through another visit to urgent care.  It was not fun.  I can honestly say that they will remember us now.  Who could forget an adult patient who tells you to "shut the f up"?  Who could forget a patient who calls the doctor a "bitch"?.  Who could forget having to throw away 3 boxes of gloves that an adult patient threw all around the room? 

Yep, we made it through.  And that is the positive that I am able to see at this point.

Wednesday, April 9, 2014

The stye is the limit...

Things have been fairly normal around here lately.  Well, normal for us. It's been so quiet that I've been waiting for another shoe to drop... not the proverbial other shoe because that would mean that there were only two. 

Mom came home from day care yesterday with a little redness in her right eye.  I looked closer and it looked like she was getting a stye.  Sure enough, by this afternoon her eye was irritated and starting to swell.  It didn't seem to bother her until a couple of hours ago when she found the irritation.  With the discovery, the shoe dropped and Mom picked it up and threw it at me.  I won't go into a lot of detail, but, let's just say that keeping her hands clean and away from her eye is a battle. Each time she touches it she thinks is the first time.  She doesn't remember being told to leave it alone.  Trying to help her feels like a war.  A warm compress on the eye is met with screams of torture. We'll be heading to urgent care in a little bit.  Day care and the chance for a normal day will be cancelled tomorrow.  

In the grand scheme of things, this is a small shoe... but it packs a heck of a kick.  And I just want to cry. 

Sunday, April 6, 2014

Just a quick funny...

We have a pet who had surgery recently and is wearing a cone.  I have to keep her away from Mom because every time Mom sees her she tugs on it and tries to pull it off because "it belongs on the lamp!"