Don't judge...

Mom's hair has been, well, a little crazy.  Taking her to a salon is out of the question.  The last time I got her to go, she sat in the chair and shook with fury.  Her fists were clenched and she cussed at the poor lady the entire time.  The stylist was genuinely scared.  I'm sure my laughter when Mom called me a bitch from across the salon, did not calm her.  Well, that was over a year ago.  Mom's attitude hasn't exactly gotten better in that time.  So, I took the matter into my own hands tonight.  Here is the "after":

Before you tell me that I did a horrible job (and I did) take a peek at the "before":

Ok, just kidding.  Or am I?  Here is a good hair day for Mom:

 

 I did what I had to do.  Don't judge.

Backwards milestones...

You all know that I compare the journey of this disease to the progress that a young child makes each and every day.  But, because of the cruelty of Alzheimer's, we take note of the regression instead.  Or what I call backwards milestones. 

 I asked Mom to please put her shoes on.  And this is what she did:

=

This is one of those things that makes me want to laugh at the absurdity of the picture and cry at the cruelty of the disease.   I did both.

Later, we took Mom out for her favorite McDonald's cheeseburger.  As my daughter was starting to get out to help her grandmother from the backseat, Mom whined in her 3 year old sing song voice, "Mom? Why does SHE get to get out and I don't?"  I wanted to respond with, "Honey, because she knows that her wallet is not a shoe."

I just complain...

I'm feeling rather alone these days.  And helpless.  I had the opportunity to relieve some of this stress by placing Mom into a home.  But, I didn't do it.  So, now I feel like I have no right to be frustrated.  Sort of like that friend who has never ending complaints about what a horrible boyfriend she has.  You try to help by listening and offering a shoulder.  But, there is only so much you can listen to because she never does anything about it.  She just complains.  That's me.  I just complain.  And feel so alone. 

Step right up...

Oh, my goodness!  Give me strength.  You know those carnival games that when you throw the ball at them, they pop back up and pretend they were never down?  Yeah, that was Mom last night. 

We had her "knocked" down so many times.  And just when I would fall back to sleep "BOING"!  She's was up.  Back I go, into her room, onto the chair, Pandora in my ears and ebook in hand.  As soon as I heard her heavy breathing (ladies do not snore, HA!) I tiptoed out of her room and fall back into bed.  She was finally down for the count at about 2 am.  The barkers closed up shop and I got to take the big prize of uninterrupted sleep home with me. 

Life, being what it is, started back up at 6.  I have spent my time since then, keeping Mom awake.  She, of course, doesn't remember being up most of the night and wants to sleep.  She desperately wants to sleep. But, you parents know this dilemma, do I let her sleep and get some quiet moments for myself or do I give in and let her rest?  And the answer to that is, "How badly do I want to sleep tonight?" 

So, here I am trying to agitate my mother into staying awake.  I am listening to the unending litany of complaints that I brought on myself.  And, all I can do for consolation is promise myself that tonight I will be using a bigger ball.

Happy Mother's Day, Mom...

Mom has no idea that today is Mother's Day.  It is just another day that means nothing in Alzheimer's world.  With that, comes the realization that I cannot even verbally wish my mother a special day.  Anything out of the ordinary does nothing but upset her.  She no longer sees the beauty in a flower.  She can no longer appreciate the meaning of kind words meant just for her.  It is easy to forget that this frail person was once my mother.  Easy, because she is not the person who raised me.  Most of the time I don't even call her Mom, because in her words "I can't be your mother.  You're too old and I'm better looking than you."

So, I will honor her by remembering the mother that she was to me: 

-Mom quit work so that she could be a nanny to my children.  I will remember telling her that at 35, I was single and pregnant.  She said, "Thank God.  I was afraid you would never know the joy of being a mother."
  
 -She taught me not to accept bigotry and intolerance.  "God doesn't see skin color."

-I remember her teaching me to cook by just tossing ingredients in until it "looks right" (ok, that one isn't a great example, lol). 

-She also taught me manners, "If someone takes the time to say thank you, then you have the time to say you're welcome."

 -I will remember learning to appreciate the simple things.  She used to load us up in the car, stop and buy a pound of bologna, a loaf of bread and a six pack of soda.  She would drive us up into the hills to a creek where she would drop the sodas into the water to get cold.  And we would have picnic and a special day of fun.  Or she would buy a lug of tomatoes and let us eat them to our hearts' content.  We thought we were the luckiest kids in the world.

-She taught me to look at life from another person's perspective.  When I was 16, we were talking about organ donations.  After a lifetime of eye surgeries and four-eyes jokes,  I commented that I would donate everything but my eyes because not even a scientist would want them.  She replied rather firmly, "A blind person would be grateful for your sight."  I never felt sorry for the blessings of my eyes again. 


But, most importantly, my mother taught me that loving my children is the most important thing that I will ever do. Happy Mother's Day, Mom.

An evening at home...

Well, Mom decided to go to bed at 5 o'clock this evening.  She might have made if she hadn't felt the need to come tell us that she was going to bed 15-20 times each hour.  She had to explain what she was going to do and why.  Each time she came out, she had a clever and original variation that we hadn't heard... since the last time.  All of the usual suspects were present:  anger, frustration, confusion, delusion, self-pity, drama and fear.  She would demand that we go speak to the people in her room and then become angry when they left before we got there.  She forgot where her room was in the time it took her to walk the 8 feet from her door to the living room. Her pains ranged from her feet, to her chest, to her stomach and back to her feet. (I worry about the pains when she complains of the same thing twice in a row.)  She was scared.  She was cold.  She was worried that she hadn't seen her mother.  She was angry that I hadn't seen mine.  She was upset when the wallet drove down the street with a red light on top.  (That might bother me, too.)  There was a horse on the front porch.  Someone took her clothes, they were stolen and she had nothing left.

I could go on.  And on.  I am not trying to make light of her situation.  I know she is sick and I cannot imagine the terror of believing everything that she sees and says.  But, having given her a pill when I saw this beginning, it was extremely frustrating to have to watch for several hours just to realize that medicine never even touched her condition.  I had to wait and, in turn, put us all through a frustrating evening and was finally able to give her something to make her sleep at 9.  That took another hour before her body gave in to the drug.  So, if you are keeping count?  That was 5 hours of non-stop terror for her and mind boggling frustration for us. 

This disease is nothing more than a cowardly thief.  It has no compassion and no remorse.  Its true evilness lies in the fact that it abuses and bullies its victims for years on end with no respite. 

Caretaker fears...

I follow a page on Facebook called In Care of Dad.  It is a support page for caretakers.  Today they asked, "What is your greatest fear when it comes to caregiving?"  Their answers did not surprise me, but they did break my heart.  While it can be comforting to know you are not alone, it can be painful to know others are also hurting. 

Some feared that they would lose their patience and become cruel to their family members. Being "on" 24/7 takes a toll on anyone.  But, being on call to a job that requires you to be a babysitter and nurse to someone who can be delusional, paranoid, angry, violent or just demanding would take its toll on anyone.  
 
Others, who had quit jobs to become caretakers, were worried about financial matters.  Many caretakers receive no compensation.  The bills are paid by the pensions and savings of the family member.  The little financial security that they have, ends the day their family member dies.  Additionally, most caretakers are older.  There is no promise of a job when their service is through. How does a person in their 50s and 60s hope to find a job in this economy?  And with their own resources depleted, who will take care of them when they are in need?

Many were upset that the life they had, had moved on without them.  The invitations that do arrive are turned down because of the stress and apprehension of taking your loved one to a social function.  Eventually, invitations dwindle.  Friends move on.  And you are alone.

Some were fearful about their own health.  Not having a "real" job has left them with no health insurance and no time to focus on their own well-being.  The stress of living in this situation can cause health problems.  According to Stanford University, "Researchers have discovered that Alzheimer's caregivers have a 63 percent higher mortality rate than non-caregivers. In fact, 40 percent of Alzheimer's caregivers die from stress-related disorders before the patient dies."  That's something to fear. 

Some feel they are seeing their own future. Others feel they are neglecting their own families, marriages, and children.  I could go on.

This is a hideous disease full of scary complications.  Please, remember that if all of the caretakers of just Alzheimer's were the only residents of a state, it would be the 5th largest state in the US.  That is a lot of people and a lot of fears. 
 
http://med.stanford.edu/news_releases/2002/may/caregiver.html 
http://www.alz.org/alzheimers_disease_facts_and_figures.asp

FAFLL...

Very early this morning, I woke to the sound of  "Please, help me!"  I go running into Mom's room and find her on all fours, on the floor, at the foot of her bed.  I tried to help her up but was met with screams of "Don't!"  Fearing that she was severely hurt I ran back for my glasses so that I could see what I needed to do.  When I came back, I noticed a brief case, upright, at Mom's side. 

As I tried to move the briefcase, Mom again screamed at me to stop.  Somehow, her thumb had become wedged in the unlatched side of the case.  I released her thumb and tried to move the case out of the way so that I could help her up.  She shrieked as if she were in great pain.  I then realized (I am giggling as I write this) that about 2 inches of her right butt cheek were pinched in the opening, as well.  I did have enough compassion to not laugh at that point.  I know it had to hurt because I had to pry the case apart to get her cheek out (Ok, I'm evil. That sentence made me giggle again.)

It was one of those situations that I call a FAFLL... File Away For Laughing Later.  And that's what I'm doing this morning.

I pray...

As I sit here writing this, I am thinking about the frustrating evening that I had with Mom.  Nothing earth shattering or extremely stressful, just frustrating. I am also thinking about the fact that for the last week I have been struggling to find a way to remove my mother from my daily life.  I love her but I don't want to do this anymore. 

But, I am also thinking about the people in my life who are dealing with their own challenges.  I am touched by my extended family, who spent yesterday honoring their amazing mother, who passed 2 years ago. I am praying for my friend, whose mother's health is fragile and is facing a future of doctors and waiting lists.  My heart is breaking for the friend whose family is grieving the unexpected and tragic death of their mother, who passed over the weekend.  I am remembering all of the many people who lost a mother recently, or years ago, but miss her each and every day.

This frustrating and painful journey that I am taking with my mother does not lessen the compassion that I feel for your losses and worries.  I see the irony of trying to remove my mom from my life, while others grieve the loss of a mother from theirs.  I pray that we all find strength to handle our struggles and comfort during our time of grief.