Never enough...

Mom is sobbing and screaming at me. She is convinced that I've locked my kids in their rooms.  Showing her the empty rooms doesn't work.  Telling her that they aren't here doesn't work.  She was furious with me for locking up her sons.  She finally transitioned into it being my daughters.  She is threatening to call the police because I am kidnapping them.  There are no words to calm her.  There is nothing but anger in this house.  She is accusing me of unthinkable things.  How do I answer her?  How do I calm her?  She is in the middle of her dose of medication to calm her.  I am sitting here with Pandora on my earphones.  But it is not enough.  Nothing is ever enough. 

Twice a child...

 "For the nursing of the old is like the nursing of children." - Antipho the orator [c. 430BC] 
 "The old man then, as seems, will be twice a child." -  Plato [c. 400BC]

I first heard this thought while catching up with an old friend.  As I explained that I was caring for my Alzheimer's mother, he shared this quote, "Once a man, twice a child."  That was about 3 years ago.  It was true then, but so much truer now.  Just as you watch your child's progress with pride and anticipation, I watch my mom's digression with pain and despair.  What was once a pleasurable and exciting transition in my kids' development, has turned to dismay and the fear of what comes next with Mom.

We cut up her food in small pieces and make sure that it won't burn her mouth.  We keep food on hand that she especially enjoys, some healthy and some not, just so that she eats something.  We trick, cajole, beg and sometimes threaten just to get her to bathe.  She goes to bed and gets up with the sun.  She rarely sleeps through the night.  She fights her medicines, some I'm able to crush and put in applesauce.  She cries if she isn't the center of attention.  She has no concept of actions and consequences.  She no longer understands that those around her have needs.  She can no longer dress herself.  She has temper tantrums and sees people no one else can see.  She fears the dark but screams at the light.  The smallest boo-boo may as well be a massive wound.  She is not happy unless she can see me, even if it means coming into the bathroom with me. Somehow, I accepted that one better from my toddlers... lol. 

I could continue with the list, but I think that you get the idea.  When I searched the origin of the quote from my friend, I was surprised at just how long man has been saying variations of the same thought.  So, what  we are experiencing is not new.  I had no plans to become my parents' parent.  Yet, here I am.  And I am sure that people will be doing the same thing long after my children have sung me my last lullaby and cut up my last meal.  And, just for the record, chocolate is always a good standby meal for me.

I am quiet and choose to listen...

During still another very early morning wake up, I was sitting in Mom's room listening to an easy listening rock station on Pandora with my noise reducing earphones - they are amazing by the way.  It was almost 2 o'clock and the sleeping pill still wasn't kicking in after 45 minutes.  Between songs I could hear Mom demanding to be let out of her room so that she could get dressed and go to school.  I find it fascinating that a woman with almost no short-term memory is able to harp on one consistent topic for so long.  I had tried several times to explain that it was the middle of the night, that it was dark, that there was no school, that people were sleeping, etc.  But, she continued on, occasionally taking a breath. 

As I was sitting there listening, and blocking the random escape attempts, I focused on the music as much as I could.  I mentally sang along with some songs, allowed my mind to drift during others.  I talked to God some, not so much a prayer as just a chat.  Overall, I was feeling calm, if a little frustrated that I wanted to be in bed.  

At this point, I had been sitting in that dark bedroom for about an hour and a half.  I wasn't asleep.  I wasn't even drowsy.  But, my mind must have drifted off because I tuned back in to tears sneaking down my cheeks.  A Brad Paisley song had come on my "rock" station.  The song was "When We All Get to Heaven".  By the end of the song I was crying in earnest.  When Brad finished, Carrie Underwood came on with "How Great Thou Art".  I was quietly sobbing at this point. The station returned to its regularly scheduled programming with "Like a Rock" by Bob Seeger.

What incredibly beautiful gifts I had just received. 

During this journey that I am on, I have experienced and shared times when my faith was being tested.  And times that I felt truly abandoned.  But, one of the greatest lessons that I have learned during this horrible trek is this... I am never alone.  The times when I feel alone are the times when I am not listening.  He is with me.  He loves me.  He wants me to get through this with Him.  And, if I am quiet and choose to listen, He has wonderful things to share with me. 

If you'd like to listen to my gifts:
When We All Get to Heaven    http://www.youtube.com/watch?v=ft4R93LTX3M
How Great Thou Art  http://www.youtube.com/watch?v=3X6IzGDoGwo

The love in my eyes...

I recently read a Facebook post that had the poster asking how other caretakers deal with the paranoia, aggression and violence that some patients have towards their caretakers and people in general.  I found some of the responses interesting.

One of the responders said that you should treat them like a toddler.  Just hold them and love them.  That was similar to the one who said that you should turn away, count to 10, turn around and let them see the love shining in your eyes.

But, my favorite was, "I really dont believe in pills.but sit her down and have a heart to heart with her. Sometimes elder people just need someone to listen to them or to blow of some steam with no questions asked." 
  
I am curious to find out if this is their reality.  Do these simplistic approaches actually work for them?  And, if they do, Hallelujah!!  It actually comforts me to think that not every family dealing with an Alzheimer's member is going through this Hell. 

But, beyond the fact that I find these responses interesting, I find them absurd.  When someone is looking at me with intentions to harm me, I am not foolhardy enough to hope they see the love in my eyes. I am in defense mode. And, she will not see love in my eyes because there is no love left for my Mom to see.  It died.  Frustration, exhaustion and anger killed the love a long time ago.  Yes, that is harsh.  But, it is honest.  I loved my mom, but she's been gone for many years.  I will continue to honor that love by caring for the person who usurped her body.

Dr. Awesome...

Mom had a follow-up appointment today with Dr. Awesome.  Yes, that is what I call her.  We got called in late and Mom was in full form.  She did NOT want to stay and "get out of my way" was said many times. The nurse commented that I must not get very much rest.  Everyone in the place was able to see a small glimpse into what she is like.  And I had the satisfaction of being able to assure the doctor that her behavior was with her anti-anxiety meds having been taken.

I had a list of questions that the doctor patiently answered.  No, I do not have to continue giving any preventative meds that could prolong Mom's life. The doctor went through her list of meds and one by one explained what the medicine does and what would happen if I stopped giving them to her. 

I also asked about prescribing anti-psychotic drugs and the correlation between their use and premature deaths.  The doctor is not against the use of them and plans to prescribe one as soon as she has the results of a brain MRI.

And, finally, I asked if the doctor feels that Mom is ready to be admitted to a nursing home.  Her answer was a definite yes.  She feels Mom would actually do better in a home.  Between the falling, the anger and Mom's escalating unsafe behavior in a car, she feels that Mom would be safer in a home.  I have asked her to begin the process. 

I appreciate that this doctor is in Mom's corner, but is still able to find ways to help me and my family.  And, I will continue to call her Dr. Awesome. 

I want to go home...

It's getting bad and I want to take my kids and go home. It's 1:30 in the morning and I just got Mom to sleep.  I almost don't want to go to sleep, knowing I'll be woken up in a few hours. We moved in here because Mom wasn't able to pay her bills, take her meds or eat right.  We never signed up for the anger, the nastiness, the sleepless nights or the never-ending turmoil. I am worn out from the negativity.  I am tired of trying to protect her from herself, only to have her accuse me of hitting her, starving her and never doing anything for her.  I know that she's sick. I know!  But, this is my mother.  She is supposed to protect me.  I don't want to be her parent.  I don't want to do this.  I want to go home. 

The right to die...

More thoughts on prolonging the life of Alzheimer's patients...

I have been reading several blogs and articles concerning whether anti-psychotic drugs are appropriate/necessary for Alzheimer's patients.  And I am pissed. 

First, I'd like to explain why anti-psychotic drugs are prescribed.  I am not a doctor, so, my explanation will be from my perspective.  On a daily basis, Mom can be delusional, violent, hallucinating, paranoid, angry, agitated or aggressive.  Very rarely is she calm.  She wakes agitated and delusional.  She cannot sleep through the night.  She wanders.  She tries to escape and "go home".  She can no longer ride in a car without trying to get out, moving or not.  Seldom can I calm her by talking or reasoning.  She passed the point of being able to use reason and logic several months ago.  She is unhappy.  She picks large areas of her skin until she bleeds.  She has no empathy, compassion or sympathy left.  She is self-centered, argumentative and combative.  All of these symptoms are normal and part of the disease.  But, they do not allow for a very calm or peaceful home life, for any of us.  Anti-psychotic drugs address some of these symptoms.  Depending on the patient, the drugs can calm them, make them easier to live with and reduce many of the symptoms. 

But, the medical society is stepping away from the use of these drugs in Alzheimer's and dementia patients.  Why?  Because they have been found to increase the chances of patients dying sooner.  Yep.  They might die if they use them.  Am I the crazy one?  My mother is dying.  Piece by piece.  And they are afraid that she will do it too soon?  When exactly is the appropriate time for her to die?  Maybe when her brain is no longer able to tell her body how to move. Or breathe.  Will it be more appropriate when she can no longer swallow and needs a tube shoved down her throat to receive nourishment?  Is that a more humane time to die? 

I am so angry and disgusted with this way of thinking.  We have become a nation that does not allow our people to die a natural death.  We are obsessed with keeping people alive, regardless of the cost, both financial and emotional.  Everyone has the right to die with dignity.  Strike that.  Everyone should have the right to die.  Period.

Let her get on with it...

I am going to ask something that has been on my mind for many years now.  Why do we, as a society, prolong the lives of people like my mom?  Why do the doctors continue to prescribe medications that will only extend her misery?  And she is miserable.  She has no dignity left.  No quality of life.  There is no hope of a cure, or even a promising treatment, in her lifetime.  Why do we drag this on? 

Many years ago, Mom made me promise to do nothing that extends her life when there is no hope.  But, here I am giving her medications for her thyroid, her blood pressure and her heart.  A heart attack at this point would be merciful.  And why is she on a low salt diet?  Really?  The woman is dying and you want her to watch what she eats?  Her previous doctor was irritated when I told him that her last colonoscopy was her last.  There will be no more mammograms.

I am not suggesting that all medications be removed.  Anything that allows her to live out her remaining days  comfortably and free of pain should, and will, be given. But, prolonging her life, just to watch her sink further and  further into her own mind, is cruel.  I'm not even going to discuss the financial drain that long term care places on families and society.  Or the emotional and physical burden that family members face in trying to care for someone with Alzheimer's Disease.  I am just talking about a compassionate and realistic approach to this disease. 

There is no hope.  She is dying and she should be allowed to get on with it.

I'm still laughing...

Pretty much every time we get in the car, Mom freaks out and tries to escape.  She's rides in the back with the "grandma" locks on the doors and a lock that prevents her from undoing her seat belt.  If we have to wait in the parked cart for any length of time she gets very angry.  We have no choice to leave her buckled because we would not be able to put the belt back on when it is time to leave.  Talking to her and trying to calm her is futile.  She is past the point of understanding reason.  So, we try to block out the rants and thrashing.  For the most part, we simply ignore the screams and threats. 

But, today it was different.  Not that there weren't rants.  Those we had in great supply.  There was even plenty of thrashing.  The highlight was when she pounded on the window and begged the young man in the next car to "save" her.  What was different was the determination to get out.  Her pleas got through my invisible force field when she said, "Someone hand me a nail file!".   I burst out laughing, turned around and saw this:

Let me leave you with this thought... this seat belt locks as it retracts.  Yes, I'm still laughing. 

Learn something new everyday...

I've always believed that we should learn something new everyday.  Today I learned that Mom loves wandering through Walmart EXCEPT when I need to be there.  I had added several items to the cart that I had to get and she started fussing. Loudly. As we walked out of the store, I also learned that I can be one of those people who just leaves a cart of groceries in the middle of the store.  By the time we got to the car she felt just fine and wanted to go for coffee.  I dislike being manipulated... but that was another day's lesson. 

The witching hour...

We still have not found the magic answer to get Mom to sleep through the night.  Between 3 and 4 am seems to be the "witching" hour.  Every night for the last week, she has woken up around that time and wanders, cries, yells, opens and shuts things, puts her face into sleeping faces, touches said faces to see if they are real, and generally decides we should all be up. 

So, this morning at about 3:30 my eyes popped open and refused to shut again.  I was just waiting for the quiet time to be shattered.  And I laid there.  Every leg that my daughters twitched and every step that a cat took was magnified.  As I tried to force myself to relax, another sound would explode in my ears. But Mom slept on. 

Finally, after almost an hour of waiting, exhaustion took over and I fell into a restless sleep.  And there it was.  The reprieve was over.  Mom was up and not happy that we weren't.  Although I know it is a disease, it is at times like these that I am forced to wonder if she does these things on purpose.  Even as I remind myself that it is not possible, I still have to say, "Well played, Mom. Well played."

I am not alone...

"God sends people into our lives just when we need them, to say the right word, His word, just when we need it" - W.A. Criswell

Last night Mom continued with the night wanderings and delusions.  She started wandering and crying at about 3 am.  I took her back to her room and tried to calm her enough to allow my girls to keep sleeping.  I was not successful at either task.  In all fairness to Mom, I cannot even imagine waking to a world that is unknown and forgotten.  It must be terrifying.  But the hours long litany of complaints and accusations took their toll on my sleep deprived mind. 

I found myself with tears on my face, fingers in my ears, quietly singing songs to drown out her voice. I started with the song that I always sang to my kids when they were scared "Jesus loves me this I know..."  As the tears turned to sobs, the songs turned to prayers.  I was begging forgiveness and for help for my troubled family.  I knew that, without help, we couldn't continue on with this task that has become a 24 hours a day responsibility.

I gave up.  I was not going to calm her.  I felt so alone. As I opened the door, there was the first answer to my pleas.  Both of my girls were waiting in the hallway offering support and to help deal with Mom. Kylie was able to get Mom to take a pill that quieted her.  I found out later that as I drifted off to an exhausted sleep, Kylie kept herself awake to make sure that Mom was going to remain quiet.  My girls are my rock.

Later in the morning, Mom and I were sitting and waiting for her name to be called into the Lab for a blood test.  As I sat there in this secluded hallway, I heard "Good morning, Nancy."  Mom's doctor had come looking for us.  She spoke to me yesterday on the phone and only knew that we would be there sometime this morning.  But, she took time out of her day and came looking for us.  She came over, looked me in the eye and said "You haven't been sleeping."  After I explained the situation, she wrote a different prescription for a sleeping pill and made some suggestions to help find what works for Mom.  And for my family.  A second answer to my prayers.  

Looking back on my life, I can identify moments when God sent people into my life at the exact moment that I needed them.  Some have stayed a lifetime and some came, taught me a lesson and left in a moment of time.  I believe that this doctor was sent to me as an answer to my prayers.  And her appearance in that hallway was His way of telling me that He heard me and that I am not alone.  Today has been a good day.

There will be no guilt...

I think that I am going to be writing a lot of blog posts.  I need this escape.  But, I don't want people feeling sorry for me.  I do not write this to get sympathy, offers of help or advice. I know that each and every one of you that take the time to read this would help us if you could.  I simply write to keep from going crazy. 

The past 2 nights Mom has been very agitated.  The medications just don't seem to be working.  When we finally get her to sleep it lasts for very brief periods of time.  This morning she was up by 4 am screaming that someone had taken her money and things. I was able to get her to lie back down with the promise of her bed being warm. She laid there crying and begging someone to help her.  It took me until 5:50 to calm her enough for me to leave the room.  As I stood to leave, she cheerfully said, "Good morning!". 

By 7:30, we were at Walmart just to allow my daughter a little time to get some sleep before she had to leave for work.  We wandered around  for about 2 hours.  She seemed to enjoy it. It was peaceful. She calmly pushed the cart as I looked at things that I don't need.

We went out again about 11.  She was calm for most of the trip.  But, we had to come home.  We can't live at Walmart.  Currently, she's throwing accusations at me... that I haven't fed her, I've stolen her money, I am selfish and won't do anything for her.  She's is trying to escape and go to work.  Apparently, she promised them that she'd be there early today.  And I am mean for not driving her and/or letting her walk.  I'm calm.  I'm listening to my music and counting the days until I can beg the doctor to institutionalize her. 

But the one thing I'm not doing is feeling guilty about that decision.  I have given more than I had to give. And Mom deserves better than all that I gave.  And my children have seen things that no child should have to see. There will be no guilt. 

The Impossible Dream...

I am sitting here listening to Pandora turned up so loud in my earphones that I am sure it is damaging my hearing.  Mom fought us for 3 hours last night about going to bed.  Two of us literally had been blockading her bed to keep her in it.  She was mean, combative and expected us to feel sorry for her.  But, to let her out meant that she would fall (which she did, twice).  But, we were the bad guys.  In her mind, we deserved every mean thing that she could say or do. I might have but my daughter did not.  It killed me to even have to ask her to help me. The sleeping pill that I gave Mom at 9 finally kicked in at midnight and she passed out from exhaustion.

Fast forward to 6 o'clock this morning when it all began again. Apparently, she had to be up to get ready for school.  I was able to keep her in bed, mostly, until the girls made their escapes at 7:20.  Breakfast was eaten and her first dose of anti-anxiety medicine of the morning was served.  It kicked in about 8.  As did her lack of sleep.  She took a few mini-naps.  Unfortunately, she woke up from the last one delusional and pissed at the world.  I tried everything I know to calm her.  Lunch, conversation, explanations, screaming.  You know, all the things that calm people.

So, here I am blaring music in my ears drowning out the constant banging of that damned hammer. Yep, I 'm listening to Gary Allen sing about how all storms run out of rain and all nights eventually turn to day.  Followed by Simon and Garfunkel singing about the sounds of silence. The only way that I see this song set ending is with The Impossible Dream.

"There's something wrong..."

So, we will soon be adding another thing to the items that can't be used around Mom. 

Let's review the list so far:

-The oven upsets her because it is hot and it will burn up the house.
-The wall heater is too hot and there is "something wrong".
-The dishwasher is scary because "it is burning up the dinner and there is a red light".  And, of course, we all know that a red light means we need to stop it.
-The air conditioner is too cold.  "They" told her not to use it.
-The washing machine makes a noise that she has never heard before.  Therefore, there is "something wrong with it", as well.
-The shower is broken because it makes the bathroom warm.
-The lights are too bright.
-The laptop is going to burst into fire because it has a blinking light on it.
-The timer on the oven is clicking off the time to our deaths.
-The stove has "grandma guards" on the knobs because she couldn't get the burners to work.

And today we add the clock on the microwave.  Apparently it is broken because the numbers keep changing.  She screamed from the kitchen, "OH NO! It said 3-2-3 and now it says 3-2-4!"  It took me until 3-3-0 to convince her that it is a clock.  

  

Phrase of the day...

As long-term caretakers of a long-term terminally ill family member, we have devised a few ways to cope with the pressure and frustrations of every day life.  Some work.  Some don't.  Most involve humor. 

Several years ago when Mom had lost most of her short-term memory, but was still able to share the long-term stories, we used a simple change-the-answer game.  Every night at dinner, and usually several times during dinner, she would ask us our favorite meal.  So, our game was to change the answer and think of something that had never been said before. 

Each and every night she would also share the story of her walking the fields of her grandparents farm where she "always had a salt shaker" in her pocket.  So, on the rare occasions that she didn't share the story, one of us would ask if she had ever been to a farm.  She appreciated the interest, we enjoyed a fun way to relieve the stress of the situation.

It's been a while since we have been able to do anything as silly and harmless.  There is so much more anger and frustration in this house now.  Very little relieves the stress.  We are bombarded with the same questions over and over. Often, the question is asked again before we have had time to answer the question. More often, we receive angry responses if we give the "wrong" answer.  So, we have decided that tomorrow we will play a game.  We are going to keep a list of Mom's favorite things to say.  Then we will each choose one of the phrases and "bet" that it will be the phrase of the day.  

Here are some of her favorite questions/phrases:
Are you hungry/I haven't eaten in 3 days/I'm hungry
Are you going out/Are you going any where/Can I go with you when you go
Where's that boy/Where did that man go/Where are the kids
Does my family know where I am/Can I go home/Do you know who I am
Do you know that you just got me fired/You just cost me my job
I'm scared
Can I help you
Don't you think it's time to get up/You've slept enough/Get up/I'm hungry

I am aware that to anyone who has never been a caretaker (and possibly to some who have), this may sound callous. It might be .I do know that the words written above are painfully, unbearably sad.  But, I hope I am teaching my children alternative ways to cope with an unimaginably frustrating situation.  Is it at my Mom's expense?  No, I don't think so.  If you feel differently, please leave a comment.  I welcome other opinions.  I also welcome you to choose any one of the phrases above and repeat it over and over to your family.  And I do not mean for a couple of minutes.  I mean dozens of times. All day.  And don't wait for an answer.  Just ask it again.  And again.  Oh, and it's especially appreciated when others are busy or on the phone.  Try it.  And tell me if I'm callous.