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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Behaviors

What a difference a few days can make…

26 Sunday Aug 2012

Posted by Ann Napoletan in Behaviors, fear, Mom, Uncategorized

≈ 2 Comments

When I was at Eason House after work on Thursday, Mom was quiet but very, very sweet. She told me that my shiny necklace was pretty, gave me a big hug, and laid her head on my shoulder as we sat together on the sofa. She dozed off repeatedly, but never for more than a few minutes at a time.

The last time she woke up, she surprised me by wanting to go back to her bedroom. Most nights, she falls asleep in the living room, so this was interesting. I helped her out of her robe, and she laid right down in bed. As I stood there rubbing her back until she fell asleep, I momentarily flashed back to standing over the crib, rubbing Jess’ back until she would fall asleep… Back then, I certainly couldn’t have imagined that this is where we would be 26 years later. Life is funny that way, isn’t it?

Fast forward to today. When I arrived, Mom and Rene were just heading back into the house after sitting on the porch for awhile. The heat was a bit much, and the woman who was so sweet and loving a few days ago looked thoroughly p*ssed off at the world. Somewhere between getting out of the car and stepping into the house, I realized that it was not a particularly good day. She was edgy to say the least.

She has a very disturbing habit of smacking her head with both hands, in what appears to be a fit of frustration. It’s one of the things I hate the most, because she just looks so lost and so sad. When she does this, I often wonder if she’s having a moment of clarity and realizing that something is wrong with her brain. The doc says that’s not possible, but I don’t buy it – science doesn’t get it right 100% of the time.

Anyway, today, she was doing it so much that I thought perhaps she had a headache. Unfortunately, we’ll never know why she does it or what’s going on in that mind of hers, but whatever it is, it has to be awful for her.

One thing was certain; I couldn’t do anything to make her happy. Even as we cuddled on the sofa, she was extremely restless and was soon up and pacing. Dinner didn’t do much for her either. In fact, at one point, I thought I was going to be wearing both her her drink and a handful of baked beans… I finally gave up trying to get her to eat. She was very tired, and just wasn’t having any of it.

As I looked around the table, taking everything in, one thought washed over me with the strength of Niagara Falls. At that moment, all I could think was, “Please, God, don’t let this happen to me…”

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Not such a great day…

06 Monday Aug 2012

Posted by Ann Napoletan in Behaviors, Mom

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Stopped at Eason House after work. Mom was asleep, but woke up when I sat down next to her. Apparently she had been up since 3am and wouldn’t sit still all day… she’d no more sit down and she’d be back up again pacing…

We sat for awhile, her eyes fixated on the ceiling, not really responding to me at all. She’d slept through dinner, so we warmed up her food and tried to get her to eat. One bite, and that was it. Lots of yelling and hitting her head; agitated by the sound of our voices. At times like that, we’ve found it’s best to just leave her alone.

Hopefully, she ate something before bed, and will get a full night of sleep tonight…

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What goes up… must come down…

29 Tuesday May 2012

Posted by Ann Napoletan in Behaviors, Eason House, Mom, Ruminations

≈ 4 Comments

…or so they say.  For the most part, Mom has been doing well for the past few months.  Better moods, less agitated, fewer episodes and outbursts. However, it seems that she’s been on a steady decline for the past couple of weeks. Lots of yelling.  Hitting, kicking, and pinching the caregivers.  Very unpleasant.  (Have I mentioned that those girls are saints??  The abuse they take, the messes they clean up, and the love that they STILL give despite it all…)

I was hopeful that we’d have a nice visit today, but when I walked in and saw Mom’s expressionless face, I knew immediately she was not good.  And, she got worse.

I’d made a chocolate cake, and even though it was almost lunchtime, I sliced her a piece and topped it with a scoop of vanilla ice cream.  The magic of chocolate – it never fails, right?  WRONG.  I fed her a bite and she made a horrible face; you’d have thought I’d given her a spoonful of green peas!!  It was that bad.  And remember, this woman never turns down sweets.  I waited a bit, and eventually she took a few small bites.  Ah, I thought things might be turning around.  She was actually smiling, though clearly still teetering precariously on the edge of doom…

CAUTION: Downward spiral ahead.

About 15 minutes into our visit, she had an accident, so one of the girls took her back to give her a shower and dress her in fresh clothes.  To say she hit the roof would be quite an understatement.  I can truthfully say that in all of my 46.5 years, I have never heard such blood curdling screams emanate from her.  No two ways about it, she was pissed. She screamed continuously for twenty minutes.  It.was.awful.

Poor Susie came out of the bathroom looking like she’d just done 12 hours of physical labor – I honestly don’t know how those girls do it.  I really don’t. But, thank God, they do it.  Day after day after day.

After the traumatic shower, I was finally able to get Mom to sit with me on the couch where she put her head on my shoulder and fell asleep.  She had to have absolutely worn herself out.  Although she didn’t sleep long, she woke in a slightly better mood.  She seemed calm and was very, very affectionate, kissing me and stroking my arm and face.  At one point, she looked at me and said, “I love you.”  You would have never known it was the same woman who just an hour earlier was screaming loud enough to wake the dead.

After awhile, she became increasingly restless so we went out and sat on the back porch, then the front porch, then we came in and she gobbled up her lunch like a champ.  I thought she might fall asleep again, but a nap was obviously not in her plan.  When I left, she was edgy but I was hopeful that the worst was over.

When I texted the girls earlier this evening, they said she’d had another outburst and they finally gave her a lorazepam to calm her down.  That is always the last resort, once they have tried everything to redirect her, settle her, and quiet her.  Sometimes, that’s the only thing that will bring her peace. Those episodes are absolutely positively the most heartbreaking… what in the world must be going on inside her head? I can’t imagine how awful it must be for her, and there isn’t a single thing that anyone can do to make it better. Nothing.

One of the most frustrating things about the disease is its unpredictability.  It’s not even that you don’t know what you’ll have from day to day, but rather from minute to minute.  They turn on a dime, and you just feel so dreadfully helpless.  The hatred in their eyes is so real; their desperation, haunting.  And then they smile, and say, “I love you.”

I’ll never forget the person who said to me, “What’s the big deal, lots of people have parents who are getting senile.” Those words demonstrated a level of ignorance beyond my comprehension. The person was close to me and had spent time with my mother, so this comment was particularly cutting. Unfortunately, many people do still believe that Alzheimer’s is merely forgetting where you put your shoes or what day of the week it is.

By telling our story – the good, the bad, and even the ugly – I hope to help educate those people.  Alzheimer’s isn’t senility.  It isn’t forgetfulness.  It isn’t a normal part of aging. It is a debilitating, heartbreaking illness that robs us of our loved ones bit by bit by bit…  Remember when you were a child and your mother would yank the bandaid off quickly to avoid prolonging the pain? With Alzheimer’s, there is no such thing as “yanking the bandaid off quickly.” The only option is to sit back and helplessly watch the slow, devastating deterioration that takes place year after agonizing year.

More than anything, you just want them to be at peace and whole again…

___

Postscript:  Dr Freidenberg is in the process of adjusting meds in hopes of getting her back to where she was.  Until then, we’ll wait, watch, love, and pray…

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