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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Author Archives: Ann Napoletan

The beat goes on…

07 Thursday Jun 2012

Posted by Ann Napoletan in Falls, Mom, Pharma

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Received a call at work today that Mom had taken a fall. She had been pacing for awhile; one of the caregivers turned to answer the phone and when she turned back around, Mom was flat on the floor, face down.

They got her up, checked range of motion, et cetera, and thankfully she is fine.  By the time they called, she was lying on the sofa – quiet, comfortable, and resting.

The struggle continues with getting the meds adjusted properly.  For a couple of days, she was just very quiet and almost unresponsive, then by Tuesday, she was moody again. The screaming and lashing out continues, though apparently not as bad as it was for a few days last week.   This morning, they did have to give her a lorazepam to calm her.  I hope we can get back to a place where that is not necessary.

Eason House faxes a report to the neurologist each Thursday night, so I’ll call his office Monday, and we’ll see what he has in mind as a next step.  Not sure if she’s getting too much or not enough depakote now, but the thought is that the dosage is still not correct.  Getting this drug properly regulated is rather worrisome since it can cause issues with the liver.  I want to make sure they are keeping an eye on this as well.

We’re headed to Butler this weekend for my dad’s birthday, but will be back early enough Sunday that I can spend a couple of hours with her.  In the meantime, keeping my fingers crossed that the next several days are uneventful.

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dichotomous disease…

03 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma

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So the ups and downs continue for mom…

She was mostly “out of it” today – more or less unresponsive. Suspected culprits: the med change or perhaps a UTI. They will do labs tomorrow. I’d prefer the latter since it can be resolved with antibiotics… the other issue is a bit more difficult. Unfortunately, I’m betting it’s the former.  Any little change in those damn meds can create such an upheaval, and sadly, it often takes some trial and error to get it right.

I fed her about half of her dinner, spaghetti and meatballs, but she wasn’t terribly interested in it.  She did manage to eat her cake for dessert though. (((Smile)))

Afterward, we went over and sat on the sofa so that she would be more comfortable. She kept dozing off with her head on my shoulder, but each time she would wake up, she’d look at me with the sweetest smile – each time, just realizing for the first time that I was there – and say softly, “I love you.” Then, she’d close her eyes, lay her head on my shoulder, and peacefully drift off again…  Absolutely precious, yet so tragic.

Sometimes, the dichotomous nature of this disease just mind boggling.

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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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Marilyn, BA (before Alzheimer's)

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