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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Eason House

Easy come, easy go…

16 Monday Jul 2012

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

≈ Leave a comment

Mother’s Day 2011

So, the stretch of really good days came and went, and now we’re just somewhere in the middle… not great, but could be worse. When I stopped to see Mom after work tonight, they said she’d been up since midnight, which would explain why she could barely keep her eyes open.

Although she wasn’t very interested in dinner, I did get her to eat almost everything on her plate. She was really quiet, though. Nonverbal, which is so odd for her. Aside from the big smile that lit up her face when I came in, she was mostly expressionless. I think I hate this almost as much as the explosive outbursts.

Speaking of outbursts, it seems over the past week, she’s gotten angry enough to slap several of the girls – hard – across the face.  Ah, that just makes me cringe. She has the best caregivers in the world, literally, and they don’t get paid enough to put up with most of what they have to deal with (did I mention Mom also showered one of the girls with her applesauce this morning…). Thank God there are people like the amazing caregivers at Eason House, who certainly don’t do what they do for the money. To say they are a blessing would be a gross understatement. There has to be a very special gathering spot in Heaven for each and every one of them.

As I sat there feeding Mom tonight, I had one of “those moments.”  The surreal moments where I’m mystically transported, and suddenly I’m on the outside looking in. I stand back and take in the scene before me, and just can’t believe this has become our reality. By now, none of this should be shocking, but it is at times. It truly is shocking. Perhaps it will always be that way. Perhaps I should stop letting that surprise me.

What can we do, but continue to take things one day at a time and avoid falling into the trap of worrying and wondering what tomorrow, next month, and next year hold.  We try to focus on the moments of joy and the fact that one day, there will be a viable treatment and even a cure.  It may not come in my lifetime, but it will come.  Studies like this one from Iceland, where researchers have identified a rare genetic mutation that appears to protect against Alzheimer’s; someday the world will know the benefits of research that takes place every single day, across the globe.

So, our visit ended after Mom finished her dessert. I walked her over to the couch, and covered her up with her favorite blanket (Steelers, of course!).  I put my arms around her and she fell into a peaceful sleep… Sweet dreams… ♥

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Ridin’ in Style

03 Tuesday Jul 2012

Posted by Ann Napoletan in Eason House, Humor, Inspiration, Mom, Pharma, Smiles

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This past Wednesday, Mom had an appointment with her neurologist. Susie offered to go along, which is always extremely helpful. Since she spends the most amount of time with Mom, I really appreciate having her there to answer the multitude of questions he asks regarding moods, behaviors, et cetera. Not only did she go, but she drove her convertible so that we could ride in style.

Seeing my mom SO happy on that trip to the doc was absolutely priceless. She laughed and laughed, pointed at this and that along the way, jabbered emphatically, and waved her arms, all the while her hair blowing wildly in the wind!

I got a few fantastic pictures that will continue to make me smile for years to come… Here are the highlights.

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The appointment itself went very well.  She was having another wonderful day, and never stopped laughing and joking the entire time we were there. Seems the most recent med changes are yielding definite improvements, so we’ll remain status quo for now. He was concerned that her blood pressure readings were unusually low and wants to keep an eye on that, which might ultimately mean a change to the blood pressure meds.

For now, though, we’re just enjoying the good days.  

… Until next time… carpe diem…

 

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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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