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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Ruminations

To eat… or not to eat…

24 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma, Ruminations, Weight Loss

≈ 2 Comments

Really noticed today how thin Mom’s arms are looking.  She has definitely lost more weight.  Apparently eating wasn’t high on her list of priorities this past week.  Meds, perhaps?  Definitely a possibility, but who knows for sure.  Doc took her completely off the Depakote, which is surprising since she had been on 250mg for a long time before he upped it to 500mg a couple of weeks ago.  I definitely think that was what was sedating her, but I didn’t expect him to d/c it altogether.  Will see him on Wednesday and ask about that.  Also increased Inderal to 10mg, 3x day.

So, at least this week, she was more “with it.” Tired, but certainly not sedated. Definitely back on the emotional/behavioral roller coaster, but I’d prefer that to sedation any day. She’s back to covering the full range on a daily (sometimes hourly) basis – from laughing to crying to screaming to dancing and anything else she can come up with. It sounds like the highlight of her day today was going for a little ride in Susie’s convertible, with the top down, of course.  Just thinking about that makes me happy!

She’s at a point where she won’t eat when the other ladies are at the table. Too much commotion, and too many people in her business. I really didn’t think she was going to eat at all today, but Susie finally followed her around with a bowl of jello and Cool Whip until she got her to take a few bites. Sure enough, Mom walked over to the table on her own and sat down.

I sat down and fed her, and surprisingly she ate her entire plate of lasagna and most of her garlic bread, plus she finished the jello and a glass of ice water. She doesn’t eat by herself much at all anymore; having someone feed her has become pretty much the norm.  When she does try to eat herself, it’s always with her fingers – even if it’s lasagna. Today when she stuck her hands in there, I let her go.  WTF, at least she was eating…

As is so often the case, I left Eason House today wondering how in the hell we arrived at  this point. I look at her, and quite truthfully, my mind just can’t grasp any of it. But today, she smiled at me, laughed a little, and she was full of kisses, so I’ll hang onto the good and leave the bad behind.

Until next time… Carpe diem…

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The Mystery of Pharmacology, The Mystery of Life

17 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma, Ruminations

≈ 2 Comments

Another week has passed, and we are still struggling. Today, mom was completely unresponsive and couldn’t keep her eyes open at the dinner table. She didn’t eat a thing; I couldn’t even interest her in a bite of chocolate cake.

I read through the log book for this past week, and the consensus is that something she is taking is acting as a sedative. I suspect the Depakote, since that was bumped up to 500 mg (from 250mg), but the Inderal is also a possible culprit.  Doc wanted to double to 20mg this week, but due to the increase in lethargy, Tim advised against that, and Dr. F. agreed.

To further confound things, she is now taking Bactrim for a UTI, and one of its side effects is loss of appetite.  It had been awhile since I’d looked at her full med list, and when I did so yesterday, I thought to myself, “With all of these drugs working with and against each other, it’s a miracle things aren’t worse….”

So, here I sit ‘googling’ all of the meds, trying to solve the mystery that the great medical minds can’t seem to solve…  How silly.

It’s days like today when I really have to wonder why.  Days like today, quality of life is zero – or below.  At least when she’s happy, you can rationalize that she is having some moments of joy.  But, today – no.  Tried to get her up to take her to the couch so she could be more comfortable, and she screamed at me.  Tried to give her some cake, and she tightly sealed her lips. Talked with the girls, and she clapped her hands over her ears, then pounded the table in frustration.  There’s not a damn bit of joy or life quality in any of that.

I’ve said it time and time again over the past 5 years; I know it is not our place to question, but it’s very, very difficult to understand the point in all of this.  Joy – gone.  Dignity – gone.  Peace – gone. I barely even remember the person my mom used to be. And I’ll go to my grave wondering why; what the hell is the point of this disease?

She lived 68 good years before the signs began.  Since then, she has lived 8 more, declining little by little with each hour of each day.  While I often wonder how much longer she will have to bear living in this dark, frightening place, I also don’t want to let go of her… I can’t ask her advice any more, or have a conversation.  We can’t laugh like we used to or reminisce about years gone by.  But, I can still hold her hand… and that’s something, right?  It’s something…

I miss her so much…

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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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