• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Mom

dichotomous disease…

03 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma

≈ Leave a comment

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.

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

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…

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

Is this a dream?

20 Sunday May 2012

Posted by Ann Napoletan in Mom, Ruminations

≈ Leave a comment

Despite a rocky start, I had a pretty good visit with mom today. When I went in, I could tell immediately that she was agitated and out of sorts. She didn’t smile; in fact, she gave me a thoroughly disgusted look. I asked her to come sit with me, and she sternly answered, “NO!”

I turned to the girls and asked if she was having a bad day. Yep, she had been this way since waking up this morning. Okay then. Bad day, it is.

After giving her a couple of minutes, I tried again. This time, she did come over and sit with me on the couch. She was very chatty, but I couldn’t make heads or tails of what she was saying, except for the fact that she was bothered by something someone was doing. REALLY bothered. After talking quietly to her for awhile, she settled down, and from that point on was very loving. She kept stroking my face, hands, and shoulders, and at one point patted my leg just the way she used to, bringing back memories of happier times.

We sat outside on the deck for awhile, which she really enjoys. When I think back to her being at Outlook and trapped inside, unable to enjoy beautiful days like this, it makes me sad. I’m so thankful that at Eason House, she can go outdoors anytime she pleases. I believe that feeling of freedom makes a big difference in her quality of life. While we sat, she told me several times how pretty it was as she gestured toward the lovely wooded yard and ravine.

It was one of those days for me, though. I wasn’t feeling great to begin with, and I suppose the reality of the situation got the best of me. Seeing her this way; so childlike. Unable to communicate her thoughts beyond a word or two. Wandering aimlessly at times, and lighting up like a Christmas tree when one of the girls handed Dora to her… I don’t know how to describe it. “Surreal” is fitting, but isn’t a powerful enough word to describe the depth of it all. Sometimes I can’t believe any of this is real. Or that the woman in front of me is my mother…

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...
← Older posts
Newer posts →
© Copyright 2025
All Rights Reserved
The Long and Winding Road

Marilyn, BA (before Alzheimer's)

Contributor

Contributor

Recent Posts

  • The Latest Alzheimer’s Research Developments
  • National Caregivers’ Day: February 21, 2025
  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 443 other subscribers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 144,924 hits

Meta

  • Create account
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Monday ... on Caregivers
  • Telling the Story
  • Hiding In the Canned Goods Aisle...and Other Stuff
  • Walking a mile in his shoes...
  • CGSN: Focus on YOU!
  • Look for me on VoiceQuilt!
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness

Recent Comments

  • Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s | The Long and Winding Road… (alzjourney.com) | Ann Campanella on Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s
  • Betty Trimble on Film Review: Angel’s Perch
  • Carol on Caregiver PTSD: Fact or Fiction?
  • (3) Ritamae Reichardt on When Caring Takes Courage: A MUST HAVE Caregiving Guide
  • Mary Jo George on June 7, 2021: A Historic Day

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • R E S I S T Resources
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Subscribe Subscribed
    • The Long and Winding Road...
    • Join 443 other subscribers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d