Category Archives: Mom

Dear Mom…

14 Monday Dec 2015

Posted by in Advocacy and Awareness, Face of Alzheimer's, Grieving, Holidays, Inspiration, Life After Caregiving, Mom, Ruminations

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Dear Mom,

Time is a strange thing. It’s impossible to believe that tomorrow you will have been gone from our world for three years, yet sometimes it feels like forever since I’ve seen your face. And believe it or not, there are still moments when it doesn’t seem real at all that I’ll never hold your hand again. It’s those moments, when they strike, that move me to tears.

The years have dulled the pain, but there are still moments when it cuts deep and the wound feels fresh and unbearable. There are a million things I wish I could share with you – oh how proud you would be of Jess. The things she’s accomplished, yes, but more importantly the loving, kind, bright, introspective, and passionate human being she is. In the past few years, I’ve seen her blossom like never before. You would be so happy. I see a lot of you in her.

You know, we went to Italy this fall. That was a trip the three of us meant to take, but it never happened. We felt you with us, though. We saw so much that you would have adored – Florence would have been your favorite place, I’m certain of that. It felt fitting that we spend your birthday in a spiritual place, so we toured the Vatican that day. Such beauty – overwhelming to the eyes, the mind, and the heart. How I wish we’d had time to take that trip together before Alzheimer’s came into our lives. Tomorrow is never promised, though, is it?

I still feel angry about the time we missed together; I don’t dwell on it, but it’s there. If you were alive, you would have turned 79 in October, and had it not been for that abysmal disease, you would be a young, healthy, active, and vibrant 79. You would be enjoying retirement, travel, friends, and holidays. We might be baking Christmas cookies right now.

I’ll never understand why life unfolded the way it did, but I vow to make the best of every day because I know that’s what you would want. Even during your long illness, you taught me so much, and those lessons continue to enlighten me three years later. Life is beautiful… and it turns out, the little things are really the big things. I never want to lose sight of that.

In 2016, there will be a new non-profit launched to honor your beautiful memory. We’ll do wonderful things with the money we raise, both to support caregivers and families living this horror right now and to help obliterate Alzheimer’s forever. Anyone who knew you knows you had a way about you – you seemed bigger than life itself, and I promise to keep your memory alive today, tomorrow, and always.

Keep sending the cardinals…

I love and miss you dearly, forever and a day,
Ann
xoxo

Getting Through the Holidays with Alzheimer’s

19 Thursday Nov 2015

Posted by in Advocacy and Awareness, Caregivers, Caregivers.com, Eason House, Holidays, Life After Caregiving, Mom, Ruminations

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As the holidays approach, stress levels tend to rise and expectations (often unrealistic to begin with) run amok. It can be a recipe for the ultimate disaster if we aren’t careful. Chances are, if you’ve been a caregiver for a while and your loved one is in the advanced stages of the disease, you know all too well what I’m talking about.

But for those who may be less seasoned, I thought it would be a good time to share a bit about how our holidays changed as my mom’s condition deteriorated – and how we coped (and are still coping today).

Check out Holiday Hoopla: Don’t Let It Get You Down. My hope is that this short piece may help you create reasonable expectations and limit your own heartbreaking disappointments.

Holiday Hoopla was written in 2012. Mom had taken a turn for the worse in the late summer/early fall and I believed we had reached the end of the road. I canceled a pre-paid trip to Mexico at the last possible minute in September, but to everyone’s surprise, she began to bounce back a bit.

By the time Thanksgiving rolled around, Jess and I were emotionally and physically worn out. If there was any chance of making it happen, we really needed a couple of days away. Mom seemed to be doing well, stable at least. She wasn’t having the horrible days and nights that we’d experienced in September and October, so her caregivers encouraged us to take our Chicago trip.

Happier holiday times, circa 1990. Mom, age 54

They reassured us she would be just fine, and after much deliberation and a healthy dose of guilt we packed our weekend bags and drove to the Windy City. I knew Mom would be well cared for, and we would be better for having had a few days away. If anything happened, they would call and we could head back immediately.

Although we were on edge Thursday and Friday, receiving no phone calls led us to believe things had at least remained status quo. What a relief! Or so we thought.

We drove back Saturday and arrived to find the wheels had essentially fallen off the bus in those 72 hours. It was a steep decline and one from which Mom wouldn’t rebound… On December 15, 2012, she earned her angel wings.

We still go to Chicago for Thanksgiving – it has become our new tradition. The trip gives us something to look forward to instead of spending three weeks dreading the impending holiday. It’s not the same as the wonderful Thanksgivings we had as a family; however, those times are distant memories. November and December will never be what they once were. But, life must go on…and it does.

However you decide to spend the holidays, I wish you joy and peace – most of all peace. Remember that only you know what’s best for your family and your unique circumstances. Be well, my friends. Happy Thanksgiving to you and yours.

Big Pharma: Principles vs. Profit

21 Wednesday Oct 2015

Posted by in Advocacy and Awareness, Behaviors, Caregivers, Helpful Resources, Mom, Pharma, Ruminations, Treatments and Therapies

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“Med changes are always a coin toss. Sometimes they really upset the apple cart.  In fact, the [house] doc had increased one dosage from 0.5 mg to 1.0 mg a couple of weeks ago and it wreaked absolute havoc on her.  She did nothing but sit and stare into space during waking hours, wasn’t eating, had no reaction when Jess or I walked in, and was completely non-verbal…”

The above snippet is from a post I wrote in 2011, and the drug mentioned was risperdal.

I’ll forever wonder how much more harm than good was done by the various and assorted medications Mom was given over the course of her battle with Alzheimer’s. Once it was clear that Aricept was no longer doing a damn thing, prescribing medications to control worsening symptoms was nothing more than a crap shoot.

Warning: Steep Drop Ahead

Psychotropic drugs are a slippery slope. Anti-psychotics, anti-depressants, anti-anxiety, mood stabilizers. Can you imagine what the various and assorted combinations, not to mention constant changes, are doing to our loved ones?

Depakote, Risperdal, Ativan, Lexapro, Buspar, Celexa, Zyprexa, trazodone, and the most dreaded Haldol. Just a sampling of the psych drugs mom was on at one time or another.

It’s the classic chicken and egg; the symptoms and behaviors worsen and a drug is prescribed. It works for awhile, then seems to lose its effect so they try something else. The cycle continues. At what point do the drugs become a major part of the problem instead of part of the solution?

All in the Name of Profit

One of the most disturbing notions is the increasingly “acceptable” off-label use of these drugs.

Susan Macaulay recently wrote several articles on this very topic. The information shared is absolutely appalling, and underscores the reason our drug companies are often looked upon with such mistrust and even disgust. Sadly, as illustrated by the 2008 UK report Susan references, this is also nothing new.

At a minimum, we owe it to ourselves and our loved ones to be informed – thank you, Susan, for compiling this important material.

The truth and lies about risperdal and greed have begun to unfold and it’s not a pretty picture (9/17/15)

10 things Johnson & Johnson probably wishes the world didn’t now know about the way it marketed risperdal (9/18/15)

Find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales (9/20/15)

7 things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities (9/26/15)

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Susan Macaulay cares for her mother who is living with Alzheimer’s and is a recognized dementia care expert. Macaulay is creator and curator of SheQuotes, My Alzheimer’s Story,  Amazing Women Rock, AmazingSusan.com, and Succeed With Susan. She is a feminist, global citizen, lifelong learner and the author of Everyday Feminine Wisdom and soon-to-be-published “the dogs’ breakfast.”