Hey God, She’s Dying. Where Are You?

I’m still coming to terms with the idea that my mom is dying. It hardly seems possible. I mean, I knew, eventually, she would die. But death felt faraway. It still feels far away. If she is dying, it’ll take time. My mom was in OK shape, physically, before her sudden decline; she was decently hydrated, and like I said, the woman has a knack from coming back from the brink. She’s done it before. Why couldn’t she do it again? Never mind the fact that she hasn’t really eaten in six days … just a few bites of sorbet and sips of water through a plastic pipette.

It doesn’t feel like she’s dying. I don’t feel an overwhelming urge to sit by her bedside until she finally passes away. Maybe I should, but what is the point? Nothing is happening. She’s lying there, corpse-like. Sometimes her eyes will open, and then she’ll fall asleep again — eyes still open. I can tell she’s sleeping because she starts snoring. I don’t know what to do with myself, so I squeeze out a large dollop of citrus-ginger scented hand lotion and quietly massage her arms and hands. I say a few prayers, tell her it’s OK to leave this world. And then I shake my fist at God.

Really, you’re going to drag this out to the bitter end, huh? 

It has been ten years — give or take — since I noticed something was wrong with my mother. That’s more than 3,000 days. And here we are. Waiting. Waiting on Him. He must be Latin, just like us… we’re always late.

My mother’s family is very religious. Everyone is praying for her. And if they’re not praying for her, they’re thinking of her. There are a lot of thoughts and prayers are floating around … “You’re in my thoughts,” “Recite this prayer,” “Tell her we love her.” I’ve also been told that God will take her when he’s ready. I realize he’s very busy these days, what with mankind slaughtering one another (in His name), but surely he can move her up the list… I see it sort of like a transplant list. He’s transplanting her from Earth to Heaven. But this dilly-daddling is total bullshit. I find it difficult to believe in a loving, kind God when a) he takes his time escorting her through the pearly gates of heaven and b) this is how he saw fit to treat her these last ten years. With a terribly grotesque disease that has rotted out her brain. My mother who devoted herself to her church and to God. Frankly, I’m surprised the woman never became a nun. A life of prayer would have suited her, I think.

So here we are waiting. Waiting for her to bounce back and resume a life of nothing or waiting for her to die. Peacefully, I hope. And in a timely fashion.

5 Tips for Talking to Someone With Alzheimer’s Disease


1. Diminish distractions.

2. Converse one-on-one.

3. Keep things simple.

4. Avoid arguments (this should be number 1).

5. Just keep talking.

I would also like to add:

6. Walk in their shoes.

7. Step into their world and speak their “language” (even if it makes no sense………………… my mom was only able to articulate herself using the words, “despierta America” and “la fruta”).

8. Take a deep breath if you get frustrated (because you probably will).

9. Talk to other family and friends about how to best communicate with your loved one. They might keep visiting if they feel like they’re actually helping or supporting the person with dementia.

Sometimes, the Sharpie is Mightier than the Sword … A Caregiver’s Sidekick

Purple Sharpie…. for added whimsy

The days are finally cooling off following a blistering summer, and now it’s time to get mom ready for the chillier a.m. temps. Another blanket…. it’ll probably get lost, like they always do…….. still, I label — like an obsessed madwoman, I label everything, leaving little room for mix-ups, even though mix-ups occur and often. I have decided that it might be a good idea to invest in Sharpie stock………………. if you have a loved one in a nursing or assisted living home, you know what I mean. I can’t tell you how many Sharpies I’ve gone through, labeling my mother’s clothes, only to see them on the back of another resident. It happens. Just let it go. Keep on labeling. Indeed, it’s what we do. Yes, it’s just one intsy-wintsy aspect of what we do, but, truly, spend 30 minutes Sharpie-ing clothes, blankets, shoes and you’ll quickly realize, that’s 30 minutes of your life — wasted……………………………. plus the unintended high (or headache) from inhaling Sharpie fumes. I have lots of Sharpies. Frankly, I think the Alzheimer’s Association should sell purple Sharpies since we all need Sharpies…………. what a great way to raise money — I mean, they would make such fantastic stocking stuffers…………… and with the increased number of people set to develop the disease, well, Sharpies are certainly going to be in demand. Sharpie probably has no idea how valuable their product is to caregivers……………………. and really, they ought to donated $$$$ to the Alzheimer’s Association and/or other organizations around the globe that are committed to finding an effective treatment……………….after all, we’re a unique segment of Sharpie’s business, help a sister out!

When I buy a Sharpie, I buy it for color — will it show up on her clothes or a thick blanket? — and girth. I like thicker Sharpies. They get the job done more efficiently as you can see by the above photograph, plus it holds up when washed repeatedly. Of course, when I’m feeling fabulous, I opt for silver……………….. unfortunately, it doesn’t always show up so well, nor does it hold up following multiple washings, but it just feels magical. I know what your thinking, but hush. It’s my silver lining. Let’s face it, there is no happy ending at the end of this grim fairy tale, no light at the end of the tunnel…………………………. nothing……………………. but this grotesque disease……………. and if all it takes is a silver Sharpie to please me, so be it.

And besides, our days our numbered. My mom has a chest cold with a mucousy cough……….. I don’t know if it’ll get worse.

What I do know is that nature will take its course………………………. her maker will decide what happens next.

The Moment I Knew………. The Moment I Entered Denial

My Moment

Some exciting news came in the mail today…………………………. my contributor’s copy of the new book, THE MOMENT by Larry Smith of Smith Magazine (finally!) arrived. Over a year ago, Larry asked me to contribute something to this wonderful project he was working on, which is out and available to buy…………………… THE MOMENT contains stories by writers and artists — both famous and obscure (like me) — who share how a single moment changed their lives……… in an instant and forever.

Or as Larry puts it…………….. “The turning points, revelations, epiphanies, dramatic changes, the opening or closing of a door—in a life, a career, a love—can occur in a single glorious, terrible, unpredictable, serendipitous, crucial, calamitous, chaotic, amazing… Moment”

My moment revolves around my mom…………………………….. and the moment I knew; the moment I went straight to denial.


A huge thanks to Larry for including me in this book. I am beyond humbled. Larry, you always gave me a shot and you’ve never doubted me. Thank you!


Post Traumatic Stress Dementia

Watching my mom become agitated and anxious when she’s in my own home is stressful. We have our routine together and it doesn’t usually involve trekking over to my house, just a 15 minute drive away. However, when we do mix things up a bit and end up at my place, I can’t help but wonder she becomes so anxious because she remembers her brief stint in a nursing home and geriatric psych ward. I mean, she must, or why would she get so distraught when she’s away from her own home? Yes, it’s part of her disease. She knows what she knows and it isn’t much. So, it’s not surprising when she follows my dad around like a puppy…………………………… she does the same with me. I sometimes use the handicapped bathroom so she can be in the same space with me……………………………………………………..

My mother is OK going to church. She can hang at Target. She can usually do Ross too…………………………………………………… but taking her out of her comfort zone for very long, it’s like the walls are closing in on her…………….. She can’t sit comfortably. She’s on edge. She keeps asking to go home. She spits on the floor. So I wonder, did I cause her to feel this way? Over a year ago, we placed my mom thinking it was the right thing. It wasn’t. It was an epic disaster that spanned a month. My mom was on the verge of undergoing electroconvulsive therapy before my dad had had enough and sprung her from the looney bin. Yes, the looney bin. And yes, ECT, shock therapy. The doctor thought my then 73 year old mother was bipolar…………………………………………… not demented.

So now, I worry and wonder if my mom has some post traumatic stress as a result of her month in hell. I can only hope that her disease deleted that time in her life.

A New Diagnosis

One of my goals for this blog was to offer some tools, tips and lots of candor to those who are embarking on this twisted, ever grotesque and incredibly LONG journey. When it became painfully clear my mom had some kind of dementia, I had no idea where to turn or what to do. Everything just seemed incredibly confusing and overwhelming….. Dad was struggling to cope and I lived 5 hours away in New York City. My visits were frequent, but still…. there was always something to do or something I was forgetting to do. Frankly, figuring out the right move, which pills to give her, finding the right doctor and learning how to deal with your own baggage was frustrating and mostly infuriating…. and to drive home this point, it took me almost three years to find out that the Banner Alzheimer’s Institute was located smack-dab in the middle of Phoenix………………. all this time…. a 10 minute drive away…. were we too late?

Fast Forward…………..After convincing dad that we had to go, we finally got our appointment (and the thumbs up from the insurance company—dementia ain’t cheap folks) 2 days before my big trip to SE Asia. The result: Frontotemporal dementia.

Symptoms include:Increasingly inappropriate actions (BIG CHECK)
Lack of judgment and inhibition (BIG CHECK)
Apathy (CHECK)
Repetitive compulsive behavior (OH GOD, BIG FAT CHECK)
A decline in personal hygiene (SORTA CHECK)
Lack of awareness of thinking or behavioral changes (UM DUH! CHECK)

So do I feel better knowing that my mother is going to continue to decline and exhibit even more demented behavior? No. But I am relieved to have a new “diagnosis” (can’t really know until she is autopsied) that makes sense and allows me to understand what’s going on… I know this doesn’t change the end game…. but it gives me peace knowing that we are doing what we can to make her life and our lives just a little bit better.

Prevention, Cure………….. Hope?

Originally appeared in CNN.com and written by Kate Mulgrew. Ms. Mulgrew a stage, film and television actress who is best known for her TV role in “Star Trek: Voyager.” She is currently appearing in the NBC series “Mercy.”


After the Alzheimer’s came, my mother could not know how shadows fell across our once ebullient family: our solidarity fractured, our tempers flaring in furious incomprehension, hearts breaking in mute despair.

None of us knew how to watch this woman disappear, her features slowly masked with blankness, her supple body rigid and wooden, her absolute vividness obliterated by the heavy fog of her disease.

As those of us touched in some way by Alzheimer’s know too well, the emotional, social and economic burden of this disease is nearly unbearable:

• 5.3 million Americans are living with Alzheimer’s disease; a new case develops every 70 seconds.

• One in eight people aged 65 and older has the disease, and the risk is even higher for those over 85.

• Today, 9.9 million people are caring for a family member with Alzheimer’s.

• Alzheimer’s and other dementias cost Medicare, Medicaid and businesses $148 billion annually, a number that will grow quickly and substantially as baby boomers reach age 65.

Prevention. Cure. Hope. These are words seldom associated with Alzheimer’s disease. But groundbreaking scientific research and an opportunity for powerful collaborations could lead to discovery of the ultimate cure for Alzheimer’s disease: its prevention.

This achievable goal adds “hope” to the vocabulary of Alzheimer’s disease and holds the promise that my children and yours will never suffer its hardship.

My son, Alec, is an artist like his late grandmother. His paintings are large and uncompromising, stunning in texture, original in design. He’s got the real thing. He’s got “it,” just as she had. But what if he also has something else, like the APOE-e4 gene, known to increase the risk of Alzheimer’s? What if he is in line to inherit this devastating disease?

What I could barely endure happening to my mother, I know I could not possibly endure happening to my son.

My friend Dr. Karen Hsiao Ashe, an internationally renowned Alzheimer’s disease researcher at the University of Minnesota, has developed a research road map that calls for bringing together a group of the world’s foremost laboratory and clinical investigators in the field to make prevention a reality by 2020.

Karen is identifying the biological processes that occur in the earliest stages of the disease — long before symptoms appear — to develop cost-effective, widely available interventions.

Karen and her colleagues are homing in on a promising possibility: a pill containing the molecular compound that could block the chemical chain reaction in the brain that leads to Alzheimer’s.

So what’s the holdup? Well, money, of course, and attitude, perhaps.

According to Harry Johns, president and CEO of the Alzheimer’s Association, “No other disease causes so much suffering, is so certainly fatal, affects so many and drives so much cost with so little spent to overcome it. Why is that? Johns names ignorance, age discrimination, stigma and denial as likely explanations.

My plea is deeply personal, but by 2050, Alzheimer’s will affect as many as 16 million Americans, and none of us will be able to deny the reality. We must fight mightily now to prevent the shadow of this disease from darkening the lives of our children and grandchildren.

We must invest today in research that will most swiftly lead to the ultimate cure: PREVENTION.