6 Questions You Need to Ask Before Placing Your Loved One with Dementia in an Assisted Living Facility

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I was sitting at lunch with a colleague when I got the call. “I need to talk to you about your mom. She’s not fitting in.” Of course she’s not fitting in. She has dementia. Our exchange was brief. I asked her why, and then I got angry: You met her at the psychiatric hospital, you read her paperwork, you accepted her knowing every last grisly detail… you knew everything! After hanging up the phone, I walked back to the table thinking, “Not again.”

Behaviors stemming from Alzheimer’s disease or other dementias like Frototemporal dementia might mean placement in a traditional assisted living facility will be difficult, if not impossible. And even those facilities that claim to deal with dementia or Alzheimer’s-related behaviors don’t. At least that’s been my experience.

Since 2009, my mother has been asked to leave two assisted living facilities and one group home — all of which were licensed to deal with dementia/Alzheimer’s patients (one place boasted about the specialized dementia training they gave their caregivers) and, in theory, her behaviors —  and spent time at two geriatric psychiatric hospitals, where she was “stabilized” with drugs including, lithium, depakote, zyprexa, and the list — quite literally — goes on. One doctor even wanted to perform electroshock therapy, claiming her behaviors were the result of bipolar disorder (she was in her early 70s at the time and had never exhibited bipolar behavior). Being asked to leave a facility was, by far, one of the most stressful, awful, even embarrassing experiences of my life… How could this have happened? Where are we going to go? What do I do? Did this really have to happen on a Friday? Unfortunately, one of the lessons I’ve learned over the years is that somehow, you must stay one step ahead of the disease. I confess, despite knowing this, I’ve failed miserably. I can’t keep up with it. It jumps around, it’s quick… it’s unpredictable.

Ask me if I feel like I’ve made my mom’s life better and I’ll tell you no… but I did the best I could  with the knowledge I had at the time.

Fortunately, I’ve crossed paths with several incredibly smart people along the way. Did I mention this disease involves networking? People who are not just elder care experts, but folks who are on the front lines — some of them have even lived through it… they not only see, they know how difficult it is for families to survive, day-in and day-out. They know that dementia is not always a quiet, peaceful disease. And they know that sometimes, families have to choose between bad and worse. “Selecting an organization is not easy,” says Tena Alonzo, the Director of Dementia Research at the Beatitudes Campus in Phoenix, AZ. “Often, family decision-makers are called on to select the organization quickly. This can be a recipe for disaster and one that contributes to extreme remorse and guilt.” So, when it comes to finding an assisted living unit for a behavioral parent, what questions should you ask to hopefully avoid placement in the wrong facility? Below, Tena shares her suggested questions:

  • Describe how you will get to know (name).
  • What is your policy on personalizing daily routines? Can (name) sleep when they want or need to? Can s/he eat when hungry?
  • What is your staff-to-person ratio, and what is the average length of employment for staff members, overall?
  • What is your policy for communicating with (name’s) decision maker?
  • How will your organization honor (name) wishes for spirituality and end-of-life?
One last question:
  • Since 90 percent of people with dementia experience changes in personality and behavior, how does your organization address challenging dementia-related behavior?
“If the answer is, ‘We use medications or we discharge them to the hospital,’ RUN,” says Tena.
According to Tena, the appropriate answer would be:
“Dementia-related behavior is part of the dementia process. We know that the person communicates through their actions, and we will do what we can to interpret the meaning of the person’s actions and take care of whatever might be triggering the dementia-related behavior.”
She says, “this basic method for addressing dementia-related behavior separates the organizations that provide quality dementia care and service and those that don’t.”Of course, at the end of the day, according to Tena, the best advice is to choose an organization well in advance of when the person needs it.

Reverse Empty Nest Syndrome

http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.


Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.


“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

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.

A Letter to Those Businesses And Professionals Who Make Dementia Even More Agonizing

Dear hospice and nursing home (names of providers removed because I have enough problems, frankly),

Thank you for making late/end stage dementia even more awful by not coordinating your care of my mom, by failing to communicate with me, by making me feel like I’m making poor decisions on her behalf, by one day telling me, no, she can’t feel hunger (hospice) and the next day, telling me, well, she could feel hungry (home)Thank you hospice and nursing home for your conflicting care and for not informing your staff of little changes. Thank you nursing home for ignoring me month after month when I begged you to lower the dosage of her psych medications……………………. it was good to see that you finally took action after she fell flat on her face because she was so zonked out. Thank you for the confusion, thank you for making me feel like the bad guy. Thank you for making me re-tell the story of how we’ve been treated over the last several years by psychiatrists who would dope up my mom to keep her from screaming (yes, this is how we treat our demented elderly, folks). Thank you for reminding me that I am alone in this. Thank you for making it clear that this — dementia and long term care — is a business and a lucrative one at that (especially if you go the private pay-only route).

Thank you knocking me down yesterday……………….. because now I’m back up on my feet. Slightly bloodied (nice kick to the heart, by the way), and ready to get the shit kicked out of me yet again, because I am right and you are wrong.

I know my mother.

One more thing: Thank you for reminding me that part of my duty is to one day help government work toward and eventually craft death with dignity legislation………………… we are so quick to fight for life, but we lack the courage to face death and say ENOUGH.

To slowly die sitting in your own feces, unable to eat, speak, walk or do anything that makes us human, does not guarantee you a place in heaven. It simply serves as a reminder that we are still living in dark ages.

I expect to be burned at the stake for that.


The daughter who asks too many questions, the daughter who fights and pushes so she can get her mom the right care, the daughter who has endured the stares and the whispers, the daughter who diagnosed her own mom when the doctors failed to, the daughter who has lost a lot ( A LOT) of sleep over the past 8 years, the daughter who visits her mom almost daily, the daughter who holds her mom’s hand, the daughter who makes the really hard decisions no one ever wants to make, the daughter who is more often than not dismissed by medical professionals, the daughter who has to fight so her mother can have just a drop of dignity.

She Yells Too Much Or Finding Another Home

Just Breathe by Meredith Farmer

I got the call while I was on assignment in Tucson with a colleague. “I need to talk to you about your mom. She’s not fitting in.”

Of course she’s not.

She has Frontotemporal dementia.

She yells.

You knew this.

You accepted her knowing she would yell.

I hate you.

I returned to our table. We were having lunch. My face got tight. My mood had changed.

Still, I think I recovered pretty quickly.

Afterall, I had been to this rodeo before.

After mom’s stint in the psych unit, she was accepted into a dementia unit some 20-plus miles from me. I hated the distance, but it was the only nursing home that would take her. Medicare hates it when you spend too much time in a psych unit. The stay is costly. And, as a result, the psych unit, tries to churn you out of there ASAP.

This means experimenting on you with drugs quickly. Zoloft one day. Lithium the next. They find a cocktail of drugs to “stabilize” you and then off you go into the big, bad world.

The social worker at the facility spent some three weeks e-mailing and calling and faxing packets of information about my mom to various facilities around town. Not one would even entertain the idea of personally assessing my mother………….. The yelling. It was a serious issue. It disrupts other residents and can agitate them. Once they read that in the report, it was GAME OVER.

The social worker assured me we would find something. If not, my mom would stay at the psych unit……………. the idea caused me to lose sleep, but after a while, the notion was comforting.

Believe it or not, you adjust to lousy situations very fast. Plus, she was acclimating to her surroundings……………..

I hated the idea of moving her again, and after everything she had been through just to get admitted into the unit — 10 hours sitting in the Emergency Room, sticking something into her urethra just to get a urine sample — I just wanted her to have some peace and quiet. I wanted some peace and quiet………….. Plus, I was getting to know the staff, calling them by their first names…………..They knew me too: The daughter.

Margarita’s daughter.

One happy family.

During one of my visits, the social worker walked up to me with a huge smile and said, XYZ nursing home is going to take her. The director of admissions came out, met my mom, didn’t seem overly concerned about the yelling and said yes. I had never heard of the place. I started to panic. I knew ALL of the best facilities in town………… or at least the ones that earned 3-5 Medicare stars.

This place wasn’t on my list.

I researched the place and was not happy with the number of stars earned. My friend who works in the elder care industry had heard mediocre things……………… Unfortunately, I had no choice.

Do I keep her in a lock down facility where she could never go outside and possibly get even worse or place her at a state-approved nursing home.

It was the only home that would take her. I had to place her. I couldn’t take her home. My mom is a full-time job requiring 24/7 care.

Funny thing about this disease, or at least my mom’s disease, you have to learn to let go. You have to learn that you will never get the very best…………….. Especially because money is involved and wait-lists to the places that might actually help my mom are long.

While the rest of the world is picking a fight over birth control; I am fighting for a bed for my dying mom.

While the rest of the world tries to get rid of any kind of social safety net like Medicare; I worry that one day we might lose the aid we receive; then who will take care of my mom? Sure, I could quit my job, but then who will take care of me financially and my mom? Allow me to reiterate: My mom is a full-time job.

While the rest of the world is fighting about when life actually begins; we let the living elderly rot.

What is wrong with our world?

I see the world as one giant, mostly empty glass. I don’t care for optimists because optimists have not suffered. They have not witnessed suffering. They have not walked a mile in the shoes of someone who is suffering.

I am a realist-slash-pessimist. I am aware that I have my limitations. I can only do so much to help my mother now. I also don’t get my hopes up that things will work out…………………. like when she gets kicked out of a nursing home.

Things don’t always work out.

Then again, sometimes they do………………… but I refuse to get excited about it, because something always interrupts the small victories.

We found a bed for my mom. A good bed. She will be transfered to a unit that has a great reputation for dealing with behaviors.

Every resident at this unit has been kicked out of a previous home (or two). My mom will be in excellent company.

Unfortunately, as the new administrator told me, you have to fail to get to here…………….

True story.

Alzheimer’s Documentary Sheds Light on Disease… OR You’re Looking At Me Like I Live Here And I Don’t

Lee applying lipstick
Photo by: Phillip Maisel

Media often plays it soft when it comes to the portrayal of Alzhemier’s disease on TV shows, in the news or in movies………..… that is, they skirt around the complexities surrounding the disease, the emotions, the financial implications, the long-term toll…………. Sure, some works are more adept than others at portraying the effects of dementia………. The short film, My Name is Lisa, hit on some of the more brutal realities of the disease, specifically, the toll on children…………..… Others, well……………….. The TV show Raising Hope superficially touches on it — sort of — with its character Maw-Maw………. of course, her senility is used to get laughs. The movie The Savages annoyed me more than anything else………”irreverent, hilarious”……….. not so much. Away From Her was a beautiful film, but, for me, it was too easy — the character with Alzheimer’s chose to move into a nursing home and her adjustment was, for the most part, seamless. The movie actually left me feeling worse about my own situation………. Why can’t my mother be like her? Am I doing something wrong? God, I wish my mom were like her…….

The truth is, dementia is a hard story to tell. It isn’t a sexy story. There are no survivors, so no happy endings. Alzheimer’s disease and other dementias are incredibly grotesque…….. twisted……. disturbing………. and until we start having an honest, more mainstream conversation about dementia, it will continue to be the disease that gets swept under the rug…………… Let’s face it, no one really wants to talk about “that.”

Until now. Documentary filmmaker Scott Kirschenbaum does talk about “that” in his film, You’re Looking At Me Like I Live Here And I Don’t premiering on PBS’s Independent Lens Thursday, March 29 at 10-pm (check local listings).

That title pretty much sums up this beautifully poignant yet jarring documentary about a woman named Lee Gorewitz who lives at the Traditions Alzheimer’s & Other Dementia Care Unit at the Reutlinger Community for Jewish Living in California.

Kirschenbaum doesn’t do much talking. He doesn’t hold your hand throughout the film. He doesn’t make you feel at ease.

In fact, when the film opens, you can’t help but feel disoriented, even confused because you’re given no sense of direction, but then, that is his point…………….. and then you meet Lee.

Charismatic, delightful, even poetic, Lee takes your hand and guides you into her  world…………. a world of disconnected, fleeting memories………….. a world she’s trying to piece together and navigate in her own way. Lee has Alzheimer’s disease and this is her story…………. a first-person account. We don’t hear from her family, her friends or her doctors — Kirschenbaum did that on purpose. “It needed to be wholly about Lee’s present-day existence within the walls of the Unit.” Watching Lee tell her story is humorous, exhausting and heartbreaking all at once…………… to watch this woman quizzically stare at family photographs, to read a card addressed to “Mom” and not realize she IS mom, to watch her dance and smile, only to later tell another resident that she’s going to die……………..

Kirschenbaum refuses to sugar coat the disease.

We see Lee as she is…………… Kirschenbaum sums it up best: “In the span of minutes, Lee would morph from pensive thinker to gregarious helper, from bubbly mover-and-shaker to morose and sometimes cruel instigator.” His decision as a filmmaker to leave the grotesque intact is brave. As an outsider, it’s often difficult to understand what the individual goes through — as well as their family — until you have witnessed these unsettling scenes unfold.

Lee is a remarkable woman……………. you can’t help but fall in love with her………… you can’t help but want to reach out and comfort her, laugh with her, cry with her……. And despite everything, she’s resilient…………. or maybe she knows she doesn’t have a choice…………… this is her life and she must keep going……………. even as the walls are closing in on her.

“Widowed, cloistered, and slowly undone by her inability to think or speak clearly, Lee has every reason to succumb to the expectations of her conditions. Instead, she defies despondency. When she breaks down, she rebuilds. When she loses words, she summons emotions. And, despite the small defeats of her efforts, she remains an exceptional and resilient soul.”

I talked to Kirschenbaum about his remarkable film below:

There’s no narration. Why did you decide to let Lee tell the story?The goal from the onset was to place the viewer in Lee’s world — in this time of her life — and not rely on her past or someone who lives outside the Alzheimer’s Unit to tell Lee’s story. I wanted to let Lee communicate to the audience. I think, in essence, there is a narrative but it’s not a conventional Hollywood narrative. This is the fragmented reality of Alzheimer’s. There was a method and strategy as to how the scenes were oriented, one after another — as an Alzheimer’s odyssey.

You show the grotesque in your film, which is unusual… why did you decide to go there in your film?
For me, I know if I’m going to explore an Alzheimer’s unit in earnest, the entire continuum of emotions needs to be evidenced in the final film. Just as integral to showing Lee telling a joke in front of a caregiver was showing the most painful images that occur in Alzheimer’s unit. I want the audience to see that there’s a great deal of humanity and to be fair to what actually occurs in that environment, so audiences can be clear on what this world is, so they can hopefully connect with this world on a human-to-human level.

Has this film changed your view on aging?
As a filmmaker, I’m trying to explore difficult and challenging environments. I feel more connected with life and living by making films more than any other work. There was a sense of urgency in making this movie … I know about the emotion and the psychological impact its had on me. I feel a sense of gratitude that I was allowed to make this movie, to befriend Lee and the other residents, and was allowed access to this beautiful and depressing world. I want to be someone who has the capacity to hold space in my life for these kinds of relationships.

You said you wanted to target younger people with this film… Why?
The entire film crew were in their 20s and 30s, so as a young group we wanted to go there… I know some of the most impassioned advocates for Alzheimer’s awareness are young people and I wanted this to be a film that they can rally around and be excited about. In my dream scenario, this movie is for all age groups. This is a reality. Alzheimer’s is not going away. It’s worth everyone’s time to experience this… to get comfortable going to an Alzheimer’s unit or nursing home and trying to connect … We should not ignore our elders no matter how debilitated they are or difficult their situation is.

You’re Looking At Me Like I Live Here And I Don’t will air on PBS’s Independent Lens this Thursday, March 29 at 10-pm (check local listings).

Mom Gets Kick Out; God Laughs

Photo by Meredith Farmer

I had so many noble ideas for this week’s post….. I was feeling good. I started thinking about how this — life — was some sort of test, a means of proving one’s ability to persevere and not succumb to the easy-outs; because by staying the course, we’ll somehow achieve spiritual bonus points. I was arrogant, I suppose…….. I thought I’d done so well, not losing it that is……………..I mean, I know people who were tumbling into a deep pit of depression and they had nothing significant going on their life — other than too much time to think………………….. I was proud of myself. I thought we were going to be OK for at least the rest of the month until tonight, when I was informed that my mother had 30 days to pack her stuff and leave the home.

Mom yells. She spits. She does have a bit of a poopy reputation.

Other residents have been complaining. Complaining to their families. I suppose it boils down to money — why risk losing one or two relatively easy residents versus my mother? She has never been easy to deal with. Her disease is especially trying……….. I would probably do the same. Nursing home care is a business. A big business that’s only going to boom over time. I got word at 5:00 p.m. I started calling facilities as soon as I hung up the phone. Unfortunately, I am limited in terms of where I can place her. Her behaviors, the result of frontotemporal dementia, mean I can’t place her just anywhere………… I need to find a behavioral unit. And those are few and far between here…………… but she’s not violent, so I risk placing her in a home where she could be the victim. My mom’s behaviors are of the benign variety……………. she yells, she spits, she gets into her poop from time to time……………… but they are behaviors and it seems things are pretty black and white when it comes to nursing homes………………………… people do not want to deal with behaviors.

So here I am. I have no idea how my father is going to take this. I dread the conversation; I just don’t know. But there’s no one else………………………..

I saw a shaman once who told me that the source of my mother’s disease (and my own) could be the result of an agreement we made in another life (I know, what was I thinking? Why would I agree to such a dumb pact?)……………. I can’t help but think about that…………. did I do something horribly wrong. Is this my punishment………….. in this lifetime? Or was I perhaps some saint who agreed to participate in this life with my mother, who, clearly, was also a saint in order to voluntarily go through this.

Or, is this the act of God; a vengeful God……………. one who is enjoying this…………… watching his puppets suffer.

(I don’t believe in a loving God. That makes no sense once you step back and ponder all the suffering going on in the world).

Or maybe this is Hell. People experiencing varying degrees of Hell, but Hell……..

Whatever this is, I am less fearful of death………………. Sometimes, I think, well, at least all of this will be over with and death is probably less stressful…………….. It’s terribly tragic way to think. I know that.

Last week, I was accused of wanting to sedate my mother by a psych nurse practitioner’s partner. My mother was grinding her teeth so badly, you could hear it if you were standing 3 feet away from her. It pained me. It kept me up at night. I asked the nurse practitioner if she could do something; increase her medication; something; anything……………. she dropped my mother, said I should find someone who shares my “philosophy” of caregiving and then that response by her colleague. Talk about knife in gut…………. I took mom back to Banner Alzheimer’s Institute that same week……………….. they looked at what the nurse practitioner was giving her……………………….. it was wrong; they added and increased her meds.

They also removed the Robitusin PM that was being given for her cough (cough? what cough? I called the home…. oh, she has a cough once in a while…. it’s as needed.). 

Yeah. A cough.

Then, one week later, we get the boot. I don’t know how much more I can take…………. I can’t even imagine what “normal” feels like. The glass is always half empty — there’s not point in being optimistic about things because they simply do not work out when it comes to this disease……………………

I always wanted children, I used to day dream about being a mom, I had baby names picked out, I thought about outfits and how I would dress my kids………………..and now I can’t even see that as a possibility……………… it’s just slipping away. I just can’t fathom doing all of this and raising a baby. I have my hands full with two parents, a job, a relationship, friendships (I feel like I suck at all of the above most days)………………

And I’m afraid that God will continue to punish me. I truly believe that he will give me a child that has some terrible disease…………….. and you can’t give them back once they’re out. Thing is, I don’t think I can continue to fight for another person. I can’t do it. I can’t care for a sick person……………not for the rest of their life. I don’t know how people caregive a child into adulthood…………… Still, it breaks my heart every time I see a baby picture, a big belly, an ultrasound or anything of the sort…………………. it reminds me of what I don’t think I’ll ever have.

I will be 35 in three weeks………………. and this is my life.

I’m tired.

>>Flickr pic by Meredith Farmer

Part Two… Behaviors Vs. Behaviors

Almost anyone dying from dementia suffers from behaviors. Behaviors are simply part of the game when it comes to this disease… BUT, there are “behaviors” and then there are “behaviors….” something no one can clearly define.

Here is my personal definition (and opinion because I’m a writer, not a doctor): Bad behavior – throwing your feces at someone or taking a sharp object and using it to attack another human being/caregiver. Tolerable behavior – spitting on the floor. 

My mother suffers from the latter………….. she spits on the floor, especially when she is really agitated. It’s how she acts out. She’ll yell, “Despierta America!!!” when people are doing things to her like thrusting a catheter inside her. She hates showers, so she’ll cause a ruckus. OK, it is important to try and put yourself in my mother’s shoes. She has no idea what is going on around her. She CANNOT communicate. She cannot tell me if she’s in pain. She cannot tell me if she’s happy.

The only two places on the planet right now that are remotely familiar to her are her house and her church.

Imaging being picked up and dropped off in the middle of Jalalabad, Afghanistan. You can’t speak the language, you have no idea who is on your side, who wants to help you, you don’t know where to go…. people approach you, what would you do? 

You would probably behave VERY inappropriately.

There was a time when my mother did act out. She would push me over to run to her boyfriend, The Priest. Sometimes, when I would try to restrain her from running into the church aisle, she accidentally hurt me………. wrestling in a tight pew can cause bruising and minor scratches. There was also a time when my mom would do things to get out of our locked house (she wanted to walk to church, her happy place)…………….. She took a pair of scissors and cut the screen door to try and get out. She used to spit — a lot. She would use the stove or microwave objects that clearly state on the label, “Do Not Microwave or You Will Burn Down Your House.”

My mother most definitely went through a very, very, very difficult stage. She gives new meaning to the Terrible Two’s………….. more like Terrible 70s.

Today, she’s mostly mellow. Medication helps that, but lately, even without the meds, she’s kinda quiet — except when you give her a shower……………… most demented people HATE water……………….. poke and prod her, force her to eat something she just doesn’t like, or you steal her hot water bottle……………. the thing is like her baby blanket. 

Or when she sees me. She talks to me….. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta.

I understand.

After being told my deadline at the hospital, I got to work. I started making calls………. and then a miracle: ALTCS came through at around 330pm that same day she was rushed to the ER……….. I could place my mother. Somewhere.

Now in the name of honesty, when dealing with any type of home, you have to tell people what your parent is like because if they aren’t a good fit at the facility, it’s just a bad situation for everyone.

I spoke to one woman and told her about my mom’s current “behaviors.”

Her (paraphrased) response: Well, you know sometimes with behaviors, they end up in a place like St. Luke’s, which deals with behaviors.

My (paraphrased) response: Wait. St. Luke’s as in the psych ward? No. No. My mom ended up there a few years ago and they wanted to do shock treatment. No, I won’t do that.

Her (paraphrased) response: You know sometimes you have to be open to other solutions…. I mean, would you rather have your mother sedated all the time or maybe something like shock treatment might improve her quality of life. You know, shock treatment is not what you think… it has evolved a lot.

My (paraphrased) response: Uh-huh. Um OK. Well I’m still thinking. OK. I’ll call you back.

That’s the challenge. Right there……. that is the challenge. This is my mother and you have the nerve to bring up shock treatment — I mean, electroconvulsive therapy?

Makes you wonder how many of these folks would strap down their own parent (or child) and “medically” induce seizures so they can eventually be tolerable to their caregivers?

Behaviors are indeed difficult and tricky…….. but are we really this savage, this primitive?

A conventional nursing home was likely not going to cut it (I had called another place and was met with a similar response and then she told me they had no beds)………………. and since the nursing home of my dreams had no beds (they take in some of the trickiest patients, and have some amazing success stories sans ECT)………………. I started exploring group homes.

Perhaps a home-like setting would be the ticket. Still, I kept her on a waiting list for my dream nursing home…………….. just in case now and for the future.

I can’t tell you how difficult this was. At this point, I had maybe less than 24 hours to find something. Some homes were so-so — tolerable. Others reminded me of Deliverance. The woman at one place had only three teeth, which is fine, except I wondered, if you can’t even take care and maintain your own oral hygiene, how can you possibly care for my mother? Another place was amazing, stunning, perfect……… Dad and I agreed: this would be the place. I called less than hour after seeing the house and no call back. I texted. She texted back saying she’d call me later. I told her I wanted the room. Loved the house. “Tx,” she replied. I thought I had found the place. By 7pm we connect. “Um, I am so sorry but the room was sold, but I have a place in Surprise and then I will have availability in four weeks,” she tells me in her Eastern European accent.

Four weeks? You sold the room? Surprise?

The running joke with Surprise is that when you arrive in Surprise, you say, “Surprise, you’re in California!!!” It’s that far from downtown Phoenix.

I was desperate. I hadn’t found anything yet. I agreed to go to Surprise the following day.

In the meantime, dad found a place near his house……………. literally a couple blocks away. He wanted her close. He wanted to place her there. At this point, I was beyond pissed. I had had it. I was fed up. Tired. Smelly. Constipated. And sick and tired of my life.

I agreed to see the place.

I liked it.

It didn’t smell sick.

It didn’t smell over-perfumed.

It felt normal.




I over emphasized her behaviors.

They didn’t seem to mind. They seemed capable. The house was simple, yet very clean. The residence didn’t look as though they were housed in some wretched cage. It was close too………….. always key.


Eastern European chick called me Monday morning to tell me that a room at the original house had opened up. Miracle. “Please come to my house. Please. I have 16 years of experience. Please bring your mom here,” she said.

Fuck off.

I didn’t say that. I thought it.

>>Flickr pic by Howzey

Part One… The Beginning of the End

Life with my demented mom was proceeding rather smoothly in recent days………………. by smoothly, I mean mostly bumpy, lots of twists and turns, blind spots and a few “watch for falling rocks” signs dotting the road………….. And then she drank dish soap. The trauma of vomiting and ingesting something that should never ever be ingested took its toll. She was bed-ridden, refused to eat, slept for hours on end, and it all came to a head last Friday. I came over after calling the house………… my dad and I were supposed to have lunch…. I was hoping she would feel better by now….

“Um, yeah, Kath, I can’t get her out of bed. She peed in the bed.” I left work and headed over. I thought I could fix this. I’m the fixer in the family. I fix things when they go horribly awry. I tried to get her up, gave her some Pedialyte, and finally decided to call 911.

A truck carrying what seemed like a dozen first responders came to the house….. they took her vitals, tried to talk to her (um, I said she is severely demented), and then we waited for the ambulance to come. Small talk is always awkward in these circumstances……. So, when did she get sick? How long has it been going on? Are you an only child? I was sitting on the bed right next to my mother who was still lying in her own urine. She had refused to move and I couldn’t push her over………. she’s still stronger than me. What a sight.

Until this blog, I’ve mostly omitted what went down, instead focusing on the dreamy EMT who tended to my mom….. EMT Scott. It’s easier to focus on the mundane and mild versus the traumatic and grotesque. It’s also probably best for my own mental state. No one should have to see their parent in such a horrifying way.

Meantime, I wondered what they would tell their families when they got home that night….. Christ, you won’t believe what we walked in on. What a fucking mess. What the fuck is wrong with people?…. In the ambulance, I apologized to one of the guy who was riding in the back with me…. I tried to explain my situation to him. “It’s cool, don’t worry, you can’t even imagine what we see…. this was nothing,” he tells me.

I forced myself to believe him.

I wonder what his family is like………..

Soap, as it turns out, wasn’t the issue….. Fun fact: soap goes right through you, so manga!! Eat all the soap you want. You’ll puke it or poop it out. But it won’t kill you.

We arrived at the ER around 11 or 11:30am………. several tests, a shot of Ativan and a catheter later, and nothing. There was nothing wrong with her except that she was dehydrated. And demented. Severely demented.

And by severely demented, I mean severely demented.

Of course, her disease and dehydration didn’t really matter……………. what mattered was the insurance company. And the insurance company was apparently saying that mom needed to be released like the next day. A nurse asks me if we can take her to a group home.

This is not how I planned to place my mom.

A group home?

She has a catheter inside of her body. She has an IV. She can’t move. You want me to find a group home so you can discharge her less than 24 hours later? Um. Fuck you. She’s staying. I will not be rushed into anything…. not again.

Sarah the social worker comes is…. she’s cool. I explain the situation….. At this point, mom can’t go home. Dad can’t handle her anymore, it’s taken a severe toll on his well-being. And clearly, she can get into anything. It’s time for her to be placed, but a few pieces of my plan were not yet in place……. namely, no ALTCS, Arizona’s Medicaid. We were “ALTCS pending.” Dreadful status and NOT what a home wants to hear………… So, I might be able to pay you, just not yet. Maybe next week. But can you like take my mom and take good care of her?

The truth is, it’s a business…. but I’ll get into that later.

I told Sarah where I wanted my mom to go….. I had researched this place. I had a plan to essentially get her used to this place…………………. What happened next was always a possibility. I was just hoping God was on my side.

Man plans. God laughs.

There are no beds and there’s a waiting list. 

And so began the mad rush to find a group home, a nursing home, a place that would take my mom……… I hate deadlines. I write for a living and deadlines are a part of my life. Granted, I do better with deadlines, but this deadline was bullshit.

>>Flickr pic by Elycefeliz

Blood and Water or Family Dynamics

I’m feeling lonely again. I hate this feeling. It’s a feeling usually mixed with sadness and hurt. Potent combo. Can leave you in a funk for days….

A little context………………… my dad and I are once again talking about nursing homes…. mom is just getting to that point where caregiving is difficult. She’s having more accidents and she’s had a few other truly demented moments…… trying to eat raw chicken, wiping herself with a maxi pad wrapper (that was Sunday’s WTF moment — she took the wrapper out from the tampon bin)….. we do our best, but the woman needs constant, 24/h care.

I was mid-pee when she walked into the stall, peed and wiped with a maxi pad wrapper……….. so much for wait for me.

The nursing home topic is a sensitive one at our house…. my dad hasn’t wanted to even discuss it since “the incident…” the one inside the bin until recently. He’s tired. Caregiving is a stressful job, one that is often ignored and the toll is terrible…. depression, anxiety, sickness, loss of wages, etc….. So we’ve started talking about it, and this evening, I started doing a little preliminary research.

In the middle of my search, my cousin sent me an e-mail… nothing to do with my mom; I sent her an IM with my response…. we started chatting. The topic of my cousin, the one who was upset at the name of my blog (among other things) came up…… I started to feel those feelings again…. just hurt, resentment, frustration and anger….. the usual suspects. I recently sent her an e-mail congratulating her on some news and we e-mailed back and forth for a bit…. nothing more….. yes, this could be called progress, but I think it’s unlikely. I know that our relationship will likely never be repaired, something about the whole ordeal bothers me….. it’s like this itch. This annoying itch that’s turning into an oozing sore.

And then the stories pop into my head.

A little background………………. my cousin and her brother scolded me publicly on Facebook in front of other friends and family (I had posted pictures of my mom and titled the album, “My Demented Mom”)… Take that down. This is not a joke, wrote my cousin

Really? I thought this whole situation was rather comical……..

Thank you, wrote his sister.

I retorted, calling her passive aggressive……………… the retorts escalated and went back and forth from there………….. At the end of the day, things could have been handled better by both sides……. still, I can’t shake that virtual dialogue.

I suppose because I wonder what my mother’s family thinks of me………………… My Demented Mom is lost in translation……………. despite translations.

Or, maybe what’s really getting my panties in a severe twist is this…………….. do they care about me as much as they care about my cousins?

Would they, or do they, defend me?

Where do I fall on the family totem pole?

I guess that’s what it comes down to………….. am I truly alone? I feel like it.

A lot.

Yes. I am aware of my own flaws and fault. I have a few………………………….

It’s easy to say, “I love you,”  “I’m here for you,” or “Thinking of you,” but when it really matters, do we actually mean it?

 Do they mean it?

Would I mean it if the roles were reversed?

Do they ever wonder if I’m sinking under the stress? Would I wonder?

Do they know that I have cracks in my own facade? Would I know?

Family dynamics are always tricky when it comes to a serious family illness… old resentments and new anger festers until it just explodes………….

I don’t know why this still bothers me. I wish I could let it go, but I can’t.

I’m still clinging onto my own hurt feelings.

It sort of makes me want to run away from everyone………………

Maybe blood isn’t always thicker than H2O.

>>Flickr pic by my favorite Meredith Farmer


My mom pooped her pants.

Actually, it was a tiny accident. She can control her bowels (and her bladder too)…………….. you just have to get her to a bathroom when she has to go—cause let’s face it: When you gots to go, you gots to go. I tried. There was a line. I rushed her to another bathroom. I failed. It was a smudge. A large-ish smudge.

Although, this wasn’t a huge mess/misstep/or even a big deal……… this accident got me thinking (well, I’ve thought about it, but I try to repress it)…………. what will happen when accidents become every day occurrences?

What will happen when she can’t wipe herself?

Wiping is such a funny, mostly strange rite of passage-slash-human experience… when you’re able to wipe on your own, you’re a big kid. When you can no longer perform this act solo, you’re an invalid.

As the child of a parent who will eventually have to be wiped by another human being, I really don’t know what to make of it. I mean, I’m writing about it, but I don’t have any profound words to share nor have I made a startling realization about life and its meaning, etc, etc, etc, blah, blah, blah…….

I guess all I can say is that at that point, we’ll likely have to place my mom in a facility, and that scares the shit out of me. We’ve been down that road……. it was brutal, emotional, messy and grotesque. I sincerely hope to never have to relive that horrendous experience ever again…………………… I hope she never has to relive that again.

Right now, my mom knows where HOME is.

So while the woman may not know my name, her husband’s name, or what year it is, and she may use the phrase, “Despierta America” to describe everything from the clouds in the sky to her most favorite food in the world (french fries), my mother knows exactly where her secret (not really) stash of apple juice is hidden—on her bathroom counter (don’t ask) in her house.


>>Flickr pic by funkomavintage

The Feds VS. Alzheimer’s Disease

Ten other nations have Alzheimer plans. More than half of our states are working on plans. But the federal government has no plan at all.

Taken from an article that appeared in the Huffington Post

By Harry Johns, President and CEO of the Alzheimer’s Association

A new report released this week by the Alzheimer’s Association called “Changing the Trajectory of Alzheimer’s Disease: A National Imperative,” shows just how much this disease also threatens the financial security of Medicare and Medicaid………………..

This year caring for people with Alzheimer’s disease will cost Medicare and Medicaid $122 billion. By mid-century it will cost, in today’s dollars, over $800 billion. When you factor in the costs to others—the out-of-pocket costs to patients and families, the costs to private insurance and HMOs, and the costs of uncompensated care to health care providers–cumulatively over the next 40 years and without taking into account inflation, caring for people with Alzheimer’s disease will cost the American people $20 trillion. That’s enough to pay off the entire U.S. federal debt today and then send a check for $20,000 to every man, woman and child in America with money left over……………………

This is where we are today. Not only has the federal government done little about the existing and unfolding Alzheimer crisis, it has no idea what is going to be done about it. The federal government has no comprehensive plan for how to avoid this disastrous future. It has no plan for adequate strategic research to develop the treatments necessary to save lives and to save the trillions that will be spent through Medicare and Medicaid. It has no plan on how to care for 13.5 million – and as many as 16 million – Americans with the disease by mid-century. It has no plan to have the needed nursing home beds or to expand home- and community-based services.

Read more. Learn more. See how you can help.

A Place for Me in the Kingdom of Heaven

I suspect not.

My time with mom, no matter how brief (or how long), is a time for me to think about my role as her daughter — successes, failures, unmitigated disasters and the like. This past Sunday, as she yelled at the two women in the pew to move because she is Margarita Ritchie and this is HER pew (move bitches — she did not say that, I inserted that for effect) and threw someone’s purse so she could place her purse down — it’s how us Latina Queens mark our territory and secure our seat in overly crowded church — I felt guilty. Not about the two women.

Please, you better move when my mom comes barreling into the house of our Lord and Savior.

Just kidding. Not really. Please move. You will make my life easier, so fucking move. Now. Or I will devein you in front of the manger. No, I jest. OK. Not really. Move please.

I think about if my role in trying to make her life semi-better…. and the words an old Spanish woman uttered many months ago…… God will reward you with a place in heaven.

God will reward me.

ME? A spot in the kingdom of heaven?

Will it be on his left or right-hand side?

And for what, might I ask? For placing my mom in a nursing home on Mother’s Day?

For walking away from her ever single morning as she screamed and cried for me to take her home?

For that one time…………that one strangely lucid moment when she looked at me through her tears and said, YOU DID THIS TO ME. WHY DID YOU DO THIS TO ME?

For telling her no every single time she wants to buy birdseed?

For not being able to clip her toe nails because, in truth, it grosses ME out.

For not moving home sooner?

For not taking her to Banner Alzheimer’s sooner?

For prolonging my dad’s suffering and leaving him alone with her? Willingly (sometimes eagerly) boarding that flight back to New York, knowing he would not be able to cope………….. the act of a good Catholic girl, no doubt.

For making my former love suffer? Nothing like shacking up with a grotesquely, tragic girl

For making all of my friends suffer along with me? Nothing like making them hear the same story over a dozen times (in a single week).

For hating my mother more than loving her?

For sometimes resenting both my parents never cutting the cord?

A confession: Not even I can sever the rotting cord.

I can’t always say no to my dad and yes, I give my mom dollar bills here and there because they make her happy. She loves money. Boundaries? Ha. The curse of the only child.

My most reckless act, going to Vietnam, caused me so much anxiety becuase……… if something actually happened to me……………………………. they wouldn’t be able to cope without me.

He would be destroyed.

She would never understand.

And I fear a place in heaven will keep me by mother’s side FOREVER — because her ticket is booked. She is destined for heaven….. and if she isn’t, then there really is no God.

ETERNITY with my mom.

Still, I can’t help but laugh at the idea of God surrounded by the demented…………… imagine my mom spitting in heaven. Classic. Better get out your wipes God… and read my one blog about your demented Must Haves.

So, my place in heaven. I don’t know what this woman sees. Her vision is narrow because I’m no saint. I’m a realist and very much into self-preservation. I question the very existence of God. If there is a God, I don’t believe he is of the loving/kind variety — I think he or she is sick. Demented.

I have fallen asleep in church — more than once. How many Hail Mary’s is that one worth?

Talk about a view askew.

>>Flickr photo by Darwin Bell

Inside the Bin

343623215_008a03ff09My mom is currently residing at a geriatric psychiatric unit. She is wearing diapers. She is pleading with everyone to get out, and she is running for every open door. What led to her “commitment” (it’s a temporary deal until her meds are properly adjusted) at the psych ward was a series of disturbing events that even I wasn’t prepared for. I continue learning that it can always get worse.

Mom had only been at the home for a little over a week, but during that time she was banging on doors, becoming aggressive with the other residents, breaking her picture frames, and she even tried to make her great escape. Despite being demented, she was clever enough to walk out the secured door with a family who was on their way out after visiting a family member. This little Ecuadorian broad made it out into the lobby before she was apprehended and returned to the confines of her memory care unit. Dammit. I went to her. I went before work and after work. I tried to calm her down. I tried to reason with (yes, I know). I hoped my visits would put her at ease—just knowing that I was there, that I was coming by, that I was near—I hoped would give her some comfort. My efforts did absolutely nothing. She stuck her hand down her diaper. She tried to wash out her butt with water, next she sat on the toilet and showed me her poop. And in a moment of lucidity, she said: “You did this to me. You put me here. Why did you put me here?”

The woman got to me. I thought I was detached enough… in fact, I was scared that I was too detached. I didn’t cry when we placed her. I went home and watered the dirt in my garden. I rarely weep for my mom. When she pleads with me for something, I won’t budge. I won’t cave. I just do the job that has to be done and try to get on with the everyday bullshit of life… you know, the one where I get up, go to work, and pretend to be normal.

And so it goes…

The nurse and owner of the home had wanted to send her to the psych unit in hopes stabilizing her mood… specifically her anxiety and aggression. I knew it had to be done if she was ever going to adjust and settle into her new home. I hated the idea of it. Still, I want her to be as content as she can be… even if it means forgetting about me, my dad, and the life we had—for better or worse—together.

314004290_de2b818096“I am crazy, I am crazy… I wanna drink. I am crazy, I am crazy…” The skinny old lady sitting down singing I am crazy over and over and over and over again had a giant needle inserted into her arm while clear fluid dripped down a tube and into her vein. She wore brown socks.

Susan had no hair, but a generous amount of chin hair. She was a’ight. Wearing bright pink PJ’s and with her blinged out shades on, Susan wheeled herself over to my mom and told her that she loved her. “I love you. I love you.” My mom hugged her. “God bless you. Is that the door?”

When I arrived earlier, I found my mom walking around with a hospital sheet covering her shoulders. She knew who I was. “Mihijta, I am going home with you. OK. Let’s go.” The nurses wanted me to stay to talk to the doctor. Mom isn’t exactly the most coherent person on the planet these days. She mixes up English and Spanish with random words that make no sense. For the most part, I can understand some of her nonsensical language, but other times, I nod my head in agreement—“atiyunoue thedrfiop ewpombnc da’peuld aseftghing?”

I’ve never been inside a looney bin. Seeing my mom there, laughing at nothing. Waving at some invisible being and insisting we hold the door open for this friend of hers was just plain weird. The doctor had a heck of a time with her. When we walked out of the tiny room where he evaluated her, I asked him if he thought she was demented. I don’t know why… sometimes, I don’t know what’s normal anymore. He said she is severely demented. Late stage.

His diagnosis made me feel better. Gave me some strange comfort because it means I did the right thing in placing her at the home and consenting to her going into the bin. I think you just reach a point where you lose your internal compass, like you just don’t know what’s up and down, north or south. You think certain behaviors aren’t that bad. You think, “well, she’s not that far along.” You think, “oh, she’s always been like this.”

She’ll be inside the bin for about a week. I hope we can get her stabilized. I hope she can participate more fully in this final chapter of her life.

My mom is slowly destroying me. I don’t sleep well. I am getting a talking to at work about expectations next week. I am tired. I can’t focus. I can’t think. I moved out her to make things better. I could not fully participate in or heal my relationship with my ex-fiance. My demented mother is taking down the entire ship. How do you care for someone who you don’t even recognize? How do you show love or compassion to this woman who is really a stranger. I vaguely recall what she was like before becoming demented. How do you willingly walk into a psych unit when you know she is draining you of energy? She has the power to destroy me. She gave me life, a life I should appreciate and participate in more fully… yet when I think about death and dying, it doesn’t scare me. Instead, I think peace and quiet.

~Photos taken by Meredith Farmer, http://www.flickr.com/photos/meredithfarmer/

Happy Mother’s Day

n773513765_344555_6699Not really. Not for my family. Not for me. Not for her. Not for my dad. Our Mother’s Day sucked. Instead of brunch with mom at her favorite restaurant or an afternoon at home filled with laughter and love and pink carnations, we took my mom to her new home: A nursing home. Happy Mother’s Day indeed.

Of course, she had no idea it was Mother’s Day. I told her it was Mother’s Day. It just didn’t click in her plaque infested brain.

I knew placing her on that day or any day would be tough. I knew I would have to lie to her. I knew I would probably have to wander away while she was distracted by the staff. I knew she would be upset. I knew she would yell. I knew it would be incredibly difficult. Maybe the hardest day of all of our lives.

What I was not prepared for, and what is branded in my brain is that moment when my father took her hand in his as we walked into the facility—Dave and Margo never held hands; in all my 32 years I cannot recall a single hand-holding moment—followed by that awful second when she finally realized her room was filled with family photos and her favorite dresses. I can’t even begin to describe the look of horror and confusion on her face. “I want to go home now. Let’s go. Where is the fruits?”

Talk about a Come-to-Jesus moment.

She was sitting on her bed when she looked over to the nightstand and saw photographs of me and her sister. “Why are these here? These are mine. That’s my mother and mihijta. Why are they here?” My mom took the photos and wrapped them in the long sleeve shirt she was wearing. Then, she carefully placed her framed photos in her purse. Next, she saw her dresses hanging in the closet. “These are mine. This is my…” She took them out of the closet and walked out the door. My dad sat on the bed. He looked so tired and sad. Defeated. Exhausted. Pale. Drained of life.

After she came back into the room, I was trying to convince her that this is what the doctor wanted. That this would be good for her and that the staff would help her feel better. “Mom, this is only for a little while… just until I come back from New York (a lie) in two weeks. Yes, yes. I’m going to see my ex husband (her word for my ex boyfriend) and get back together (a lie).” She was happy about that story line. It was the only time she smiled. She prays for that particular scenario to come true. Still, despite my efforts, she wasn’t sold on staying. “No. No. No. I have to go home and feed my fruits. No. I can’t stay here. I have no idea how to go home. I have to feed my fruits.”

As I showed her more of the room and the lipstick I bought her (she carefully applied it to her chin and lips), my dad walked away. My turn. When she realized he was gone, “Davo, my Davo, where is my Davo???? DAVO!!” the staff took her down one hallway to look for him and I was taken down another hallway and out of the home.

I went home that afternoon and worked in my half-dead garden. My dad called me to check in. He was shaken. He quickly got off the phone when his voice cracked… he was on the verge of crying. I called him later that day and he sounded a little better, not much. It’s been two days and I haven’t cried.

I can’t feel much of anything. I don’t feel sad. I don’t feel happy. I just am.

I play my part in this world. Right now, I have several roles: daughter, wife, husband, decision-maker, and therapist.

Dementia doesn’t just change your loved one. It changes YOU. But not just the course of your life, it alters your DNA. I am not the person I was four months ago. I am not the person I was six, nine or 12 months ago. And this latest experience has so profoundly changed me. Today, on this fine Tuesday morning, I don’t even recognize myself.

Every cell has been altered.

I am a different person.