Who Am I Now That She’s Gone?


There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.


Don’t Stop Asking About My Mom

I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.

Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.

I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….

My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.

No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.

Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………

I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.

My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.

She inhabits a place somewhere between life and death.

It’s a grotesque place.

By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?

I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!

After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.

I wonder if there is a heaven………………or a hell. I wonder what God will decide.

I wonder if He stopped asking about my mom, too.


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

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

Taking It Out On the Lucky Ones

I don’t tend to get pissed off very often… you know, the kind of pissed-off-rage that suddenly comes over you like a blanket, only to have this urge to hit something (or someone). That feeling or moment came over me last Sunday………………………….

I took my mom to church and although I was prepared — she wore a diaper — we still had an accident. A messy one. She had made it to the toilet, wiped, pulled up her diaper, walked out of the stall……………. and then this this look came over her face…… that look that I’m sure most young kids give when they just realized they pooped their pants — so close, yet so far.

Mom sat back down and when she pulled down her diapers there was a little mess… OK, I’m OK… my “diaper” bag was in our pew so no spare diaper… let’s just clean it up and hope for the best………………… she had a better idea, she put her finger in it. Things spiraled from there in terms of poop-gate. I eventually got her mostly cleaned up….. I think some poop splattered on my foot and a little got stuck in the nail of my thumb. I will say that it took a lot of self control to not vomit……………….. vomiting crossed my mind. I just couldn’t wipe and puke. OK. Wipe, wipe, wipe and let’s roll! Things were cool. We were cool. She was cool. I was cool. We survived mass………………….. amazing.

And I was fine. A little frazzled, but cool………………………………

I texted my boyfriend at some point to tell him about what had happened. He replied with an upside down emoticon……….. I mean, truly, what do you say?

“sucks to b u. LOL…”

Not long after the emoticon text, he texted me to tell me that he had just had lunch with a friend at Paradise and they were hanging out by the pool.

I snapped on the inside. I was pissed. I was angry. I was mad because he was doing what I would like to do……………… have lunch with a friend and hang out. As fast as it came over me, it was gone……. I would never ask or expect my boyfriend to give up his Sundays so he could go to church with us… he does enough for my family……… nor would I ever ask him to stop telling me about his day………… like any good boyfriend, he was just giving me an update……………….. but there was this flash, this flash of anger……….. jealousy. I suppose we all feel that from time to time…….. envy ………………. because we aren’t like other people; we have responsibilities and obligations…………. you show up because that’s just what you do.

Taking your problems out on those closest to you is not uncommon….. some days, life just gets under your skin…….. I am at a point now where this disease is like a phantom limb…. I know the limb is gone, but sometimes I can feel it….. I know the disease is there, it doesn’t always affect me, but every now and then, it just pisses me off…………… that, and it’s too hot out……………… and the person who is at the receiving end of my crankiness is Jon. I know it’s not fair……………… I try to sequester myself when I’m in a funk, but sometimes, my funks can last for a couple of days………………… I just feel sorry for myself. I feel angry. Resentful, bitter and filled with contempt — especially towards those in my own family who I feel judge me and my dad………………… or judge the name of this blog.

Because that’s the real problem……………………… [insert sarcasm].

Jon is kind. He is compassionate and patient. He doesn’t get angry. He doesn’t lash out. He just waits for me to come out of the fog……………………………… to get over it.

Until the next time.

My latest funk has been a bit nasty………………………… just thinking about her, poop, life, its meaning, my purpose, my dad, his health, next steps with my mom….. do we put her in a home next year? When is the time right? What if we face a similar situation like last time? When will this end?

Overthinking is rarely good for the soul.

>>Flickr pic my one of my personal faves…. Meredith Farmer

Coping with Me

My boyfriend says I worry too much.

I haven’t written to much about my new (actually, it’s been over a year) relationship with Jon. Jon is one of the most compassionate and understanding individuals in my life. He is patient and always kind……………………………….. best of all, he’s a gem with my mom. He holds her hand. He talks to her. He hugs her. He does everything a good man should. So what’s wrong with me? Why do I worry so much? Why do I let loneliness and depression consume me? For nearly a month, I’ve been depressed. I can’t always cope with myself the way I feel like I should. I beat myself up over it. I feel tremendous guilt about it……………………………….. worse yet, when I get like this, I can’t really function as a good girlfriend.

Case in point.

Jon got sick. So what did I do? I got angry at him. I was annoyed that he couldn’t do much except lie in bed. So, now I’m left to my own devices plus I feel obligated to care for you. Do you need anything? I asked half-heartedly. NO. Good. I don’t want to care for you. I want you to get better so we can go out and enjoy the sunny day. I hate feeling trapped inside all day. I hate feeling trapped. I’m sick of people being sick. It infuriates me. I came over after spending the day with my mom—he was feeling slightly better. I told him that I was angry at him. He said he knew. Then he said that he’s noticed that anytime he’s sick, I get annoyed.

I never realized I had a habit of this kind of bad behavior. The guilt consumed me. I felt terrible………………………. but I also knew why. I don’t want to have to deal with another sick person. Jon is seven years older than me and sometimes I think, what if something happens to him? I don’t know if I can handle another loved one succumbing to a disease like dementia. What if I become the abusive caregiver that you hear about on the evening news—I disgust myself.

So this weighs on me. Then the loneliness sits heavily on my shoulders. Some days, I just miss my mother. Some days, I just sit on my sofa and I feel absolutely alone. The phone doesn’t ring. No one is texting me. I’m sitting here by myself listening the cars go by outside. I have no siblings or close relatives nearby. No one to say, let’s go have lunch and talk. I get lost in my head and in the stories………….. the what-ifs. The what-if-my mom-weren’t-sick is the big what-if. I would probably be living at home saving money and not stressing about the little things. Like a job that drains me emotionally. Like saving money. Like my fear of getting fired. Like my fear of getting some disease and not having anyone to caregive for me. Like my fear of never having children. If my mom weren’t sick, maybe I could actually freelance and write that book……………………………………….except what would I actually write about? My mom’s disease has brought me to this very place—a place where people have actually heard of My Demented Mom. A place where I have a forum to talk about her, me, our relationship and this disease. Do you realize how wrong this all is? God just laughs. He created the world in six days and bailed on the seventh. And then he left us alone. Frail and vulnerable to fend for ourselves.

Optimists would call me a pessimist. Maybe I am. I do try to appreciate the moments that I have. There are so many wonderful blessings in my life. I have my health, my mind, a job, a loving boyfriend, cats, parents who love me so much and good friends like Natalie, Cheryl and Lindsay.

I just wish I could get over myself and enjoy the moments more instead of reveling in the darkness.

My pity party is boring.

Flickr pic by Loca Luna

A Series… A Struggle… A Black Hole

I don’t know what it is or why, but I am having a terrible time coping with everything that has happened to me and my family. The last couple of years are maybe now finally hitting me… the move, the end of a six-and-half-year relationship, the disease. When I moved to Phoenix in January, I felt a tremendous amount of relief: I had done it. I was here and ready to help my parents get through this—I wanted to be the hero. I wanted to save my dad and give him peace. I wanted to protect my mom and find her the care that she deserved.3509199828_22e65ca353

Nearly six months later, and I feel like a reactive child. I don’t know who I am. I feel insecure about my life-choices. I cannot say what I want or need to make me happy. I am a disappointment. I feel lost and utterly alone. I am ANGRY. My breaking point came Friday night. Nothing was satisfying me. Not 30 Rock, not a book, not the heat, nothing.

The only thing that came naturally to me were my tears… it was the first time in a very long time that I just balled.

I am finding it increasingly difficult to do anything. I don’t want to do anything. I am completely uninspired. Unfortunately, no one will rescue me. I am my own savior. Fuck. I can’t escape myself no matter how much I want to run away.

You know what’s wrong with you, Miss Whoever-you-are? You’re chicken, you’ve got no guts. You’re afraid to stick out your chin and say, “Okay, life’s a fact, people do fall in love, people do belong to each other, because that’s the only chance anybody’s got for real happiness.” You call yourself a free spirit, a “wild thing,” and you’re terrified somebody’s gonna stick you in a cage. Well baby, you’re already in that cage. You built it yourself. And it’s not bounded in the west by Tulip, Texas, or in the east by Somali-land. It’s wherever you go. Because no matter where you run, you just end up running into yourself. ~ Paul Varjack,
Breakfast at Tiffany’s:

I keep running into myself no matter what I do. I need to be alone. I know it’s selfish and terrible, but I can’t do more for her (or anyone else) if I can get my head on straight.

2650112070_4d7f89da05I am tired.

I am angry.



My actions and inability to feel in control makes me want to puke in my mouth.

I hate not feeling in charge of my life.

I am being driven to the brink by a disease whose face resembles my own mom’s.

How do you reconcile that love and that hate?

Who is she?

I don’t remember much of my mom before her disease took over her mind and body. I have been asking friend’s to tell me who she is and what she was like. This is my new series: “Who Is She?”

Below, my girlfriend Chanette from high school (now a mom and wife) shares her memories of my the woman I call mom:

“I will always remember Kathy’s mom as the devoted Catholic who was sweet, soft spoken and cared for others. As teenagers I loved to go over to Kathy’s house because it was so different from the environment that I lived in. I had 5 brothers and sisters and never any “quiet” time. Going over to Kathy’s house was like going to Disneyland for me. I always envied that she was an only child who received her parents undivided attention, had her own room and all the “quiet time” that her little heart desired! Whenever I would be over at Kathy’s house studying or even just hanging out her mom would “stop by” wherever we were to see if we needed anything to drink or eat. Like any teenage daughter Kathy would grumble that we were fine and busy. Kathy’s mom seemed to take no offense to her teen daughter’s response and would come back by 15 minutes later to ask the same thing. I thought, “Wow, you are so lucky to have a mom who dotes on you like that.”

Not saying my mother was any less. The fact was that my mother had five other kids vying for her attention besides me and so no one got the doting that most only children receive. None the less, I was envious of Kathy at the time.

To me, Kathy’s parents were always so different in their personalities. Her father was more of the quiet, reserved type that I was always afraid of disturbing when I was in their home visiting. Whereas her mother just made you feel welcome from the time that you set foot into their home. She was a very open and warm hearted woman who made you feel comfortable. Always asking me how my family was and how school was going showed me how much she cared. My grandmother attends the same church as Kathy’s mother and was on the prayer line with her for several years. When I asked my grandmother what she remembered about Kathy’s mother the first thing she said was “she always had a smile on her face and was friendly to everyone she met.”

As I have grown into an adult I have learned to appreciate my large family for what they are and what they provide me with, a huge support system. Yes, I never had my own room growing up and yes, there was never a quiet moment in our house other than the middle of the night. But if my mother was diagnosed with dementia or any other disease I would not have to deal with it by myself. It saddens me to see Kathy going through this alone. She has no one else other than her father to share the heartache of losing her mother emotionally with, which I know is hard for her. Hopefully one day, Kathy will remember the wonderful woman that her mother once was and all of the good times that she shared with her.”

>>Caged: http://www.flickr.com/photos/36041246@N00/

>>klaus kinski saviour III: http://www.flickr.com/photos/annamalina/

Interview: Sandra Gonzalez, Latino Outreach Specialist

My latest interview is with Sandra Gonzalez, Family Care Consultant, Latino Outreach Specialist—Alzheimer’s Association, Desert Southwest Chapter. Sandra was actually the first person I talked to about my mom’s condition. You see, besides coping with her diagnosis, my mom comes from a very large family in Ecuador and sometimes family dynamics in Hispanic homes can play out differently than in non-Hispanic homes. Hispanics tend to be incredibly family-oriented and may not always be open to seeking outside help, instead expecting the daughter to play the role of caregiver. Although this isn’t the rule, and is not the case with my own family (although, yes, some members of my  family wanted me to move to Phoenix to be closer to my mom, they did not expect me to play full-time caregiver—or at least no one said so to my face; but I should say that my grandma in Minnesota—my non-Hispanic dad’s mom—said the same thing except in a high-pitched Minnesota accent, dontchya know, so, ya, go figure), I wanted to touch on this subject because it’s an incredibly complex subject wrapped in layers of raw emotion—love, guilt, grief, anger, sympathy, sadness, compassion, and resentment to name a few.

Thank you Sandra for your gracious time and constant support.

Although I have two relatives who have been diagnosed with two different types of dementia: Alzheimer’s disease (AD) and AIDS Dementia Complex (ADC), I was drawn to my current position for the opportunity to work with the elderly population. Serving as an educator who increases the awareness of these diseases and a provider of on-going support within the Hispanic community was also a tremendous draw for me. I have a niece with Down’s syndrome. She has about an 80% chance of being diagnosed with AD by the time she reaches 50 years of age. Needless to say, I devour as much information as I can, so I can share it with the families I serve and with my loved ones.

Yes, I believe that Latinos deal with this disease differently than the non-Hispanic community in general. There are several reasons for this. Cultural changes occur based on the level of acculturation. However, some traits seem to remain firm, regardless of how long someone has resided in the states and what their level of acculturation is. Latinos are very rooted in family. The family’s needs as a group are more important than an individual‘s needs. Emphasis is placed on personal relationships. Trust and respect are key elements within the family. Until an outsider has developed a true connection with the family to the point where he/she can be trusted, the outsider’s attempts to educate and support may not be accepted or integrated within the family. Great value is often placed in closeness and togetherness, regardless of the family’s dysfunction. Problems are kept within the family without outside intervention. Studies continue to indicate that Hispanics receive medical care for complaints related to dementia much later rather than early in the disease process. Part of this may be based on strong belief in prayer and destiny. The use of herbal and folk remedies is commonplace. Several families I work with use these remedies to supplement their medical regimens. Faith in God and rituals may support a passive role, rather than an aggressive approach to dealing with the disease. Pain and sickness may be seen as God’s punishment for past sins and so a person may decline pain medication in order to suffer and pay for his/her sins. Some families have expressed great frustration with this behavior. On the one hand, they want to respect their loved one’s wishes and beliefs and on the other hand, they want medical treatment that may help. There is also the stigma of mental health. Mental health is downplayed or not addressed. It stays within the family and is not shared with outsiders. It is also viewed as punishment from God or a curse. Alzheimer’s Disease may be viewed as mental illness or as the normal aging process. Most afflicted family members will tend to depend on the family to make the decisions and assume the responsibility of care. For many, doctors are revered in high esteem and unquestionable trust is placed on them. Although, counsel is easily accepted from the doctor and the religious leader in the community, the family member’s status is usually unsurpassed.

Traditionally, the assistance by the children is expected and does not diminish feelings of self-worth. The daughters, especially, provide care and assistance to the elders. There is usually a large network of kin. Numbers for placement outside of the home are low due to the caregiver role responsibility of the female. The role itself is not viewed as one of a caregiver. Instead, it is viewed as the role of a daughter. This differing view of the role of caregiver can make it challenging for the female family member to accept help that is offered to “caregivers.” I’ve witnessed much inner struggle for some adult daughters caring for their parents with AD. The conflict seems to be impacted by the daughter’s level of acculturation. Acculturation includes changes in education level, socioeconomic status, beliefs, customs, mores and other changes in one’s way of life. For someone who is highly acculturated, the assumed role of caregiver by virtue of one’s gender, may diminish feelings of self-worth. Although, the degree of responsibility placed on the daughter may seem unfair and excessive, it is more likely that the resources at her disposal would be utilized. She would be open to venturing out of the home for assistance, education, resources and support. She may be more inclined to seek guidance and support from support groups, which are a foreign concept to less acculturated Hispanics.


Due to the fact that Latinos believe that the family should care for the afflicted individual, approaching multiple family members for help is critical. Our personal needs, emotions, moods, and attitudes play a big role in how well we listen and how clearly we express ourselves. Preparing for meeting with relatives to solicit support and assistance may be more important than you might imagine. I suggest the following considerations: 1) Get in touch with your true feelings, thoughts and beliefs as they pertain to all aspects of caregiving. 2) Be ready to express yourself as clearly as possible, without any assumption that the other persons have any understanding of what you do, need to do, struggle with, etc. 3) Use only “I” statements and be very careful to avoid any “you” statements. 4) Avoid any inference to blame, victimization, criticism, or anger. 5) Clearly describe the problem. 6) Clearly express what you feel. 7) Then what needs to happen in order to provide the best care for your loved one, reminding them that you all want what’s best.

Close with the consequences of what may happen if your loved one’s behavior continues and you’re unable to get their physical and emotional support. It’s a matter of setting the atmosphere so that the family can really hear you and become engaged in the conversation, which will lead to the cooperation you seek. Often, this is no easy task. But often, it is a challenge worth taking.

For practical matters such as who can do what, try to allow the family the opportunity to volunteer for some of the tasks. Emphasize people’s strengths and suggest that they’d be the best one to do the particular task. Rotating assignments is important in order to prevent burn-out. If, people do not cooperate, then set a time limit for plan B. If plan B involves placement and the relatives oppose this, they need to hear that this could be prevented only if they participate in the care as discussed. Some families will be opposed to any idea or action taken by the primary caregiver. It’s best to offset criticism and judgment by not reacting and instead, reverting to “I” messages.

Some examples are: I believe I am doing the best I can…… I feel saddened by what I just heard……. I’m asking for help….. I love my mother very much…. Keep it positive. If you feel yourself getting emotional to the point where you will not be able to express yourself clearly and/or without negativity, then it’s time to end the meeting. Sometimes, it could help to invite someone from a supportive organization to help mediate the family meeting.

This is an easy one. The top three initial steps I recommend can be done simultaneously.

a) Obtain all necessary Power of Attorneys

b) Contact the Alzheimer’s Association in order to educate one’s self about the disease, available community resources and supports

c) Develop a care plan for your loved one, with the assistance of a Family Care Consultant, who can provide on-going support

Depression rates are highest among women, older people, people with chronic conditions and caregivers. It is treatable. The goal in treating depression is to address it as quickly as possible and keep it from becoming severe or chronic. Some of the standard treatments include various kinds of talk therapy, medication, and learning depression management skills. There are also alternative treatments, which may help address this on an emotional and spiritual level as well. Best results can be obtained when a combination of interventions are used. The most important message is, SEEK HELP. There are many reasons why one may not seek help. Denial can be a powerful coping mechanism, albeit it an ineffective one. Maintaining a strong ally or support network with someone who one can fully trust, is essential to stemming the effects of depression.