Who Am I Now That She’s Gone?

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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.

 

A New Chapter… Life After Death & Dementia

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I don’t really know what to say at this point. The thing is, I still have a lot to say. I want to tell our story. I have to. I need to keep going because, well, what else am I going to do? Sit back quietly and wait for this thing to attack my brain? Um, no. So I’ll just ramble and see what comes out. My mother has been gone more than five month now. She died. From Frontotemporal Degeneration (Pick’s disease). He death certificate says the cause of death was Alzheimer’s Disease, but that’s wrong. I don’t know why I haven’t tried to get that changed. Actually, I do know: I’m too tired right now. I’m also angry. Angry at the doctors who we trusted (because that’s what you’re supposed to do)… those “experts” who were supposed to help my mom, treat her with compassion… but more often than not, they harmed her with their debilitating psychotropic drugs. She was a number. Another patient. And they didn’t really care because they didn’t have to — especially those quacks at the geriatric pysch wards (like the doctor who wanted to treat my mother w/ shock therapy because he thought she was bipolar… at 72). For the most part, and with the exception of a small few, their job is stabilize and discharge — in 30 days or less (if possible).

I’m also relieved. Thankful FTD is no longer gnawing away at her brain; torturing her. By the end, my mom’s once bright smile looked more like she was grimacing in pain — her teeth were yellowed and crooked… she was grinding her teeth. It was heartbreaking, yet impossible to get her to unclench her jaw.

And somedays I’m anxious. What am I going to do now? I HAVE TO TELL HER STORY TO EVERYONE AND ANYONE WHO WILL LISTEN — MARIA SHRIVER, JULIANNE MOORE, SETH ROGEN — LISTEN TO ME!!!!!!!!!!!!!!!! HER LIFE MATTERS AND I WANT THE WORLD TO PAY ATTENTION!!!!!!!!!! HER SUFFERING WAS NOT FOR NOTHING! LISTEN TO ME!

Hmmm. Maybe that’s anger, coupled with desperation.

I’m not really sure how the stages of grief work when it comes to dementia. And frankly, I don’t care to know. I’ve lost my mother twice: once when she was alive. I grieved then. Then again in August. The only difference is now I can’t hold her hand. I’m not sure if this is grief, per se…. I don’t miss her, but I miss visiting her. I miss visiting the other residents. And I miss those little things about her that I lost a long time ago. Like her smile. Even when she was sick, she would smile and call me, “Mijita!”

She had forgotten my name.

I’m not a soul searcher by nature. I know people who feel deeply and to me, it’s an unnecessary indulgence. Yes, I overthink things, but to find deep, profound meaning in her death (or her life), well, what does that even mean, really? Seriously?! I haven’t written a word since my last post announcing her passing. I don’t talk about her very much. And I’ve cried maybe a handful of times since she left me.

More than anything else, I’m tired. Really tired. A little less so these days since I’ve forced myself to read a little more instead of drowning any sadness in episodes of Modern Family or Mob Wives. Baby steps. Project Runway All Stars is on. 

Here’s the problem, truly, when someone is lost to a disease like FTD or any other type of dementia… the burden falls on you, the caregiver; and as that person tumbles down the rabbit hole of dementia, they become utterly and completely helpless. Now it’s up to you to pull up your big girl (or boy) underpants and make some really hard choices. Sometimes you have to choose between “mostly shitty” and “shitty.” And when they finally pass away, you can’t help but think about what you could have done differently (after all, don’t you deserve a happy ending, too?). I sometimes drown in the wouldas, the couldas and the shouldas. And please don’t say, “think about what she was like before she became sick.” You can’t imagine how difficult a task that is to accomplish. She had been sick for a very, very long time… long enough where I have forgotten those good times. But I am trying. I’ve been trying to commune with those old memories in recent weeks. It may sound nuts, but intense physical activity (i.e. spinning) whereby your brain feels like its  on the verge of imploding usually does the trick. Brief moments flash by… poofs of color… and then they’re gone. Though sometimes all it takes is a particular sunrise or a scent. Then, something is triggered.

And it’s a beautiful thing when it happens.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

Five Survival Tips for Caregivers

Caregivers bear the brunt of a lot, which is why, in the process of caring for our loved ones, we need to take care of ourselves, too.

Or so I tell myself every single day.

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Dear Stress, We Should See Other People…

Dear stress...

My Morning With Mom… A Composite

Andres Rueda

My mom isn’t yelling much. This is a new development. It wasn’t long ago that she would howl when I would walk into her room. “Shhhhh. It’s OK. Shhhhh. I’m here. Shhhhh.”  She’d turn her head, look at me with this terribly anguished, almost twisted face, and yell. “Shhhhhhh. I love you. Shhhhhhhh.” I would hug her. She would yell I would hold her hand. She would yell. “Shhhhhhhh. Los pollitos dicen, pio, pio, pio, cuando tienen hambre cuando tienen frio.”

Shit, why can’t I remember the rest of the song?!

“Shhhhhhhhh. Please, no grites. No grites. I’m here. I love you. No grites, por favor.”

“Los pollitos” was a song my mom used to sing to me as a little girl. I try to sing it to her, but, somedays, it just made the yelling worse.

Did she know the song? Was she telling me, “I REMEMBER!!! I AM YOUR MOTHER!!!”

Or, was my singing voice truly that offensive to her sensitive ears?

Eventually, her yelling would subside, and I would sit on the arm of her big, beige pleather sofa and massage the top of her head.

We are living in the Dark Ages when it comes to dementia and dementia care.

This disease is unpredictable and change can happen overnight. Now, when I walk into her room, she’s mostly quiet. Even as I move the sliding glass door along its warped track and the thing grinds, she doesn’t yell. She sometimes doesn’t even look up.

There’s nothing.

She doesn’t know who I am.

My morning with mom. A composite:

I walk over to the small black clock radio, turn on the classical music station, and hide the radio in a cupboard, so the other residents don’t pocket it when they wander in and out of the room. I walk back to my mom and sit on the arm of her chair.

I gently rub her head.

Though her room is quiet, but it doesn’t stay that way. Margie, her roommate starts talking about the kids in the yard (the residents who are walking back and forth); Jim knocks on the glass door and waves. “Hi, Jon,” I say with a smile (I wish I could be as happy as Jon; Jon’s wife once told me that he’s always been so sweet and the disease has made him even more so). Alice slowly creeps into the room. She’s carrying a man’s white sneaker in her hand. “Hi, Alice.” Alice slowly stands no more than a few inches from my face. I think she has something to say, or she wants something, but her words, lost and twisted in her tangled mind, are lost. She walks out of the room, and slowly paces back and forth. She’s young. She can’t be more than 50 years old. She wears diapers and they sag.

James shuffles along outside mom’s room. He’s fast. And very tall. The cold morning air doesn’t seem to bother him. Finally, he stops in front of our room and walks in. I’m happy about this visit.

I love James. He is one of my favorite residents. On good days, he’ll tell me that I’m beautiful. He makes my day every time I see him, especially when he flashes that chipped, toothy grin of his. He makes me smile. 

“Hi, James.”

“Hiiiiiiiiiiiiyyyyyyaaaaaaahhhhhh.”

James sings his words. He sits next to Margie and they start talking………………….. their conversation makes no sense, yet they laugh and carry on.

They speak their own language.

Mom sits and stares out at the sliding glass window. I make the sign of the cross on her forehead. I tell her I have to go to work and I kiss her goodbye.

>>Flickr photo by Andres Rueda

2920 Days and Counting……. Or How Time Contorts Your Soul

When it comes to dementia and demented events, there are very few things that actually disturb me anymore…………….. or, I should say, disturb me for extended periods of time. After all, I’ve been dealing with my mother’s decline for eight years or 2,920 days…………………………….. that’s a long time to get used to the grotesque. And everything about dementia is grotesque. I’ve seen things, heard things, smelled things that no child should ever have to experience……………… and no matter how old you are, those wounds, that trauma that bombards your nervous system, your psyche, never goes away…………………… it may get dull with time, but it never goes away for good.

I remember when my mom was taken to the ER before her month-long stint at the geriatric psych unit, and they had to test her for a UTI by inserting something into her urethra…………… but they couldn’t give her anything for the discomfort and I couldn’t explain what was about to happen because she no longer understood my words. The nurses made me leave the room; I could hear her screaming from down the hallway…………………… I think I almost threw-up, crying, feelings of guilt, regret, contempt, anger, fear consuming me alive……………… and then they were done, she was OK; still, those are the scars that never go away; but you have to endure, you have to get through it, you have to put it behind you, you have to prepare for the next trauma because it’s how you survive……………….. it’s the only way you survive……………… it’s the only way to keep yourself from cracking.

Thankfully (although I never hold my breath…….. glass half-empty, remember?), we’ve found some peace lately……………… her new home has had a calming effect on both of us…….. of course, as her disease progresses, her ability to figure out who I am comes and goes…………………. most days, she knows me or at least knows my face…………………. she smiles, she yells, and, in this case, that’s a good thing because it means she knows I’m someone important in her life………………. I hope she knows I am her daughter. I like to think she does.

But we’ve had a few days where she just stares at me.

I accept the fact that a day will come when she will no longer react to my presence. I accept that and I don’t think it will crush me………………. that’s how this disease works. I can’t change that. I can’t stop it.

I have to accept it and move on. I think I have.

I have prepared myself for that………….. truly.

I had not, however, prepared myself for what happened the other day.

I went to visit my mom one morning and she was especially alert……………. these are great days because they are so infrequent. We walked, sat, “talked,” held hands, hung out……………….. it was finally time for me to leave, so I took her to one of the rooms so she could cool off and watch TV. She walked in, turned around and saw me walking away towards the nurses station……………..

She started to follow me.

This is not an especially unusual event………………. she’s tried to follow me before; tries to catch-up………………. a heartbreaking act in itself……….. but most times, she either goes in another direction or is redirected.

As I walked out of the main building, towards my car, I looked inside………………… bars dividing us………………. she stared at me. I stopped. She stopped. Eyes locked………..eyes-wide open. Was that in my head? Does she see me? Does she know? Has the cloud lifted? Is she thinking, “Where am I? Why am I here? Why is my daughter out there? Why is she leaving me here?”

I got into my car and drove to Starbucks.

Because copious amounts of coffee help me unwind.

>>Photo by Meredith Farmer

Friends With Benefits and Alzheimer’s Disease…

………………………….Can make for a pretty complicated relationship.

Actually, I just saw the comedy Friends With Benefits last night and wanted to share because the movie touches on Alzheimer’s disease…………. Now, most times, I take issue with how news, movies and TV shows portray dementia……………… they typically avoid the grotesque, that is, the disease is wrapped up in a nice pretty bow at the end of the program…… like it’s actually a problem that can be solved.

For me, that’s just plain irritating.

In Friends With Benefits, Justin Timberlake’s father, played by Richard Jenkins, has Alzheimer’s disease and he actually has a challenging behavior: he takes off his pants in public. Part of the storyline (besides the obvious, beneficial, one) involves Dylan (JT) coming to terms with his dad’s diagnosis and behavior……………. Yes, the father has more lucid moments than not, and in those lucid moments, he’s incredibly wise, kind-hearted and ultimately helps his son make the right choice when it comes to love; however, what I liked was that the film (albeit briefly) addressed the toll on young adult children………… Dylan lives in New York, his father lives with his daughter in Los Angeles — there’s an inner conflict; Dylan’s feelings of embarrassment, especially when out in public; Dylan’s heartache at losing another parent (his mother left the family 10 years earlier); Dylan accepting and coming to terms with that which he cannot fix………….. he finally steps into his father’s world and walks around in his shoes.

The movie is out on Netflix and on DVD… it’s a fun flick and it made me laugh, so check it out if you can.

 

Walking Grief… Or Coping With the Act of Dying

Image by Meredith Farmer

I’ve been contemplating this idea of “walking grief” lately…….. mostly, I’m just trying to describe how I feel………….. I’m not always sad, I have sad days, but I’m not sad. On the flipside, I’m not happy either; I have happy moments; moments that make me laugh; but I would not call this phase of my life happy or blissful. So I’ve been playing with the term, “walking grief”…………… because I’m not going through the traditional stages of grief — denial, anger, bargaining, depression, acceptance — but rather a mix of almost all of the above (I’ve never bargained with God; I’ve only threatened to beat him up) and then some. I thought there had to be a better word…………….. something that summed it all up because some days you’re angry. Other days you feel depressed. Some days, you just accept it…………………… coping with a parent who is dying a very slow, grotesque death takes a tremendous emotional and even physical toll.

There is no easy recovery from it. You see things, hear things, smell things…………………. it’s traumatic. I don’t want to sound like a victim here. I’m not. My mom is. I’m just here, going through this experience with her. But I’m not gonna lie………….. it’s been brutal; brutal enough where I tell myself, “Kat, it could be worse…. you could be in a war zone or living in place where you’re stoned to death because you’re a woman…”

There is always something worse.

I had lunch with my friend Lea the other day and she made a wonderful comment to me that just clicked………………………… she said that in our society we don’t embrace the duality……………….. that sometimes we will go through periods of just sadness and that’s OK. That you need those moments to balance out the happy.

As a society, we don’t really talk about the sad, about death…………. we avoid it. We don’t talk about it. We are not allowed to dwell in it. To feel it. To sit with it. We bury it. And then we move on. The problem is, those rules don’t really apply with dementia (or in general if you ask me)…………. every time I visit my mother, any progress I’ve made toward feeling “normal” are swept away. So I’m not going to try. I am going to walk my grief. This is where I’m at. That’s it. I am not going to always see the bright side of things. I don’t want to. I am here. I am feeling a blur of emotion…………………………. and I think that’s probably normal.

I am in walking grief and I kindly ask you to respect that.

Flickr pic by Meredith Farmer

My Demented Mom in the Sacramento Bee… “We don’t have survivors.”

The Sacramento Bee interviewed me for a story about early-onset Alzheimer’s… the piece ran last week. Not sure how much attention or awareness I brought to the issue, but hopefully, my tiny part in this story will get more people thinking… dementia is not an old-person’s disease. People as young as 30 or 40 have been diagnosed with dementia… people with young children, teenagers. This disease does not discriminate. It does not care who you are, what you do, what color you are of if you’re rich or poor…………. can’t help but roll my eyes at the pettiness in our politics, when I know, you know that in 40 or 50 years, the real crisis isn’t going to be whether the Earth was formed 6ooo years ago or 6,000,000,000 years ago… the crisis will be this disease. A disease we are neither prepared for, nor can we afford. Hopefully, people will start to wake up…. listen up world, this disease is coming for you and its merciless.

 

Early-onset Alzheimer’s strikes people in their 50s 

acreamer@sacbee.com

PUBLISHED THURSDAY, AUG. 18, 2011

Starting in his early 50s, Lou Bordisso Jr. knew something was wrong.

One time, he got lost in a Macy’s store in San Francisco and couldn’t find his way out. Another time, expected in a meeting, he rode confused from floor to floor in one Financial District skyscraper, then the one next door.

“I could not for the life of me find the conference room,” said Bordisso. “Then one day, I couldn’t remember how to log in to my computer. That was the beginning.”

At 57, the American Catholic Diocese of California priest should be in the prime of his life – but last year, he was diagnosed with dementia related to Alzheimer’s disease.

There’s good reason we think of Alzheimer’s as a problem of old age: Age is the degenerative brain disease’s only known risk factor. Fully 90 percent of people with Alzheimer’s are 75 and older, experts say, and nearly half of people over 85 have it.

Even so, according to the Alzheimer’s Association, a small sliver of the diagnosed – up to 5 percent – haven’t yet seen their 65th birthdays. That means 200,000 Americans younger than 65, including 19,200 Californians, have the disease.

The early-onset form of Alzheimer’s is little understood. Experts know that for a small number of people whose memory loss begins in their 30s and 40s, genetic factors play a role. But why do other people in their 50s and early 60s get the disease?

Researchers don’t know.

“It’s a less common age to have this disease,” said Judy Filippoff of the Alzheimer’s Association of Northern California. “At 65 and younger, most people don’t expect this diagnosis. They have many responsibilities, and they haven’t slowed down, either physically or mentally.

“And now they have to change their life in ways they didn’t imagine. It can be quite a shock.”

Much too early, people diagnosed with early-onset Alzheimer’s lose their past as well as their future. The disease is both progressive and fatal and has no known cure.

Mike Fisher spent his career with law enforcement in Contra Costa County. At 50, he was Lafayette police chief as well a Sheriff’s Department lieutenant.

Then he was diagnosed with Alzheimer’s.

“I was having a hard time remembering codes,” said Fisher, now 53, who lives in Benicia. “I was having memory problems in my 40s, it seems like. I hit 50, and it’s gotten worse more quickly.”

Many people with early-onset Alzheimer’s still have kids to raise and families to support. Many are helping care for their own aging parents or planning for their own retirements.

Suddenly, the future they mapped out disappears, not only for them but also for their loved ones.

In that sense, Fisher is lucky: He retired from the Contra Costa County Sheriff’s Department with generous pension and medical benefits, and his 18-year-old daughter recently entered community college. Yet he knows his wife of more than two decades will be his caregiver one day.

“You plan as much as you can,” he said. “We go to support groups, and you can see the progression of the disease. It’s kind of scary, to be honest. It can be very sad at times.”

In her blog inspired by her mother’s dementia, 34-year-old Phoenix writer Kathy Ritchie has discussed Alzheimer’s as an ongoing process of grief and loss for family members. Many people coping with their parents’ early-onset disease are still in their 20s, she says, and they feel cheated out of the friendships that develop between parents and their adult children.

“We don’t have survivors,” said Ritchie. “The only people who bear witness to this disease are family members. It wreaks havoc on families. The toll it takes, I can’t even describe it.”

Lou Bordisso Jr.’s diagnosis presents a different kind of role reversal. His father is 97, and though Lou Sr.’s hearing is bad, his mind is still sharp. As Lou Sr. recovers in a rehab facility from a recent illness, his son came home to Sacramento from Vallejo earlier this year to care for him.

Instead, father and son share a caregiver.

Lou Jr. can’t drive any more, because he misjudges distances. His balance is off: Unless he uses a cane, he’s unsteady on his feet. Without help, he forgets how much medication he’s taken.

Since his diagnosis in May 2010, his life has changed enormously, downsized to a quieter, more manageable shape. He was bishop of his diocese for several years, but he took bishop emeritus status instead. The longtime marriage and family therapist also resigned from his secular job in forensic mental health with Contra Costa County.

“I was making mistakes,” he said.

He lives now in the Land Park house where he was raised. Being on familiar territory helps. Never married, he counts on his close-knit extended family for assistance.

Bordisso receives state disability insurance and has applied for early benefits from Social Security, which has added early-onset Alzheimer’s to its expedited access list of “compassionate allowance” conditions.

“I’m used to being a responsible person and doing my part,” said Bordisso. “Being on the receiving end of services is a difficult place to be. I’d like to be a productive member of society. I want to be able to contribute.”

Not long ago, he was named to the Alzheimer’s Association’s early stage advocacy committee, a national advisory board.

And he finds new, unexpected meaning in this unwanted stage of life.

“I can’t recapture the past,” he said. “I don’t remember it. The future, I have no idea what it holds.

“The gift of this disease is to live in the moment. Now is all I have. Literally.”

 

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

Happy Birthday Gaita

My mom turns 74 today.

She has no idea that today’s her birthday.

She doesn’t even know I’m coming over to ring in her big 7-4.

I bought her hot pink nail polish, a pair of earrings and Almond Joy.

Happy Birthday mommy.

Ramblings of a Demented Daughter… Floating Thoughts

I don’t know if I’m a good daughter…. My two cousins and aunt (mom’s sister and her two nephews)  blasted me a few months ago because of the name of the blog… My DEMENTED Mom. The word demented when translated into Spanish is apparently a not very kind word. I can’t say much about that. I didn’t know it was a wretched word in Spanish.

Alas, my mother tongue is English, the blog is in English and according to Merriam-Webster, DEMENTED has two meanings:

1. mad, insane
2. suffering from or exhibiting cognitive dementia

My mother fits both definitions quite nicely. The assault on my use of the word was so incredibly hurtful. They attacked me, the blog and from my point of view, my role as her daughter. I felt like such a horrible person, a rancid daughter, clumsy, baroquely grotesque, wretched and positively cheap……………..I knew it was a strong word……. but the name of my blog was never meant to disparage my mom or her memory………. she is demented. She is sometimes mad. She does suffer from cognitive dementia.

I love my mom.

I miss my mom.

This morning I woke up wishing that I had started wearing a purse when I was younger—when she told me too. Silly, random pre-dawn, pre-caffeinated thought. She used to tell me that I should wear a purse. That a girl my age should wear purse. I hated purses then (love ’em now), but I wish I just did what she wanted me to do. It would have made her happy.

I no longer have any relationship with these individuals—there’s no point. That and I’m stubborn but mostly I don’t think there is a reason to resume relations with people who just don’t get it. Who never will. I don’t know if I’m sad about that…… maybe more disappointed…………. but for me, family goes beyond blood lines. Natalie.

Cheryl.

Lindsay.

Petra.

And of course, my Jon.

New topic.

I talked to Sandra Gonzalez at the Alzheimer’s Associate Desert Southwest Chapter. My mom hates baths. Sandra was sharing some tips for making bath time a little easier…. Play soothing music. Prepare her bath before she gets near the bathroom (apparently the noise may be amplified for those suffering from dementia). My mom screams. She yells, PORQUE ME PONES? PORQUE ME PONES?

That’s dementia for, WHY ARE YOU DOING THIS TO ME? YOU KNOW I HATE WATER. PUT MY CLOTHES BACK ON. I SWEAR TO GOD IF YOU PUT ME IN THE WATER I’M GOING TO SCREAM. YOU’RE REALLY PISSING ME OFF.

We also talked about communication…………. communicating with my mom, understanding her and talking to her in her own language. My mom has less than a handful of phrases that she uses and repeats over and over….. I use the same phrases to talk to her.

Oddly, she understands me. No idea what she thinks I’m saying, but she responds….. in her own demented language. I am in her world. Every time I visit my mom, I step into her world, I engage her……….. I “allow” her to shop lift………. I listen to her. I paint her nails hot pink. I clip her finger and toe nails. I dress her sometimes—something I actually like to do……. granted she ended up with a pair of Converse One Stars, but she likes them and I own the same pair (I like it when we match…………… it’s my thing).

 

Tomorrow, March 25, is my mom’s birthday. She’ll be 73.

 

>>Flickr pic from Mariel B

Alzheimer’s by the Numbers… You Seriously Should Watch This Or Time to Pay the Piper