Full Circle Or 73 going on 3

Something that I think everyone who has a parent with dementia can relate to is this idea of life coming full circle. Our parents are growing down, they’re regressing (my mom is 73 going on 3… I believe we are in the terrible demented 2s still) and it’s one of the more frustrating facets of any dementia: The role reversal.

I talk about this theme a lot in the blog because I believe this is one of those really tough things every adult child faces—and it truly, truly sucks.

With my mom, this has been especially true, I think because of her kind of dementia—the frontotemporal stuff eats away at the part of your brain that keeps you from behaving exactly like a tot. In public places. Throwing tantrums. Or, in our case, spitting and stealing stuff……………….. my mom has no concept of right or wrong, good or bad, or sometimes, yes or no. She does what she wants, like a child, but doesn’t have the ability to learn or retain important, very useful, information—like, for instance, if you drink soap (as she does), it does not taste good so you skip the soap. Mom still drinks the soap. Her behaviors and plain inability to retain new information has forced us to take measures that are usually reserved for mini-humans.

We baby proof………………………………….

Dad has taken to locking the fridge with a giant chain and lock (remember, she’s stronger than me so we can’t just use plastic locks like you would for a 2 year old). Certain electrical outlets have a reset button so they don’t generate a current………… kitchen equipment has been put away (mom took the grease from the fry daddy and poured it around the pool to “feed her birds”), and I’ve taken to shopping in the baby aisle for bath soap, toothpaste, wipes and other kid-friendly goods because it just makes sense……………………………… she hates water, let’s throw in Dora the Explorer bubble soap and see if that helps. She’s not into washing her hands so let’s get Johnson & Johnson wipes that disinfect and smell nice. I have a theory that she’s not really brushing her teeth, so lets get her something that tastes good AND fights cavities.

When the parent becomes the child and the child the parent…………… well, it has a way of messing you up. You feel abandoned in a way, because no matter how old you are, sometimes you just want your parent. This disease has robbed me of my mom. I’ll probably never get over that. I can’t imagine how, really………………….. even when she’s gone and it’s behind us; the idea that I lost my mom starting in my late 20s is an emotional dagger……………………………………. I sometimes wonder if my mom would have helped steer me in other, maybe better directions, if she were mentally here for me. I wonder how our relationship would have evolved as I got older….. from mother/daughter to a beautiful friendship between adults. I have no idea.

What I do know is that I have a profound appreciation for tear-free shampoo.

Flickr pic from StarMama

A New Diagnosis

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

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

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

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

Daddy-Daughter Dance at the Shooting Range…

My dad used to call me his “princess” or “buckaroo.” Not anymore. My dad was always my favorite parent. He wasn’t exactly the disciplinarian, unless I did something really bad like crash my car—5 times (only 3 accidents were technically my fault)—and he would always indulge me whenever he could. The perks of being an only child and his daughter, I suppose.

But with mom being sick, our relationship has changed…. he’s a husband and parent and I’m a daughter and parent of a wife and mother. Strange. We don’t always agree on her caregiving…. he’s still my dad and her husband, so while our arguments aren’t exactly arguments, they’re tifts, mini squabbles that end fast, never escalating, just disagreements—I don’t know what they are really….. some jacked-up daddy-daughter dance, I think we’re both trying to do what’s best for our demented loved one without pissing off the other.

Clumsily treading some twisted dance floor, never looking at each other directly in the eye, that would be awkward… an uneven parquet floor, desperately avoiding each other’s toes. It’s often rather gauche. And sometimes subtle moves are made to steer the other partner in another direction. Trip. Ouch. My toe.

I miss my dad. I don’t have any other family in Phoenix and I often feel very alone. It’s just the two of us—and sometimes, I do wish my mother’s disease would take her away, so I, selfishly, could have my daddy back….. dinners, lunch, drinks… political conversations, movies…. maybe even holidays with friends… These days, holidays aren’t my thing—I like them, but I’m not into them because for me there’s no point…. instead they’re just a tragically grotesque reminder of what IS and what will never BE.

“We should visit your parents again, maybe lunch or take your dad shooting…”

That’s HIM. The man I’ve been dating now for almost four months. I couldn’t believe it—he actually wants to spend time with my family. That’s weird. He wants to hang out with my dad. He is willing to sit through lunch while my mom forces him to eat carmel popcorn (she shoveled a handful onto his plate the first time he came over, he graciously accepted). Who is this dude? This CANNOT be real or HE cannot be human. But he is. He accepts me and my family for who we are. He knows that I miss my dad and that I wish I could have my Kat and dad time…. without my mom.

So this Saturday, the three of us are going out shooting and then bringing back Chinese food for lunch with the man and the fam.

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

A New Home

I moved home. Well, I moved into my own little place just 15 minutes from my parent’s house.

My first few days back were weird and the reality of my decision finally set in. I was sad. I cried. This life was never part of my plan.

When I was 15 or 16, I used to think that by the time I turned 30, my life would be glamorous, I would be tremendously successful, and the meaning of life would be clear… I’m almost 32. I have no job. I am alone. I am starting over. I have no idea why this is happening to me or to my family. I think a lot about karma these days: Why did I choose to be born to this demented woman? Am I being punished by some higher force? Is there some lesson I’m supposed to take with me to my next life? Am I in Hell? Is this human experience simply meant to teach me the value of patience?

So not part of the plan. At least there’s a Starbucks in Hell.

Of course, this move really is a chance to mend my family; to spend time with my mom before she gets even worse; and to hopefully become a better, more patient and loving human being

What has happened these past three or four days, and what proves this was a good move, is that I can spend small or large increments of time with my parents and when I’m cooked, I can go home and decompress. Very important.

I said in an earlier post that if my gut had said stay in New York City, I would have stayed, but my insides screamed at me to move back to Phoenix. Despite the hurt I’ve felt these past few weeks and the pain and disappointment I may have caused others, I know this move was the right choice for me.