Alzheimer’s Disease… Facts, Figures and What You Can Do

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

A Little Something Called Frontotemporal Dementia

I’ve written nothing about this disorder. I don’t think I’ve ever uttered the words, FRONTOTEMPORAL DEMENTIA. This kind of dementia never really crossed my mind. For so long, we were told that mom probably had mixed dementia—Alzheimer’s disease and Vascular Dementia. I accepted that “diagnosis.” I suppose I evan began to define my mom as that. But as her behaviors became increasingly worse, I did start to wonder if there was something else going on…. even dad thought there was something else going on. We read about Alzheimer’s and VD and in the beginning she fit the mold…….. then she shattered the mold.

Now we have an answer. Frontotemporal Dementia.

While I’m relieved to finally know what exactly is slowly gnawing away at her gray matter, I think this journey would be a lot easier if she actually had Alzheimer’s disease. Maybe not. Everyone is different I suppose.

Below is an interview sent to me by the incredibly amazing people at Banner Alzheimer’s Institute about FTD, which aired on our NPR station here in Phoenix, KJZZ. Hope you’ll take a listen and learn more about this lesser known dementia.

DEMENTIA THAT’S NEITHER ALZHEIMER’S NOR EASY

It’s All About Me And What Could Have Been If It Weren’t For You

I try hard not to dwell on what could have been. It’s an easy enough trap to fall into for someone like me who already suffers from “future living disorder”… I worry about what may happen, what could happen and what I hope happens, instead of focusing on the here and now. There is no cure for this except forcing myself to stay grounded—in one place. Phoenix. With my family. In a 748 square foot studio. With very high ceilings so I don’t feel “trapped.” That’s my other ailment, “trapiditis” or the fear of being stuck. I usually move to remedy that, except this time I can’t (or won’t).

Since I can’t jump ahead into my non-existent future, I’ve been looking back—at what could have been. So what’s with all the time travel? I guess the fact that everyone is having babies. Baby girls (OK, there’s one boy coming sometime next year). Everyone. Seriously. It seems each week, I’m hearing that someone is having a girl and they’re all due around February or March… around my birthday (with the exception of one baby girl due early next year—congrats Nedra!)

I always wanted kids. I dreamed of a large family, probably because I came from a family of three—2 parents and me. I remember thinking at one point that I wanted to be a mom by 26. I’m 33. Totally missed that boat. When I was 25, I thought I had met the one. We talked about having kids. A boy and a girl. Perfect. We even named them, but then that’s what you do when you’re smitten with one another, contemplating the perfect life together. Perfect.

Two years later, things had changed and he no longer wanted children. I convinced myself that I didn’t either. And as my mother’s disease became all too evident, it just seemed like having kids would be too much… even if we were going in that direction, but we weren’t so it served as proof that I had made the right decision. No kids. Besides, how could I care for a baby and help my dad with my mom? What if my mom hugged my baby too hard and killed it? What if my mom lost my baby? What if my mom dropped or even microwaved my baby, like she mircrowaves everything else!?

I can’t even cope with my mom’s disease, how could I possibly deal with a child?

That’s what I tell myself. To this very day. Of course, I’m no longer with the one and so (technically) the baby door is once again open, well cracked open.

Or not. ENTER the present moment (stage left)

I’m 33. Tick tock.

I’m not married.

I can’t afford a baby.

I have no help in the form of family, except my dad who is busy de-raising my mom.

Slightly ajar just got slammed.

So I don’t think about birthing babies and I try to beat it into my subconscious that a child would not be a good idea. I think it’s working. I once even went to a psychic and asked her about children—she said she doesn’t see kids in my future. More evidence. It’s literally not in the cards.

Fast Forward. Present moment. On the laptop. Typing. And I can honestly say, I don’t know if I want a baby anymore. I’m TBD.

Instead, what I think about is what could have been. Maybe I should have ended my relationship when he said he didn’t want kids. Maybe I should have given him an ultimatum—I want kids. It’s me and our two non-existent children or nothing.

Maybe if I had, I would be a parent now. Maybe I would be having my second or third baby—creating a that large family of my dreams in a beautiful house with a large back yard and a partner that teaches our kids how to play some kind of sport or something.

Maybe I would not be sitting here alone on my Macy’s sofa thinking about what could have been and feeling a tremendous sense of anger and frustration at him, at my mother, at myself, at the hand I’ve been dealt.

>>Flickr pic by gabi_menashe

My Demented Mom in Pictures

Demented Tantrums

I can usually tell when mom is a little more hyper than usual…… her energy to me feels scattered, like tiny shiny molecules all jumbled up. This vibe makes me anxious. We arrived. She sat. I read. 5 minutes before Mass started, the hyper-crazy took hold and my mom started to bolt—her two framed pictures of her boyfriend the priest in hand; and yes, they are the exact same pictures—I dropped my book and grabbed her and pulled her down to her seat.

She fought back.

I struggled to keep her in her seat.

She started to whine……………………….. “Dejame! Dejame. Porque no me dejas!?”

I started to plead. “Gaita, por favor. POR FAVOR SIENTASE!”

I tried threats…………………………………. Sit down or we are leaving. Like I could drag her out without causing my 73-year-old mother to suffer a complete meltdown.

In seconds, she was up again and I placed my arms around her and pulled her down to her seat. The women in our pew tried to distract her. “Margarita, mira esto! Margarita!” She would have none of that. To keep mighty mom in her seat, I flung my legs over her lap and tried to get her to focus on me. This went on for about 3 minutes.

The priest finally came down the aisle and again tried to jump into the aisle to invite him over to dinner—AGAIN!

He came over, held her hand and she started yelling. This yelling is a new behavior. I don’t think it’s her intention to scream at people………………… dad, says he’s noticed this new behavior as well. The yelling. It’s difficult. She yells out people’s names in the middle of mass, “Hola, mi Connie! Hola, mi Maria!” During Communion, she yells at the priest to come to dinner………………………………………. “Mi esposo la fruta mi esposo y yo queremos que tu la fruta en la FRUTA CON NOSOTROS!” She holds up the line for a good minute before taking in the Body of Christ.

AMEN MOM! AMEN! Move along.

“AMEN!!!!!”

Finally.

Physically restraining your own mother takes a toll, I think, on you spirit. I mean, seriously? Who does that? Maybe in some movie where the mother lost her beloved child and she’s about to attack the person who did it, then you hold her back. But in my case, it’s another cut on my soul. Not a stab, but a slice. Another slice. I have about 1,000 of them. Slice. Scab. Slice. Scab. Slice. Scab.

After the whole Communion situation, I sat in our pew (and like a good Catholic mother, I made her get on her knees for the confessing of sins part, because she totally gets it—not at all. Bad habits die very hard) and started to cry.

I don’t cry very often over this mess. Not anymore. So when I do, it’s a result of emotion overload. I’m angry, embarrassed, hurt, resentful, tired and frustrated that I can’t make her behave like a normal human being.

I can’t control her.

She will not listen to me. Instead, she laughs at me.

My church friend Teresa came over and sat next to me. She held my hand. My mom, no longer able to sympathize, empathize or any-thize, was just looking around for her friends and rehearsing what she was going to say to the priest AGAIN.

After this, we went to Target. I bought her hotpink nail polish, went home and painted her nails.

>>Flick pick by Alice

My Demented Mom On The Phone

I debated whether or not to do this, but I also think its important to hear her…… she is mother, a wife, an aunt, a friend, a daughter, a teacher, a sister, a daughter-in-law, a sister-in-law and more. This disease may rob of her of her memories and her self, but she’s a human being who deserves to be loved, to be heard and most importantly, RESPECTED. I just wanted share a piece of her. Her voice.

In a nutshell, she’s asking me why I didn’t make it on Sunday and if she’s talking to her daughter. She goes on to ask me to come over to take her to church (fruita) because wasn’t able to attend.

My Demented Mom on the phone

She Didn’t Recognize Me

Mom and dad popped by the house the other day to pick me up and take me to the airport. Nothing unusual. Opened the door, the ‘rents walked in, hugged dad and prepared for my mom’s usual, OVER THE TOP, HUGS AND KISSES… “I luf you! I luf you! You’re my husband! You came out of ME!” But nothing. She said hello and just looked around.

She had no idea where she was or who I was! In fact, she seemed confused.

It was surreal. I wasn’t hurt or angry. I was actually glad she was calm while I gave dad the tour of my house and showed him where the cat food was stashed.

About 20 minutes later as we got into the care she asked me if I was her daughter.

She looked at my dad, “Is that our daughter?”

Yes Margo.

“Are you our daughter?”

Yes mom.

“Mijita! OH MIJITA!! MIJITA MIJITA!”

I’m not especially surprised that she didn’t recognize me. It’s part of the disease. It’s more trippy than anything, and I can’t change how this disease progresses, nor can I take it personally. You know, I think I’m so used to this life, this shattered life—that is the nature of her disease—that nothing really phases me.

Nothing really hurts anymore.

From God to Target With Love

I nearly lost it on Sunday. Nearly lost what remaining droplets of patience I had. Mom was especially hyper the other day, and, of course, incredibly eager to talk to her boyfriend: The Priest…………. over and over and over again about the same topic: coming over to dinner. My husband wants you to eat the fruit with us. Tonight! You come tonight!!!

Before Mass. As he’s approaching the alter. During Communion. As he’s exiting the alter. Outside.

Damn you short term memory!

However, what caused me to very nearly step off the ledge was the fact that the church decided to celebrate the priest’s 15 years commitment to the most holy universal church with carrot cake. That’s nice. What a surprise! And what a surprise when a gaggle of little children ran up to the front of the church to hug him.

In theory, this would be positively adorable. In theory. The problem is, mom loves the little ones and she loves nothing more than to tell them that she loves them. Thing is, instead of saying, “I luf you,” she grabs their little—still growing and therefore delicate—hands and yells, “I LUF YOU VERY MUCH. I LUF YOU”.

This can be scary if you’re only 3 or 4 or 5 years old. This is scary when you’re 33………….. mostly because I think of the freaked out parent who is going to one day come over and say something to her and to me about grabbing their little, still developing child (she has a firm grasp)—thankfully, the Hispanic community is too polite to say anything overtly rude. Mostly, they just stare and the younger ones just laugh. UGH!

So I was getting irritated. And irritation, when it comes to my beloved mother, leads to me utilize reason as a means to communicate with her. I was going all out LOGIC with her. I know, absolutely stupid and a complete emotional drain, which then frustrates me, angers me and makes me want to cry. Thing is, I can’t help it. I want her to understand that there are consequences to her actions.

Explain to her the ramifications of her actions.

Ask her to NOT grab those sweet, FRAGILE, little hands, which could break if you squeeze too hard!

PLUS, everyone STARES AT ME MOM! AT ME. LIKE I’M THE MEAN DAUGHTER!

This typically results in her a) laughing at me or b) telling me that no, they like it and she’s going to do it anyway, so fuck off (added for effect, it’s not in her limited vocabulary. She would probably say, FRUIT OFF).

After a few lame attempts to restrain her. Several LONG STARES from members of the church, we left and headed to Target to decompress.

Not before rewarding her bad behavior with nachos…………… 4 months ago, she used to love the fake cheese. Last Sunday she hated it. Weird.

Target. Stay on Target.

I love you Target.

She knows we go to Target for several reasons: to walk around/to spit on the floor/to spend some quality time together/to give dad some extra alone time.

The one thing I will say is that my patience meter typically refills after a few moments………………………….. or once I walk through the hallowed doors of Target.

Target is also one of those places where we’ve had some sweet, tender moments (believe it or not………. you buy toilet paper there; I bond with mom) and last Sunday was one of them.

I often don’t get “mom” moments. So when I do, I find them to be incredibly tender and sweet—it’s not typical, and maybe more mother/daughter in the sense that I’m the mother and she’s the little daughter offering fashion advice………………………… I was trying on a dress and she was actually doing a very good job of helping me decide whether to buy it. I tried on like 3 different garments and she was standing there telling me in her own way that it doesn’t look right or that it’s a good fit. She was very helpful and just a great shopping companion that day.

Funny thing is, my mom used to be a shopaholic. The woman LOVED to shop. She would buy clothes just because they were on sale! Would she wear them. No. But she bought them, because by God, it was on SALE! She still has two closets dedicated to her clothes……………… but dementia has taken away that joy. She hates trying on clothes and she only wears a few outfits, mostly she likes to wear this one particular Kelly Green dress that she bought for my cousin Lisa’s wedding in 1996.

It’s her favorite dress. Like in the universe.

>>Flickr pic by mergrje

You May Not Support Healthcare…

BUT……….. here’s how it might make your life a little easier……..

Elements in the final healthcare reform legislation would begin to address these issues:

  • Alzheimer families will be helped by the creation of a national voluntary insurance program, known as the CLASS Act, which provides benefits for long-term care services and support, such as respite care, home care aides and accessible transportation. This new insurance program will help individuals with Alzheimer’s disease to remain as independent as possible within their homes and communities for as long as they can and is a great first step in addressing long-term care issues and in assisting families.
  • Creating a new demonstration project, known as the Innovation Center, to examine ways to promote care coordination in the Medicare program, including for individuals with Alzheimer’s and other dementias. “Care coordination is a process for ensuring effective communication among medical and community care providers and connecting an individual and their family with the services they need,” Egge said. “The new Innovation Center will pilot new programs and identify which programs work best for individuals with dementia.”
  • Establishing a Medicare pilot program to provide transitional care to seniors at a high risk, including those with cognitive impairment, of re-entering a hospital. “Cognitive impairment due to Alzheimer’s and other causes increases the complexity of care transitions and post-acute care, resulting in increased risk for medication errors and hospital readmissions,” said Egge. “Alzheimer families need assistance with planning and managing discharge and post-acute care, including arranging and monitoring in-home medical treatment and supportive services.”

OK, I KINDA WANNA READ MORE…

Your Demented Must-Haves…

The key to coping with a demented parent is to make life as easy as possible……. for YOU. By doing this, you’ll  make their life easier, and maybe avoid those occasional moments of humiliation in say Target or the Catholic Church — of course, they don’t seem to be too bothered by such moments, at least my demented mom doesn’t — in fact, she usually laughs (Symptoms: laughing inappropriately? Check)……. Of course, if this is new for you, trust me….. after a while, you won’t be bothered by most behaviors either.

OK, so here’s what I’ve gots to share — FYI, I’m much more savvy now that I live in PHX and spend more time with my mom — that it is incredibly important (I CANNOT STRESS THIS ENOUGH) to have a bag of supplies. For instance today, we were in church and all was going fairly well — a few tissue moments — but during the Our Father she had a coughing fit. Well, you know my mom spits and spit she did, but I was ready and caught it in my handy paper towel…. I am also very good at anticipating and, ultimately, catching spit-up. So here’s what you must always carry in your bag or glove compartment:

1. Antibacterial hand wipes or baby wipes (I’ve cleaned floors with them)

2. hand sanitizer like Purrell

3. Dry napkins or tissue

4. pen and paper (she remembers random things and forgets random things…)

I am actually going to start carrying mini snacks too or a juice box… my attempt to distract her when she’s obsessing over something like our priest or if she has to take a pill….

NOTE: Avoid gum. My mom swallows the stuff.

Any other tips? PLEASE SHARE!!

Get Me Out of the Sarlacc Pit……..NOW!

It’s Sunday. I hate Sundays. Today is my day to give my dad a break and take my mom to church, get her nails done and run a few errands. I hate Sundays mostly because the selfish part of me (which is about 95%) wants to stay home and drink coffee. Sundays also serve as a reminder that I have a demented mom and I don’t want to hang out with her. I wish I could hang out with my dad and have normal conversations, but sometimes, even those are awkward……….. not typical talks. Sundays also remind me that I’m alone. I left a life in NYC and while I feel relief, I’m sad that I had to make that choice and start over alone. I’m angry too. Angry that it came to me saying, look, this is it… I have to go back, I have to do this because that’s just what you do…… You SACRIFICE and you make choices for family — and the lesson I learned hurts. It’s crushing some days. I wish I could be a hedonist and say, ‘not my problem.’

Alas, I’m not.

This choice has nothing to do with being noble. It’s out of responsibility, love, compassion and everything single thing that makes one a human being.

It’s also about walking in someone else’s shoes. And hell, what would YOU want if the roles were reversed?

You know, I think it’s OK to feel this way. I think it’s OK to feel lonely……..

Yes, I have my parents, my dad, my mom……… both adore me and for that —————— phone call! It’s HER! What time are you coming over? When is Father Andres coming over for fruit (dementia for dinner)? Come eat fruit (dementia speak for lunch). Did you get the dinner (dementia for money)? Can you give me some dinner? —————— where was I? For that I am lucky and grateful. Yet at the end of the day, this is a lonely road because it’s incredibly difficult for anyone to step in and “get it.” For that matter, who would want to “get it?” Jesus, I don’t want to “get it.”

In fact, most days, I don’t want to play anymore! I WANT OUT OF THE SANDBOX!

Dementia sucks. Behaviors, like my all time favorite: spitting, SUCK. Yes, I know I have to patient. I am patient. I will be the most incredibly patient parent after this experience. How could I not be? Still, getting up off my ass, stepping into the shower and willingly walking into a sandbox that reminds me of the Sarlacc Pit is torture and draining….. Christ, all I want is a Sunday with coffee!!

Of course, I will continue to play mostly nice. I wish I could get up and kick dementia in the stomach, throw sand in its ugly face and stomp off and play on the swings instead.

But I won’t.

I want out. But for now, family and loyalty and all that jazz trumps………………..

I love my mom and I hate her too.