September 10, 2011

I can’t believe it has been 10 years…

10 years ago today was the hardest day of my life. I lived and worked in New York City and sent the email below to friends and family on Sept. 12 with my account of the day.

The photo above was taken by my co-worker Nick as we watched the chaos from our office.

If you are interested in my email read it here:

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September 8, 2011

I had dinner with two angels last night

at Sunrise with my mom. Later I had dinner with MY little angels at home.

I go to Sunrise 5 nights a week to help feed my mom. She can sometimes eat on her own but needs constant direction and prodding. Usually I just feed her myself. It’s always a battle but eventually she eats. Normally we sit alone, she usually yells at me and has trouble focusing so sitting at our own table is the best solution. But last night our usual table had been moved so we sat at another empty table. I hoped no one else would join us but a few minutes later two other residents were escorted over. They happened to be two of my favorites, Marlene and Jerry, so I breathed a small sigh of relief. My mom was on a tear though, “You idiot!”, “NO! What are you doing?!” peppered with the usual, “Bu bu bu ba ba” and a quite a few screams and frowns. All this coming from the kindest woman I have ever known. Anyway, I’m used to it. I tried to politely have a conversation with Marlene and Jerry throughout this banter and I can only say it was, well, a challenge at best. They put up with us though, and it was actually nice to have some company at the table.

The great thing about assisted living is that it makes you realize you are not alone. My family and I struggled for years with the stigma and difficulty of dementia. We corrected my mom, we glossed over her outbursts, we laughed off her mistakes. But eventually when things progress you feel so alone, like no one around you can possibly understand unless they spend a good 5 hours with someone that has no idea what is going on around them, someone constantly at odds with her own mind. Sunrise has changed all that. I look around me there and I see wonderful people, struggling with the same problems at my mom. People with their own stories, with rich histories, successes and failures, marriages, kids, and families who love them too. I don’t feel alone anymore.

Marlene told me last night she used to be a handwriting analyst and Jerry a real estate developer (their condition has not progressed as far as my mom’s). They each took turns trying to calm my mom down and reminded her how much I must love her to come everyday to see her. It was refreshing to have a  couple of cheerleaders on my team.

September 4, 2011

I’m channeling my grandmother’s spirit….

I’m learning to sew!

Grandma Rafi was a seamstress, among her many self-described talents, and I have been telling everyone I wanted to learn how to sew FOREVER! Well, I finally sat down and started this summer when I inherited my grandmother’s Pfaff sewing machine and had the guidance of my mother-in-law who was visiting. I’m on my fourth project so far and I must say I’m enjoying every minute of it. Once I sat down and started operating the machine memories flooded back to me…sitting beside my grandmother as she sewed me a dress, trying to stand still as she had me try on half sewn pieces (those pins hurt if you move too quickly!), and my favorite, her tugging at my waist, shoulders, chest, or ahem crotch (Grandma!)…to make the piece fit right….

Anyway I thought I didn’t know how to sew, was considering a class, but once I got my hands on the tools I felt really at ease. Maybe grandma’s Rafi’s spirit is being channeled into my hands through her sewing machine. Maybe its a reminder of simpler times or maybe the beginning of a lifelong hobby…I’ll keep you posted.

August 30, 2011

I’ve been away….

…..from my blog for too long. Here’s why.

My grandmother Rafi passed away in May. That was two months after my grandfather Dick died in March. The day he died my grandmother fell and was hospitalized. Being preoccupied with Dick’s passing we didn’t check in on my grandma that weekend and when the paramedics found her in her front yard she gave them her maiden name. That meant no one knew who she really was and they listed her as homeless at the hospital. By the end of the weekend a neighbor tracked me down and we ran over to the hospital to see her. She was banged up but okay. Long story short she had been going downhill for awhile and this was the beginning of her final moments with life. The next two months she spent going from a nursing home to 24 hour care at home to Sunrise, an assisted living facility we had been considering for my mom. She was there one week and then we got the call. My dad and I rushed over to find her passed away, comfortably, in her sleep. When he and the the man from the crematorium lifted her body she was still warm underneath. The man wore all black and took her away into the night. That was the last time we saw her.

And for my mom, her condition has progressed. She spent a few weeks in Texas with my aunts in June while my dad went to a wedding in Europe and we took the kids to my niece’s graduation in Indiana. Texas was a nightmare. My mom had come down with a UTI which caused her to hallucinate and she was out of her mind. My aunts took her to the hospital and the doctors there claimed her problems were from the anti-psychotics she takes. They released her several days later without having fully cleared up the UTI. My brother flew out to drive her back home because there was no way she could get on a  plane. He and my aunt Dianne made a very long two day journey from Texas to LA with a babbling, weepy, hallucinating woman in tow. I spoke with them several times on their long road trip and it was heartbreaking. When my Dad returned he was shocked to see my mom so out of sorts. He said for 36 hours she was in this crazy state of panic and weeping. Then she fell. She hit her head on the shower curb and passed out. My dad had her rushed to Cedars Sinai. She spent about a week there where they determined she still had the UTI and that is was the main culprit behind the paranoia. They adjusted her meds and monitored her and informed us they believe she has Fronto-Temporal Dementia, not EOAD. The final destination is the same, so the diagnosis doesn’t change much for me. With the danger she posed to herself, my dad felt it was time to move her into assisted living and she has now been at Sunrise for two months. Across the hall from my grandmother’s room. There are many stories at Sunrise so I will stop here and share them soon.

May 14, 2011

I often find myself in ridiculous situations

Photo Courtesy Romleys on flickr

Take yesterday morning. I work five minutes away from my home and it took me 30 minutes to get gas on the way to work yesterday, yes 30 minutes…..

Here’s how it happened…..after finally cajoling the kids back to sleep I snuck out of my house at 7:30 to get to work. On the way I planned to get gas as the corner gas station. I pull up and realize I left my debit card on the counter at home…this place only accepts debit or cash…. cash on hand… 25 cents ( wow that will get me 1/20th of a gallon!).

I absolutely cannot return home and risk waking the kids….what kind of a crazy person would even consider that?! So I start her up and head to another station that I know accepts credit cards. I pull up and then realize they don’t take American Express which is the only card I have activated in my wallet….crap! I frantically search my wallet and find an unactivated Visa card that has been sitting there for oh I don’t know….7 months or so? I feel like I’ve struck gold! So I quickly call to activate it (thank god my cell phone is charged) but am told my phone number doesn’t match their records….oh that’s right we disconnected our home phone about 6 months ago! After several minutes I finally get someone on the line who asks me a host of questions including offering to upgrade this card to a Bank of America American Express, can you believe it? After I politely decline the offer, my card is activated and I am finally able to pump gas. As I swipe the card however, panic runs through me, is this the slippery slope I have tried to avoid with credit cards…..? The reason I don’t use ’em is I don’t want to abuse ’em, know what I mean? The day before this I took my son to the dentist and found out he has 5 cavities that need filling (I promise you we brush his teeth regularly) and that it will take three visits to fill them all at a price tag of $200-$250 for each cavity, OUCH! I’ve been up all night agonizing about how to pay for this (the dentist also does not accept American Express) and the first thought that runs through my mind as I’m pumping the gas is, “Hey, I’ll just charge it to the Visa!”. I knew activating this card was a bad idea…….

30 minutes later I finally arrive at work, only to realize I left some important paperwork at home, also on the counter. At least by this time the kids are probably up!

April 21, 2011

I don’t know where to begin

Photo Courtesy Takgoti on Flickr

What a month I’ve had! I should have been documenting everything as it unfolded in this here blog but instead I hid my head in the sand by keeping ridiculously busy….

In a nutshell since my last post the following insanity happened: My grandfather passed away, my grandmother was hospitalized, released to a nursing home, kicked out of said nursing home within three days, in desperation put on anti-psychotic drugs prescribed for my mother (they didn’t work for mom) that have turned her from a witch into a kitten, all this while my mother entered a verbally angry and combative stage, my father put a deposit down on an assisted living facility because my mother was literally unmanageable, changed his mind and  put her on my grandmother’s anti-psychotic drug that miraculously is helping manage her behavior. And did I mention that while all this was going on I helped put on my son’s preschool fundraiser AND threw him a 4th birthday party with a friend?

If there is one thing I’ve learned in the past month is that I am a firm believer in anti-psychotic drugs. I used to be on the fence about them, but after seeing how the right drug can absolutely tame the most agitated soul so that you can care for them, I’m convinced! Without them my grandmother would be in a psychiatric ward right now and my mother in a facility.

Thank you Haldol and Seroquel!

March 3, 2011

I suffer from inappropriate laughter syndrome

I have a laughter problem.

I don’t know why or how it started but I distinctly remember numerous incidents of uncontrollable laughter throughout my life, like cracking up during mandatory mass in Catholic School, or giggling during a very serious seminar course on architectural theory in college, or snickering during a fellow student’s presentation of sketches in grad school (though I still think I deserve a pass on that one-we were supposed to create sketches using magazine images and I swear this student used porn as his inspiration…).

For those of you who also suffer from this problem, and I know there are others…someone who shall remain nameless, not me BTW, laughed throughout her wedding vows…… I have developed a very simple technique to nip it in the bud. Pinch yourself! Pain stops laughter. I highly recommend a thigh or  upper arm, easy to do without being spotted.

Okay so last week I had a terrible incident of ILS. My father and I were discussing a project in his office while my mom sat beside us. She always gets frustrated when people are talking near her but not including her. At one point she stopped us and started insisting that we deal with “the people”. And boy was she was serious. My dad has developed a very sweet way of dealing with my mom’s nonsensical conversations. He politely listens and emphatically nods his head and says something like, “You are absolutely right.” or “Definitely, thank  you for the suggestions.” It’s a great technique for pacifying my mom and making her feel included. But for whatever reason last week I looked at my dad as he spoke to my mom and I burst out laughing.  I was mortified but as usual couldn’t help myself. These are my parents but still I don’t want to seem like an ingrate! I jumped up out of my seat and scrambled out of there to avoid a scene.

Around the corner I discreetly pinched myself, took a deep breath, then calmly reentered the room. Lucky for me my parents barely noticed. Phew! The last thing I want to do is make anyone feel self-conscious. I mean what kind of a person laughs at a sick man? Apparently me.

February 27, 2011

I cleaned my bathroom with food!

Baking Soda, Apple Cider Vinegar, Lemon Juice.

Have I turned into some crazy earth mama? Yes, but that’s not the main reason I did it, the main reason is I’m cheap! Between working part-time and my husband starting his own business with a friend in 2009 our finances have never been leaner. So I have been learning to make the most out of the least and am always happy to report on great experiments in frugality. Yesterday I cleaned our monstrous shower with the ingredients listed above and it turned out quite well! And when Clara drank bath water last night I’m happy to report I didn’t cringe wondering how much chemical residue she just ingested.

Yippee!

February 25, 2011

I love her smile

Stevie Wonder wrote “Isn’t She Lovely” for his daughter, Aisha, and every time I look at this smile his words echo in my mind.

In between a crazy day of errands Tuesday I found a small slice if time to head out in the backyard with my mom and my daughter and snapped up these shots.

 

 

I love watching Clara interact with my mom because Clara is pure love. She has nothing but smiles and the cutest “c’mon” you have ever heard. Even when my mom is feeling blue, Clara can usually wrangle a smile out of her.  Years ago a therapist told me that I am a “people pleaser” (I’m sure many of you ladies out there have heard that before!) and it’s true. I thought it was something ingrained in me by years of watching my mom do somersaults trying to make everyone happy. But then I watch my daughter and wonder how much “people pleasing’ is in the genes. She is still learning to talk but willingly and excitedly helps me set the table (okay so the plates teeter precariously on the table edge), sweep the floor, and empty the dishwasher. Surely she is acting from pure nature not nurture, right?

Whatever it is, it is unconditional love in its sweetest form.

February 18, 2011

I used to be her favorite

While this blog was created for my mom, there are definitely plenty of other people in my life that warrant writing about, in particular my grandmother Rafi, my father’s mother.

Growing up we never called her grandma, just Rafi. That was probably attributed to my father’s tumultuous upbringing and my grandparent’s cool attitude towards affection. Anyway, I was my grandmother’s favorite, no doubts. Rafi always wanted a daughter but ended up with two sons. My father joked once that the only way his mother would love him was if he got a sex change…..so when her first grandchild was a girl, well, you can guess how much I was doted upon.

In recent years, however Rafi has also suffered with dementia, though unlike my mother, Rafi has what I like to call good old-fashioned senility. Remarkably she still lives on her own with regular visits from a caregiver, my dad, and my brother, and she is content to eat cake, watch the weatherchannel all day and generally be left alone. I used to visit her regularly but once I had children it became harder for me to pop over to her place. And when I did bring my kids to see her they usually started crying the minute she opened the door (she does bear a slight resemblance to a witch). My sporadic visits took their toll on our relationship, and the last time I visited her she screamed at me, “La drona, la drona!” (thief) and threw me out of her house! Two Christmases ago she hit me when I tried to get her to wash her hands, and at this point she has no idea who I am.  I pretend it doesn’t hurt but it does.

In the past few months my grandmother’s aggression has hit a 10 and her caregiver asked if there was anything we could do since she is tired of hiding the breakables when she visits (my grandmother likes to throw pots at people). I volunteered to look into it since I am persona non grata over at her place and want to help her out in some way.  Well, I am happy to report that after a month of discussion with doctors and a local hospice agency we finally have medication in hand; something that will hopefully calm her down and perhaps, if we are lucky, allow us to give her her first bath in two years. I’ll save the bathing discussion for another post….

So this morning my dad, my grandmother’s caregiver, and I will attempt to tame this wild woman, and maybe, just maybe I’ll be her favorite again.