Archive for ‘Life as an EOAD Caregiver’

October 17, 2011

I hear the Sunrise symphony…..

People with dementia have limited, if any, filters. They say what’s on their mind and don’t give a hoot about manners. It can be shocking and hilarious at the same time to watch this in action especially at the dinnertime “symphony” at Sunrise.

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October 5, 2011

I lost my daughter at Sunrise

Yesterday I went to feed my mom dinner at her assisted living facility. Clara always asks to come with me and the staff and residents over there love her so I take her as much as I can. Well, last night we were all set up in the dining room, I had my mom at her table along with assorted puzzles and toys for Clara nearby. These occupied Clara’s attention for about 10 minutes before the two year old crazies took over and she wanted to run around. Usually I just let her. It’s a lock-down facility and there is no way she can get out. Typically she’ll run around the halls and come right back to us. After a particularly difficult couple of minutes with my mom yelling at me while I tried to feed her I noticed I could no longer hear Miss Clara’s footsteps. I got up and walked into the hall.

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September 16, 2011

I brush teeth

I was going to write a post sometime back titled “I wipe butts” but I brush teeth is so much nicer dontcha think?

And when I write this I’m not talking about my own, teeth that is, although I do brush those too. No, I mean every day I pry my little ones mouths open to insert the tooth brush for a minute of screaming. Cleaning “the sugar bugs” out is a good ploy. Then later in the evening I brush my mom’s teeth. She is thankfully less resistant to brushing but never manages to rinse properly. She usually swallows the water. Oh well, perfect teeth for her are the least of my goals.

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.

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 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 9, 2011

I Left My Purse At Brats Brothers

Yesterday was a challenge.

One of the duties I have at my son’s preschool is to go out into the community and solicit donations for the annual fundraiser. Last Friday I called Brats Brothers about a possible donation and the owner told me to stop  in on Tuesday afternoon to talk more. Tuesdays my mom is with me.

So it’s about time to go over to Brats Brothers and I have the following caregiver dilemma: my dad is at a meeting, my brother can’t come over, and my husband is working on two deadlines…..do I take my mom and the kids and make the meeting, or go another time and risk looking flaky? My mom had been off and on crazy and emotional all day, so I hand her a small glass of wine, get the kids dressed, and decide to make the meeting.

We head over to Brats Brothers and the owner is amazing, not only is he willing to donate to our event, he whips us up a sample platter, AND it turns out he used to be an architect! So of course we hit it off, chatting about the state of the architectural business; meanwhile my kids are puttering around the restaurant and my mom is, well, at first she was smiling but after a couple minutes of me gabbing with the owner she is now scowling, at him!  I whisper to him that she has dementia and he smiles and tells me his father is also suffering with it.

Skip ahead a few minutes, we are waiting for the sample platter and my mom is now pacing the restaurant angrily. Between watching the kids and calming her down, I try to hold a conversation with the staff members so we don’t look like a freak show. At one point I take her outside to try to reason with her but she is on the verge of tears. Finally I go inside and ask if we can take the sample to go, and the owner understandingly says, “No problem!”. A minute later we hightail it out of there and I avoid a major mom meltdown in public.

We head back to the house and my dad has just come to pick my mom up, my husband is taking out the trash and asks me for something out of my purse…my purse, my purse it’s in the car, right? Uh, no…..it’s nowhere to be found so it must be, OMG at Brats Brothers! Haven’t I caused enough commotion there for one day? My son and I head back over there where my purse is waiting. Once again I explain about my mom and once again the owners are nice and understanding.

The point of this story? Even though things are stressful, most people have a lot of empathy (or sympathy) for our situation. That goes for strangers, co-workers, fellow families at my son’s school. I don’t know if secretly people are ready to run away from us but outwardly their show of support and understanding is amazingly comforting. Thank you!

BTW the brats were amazing!

February 3, 2011

I Yelled At My Mom Today

My mom was on a rampage today, restless, angry, impatient, mean to everyone around her. I usually try to humor her when she gets like this but even humor failed to bring a  smile to her face. My wonderful Aunt Nancy has been in town caring for my mom for about 10 days and was verbally abused pretty much the whole time. If you didn’t know my mom had EOAD you would throw her out of your house!

Anyway, I usually try to keep it together with her but when she was repeatedly mean to my three year old son I snapped. “Don’t you talk to my son like that! I draw the line there!” I hissed.  And she hushed up, for a few minutes anyway…..I felt very bad because it’s not her fault her mind is a mess and she is confused and angry. I don’t blame her. But my little boy doesn’t understand and the last thing I want is for him to grow up to remember his “Lita” as a mean old lady. After all this is the woman who never uttered a bad word about anybody, EVER when I was growing up. I mean it.

Dementia sucks.