Letting Go…

On the theme of “Letting Go” from the last post, I’d like to share I’m on a vacation of sorts. I’m back in Austin, TX were I started to create a new life for myself in 2009 after my family lost our business. My mom’s doctor said I would know when to come back home, to support my mom. He was right.

Take a listen to this podcast of a storytelling performance I did at a bar called Martyrs’.  In 2009, I left Chicago ready to start over and in 2010 I was pulled back into the fold of our Alzheimer’s fight.

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White Christmas, like the ones I used to know…

We are ten years into my mom’s diagnosis and I’m learning to “let go of things”.Christmas_table_decor

Like many of you, I’ve mourned not only the person (who is still living), but all our traditions, including Christmas. With a father who passed away in 1973, it was Judy as the matriarch holding all customs in place. Instead of sharing complaints and loss with this post, I’m gonna try to immortalize the special adult Christmas with used to have.   

Judy spoiled us growing up, and I had an idyllic childhood, but being an adult and navigating through life with her on your side was special in a way I can never replicate.  These holiday celebrations highlighted how proud our mom was of us, and embraced us as accomplished adults.  It was special.   Continue reading

I want a new drug…

Let’s talk about some of the good things that are happening for my mom. In thisdeteriorating mind journey, I do think Judy is now on the back end of it. The side where she isn’t so concerned about what is happening to her. She isn’t crying as much and there are more smiles and talking.

Her communication is such that she still serves up the word scramble, but if you speak to her in a kind, gentle tone – after about 10 minutes she’ll return your verbal volleys with a matched and thoughtful enthusiasm.   That makes me happy.

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Baby It’s Cold Outside…

cute-penguin-with-hat-mdIt’s winter now in Chicago, and that means cold temps. My thoughts are with those of you who are trying to put coats, hats, scarves and mittens on dementia-riddled loved ones. As someone who lives in the “right now!”, Judy only understands the climate in the spot where she is standing at that very moment. Trying to bundle her up can be a battle.

My futile pleas for her to put on a coat (as I held it for her) sometimes graduate to me actually physically trying to put the winter coat on her body. I lace her arms through the sleeves of the same pink Columbia coat she has used for years, or attempt to. But my mom isn’t aware of our goal, and her hands routinely miss the sleeves I was hoping to thread them through.  It’s actually a 50/50 chance the coat will go on with no problem.  Continue reading

Fight Night

Autumn Leaves

Amy with my mom Thanksgiving day 2015

Happy thanksgiving. This is the first year of no mom at the table or even in the house.  Amy arranged a visit with her family (kiddies and husband) for mom in the morning on Thanksgiving and sent this pic.

I’m thankful mom is in a good memory care unit, and doesn’t know she isn’t celebrating Thanksgiving with us. She always put on a kick-ass turkey dinner, and her table setting gave Martha Stewart a run for her money.  Lots of warm family memories there.   Continue reading

The Bitch is Back…

I’m sure they dread me coming, and I hate bringing it up – the missing pieces in my mom’s personal care.

I know I’m a control freak – it’s cost me some relationships and I think one job, but I see things a certain way. This Alzheimer’s isn’t going my way.

Judy in 2013 - when she still lived at home. See her stylish quilted jacket from Anne Taylor and a seasonal snowflake sweater underneath from Marshall Field's/Macy's.

Judy in 2013 – when she still lived at home. See her stylish quilted jacket from Anne Taylor and a seasonal snowflake sweater underneath from Marshall Field’s/Macy’s.

My mom is at the point in her dementia where she needs help dressing and being prompted to eat.   Actually, she’s been there for a few years, now we employ caregivers to do it instead of me, my stepdad or Amy taking care of her needs.

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Summer Loving – Had Me a Blast. . .

Me and Judy outside on the patio this summer. 2015

Me and Judy outside on the patio this summer. 2015

Autumn is a melancholy time for me. While I enjoy pumpkin-flavored treats, cozy fleece jackets and a warm mug of anything (booze, broth, coffee or tea- bring it on J ), it’s the turning on the season that reminds me I don’t want to be here. It’s like last call in a bar, you’re enjoying your last drink – but you worry about where you will be later.

For me the next few months pose a challenge. Will I be able to get out of this barren land and enjoy a winter somewhere else. Somewhere warm? I escaped one year to Austin, TX and one year to San Francisco, CA. Continue reading

Go State. Go Judy!

My Facebook is blowing up with my friends daughters and sons, pics of “goodbye” parties for coeds off to their new adventures at college. Moving my mom into her new assisted living home in Arlington Heights with her two tubs of clothes, diapers, some toiletries and photos had that bittersweet feel of a college drop-off.

Just like 25 years ago when my mom drove me the 6-hours to Iowa State to situate me into my dorm at Iowa State. I was so excited, so nervous. But I knew to count on her to help get me settled, and she did from my shower caddie to the perfect bedspread, she bought all my books and a hot pot! I was settled.

When she and Amy were ready to go, I walked them down to the parking lot and hugged them goodbye. Once they were out of sight, I sat down on the curb and cried. Aside from that day, I loved being a Journalism major at Iowa State.

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Love the one You’re with…or left with.

This article about hockey great Stan Mitika and his decline into dementia. Many parallels with this family and ours and possibly yours if you are reading this post. Stan and my mom, Judy, were persons with a dynamic personality, successful – working decades to have a happy retirement, and extremely healthy physical body.

Alzheimer’s isn’t about losing your keys, it is about your mind slowly betraying you for years until you finally don’t recognize yourself, your family or personal boundaries with strangers.

It’s the little things that slowly kill your heart, seeing your mom not be able to walk without tripping over a chair because she walked into it, watching her use a fork and tip it upside down so the food falls all over her, that she doesn’t notice the food missed it’s mark, it hurts when she now sucks her toothbrush like a straw instead of brushing with it, and that you tread a thin line in suggesting how to use the brush because that might get her angry.

It’s a hundred little things like this everyday that make you wonder where your mom went, and who is this toddler that has invaded her body and needs an incredible amount of help to just get up, get dressed, do any personal grooming and eat. They are called ADLs, Activities of Daily Living. My most needs help with most and has been assessed to be given the care you would provide to an 18 month old.

So like the Mitika’s, we are left with the shell of a body that at first glance you think is the same Judy, but upon closer inspection – the lights are out in her eyes, she mumbles and doesn’t think to look directly at you (but always at my chin or right shoulder), and her gate is uncertain. But worst of all – the charming, smart and gregarious mom you had – now lives an existence that is weepy and silent with bursts of anger. She’s usually dirty and confused.

Like Jill Mitika says- “The Stan we knew is gone. Completely gone”. I understand that concept and respect the memory of my mom in the functional body her mind has betrayed.   I mourn what my mom used to be, and try to support the weepy, angry and silent one I’m with.

If you’re reading this – I’d bet you can relate. Watching my mom just try to navigate her life with a brain that has left her deprived of all the ways she can take care of herself is maddening.   After dementia ravishes her brain – Amy and I are left to love what is left of her, and take care of her.

She is a body that used to be our mom. We’re doing our best here. I miss her every day.

Smoking in the Boys Room – errr – Alley?

FullSizeRender (10)Today my sister and I scramble to find a new home for my mom.  We are having troubles with the management at the place she currently resides.  Although they have a specific Memory Care Unit, they are now deeming her unfit to live there.  She’s too much for them to handle.  I’m gonna put a pin in that for now until it is straightened out, but the whole two-week situation has been heartbreaking (like no appetite (for me – not Judy,) sad and low.

To clear my mind I went through old boxes to clear space in my apartment.  I found this photo and it reminded me that there was a time, before Amy and I, when my mom caused a better kind of mischief.

She’s the oldest (and tallest) here in this picture circa the 1950s, Marge and Bill with their three daughters on the steps of St. Henry’s in the Rogers Park neighborhood of Chicago.   On a day like this after church, she would run out with her cousin Phil and smoke cigarettes in the alley pretending to be mature and glamorous.  🙂   Uncle Phil told me once they smoked the long green buds that feel off the catalpa trees and got deathly ill.  Adolescence – it’s not for the faint of heart or sharp of mind.

What a beautiful family.  So glad it’s mine.