Who Am I Now That She’s Gone?


There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.


Date My Dad or Bless the Caregiver…

I’ve been on this road since I was 28 or so. I think. I’m 34 now. I can’t really imagine my life without this disease. Even though my mother is the one who’s sick, her dementia affects me too. Although I’m at a point now where I don’t miss what could have been (rather, it doesn’t haunt me like it used to)—I don’t fantasize about having girly-talk-filled-lunches with my mom or meeting up for pedicures anymore—these days, I worry a lot about my dad.

My dad is a full-time caregiver. He retired at 63 to take on this not-so-jazzy-job………………. he couldn’t take the stress of not know what would happen when he we went to work each day. These days, he spends his days tending to his toddler-wife. He bathes her, he feeds her, he makes sure she doesn’t drink the soap (or any other kind of liquid cleaner), he takes her for walks, he takes her to the doctor, he does her laundry and he cleans up after her………………………………………… he does whatever she needs.

He rarely complains.

Sure, he has his moments…………….. I can tell when he’s sad or angry and it breaks my heart. I can only do so much for him. But I can’t help but wish he had some companionship. Sorry, a demented mother who uses a handful of repetitive phrases to communicate does not count. Somedays, I wish my dad could meet someone nice and pretty too………………………….. because, I think someone nice and pretty would be lovely. Maybe. I hope. Someone who understands and supports his situation.

My mom is at a point now where she cannot play wife.

My dad has no one to talk to. I’m his only friend I think—but I’m also his daughter.

Mainstream dementia or what you see on TV isn’t what you see in real life.

I hate news stories about Alzheimer’s or dementia. They often feel sugar-coated. You hear the afflicted man or woman—still incredibly lucid—talking about how they are savoring every remaining moment, every precious memory. Then, they look into their partner’s eyes—they both fight back the tears.

It’s tragic, but that’s not always the reality.

My mother and father never held hands as they looked lovingly into each other’s eyes when as the doctor informed them that she had Alzheimer’s in 2006 (a misdiagnosis as it turns out…………………).

In fact, my mother never seemed to comprehend that she had any kind of brain disorder. She just drifted away year after year—her essence lost in the fog.

The years leading up to the present moment were filled with every emotion……………………… denial, anger, sadness, rage, frustration, anger, anger, resentment, jealousy, despair, desperation, hate, contempt, denial……………………..

There was no tender hand-holding.

The grotesque reality is avoided: the behaviors, the emotional toll on family, the loneliness……………………. the deep, dark pit that often traps caregivers like my dad.

So here’s the question????????????????????????????? Is it really fair for my dad to go on without a new partner because his wife is still alive? And when is it OK for the caregiver to let go of the past and live?

Caring for a demented loved one is a prison sentence. You are bound to your loved on because it is the right thing to do…………………….as humans, we must care for our family. We must love them and respect them. We must do what we can do to make their life as comfortable as possible……………………….. and as a society, we demand it. You are noble if you remain ever faithful to your demented mate. You’re loyal. You’re remarkable. You’re heroic. Society smiles upon you. We give you our seal of approval because you are doing what no one really wants to do………………………………………………

But what if your loved one’s mind—that part of our grey matter that makes us who we are, gives us our personality, our energy, our vibrancy, that “thing” that makes you you—has already crossed over?

Can you be a caregiver, a good caregiver and date?

I want my dad to date. There, I said it. I want my dad to be happy. I want him to meet someone who treats my mother with love and respect. I want someone who understands that this is not a conventional or convenient relationship. Yes, my dad comes with baggage, a demented and dying wife and a 34-year-old, but doesn’t he deserve some kind of a happy ending too?

>>Flickr pic by Funky 64

Terminal Sleep… Dealings with the Devil

“Kath, your mom’s gone.”

That’s the phone call I expect to receive from my dad when my demented mom dies.

I have no idea when that call will come. Could be next week or could be 10 years from now.

Really not sure how this disease will kill my mom.

Alas, it varies from parent to parent. Dementia likes to mix things up.

My guess, however, is that dementia will continue to invade and warp her brain, twist her reality, manipulate her thoughts, finally ripping apart her mind with its black, twisted tentacles until she can no longer remember how to swallow her own food.

Larry carefully placed Olivia in her arms. And suddenly it was like a switch had been turned on. She smiled and cooed. Her love for babies cut through the Alzheimer’s fog. She was the little girl who was born to be a mommy. “Baby,” she said. “Baby.” It was the last word I heard her say. Soon she forgot how to speak. Then she forgot how to eat. And, lastly how to swallow. ~ From Irene Zutell’s new book, Pieces of Happily Ever After

This idea, DEATH….. is something I think about often. I think about her death and I think about my own. I don’t know if Death is something to be feared or something to be welcomed with open arms. Is Death my salvation or the Devil? If death is another part of life, why are so afraid of his arrival? I suppose the unknown is always frightening….. but it is what it is and we are so attached to living — yet we’re never taught how to cope with our own mortality. We cling on to life, as we should, yet we can’t let go when it’s time. Is this healthy?

Or has dementia twisted my mind too?

Death in near, that’s a fact. So what course of action should we take when he taps on our door? Should we invite him in? Or let him fight for his prey?

What pact will YOU make with the Death?

When she doesn’t know your name. She can’t place your face. She becomes agitated at the littlest thing. When other parts of her body begin to shut down. When pneumonia has invaded her lungs, when death is imminent — the inevitable right around the corner, let me ask again, what do you do? What should you do? What should I do?

The patient, Leo Oltzik, an 88-year-old man with dementia, congestive heart failure and kidney problems, was brought from home by his wife and son, who were distressed to see him agitated, jumping out of bed and ripping off his clothes. Now he was sleeping soundly with his mouth wide open…

Mr. Oltzik’s life would end not with a bang, but with the drip, drip, drip of an IV drug that put him into a slumber from which he would never awaken.

The New York Times today had an interesting article about Terminal Sedation...

… A treatment that is already widely used, even as it vexes families and a profession whose paramount rule is to do no harm. Doctors who perform it say it is based on carefully thought-out ethical principles in which the goal is never to end someone’s life, but only to make the patient more comfortable.

But the possibility that the process might speed death has some experts contending that the practice is, in the words of one much-debated paper, a form of “slow euthanasia,” and that doctors who say otherwise are fooling themselves and their patients.

Speed up Death’s arrival? This is an interesting question in the case of dementia. Do you give the demented damned medication that is only designed to SLOW the inevitable or do you let the disease take it’s course… naturally… allowing dementia to invade the brain at its leisure, turning it into protein-infested mush……….ultimately killing its host or at the very least, turning them into a person you hardly recognize.

Yes, this piece pertains to VERY end-of-life situations. Death is actually sitting on your bed, holding your hand. Dementia, however, can take years… even when your loved one is gone in the mind, their body still functions………………

Death is playing a game.

Their heart still beats.

Talking about death and dying is something we’re taught to avoid discussing at the dinner table. No one wants touch this very morbid topic, but it IS a part of life.

Very easy to gloss over, yet a very real question to ask.

Slow euthanasia………

An interesting ethical debate.

It’s SIX pages, but you might want to read the entire article……………………..

~Images by Pareeerica from FLICKR