Huffington Post Interview

huffpostKathy Ritchie’s mother is living, yet she is mourned for her loss of self. She suffers from dementia.

Ritchie, founder of the blog My Demented Mom, visited HuffPost Live to discuss the disease affecting five million Americans and her personal struggles with her own mom’s diagnosis.

“It is painful, it is a trauma,” she told host Nancy Redd of the crippling disorder. “I have been grieving my mother for a very, very long time.” Ritchie recalled seeing her mother in terrible states, heavily medicated with antipsychotic drugs. The woman was not the mother she knew, and not the grandmother she wanted her newborn daughter to remember. “It’s hard to talk about,” she said. “She was just a really good person.”

Ritchie’s blog opens the discussion to others faced with similar caregiving demands, but it also helps her cope and push forward, knowing her daughter will one day read about her efforts. “The blog captures so many moments and I want her to know the kind of woman her grandma was and what I did for my mother,” she said.

To watch the full segment, click Here.

Going to the Funeral is the Easy Part

The Funeral of Atala
The other day, my friend Gary posted an NPR “All Things Considered” interview with a woman named Deirdre Sullivan to his Facebook wall. The gist of the interview was the importance of going to the funeral — a lesson that was imparted to Sullivan by her father.

Sullivan says this: I believe in always going to the funeral. My father taught me that. The first time he said it directly to me, I was 16 and trying to get out of going to calling hours for Miss Emerson, my old fifth grade math teacher. I did not want to go. My father was unequivocal. “Dee,” he said, “you’re going. Always go to the funeral. Do it for the family.”

The interview got me thinking. And then it began to irritate me. My mother has mostly been forgotten about. I rarely hear from her family or friends — family and friends she did so much for before the dementia consumed her gray matter — even on her birthday. Yes, I receive the occasional Facebook message or email, but mostly, I hear from no one.

I suppose life goes on. We reside in our own purgatory.

It’s been like that for a very long time.

Which brings me back to the whole funeral thing.

Sullivan says this about her own father’s funeral, The most human, powerful and humbling thing I’ve ever seen was a church at 3:00 on a Wednesday full of inconvenienced people who believe in going to the funeral.

When my mother finally takes her last breath, she will likely be surrounded by myself, her husband and my boyfriend (a man who has done more for her than her own siblings). As for the funeral, I don’t know who will reach out and ask about attending. As for those who completely abandoned her in life — I am thinking of a select few — well, they likely won’t hear about it from me.

If you weren’t there for her in life; why bother in death? Let’s face it: Going to the funeral is the easy part; hardly an inconvenience, especially if you never had to witness the wretched reality. The truth is, if she mattered at all, there would have been visits, inquiries, phone calls, offers of support — especially during those incredibly dark, dark days when she was locked away or when they wanted to electrocute her brain.

Where were you when she was held in a lockdown psychiatric unit? Do you have any idea what it’s like for a daughter to find her own mother covered in her own feces? Do you have any idea what it’s like to watch your mother pound on the glass, screaming to go outside? You moved on. You forgot about her. 

And now you want to go to her funeral?

The most human, powerful and humbling thing would be to show up. Not in death. But in life. No matter how grotesque the circumstances.

Don’t Stop Asking About My Mom

photo

I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.

Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.

I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….

My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.

No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.

Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………

I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.

My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.

She inhabits a place somewhere between life and death.

It’s a grotesque place.

By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?

I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!

After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.

I wonder if there is a heaven………………or a hell. I wonder what God will decide.

I wonder if He stopped asking about my mom, too.

 

6 Reasons You Should be Scared of Alzheimer’s & Other Dementias

1. Alzheimer’s disease is the sixth leading cause of death in the United States.

2. More than 5 million Americans are living with the disease (I’m guessing this figure does not include Americans living with other types of dementias like FTD).

3. 1 in 3 seniors dies with Alzheimer’s or another dementia.

4. In 2012, 15.4 million caregivers provided more then 17.5 billion hours of unpaid care valued at $216 billion.

5. Nearly 15% of caregivers for people with Alzheimer’s or another dementia are long-distance caregivers.

6. In 2013, Alzheimer’s will cost the nation $203 billion. This number is expected to rise to $1.2 trillion by 2050.

If you haven’t been touched by dementia, you will be. It’s only a matter of time. If you have, then you know more needs to be done in terms of funding and research. WE NEED A CURE!

5 Tips for Talking to Someone With Alzheimer’s Disease

39a6039d182db4ad813eef2552c7d722

1. Diminish distractions.

2. Converse one-on-one.

3. Keep things simple.

4. Avoid arguments (this should be number 1).

5. Just keep talking.

I would also like to add:

6. Walk in their shoes.

7. Step into their world and speak their “language” (even if it makes no sense………………… my mom was only able to articulate herself using the words, “despierta America” and “la fruta”).

8. Take a deep breath if you get frustrated (because you probably will).

9. Talk to other family and friends about how to best communicate with your loved one. They might keep visiting if they feel like they’re actually helping or supporting the person with dementia.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

 

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives