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.

We’re Young, We’re Poor, & We Need a Cure. Our Lives Depend on It

Screen Shot 2013-02-11 at 8.42.56 PMAs I write this blog, I’m trolling Twitter. Just seeing what’s out there in the way of caregiver support, resources, news, etc, etc, etc. Turns out, there’s a lot shaking in our world. A quick scroll on my feed shows Tweets about everything from incontinence and nursing homes to tips on how to be an organized caregiver (“organized” and “caregiver:” two words that don’t really go together). Lots of information. Some of it useful; most of it scary.

(No, you don’t and won’t have enough money to grow old).

While you’ll absolutely find information about caregiving or being a caregiver, much of what’s out there is geared towards Baby Boomers… because let’s face it, Baby Boomers are a hot commodity right now.

Why? They’re rich and they’re going to get sick.

As for the under 40 set, well, we’re sort of preoccupied with paying off our student loans, buying our first home (or drowning in it, as the case may be), finding our dream job, finding Mr. or Ms. Right, making babies, having babies and/or getting divorced.

You know what else we’re doing? We’re NOT saving. Saving for the day we develop a long term illness like dementia.

That said, we’re about as undesirable as they come. And you should be pissed off about that. After all, we’re not safe from Alzheimer’s disease or other dementias… there are no cures, no means of prevention. NADA.

Still not convinced? Just Google, “Alzheimer’s and 2050.”

This is the quiet before the Tsunami.

Here are a few things you should know:

  • Alzheimer’s disease is just one of several types of dementias (my mom has frontotemporal dementia).
  • HIV/AIDS was once considered a death sentence; today it’s a “manageable disease.” That’s because a lot of money was thrown into the research bucket and antiviral drugs were developed.
  • Medicare will NOT pay for nursing home/assisted living care.
  • You can’t afford to grow old. According to Genworth’s 2012 Cost of Care Survey, which I found in an online article on Next Avenue,  “one year of long-term care ranges from $39,600 for an assisted living facility to $81,030 for a private room in a nursing home.” (source: Next Avenue; Genworth)
  • Alzheimer’s disease is the sixth-leading cause of death in the U.S. and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. (source: 2012 Alzheimer’s Association, Facts & Figures report)
  • Have you ever changed an adult’s diaper? More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias.  (source: 2012 Alzheimer’s Association, Facts & Figures report)
  • In 2012, the direct costs of caring for those with Alzheimer’s or other dementias to American society will total an estimated $200 billion, including $140 billion in costs to Medicare and Medicaid. Unless something is done, the care costs of Alzheimer’s and other dementias will soar from $200 billion to a projected $1.1 trillion (in today’s dollars) by 2050.  (source: 2012 Alzheimer’s Association, Facts & Figures report)

What can you (reasonably) do?

Here’s the myth: Alzheimer’s disease and other dementias are diseases old people get. Here’s the truth: People in their 30s, 40s and 50s are developing dementia. Here’s the other truth: This disease will touch your life one day, if it hasn’t already.

Dementia is not an old person’s disease.

Reverse Empty Nest Syndrome

http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.

Torture.

Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.

***

“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

Life After My Demented Mom or A New Year: Time To Think On Death

Clock Work / martinak15

Clock Work / martinak15

It’s another year.

And I am trying to be optimistic about 2013 — optimism is not my strong suit — mostly because, at this point (knock on wood…… the gods can be very cruel), the worst thing that could happen is that she finally passes away………………….

She must be close. She can’t walk. She can’t talk. She yells. When she’s not yelling, she sleeps.

I’ve been thinking more about death and dying. What will it be like when she sips her last breath? Will I feel her soul leave her body? Will she die in her sleep? If she dies in her sleep, will something wake me up? Will I feel her departure? Or, will her organs slowly shut down? When will I finally hear the words, “she’s actively dying?”

My lovely yoga teacher Lea suggested I read The Tibetan Book of the Dead. It’s not what you think. This isn’t some exercise in the macabre. I just want to be ready. To use Lea’s words, I want to “hold the space” when that time comes. I want to be with my mom when she’s “actively dying.” I want to hold the space. I want to help guide her on her journey to wherever she goes.

(She is a saint and, no doubt, will live in paradise)

I want to make her passing as peaceful as possible.

For her.

For me.

And then  my life will start over again.

Who am I without My Demented Mom?

There’s a lot to contemplate in 2013.

>>Flickr pic by martinak15