Leading Age & Great Minds Award

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Family Caregiver Award Winner – Kathy Ritchie (Primary Caregiver for her mother, a resident of Beatitudes Campus, Phoenix, AZ)The Exceptional Friend or Family Caregiver Award recognizes an individual who has demonstrated outstanding compassion and abilities in one-on-one caregiving for a friend or family member living with dementia.

Unfortunately, I was unable to attend the event in person, but I am tremendously honored to be recognized by Leading Age and the Beatitudes Campus. I am hunting down the video and will post to the blog as soon as I can.

In the meantime, here is my acceptance speech:

This award is a tremendous honor, and I’m incredibly humbled to be on this stage tonight. What I did for my mother, I did, because, at the end of the day, my actions had to sit well with my soul. Simple as that. And that’s why I left one life and started another when I moved home to Arizona in 2009. My mother needed an advocate, and I was determined to do everything in my power to see that she received the best care possible. It certainly wasn’t an easy road, and to this day, I live with the woulda’s, the shoulda’s and the coulda’s… as most caregivers can surely attest, the “what if’s” can keep you up at night! Unfortunately her dementia was unforgiving — my mother spent time at two psychiatric facilities where she was given psychotropic drugs to curb her behaviors, which were the result of her type of dementia; we were asked to leave three assisted living facilities and one adult day care center; and we’ve endured rejections from assisted living facilities… her behaviors meant she wasn’t a good fit.

The thing is, my story is not unique. There are so many families struggling to cope with their loved one’s dementia, and so many of those families lack the financial, emotional and even physical resources needed to adequately care for them. This is the quiet before the tsunami. The number of Americans who develop Alzheimer’s disease is expected to increase significantly — and that’s just one type of dementia. Right now, there is no cure, no way to prevent or slow the onset of Alzheimer’s disease or any other dementia, for that matter. That’s why I put our story out there. I want the world to wake up and realize we need help; we need a cure.

Over three-thousand days have passed since I noticed something was wrong with my mother. Today, she’s nearing the end of this heartbreaking journey. And while there is a very big part of me that wants to close this chapter for good, I can’t. I have a 2 month old daughter and I am determined to continue to be a part of the solution. I hope you’ll join me to raise awareness and to serve as an advocate for those who need it most.

 

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.

She Yells Too Much Or Finding Another Home

Just Breathe by Meredith Farmer

I got the call while I was on assignment in Tucson with a colleague. “I need to talk to you about your mom. She’s not fitting in.”

Of course she’s not.

She has Frontotemporal dementia.

She yells.

You knew this.

You accepted her knowing she would yell.

I hate you.

I returned to our table. We were having lunch. My face got tight. My mood had changed.

Still, I think I recovered pretty quickly.

Afterall, I had been to this rodeo before.

After mom’s stint in the psych unit, she was accepted into a dementia unit some 20-plus miles from me. I hated the distance, but it was the only nursing home that would take her. Medicare hates it when you spend too much time in a psych unit. The stay is costly. And, as a result, the psych unit, tries to churn you out of there ASAP.

This means experimenting on you with drugs quickly. Zoloft one day. Lithium the next. They find a cocktail of drugs to “stabilize” you and then off you go into the big, bad world.

The social worker at the facility spent some three weeks e-mailing and calling and faxing packets of information about my mom to various facilities around town. Not one would even entertain the idea of personally assessing my mother………….. The yelling. It was a serious issue. It disrupts other residents and can agitate them. Once they read that in the report, it was GAME OVER.

The social worker assured me we would find something. If not, my mom would stay at the psych unit……………. the idea caused me to lose sleep, but after a while, the notion was comforting.

Believe it or not, you adjust to lousy situations very fast. Plus, she was acclimating to her surroundings……………..

I hated the idea of moving her again, and after everything she had been through just to get admitted into the unit — 10 hours sitting in the Emergency Room, sticking something into her urethra just to get a urine sample — I just wanted her to have some peace and quiet. I wanted some peace and quiet………….. Plus, I was getting to know the staff, calling them by their first names…………..They knew me too: The daughter.

Margarita’s daughter.

One happy family.

During one of my visits, the social worker walked up to me with a huge smile and said, XYZ nursing home is going to take her. The director of admissions came out, met my mom, didn’t seem overly concerned about the yelling and said yes. I had never heard of the place. I started to panic. I knew ALL of the best facilities in town………… or at least the ones that earned 3-5 Medicare stars.

This place wasn’t on my list.

I researched the place and was not happy with the number of stars earned. My friend who works in the elder care industry had heard mediocre things……………… Unfortunately, I had no choice.

Do I keep her in a lock down facility where she could never go outside and possibly get even worse or place her at a state-approved nursing home.

It was the only home that would take her. I had to place her. I couldn’t take her home. My mom is a full-time job requiring 24/7 care.

Funny thing about this disease, or at least my mom’s disease, you have to learn to let go. You have to learn that you will never get the very best…………….. Especially because money is involved and wait-lists to the places that might actually help my mom are long.

While the rest of the world is picking a fight over birth control; I am fighting for a bed for my dying mom.

While the rest of the world tries to get rid of any kind of social safety net like Medicare; I worry that one day we might lose the aid we receive; then who will take care of my mom? Sure, I could quit my job, but then who will take care of me financially and my mom? Allow me to reiterate: My mom is a full-time job.

While the rest of the world is fighting about when life actually begins; we let the living elderly rot.

What is wrong with our world?

I see the world as one giant, mostly empty glass. I don’t care for optimists because optimists have not suffered. They have not witnessed suffering. They have not walked a mile in the shoes of someone who is suffering.

I am a realist-slash-pessimist. I am aware that I have my limitations. I can only do so much to help my mother now. I also don’t get my hopes up that things will work out…………………. like when she gets kicked out of a nursing home.

Things don’t always work out.

Then again, sometimes they do………………… but I refuse to get excited about it, because something always interrupts the small victories.

We found a bed for my mom. A good bed. She will be transfered to a unit that has a great reputation for dealing with behaviors.

Every resident at this unit has been kicked out of a previous home (or two). My mom will be in excellent company.

Unfortunately, as the new administrator told me, you have to fail to get to here…………….

True story.

Part One… The Beginning of the End

Life with my demented mom was proceeding rather smoothly in recent days………………. by smoothly, I mean mostly bumpy, lots of twists and turns, blind spots and a few “watch for falling rocks” signs dotting the road………….. And then she drank dish soap. The trauma of vomiting and ingesting something that should never ever be ingested took its toll. She was bed-ridden, refused to eat, slept for hours on end, and it all came to a head last Friday. I came over after calling the house………… my dad and I were supposed to have lunch…. I was hoping she would feel better by now….

“Um, yeah, Kath, I can’t get her out of bed. She peed in the bed.” I left work and headed over. I thought I could fix this. I’m the fixer in the family. I fix things when they go horribly awry. I tried to get her up, gave her some Pedialyte, and finally decided to call 911.

A truck carrying what seemed like a dozen first responders came to the house….. they took her vitals, tried to talk to her (um, I said she is severely demented), and then we waited for the ambulance to come. Small talk is always awkward in these circumstances……. So, when did she get sick? How long has it been going on? Are you an only child? I was sitting on the bed right next to my mother who was still lying in her own urine. She had refused to move and I couldn’t push her over………. she’s still stronger than me. What a sight.

Until this blog, I’ve mostly omitted what went down, instead focusing on the dreamy EMT who tended to my mom….. EMT Scott. It’s easier to focus on the mundane and mild versus the traumatic and grotesque. It’s also probably best for my own mental state. No one should have to see their parent in such a horrifying way.

Meantime, I wondered what they would tell their families when they got home that night….. Christ, you won’t believe what we walked in on. What a fucking mess. What the fuck is wrong with people?…. In the ambulance, I apologized to one of the guy who was riding in the back with me…. I tried to explain my situation to him. “It’s cool, don’t worry, you can’t even imagine what we see…. this was nothing,” he tells me.

I forced myself to believe him.

I wonder what his family is like………..

Soap, as it turns out, wasn’t the issue….. Fun fact: soap goes right through you, so manga!! Eat all the soap you want. You’ll puke it or poop it out. But it won’t kill you.

We arrived at the ER around 11 or 11:30am………. several tests, a shot of Ativan and a catheter later, and nothing. There was nothing wrong with her except that she was dehydrated. And demented. Severely demented.

And by severely demented, I mean severely demented.

Of course, her disease and dehydration didn’t really matter……………. what mattered was the insurance company. And the insurance company was apparently saying that mom needed to be released like the next day. A nurse asks me if we can take her to a group home.

This is not how I planned to place my mom.

A group home?

She has a catheter inside of her body. She has an IV. She can’t move. You want me to find a group home so you can discharge her less than 24 hours later? Um. Fuck you. She’s staying. I will not be rushed into anything…. not again.

Sarah the social worker comes is…. she’s cool. I explain the situation….. At this point, mom can’t go home. Dad can’t handle her anymore, it’s taken a severe toll on his well-being. And clearly, she can get into anything. It’s time for her to be placed, but a few pieces of my plan were not yet in place……. namely, no ALTCS, Arizona’s Medicaid. We were “ALTCS pending.” Dreadful status and NOT what a home wants to hear………… So, I might be able to pay you, just not yet. Maybe next week. But can you like take my mom and take good care of her?

The truth is, it’s a business…. but I’ll get into that later.

I told Sarah where I wanted my mom to go….. I had researched this place. I had a plan to essentially get her used to this place…………………. What happened next was always a possibility. I was just hoping God was on my side.

Man plans. God laughs.

There are no beds and there’s a waiting list. 

And so began the mad rush to find a group home, a nursing home, a place that would take my mom……… I hate deadlines. I write for a living and deadlines are a part of my life. Granted, I do better with deadlines, but this deadline was bullshit.

>>Flickr pic by Elycefeliz

Go to Jail. The Game of Dementia

I’ve been thinking a lot about Amanda Knox (yes, the Foxy Knoxy)…. the American student who was imprisoned for some four years in Italy…. I’ve been thinking about her because much has been written about her ordeal, what she went through day in and day out, her routines, her rituals, the things she did each and every day so she could survive, so she could stay sane……………… her “suffering” got me thinking about the prison my own family lives in.

Allow me to insert my own disclaimer here…………….. No, I can’t relate to Amanda Knox or her trials and tribulations, that’s not the point of this blog post… k?

My mom, or what’s left of my mom’s gray matter, is trapped……….. locked away and no one can reach her……………… But what scares me, what is truly a revolting thought, is the idea that there might be a glimmer of her screaming for help.

To hear her.

To save her.

We know so little about dementia…………… words like, “a fog” are used to describe the state of the demented mind, but what if we’re wrong? Way wrong. What if she’s lost, trapped, unable to find the word, to reach out and tell us that she’s still here?

And then there’s my dad. My dad is in a different kind of prison. His prison is both physical………. he lives at home with her and he stays there, mostly 24/7………. and emotional………… he struggles to cope. My dad is angry. To be painfully blunt. He’s bitter, resentful, angry and he has a nasty habit of going back in time to relive all of the woulda’s, coulda’s and shoulda’s of his life. A dangerous (and addictive) game to play…….. I’ve never seen my dad like this, and it’s taken a toll — on him….. and on me…….. I mean, let’s face it………… the obvious coulda is their marriage…………. had he not married my mom, he coulda had a different life. Had I not been a factor, he woulda had options………… my parents marriage was hardly perfect; not the model example of wedded bliss…………….. I knew that VERY early on.

I remember wishing that they would get a divorce because I hated the fighting, the yelling………………. I would take long walks when they would argue and just sit in a park by my house — we lived in a mountain town in New Mexico and the silence was always welcome……………. to this day, I hate really loud noise………… loud music, loud people……….. I just want to savor the stillness, the hush………………..

Unfortunately, when coping with one parent who is deathly sick and the other who is struggling to stay afloat (he flails so much, I worry he could take me down with him) …………it puts me in a position whereby I’m trying to save everyone…….. trying to keep the peace, trying to play the therapist when I’m the daughter………… trying to make sure needs are met, trying to make sure life feels normal (I know, believe me)…….. trying to do what I can so the quiet stays for as long as possible…

I love my mother and my father……… I miss them, and yet, they hardly know me………. well, he hardly knows me………. still, they’re all I have in terms of my family of origin; and sometimes, when I sit back and think about how this grotesque disease is slowly decimating my family, I can’t see past the moment……….. I can’t look into my future…………. it’s black. There’s nothing.

It’s a frightening thought, but then not really because it’s my reality……….. my own prison.

If that makes sense.

>>Flickr pic by Funky 64…www.lucarossato.com 

Wishing Her Away

I started this blog to chronicle and share my experience with my mom and her disease… but the more I wrote, the more it forced me to examine my own relationship with my mom (and myself)—before she became my demented mom.

It’s easy to lose sight of the “before” when the present is always is so incredibly, in-your-face-front-and-center present… that probably explains my own memory loss when it comes to my mom… for whatever reason, I can’t fully remember what she was like before she became sick, before the disease stole her away… my memories are mostly feelings… of course, occasionally, somethings pulls me back in time and I catch a glimpse of our mother/daughter dynamic… that’s always weird and painful because you also see how you were…

Last Friday, we were sitting at my dad’s dining table looking at old pictures… Jon was snapping photos of my incredibly awkward stage and uploading them to Facebook… we were laughing and listening to dad share stories… stories about my grandpa and how he was offered a 2nd Lieutenant position because he could speak Italian… I told my dad that after this last trip to Italy, I decided I was going to take Italian at the community college, I suggested he join me…

………………………………and then I remembered Independence Day… the movie.

I think it was 1996. ID4 was a big deal, I could hardly wait to see it. My dad wanted to see it too. My mother was never into “scary” movies; not 10 minutes into it, she stormed out of Saving Private Ryan—dad was pissed. This summer was different. My mom was going to Ecuador for a month or two. I don’t remember if I was going to meet up with her later (we traveled separately for two reasons: 1- she would stay longer than I would and 2- she stressed me out when we flew—turbulence for my mom meant the plane was going down). My cousin was getting married in Minnesota that August and I was in the wedding party; I was probably staying home, getting ready for the Minnesota trip and working at the local movie theatre.

I remember feeling happy that my mom was leaving, and that my dad and I would finally get to hang out—just the two of us. My mom and I never really had deep conversations from what I recall; I think maybe we were culturally divided to some extent… I was an American kid being raised by an Ecuadorian mother… our differences were stark. I couldn’t always relate to my mom, I’m sure she felt the same frustrations… how do I communicate with this foreign child of mine? My dad was different. My American father. More like me. But then again, my dad traveled a lot for work and he wasn’t always home… so maybe it was just having someone else to talk to… that, and I felt like I could talk to him on a different level… maybe deeper, or maybe it was as simple as wanting someone else to talk to

As an only child, I felt lonely a lot.

I guess I hadn’t settled into being OK with just me.

The morning of our movie date, my dad took my mother to the airport… that night we went out to eat and caught the movie. I remember telling him on the way home something about my mom… his response was something like, “she’s your mother…” I can’t remember what was said or what I said… I was 19. I think I just wanted my mom to get me, to understand me and that I was not like her in many ways.

I once had a therapist tell me that when it comes to mothering, there are different behaviors or something… there are mothers who are incredibly nurturing when the child is a baby or toddler; their ability to connect is deep; but when that child transitions into adulthood, something happens… a shift. A miscommunication. The mother doesn’t perhaps know how to mother an their adult child. I don’t really remember how she explained it, but that seemed to be our relationship… my mother was an incredibly warm and loving parent, very nurturing. She would do anything she could for me. Even when I was a teenager and in my early 20s, we would spend time together and go shopping—it was our thing, perhaps our way of communicating. But we never reached that “friendship…” stage… where you could talk and confide, share secrets, talk about life, it’s meaning, how to cope and deal with life, men, careers, life, family…. we were clearly mother and daughter. Very black and white. No crossing of lines… I don’t know, maybe that “friendship” or blurring of lines is what happens as you get older.

I wouldn’t know… I started losing my mom when I was 27 or 28.

Fast forward.

When I asked my dad to join me; it struck me as ironic that so long ago, I wished away my mother… and the god’s listened to me. They actually listened.

They took away my mother.

So there I was, 15 years later (almost one week away from the day), sitting at that dining table, looking at old photographs with a glass of wine, realizing what I had done.

I opened Pandora’s Box.

Flickr pic by Big Fat Rat