6 Questions You Need to Ask Before Placing Your Loved One with Dementia in an Assisted Living Facility

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I was sitting at lunch with a colleague when I got the call. “I need to talk to you about your mom. She’s not fitting in.” Of course she’s not fitting in. She has dementia. Our exchange was brief. I asked her why, and then I got angry: You met her at the psychiatric hospital, you read her paperwork, you accepted her knowing every last grisly detail… you knew everything! After hanging up the phone, I walked back to the table thinking, “Not again.”

Behaviors stemming from Alzheimer’s disease or other dementias like Frototemporal dementia might mean placement in a traditional assisted living facility will be difficult, if not impossible. And even those facilities that claim to deal with dementia or Alzheimer’s-related behaviors don’t. At least that’s been my experience.

Since 2009, my mother has been asked to leave two assisted living facilities and one group home — all of which were licensed to deal with dementia/Alzheimer’s patients (one place boasted about the specialized dementia training they gave their caregivers) and, in theory, her behaviors —  and spent time at two geriatric psychiatric hospitals, where she was “stabilized” with drugs including, lithium, depakote, zyprexa, and the list — quite literally — goes on. One doctor even wanted to perform electroshock therapy, claiming her behaviors were the result of bipolar disorder (she was in her early 70s at the time and had never exhibited bipolar behavior).

Being asked to leave a facility was, by far, one of the most stressful, awful, even embarrassing experiences of my life… How could this have happened? Where are we going to go? What do I do? Did this really have to happen on a Friday?

Unfortunately, one of the lessons I’ve learned over the years is that somehow, you must stay one step ahead of the disease. I confess, despite knowing this, I’ve failed miserably. I can’t keep up with it. It jumps around, it’s quick… it’s unpredictable.

Ask me if I feel like I’ve made my mom’s life better and I’ll tell you no… but I did the best I could  with the knowledge I had at the time.

Fortunately, I’ve crossed paths with several incredibly smart people along the way. Did I mention this disease involves networking? People who are not just elder care experts, but folks who are on the front lines — some of them have even lived through it… they not only see, they know how difficult it is for families to survive, day-in and day-out. They know that dementia is not always a quiet, peaceful disease. And they know that sometimes, families have to choose between bad and worse.

“Selecting an organization is not easy,” says Tena Alonzo, the Director of Dementia Research at the Beatitudes Campus in Phoenix, AZ. ”Often, family decision-makers are called on to select the organization quickly. This can be a recipe for disaster and one that contributes to extreme remorse and guilt.”

So, when it comes to finding an assisted living unit for a behavioral parent, what questions should you ask to hopefully avoid placement in the wrong facility?

Below, Tena shares her suggested questions:

  • Describe how you will get to know (name).
  • What is your policy on personalizing daily routines? Can (name) sleep when they want or need to? Can s/he eat when hungry?
  • What is your staff-to-person ratio, and what is the average length of employment for staff members, overall?
  • What is your policy for communicating with (name’s) decision maker?
  • How will your organization honor (name) wishes for spirituality and end-of-life?
One last question:
  • Since 90 percent of people with dementia experience changes in personality and behavior, how does your organization address challenging dementia-related behavior?
“If the answer is, ‘We use medications or we discharge them to the hospital,’ RUN,” says Tena.

According to Tena, the appropriate answer would be:
“Dementia-related behavior is part of the dementia process. We know that the person communicates through their actions, and we will do what we can to interpret the meaning of the person’s actions and take care of whatever might be triggering the dementia-related behavior.”
She says, “this basic method for addressing dementia-related behavior separates the organizations that provide quality dementia care and service and those that don’t.”Of course, at the end of the day, according to Tena, the best advice is to choose an organization well in advance of when the person needs it.
 

President Obama Says the “A” Word: Alzheimer’s

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During President Barack Obama’s State of the Union address last Tuesday, he did something pretty remarkable……………………….. he mentioned Alzheimer’s disease in his speech. That was the first time a president has mentioned Alzheimer’s in his #SOTU in 13 years.

13 YEARS!

That’s a lot of years to be quite on this issue.

“Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s; developing drugs to regenerate damaged organs; devising new material to make batteries ten times more powerful.  Now is not the time to gut these job-creating investments in science and innovation.  Now is the time to reach a level of research and development not seen since the height of the Space Race.”

This mention is a huge step forward in terms of raising awareness of the disease among Americans who have not yet been touched by it. Here’s the thing: We have to make Alzheimer’s disease a big deal. Washington must make this a national priority because Alzheimer’s disease and other dementias (like Frontotemporal dementia, vascular dementia, mixed dementia, Lewy body dementia, etc) will touch everyone in this country, either directly or indirectly…………………………………………………….. remember, calm before the Tsunami.

While we can’t get overly excited by the president’s mention of the disease, it seems pretty obvious that the man knows Alzheimer’s disease and other dementias are problem that will cost our country dearly.

So what can we do to make sure Washington knows to make this disease a priority? Well, for starters, you can send an e-mail.

From the folks at the White House:

President Obama’s State of the Union address is just the beginning; now we want to hear from you. Highlight a passage of the speech that was meaningful to you and tell the President how you’re connected to that issue. Then share that part of the speech with your friends.

Click to link to President Obama’s SOTU. 

Spread the word. Post the link to Facebook, to Twitter, to everywhere you can because we have to do something or our Congress will do nothing.

See: Filibuster. 

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

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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

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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