My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

There Are NO Alzheimer’s or Dementia Survivors. None. Zero. Zip. Nil. That’s a Problem.

May 19, 2013

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This week’s New Yorker magazine features a fantastic article by Rebecca Mead called, The Sense of an Ending. I encourage you to read this article, which talks about innovative ways to care for people living with dementia. The star of this story is Tena Alonzo, the director of education and research at the Beatitudes Campus in Phoenix. If you remember, Tena shared her insights about placing a parent with behaviors in an assisted living facility or nursing home with this blog.

Also, please check out Phillip Toledano’s photographs of dementia.

Last summer, Frederick C. Hayes was admitted to the advanced-dementia unit at Jewish Home Lifecare, on West 106th Street. It was not an easy arrival. Hayes, a veteran of the Korean War, had been a trial lawyer for five decades. He was tall, and, though he was in his early eighties, he remained physically imposing, and he had a forceful disposition that had served him well in the courtroom. One of his closest friends liked to say that if things were peaceful Hayes would start a war, but in war he’d be the best friend you could have.

Hayes practiced law until 2010, when he went to the hospital for a knee operation. While there, he was given a diagnosis of Alzheimer’s disease. His combative tendencies had become markedly pronounced, and before arriving at Jewish Home he was shuttled among several institutions. Nobody could manage his behavior, even after Haldol, a powerful antipsychotic drug, was prescribed. In the advanced-dementia unit, he appeared to be in considerable discomfort, but when doctors there asked him to characterize his pain, on a scale of one to ten, he insisted that he was not in pain at all. Still, something was clearly wrong: he lashed out at the nurses’ aides, pushing them away and even kicking them. It took three aides to get him changed.

One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking. She crouched next to the bed, and spoke in a quiet, intimate tone. “I’m here to help you—do you hurt anywhere?” she asked, moving her hand gently over his chest, his abdomen, his arms and legs. With each touch, she asked, “Do you hurt here?” When her hand reached his belly, the moaning ceased and Hayes spoke to her. “I hurt so bad,” he said. “I promise you, we are going to fix this,” Alonzo said, and he thanked her. . . .

Subscribe to The New Yorker.

83bddf41169ac99a4a21cfcaf64b6a41Call me bitter, heck, even disgustingly angry; but when I saw this story on my Facebook news feed, then later listened to a report about the study on NPR’s Morning Edition, I rolled my eyes and thought, “Well, DUH!”

Caregivers are MORE than aware of the ridiculous costs associated with this dementia care — financially, emotionally and spiritually. And while a report like this helps to educate those whose pocketbooks are not yet being impacted by dementia, our elected officials (at every level) must vote to allocate funds to support research initiatives.

Unfortunately, thanks to our not-so-brilliant Representatives in Washington, who bicker like children and most certainly don’t deserve their lucrative pay, health insurance and pension, funding for research has been cut as a result of sequestration.

George Vradenburg, Chairman of USAgainstAlzheimer’s, said it best in a statement his organization issue last month: “From polio to cancer and from heart disease to HIV/AIDS, we have seen that a commitment to targeted research into high-cost diseases is a proven deficit reduction strategy.”

We need a cure. We need a way to delay or stop the onset of dementia. If we don’t come up with an effective treatment plan, dementia costs will bankrupt families.

In the meantime, if you did not know that dementia is a very costly disease, you should read the article below……………………. and maybe start saving your pennies now.

Originally appeared in The New York Times:

By 

The most rigorous study to date of how much it costs to care for Americans with dementia found that the financial burden is at least as high as that of heart disease orcancer, and is probably higher. And both the costs and the number of people with dementia will more than double within 30 years, skyrocketing at a rate that rarely occurs with a chronic disease.

The research, led by an economist at the RAND Corporation, financed by the federal government, and published Wednesday in The New England Journal of Medicine, provides the most reliable basis yet for measuring the scale of the problem. Until now, the most-cited estimates of the condition’s cost and prevalence came from an advocacy group, the Alzheimer’s Association.

Although some figures from the new research are lower than the association’s projections, they are nonetheless staggering and carry new gravity because they come from an academic research effort. Behind the numbers is a sense that the country, facing the aging of the baby boom generation, is unprepared for the coming surge in the cost and cases of dementia.

“It’s going to swamp the system,” said Dr. Ronald C. Petersen, who is chairman of the advisory panel to the federal government’s recently created National Alzheimer’sPlan and was not involved in the RAND study.

If anything, Dr. Petersen said of the study’s numbers, “they’re being somewhat conservative.” Dr. Petersen, the director of the Alzheimer’s Disease Research Center at the Mayo Clinic, is part of another team collecting data on dementia costs.

The RAND results show that nearly 15 percent of people aged 71 or older, about 3.8 million people, have dementia. By 2040, the authors said, that number will balloon to 9.1 million people.

“I don’t know of any other disease predicting such a huge increase,” said Dr. Richard J. Hodes, director of the National Institute on Aging, which financed the study. “And as we have the baby boomer group maturing, there are going to be more older people with fewer children to be informal caregivers for them, which is going to intensify the problem even more.”

The study found that direct health care expenses for dementia, including nursing home care, were $109 billion in 2010. For heart disease, those costs totaled $102 billion; for cancer, $77 billion.

The study also quantified the value of the sizable amount of informal care for dementia, usually provided by family members at home. That number ranged from $50 billion to $106 billion, depending on whether economists valued it by the income a family member was giving up or by what a family would have paid for a professional caregiver.

Michael D. Hurd, the lead author and a principal senior researcher at RAND, said the team could find no research quantifying such informal care for heart disease and cancer. But he and other experts agree that given the intensive nature and constant monitoring required to care for people with dementia, informal costs are probably much higher than those for most other diseases.

Dr. Petersen said, “Clearly, dementia is going to outstrip those dramatically.”

Without a way to prevent, cure or effectively treat these conditions yet, the bulk of the costs — 75 to 84 percent, the study found — involves helping patients in nursing homes or at home manage the most basic activities of life as they become increasingly impaired cognitively and then physically.

“The long-term care costs associated with people with dementia are particularly high because of the nature of the disease,” said Donald Moulds, acting assistant secretary for planning and evaluation at the federal Department of Health and Human Services. “People eventually become incapable of caring for themselves, and then in the vast majority of cases, their loved ones become incapable of caring for them.”

Each case of dementia costs $41,000 to $56,000 a year, the study said. Researchers project that the total costs of dementia care will more than double by 2040, to a range of $379 billion to $511 billion, from $159 billion to $215 billion in 2010. Because the population will also increase, Dr. Hurd said, the burden of cost per capita will not grow quite as fast, but will still be nearly 80 percent more in 2040.

The study used information collected over almost a decade on nearly 11,000 people from a large database called the Health and Retirement Study, considered a gold standard among researchers on aging issues. All of the people followed were given detailed cognitive tests, while a subset of them were more intensely evaluated for dementia and their results used as benchmarks to rate cognitive decline for the others, Dr. Hurd said.

Dr. Hurd noted that in addition to the estimates of people with actual dementia, earlier analyses of the same data estimated that 22 percent of people aged 71 and older — about 5.4 million people — have mild cognitive impairment that does not reach the threshold for dementia. In the study, about 12 percent of those people developed dementia each year, meaning that they experienced problems with memory, concentration and daily functioning that were severe enough to meet the medical definition.

The number of dementia cases calculated in the RAND study is smaller than that from the Alzheimer’s Association, which used a different database and tended to count people in earlier stages of memory loss. The association estimates that five million people aged 65 and older have Alzheimer’s, the most common dementia.

The RAND cost estimates for current dementia care are similar to the Alzheimer’s Association’s, but the association’s future cost projections are significantly higher: $1.2 trillion in 2050.

Robert Egge, the association’s vice president for public policy, said his group’s cost projections are based on the assumption that “more and more people will be in severe stages of dementia” in the future because they will be older. He said his group welcomed the RAND study, especially its comparison of dementia to other serious illnesses. It shows that groups using different methodologies reached the same conclusion about the high costs of dementia care, he said.

Dr. Petersen, whose team at the Mayo Clinic will be analyzing costs using a third distinct data set, said he suspected that “the reality is somewhere in the middle” of the RAND numbers and the Alzheimer’s Association’s projections.

When it comes to dementia, Dr. Hurd said, his team’s study could not capture the full toll of the disease. “One thing we haven’t talked about, and it’s not in the paper, is the tremendous emotional cost,” he said. “Economists are coldhearted, but they’re not that coldhearted.”

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!

A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.

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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.

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

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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.
 

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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. 

Five Survival Tips for Caregivers

February 13, 2013

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.

photoWe held hands and she fell asleep. Sometimes, all it takes is touch… a touch that lets you know, you’re not alone on this journey.

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