What Does it Mean When a Person With Dementia Goes on Hospice?

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This piece originally was published Aug. 16, 2015, for CaregiverRelief.com. Reprinted here with permission.  Special thanks to Diane Carbo, purveyor of Caregiver Relief. My dad eventually was taken off hospice after being on it for two years and then died less than two months later, Sept. 27, 2015.

By David Heitz

I want to preface this column by saying that hospice programs are a blessing for people with dementia in numerous ways. My intention in writing this piece is to educate those of us with loved ones battling dementia-related illnesses so that we can get the most out of hospice programs.

But I’m going to start with a hospice horror story.

It didn’t take long after my dad entered a memory care/assisted living facility in July 2013 before the executive director informed us that he had become more than they could handle. With dad’s frontotemporal dementia diagnosis, his outrageous behaviors, angry outbursts, and refusal to allow certain people to bathe him, he had become too much.

She advised he probably would be better served in a nursing home. My brother and I, who don’t get along about anything as it pertains to our dad’s care, were devastated. My brother hated the thought of spending an extra $2,000 per month on a nursing home. I hated the idea of moving dad from an architecturally stunning facility to a hospital-like setting.

We found a solution in hospice care. By getting dad approved for hospice, that meant that hospice workers came to dad’s assisted living facility a few times per week and gave the staff extra help in caring for him. The tab for hospice, which was about $8,000 per month, was picked up by Medicare.

But in May 2014, I got a call from the facility saying dad had slouched down in his chair at lunch and had become unresponsive for a while. I was suspicious, as my brother had just taken dad to the doctor a day prior. I had asked my brother what had happened at the doctor visit, and my brother replied, “He doped him up some more.”

When the wellness director called, I asked her, “Could this be result of some of the new medications dad’s doctor had put him on?” She responded that, in fact, the doctor had discontinued all medications due to dad being on hospice.

I admittedly went into a rage. “Insulin too?” I asked. The answer was, yes, insulin, too.

Hospice Horror Story Sends Me Into Rage I Never Felt Before

When dad went on hospice, I knew enough as a health reporter to ask what would happen with dad’s insulin under the program. Dad was by no means dying. He ate five meals per day, which included three breakfasts that he would eat because he would forget that he already had eaten and demand to be fed again (the facility served breakfasts in three shifts). Taking him off insulin would be inhumane, as he regularly had blood sugar readings spike into the 400s.

The hospice nurse replied that Medicare only pays for medications related to the terminal diagnosis, and that likely would not include dad’s insulin. (Editor’s note: This absolutely is not true as it pertains to insulin, I since have been informed by a well-known national law firm that advertises on television every 30 minutes). I advised her, in the presence of my brother and my dad, that as a John Deere retiree dad has excellent health insurance in addition to Medicare, so that would not be an issue. The John Deere insurance would pay for the insulin.

I apparently thought I had warded off my greatest fear – that someone would attempt to revoke dad’s insulin when he was still active, eating, talking, and quite frankly having nice visits with me every single day. Why did I suspect this could be a possibility? I won’t go into that. I can tell you that the doctor’s nurse, Carol, said, “The doctor must follow the POA’s wishes.”

I raised holy hell with my brother, the doctor, and let out a drunken scream heard round the world on social media. Dad was back on insulin the next day. I quit drinking after nearly dying myself that night (attempted murder is how I see it, although it was listed by police as “assault”) and remain sober 15 months later. (Editor’s note: I will be sober three years in May, despite ongoing harassment related to being dad’s caregiver, 15 months after he has been put into the ground; his estate is not resolved and has become an ugly court battle between myself, my brother, and a neighbor of 50 years. I have spent $5,000 thus far just to get what my dad left me in a simple share and share alike will. I pray it all comes to an end Jan. 11 at the next status hearing; all parties involved have suffered long enough. I share this because this is not at all uncommon when one sibling is the caregiver and the other is the POA/executor. Make sure your parents put everything in writing including a binding caregiving contract between you and your sibling(s)).

Let’s fast forward 16 months, to April 2015, when dad landed in the ER. He was found on the floor of his room in the facility in a pool of blood with deep gashes to his face. That is exactly what the nurse on duty at dad’s facility told me when I got the 5 a.m. call.

Medicare has refused to pay my dad’s hospital bill for that trip because dad was on hospice. The John Deere insurer did pay some.

After 18 months, even though dad has continued to decline, hospice abruptly was stopped two weeks ago. (Editor’s note: This was the first step taken by the state of Illinois in seeing to it that I was reunited with my father. My dad was what was known as a 2:1, meaning it took two people to handle him at all times. It is a violation of state law to live in assisted living/memory care if you are a 2:1 UNLESS you are on hospice. The reason I was apart from my dad is because I was allegedly trespassed from seeing him (that was yet another lie, no paperwork ever was filed) after reporting an intruder at the facility on June 6, 2015, and then being taken to the Rock Island County Jail, stripped naked, emotionally tortured…ON NO CHARGES AT ALL. I did not see my dad for 108 days; he died 21 days after our reunion. The town I live in is a disgrace and people will be held accountable for all of this if only by their maker – but me thinks the justice system is going to work and people are going to be held accountable in that way, too. I know I need to forgive but I am not there yet. Even in the throes of addiction, I never could have mustered the evil that resides in the people responsible for all of this, particularly those who wear business suits. The others, I at least have some pity for and therefore am at least beginning to feel some compassion toward them).

Don’t Be Pressured: Be a Picky Hospice Shopper

I am not my dad’s power of attorney, and my brother and I are generally unable to communicate civilly. I’m certain he does not understand the ins and outs of the hospice program, and when I’ve tried to explain it to him, he has no interest and makes a mockery of my health reporting background. He works in department store security. He once said, “I work in law enforcement!” to which I replied “And I’m a doctor” and that is about the only laugh we have shared together in five years.

Kurt Kazanowski is a hospice and home care expert as well as a global consultant to companies that provide hospice care. He’s an ardent proponent of hospice, and with good reason. I shared my story with him and asked how I could use it to better educate people who have loved ones with dementia and are considering putting their loved one on hospice care. My intention is by no means to scare people away from hospice care, but I also want them to know how to get the most out of it and avoid problems and misunderstandings.

The author of “The 7 Pillars of Growth for Home and Hospice Care” and author of “A Son’s Journey: Taking Care of Mom and Dad” had this to say.

First, you need to be picky and careful when selecting a hospice provider. He said it is irrelevant whether a hospice is for profit or non-profit. What is important is that family members interview at least three hospice providers and carefully select the right one for them.

Diane Carbo, purveyor of this site, also wants to remind everyone that hospice choices can be changed mid-stream.

Kazanowski said 10 to 12 percent of residents in long-term care facilities today meet CMS guidelines for hospice. But providers can make potentially subjective decisions as to what qualifies a patient and what doesn’t.

The stigma associated with the words “hospice” prevents many families from selecting the service. And with good reason. I burst into tears when the director of dad’s facility brought up hospice, because I did not fully understand myself what it meant. I assumed it meant he would be dead soon.

“Many people are not being identified as candidates for hospice, and there is a stigma,” Kazanowski said.

Eight Interview Questions for Hospice Providers

Here are eight questions he says you should ask potential hospice providers:

  1. What is your turnover rate? The national average is 15 percent for hospice companies.  If the company you are interviewing has a higher turnover rate you need to understand why.
  2. What is the average case load for a nurse?  The national average is 13 patients per nurse. This is a key question to ask.
  3. Are your physicians board certified in hospice and palliative care medicine?  Just like you won’t go to a family physician for open heart surgery (you want a board certified cardiovascular surgeon), you want a physician who is board certified in hospice and palliative care medicine on the hospice company team you select.
  4. Does the hospice have full time physicians? You want to know if the hospice you select has a full time medical director.
  5. Does the hospice offer all four levels of hospice care? There are four levels of hospice care:  routine, respite, continuous care and general inpatient.  Does the hospice you select offer all four levels of care?  Ask for details in how they offer these four levels of care.
  6. Does the hospice offer general inpatient hospice (GIP) care? The GIP level of care is the “ICU” of hospice care and is intended to care for patients who have break-through pain and symptom management issues.  You need to know and understand how the hospice you select delivers this level of care should your loved one ever need this specialty type of hospice care.
  7. Does the hospice offer music therapy? The basic hospice benefit does not require a hospice to offer music therapy.  If the hospice you select offers music therapy they are going above and beyond the basic hospice benefit.
  8. How many volunteers does the hospice have? The use of volunteers is part of the conditions of participation a licensed hospice must offer. Ask how many volunteers the hospice has and how many volunteer hours the hospice provides per month.

How Did These Things Happen to My Dad?

As for my dad’s case, Kazanowski said family members should ask a hospice provider what their philosophies are about a patient’s medications. Sometimes when a patient is taken off medications they actually do better, because it may turn out they were overmedicated.

A decision to take a patient off insulin, as in the case of my dad, should have been decided at a meeting held every two weeks between the physician, the hospice provider, a nurse, and a social worker. Family members are entitled to attend these meetings, Kazanowski stressed. Of course, the POA would need to approve who is able to attend.

As for dad’s emergency room bill, it’s true that Medicare generally will not pay in such situations. Kazanowski said one way of handling would have been to simply state in the ER a request to revoke hospice. Of course, that would have to be made by the POA. In that case, Medicare would have paid for my dad’s bill, and then dad could have gone back onto hospice later.

“I don’t advocate that that’s the best way to handle things,” Kazanowski added.

In his book, “A Son’s Journey,” Kazanowski devotes an entire chapter to hospice care, including the “10 Myths of Hospice” and “Demystifying Hospice.”

With dementia a global epidemic, and with so many people in the U.S. meeting the qualifications for hospice care, many still elect not to use it, Kazanowski said. In hospice surveys, nine out of 10 loved ones say they wish they would have chosen hospice sooner.

I can tell you this: Dad loved the extra attention that he had on hospice, and he has continued to decline since its removal two weeks ago.

This adorable old guy is my dad. And I may never see him again. Today I tell you why.

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Editor’s note: This piece originally was published July 14, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission from Healthline (many thanks to Healthline). The incident reported here came around the one-year anniversary of an attempted homicide (that’s my definition, it still was being investigated by police as an assault last I knew) that I survived the last time I ever took a drink. It left me with a PTSD diagnosis regardless, and such behavior as what is described here is not uncommon for people with PTSD around the time of anniversary dates because they serve as triggers.

 The facility never filed formal paperwork to trespass me despite what I originally reported (they simply had a high-powered Chicago lawyer send me two threatening letters saying they had), but I was told by a judge to “keep my distance” anyway. And I trusted her. I appeared before the judge because the wellness director of the facility filed a no-contact order against me (facilities routinely take such measures when they have a demanding advocate for a resident…I heard from people not only from around the U.S., but around the world when I wrote this). The no-contact order was dismissed and I represented myself (pro se).

 I’ve been told by several attorneys that I have a solid case against this facility, but I’m not sure I have the energy left to fight. I’m glad I have attorneys willing to take the case, as it is affirming regardless.

 I’m still fighting my brother just to get the inheritance dad left me in a simple “share and share alike” will for which there should be no confusion. What a never-ending nightmare that has cost me $5,000 in attorney fees thus far! To think it continues even 15 months after dad has been laid to rest. But I’m glad he’s resting, and I’m glad I have maintained my sobriety, I am grateful for a great career and for my self-respect back.

Still, Never. Forget. What happened on this day. I never reported it at the time, but this is what led to my being taken to the Rock Island County Jail, held on no charges at all, stripped naked and emotionally tortured for two days. To think that Strategic Behavioral Health recently was denied a license for a psychiatric hospital in the Quad-Cities! What happened to me is not at all unusual. Even the Scott County Sheriff testified on behalf of Strategic Behavioral Health for the need for this facility. The Rock Island County Sheriff, meanwhile, is married to Congresswoman Cheri Bustos, former executive for UnityPoint Trinity/Robert Young, which opposed the construction of the Strategic Behavioral Health facility along with Ken Croken on behalf of Genesis Medical Center, Davenport. Genesis and UnityPoint monopolize the market for psychiatric beds in the Quad-Cities.

 This piece had almost 18,000 page views on Healthline Contributors as of last month. Thank you for allowing me to share my story.

By David Heitz

This adorable old guy is my dad. And I may never see him again.

That’s because his assisted-living facility criminally trespassed me a little more than two months ago. This occurred after I reported an intruder while I was there – someone who I recognized as a “bad guy” from my past, whether right or wrong. When they laughed at me and discredited me when I made the report, I started yelling and giving them a piece of my mind, as I admittedly had done before.

I’m very protective of my dad. And they know that, because I would show up at the facility once, twice, sometimes three times a day, at all hours, to make sure he was being properly cared for. That’s the only way to know for sure whether a loved one in a facility is getting the care they are paying outrageous sums for. Any dedicated caregiver will tell you this is absolutely true.

I would walk in on the weekends and see residents sprawled out on the floor while the CNAs were downstairs, on their phones, fighting amongst themselves, or eating candy. On the weekends, it was an absolute free-for-all. Once, a resident and their loved one became locked in an apartment due to the door malfunctioning. Nobody answered when the emergency cord was pulled. Nobody answered the phone at the front desk. Nobody answered calls for help. That person removed their loved one from the facility, as have many others in recent months.

In the first threatening letter the facility’s Chicago law firm sent, they stated I had premeditated an attack of some sort, calling the police and the front desk of the facility before arriving. A simple review of the 911 tape of my call to the police department will prove that I called because I thought my life was in danger. My life had been threatened a couple of days prior to this visit, and I had been on edge. I thought I saw other “bad guys” while walking to the facility from the bus stop, so I called both the police and the front desk of the facility to make sure I got in safely. There’s a perfectly good reason why I thought I was in danger – that also is easily verifiable – and I am not “crazy.”

I’m not the power of attorney. As the guy not writing the checks from my dad’s account, I have been laughed at, discredited and disrespected ever since my dad’s facility was sold to one of the largest assisted-living chains in America. A handful of the CNAs, particularly those working on the weekends, have been anything but professional. They get by with … anything they want. And they know it.

From day one, when the new executive director was put into place, she painted me as mentally ill. Her latest slander against me came after I sent the local elder ombudsman to dad’s facility to check on his welfare since I have been unable to see him since May 4. A month prior, dad had landed in the emergency room, a deep gash to his face. Dad reported to the doc, the hospice social worker and myself that an employee at the facility had struck him. My dad repeatedly has alleged that one employee in particular, who struts around the place threatening other employees and disrespecting residents and their loved ones, has hurt him repeatedly. I have seen this employee be rough with other residents and be insubordinate to her superiors. When I report it, I am laughed at and discredited by the executive director, who is almost never there.

So, as I was covering the White House Conference on Aging yesterday, I received a second threatening letter from the Chicago law firm of the facility. It states: “(Facility) is advising you that it will not allow anyone sent by you or on your behalf to enter upon the premises of (facility) at any time. All visitors are being screened for this purpose, in order to maintain the safety and well-being of residents, visitors and staff. If someone comes on your behalf or at your request to (facility) that person or those persons will not be permitted entrance. In addition, no mail, packages, or other items sent to (facility) by you, on your behalf or at your request, will be accepted.”

This is called isolation. They have removed his advocate and are isolating him. Classic, classic elder abuse. I am one of the most gentle guys you could ever meet. I am 14 moths sober. I have God in my life. Everyone who knows me knows this.

Why do I write this? Because this sort of thing is being replicated coast to coast. I’m not one to roll over.

Elder care in America is a disgrace. When I met Joan Lunden last year after I interviewed her for this Healthline news story, I vowed to be an advocate for elderly people. I meant it.

Saturdays with dad – still making memories

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This article originally was published Feb. 3, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission. My dad died less than seven months after this was written.

By David Heitz

When dad first entered the memory care facility two years ago come July, I remember having a conversation with the director that always has stuck with me.

She explained then that when a parent has a progressive illness with dementia, we lose them twice. We lose them when they’re no longer able to communicate, and then of course we lose them when they die.

I knew she was speaking truth when she told me this, but I sort of shrugged it off as “after-school special talk.” That’s my term for the things people tell you about losing a loved one with dementia that, yeah, you’ve heard it all before, you hope it doesn’t apply in your case, and sometimes it’s just best to mind your own business.

But some things, like that piece of advice she gave me, are worth listening to. Other words of wisdom that have proven true? “Join a support group, you’ll feel better” and “you really need to remember to take care of yourself.”

Even though I’ve really been down in the dumps as it relates to the progression of dad’s illness, I wanted to write a column today talking about good memories with dad. I’m hoping it makes me feel better, because I really do feel like I’ve already lost dad that first time, as the director of dad’s facility predicted. Writing this column each month helps me come to terms with it all, and for that I am so grateful.

Dad still talks now and then, but very little, and nothing makes any sense at all. Soon I know even these few sentences per visit will become cherished memories.

Here’s another important piece of advice: When a loved one goes into a facility, there’s no reason at all to stop making memories.

Just last week, dad pointed to a row of wheelchairs next to the television in the great room of his facility and said, “Take a picture of all those hot rods lined up over there.” That one went over pretty well on Facebook.

Having Fun While Making Fun of Milan

So last night I began thinking about dad and special moments with him that stick out. They always were on Saturdays. I think every Saturday until the end of my days I’ll think about my dad.

When I was very young, we would go on Saturday mornings to visit one of his two best friends, Jack Long or Dave Guldenzopf. They both lived in the nearby village of Milan, and going to Milan always excited me for whatever reason.

Even though Milan borders my town of Rock Island, Ill., it always seemed like another world to me. You have to cross two little bridges over the Rock River to get there from Rock Island. When you cross the bridge, there’s a power dam with a little waterfall off to your left. To a little kid it’s just the neatest thing ever to look at the waterfall when you’re crossing the Milan bridges.

Back in those days, when you entered the village of Milan the first thing you’d see was a Western store with a large, spinning horse atop its sign. There were lots of seedy looking bars downtown, too. Honestly, to me it looked like the set of a Western at Universal Studios Hollywood.

Dad liked to make fun of Milan. It’s terrible, but I have good memories of hearing dad’s Milan jokes. Even until recently, we would giggle when he would talk about Milan.

(Disclaimer: Milan has since grown up and boasts some of the most beautiful residential neighborhoods in our region: a stunning city hall, robust economic growth and lots of other wonderful things! So my apologies to Milan!)

Dad always was in a good mood when we would visit his friends in Milan. It seemed like a reprieve from work and married life for him, at least for a morning or an afternoon.

Honestly, he seemed like a different person during those Saturday trips to Milan, and looking back I can only imagine home life was as miserable for him as it was for the rest of us. Other than that, dad seldom went anywhere. Keep in mind he received disability retirement at 43, so he led a pretty boring life.

Sadly, Jack and Dave both passed quite a long time ago. Dad hasn’t been able to visit either of them for many years.

Prior to taking me with him to see Jack or Dave on a Saturday, I know he used to spend Saturdays visiting his dad. I don’t remember my Grandpa Raymond T. Heitz the first (now there are four, maybe five, who knows) because I was only 3 when he died.

But my dad, who like so many people with dementia like to tell you the same thing 10 million times over, spoke many times through the years about enjoying his Saturday visits with his dad. Those were special memories for him.

Free Lunches at Coney Island and Mr. Quick’s

Saturdays weren’t just about seeing Jack or Dave. Usually it meant a free lunch, too.

My dad was a penny-pincher, and seldom did we eat out unless my mother insisted on it (and who am I kidding? she did insist on it quite a bit). So when on a Saturday we would go to Mr. Quick’s or Harold’s Coney Island, it was a huge treat.

I remember two things about Mr. Quick’s and Harold’s Coney Island. Mr. Quick’s had a tile mosaic counter that I thought was just so, so cool. And Harold’s Coney Island? I remember Harold, the little old guy who ran the place (not super old, but older than my dad at the time). He was very quiet and very regular guy-ish. No matter what anyone at the counter would say, he’d just sort of smile and nod, then go back to cooking the hot dogs. The guy really never said much, but I thought he was famous. His name was on the sign outside Coney Island, after all!

And sometimes around here when people talk, smiling and nodding is simply a good idea. He was a smart man.

Fast-forward to before dad moved into the facility. I had the pleasure of making memories with him for one year in this house, the house he and my mother bought together in 1963 (and now I own the house). She had him evicted from the home in 1984 (Order of Protection) prior to divorcing him the second time. I moved out shortly thereafter, moving in with a cousin and paying room and board as a high school senior on my part-time newspaper salary.

When mom died in 1995, neither dad nor I had an interest in buying the house. My older brother already had his own house by then. So we sold it.

And in what undoubtedly has been labeled a dementia twist by some, dad found out it was for sale in 2012 and bought it again.  The year we spent together here was special beyond words.

 Facility Tales: The Good, the Bad, and the Ugly

Back to when the time comes for a nursing home or assisted living. The best advice I can give anyone is to NOT stop making memories once they go in there. It only will make life unpleasant for both of you.

For starters, let me just tell you surprise visits are a necessary part of being your loved one’s advocate. You need to know what’s going on, and sometimes you may not always be thrilled with what you see. But it can’t be addressed if you don’t know it’s happening.

But far more importantly, you only are cheating yourself by staying away from a loved one when things begin to become uncomfortable. Going along with the strange things they say and maintaining as much of a sense of normalcy as possible, I think, is key to getting through this – for both the loved one and the patient.

If you’ve got a sense of humor, facilities are just plain fun at times. I wrote a little bit about that in my first column about dad, “My Dad: Class Clown of His Memory Care Community.”

Believe me, I could write a book: “Facility Tales – The Good, the Bad, and the Ugly.” And I still might. But for the most part, the controlled environment of assisted living allows for some tender moments during the sunset of life that I do not believe otherwise would be possible due to the stress of caregiving.

So when they go into the memory care facility, keep making memories. That’s the whole point.

Still full of life, breast cancer took mom 22 years ago come March

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This piece originally was published March 6, 2015, the day before the 20th anniversary of my mother’s death to breast cancer. The Healthline Contributors site has now gone dark, but Healthline graciously has given me permission to reprint this piece on my own website.

By David Heitz

Twenty years ago Saturday I lost my beautiful mother to breast cancer. She was only 53 years old – my brother’s age now. I was 24.

Now I’m losing my dad to a rare brain disease, although he has lived to a very ripe old age of 76. Entering his 14th month of hospice, I have been so caught up in the emotional rollercoaster of losing him that I haven’t had a lot of time to reflect on this major anniversary of Mom’s death. But it is a perpetual state of reflection, as I am living now in the very house she died in March 7, 1995.

So instead of going on and on, I’d like to repost this column that was published March 9, 1995, in the Orange, Calif. Independent. I was working as city editor of the Independent, owned by California Community News, which was a division of Times Mirror. The newspaper was inserted weekly into the Los Angeles Times in Orange, Villa Park and Anaheim Hills.

The column was published again a year later in the Glendale News Press, when I was managing editor of that daily, also owned by and delivered with the Times. The column received an Award of Excellence in 1996 by the Greater Los Angeles Press Club at the Southern California Journalism Awards.

While so many advances have been made in cancer research, it remains a frightening disease that touches so many lives on such a personal level, people I know and love, all the time.

This is in memory of my mother, Barbara Fordham Heitz.

“Until her last breath, mom will keep laughing”

I’m convinced my mom is going to die laughing.

I sat with her the past two weeks and watched her body slowly give up to cancer. We witnessed a painfully unthinkable dying process, something even the darkest minds in Hollywood probably could never dream up. And they certainly would leave out the laughter.

For better or worse, her mind is unaffected by the disease, and she hasn’t lost her sense of humor.

To the astonishment of doctors, nurses and family members, mom is still alive as I write this column. The menacing cancer tumors have strangled her colon, liver and apparently her kidneys, too. She literally is filling with fluids like a balloon attached to a garden hose.

When she began to hemorrhage through her G tube (a hose that drains the stomach), she watched nonchalantly as my brother tried to siphon out the blood clots with a device that resembles a turkey baster. “Get out of there, you little hussies,” she called to the clots.

When some of my younger cousins questioned her coloration, baldness and frail body, she let them believe she was in labor.

When I presented her with a helium-filled smiley face balloon, she declared with her own smile: “It is more jaundiced than I am.”

When she had what can only be described as a near-death experience, and the room became dark to her in the middle of a sunny afternoon, she began to laugh uncontrollably. Her significant other guessed she must have been playing a joke on God.

If you don’t believe laughter is the best medicine, you’re wrong. Dead wrong.

When death comes for a terminally ill cancer patient like my mother, there’s no room for tears. Those were shed 15 years ago, when a doctor interrupted her contagious giggle with three horrifying words: “You have cancer.”

How Joan Lunden has inspired me to get serious about elder advocacy

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This piece originally was written April 21, 2015, for Healthline Contributors. That site is going dark, so this piece is reprinted with permission here (many thanks to Healthline for the heads up and the permission to reprint). My father’s assisted living facility had just changed hands when this was written, and things took a severe nosedive shortly thereafter. I urge everyone to attempt to care for their loved one at home if possible. I realize that sometimes it is not.

By David Heitz

I met Joan Lunden face to face Friday!

I attended a meet-and-greet fundraiser after she spoke to an enthusiastic crowd at the RiverCenter/Adler Theatre in Davenport, Iowa. Both events raised money for Gilda’s Club of the Quad-Cities – the community in which I live – and were sponsored by Genesis Cancer Institute.

When I heard that Joan was coming to my community, I knew I just had to meet her. A publicist for Joan reached out to me last September and offered me an interview with the legendary television newswoman. Just days before I interviewed Joan for this piece on her work advocating for quality senior living, she revealed on “Today” and her alma mater “Good Morning America” that she has breast cancer.

I thought, “Why would someone as famous as Joan Lunden work so hard during a time like this?”

The explanation she gave Friday keeps playing over and over in my head. “I realized, ‘Joan, you have this amazing platform after being in people’s living rooms and bedrooms for so many years,’” she told one news reporter. “You can either step up, or not.”

so understand what she means. While I can’t relate to the fear or despair that can come with a cancer diagnosis (although I did lose my mom to breast cancer 20 years ago last month), I can relate to the fear and self-pity associated with having a parent lose their mind before your very eyes.

The issue I spoke with Joan about for my story last October – preparing for the possibility that a loved one may have to move into an assisted living facility – could not be more personal to me. Like so many Americans my age, Dad’s dementia came on sort of suddenly in terms of when it got to be more than I could handle. I had checked in on him for many years, and lived with him for one year. When it became too much and I dialed 911 two years ago, the drama and anguish that followed for several months afterward became more than I could bear. While my dad ended up getting outstanding care, and continues to get it today, it has not been without struggle – lots and lots and lots of struggle on my behalf as his advocate.

At one point, managing the situation became more than I could handle. I cried out on social media in a drunken rage about some of the horrible things that were going on as it related to Dad’s dementia, my concerns about the quality of the care he was getting, and even some of my personal relationships with family and friends.

The day after the explosive, blunt posts, I woke up. Like Joan, I thought to myself: “Everyone is watching you. You’re an intelligent person. Are you going to feel sorry for yourself?”

And, in my case, drink myself to death? Or was I going to get sober, step up to the plate and be my dad’s advocate?

I chose the latter. The day after Memorial Day marks one year since I put down the bottle for good. And while I may not be famous like Joan, I do think it’s fair to say I have a way of telling interesting stories, as well as access to some great platforms like Healthline.

So while talking about Dad’s dementia is tough, I’m going to do what Joan has done. I plan to pour even more of myself into issues related to elder advocacy and helping others prepare for Mom and Dad possibly needing to go into “the place” someday. In addition to Healthline, I hope to soon share my experiences about being Dad’s caregiver with even more sites and publications.

How do you know Mom has dementia and isn’t just forgetful? How can you be sure Dad is getting good care at the memory-care facility? What are some warning signs that Mom isn’t in the right place for her? What do you need to know about signing contracts when choosing a place for your parent? What should you think about when choosing a power of attorney? When a parent with dementia goes on hospice, what does that mean, exactly?

Believe me, it’s not the same as putting a parent dying of cancer on hospice, heaven forbid. There are lots of important differences. And a few shocking things everyone needs to be aware of.

I have all of that information, and it’s time I start sharing it. On top of my personal experience (and battle scars), I’ve become a bit of an expert on the topic of elder care myself after talking to so many prominent national authorities like Joan. I’ve spoken with U.S. Assistant Secretary of Aging Kathy Greenlee about elder abuse being a growing national problem. I’ve interviewed former ’70s pinup model and television bombshell Loni Anderson about caring for her parents with COPD. I’ve reported on how corporate America needs to acknowledge that people caring for elderly parents are the new “working moms.” I’ve told the story of how caregivers save their loved ones and government-funded health programs billions of dollars every year. And just last month I reported that home-care workers for the elderly are living in poverty.

As a journalist, I’ve always thought, How can you expect others to share if you don’t share yourself?

“When you’ve got such a platform, you can either step up to the plate, or not.”

Joan said it again at the meet-and-greet.

I’m stepping up, Joan. Thanks for being an inspiration.

PBS Special: No Help Caring For Your Elderly Parents Until They’re Broke

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This piece originally was published April 26, 2015, on Healthline Contributors. That site no longer is live. Reprinted here with permission.

By David Heitz

Think your elderly parent won’t end up going completely broke before they die? Think again. It’s the reality facing a growing number of American families.

Maybe people finally will listen when Meryl Streep narrates “Caring for Mom & Dad” (#CaringForMomAndDad) airing May 7 on PBS. I just finished screening the documentary. Before sitting down to write this, I wiped away some tears – indeed, tears of affirmation – and took a long walk to work off some suppressed anger. Writing about these things never is easy.

You know what appears to be even harder? Hearing the blunt truth from someone like myself who is going (and hopefully growing) through it.

It’s really quite simple. Modern science has made it possible for people to live longer than ever before. While doctors can seemingly work miracles these days to keep a person’s body going, there isn’t much they can do for the mind when it starts to go.

And nobody is going to help you or your parent financially when your parent becomes unable to care for himself until he is broke. As in zero dollars. There is no help until the point your parent becomes penniless and qualifies for Medicaid.

Heaven forbid you find yourself in a situation where you’re not sure how to go about caring for your parent, but if it happens, I suggest not sharing too much on social media. People will give you advice that they pull right out of their behinds. Everyone’s an expert, and most people have no idea at all what they’re talking about. There are scams galore. There is no easy fix to this. You or your parent either pay for your parent’s care until they are totally broke, or you do it yourself along with the generous help of others. And good luck with that.

This is why you need to watch “Caring for Mom & Dad” May 7 on PBS. Check your local listings. If this trailer doesn’t grab your attention, nothing will – until you get that first bill from mom or dad’s facility. There also are wonderful tips and resources on the “Caring for Mom & Dad” site.

My Caregiving Story And the Path I Chose

I moved back to Illinois from Southern California in 2002. My brother already had placed my father (then 63) in a facility. Since I returned ravaged by crystal meth, it was easy to talk about what a mess David was and how the real reason he came home was to get help. From day one nobody really believed I came back to help my dad as well as myself. And that’s fine. At this point the proof is in the pudding.

When I came home, my brother took dad out of the facility and I assumed the caregiving role. Dad paid me $12 per day and also paid my $400 per month rent for many years. In exchange, I checked on him a few times a day and ran occasional errands. The role escalated through the years to me eventually being a live-in caregiver for one year.

I immediately was hired by a local newspaper when I moved back. It didn’t work out. It ended with a separation agreement. I cried at work a lot and they didn’t like it I guess.

I was unemployed for a couple of years, and during that time I spent quite a bit of time with my dad. I really grew to love the man I once despised. Dad seemed to improve after my first job ended and I began to spend more time with him. But my first go-round at freelancing wasn’t as lucrative as it is now, and after a few years, I yearned to go back to work.

So I went to work for another local newspaper a couple of years later. It was OK for maybe two or three years. But as my attention turned from dad, he got worse. He would call work confused. I would go to his apartment on my lunch hour and he wouldn’t make a whole lot of sense. I would go back to work really stressed out most days. I’d bolt to the tavern from work every day at 4 p.m. when the tavern opened.

To make a long story short, work got tired of hearing about how stressed out I was caring for dad. I got tired of what I felt was a lack of understanding on their part. Substance abuse problem and all, I quit in November 2011. (I am one year sober in two weeks.)

 Reality Check: Caring for Dad Means No Career for You

“Caring for Mom & Dad” offers a glimpse into the lives of people like myself. People who tried to care for their parent so they could live independently as long as possible. Nobody wants to put their parent into a facility. The $4,000 to $8,000 per month is no fun for anyone either.

In the documentary, journalist Jane Gross explains how she and her brother pondered how mom had blown through $500,000 – her entire life savings – in four years. They didn’t even know their mom had $500,000 to spend. They joked she must have robbed a bank and they never knew about it.

The documentary also tells the story of two siblings who fought tooth and nail before finally seeking help. The sibling that controlled mom’s money would tell the one doing the hands-on caregiving (and by no means am I minimizing the role of managing finances) that she didn’t need any of her mom’s money for her own bills. He felt she needed to care for her mom out of a sense of duty.

But that sibling, like myself, wondered how she could support herself. What if this goes on forever? Will she not work during the prime of her career, during her prime earning years?

Many do make that sacrifice. I chose not to. Not only because I want a life, a future and to rebuild my career, but because I am not qualified to care for my dad. I don’t believe that any one person outside of a controlled facility would be in my dad’s case. It takes more than one person. You can learn about my dad’s frontotemporal dementia by clicking here.

Ignore the Misinformation on Social Media from Non-Experts

You will hear over and over, “You can get paid from the government to care for your parent!” Yes, if they are penniless and qualify for Medicaid. So don’t even listen to those people or any of the other bad advice that is out there, unless indeed your parent is totally broke. Most of our parents aren’t totally broke going into this. Don’t try to explain it to people who think they know everything. The know-it-alls have a rude awakening coming.

And don’t expect corporate America to be understanding while you care for mom or dad. Target is one exception. You can find out more about that in the movie.

While many managers in corporate America post delightful notes such as: “So and so is home caring for sick baby … we wish her all the best!” on online office schedules when staffers call in for that reason (although I realize it’s even rare these days that employees get cut a break for that), when you tell them you were late because you had to clean up dad’s poo?

“David, we need you here,” I was repeatedly told by both employers with a stern frown, even after lots and lots of “family first” lip service. That doesn’t last long and it’s not real.

There are ways this can be fixed. For example, in one southern Ohio county, voters approved a tax levy that funds services for the elderly so they can stay in their homes a little longer. But I’m skeptical. In my Illinois county, voters won’t even approve levies so that children can learn in modern schools. If they don’t care about their kids, I don’t think they’re going to care about the elderly.

Wake up, folks. You can watch this documentary or not. Meryl and I have both warned you of what’s coming.

Check out David Heitz’s news stories about caregiving such as “Caregivers are the New Working Moms,” “Millions of Caregivers Offer Billions in Support” and more at Healthline News.

 

Why FTD is so hard to talk about – my dad’s story

 

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Originally published Jan. 5, 2015 on Healthline Contributors. Reprinted with permission. This piece had more than 20,000 page views on Healthline Contributors as of Nov. 1, 2016. My dad died in September 2015.

My dad has a lot of difficulty getting the words out. I’m having a problem getting the words out, too.

A neurologist diagnosed my dad with frontotemporal dementia, also known as FTD, or Pick’s disease, a year ago. Shortly after that he was placed on hospice care in the memory care community, where he already had been living since July 2013.

FTD occurs when the frontal lobes of the brain begin to shrink. Little is known about what causes this, but people who have it often have an abnormal amount of a certain type of protein called tau in the brain cells.

When the lobes begin to shrink, it impairs what is called “executive function.” A person with FTD cannot understand how to even begin a task, even if they know what the end result is.

I’ll give you an example: I went to see Dad the other day, and the hospice worker was down in my father’s apartment preparing him to go upstairs to the great room. So I went upstairs and waited so they could do their thing. I know this is not an easy daily task for them. If I’m there, dad screams, shakes his fist, etc. Honestly, sometimes I’m amazed how they do it. And so grateful.

Soon the elevator doors opened, and the hospice worker wheeled out Dad. He had this extremely strange look on his face (see photo with story). I asked him what was wrong, but he would not respond. This happens a lot with people with FTD. Sometimes they don’t speak. In end stages they usually don’t speak at all. The hospice worker told me he got mad at her while she was brushing his teeth.

So for 25 minutes I sat with him in the dining room. He had this sullen look on his face and would not speak at all. I was very upset. Finally, something occurred to me. I said, “Dad, is there something in your mouth?” He just looked. I handed him a cup and said, “Dad, please spit out whatever is in your mouth.” I showed him how to spit.

And he spit out the toothpaste.

He had forgotten how to spit out the toothpaste. This is executive function.

I, on the other hand, am having a tough time spitting out the words, because when you write about your experiences with this disease, you want to be real, but also diplomatic. Let’s put it this way. FTD has a way over time of creating hurtful feelings among networks of people. By the time things get really bad, or to a crisis situation, the hurt can explode due to a lack of understanding about the disease. Like throwing onion rings into the fryer.

 What is FTD?

Here’s a little bit of background about FTD that you can find right here at Healthline.com. A link to this information is below.

There is no cure or treatment for FTD. One of the huge problems is that FTD isn’t always easy to diagnose. Symptoms can develop slowly over time, or onset and death can come within two years of diagnosis, or less. My dad’s symptoms very much developed over time, and only now do all of the pieces fit into something that has puzzled all of us for many years.

There isn’t a test for FTD. Neurologists make determinations based on a patient’s medical history, interviews with family members, magnetic resonance imaging (MRI), computed tomography (CT) scan and position emission topography (PET) scan. The imaging techniques help a doctor rule out other problems such as tumors or stroke. They don’t necessarily confirm a diagnosis of FTD.

My dad landed in a facility in 2001 with symptoms sort of similar to what’s going on now. At that time I moved back to the Quad-Cities from Los Angeles, and he was taken out of the facility and rebounded. He did much, much better for several years before beginning to go downhill again in 2006 or 2007.

My dad doesn’t have Alzheimer’s disease, but that was what doctors initially thought. Even now when people ask if he has AD I sometimes just go along with it and say “yes” because I don’t want to bother explaining FTD. But those of us going through this must explain it.

FTD is different from Alzheimer’s in that it doesn’t always affect older adults, it doesn’t always impact memory the way Alzheimer’s does, and it often kills a person much more quickly. So Dad initially was diagnosed with Alzheimer’s. Talk about a disease that carries stigma. I couldn’t even say it in the presence of some family members. We referred to it as the “A word.”

You’ll find that when someone is diagnosed with dementia, the layers of denial that others have wrapped themselves in can be many layers thick. Again, like a stinky onion.

With FTD, there’s not a lot of stigma because it’s not something you hear about a whole lot. Most people don’t even know what you’re talking about when you say FTD, I’ve found.

Drama in All its Ugly Forms

People often joke about the amount of drama I’ve always had in my life, and I’ll admit to an extent to being a “drama queen.” But people who live with someone who has FTD will tell you the disease is all about drama.

It’s common for patients to display inappropriate outbursts. There is no couth filter on a patient with FTD. Racial slurs, sexual aggression and even violence are possible. The stress placed on a family dynamic can be insurmountable. Patients with advanced FTD usually require 24-hour care in a facility at some point. It’s truly more than one person can handle, I firmly believe.

In my FTD support group, I’ve heard a few stories of spouses who get divorced and then remarry. This struck me because my parents did the same thing. In a recent program about FTD on the Discovery Network, a woman talked about remarrying her husband after he explained he knew something was wrong with him. He needed her, he said, and she felt bad for him.

My parents remarried just weeks after my dad was approved for Social Security disability. He came back from the renowned Mayo Clinic diagnosed with a psychiatric problem (but not FTD … in fact, it was a rather obscure diagnosis). This is when he was in his early 40s. Today he is 76.

I’ll spare my family the embarrassment of sharing the details, but we had lots of fighting in our house through the years. Even the kind where the police are called. I hear stories every day in my FTD support groups that are replays of what my own family went through, right down to children sometimes being afraid of their parents with FTD. It’s heartbreaking.

Tick-Tock: My Dad’s FTD Timeline

What’s even more heartbreaking is watching a person with FTD attempt to hold on to their dignity as the disease slowly destroys them. My dad has been incontinent nearly two years and now is unable to walk or even stand without help. He still speaks, but it’s starting to be less and less. Some days he can feed himself pretty well; other days he has a lot of difficulty.

I already had written the first paragraph of this column – about dad not being able to get the words out – when on Friday he blurted out, “I can’t make the words anymore!” after stuttering a long time while trying to tell me something he obviously thought was important.

During the past couple of years dad’s FTD has progressed to that. It began with a sharp downturn that began a few years ago. Among the things that were happening:

*  A sudden inability to manage his money or use a telephone.

* Sitting in front of Spanish television for hours when he doesn’t speak a word of Spanish.

* Complaining about loud music coming from the church across the street during times of total silence.

* Urinating repeatedly on the bathroom floor.

* Constant falling.

* Filling the coffee decanter three times (or more) when making coffee in the morning, and then letting the coffee drain all over the floor, and eventually down into the basement where I slept.

* Throwing burning cigarettes into the trash can. I put out two fires shortly before he went into the facility.

Prior to all of that, there were symptoms I and everyone else apparently chose to ignore. He would ask the same questions over and over. No matter what you’d say to him, the answer was “Huh?” This is because people with FTD lose the ability to understand language.

I took him to get hearing aids, and the audiologist said there was some minor hearing loss. But even before that, dad’s primary care doctor had told my brother it’s not that your dad can’t hear, he doesn’t understand what you’re saying. When this all went down two years ago, that didn’t make a lot of sense to either of us, which is why I took him to the audiologist anyway. Now it all adds up.

A Time to Forgive, to Forget and to Educate

Before moving in with dad a year before he went into the facility, I’d check on him several times a day. I’d go in the mornings before work and he would say the meanest, nastiest things to me imaginable. He often criticized my work, for which I am very proud. It hurt me deeply, and for many years.

I would go into the office saying horrible things about him. I had no idea he had a rare disease – I just thought he was a mean person who had become even meaner with old age.

The diagnosis, therefore, was a game-changer. I’m sure he did send my mother over the edge (she ended up divorcing him a second time before dying of breast cancer in 1995). And I went through an initial phase of extreme guilt after his diagnosis. I frequently screamed right back at him when he would treat me so poorly.

And there’s so much more to this story that I’m just going to leave out. He’s been through enough. We’ve all been through enough.

People who live with FTD find themselves constantly pointing fingers – and having fingers pointed at them. Instead of pointing fingers, maybe we all should at least find solace in the validation of the diagnosis. The pain so many of us have endured is in fact no one’s fault – above all, not the patient’s.

Read my Healthline News story on the NIH funneling dollars toward FTD research by clicking here.

First year without dad: When it’s down to just you, you better like you. Thank God I do.

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Dad died a year ago today. For sure it has been the fastest year of my life.

But as I sat at the cemetery bawling yesterday, only then did it really hit me – it’s just me now.

And I mean that in every sense of the word. My dad was my entire life for so long – since the day I moved back to the Quad-Cities in 2002. I made several trips a day to his apartment for many years before moving in with him. And of course I also made several trips per day to the assorted substandard facilities he lived in in his final years, except for 108 days when one of them locked me out.

The void in my life is even bigger than I could have guessed. When you surround yourself with alcoholics and addicts, nobody cares when hard times come. They don’t. They really don’t. If you’re an alcoholic or an addict, you’ll find that out eventually. If you’re an alcoholic or an addict, you know what really matters is the bump, the shot, the tall boy.

“Yeah, yeah, so-and-so’s dad’s died. Hey, let’s get some ding-ding!”

I used to say it myself.

The bar people were gone pretty much from the day I moved in with dad. When he went into a facility, that’s all she wrote.

Thank God they left. It made sobriety easier. I remember once, my friend Scott’s grandma died. She was 100 years old, maybe older. He loved her so much.

We went out that night, to the bar. None of his “friends” showed him any compassion at all. It was as if they were incapable. I’ll never forget the look on his face, or the feeling in the pit of my stomach. “Monsters,” I thought. But I still hung around them for free drugs and alcohol. I was an alcoholic and a drug addict.

And of course, when you’re nearly murdered, that tends to make you pretty much not trust anyone anymore. And that turns people away in droves. And I thought about that, too, as I sat at the cemetery, crying to dad as I had so many times before.

When it’s your family who tries to hurt you? That’s the worst hurt there is, I think.

I told dad at least I had raised hell about the substandard elder care in our community, and at least I educated a whole lot of people about his disease. And hey, I got to report undercover from the Rock Island County Jail, held there on no charges at all!

That truly was a blessing, and I’m being completely serious. I remember, when I heard someone cock a gun, and start shooting blanks “click, click, click” … I remember praising God for helping me become sober, for going back to work and helping people with my writing, and for showing my dad that I could be the man he always knew I was.

Most of all, I thanked God for giving me my self-respect back.

And I prepared for the bullet to the head I was certain I was going to take.

“They were f***ing with you,” one healthcare provider told me. “That’s what they do in the Rock Island County Jail. They’re known for it.”

Well, yeah.

But the reason I really thought they were going to kill me was this: I heard one guard, I’ll call him “J.,” say in his classic foghorn voice, “(Blankety Blank) tried to kill him last year, but he woke up on his couch.”

Who did he say that to? A high-ranking politician who was hanging out in the jail. I did not hear her utter a response. But I’ll tell you this: The silence alone was chilling.

I knew the politician and Blankety Blank were an acquaintance, because Blankety Blank boasted to me once or twice that he knew her. But this?

And “J.” feeling chummy enough with her to tell her what “Blankety Blank” allegedly had done? (Through the hands of my cousin and his friends, obviously, if in fact Blankety Blank really did have anything to do with it at all, or if that was just more s@#t talk for me to hear and get upset about)

It was one year prior to that day, at least to the same week, that my cousin and his friends assaulted me, pinned me down, and injected me with a needle. When I woke up, there was a nebulizer in my pocket. Classic (attempted) homicide disguised like an overdose. At least that’s exactly what it looks like to me.

And so very curious that other people who traveled in the same circles I did have indeed died in similar, mysterious ways. “Overdose.” “Suicide.” “Unknown.” “Under investigation.”

I showed my AA sponsor the marks on my arms. He said, “You had the shit beat out of you. Have you had enough?”

Apparently I had because it was the last time I ever took a drink.

And that person “J.” mentioned? Well, he has since been in the news himself for something rather shocking. So now it’s just doubly-triply chilling.

Did I imagine these things? Did I just “hear wrong?” because I was in distress in the jail?

I did dance around naked after all in an attempt to amuse myself. But I remember that. No, that wasn’t “a trip,” that was me using humor to keep going and “stay positive.”

If they find any jail footage at all I’m sure it will be that. The rest will be “missing.”

I suppose I could have imagined the things I heard, but I absolutely don’t believe  for one second that I did. Much of what I heard has since been independently verified. Believe me, I have a big ol’ file.

And it being “all in my head” doesn’t add up by the sheer fact of what history has taught us since, and the fact that I’ve known these people for years and years and knew their voices like the back of my hand. There’s too much detail, too much evidence, too much motive. I think the ones who try to paint me as bonkers are beginning to look guilty themselves, quite frankly.

Somebody knows what happened in there. At least a few people. It only takes one to snitch. I’m counting on that one.

The moral of my story today? I truly believed they were going to kill me in that jail, and the motive (my big mouth) was quite clear and had been for some time. Yet as I prepared and fully expected one of them to walk in and shoot me in the head, I thanked God for having my self-respect back.

That, my friends, is priceless. And for now, worth every lonely moment.

This lady lost her caregiver son because the VA was too slow. Then she died right behind him.

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Some encouraging news published today in JAMA Surgery is coming too late for my next door neighbors.

That’s because Monica, a Scottish immigrant, and her son, Paul, both are now dead. Paul, who was in his early 50s, cared for his mom in the house they rented next door to me. Like myself, Paul clearly had troubles of his own and at times was overwhelmed by his mother, who also had dementia, like my dad, albeit in a much milder form (at least at first). Plus, Monica was about 90 years old.

And even though Paul and I never got along in the beginning, when he began to lose a lot of weight I asked him what was going on. He told me he had not been feeling well but could not get into the VA right away due to long wait times.

Finally, he got in there and they discovered he had a cancerous tumor in his colon. Then they scheduled the surgery – for several weeks out.

By the time they opened Paul up, he was full of cancer. He went into Hope Creek Nursing Home and died a short time later.

His mother, her heart broken that her only child was dead so young, began to exhibit worsening dementia. Daily home care wasn’t enough. She was coaxed from her home by the police (for her own safety), never to return. After a short stint at Galesburg Cottage Hospital (where unruly elderly people are taken from the Quad-Cities to be heavily medicated and made “manageable”) she returned to Hope Creek, and died.

A sad, sad story. She had become a ward of the state after Paul died; the state got every little thing she owned to pay she and Paul’s Hope Creek bills.

The house still has not been rented, and some of her belongings are still there. It’s a big old mess. His death, her death, the fact the landlord still can’t rent the house – all examples of multiple disgraces in the Illinois Quad-Cities elder care system and the state of Illinois in general, too numerous to mention. And to anyone who rolls their eyes at that comment, I say, go right ahead. Maybe you’ll find a brain up there.

But here’s the good news

The study released today in JAMA Surgery shows how reforms put in place at a VA pilot location in Indianapolis drastically reduced delays. Using Richard L. Roudebush Veterans Affairs Medical Center as a test site, “Multidisciplinary teams identified systemic inefficiencies and strategies to improve interdepartmental and patient communication to reduce canceled consultations and cases, diagnostic rework, and no-shows,” according to a JAMA news release. “High-priority triage with enhanced operating room flexibility was instituted to reduce scheduling wait times. General surgery department pilot projects were then implemented mid-fiscal year 2013.”

Wait times were shaved from 33 days in FY2012 to 12 days by FY2014. The number of patients operated on increased from 931 in FY2012 to 1072 in FY2014.

“This study demonstrated a significant reduction in patient wait times for surgical procedures and an improvement in access in the clinical and operative settings when implementing lean processes,” the authors wrote. “The improvement gained was noted over multiple areas and seen during the implementation of new technologies. The changes in the measured outcome categories occurred early, and the differences were sustained across the entire observation period.”

The authors reported that a “systems redesign” involving “personnel, clinicians and surgical staff to reduce systemic inefficiencies” could work throughout the VA.

In an accompanying editorial, Drs. June Ray Juliet and Seth A. Spector of Miami wrote, “Widespread negative media attention targeting patient access and wait times at the U.S. Department of Veterans Affairs institutions has prompted evidence-based reform to improve health care access and delivery.”

There goes that darned media, saving lives again.

“The stakes are high, and process, organization, and infrastructure must be reformed to ensure that health care delivery, research, education, and training proceed at the highest standard,” the editorial concludes. “This crisis provides the private and public sectors with an opportunity to consider lean transformations to expand access, reduce cost, and, most importantly, improve health outcomes and the patient experience.”

Grandma’s fan may be doing her more harm than good

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I remember going to visit my grandma (my mom’s mom) on Sundays. We went every Sunday, like clockwork, to watch “Wonderful World of Disney” and “The Muppet Show.”

Sometimes in the summer, it was insanely hot in grandma’s house. She only had a fan in the window – no air conditioning. My mother would beg her to come stay at our house, but she would refuse.

On top of all of this, grandma only had one lung. Still, she wouldn’t budge, and it always worried my mother deeply during heat waves.

A research letter published today in JAMA shows that electric fan use by elderly people during extreme heat could in fact be harmful. While I personally find it outrageous that every elderly person in America is not furnished with air-conditioning no matter where they are, I realize that some just don’t like it, or they believe they cannot afford the electric bill.  I’m sure many can’t, sadly, but many communities do have air conditioning assistance programs for the elderly, both through the power company to pay the bill, as well as local charities that will provide refurbished air conditioners to elderly people who cannot afford to buy one.

The study admittedly was tiny – three men and six women, average age of 68.

There’s a reason why the sample was small. Wearing  only shorts (men) or shorts and a sports bra (women), the volunteers sat in a 108-degree chamber. After 30 minutes of humidity at 30 percent, the humidity went up 2 percent every five minutes until it reached 70 percent. Such conditions are not uncommon in summers in the Midwestern and Southern states, or even in the Northeast. The study was conducted by University of Texas Southwestern Medical Center, Dallas.

Conventional wisdom in the medical community has been to discourage fan use at temperatures above 95 degrees, “due to theoretical risks of accelerated heat gain and dehydration,” the authors wrote. “However, empirical data to support or refute their use during heat wave conditions are sparse.”

Researchers observed the participants on randomly assigned days with and without a 16-inch fan located about three feet from them. They could not drink any fluids during the experiment. Their heart rates, core temperatures and sweat loss were monitored.

Surprisingly, when the fan was in use, core temperature and heart rate spiked. “Although differences were small, their cumulative effect may become clinically important with fan use during more prolonged heat exposure,” the researchers concluded. “Fan use elevates sweat loss in young adults. This was not observed in elderly adults, suggesting that age-related impairments in sweating capacity possibly limit the effectiveness of electric fans. Overall, this preliminary study indicates that electric fans may be detrimental for attenuating cardiovascular and thermal strain of elderly adults during heat waves.”

Grandma lived down the hill from us, in a housing project known back then as the Arsenal Courts. Originally, the projects were built to house soldiers working at the nearby Rock Island Arsenal during World War II. They were not equipped with even window units.

It was a very dangerous place back then, quite frankly, but grandma was very poor. My grandpa, Grant, died in a car accident when my mom was only 16. Grandma then spent many years in a tuberculosis sanitarium. She never really developed workplace skills as a farm wife, and when her husband died, she became sick with tuberculosis.

As if TB wasn’t bad enough, she also had several bouts of cancer. Grandma suffered many years, but was a devout Christian woman and always maintained a smile. She lived to be 81, my longest living relative next to my dad’s sister, who is 83. My dad came in third (God bless him!) at 77.

At any rate, if you know of an elderly person who just refuses to come out of the heat when it’s uncomfortable even for young people, you might want to share this study with them and see what you can do to help them get an air conditioner, if they will agree to one. A fan just isn’t enough, and is in fact harmful during heat waves, or so at least it appears in this very small (albeit interesting to me) study.