Dementia-friendly America cities and states are changing lives for caregivers

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Editor’s note: This piece originally was published July 26, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission. I will be following this story up very soon, as Dementia Friendly America has made great strides in the past couple of years.

By David Heitz

For people with dementia, Minnesota may be the next best thing to heaven.

That’s because 23 cities in Minnesota are “Dementia Friendly America” (DFA) communities, a private-sector effort that brings together first responders, churches, business owners and local governments to learn about the special needs of people with dementia. Eleven more Minnesota communities are in the process of becoming DFA communities.

The program means people with dementia can stay in their homes longer. And that’s why, to me, the nationwide expansion of the program was some of the best news coming out of the White House Conference on Aging earlier this month. Soon, these communities also will become DFA communities: Tempe, Ariz.; Santa Clara County, Calif.; Denver, Colo.; Prince Georges County, Md.; and Knoxville, Tenn.; and the state of West Virginia.

For families like mine who have a loved one with dementia, this is an answered prayer.

Elderly people with dementia are faced with many well-known challenges – confusion, wandering, an inability to manage their finances, and the like. This makes them incredibly vulnerable.

Putting your life on hold as a caregiver, with little to no help

Their caregivers are faced with challenges, too. How do you care for your parent with dementia while also caring for your children? How do you hold down a job?

Many can’t. We often must quit our jobs. My dad is now in a memory care facility, and hopefully soon a nursing home, where he can get more intensive, appropriate care for his special needs. But those years I struggled to care for him myself, then ultimately quit my job, took a huge toll on my finances, my family and my own health.

In many cities, police, bankers, clergy and others don’t really know how to spot dementia.

Where is the line between “forgetful” and “dementia,” for instance?

“Becoming dementia friendly must be a priority for all of our hometowns in order to remove stigma, enable people with Alzheimer’s to come out of the shadows and engage in their communities, and help families effectively manage all that comes with the critical task of caregiving,” said George Vradenburg, founder of USAgainstAlzheimer’s, in a news release.

USAgainstAlzheimer’s worked closely with DFA to make the expansion of the initiative a reality. “This hometown Dementia Friendly America initiative sends a message to American families experiencing dementia: ‘You are not alone, we are your neighbors, we care about you, and we want to help.’”

When crisis hits, communities are not prepared

When it comes to just how serious the need is for something like Dementia Friendly America, consider this:

I am just one guy, in one town, who happens to have a platform for writing about my dad’s dementia and my experiences with it. But my family’s story, sadly, is not unique.

When I first moved in with Dad to care for him full-time, one of the first things I noticed was that he would call the bank every morning, confused about his balance. The bankers clearly knew long before I did just how bad dad’s dementia was. But how can they be expected to say anything without training? I’m sure they don’t want to be held liable for violating privacy issues either.

Second, the first time my dad became violent and unmanageable (Dad’s diagnosis is behavioral-variant frontotemporal dementia … his behaviors can be extreme), I called my brother and asked for help. My brother was not interested in helping me. Instead, he called the police, who showed up at my door.

The officer came in and showed extreme compassion. He could see what was going on – Dad was confused, I was in tears, and I was busy trying to clean up the house from several messes Dad had made in his rage. The officer wasn’t sure what to say. “What your brother called about isn’t at all what’s going on here, I can see that,” he said. He looked at me, appearing to be truly touched by the situation, and in the sincerest way suggested that when things like this happen, I go to the church across the street to pray. The church across the street has a “Perpetual Adoration” chapel, which, in theory, is open 24 hours a day. Of course, they can’t always find volunteers to staff it.

I was touched by his advice. Of course, those of us who care for people with dementia know that it gets to a point where we cannot leave our loved ones alone for even 15 minutes.

The police came again after that when I called them unsure about what to do. They told me about the local elder ombudsman, but my calls were never returned. The third time the police came my dad was taken to the emergency room, then a nursing home, and then placed in a memory-care facility, where he has been ever since.

You can read more about my experience with my dad’s horrible, rare disease, FTD, by clicking here.

Why My Neighbor Held Her Dead Cat for Two Days

Then, last Thanksgiving, I encountered another example of the glaring need for communities to be better equipped to handle elderly people with dementia. My next-door neighbor’s cat died. She was alone at the time, as her son, a veteran, had to go to Iowa City for cancer-related surgery. The police showed up at my door and asked if I could help my neighbor get her sick cat to the vet. I said of course, and the cop left.

But my neighbor’s cat was dead. She would not let me take the cat and bury it. She clutched it all weekend. The police came a second time, a third time. The elder ombudsman was called – no response. The officer called and even went to the church across the street – my neighbor’s church, with the chapel of perpetual adoration. No response, even after he reportedly banged on the windows for help.

Then on Monday, the elder ombudsman’s office and some other elder advocates showed up at my neighbor’s home. They coaxed her to give them the cat. These women buried the cat themselves. Then they placed her in a facility until her son came home. I rode the bus to the facility and visited my neighbor while she was there. To this day, it’s obvious she has no recollection of that weekend, which probably is a good thing. (Editor’s note: My neighbor’s son, the veteran who faced long wait times for lifesaving surgery at the VA, died shortly after this was written. His mother, sadly, died right behind him, alone, in a nursing home that ended up with all her worldly possessions to pay the bill, as well as her son’s bill. They both died in the county-owned nursing home, Hope Creek. The state of Illinois has taken so long to resolve all of this that her house still is not available for rent. The owner has gone months, now over a year, without collecting rent). A selfie of my dear neighbor Monica and I is below. She enjoyed sitting in the yard in the sunshine and was a wonderful next-door neighbor.

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More support could have kept dad at home longer

In a perfect world, I may have been able to care for my dad for a longer period in his home, which he’s so incredibly proud of (see photo above) if I had more community support. As for the veteran next door? He’s still battling his own health problems while taking care of his mother. It’s just the two of them, but now they do have home-care workers coming at least three times a day, from what I can tell.

My dad is in a facility, and I’m no longer allowed to see him. You can read about that by clicking here. I’m sure he’d rather be in his house, which he purchased for a second time in 2012 after losing it in 1984 when my mother divorced him. She died of breast cancer in 1995 (you can read my column about that by clicking here), and my brother and I inherited the house and sold it. I wish there was money to have three eight-hour per day registered nurses (or even LPNs) to care for him here.

Click here to go to the Dementia Friendly America home page. It offers an insightful video of why a Dementia Friendly America is needed and more about how it works. The page is under construction and will be updated soon. The Dementia Friendly America even has been taken across the pond to the U.K.

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It’s the mother of all triggers; but it’s my courthouse, too. Why I’m there today

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Update: Court went well today and even seemed a bit amicable. I am ready to move on with my life. I appreciate everyone’s prayers and support during the past several years. God bless all of you for following my work. I hope it helps people. It certainly has been cathartic for me.

For people with PTSD, we must avoid “triggers.”

Triggers are people, places or things that can take us back to the traumatic events, or series of events, that led to our post-traumatic stress to begin with.

It’s why combat soldiers with PTSD don’t much care for fireworks, for example. For people who have been sexually assaulted, it may be the home of their assailant, or a hotel where they were assaulted that serve as a trigger. Simply driving past can immediately “trigger” symptoms of anxiety, fear, and rage.

For me, the Rock Island County Courthouse, pictured here, is the “mother of all triggers.” And I have avoided it entirely for the past 20 months or so, but today I am there, defending my right to what my father has left me in his estate.

I always say that I have “Caregiver PTSD,” and indeed that may be the title of the book I hope to write this year. My PTSD came as the result of several things related to caring for and advocating for my father, including:

A horrifying assault in the basement of my home the last time I ever took a drink, three years ago, this coming Memorial Day weekend. The assault was brought on after I began to post on Facebook that certain people were “murderers” for taking my dad off insulin when he still was eating five meals per day. That not only is inhumane, but it’s an offense a doctor could in theory lose their license over.

I was alerted to dad being taken off his insulin – in fact, I was told that all his meds were DC’d — by the former wellness director of the memory care facility where he lived. This did not jive with what my brother had told me earlier in the day, that the doctor had “doped dad up some more” (prescribed more medications) at the office visit that day.

So, when the memory care facility called to report dad collapsed during lunch and could not immediately be revived, I was suspicious, asked questions, and got answers. Then I downed some booze, massive amounts of booze, and the “murderer” posts began. Not to mention a phone call made to the doctor’s office. Dad was back on insulin the next day.

Read more: When a person with dementia goes on hospice, it doesn’t always mean they’re dying

Someone who I had every reason to trust showed up at my door when I began making the “murderer” posts on Facebook. He then took me to the basement, where the assault took place. This all has been reported to police, is on the books, and there’s a paper trail (or at least there should be) of this entire story.

Read more: Raped in 2007 and assaulted in 2014, I finally put down the bottle

Next, on the one-year anniversary of the above-described assault, when, while visiting my dad at the memory care facility (which had changed ownership since the insulin incident, and now was managed by what I can only describe as a vile and heartless woman), I thought I saw a “bad guy.” I had gone to police just a couple of days prior regarding some “bad guys” when a friend of mine’s body was pulled from the Mississippi River. I was on edge to begin with and thought people were following me on my walk to the facility that day. I even dialed 911 and also called the facility for help on my way there.

It’s not uncommon for people to exhibit paranoia, anxiety and fear around the time of PTSD anniversary dates. Did I “imagine” this guy was a bad guy, when in fact he simply might have been a maintenance man (as he was dressed as such)? I still don’t know the answer to that, and I may never know.

What I do know is that when I reported this “intruder,” the staff laughed at me, discredited me, and I started giving them a very loud piece of my mind. The next thing I knew, I was being stripped naked and thrown into a cell at the Rock Island County jail, a straightjacket thrown in behind me. The jail, staffed by thugs (including employees fired by a local bar for being lazy and/or drunk), mentally tortured me for two whole days while I was held there on no charges at all. That included one of the former bartenders from the tavern I frequented. The other one pretty much kept her mouth shut and answered questions honestly when asked by someone else who, in my opinion, had no business being inside that jail. I don’t care who she is. And I know what I heard.

Read more: Why Amber Ridge Memory Care kept me away from my dad, and how the state of Illinois reunited us

And all of this is very, very, very suspicious and not at all “conspiracy” to those who know the whole story, and by now, that includes many people. Will it all someday just go away? Just blow out to sea?

Returning to the courthouse with a sense of serenity

When I finally was “sprung” from jail by an officer associated with the agency I had relayed the initial “bad guy” information to, I was taken to the hospital (again, a place that forever will be a trigger, and I never will do business with again, even though they “forgave” the portion of my bill which insurance didn’t pay, and even apologized for how I was treated there, which is curious); and two days later, I had to go to the Rock Island County Courthouse and defend myself, pro se, against an order of protection filed by the wellness director of the memory care facility.

Read more: What really happened to me in the Rock Island County Jail? My tell all

Read more: What was the motive for what happened in the jail? My tell all, Part II

Mind you, my dad had nearly bled to death in his room from an unexplained injury two weeks prior to all of this (he told the hospice social worker, the ER doc and myself that he was struck by someone…’He got me!’ he said, and then started crying. Dad had gender dysphasia about three years prior to death (and total dysphasia the final months of his life) so a “he” often meant a “she,” but he frequently told me two workers in particular, one a man and one a woman, were rough with him).

The memory care facility nurse who called me at 5 a.m. was the one who said it appeared he had lie all night on the floor, given the size of the pool of blood, and reported that she herself had just come on duty. Rest assured I know who was on duty before her. Employees past and present have chirped like birdies.

I was hypervigilant every time I set foot in there, like any astute caregiver should be. But especially after that most recent incident, probably the third trip to the ER since he had gone in there 18 months prior. If you don’t police most elder care facilities, your resident gets substandard care. And that’s the truth. Period. Particularly in Rock Island County, where the incredibly incompetent Alternatives for the Older Adult is failing miserably in their assignment to protect our elderly.

So today I find myself at the Rock Island County Courthouse again, this time for a status hearing as it pertains to my father’s estate. By chance, it’s the exact same judge that I stood before for the order of protection, which was dismissed.

I have not seen my brother since a few weeks after my dad died. But my lawyer says it is imperative I attend the hearing or the estate could just drag on for months. It already has been 16 months as it is. And for the record, my brother and I did not end up in court (at least not initially) over a dispute between ourselves, but over a dispute with a third heir. My understanding is that my brother tried to resolve this at the last hearing, but apparently was given some poor advice that foiled this resolution, which I assume would have been amicable to all parties.

So, it will be good to see for my own eyes today what’s really going on, and to tell my side of the story, if asked.

I’m going to walk into that courthouse as if I own it, and with my head held high. As if were on assignment for the Quad-City Times, like the old days. I am going to remain calm and answer any questions the judge may have. And by the grace of God, my father’s estate will be closed, and this horrifying chapter of my life closed with it. (Although life has been bountiful with blessings during this hardship, too – my sobriety, career success, and more self-respect then I ever had had in my life. Nothing worthwhile in life comes easy!)

I have changed banks, grocery stores, restaurants – I rarely do business in Rock Island, where I live, because the odds of running into someone who is a “trigger” is just far too high. This entire county is stocked with extremely dishonest people, many of whom are community leaders and who I have known my entire life, but who I now know to be — well, frauds — to use Mitt Romney’s famed word to describe Donald Trump.

How dad and I reclaimed the family home

I already have reclaimed my family home.

When I bought out my brother’s half of the home when we inherited it when dad died, he asked, “Why would you even want ‘The House of Hell?’”

He called it that with good reason. As kids, the police frequently were at our house. Mom and dad used to beat the crap out of each other. Mom once pinned dad to the floor in the living room and held a steak knife to his carotid artery. I went downstairs screaming and a friend of my brother’s ran upstairs and pulled mom off dad. I often wonder what happened to that guy. I liked him.

My dad did abuse my mother. Mentally, especially. We didn’t know then that he was a very sick man with a rare brain disease that caused him to behave the way he did. What a horrid death he experienced. Pick’s, which you can read more about by clicking here, is a terrible disease.

Dad lost the house to mom in their second divorce in 1984, when mom was given six months to live. She died in 1995. My brother and I inherited the house and sold it; dad bought it again almost 20 years later, five years ago this June.

Shortly after mom had dad evicted from the home via an order of protection, shortly before the divorce, she moved in a man she met at Sweetwater Tap. I didn’t like it. I caused lots of problems.

And then she threw me out.

I was working at least 25 hours per week at the Quad-City Times then, as a junior in high school, and being paid a freelance rate on top of my hourly rate to cover the cities of Milan and Silvis for them. So, for a teenager, I was making good money. I paid my cousin room and board and lived with her my senior year.

Despite everything that happened in this house, it’s mine now. Mine and my dad’s, even though he no longer is with us. I even feel healed about all that happened with mom, even sleeping in the same room where she perished.

So today I reclaim my trauma, I own it, and hopefully, we all move on. Tragic as parts of my life story has been, I lead a very blessed, very privileged life. I cannot forget that. Not today, not ever.

Elder care facilities: Bermuda Triangles for your loved one’s teeth

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This piece originally was published Aug. 23, 2015, for Caregiver Relief. After I was trespassed from seeing my dad for reporting an intruder at his memory care facility in June 2015, his dentures went missing the next day (they were lost most every day and I would conduct my own “shakedown” of his apartment, often finding them under the bed). I have this in writing from an employee of the memory care facility. So, my dad had no teeth there for 108 days. My brother claims the facility’s director told him Five Star Senior Living does not have insurance for such matters, and therefore they refused to replace his teeth. When dad and I were reunited thanks to the great work of the state of Illinois, dad proclaimed, “There’s my friend!” when I walked into the new nursing home. The second thing he did was point to his mouth and say, “Teeth, teeth.” I did manage to get dad to a dentist and have impressions made for new teeth (nothing short of a miracle for someone who has Pick’s) but he was dead two weeks later. I watched him try to gum food in the nursing home where he died for about a week, and when they switched him to a puree diet he quit eating altogether and died. This piece is reprinted here with permission from Caregiver Relief. Special thanks to Diane Carbo.

By David Heitz

We learn at a young age about sock-eating dryers, one of the greatest mysteries of life.

But there’s another Bermuda Triangle out there that caregivers for loved ones with dementia eventually come to know: Nursing homes and assisted living facilities.

Things disappear daily at these places, and while many are quick to blame the employees for theft, that usually is not the case.

With confused residents wandering from room to room, anything is possible. We have to do our parts to make it easier to track down missing items, and I’ll get to that in a minute.

But I’m not going to be an apologist for these places when dentures get lost over, and over, and over again. This, unfortunately, has been the case with my dad.

Dad’s brand new set of uppers were permanently lost six months after he went into a memory care facility in July 2013. They had been lost about half a dozen times prior to that too, but I always found them, sometimes spending an hour or longer in his room conducting my own personal shakedown.

To avoid conflict with my bottom-line, bottom-dollar brother, I ended up bringing dad’s old set of false teeth to the facility more than a year ago, and dad began using those. But that was a bad idea. Dad got new teeth for a reason – the old ones didn’t fit correctly.

Long story short, about a week after dad’s facility trespassed me (you can read all about that here) a CNA tipped me off that the teeth had gone missing again. Time and again, the many workers who kept me in the loop while I was locked out explained that dad’s teeth appeared to be gone for good. And with me gone, there was no around to do a shakedown and look for them.

Finding this wholly inacceptable, I complained to the local elder ombudsman as well as the state about the missing teeth (among other things) back in June. I’ve yet to receive a response from either.

Cutting to the chase, when I was reunited with dad last week after 108 days, he still did not have any teeth. My brother (the POA) and I are unable to have civil communications, but the last text I got from him was that he was “fighting” with the memory care facility about dad’s missing teeth, dad’s missing hearing aids, and two weeks rent ($2,050) they don’t want to refund for the second half of the month of August. He said the director of the facility said not to lose hope, the hearing aids sill may be found.

Hope isn’t going to have anything to do with it

Hope isn’t going to have anything to with it.

Dad’s original set of teeth that were lost the first time should have been on the inventory list upon admission. My brother can, today, call the dentist and have replacement teeth made.

It’s not OK to put dad’s old set, possibly seven years old or older, back into his mouth. And the facility will need to cut a check for dad’s replacement set immediately, as they have insurance for that very purpose. They’re not going to offer you this information readily when this happens to your loved one, but it is fact.

My dad has John Deere insurance and ample funds for a replacement set. So in theory, the new set should be ordered today, and without delay. When I met the social worker the other day at dad’s new facility, one of the first questions she asked was, “Where are his teeth?” It gave me immediate peace of mind to see they are on top of such things and will be monitoring his care like a hawk.

But dad’s teeth problems don’t end there. When he was found in a pool of blood on the lower level of the memory care facility on April 15 of this year, and landed in the emergency room, he suffered a chipped tooth. My dad winces and complains about his mouth incessantly, and has done so since that day. To think he has continued to suffer since April 15 to me is incomprehensible and 100 percent without excuse. In the five days we have been reunited, some of the few words he has spoken have been “I need the dentist,” “my mouth hurts” and “I need a wrench for my mouth.”

It makes me so incredibly upset. Again, dad has John Deere dental insurance and ample funds. He should be able to have a dentist look at his teeth even if we need to pay a dentist to come to the new nursing home. I have no idea whether that is even possible, however.

Most elderly in facilities broke and without dental coverage

But the reality of the situation for most people in nursing homes is this: They don’t have either dental insurance or ample funds. So what are these people to do?

It’s a huge problem. The millions of Americans on Medicare don’t have dental coverage. There are programs in place here and there, and you can click right here to go to the U.S. Department of Health and Human Services Administration on Aging website’s dental page. It lists multiple resources on how to get your loved one dental care.

Good dental care is more than a luxury. To quote from the site, “According to the Centers for Disease Control and Prevention, one-fourth of persons age 65 and older have no remaining teeth. Nearly one-third of older adults have untreated tooth decay. Severe gum disease is associated with chronic disease and severe health conditions including diabetes, heart disease, stroke and respiratory disease.”

I can tell you right now that my dad is embarrassed that he has no teeth, especially as he is trying to make friends in the new nursing home. “Whether caring for natural teeth or dentures, daily oral hygiene can mean older adults will be free of oral pain, can maintain a well-balanced diet, and will enjoy interpersonal relationships and a positive self-image,” the AOA site states.

The poor guy has been sitting in the dining room by himself, which is why I’ve gone up there and had at least one meal with him every day. When I’m not there, an employee has been sitting with him. When old ladies wheel past, my dad lifts his hand and feebly says, “Hi.” Can you imagine what this is like for him? It’s got to be like the first day of high school freshman year in the lunchroom. Not having his teeth is a blow to this little Casanova.

What you can do to help, and when all else fails…

One member of one of my online caregiver support groups offered this very good advice for avoiding the nightmare of lost teeth:

I recommend making sure dentures and hearing aids have names on them. Best place for hearing aids at night are locked in the nursing cart in a labelled container. Dentures should have a labeled container as well.

If your facility does not have a set protocol for managing these items – ask them to create one so that everyone follows the same steps.

Make sure when you bring items in that they are added to your loved one’s personal belongings list. Make sure their name is on everything, even if you are doing the laundry. If you are doing the laundry make sure there is a neat visible sign saying so, either laminated or in plastic. Keep the belonging list updated. Take photos of clothing – it especially helps when trying to locate items.

If dentures repeatedly get lost, and you don’t have the resources to replace them, and the facility is pushing back…raise hell. Period.

“Find out who the local ombudsman reports to and file a written complaint as well as file a written grievance with the state,” suggested one caregiver in my support group. “They need to be aware of this kinds of negligence. Be sure to give a copy of your written complaints to the facility as neglect of patients can cause them to lose their license.”

Adds another member, “Keep repeating your complaints with written copies to everyone. Find out if other families at the same facility also have complaints also and form a group. Bring all the complaints to the administrator. If you continue to get no response, take your evidence to the local news media.”

I don’t mean to incite. But this journey has been an unbelievable nightmare. Negligence in elder care is everywhere you look (and yes, so is quality care, and I have written about that and will continue to do so when I see it). My stories would not be going clickety-click-click if there wasn’t a whole world out there experiencing the same problems as myself. Advocating for a loved one does not make you a troublemaker. Don’t let anyone tell you different.

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.

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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.

Why caregivers for people with dementia often die before the patient themselves

 

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This piece originally was published July 11, 2015, on Healthline Contributors. That site no longer is live, and the article is reprinted with permission here.

By David Heitz

Half of all family members who care for people with dementia die before the patient does, statistics show, or they become seriously ill due to self-neglect. The study was published in 1999 in the Journal of the American Medical Association.

Why? Because caring for someone with dementia is hard work. Due to their illness, people with dementia can be almost impossible to communicate with without the proper training. They need to be watched constantly, like children. And they can become violent.

It’s why so many places that call themselves “memory care” assisted-living communities handle the situation by encouraging family members to ask doctors to heavily sedate the patient. That can be cruel, but sometimes it is necessary in places that are not properly staffed.

Diane Carbo wants to know why developing guidelines for true, standardized dementia care— and financial and respite support for family members who try to care for people with dementia in their homes — isn’t on the agenda for the White House Conference on Aging Monday.

“This is the conference where big public policy changes occur. This is the conference that Social Security and Medicare came out of,” Carbo said. “Paying the family caregiver some kind of stipend to provide care, or at least respite care … we have no funding for respite care in this country at all. The family caregiver is the invisible patient. They are so busy monitoring someone else for 24 hours that they neglect themselves.”

Carbo is a registered nurse with four decades of experience and the founder of Caregiver Relief. She is also the founder of My Vital Alert. My Vital Alert stores all kinds of vital records — medical, dental, even power of attorney and will information — on a pendant, bracelet or card. A provider can tap any of those items with his smartphone and have a patient’s vital information pop right up.

Many families choose to put their loved ones in assisted-living facilities that label themselves “memory care.” What that usually means is locked doors. Period. At best, it means the staff attended a two-week seminar on caring for people with dementia.

There are some true “memory care” communities, but they are few and far between.

“If it’s truly a dementia care unit, the staff would have training that would allow them to handle behaviors,” Carbo said. “You also need behavioral specialists and neuropsychiatrists on staff.”

Instead, they sedate the patient so they won’t become a problem. The patient essentially becomes mentally vegetative.

“There needs to be a totally different approach to handling dementia,” Carbo said. “There are no regulations, no standardized dementia care.”

The plus-90 group is the largest growing demographic by age in the U.S. As that group grows, so do the number of people in the U.S. with dementia.

“Everybody is so worried about a cure … I know that we want a cure, I get that,” Carbo said. “But the issues that are more serious are the caregivers, the lack of continuity of care, and caregiver support.”

Social isolation is the classic hallmark of a family caregiver. “I tell my caregivers, you are the most single important part of the equation. Without you, it all falls apart.”

She said caregivers need respect as well as financial support in some form or another for providing care.

“At the end of life, when this is all over, most (caregivers) end up financially devastated,” Carbo said. “They have lost their job, they were negatively impacted financially as a defenseless individual.”

Caregivers provide billions of dollars in free care every year, as I reported two years ago in this Healthline news story.

“So many of them become ill or die,” Carbo said. “Those are the issues that I see we are not addressing.”

(Photo Courtesy Diane Carbo)

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My dad, class clown of his memory care community

 

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This piece originally was published Nov. 7, 2014, on Healthline Contributors. That site no longer is live, so this piece is reprinted with permission here. Dad died in September 2015.

 By David Heitz

 The other day I was sitting with dad in the dining room of his memory care community, right before lunch. Along comes Dolores, one of the feistier residents, and Dolly, also quite feisty. They were side by side with their walkers while a line of six residents in wheelchairs, two abreast, followed them in.

“It’s the wagon train,” my dad said, as we both bust up laughing.

Dad can’t remember that my mom is dead, or even that his mom is dead. He worries some days about how he is going to get to work, or where his car is parked.

But even 18 months after placement in the facility, including the past 10 of them on hospice care, his sense of humor is intense on most days, his wit downright razor sharp on many.

He has a quip for every occasion, a nickname for everyone who works where he lives. One CNA in particular sometimes wears long skirts with her hair in a bun. Dad calls her “Mormon girl” and “Puritan.”

Unfortunately, he also says things widely considered worse than that. In fact, on Wednesday he pointed to another resident and said, “See her? She looks like a damaged Jack o’ lantern.”

Some days he points out the “tramps,” one by one. Other times he reports things he saw or heard at the assisted living residence. Sometimes you’re not really sure whether it actually happened or not. After 18 months I’ve seen and heard it all!

Be warned. My dad’s not politically correct. He’s a retired factory worker, and his sense of humor certainly does offend some people. But the point is that he still knows how to make himself laugh, and how to make others who appreciate his humor laugh with him. That makes him feel good, and I know it gives purpose to his life.

When it comes to discussing why he lives in an assisted living facility or why he’s not able to remember things anymore – or even go to the bathroom by himself – we generally don’t. But he likes to make jokes about being where he is.

One day he turned to me and said, “I live in a memory hospital!” For the first six months or so, he wasn’t sure where he was. He thought everyone who is dead lived there too, on various floors. He told me once, “I banged on Barbara’s door all night, but she wouldn’t let me in. Must be mad at me I guess.”

Barbara is my mother, who died in 1995. She had divorced my dad (for the second time … long story) 11 years prior to her death.

And there was plenty of fighting and him being locked out of the house prior to the divorce. He also has come to think that one of the CNAs who works there IS Barbara. While this CNA was pregnant, dad told everyone that she was carrying his child.

And while it’s funny, I think he really did believe it. So when we laugh at things he says, it doesn’t matter whether they’re true or false, right or wrong, offensive or not.

We’re laughing at what he has to say, and he laughs, too. And instead of hanging his head, like so many residents of dad’s facility unfortunately do, he’s acting silly – crossing his eyes, making faces and sometimes even giving the activities director the bird.

While he always has been very funny, he spent many years mired in self-pity and wouldn’t even allow himself to enjoy a laugh. It is interesting that in the sunset of his life, in a situation where many people go so far as to say they’d rather be dead, he is embracing the games that his mind is playing on him. Thank God.

He knows he is the class clown of his memory care community. They even dressed him as such at the Halloween party a couple of weeks back. There are some residents who have privately told me they even enjoy some of his fork-tongued quips.

He’ll do anything for a laugh. There’s one lady there who is seldom verbal, but who always has that look on her face that she’s about to bust up. Her eyes roll up into her head and everything. When dad and I really get going, she buckles over in laughter.

“Is she crying?” dad always asks. I say, “No dad, that’s the lady who laughs her butt off at everything she sees here!”

The other two really funny ones are Dolly and Dolores, although Dolly is very mean-spirited like my dad. For example, sometimes residents of memory care facilities will get stuck in a corner. They literally will forget how to turn around. Dolly will applaud a resident who finally figures out how to back up upon finding themselves in such a situation.

And Dolores is possibly my favorite. She often proclaims, “Hey! Come here!” But then can’t remember what she wants to tell you. Monday she announced, “Our bills should be much higher, and you all know it!” My dad laughed, as did several of the other residents.

Dementia affects everyone differently. I’m lucky that my dad is pleasant most of the time and in good humor.

Most days we can’t really have any sort of an actual conversation. But if he tells me a made-up story about another resident, or pokes fun at someone, I’ll agree with him and egg him on.

It’s all about laughing and making moments and memories, and as long as we can do that, I figure we’ve got the will to live. Dad has been on hospice for almost a year, after all.