A prayer that my Scottish neighbor goes out singing like her friends back home

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Editor’s note: This piece originally was written last year for Caregiver Relief. Special thanks to Diane Carbo. My neighbor died just days after this was written, presumably alone. Her nieces, who lived out of town, came to the funeral, a memorial service which was held several weeks later. The state seized her belongings to pay her bill at the county-owned nursing home, where her son, her caregiver and a veteran, had died just weeks before. Due to the dysfunction in the state of Illinois, her house (which she rented) still is not ready to rent again because of multiple delays in the state’s seizure and auctioning of her property.

By David Heitz

It’s politically correct in America to gush about how wonderful our country’s hospice programs are, and many of them are quite good.

But in Scotland, there’s a hospice that will totally change the way you think about caring for the dying. At Strathcarron, patients not only stay in their homes for as long as possible, but once a week they attend “day hospice” and truly celebrate life – even singing regularly (and with gusto, I may add) with other hospice patients and hospice staff.

Between belting out tunes that relay the stories of their lives and having their pain monitored, they also make good friends with others who are struggling with the reality that the end could be near.

The hospice hit U.S. shores last year in a documentary titled “Seven Songs for a Long Life” that debuted at the South by Southwest (SXSW) film festival in Austin, Texas.

You can learn more about the film and watch a trailer by clicking here.

The cast of characters is delightful – an elderly gentleman full of spunk who refuses to admit he is dying (he even refuses to sign a form crediting him an extra 100 pounds a week because he only has six months to live); a motorcyclist who had to leave the speedway when his MS became too crippling, but at the hospice learns to manage his pain; the mother of a 4-year-old daughter, who has a story that will break your heart but also inspire you with her courage and words of wisdom in the face of death; and Mandy, who is nothing less than the hospice nurse we want all of our loved ones to have in their final days.

The film’s cinematography is especially meaningful. It captures the beauty of the hospice, its people, and the Scottish countryside itself. My former next door neighbor is Scottish and spoke fondly of her homeland. Sadly, she recently became a ward of the state and was removed from her house and placed in a nursing home, just days after her son who cared for her died. Her son, a veteran, faced a long delay in seeing a doctor at the VA in Iowa City and eventually succumbed to cancer.

‘These patients are hungry for life’

As I watched the film, I thought about how wonderful it would be if my neighbor could be back in her homeland getting TLC at a place as wonderful as Strathcarron. Life sure doesn’t seem fair sometimes.

Amy Hardie, director of the film, told me there is no “day care” hospice model in the U.S.  The hospital in Scotland is funded in part by the U.K. National Health Service but still needs to fundraise a significant amount of money each year to stay open. It’s not easy in a working class area.

But the development director, a key cast member named Jim Brown, manages to pull it off by raising the needed 3.9 million pounds every year.

“It means that patients can stay at home, but know that each week they are coming in for a day where they will have expert medical attention by people they have got to know over months and often years,” Hardie told me in an email interview. “It is also a day where they meet with the same other patients who have a terminal illness, who are confronting their own mortality, but are often able to be kept pain free and mobile.

“These patients are hungry for life – they may know they are going to die of their disease, but there is life to be lived right up to the end, and hospice care is about helping them to make that life as fulfilling as possible – hence my role as film-maker in residence. No-one wants to be defined as a patient – singing was a potent way for the patients to show that they were more than patients. A song holds so much – the past, in the memories of when and where you sang the song, what the lyrics meant to you then – and also the present, when you sing, now, to the audience, connecting through the words of the song, an expression that goes beyond words; and somehow also the future, a promise of a future and a future when the song will remain, with you singing it, on the film, even if you are no longer here. It was the patient’s idea to sing, and they chose the songs. I was bowled over by the power and urgency of their singing. Each song shows how very alive they are, right up to the moment of death.”

Not all hospices are created equal

We hear so much these days about hospice not being what it used to be, no longer that sad, end of the road where patients are prepared for their inevitable deaths and given time to let that all sink in while being pumped full of morphine.

Today, people with various illnesses sometimes go on and off hospice several times. While they’re on it, they get music therapy, massages, spiritual support and other pampering. Their family is given support too.

But not all hospice providers are created equal, as I wrote last year in this piece for Caregiver Relief.

When my dad went on hospice the first time, he was nowhere near death. He was placed on hospice so that he could legally stay in his assisted living facility as opposed to being moved to a nursing home. He had become what is known as a “two to one” – meaning it took two employees at any one time to deal with him. He displayed outrageous behaviors due to his disease, behavioral-variant frontotemporal degeneration, or Pick’s, which you can learn more about clicking here. So having hospice workers come to the assisted living facility gave them extra help in caring for my dad.

Illinois law requires patients deemed “two to ones” be placed in nursing homes, and that is where my dad should have gone much earlier on in his illness. But hindsight is 20/20.

Just before filing this story, I called the nursing home where my Scottish neighbor was taken a few months back to check on her. “Sir, she is actively dying,” a terse nurse explained, quick to cut me off from speaking.

I became a little emotional and began to explain I was writing a piece about this film and that I had thought of Monica, since she is from Scotland. “Sir, I don’t mean to be rude, but…”

Yes, I know. You’re busy.

“Yes we are.”

Click.

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In the end, where did hard work and determination get the Long family?

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This piece originally was written last year for Caregiver Relief as one of several point-ups to the presidential election. Reprinted here with permission. Special thanks to Diane Carbo and Rhonda Long.

By David Heitz

Rhonda Long’s story is one of a middle class, hardworking family that is getting the short end of the caregiving stick.

Rhonda and her parents do not qualify for Medicaid. Medicaid pays for long-term care for the elderly, but only once they become completely broke.

Medicaid also provides day care for the elderly, which, in theory, gives a caregiver time to work a part-time job, since so many people have to quit their full-time jobs to take care of mom and/or dad, like Rhonda. But in so many states, like the despicably fiscally irresponsible state of Illinois, even those services are being cut. The front page of my local newspaper, The Rock Island Argus, read yesterday: “InTouch Adult Day Services to Close.” The reason? The state owes it $6 million in Medicaid payments. They just can’t keep going. (Editor’s note: InTouch later was taken over by a private company from Lutheran Social Services, but I am not sure of the current status of the services it provides).

What will happen to these people? Well if their children choose to care for them, they likely will end up on welfare while trying to also get by with mom or dad’s small Social Security check. If the care ends up being more than a family caregiver can handle, and it can be under such difficult stresses and circumstances such as dementia-related illness or both parents ill at the same time, the state will intervene and place the parent in a nursing home. Once the parent is completely broke, the state will pick up the $5,000 to $8,000 monthly nursing home bill. When it’s all over, the states goes into the homes of these people and auctions off all of their belongings to make up the difference. The children are left with nothing.

Related News: Dementia-friendly America communities help elderly stay in their homes longer (Click on the link to learn more)

Rhonda long has wondered why the government can’t pay caregivers a small living wage, or at least foot the bill for respite care so they can get a part-time job elsewhere.

But with the state of Illinois at least proving unable to do that for even the poorest of the poor, one wonders how it could be accomplished for the children of people drawing Medicare. I guess lottery funds would be one idea. Of course, everyone likes that going to the schools.

Something to think about: When we care for our children, we get to see them grow up and care for themselves. When we care for our parents, they only get worse.

Not a pretty picture, but it’s reality.

Meanwhile, Rhonda has lived with her mom and dad in their house for 11 years. “They had helped me out in a time of need and in return I told them they would never see the inside of a nursing home as long as I could help it,” she told Caregiver Relief. “I honored my commitment and continue to do so.”

Rhonda’s dad passed away in June. She is pictured with him here. Through the years Rhonda’s dad had four heart attacks (Rhonda quit her job after each one) and eventually chronic kidney disease, atherosclerosis, PAD, spinal stenosis, dementia and many other ailments. After his fourth heart attack, he became bowel and bladder incontinent.

He died at home in June, under hospice care, but it was very difficult for Rhonda and her mom.

Now, mom has Alzheimer’s. Remarkably, Rhonda feels “guilty” about having a meal to herself now that dad has gone. At least mom is in good enough shape were she can leave the house a couple of hours a day.

But let’s face it. Mom won’t be that way forever. Memory care, if you dare trust any of those facilities (memory care is a social model, not a care model), costs about $5,000 per month. A nursing home? At least a thousand per month more. And remember: No help caring for your elderly parents until they are broke. Click on the link to learn more.

“In the last 11 years I have been away from this house for my own pleasure a total of 32 hours,” Rhonda told Caregiver Relief. “And I had to beg for that. I love my brother deeply, but he just doesn’t get it. I went through and beyond caregiver burnout.”

Rhonda said that in retrospect, “I think if we had the money, respite care would have been very beneficial for all of us. I would have been able to be refreshed emotionally, and I would have had some time to be a daughter and not always the caregiver.”

So in the meantime, Rhonda lives with her mom in a house that has a reverse mortgage. When her mom dies, Rhonda will be an orphan and homeless.

Rhonda’s questions for President Trump: Why can’t the government pay caregivers a small living wage, or at least foot the bill for respite care so they can get a part-time job elsewhere?

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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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Praise God: Reunited with dad today after 108 days apart

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Editor’s note: This column originally was published Sept. 1, 2015, for Caregiver Relief. Reprinted here with permission. Special thanks to the graciousness of Diane Carbo at Caregiver Relief. Dad died 26 days after this piece was written.

Praise God. I was reunited with my dad today after 108 days.

This photo is in the chapel of his new nursing home. He was born in this very building darned near close to 80 years ago, when it was a hospital.

Until a couple of hours ago, I never knew for sure if I ever would see my dad again.

Dad has frontotemporal dementia, and the last two plus years have been incredibly painful. You can learn more about my dad’s rare disease by clicking here.

I worked very hard to convince my brother to place my dad in the best-looking memory care facility I could find when it became painfully obvious that I could no longer properly care for him. Not only that, but the job of tending to him here and there over the course of 10 years, and then living with him full-time for one year, just about killed me. By the time dad went into memory care, I had quit my job, had a problem with alcohol that I could not shake, and wondered if life ever would get better for either one of us.

It did. I went to work as a health writer for Healthline.com two weeks after dad went into memory care. It has blossomed into a wonderful career in health reporting. Dad finally adjusted to the new place and actually did quite well there for a while. And I am now 15 months sober.

But when the facility changed hands several months ago, even shortly before then actually, things really began to deteriorate. I was not satisfied with my dad’s care. I complained a lot. When a new executive director was installed shortly before the change in ownership, it all went to hell in a handbasket. She and I never saw eye to eye.

And then the facility trespassed me. Me, the one who fought tooth and nail to get him in there in the first place. You can read all about that by clicking here. Sadly, it’s really not that unusual of a practice. I have heard from people around the country and around the world who have had the same experience.

It even has happened again, recently, in my own community, to a woman who goes to a church I formerly attended. She was barred from seeing her sister after complaining about the care she was receiving.

As for my story, it’s all water under the bridge now. Memory care is a social model; people who need medical attention or have special needs really have no business in such places. It was clear after six months that he did not belong there. But instead of moving him, we agreed he would go on hospice so that the facility could get extra help on Medicare’s dime.

That turned out to be a bit of a nightmare. You can read what happened by clicking here, if you do not follow my columns regularly.

So when I walked into dad’s new nursing home today – where he has a beautiful, two-room suite – he looked up and said, “Oh yeah, I know you.” He said to the nurse, “That’s my friend.”

He thought I was Sonny Coleman, an old friend of his. But then he remembered who I was.

It marked the first time my dad, brother and I had been together in what would have been two years this Thanksgiving. Even with his FTD, dad was doing pretty well today. He kept saying, “We’re all a bunch of losers.” He was trying to make a joke I think. The aphasia was pretty bad. He was stuttering and unable to come up with words.

But after a couple of hours he was doing better. When the nurse tested his blood sugar and it was 298, she had to give him an insulin shot. At first he started yelling, but she had just the right touch with him. She spoke to him while she injected him, and he just smiled at her and didn’t even flinch.

When it came time for dinner, they brought him tacos. He seemed content with that. He asked the CNA, “Is this a $5,000 taco?”

LOL.

After a couple of hours, I left. I told him I would see him tomorrow. He said, “I’m glad we’re back to that again.”

He has gone downhill a bit mentally since I last saw him, but physically he seemed more robust than I expected. I wasn’t too happy to learn the memory care facility had lost his teeth…again. But I know that the nursing home where he’s at is very much by the book, and they are going to make sure his needs are met to the letter of the law. I have no doubt whatsoever about that.

I’m at ease for the first time in nearly four months. I know it’s not going to be a cakewalk…moving someone with dementia never is easy. But he seems to sort of know what is going on and seems OK with it.

Before I left, he said, “Hey, I went to the foreman the last time I saw you. I did.”

A John Deere retiree, he makes lots of “shop” references. That was his way of telling me he wasn’t happy with what went down that day back in early May.

Thank God it’s behind us.

I can’t wait to see dad again tomorrow. Praise God.

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