As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die

By Rebecca Hersher

Six years after he was diagnosed with early onset Alzheimer's disease, Greg O'Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.
Six years after he was diagnosed with early onset Alzheimer’s disease, Greg O’Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.

In this installment of NPR’s series Inside Alzheimer’s, we hear from Greg O’Brien about his decision to forgo treatment for another life-threatening illness. A longtime journalist in Cape Cod, Mass., O’Brien was diagnosed with early onset Alzheimer’s disease in 2009.

These days, Greg O’Brien is thinking differently about the future. It’s been six years since his Alzheimer’s diagnosis, and he’s shared with NPR listeners a lot about his fight to maintain what’s left of his memory. He’s shared his struggles with losing independence, and with helping his close-knit family deal with his illness.

What O’Brien hasn’t wanted to talk about until now is the diagnosis he got two weeks before he and his family learned he had Alzheimer’s disease: O’Brien also has stage 3 prostate cancer. Now, as his Alzheimer’s symptoms worsen, the cancer is increasingly on his mind.

“I just don’t know how much longer I can keep putting up this fight,” he says.

This summer, Greg and his wife, Mary Catherine O’Brien, have started talking about how he wants to spend the final years of his life — and what Greg calls his “exit strategy.”

He hopes the cancer will kill him before the Alzheimer’s disease completely robs him of his identity.

Recently Greg sat down with his close friend and primary care physician, Dr. Barry Conant, and with Mary Catherine, to talk about that decision and about Greg’s prognosis.

Interview Highlights

Dr. Barry Conant on the ethics of not treating Greg’s prostate cancer

I think honestly, in a perverse kind of a way, it gives you solace.

Maybe it will shorten the period in your life which you find right now to be something you want to avoid, and so far you’re only talking about neglect of a potentially terminal condition.

If you decided to be more proactive, that’s where the discussion becomes more interesting. Some people would say I’m violating 001my Hippocratic oath by discussing that, but I think — I don’t feel uncomfortable having that discussion. And, while you still have the ability to reason, it wouldn’t be a bad discussion to have with your family.

Conant — who, like O’Brien, has cancer — consoles Greg that his family will be OK

Nobody is indispensable — nobody. And if you or I were to immediately vanish from the Earth, our families would do fine. They have family support. They have friends’ support. They’re in a nice community. It’s a terrible sense of loss that they’ll have, but they will do fine. And if they’re honest with themselves, they’d realize that they’re going to do fine.

Greg and Mary Catherine discuss Greg’s prognosis

Mary Catherine: Going through Alzheimer’s, it’s not the plan.

Greg: Where do we go from here?

Mary Catherine: That I don’t know. …

Greg: It’s getting so frustrating for me. I mean I care, obviously, deeply about you and the kids. I could see 3 or 4 more years of this, but I can’t keep the fight up at this level. We talked about that the other night. How did you feel about that?

Mary Catherine: Wow … (chokes up). I don’t want to talk about it.

Greg: Can you see it coming?

Mary Catherine: Yeah, I can. Fast.

Greg: Are you OK with me not treating the prostate cancer?

Mary Catherine: Only because you’re OK with it. You need that exit strategy, and the exit strategy with Alzheimer’s is horrible. Well, they’re both horrible.

Greg: You know I’ve been there with my grandfather and mother, and don’t want to take my family and friends to that place.

Mary Catherine: Right. I know. I understand.

Greg: Do you still love me, dear?

Mary Catherine: Yes, I do, dear.

Greg: I love you, too.

Complete Article HERE!

Caring for someone who is terminally ill

The following information is primarily for our friends in the UK.  However, it’s a great checklist for the rest of us too.

 

It’s important to understand the financial, practical and emotional support available to you and the person you care for. Information on the support that may be available to you or the person you care for is provided below.

sick child

Financial support

You or the person you care for may be entitled to some financial support. Some information on this is provided below.

Benefits for the person you care for

The person you care for may be entitled to:

  • Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
  • Attendance Allowance, if they are 65 or over and need help with personal care
  • Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work

There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.

Carer’s Allowance

As a carer, you may be entitled to receive Carer’s Allowance. You can keep getting this for up to 12 weeks if the person you care for goes into hospital and for up to 4 weeks if they go into a care home (provided certain conditions are met). If the person you care for dies, Carer’s Allowance will usually stop after eight weeks.

Practical support

There’s lots of support available from different organisations for carers. It’s important that you have enough practical and emotional support in your caring role.

Support from social services

The social services department of your local Trust may provide a range of social care services and equipment for terminally ill people.

Assessments from your local Trust

An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you, as a carer, are entitled to a carer’s assessment.

Emotional support

Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you’re caring for and other family members may also benefit from counseling.

Support groups for carers

There may be support groups for carers in your local area. This could give you the opportunity to talk to other people in the same situation as yourself.

Help with caring for someone at home

There are different options to help you care for someone at home.

Medical and nursing care

If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their local doctor (GP). Services that may be available include:

  • visits from a district or community nurse (for example, to change dressings, give injections or help with bathing or toileting)
  • help with getting the person into and out of bed

Services that are provided by the local Trusts may vary from region to region.

Short-term breaks

Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local Trust.

Employing a professional carer

If you’re caring for someone who needs a lot of care, you may choose to employ a professional carer (or carers) to share the caring role with you.

Alternatives to caring for someone at home

Hospice care

Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.

Hospices specialise in palliative care, which aims to make the end of a person’s life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counseling.

Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.

There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.

In Northern Ireland, hospice care is provided by:

Hospital care

There may be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, your local Trust will work to meet any continuing health and social care needs. The person’s needs should be assessed before they return home and a package of care arranged for them.

Care homes

If the person you care for needs a level of care and support that cannot be provided in their own home, a residential care or nursing home could be the answer. You can find detailed information about care homes in the health and well-being section of nidirect.

Helping the person you care for prepare for death

It’s natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want (or don’t want) at the end of their life. The ‘rights and responsibilities’ section of nidirect contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.

When the person you care for dies

There are things you may need to consider if you care for a terminally ill person.

What to do after a death

When someone dies, there are some things you will need to do straight away, or within the first few days and weeks.

Bereavement counseling

When someone close to you dies, you may benefit from counseling from a specialist bereavement counsellor. The charity Cruse Bereavement Care can help with this.

Benefits and bereavement

If the person you care for dies, Carers Allowance will usually stop after eight weeks. If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:

  • bereavement payment; a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
  • widowed parents allowance for people who have dependent children
  • bereavement allowance for those aged 45 and over when their spouse or civil partner dies

Complete Article HERE!

Feather Death Crowns: Appalachian Omens of Death

In Appalachian culture, a bizarre phenomenon of feather crowns found in the pillows of sick people became known as an omen of death.

Vintage feather death crown photo by Lori Kimball
Feather death crown dating somewhere between the 1800s and the 1930s.

By J. Nathan Couch

Feather pillows are about as rare the Loch Ness Monster, but once upon a time they were as common as could be.

Long ago, the people of Appalachia began to notice a peculiar phenomenon: odd crownlike masses in the pillows of the seriously ill or recently deceased.

These objects became known as Death Crowns (or less-commonly, angel crowns). Death Crowns are usually elaborate, interlocking designs that resemble a disc or crown. The quills always point inward, and though rare, are only found in the feather pillows of the seriously ill or recently deceased.

Because of the isolated, rural nature of the area, the phenomenon appears to be unique to Appalachia, or locations where some of these mountain folk migrated, such as Missouri, Indiana, and Ohio. But it’s almost exclusively a lost-belief now that most people have switched out their feather pillows for comfort foam or synthetic fibers.

I was fortunate enough to overhear a death crown story in my youth, otherwise I’d likely be unaware such a concept ever existed. My family has lived in Hall County, Georgia for generations, just miles from the foothills of the Blue Ridge Mountains.

My great aunt paid us a visit when I was maybe 5 years old. She started talking about the recent death of her elderly father. He’d been killed while walking around a bus he’d just exited. A car sped by without caution, striking the old man. She was elected the sorrowful chore of sorting through her father’s belongings. As she lifted her father’s ancient feather pillow she felt something solid inside. She started to throw the pillow away, but something compelled her to open it up. She reached inside and probed with her fingers in search of what she had felt. To her astonishment, she pulled out an intricately woven wreath of feathers, roughly the size of a bird’s nest. She took this has a sign her father had gone to heaven.

After several minutes of convincing, she persuaded me to go play. After a while, I forgot about the whole thing—until bed of course. I recall squeezing and kneading my pillow in search of anything that might remotely feel like a “death wreath.” I didn’t. Finally, I fell asleep.

A vintage death crown with post-mortem photo and funeral card
Vintage death crown in a bell jar with post-mortem photo and funeral card.

These odd formations are usually interpreted as a heavenly sign, but skeptics believe that the movements of a dying person—tossing and turning combined with fever sweats–could cause these objects to take form.

If you are one of the few that still sleeps on feather pillow, do not lose all hope if you find a Death Crown in your pillow tonight. One old wives’ tale claims that if you break these wreaths up you could prevent the death of the person the pillow belongs to.

A collection of these oddities can be found at the Museum of Appalachia in Clinton, Tennessee.

Complete Article HERE!

Drugs to prevent ‘death rattle’ of dying patients not justifiable if intention is only to reduce distress of relatives, says new guidelines

end of life 4
The National Institute of Health and Care Excellence (NICE) says there is little evidence that the drugs used are effective

By CHARLIE COOPER

Drugs used to prevent the so-called “death rattle” of dying patients can have unpleasant side effects and may not be “morally and economically” justifiable if used only to reduce the distress of relatives, according to new guidelines.

The death rattle is a common symptom in the final days and hours before death. It is one of most well-known indicators that death is near and can be extremely upsetting for relatives at the bedside.

It occurs when secretions such as saliva collect at the back of the throat – often after a person has lost their ability to swallow – creating a hollow, gurgling sound.

Clinicians often use drugs called anti-muscarinic agents to ‘dry up’ the secretions, in order to reduce the symptoms.

However, according to new draft guidance on the care of the dying from the National Institute of Health and Care Excellence (NICE), there is little evidence that the drugs are effective, and they can also cause side effects including dryness in the mouth, blurred vision and retention of urine.

The guidance says that repositioning the patient or using suction tubes can be just as effective at reducing the symptoms.

“It is common to experience noisy respiratory secretions at the end of life…and the death rattle is a strong predictor of death,” the draft guidance says. “The noise can cause considerable distress, both at the time and possibly after death, due to concerns that the person may have drowned or suffocated to death.

“For many years it has been the practice of clinicians to administer subcutaneous anti-muscarinic agents in an attempt to ‘dry up’ secretions and relieve any distress primarily to carers and relatives despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.”

It goes on to say that, along with the side effects, the cost of using drugs makes it “hard both morally and economically to justify their continued use when the current evidence does not support them and treatment is usually aimed at minimising distress of people other than the dying person.”

The new guidance also includes recommendations on fluid intake for dying people, decision-making around medication and communication with patients and relatives.

Their publication follows the abolition last year of the controversial Liverpool Care Pathway (LCP), which was withdrawn after a review found serious failings in the way it was being implemented, including concerns that decisions around end of life care were not always being made by experienced clinicians.

NICE also said the LCP had suffered from a “perception that hydration and some essential medications may have been withheld or withdrawn, with negative impact on the dying process.”

The new guidelines, which will now go out for consultation, state that people in the last days of life should be encouraged to drink if they are able and wish to.

Sir Andrew Dillon, chief executive of NICE said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.

“Earlier this year the Parliamentary and Health Service Ombudsman said that end of life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”

Complete Article HERE!

My Dog’s Activity Tracker Is Letting Me Watch Her Die

By 

whistlegps

I’M HOLDING A thick wad of paper towels against my dog’s hip, shushing her and patting her head. I’m fairly timid at first, worried that pressing against her burst cyst could hurt her. But instead of yelping, she just stares at me with pleading “pet me more” eyes and settles her chin against my free hand. I gently, and then more firmly, push into the spot of wet, matted fur where it seems one of her various growths has burst. The liquid isn’t pussy or filmy. It’s just clear, like water. But it’s the third time in as many days that I’ve found her with a soaked spot, sort of moping around while it leaks. I’m just hoping it’s not urine, because that would mean the end is nearer than I want it to be.

Meanwhile, the canine fitness tracker she’s wearing—a coin-sized silver disc that attaches to her collar—reports everything is going great. This can’t be great, right?

I’ve been living away from Gypsy (that is to say, out of my parents’ home) for 10 years now. But when I moved abroad I decided: I need to be able to know as much about my pup as possible, even in my absence. Second-hand reports weren’t enough. So, I decided to strap an activity reader to her and watch the cold, hard data pour in.

I know that everyone says they love their dog, but I really love my dog. My family adopted Gypsy (also known as Roo, Roo Roo, Ooo Roo, Jibba, or Jibba Jabba) when I was in high school—my mom shocked us all when she brought home an intensely affectionate Border Collie-Australian Shepherd mix who was terrified of fireworks and bicycles and loved ice cubes. She is, to be totally honest, the best dog.

Gypsy
Gypsy

When I went to college, I lived close enough that I could see Gypsy every few months. After graduation, I moved a mere 45 minutes away and saw my dog even more often. But life got busier: My parents didn’t bring her on trips to see me (she was getting older, getting into the car became more difficult), and I didn’t have as much time to drive home. When I moved to Seattle, about four and a half hours away, I saw her even less. And then, when I moved to the Caribbean, it hit me: Gypsy might die while I’m gone. I might not get a call, telling me to come say goodbye, because it would be impossible.

I was home a few months ago, visiting my family—and my dog. She’s always had the manic energy of her breed, coupled with an endearing sweetness; she’s seemed like a puppy since the day she came home. But I finally noticed it: She had cysts, her fur was getting matted more easily. Her eyes were a little cloudier and didn’t follow you as well. Her back legs struggled to push her up on the hardwood floors; she would slide a bit, sometimes fall down. She definitely couldn’t sprint like she used to anymore. She was old.

That’s when I decided that if I couldn’t be around physically for Gypsy’s last months, I would be around digitally. I figured if I couldn’t actually be with her, I would use technology to… “be” with her. So I got a Fitbit for my dog.

Not actually a Fitbit, but a Whistle, a $99 canine activity tracker which you often hear described by people who own one as “the Fitbit for dogs.” Whistle has a motion sensor and a GPS sensor, so you can see how much exercise and rest your dog is getting. You can include additional info, like how much she’s eating. Within the app, you can attach photos you’ve taken.

activity appAt first, it was fun—adorable, even! I could see how active and playful Gypsy was compared to other dogs similar to her. I could see when she was out on a walk, and how much sleep she was getting. Whistle told me that she had an 82 percent success rate of hitting her goals (75 out of 91 days) and her best streak for doing so was a whopping 20 days. In fact, she’s better at meeting her activity goals than most dogs like her, so says Whistle. (She would get an average of 84 minutes of activity a day—similar dogs apparently get around 59.)

I watched from abroad as Gypsy hit her daily quota for activity and zipped past her exercise requirements. I noted to myself that it seemed like she wasn’t getting as much sleep as a dog her age and size should (a stat Whistle helps calculate), but hey, too little sleep was surely a sign she was more energetic and less lethargic! A good thing! Each evening, an alert would roll in, “Gypsy hit her goal!” and I felt soothed, comforted: She was old, but was doing fine.

As it turns out, she was only sort of “technically” doing fine. After moving back to the U.S., I made a trip to visit to my parents. While there, I would get Whistle alerts while sitting in the same room as Roo. Her activity report rolls in while I listen to her pant for no reason, or I get her sleep status while her paws struggle against the hardwood floors.

It’s not that Whistle is inaccurate—hardly. It’s just that when you’re not there, actually seeing your dog, the reports don’t spell out the entirety of what’s happening. Sure, she still meets her activity goals, but Whistle doesn’t record how she slipped on a stair. I can see that she’s still eating her dinner, which is fantastic, but the device can’t show me how confused and panicked she seems when she wakes up—all very obvious differences now that, despite her relative health, are startling. I was somewhat lured into thinking everything was fine, that I would come home to my dog, the ageless wonder. Because on paper (or, screen, rather), that’s what I’d convinced myself she was.

To be honest though, when I jump out and ignore the day-to-day reports and look at Whistle’s overall data, I activity app2can see the decline—which is such a strange thing to see defined in an app. Usually, these sorts of services are about living better: We want to lose weight or monitor our heart rates, and Fitbits, Fuelbands, and Apple Watches give us shiny charts and graphs so we can analyze ourselves and do so. But what about when a tracker isn’t showing that you’re getting better—what if it says you’re getting worse? If someone were to wear one of these things forever, they’d notice a change from improving their body to watching it die.

Now, I get nervous that I’ll see her activity plummet—maybe stop completely. That I’ll have a chart that shows me the moment she gave up, or even the moment she died.

Yesterday, we took Gypsy back to the vet to inspect her cysts. The vet told us, though, that it looks like there’s a lot of urine in her fur, too—and that she’s becoming incontinent. Which means, of course, that her health is worse than we thought. I went and bought pads to put underneath her beds, gave her a thorough bath, and took her for a walk. And despite the vet’s warning, she tugged at the leash, wanting to go faster, jumping back and forth (albeit it a little feebly) like a dog half her age.

Whistle

I’m about to leave and move away again. I know it’s even more possible I won’t see Roo after this. So I figured it’s time to decide: Do I leave the Whistle on and continue to track her health, even if that means being able to zoom out on the data and literally watch her die? Even though it’s scary and sad (because you know, death is scary and sad), I want to. When I can’t physically be there to pet her while she falls asleep or take her for a walk, I can log in and see she’s resting, or that she just had a particularly active ten minutes.

I know no amount of trackers and technology will keep her alive, but those push notifications remain a comfort. Every time Gypsy meets her activity goal, that alert says that even though she’s old and even though she’s probably dying, she’s still my dog and she’s still out there, living as much and as best as she can. The reality isn’t as easy to parse as a few colorful pixels—she has good days and bad days, sometimes it’s clear she’s struggling and other times she acts like she’ll live another ten years. The tiny window Whistle gives me isn’t the whole story, but it’s a little piece of it, and if I’m going to be gone for the end of Gypsy’s story, then I’ll take whatever part of it I can.

Complete Article HERE!

Perspective on death from a dying man

The family stops on a country road. Ted stands outside, listening to the wind as he often enjoys during the road trips. He turns around to look at his children and grandchildren, but they’re already in the car driving away. He’s alone.

Ted wakes up.Ted Dotts

He rustles around and realizes it was a dream Still, it is the closest the 80-year-old Lubbock resident has ever been to fearing death.

Dotts fears becoming an ugly, grouchy old man when medication can’t alleviate his physical pain. But he doesn’t fear death.

He knows it’s inevitable.

He has known that ever since he was diagnosed with prostate and bone cancer in September — ever since he decided to opt against curative treatment for the crippling disease, refusing to put the burden of his health on taxpayers.

“My life — I’m richly happy, probably happier now than I’ve ever been, and that lasts through the day most of the time,” said Dotts, pastor emeritus of St. John’s United Methodist Church. “Death is a matter of releasing me from anything that’s less than God … and I get ushered into a new life and then I’m trusted to make whatever is to be made.”

Preparing for death

Two yellow folders are taped on a closet near the entryway of the Dottses’ home.

Betty’s folder is simple: An out-of-hospital “Do Not Resuscitate” order in case she dies at their apartment at the Carillon LifeCare Community in Lubbock.

Ted’s orders, written in all caps, are more detailed: No CPR. No hospital. No EMS-ambulance. No ER. No antibiotics. No tracheotomy. No breathing assistance devices.

While the doctor’s orders stop there, it’s followed by 12 phone numbers for Betty to call when her husband inevitably dies.

The couple has talked about death for years — not every day, but enough to understand each other’s end-of-life wishes. But after Ted’s cancer diagnosis, death became more imminent.

“(When I found out,) I had a feeling of the heart just sinking, like the bottom had dropped out,” Betty said. “But I also, in my thinking, knew ‘Alright, this is a time to prepare yourself.’ ”

She is not only preparing herself for the emotions that will surround the death of her husband, but the practicality of it.

Without Ted’s help, Betty will be completely alone in running their household, including finances that Ted manages online.

“I don’t like computers, so I’m learning about the computer,” Betty said. “He’s very careful with all our money and how it goes and where it goes to and so forth, so he’s teaching me.”

When a person maps out different scenarios for his death and decides what he’d like to do in each situation, it lifts a burden from any family who may be stressed out about what to do following a terminal diagnosis, said Charley Wasson, executive director and CEO of Hospice of Lubbock.

He said it also takes away second-guessing and allows families to make end-of-life decisions confidently instead of out of fear.

As Betty takes care of her husband during his illness, Ted knows she’s already suffering the grief of losing him.

Ted also experiences grief in not being able to take care of Betty when it’s her time to die.

“I’ll be gone and who will be that close to her? Children, of course, but they have their own lives,” Ted said. “You can hire doctors and nurses, but it won’t be anyone that close to her as she is to me. … That’s a loss that I have and every day I have to see her and know that she’ll have to go through much of this death by herself and won’t have me there to do what she does for me.”

Making the decision

The shots would cost $5,000.

It was too much.

Ted knew the treatment would be covered by Medicare. But, he already had his rules in place, including not using community resources to prolong his life for only a couple of months when he had already exceeded the life expectancy for the average American male.

After the cancer diagnosis, the doctor told him about the recommended treatment, including radiation, surgery and, of course, the shots.

“After you’re 80 years old, some studies show you’ll spend more on the last six months of your life then you spent your first 80 years of your life,” Dotts said. “Some of those expenses are extremely high.”

Created in 1965, Medicare was intended to answer growing reports of impoverished seniors languishing or dying because they lacked health insurance.

According to Centers for Medicare & Medicaid Services, more than 50 million seniors and nearly 3 million Texans are enrolled in the government program. Even though Medicare spending is trending down by nearly $1,200 per beneficiary, overall spending grew 3.4 percent to $585.7 billion in 2013, or 20 percent of the nation’s total health expenditures.

Dotts doesn’t want any part in it.

Instead of spending Medicare funds on prolonging his already fulfilling life, Dotts said he would rather those funds be available for his 18-year-old grandchild or 40-year-old child.

That’s one of the main reasons that outside of pain medication, Dotts isn’t taking anything to treat the cancer.

“I’ve known Ted for years and so he had a very thoughtful, long progression of thought. He’s held this standard that this is how he’s going to die: He’s not going to use community resources and he is going to utilize hospice for years,” Wasson said. “That’s not only a gift to himself but a gift to his family and the people around him. He’s very comfortable in that decision.”

Wasson said he agrees with Ted’s decision to focus on quality of life rather than prolonging it.

“If many people had the opportunity to talk to Ted and his rationale about why he made that decision many years ago, why he’s held true to that decision for many years, I think a lot of people would see wisdom in it,” Wasson said. “But I don’t think a lot of people get to because they don’t have the conversation.”

Ted and Betty moved to the Carillon LifeCare Community seven years ago, knowing they’re at the other spectrum of life.

Although Betty said Americans may be living longer, there’s still a responsibility to take care of future generations.

“It’s just not fair for our children and grandchildren, just because he could spend a lot of money (on cancer treatment) and Medicare would pay for it,” Betty said. “But somebody is paying for that and money is going to be taken from here to give to there and he said, ‘I do not want to take the community resources from others just so I could live a few more months.’ ”

Dealing with the pain

Betty imagines her husband falling to the floor as he’s walking up the stairs to their apartment. Other times she pictures him stumbling and pretending to faint. Betty knows it’s not real; they’re simply imagining for the inevitable.

“There’s so much involved. It’s a major event in life to die and we try to get through it without talking about it, but then all of a sudden you’ll be faced with it,” Ted said. “We get to share that and the rich depth of (imagining death). I thought we were pretty close but we’ve gotten closer than I ever dreamed now that death is next door.”

Although he hasn’t broken any bones yet, Ted’s pain varies on a daily basis. Eventually it was bad enough that he received a shot that doctors assured him was not for longevity, but rather to help alleviate the severe pain.

“They warned him the pain is going to get worse for two weeks and then it will drop, and so on a scale of 1 to 10 he got at least to a 7 and maybe higher,” Betty said. “You can’t sleep when you have that kind of pain, but then it did drop after two weeks and it’s gone down. … Many people live with pain and it’s learning to manage the pain. It’s not that he doesn’t feel it, but it’s where it doesn’t dominate him.”

Despite the pain Ted endures, Betty said she wasn’t surprised by her husband’s decision to receive palliative care rather than curative treatment.

“His personality is one in which he thinks things through and reasons things through, tries to see both sides and to see the larger picture. He does not just jump into something, knee-jerk,” Betty said. “Most mornings he will be studying for several hours and he studies not just the Bible or theology, but psychology or history and certainly death.”

Lasting legacy

By helping residents with paperwork for food stamps, the Dottses still connect with the community around them despite living in a retirement home. They know their pain will end soon and that it doesn’t compare to the suffering others endure daily.

Ted hosts local radio show “Faith Matters” but has contributed to the community in the past as a longtime clergyman and his work as former senior vice president of ethics and faith for the Covenant Health System.

The Dottses also started the first Parents, Families and Friends of Lesbians and Gays in Lubbock in 1993.

“We started the PFLAG and that was overshadowed with fear and anxiety of persecution or vandalism or maliciousness. I don’t think that’s near as possible now, plus you have gay marriage that has passed in several states so I think it’s a movement that’s thriving and flourishing and helping people care for each other,” Ted said. “I go to sleep at night, and Betty does too, very grateful that we got involved. … People who have same-sex love and they’re persecuted over it, it can make them mean and bitter but for the most part.”

And through panel discussions at churches around Lubbock, Dotts has also shared his end-of-life decision with the community, once again bringing to the forefront a topic that may be difficult for some people to face.

Wasson said he hopes Ted’s openness inspires residents to talk about end-of-life decisions and discuss at what point it becomes about quality of life, rather than treatment to add a few months or years of battling an illness.

“In America we are a death-averse society. We don’t like to talk about death, which is why Ted’s talk the other night was so special, because he was very honest and open about death and his journey,” Wasson said. “I think this is quintessential Ted. He is great at bringing people together and talking about the tough in life and doing it with a great amount of grace and eloquence.”

Accepting death

Ted doesn’t know if he has two months left to live, or two years. But, the couple’s faith puts them at ease.

“I don’t think God even notices whether we’re dead or alive,” Betty said. “It doesn’t matter that much; we are still loved by God whether we’re here or there, and what there is, we don’t know, we haven’t been there. But, it’s our faith and that trust (that) we’re going to be cared for and loved and it’s going to be alright. It’s going to be good so I don’t have to get all uptight (about dying).”

They do have their moments of grief, but the couple mostly laughs and teases one other.

They realize this time next year, Ted may be dead, but the talks about his death have brought them closer.

“It’s like being able to see into each other’s heart and to be right with them,” said Betty, who will turn 79 in a few weeks. “He kept saying he wanted to live longer so he could take care of me when I died, but he’s dying first.”
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Rural Doctor Launches Startup To Ease Pain Of Dying Patients

By April Dembosky

Dr. Michael Fratkin is getting a ride to work today from a friend.

“It’s an old plane. Her name’s ‘Thumper,’ ” says pilot Mark Harris, as he revs the engine of the tiny 1957 Cessna 182.

Fratkin is an internist and specialist in palliative medicine. He’s the guy who comes in when the cancer doctors first deliver a serious diagnosis.

He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they’re willing — and not willing — to undergo.

In rural Humboldt County, in the far northern reaches of California, Fratkin is essentially the only doctor in a 120-mile stretch who does what he does.

“There’s very little sophisticated understanding of the kinds of skills that really matter for people at the very end,” he says.

It takes 30 minutes to fly from Eureka, Calif., to the Hoopa Valley Indian Reservation. On this trip, Fratkin is going to visit a man named Paul James, who is dying of liver cancer.

“A good number of patients in my practice are cared for in communities that have no access to hospice services,” Fratkin says.

The plane touches down on a narrow landing strip. A loose horse runs next to the plane as we taxi down the runway.

Fratkin is here to make a rare house call. He met Paul and his wife, Cessie Abbott, at the hospital in Eureka. But the two-hour drive is too far for them to make often, so Fratkin comes to them.

It’s a visit that Cessie, in particular, has been waiting for. She and her husband know he’s dying. But it’s hard for them to talk to each other about it.

“Dr. Fratkin has kind of been my angel,” she says. Fratkin gets her husband to open up, she says, and reveal things he might not otherwise, because Paul’s “trying to be strong for us, I think.”

Cessie tells Fratkin that the pain in Paul’s belly has been getting worse.

“He’s moaning in his sleep now,” she says.

“Have you ever taken morphine tablets?” Fratkin asks Paul. Cessie explains that those tablets didn’t work for her husband. “Have you ever taken methadone?” Fratkin asks him. “We’re going to add a medicine that is long-acting.”

Fratkin believes there should be a spiritual component of these discussions, too.

“Yeah, Paul, there’s more to you than this body of yours, isn’t there?” he says, a refrain he repeats with almost all his patients.

“Oh yeah,” Paul says, and then goes quiet for a bit. He’s a member of the Yurok tribe, and talks about how happy he is when he’s in the mountains, hunting with his grandsons.

Cessie says she can hear Paul praying when he’s alone in the bathroom. So Fratkin asks him to light some Indian root and say a prayer now.

“Great spirit, that created this earth …,” Paul begins, his eyes clenched shut.

By the time Fratkin leaves the Hoopa Valley, he’s spent half a day with one patient. This is something the hospital in Eureka just couldn’t afford to have him do.

Fratkin says he was under constant pressure to see patient after patient to meet the hospital’s billing quotas.

“It’s very hard for one doctor to manage the complexity of each individual patient and to crank it out in any way that generates productive revenue,” he says.

Fratkin decided he couldn’t, within the hospital system, easily provide the kind of palliative care he sees as his calling. So he decided to quit — and launch a startup.

“I had to sort out an out-of-the-box solution,” he says.

He calls his new company ResolutionCare. There’s no office, no clinic. Instead he wants to put the money for those resources into hiring a team of people who can travel and make house calls, so that very ill patients don’t have to get to the doctor’s office. When time is stretched, he plans to use video conferencing.

The key challenge is financing his big idea. Government programs like Medicare and Medicaid don’t pay for video sessions when the patient is at home. And they pay poorly for home visits.

So far, Fratkin has been cultivating private donors and is looking for foundation grants. He’s arranged an independent contract to sell his services back to the hospital he recently left. And he’s launched a crowdfunding campaign to back the training he’d like to do for other doctors of palliative medicine who practice in rural areas.

Down the line, Fratkin is even thinking of asking some of his more well-off patients to pay out-of-pocket for his services.

When he gets back to Eureka, after the visit with Paul James, Fratkin hops in his blue Prius and drives 30 minutes north to see Mary Maloney. She’s dying of esophageal cancer. She tried radiation and chemo for a while, but both made her feel awful. Fratkin was the one who told her it was OK to stop treatment.

“I mean, I love life,” Maloney says from the recliner in her home in Blue Lake. “I don’t want to let it go. But I don’t know if I’m willing enough to put myself through all the things I’d have to put myself through.”

Fratkin says he’s treated more than a thousand patients and, like other entrepreneurs with big ideas, thinks his startup could change the world. He knows he’s up against tough odds though — most startups don’t succeed.
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