0:12

He said to me, I

0:14

have seen the Alzheimer's long goodbye

0:17

close up. We had a very close

0:19

family friend who went through it for a number of

0:21

years. He said, that is not for

0:23

me. I would rather die

0:26

on my feet than live on my knees. And

0:28

you're going to help me because you love me, And

0:31

he was right. In

0:34

the writer, Amy Bloom traveled to Switzerland

0:37

to help her husband Brian die with dignity.

0:41

Brian wanted to face death on his own

0:43

terms before he was plunged into the

0:45

long suffering of living with a dementing

0:48

disease. Amy

0:51

writes beautifully about their latent

0:53

life romance and how she helped

0:55

Brian to end his life in her

0:57

gorgeous memoir in Love.

1:01

This story hits close to home for any

1:03

of us who have ever watched a loved one

1:05

suffer and felt helpless to

1:08

alleviate their pain. My

1:10

own dad was bedridden with muscular dystrophy

1:12

for eight years before he finally

1:15

passed in and I

1:17

know that if I could have, I would have done

1:19

anything to help him do what he

1:21

wanted to do to have a more dignified

1:23

death. That's

1:26

exactly what Amy did manage

1:28

to do. It

1:30

is completely physically painless.

1:34

It is very peaceful. The atmosphere

1:36

is very tranquil and

1:39

supportive. Aside

1:41

from the fact that you have to fly thousands

1:43

of miles away from home, it

1:46

is quite comfortable and do

1:48

you feel safe? And

1:50

I don't think that one could ask for more in

1:53

that sense. I'm

1:56

Joe Piazza and this is

1:59

committed. Amy

2:29

and Brian were in their fifties when they

2:31

met in a small town where they both lived in

2:33

two thousand and five. There

2:36

were a lot of Northern Europeans and

2:38

old Yankees and we were neither one.

2:41

And he was active in conservation

2:44

and public space, and I

2:46

was active with the library, and

2:49

our past kept crossing, and eventually,

2:53

you know, something sparked and clicked

2:56

and we fell in love. And

2:59

sometimes people act on that in middle age,

3:01

and sometimes they don't, but we did. I

3:04

think you know when you are old enough, you

3:06

know when you know. On the other hand, when you

3:08

were old enough, you don't always leap. The

3:12

two of them had lived very full

3:15

lives. They've had other partners

3:17

and children and careers. They

3:19

knew who they were and what they wanted out

3:21

of life. I

3:24

think often when you're younger, there's a lot

3:26

of fantasizing about who

3:28

the other person is and how they will

3:30

love you and how they will make you feel.

3:33

Oh, which is great but entirely

3:36

dependent on another person,

3:38

as opposed to knowing who you

3:40

are and the ways in which

3:43

you can be a good partner or the ways in which you

3:45

are still a work in progress. They

3:48

got married in two thousand seven, and for the

3:50

next ten years they lived a great

3:52

life, filled with job that they loved, delicious

3:55

food and playing with their grandkids.

3:59

And you know, we traveled

4:02

a little bit and worked

4:05

hard and made dinner and

4:07

watched Peaky Blinders, and you

4:11

know, puttered in the garden and took walks

4:13

and do the kinds of things that middle aged

4:15

people do if they're lucky. H

4:19

And when did you, guys, when

4:21

did you find out about his Alzheimer's

4:24

diagnosis. Well,

4:26

the diagnosis came

4:29

in ten, but I would say

4:32

his symptoms began in twenty six.

4:35

Okay, what were the early symptoms. The

4:37

early symptoms was sort

4:39

of a marked loss of short term

4:42

memory. He began to struggle with

4:45

directions and how to get to

4:47

someplace that he had been before. He

4:51

was having some difficulty at work that seemed

4:53

to be. He was an architect entirely

4:56

about sort of office protocol

4:59

and abbits like using the printer,

5:02

rather than about design, and

5:05

that got to a point that was so difficult

5:08

that he retired early. And

5:11

that was certainly a very strong indicator.

5:14

One of the things that is often the most

5:17

difficult for partners with dementing

5:19

diseases is finally getting

5:21

that diagnosis, even

5:23

though the diagnosis doesn't change much

5:26

since there's no treatment. It was

5:28

hard for Amy, and of course

5:30

it was hard for Brian, because

5:32

Brian knew as soon as he officially

5:35

got that diagnosis that he didn't

5:37

want to let this go on forever. We

5:40

spent a long weekend crying and

5:42

doing very little else, and

5:45

then Brian made it clear that he

5:47

had given this a lot of thought. He had also thought

5:49

about these issues beforehand, only because

5:52

he was somebody who was very interested in right

5:55

to life and right to die

5:58

and general sort of issue is of

6:00

human agency and autonomy.

6:03

And he said to me, I

6:06

have seen the Alzheimer's long goodbye

6:09

close up. We

6:11

had a very close family friend who went through

6:13

it for a number of years. He said,

6:15

that is not for me. I would rather

6:18

die on my feet than live on my knees

6:20

and you're going to help me because you love me,

6:23

And he was right. What was your first reaction

6:25

to that? Though? My first

6:28

reaction was to cry some more and

6:30

tell him that if

6:33

he thought at all that he did not

6:36

want to end his life earlier

6:40

than when Alzheimer's would take him, which

6:42

would be quite a long time, I

6:44

would take care of him. I would protect him, I

6:46

would look after him. And he

6:49

was very very clear he

6:51

wasn't that adamant, and that never

6:54

changed. That never changed for a second.

6:57

And so he was adamant. But and

7:00

you said, yes, I love you. I

7:02

will do what you need me to do.

7:05

I did. Time for a

7:07

quick break.

7:23

We live in a country that often values

7:26

life at any and all costs

7:28

over a good, peaceful, and

7:31

dignified death. Brian

7:33

wanted to end his life on his own terms

7:36

before the real suffering said in not

7:38

just for him, but for his entire

7:40

family. He had

7:43

no way to do that here in

7:46

this country. He had no way to

7:48

avoid what he called the law

7:50

goodbye. It was impossible

7:53

to do here. There is there is no

7:55

option in the United States for somebody

7:57

with a dementing disease period that's

8:00

that's the end of that story. If you can

8:02

demonstrate with the physician's help

8:04

that you have no more than

8:06

six months to live, and you can

8:09

get the doctors to verify that you have no more

8:11

than six months to live, which is a pretty narrow

8:13

window, then you can apply in

8:16

those nine states. And

8:18

by apply, I mean usually have two

8:20

in person interviews and one written

8:22

statement that you would like to end your

8:24

life while you have the capacity

8:26

to do that, and if you have the capacity

8:29

to do that, and you can make arrangements.

8:32

Having become a resident of that new

8:34

state and found doctors who will help you

8:37

in that new state, it seemed

8:39

to me to be an impossible window for us

8:41

to get through. And also because

8:43

Alzheimer's, although terminal, is

8:46

not terminal you know,

8:48

in the next few months after a diagnosis,

8:50

it's terminal. Over the course of five,

8:53

six, seven, eight years,

8:56

Since ending his life would be impossible

8:58

in the United States, Amy started

9:01

looking abroad. I

9:03

did a lot of reading. I asked

9:05

as many useful questions

9:08

of Google that I could come up with,

9:10

and eventually that directed me towards Dignitas,

9:14

whose motto is life with dignity,

9:16

Death with dignity. And

9:18

that seemed promising. In

9:21

contrast with the United States, Dignitas

9:24

in Switzerland does not make

9:26

you jump through dozens of hopes. There's

9:30

not a lot that is required. You

9:32

apply first for membership, which

9:34

is just to support the organization,

9:37

which is a nonprofit organization. And

9:40

then if you make the application to

9:43

go through the process, there's a gathering

9:45

of medical records, and Brian

9:48

was required required to write an autobiographical

9:51

statement, and

9:53

you know, this is quite a bit of gathering of records.

9:56

And then at some point you begin to have

9:58

some telephone intervi use and

10:01

then you receive a provisional

10:04

green light, at which

10:06

point you begin to make plans to go to

10:08

Zurich, at which point there will be

10:11

two separate interviews to

10:14

check on your state of mind and

10:16

your decision making capacity, and

10:18

also to offer you the opportunity

10:20

repeatedly to change your mind. And

10:23

Brian didn't waver at any point, right,

10:26

No, he knew exactly what he wanted. I

10:28

mean this is also pabably characteristic

10:30

of him as a human being. You write about that a lot

10:32

that he just he like, he made

10:34

very clear, cound decisions. He always sew what he

10:36

wanted. He was a hard man to stop

10:39

and largely fearless. So

10:42

you make the plans and you go over there.

10:44

What what was his condition

10:47

like in his state of mind as

10:49

you're going into this. How badly had

10:51

the disease progressed at this point? Well,

10:54

it was certainly problematic for

10:56

him, and you know, his independent

10:59

life. He got lost in the grocery

11:01

store one time. He

11:03

was having some trouble with the names of all

11:06

the grandchildren. But his

11:08

state of being as the person

11:11

that he was and his capacity

11:13

to make decisions had not altered. I mean,

11:15

for example, he got lost in the grocery store, he

11:18

made a decision, he put his grocery

11:20

cart to one side, and he drove home

11:23

and said to me, I got lost in the grocery

11:25

store. I left the cart there, So that

11:27

was an accurate description of what had

11:29

happened. And I said,

11:31

well, what should we do next, which I think

11:33

is probably not normally what people say to somebody

11:35

with Alzheimer's. And he said, well, let's

11:38

let's forget about the groceries. But it turns out I

11:40

also left my key, my house

11:42

keys there, so let's go back and get that. So we went

11:44

back and got that. So

11:46

you know, he was still very much Brian,

11:49

but there was certainly a lot of fraying

11:52

of sort of his cognitive abilities.

11:55

But he was still him. He was still the person

11:57

that you fell in love with, this dey

12:01

in terms of his judgment and his discernment.

12:04

Absolutely what did

12:06

he want a good death to look like? And I think that's

12:08

something that we don't talk about nearly

12:10

enough in our culture, like

12:12

what should a good death look like? I

12:14

think that depends entirely on the

12:16

person experiencing it. For him,

12:19

he wanted it to be peaceful and painless,

12:22

and he wanted me by his side. Amy

12:26

and Brian went shopping for stationary to

12:28

write goodbye notes. They found

12:30

some with snoopy on it for Brian to write

12:32

to the grandkids who had nicknamed him Babu

12:36

wrote notes to everybody

12:38

else in the extended family. And

12:41

we had a lot of visits from

12:43

the extended family during the last

12:46

two months of his life, you

12:49

know, lots of dinners, lots of get togethers,

12:51

lots of business, lots of walks. From

12:56

January,

12:58

Amy and Brian flew to Zurich. They

13:01

treated themselves to business class, had

13:03

a glass of champagne and made

13:06

a toast. When they landed

13:08

in Zurich, they traveled to a small and comfortable

13:10

apartment that Dignatos keeps for patients.

13:14

Brian lay down, Amy

13:16

held his hand. It

13:19

is completely physically painless.

13:22

It is very peaceful. The atmosphere

13:25

is very tranquil and

13:27

supportive. Aside

13:29

from the fact that you have to fly thousands

13:32

of miles away from home, it is

13:34

quite comfortable. And do you feel

13:36

safe? And I

13:38

don't think the one could ask for more in

13:41

that sense. Amy writes

13:43

in her book that she wrapped her arms around him

13:45

and kissed his forehead like he was a baby,

13:48

her brave boy gone on a long journey.

13:52

Thankfully, Amy wasn't alone

13:54

that day. A friend

13:56

of Amy's had flown to Zurich so that Amy

13:59

would have some to travel back with her to the

14:01

United States. As

14:03

a kind of friend you want to be and the kind of

14:05

friend you want to have, absolutely feel

14:08

it just feels like such the definition of friendship.

14:10

And so what

14:13

was what was that plane ride like for the

14:15

two of you? What did you did you talk

14:17

about? Brian? We mostly held hands

14:19

and cried. That feels like the threat

14:21

with that feels like what I would do it

14:23

feels, but still I want that person

14:25

there. I want that person to hold my hand and cry

14:28

with me. Her job, as I understood

14:30

it, was not so much to cry with me on the way

14:32

back, although that is a percent what we

14:34

did. But her job is really to make sure I didn't

14:36

miss the plane. I don't

14:39

think I was, you know, functioning

14:41

at my peak, and I thought I could

14:43

use all the help I could get. Time

14:48

for a quick break

15:00

m When Amy got home from

15:02

Zurich, she thought she might just retreat into

15:04

herself, carl into or bad,

15:07

shut out the world, but

15:09

instead she got to work.

15:13

See, when Brian made his decision to end his

15:15

life, he asked two things

15:17

of his wife. He asked her to

15:20

help him figure out how to do it, and

15:22

he also asked her to write about it.

15:25

Well, Brian wasn't telling me to write it because

15:27

he knew that's how I processed things. He was

15:29

telling me to write it because he thought it was important

15:32

and that people should be encouraged to have conversations

15:35

that had some meaning and content about

15:37

the end of their lives. And

15:40

he thought that my writing about

15:42

it and publishing about it might be helpful.

15:45

I was making notes as we were going along,

15:47

because if you are taking care of

15:49

somebody with a chronic or acute

15:52

or fatal illness, you've got

15:54

a lot of doctor's appointments, You've got a lot of medication,

15:56

you've got a lot of supplements, you've got a lot of things

15:58

that you have to a lot of boxes

16:01

you have to tick off. So I was making

16:03

notes all the time. They were

16:05

not necessarily they

16:07

were not at all for the purposes

16:09

of writing a book. They were just to keep track

16:11

of what was happening in our life. Afterwards,

16:13

I began to organize my writing a little

16:15

bit more and

16:18

began to look at events and write

16:20

more about them in a more storagelling

16:22

way. Did you feel close to him while you were

16:25

writing it? Oh? Yeah, it turns

16:27

out you can type and cry at the same

16:29

time. So I felt

16:31

very close to him. And I think

16:33

he would have been very pleased. His mother

16:36

tells me that he would be very pleased,

16:38

and his best friend tells me that he would be very

16:40

pleased with the book and

16:42

the reception to the book, And

16:45

I'm delighted to hear it. And do you think

16:47

that you've been You've been able to start these kinds of conversations

16:50

about what a dignified and a

16:52

good God looks like. Well,

16:55

I hope so. The emails

16:57

that I get from strangers

17:00

indicate to me that this is

17:02

a topic of enormous interest

17:04

to people, and that far more

17:06

people grapple with this than I would have thought

17:10

when the number of emails I've gotten

17:12

from people saying my

17:14

wife had to go to Dignitas by herself.

17:16

She had a ls but we had small children

17:19

and I had to take care of them. Things like that,

17:21

that they're just extraordinary

17:23

letters of great pain

17:27

and great suffering and an

17:29

enormous wish that things should be different

17:31

for people, and also a

17:33

real conviction that it's important that people

17:35

talk about the end of life. Yeah, I don't.

17:38

I think that it is just such a tremendous

17:40

act of love to

17:42

be with someone and give them the kind

17:44

of death that they that they want. That's

17:47

one of your lines that really

17:50

got me was grief is the

17:52

price that you pay for love alas,

17:55

Yeah, I think so. And that's

17:57

not just true if somebody has a terminal illness.

18:00

No, no, it's true. It's

18:02

true across the board. I really

18:04

want to share this book with as many people as possible

18:06

because I think it is something that all

18:09

of us need to be talking about more. And

18:12

beyond that, it's also a beautiful love

18:14

story and I think

18:16

that we could we can use a lot more

18:18

of those right now. So thank you

18:20

so much for writing it. It felt important

18:22

to me and it was important to him. So I'm glad

18:24

that we were able to do

18:26

it, and I'm glad I was able to write about

18:29

it. And it really touches

18:31

me this so many people seem to

18:33

respond to it. This

19:59

episode was hosted reported by Joe Piazza,

20:02

Very special thanks to Amy Bloom.

20:05

Committed as produced by Ramsey Event. The

20:07

executive producers are Joe Piazza and Tyler

20:10

Klang. Theme song by Tristan

20:12

McNeil. For comments, suggestions,

20:14

or to be part of the show, give us a call

20:16

at four zero four that's

20:21

four zero four seven

20:25

three or send us an email at Joe at

20:27

Committed podcast dot com. That's

20:30

j O at Committed podcast dot

20:32

com. Committed as a production

20:34

of iHeart Radio and produced in our studios located

20:36

in Atlanta, Georgia. For more podcasts

20:39

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