Want my fingers through your hair?
Please.
Straight back?
Taking care of Bailey has taken
more of a toll on our relationship
than I thought it would have.
This routine, it goes on seven days a week
365 days a year.
My day typically starts at about 5 AM.
Right when we wake up we'll hold each other,
I'll rub on his head.
Then I'll get up.
Then I cath Bailey and that means
I empty out his bladder and then I get the bag
and I clean it in the bathroom.
I'm gonna move this, alright?
Getting dressed takes a little bit.
I'm gonna open up these ones, okay?
By this point, Bailey's stomach is really hurting.
The only thing that he can really get down
is a nutritional drink.
He'll probably have about one of these a day.
When Bailey's taken care of,
that's when I'll try to take my me time
and I'll go have a cup of coffee.
As his caregiver, I'm the one that's responsible
for making sure he gets his medicine.
One for spasms, one for pain and nausea.
You pick a beat, then you can add the synths.
Bailey spends most of his day just chilling at the house
playing with his dog.
He loves movies.
That's the way he distracts himself.
Alright, let's go.
When I'm leaving, I have to make sure that
the cath bag is packed, the jelly, the catheters, the bag.
Letting down the ramp right now.
Bailey will roll in.
I make sure he's secured.
It's very exhausting.
It's a lot worse when I feel like I don't have
the support and compassion from Bailey.
Typically if Bailey and I have dinner,
it'll be at about six o'clock.
Cooking, it's exhausting.
It's not only her cooking all of the food
when it's then her also having to feed both of us.
They have guacamole and stuff in there
if you wanted me to put it on it.
And then clean everything up.
It's easier to just make a ham sandwich.
By about 8:30, we're both pretty spent
and that starts the process of getting him in bed.
I pick him up, get him in bed.
I'll undress him, position him,
and then I try to at least kiss him goodnight
but there are some nights where we just
get on each other's nerves and I'm just like,
you know what?
I love you.
Taking care of Bailey has definitely taken a toll.
I haven't had a full night's sleep in three years.
(intense music)
Okay, so even if you knew then
that you were gonna hit this rough spot here
where you were frustrated, exhausted,
felt unappreciated, worried, and being called names,
spit on, all the things that happen
when there's frustration,
you would still have moved forward?
I would have moved forward.
I would have gotten better help, better guidelines.
Now you say that he is extremely angry all the time.
Extremely.
At you or just at his situation, circumstances, what?
He is angry at everything.
His situation, me, the people that have claimed
to be in his life.
He's been angry with his family,
he's just angry.
One of my areas of specialization when I did practice
was in what's called behavioral medicine,
which had a lot to do with chronic disease management
and my specialty within that was brain
and central nervous system so I've dealt with
this kind of situation a lot
and I'm guessing that he feels like he's a huge burden
and that everybody in his life would be better off
if he wasn't there.
Not so much that he would be better off if he was dead,
but everybody else would be better off
if he was just gone.
He hates himself so much.
He has told me he wants me to help him
go into a nursing home.
Is there a part of you that would feel
really guilty leaving him?
Of course I would feel very guilty leaving him
but Bailey and I have talked about that.
He has made very clear, do not stick around
just to take care of me.
Do not stick around just so I don't go into a nursing home
or so I don't die.
If you want to leave, you go,
and I have told him, when I am ready to go, I will go.
But that's just words.
You don't really feel that way, do you?
You feel like if you would leave
that you would be selfish, hedonistic,
you would feel like you betrayed him and let him down.
100%.