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When the Time Comes (Part I)

You and your spouse each sign an advance directive. Like many people, you request
that you not be kept alive by artificial means. You name each other to make medical decisions
when you are unable to do so yourself. The chances are one of you will have to face making the
final decision for the other. But how do you tell them to end the life of the one you love?
My husband Bob has a cold. It doesnt seem as bad as the cold hed had a few months
earlier, but he is wearing his coat and hat in the house, and he isnt washing or shaving. I get
upset and yell, I cant bathe you. I cant do everything for you.
And then I stop to think: what am I doing? This isnt like me; I always try to help him.
Its a holiday weekend. His doctor is not available Saturday, Sunday, or Monday. By
Tuesday afternoon there is still no return call. I help him get his shoes on and drive him to the
emergency room. They take us right away. The say it looks likes pneumonia and he is
admitted. Because I dont drive in the dark, I leave him in their care and head home. I call one
of my friends from church. He calls another Elder. Later that evening we return to the hospital
together. They give him a blessing. Bob looks half dead.
Either it is the blessing or the drugs, but by the following morning he is a lot healthier.
The nurse takes out his dentures. He sits grinning, toothless, with a weeks worth of gray
stubble. He tells me funny stories he heard from the nurses.
The following day he is weak again. They try to get him out of bed. He is unable to
stand. He barely eats. The next two days when I visit hes asleep. I cant wake him. I sense
something is wrong, but also think the medications they have him on must be causing this.

My daughter Pam calls daily to check on things. On Saturday she meets me at the
hospital. When Bob does not respond, she calls in a nurse. The nurse cannot wake him but tells
us he is fine. We wait hours for the doctor. When the doctor arrives, he cannot wake Bob either.
He blames it on Bobs age and his recovery from pneumonia. It is only after Pam insists
something is terribly wrong, that the doctor orders some tests.
The hospital puts a feeding tube through his nose for nutrition. Two days of tests later,
Bob is still not responding or eating on his own. When the doctor arrives today I plead, What
else can be done to help him?
There is nothing much else we can do. Perhaps you should consider putting him into a
nursing home with a permanent feeding tube, he answers.
When I burst into tears the doctor responds, I didnt mean to upset you.
Good God, how could this news not upset me?
When most people cry they shed tears. With me mucus pours from my nose. A male
nurse hands me wads of tissues. Then he gives me a full box. Then, because he could see I
need it, he retrieves yet another full box.
I receive a call at home. They tell me Bob is being sent to another part of the hospital
where they are familiar with stroke. What stroke? No one officially explains to me that Bob
had a stroke. Is this why the doctor says to consider a nursing home? Pam and I with help from
her nurse friend, have the doctor dismissed from the case.
My other daughter flies out from the east coast to be near her dad. I am really worried
about her. Audrey is Daddys Little Girl. On her wedding day she says, Dont play Daddys

Little Girl or Ill cry my eyes out. But now she is strong...for me. She says she did all her
crying before she arrived.
The right side of Bobs body is paralyzed. He cannot speak or swallow. Yet he manages
to pull the nasal tube out every chance he gets.
Over the next two weeks we lose count on how many times my daughters and I make the
decision to remove his tube and let him go. But glimpses of my husband return and we back out.
Audrey returns home. When she calls I give her the grim news that her father has not
improved and we must let him go. She says she waved goodbye to her Dad on the way out.
When he waved back she knew it was probably for the last time. What a brave girl.
I have this Guardian Angel, or Spirit, or Genie. Sometimes she makes things stop
working for my benefit, or to protect me its happens so often I no longer dismiss it as
coincidence. After we make this final decision, I sit down with Bob. I tell him about the stroke.
I explain that due to the paralysis, he has a feeding tube because he is unable to eat or swallow
properly on his own. He doesnt hear a word, turns out his hearing aide isnt working.
In the meantime arrangements are made to have a permanent feeding tube place in Bobs
stomach. A caseworker from the hospital calls to set up a conference about Bobs care.
The attendees of the conference are Dee, the casework, Pam, myself, plus Bobs two
doctors. Dr. M is Bobs neurologist. He is a big kind man and the only one who tries to explain
Bobs stroke to us. Dr. G is Bobs new lead doctor.
Dee, the caseworker is in agreement with me about the mishandlings of the first doctor.
Yet, she herself is negative about everything. She tells us, You are mistaken when you say Bob

is aware and can communicate. She reminds us that Bob is 88 years old with severely blocked
arteries and is a good candidate for another stroke. She spouts all of the problems of surviving
on a feeding tube and says it will all be downhill from here.
Dr. M. talks of Bobs past condition before the stroke and his present condition. He gives
his opinion that Bob can be rehabilitated.
Dr. G, the replacement for the doctor we let go, is brand new to the case and doesnt say
much.
Pam and I sit and listen to them all, but of course we cannot let go of hope that Bob can
improve.
After the meeting, Dr. G comes to check in on Bob. She attempts to speak to him. He
appears to be in a stupor with his mouth hanging open. She says, When they have that look
theyve had enough. He really wants to go.
How can I let him go? I love him so much. 63 years of marriage, I dont think theres
enough Kleenex in the whole hospital for this.
Dr. G. leaves and the negative caseworker comes in. She tells Bob he will be going to
Hospice. Just then Dr. M arrives. I can see the disapproval on his face as he walks out of the
room.
No one remembers to cancel Bobs operation for the gastric feeding tube. I watch as two
orderlies come in and wheel him away. I dont try to stop them nor do I tell them Bob is going
into Hospice. I cant open my mouth to say anything.

Why it is no one tells them of the change in plans? This is the second time something
stops us from ending it. The next day Bob is moved to a nursing home.
Bob has an expression he uses whenever he disagrees with you, Who Sez?
The caseworker says we are dreaming when we say Bob understands us. The next day
while in Bobs room, the television is on. With his good hand he manages to scribbles on paper
58. He points to the TV. Channel 58, the Move Channel, is his favorite station; it has no
commercials! Pam and I jump for joy. Who Sez he doesnt understand anything?
Although he is in nursing home, it is just a matter of time before the caseworker will call
to tell them to put him on Hospice. A young therapy worker with the right attitude says, We
have received no orders about that. This is a rehab facility. We're going to rehabilitate him.
Bob uses every bit of strength to sit up or pull himself straight when he falls sideways.
Who Sez he wants to die? Now I am happy they put in the more-permanent feeding tube.
Once again, I explain to him his situation. I tell him the gastric feed tube is what is
keeping him alive. I ask him if he wants it removed. This time he lifts his good arm waving it
sideways, giving me a definitive No."
Good, I say, Because I dont want you to go.
Things go smoothly for weeks and then...I just know it is time to let him go. I decide to
go tell the doctor, who I know is in the building. I will call the girls later.
I let go of Bobs hand and stand, only I cant leave. I am blocked in a corner. A heavyset patient sits in a wheelchair in front of me. His feet are up against the bars of Bobs bed. His
arms hold onto the back of my chair. No matter what I do, I cant force him to move. There is

a large oxygen tank on my left. There is no way to get out. I sit back in my chair. I am
between laughing and crying. However, I get the message. Angels, Guides, Spirits,
whatever you want to call them. I guess they all joined forces this time to stop me. Within days
Bob shows improvements again. This time even some of his speech returns.
It is now 5 months since the stroke. Bob still needs the gastric feeding tube, although
they detach it daily from noon until 4 PM. I go with him to the dining room. I have lunch. He is
allowed a small amount of mashed potatoes and gravy. They wont allow him to have anything
more solid than that, as it still too hard to swallow. The female RNAs who assist with his
monitored eating joke with him and he laughs. However, its the only time he shows much life
lately. He no longer wants to watch T.V. or read. He is unable to maneuver the wheelchair with
one hand.
A month later: I dont know whats happening. Bob hardly says a word any more. I am
admitted into the hospital myself for some tests. I dont see him for four days. Yet when I visit
today he doesnt ask me a single question, nor does he talk at all. It seems each day his speech is
getting worse. He knows what he wants to say, but he either cant find the words, or its hard for
anyone to understand him, and then...
Over the months a woman patient, Ginny Rae and I have become very friendly. She tells
me, After you left yesterday, Bob perked up. He had a long conversation with the two male
nurses. When they ask him where he wanted to go he answered clearly wherever my wife
went.
Today when I arrive his voice is good. There isnt much to talk about since we are
together most the time. All in all I call it a good day.

Just days later when I arrive Bob speaks in a very natural voice. He tells me all about his
roommate. His speech is good all day. He has another swallow test and is able to answer all
their questions. The test goes well. The results show he still cant eat solid foods. He can have
liquids now that dont need to be thickened Great day.
Today starts out O.K., but by now I should know better than to expect three good days in
a row. A male nurse tries to wedge a pillow behind Bobs shoulder. He screams. When they try
to get him to use the pedal machine to exercise his legs, he has pains in his ankles, later pains in
his knees and then pain his back. He is moaning, loud, painful moans. Nothing I do helps. I
start to weep. No Kleenex handy, so I use a lot of rough paper towel from the bathroom. Im
unable to turn off the waterworks.
I call Pam to see if she can visit him so he wont be alone. She cant get down until
evening. She tells me to ask the nurses to keep him occupied until then. She orders me to do
something fun. She is right. I need a day off; I am not much help to him blubbering.
Since the second swallow test there are no more good days. The nurses take Bob to the
dining room two or three times a day. Im there at lunchtime. He only eats a couple of
spoonfuls of food. But I am glad he gets out of his room and is with other people part of the
day. When I arrive today I hear his moans from way down the hall, one moan with each breath.
I know we are not being punished but it sure feels like it. I know from problems in our
past that God and his angels are always there, but Im running out of Kleenex. What is Bob
thinking? What is he feeling? He is never one to express his feelings much. Now its hard for
him to speak at all.

A woman I know had a similar stroke when she was younger. She tells me it was painful
for her to see the hurt in her familys eyes. So I try my best not to let my sadness show.
Actually, when Im around him Im feeling better anyway.
I hear that people have a spurt of good health shortly before the end. I recall the last
time I visited my father in the hospital: It is evening time. He is all smiles and jovial. I think to
myself hes the handsomest man Id ever saw. The next day when I call to speak with him I am
told he is in an oxygen tent. He died soon after.
I think the day of the third swallow test is Bobs spurt. It is the best day since the stroke.
Since acing the swallow test he isnt interested in eating. If given food, he pushes the
dishes away. I tell him we had been hoping and praying for six months that he would be able to
swallow real food, so he would be safe if there are complications with the gastric feeding tube.
He says he wasnt aware of that.
For days Bob continues making sounds with every breath; sometimes like moans and
sometimes more like yelling. The doctors and nurses try everything to help. They offer pain
medicine, but he says he isnt in pain. I am praying for solace to handle it better. When I beg
him to please stop he says, I cant help it.
Finally they try another medication. It is for agitation. The new medicine takes hold. The
moaning stops and he is speaking more.
Days later the heat wave breaks. We sit outside in the olive garden all afternoon. We
hold hands and enjoy the breeze. As I wheel him back into the building he says clearly, This
was a wonderful day, and I feel the same way.

Today when I arrive he tries to say something. He cant get it out. He tries a few more
times and nothing comes out but a noise; he laughs. By the end of the day it isnt so funny. He
is very agitated. He keeps pulling on his gastric tube. Ginny Rae and another patient named
Ron try to calm him down. Ron pats his hand to soothe him.
Today when Bob see Ron he blurts Ron! Not a word after that. Bob is agitated again,
all day. Ginny Rae ducks into Bobs. Hows it going? she asks.
Holding back tears I walk out of the room. She follows. We are talking in the hallway
when a nurse informs me. Your husband is crying.
I return to Bobs room. 63years of marriage, two of our daughters died at a young age. I
am sure he cried by himself, but I never saw tears rolling out of his big blue eyes until now.
I take a short walk outside. When I return Bob is covered with liquid. It is spilling all
over from the PEG tube. The nurses and nurses aides all try to help.
The charge nurse says, We need to replace the device. Its a very simple operation. It
wont take very long.
I blurt, No! Dont put it back.
From that point on, Bob is officially on Hospice. They give him medication. Most of the
time he sleeps peacefully; I hold his hand. I tell him I love him.
09/08/2009: Pam comes and spends some time alone with her father. She leaves around
5 PM. He starts to run a fever shortly after. A nurse who knows I dont drive after dark offers
to drive me home when her shift ends at 11. A friend can drive me back the next day. But I
decide to stay all night.

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At 3:30AM I call Audrey. It is 6:30 her time. I put the cell phone to Bobs ear. She
talks to her dad. Then I go back out to the couch in the lounge area. At 5:30AM a male nurse
comes in Mrs. Cheek, he says, your husband is gone.
I say goodbye and kiss him. I tell him our daughters Barbara and Carole will be there to
meet him.
There are no tears, no Kleenex.
I thank God for the extra seven months.
God how I love you Sweetheart.
Thank you Lord for the borrowed time.
Thank you for the wonderful day.
You sign an advance directive and so has your loved one. Now youre faced with the
final decision. What do you do? No matter what you write ahead of time if its not the right
time, something or someone will stop you. Whatever you decide will be right.