Fifty-eight year old "Ronald" was referred to hospice because of prostate cancer. Ronald recently moved back in with his wife, "Inga". They have been married for over thirty years, but have been separated for eighteen months due to his addiction to methamphetamines. Because of Ronald's recent diagnosis of cancer, Inga allowed him to move back home so that she could help care for him.
Inga says that Ronald has been using drugs for over thirty years. He is on disability because of his addiction. Inga has her own house cleaning business and works three days a week. She feels that she can care for Ronald with assistance from their two adult children, who have agreed to help as needed. She also plans on hiring an attendant to supplement the hours the two children are not able to cover.
Ronald looks twenty years older than his stated fifty-eight years. He has lost all of his teeth because of his drug use. He is on a soft diet because he cannot wear his ill-fitting dentures.
Inga feels obligated to help Ronald. The two children are willing to help their father in order to support their mother. Ronald has lost the respect and love of his family. Ronald has lost so much more, but still continues to use drugs. His addiction is that strong.
Using drugs is the life that Ronald knows. About once a week, he disappears with his drug buddies and will be gone for three days. He returns home dirty and disheveled with no explanation to where he has been. Likely the only way he will stop his drug use is when the cancer gets to a point where he can no longer walk and is unable to leave the home.
Hospice may discharge him as he is not following the plan of care. That is one criteria that patients agree to when they are admitted to our program. It is difficult to help someone when they won't help themselves. Sadly, addiction is a family disease.
ADDICTION
He's been using for years.
It's apparent he still is.
He says he's been clean for months,
but his behavior exposes the truth.
He disappears for days at a time.
No one knows where he's gone.
He returns home disheveled and dirty.
It's easy to figure out why.
He has tubes that need to be sterile;
bandages that need to be changed.
He's been on hospice for less than a month.
He's missing for much of that time.
One says you have to hit bottom.
He's definitely on his way down.
There's not much else for him to lose.
He's already lost
his job; his health; his family.
He's miserable when he's home.
Withdrawal leaves him nauseous and weak.
He's risking it all for some feigned pleasure.
Sadly, methamphetamines are in control.
Addiction.
Monday, May 30, 2011
Friday, May 20, 2011
ASLEEP
"Al", thirty-five, suffers from lymphoma that has spread throughout his body. Al lives with his wife and two young daughters in a two story townhouse. There are no bedrooms downstairs and Al spends his days sitting on the living room couch. He can no longer manage the stairs and is using the couch as his bed. He has refused a hospital bed and is content to stay on the couch.
Al has rapidly declined this past week. I made a visit today to see him and he looked jaundiced, pale and weak. He was sitting up so straight on the couch. When speaking with him, his eyes would glaze over and his eyelids would start to droop. He had difficulty focusing because he was so tired.
Several times Al fell asleep sitting up. He would jolt himself awake and open his eyes wide to prevent himself from falling back to sleep. He would slap his cheek to keep himself awake. Al's parents were present and caring for him while his wife was out running errands. Al's parents speak only Cantonese, but one could see from their body language; anguish and grief.
I encouraged Al to lie down and take a nap. He said he wanted to stay awake as his parents and wife feared that if he fell asleep, he would not wake up. I encouraged Al to tell his parents that sleep does not cause death. Sleep is the natural progression of the disease as his body needs rest to fight the cancer.
Al could not focus enough to translate the information to his parents. Whereas in the past, it worked well to have him translate. In hospice we always offer to have an interpreter, and at each offer, Al stated that he could translate.
I asked Al if I could return in two days with an interpreter in order to speak with his wife and parents about disease progression and expectations. Al was receptive to that idea.
I have arranged for an interpreter to accompany me for my next visit in two days. Hopefully I will be able to offer support and clarify disease progression with the family. Also I hope to learn and understand their cultural beliefs and support that as well.
ASLEEP
He fights to stay awake.
He does not want to fall asleep.
His eyes shroud over and slowly droop.
He needs to get some rest.
His family fears he won't wake up
if he closes his eyes or lays down his head.
They believe sleep will cause his death.
They just don't want him to die.
He slaps his cheek to keep awake
when he feels the pressure to doze.
He won't lay down, but sits up straight.
He strives to not disappointment them.
He speaks some English; his family does not.
Communicatiopn has been slow.
But now he can no longer translate for us.
The disease has robbed him of precious strength.
He told me that he wants it over.
He's tired of the fight.
But he'll continue to honor his family,
until he falls asleep.
Al has rapidly declined this past week. I made a visit today to see him and he looked jaundiced, pale and weak. He was sitting up so straight on the couch. When speaking with him, his eyes would glaze over and his eyelids would start to droop. He had difficulty focusing because he was so tired.
Several times Al fell asleep sitting up. He would jolt himself awake and open his eyes wide to prevent himself from falling back to sleep. He would slap his cheek to keep himself awake. Al's parents were present and caring for him while his wife was out running errands. Al's parents speak only Cantonese, but one could see from their body language; anguish and grief.
I encouraged Al to lie down and take a nap. He said he wanted to stay awake as his parents and wife feared that if he fell asleep, he would not wake up. I encouraged Al to tell his parents that sleep does not cause death. Sleep is the natural progression of the disease as his body needs rest to fight the cancer.
Al could not focus enough to translate the information to his parents. Whereas in the past, it worked well to have him translate. In hospice we always offer to have an interpreter, and at each offer, Al stated that he could translate.
I asked Al if I could return in two days with an interpreter in order to speak with his wife and parents about disease progression and expectations. Al was receptive to that idea.
I have arranged for an interpreter to accompany me for my next visit in two days. Hopefully I will be able to offer support and clarify disease progression with the family. Also I hope to learn and understand their cultural beliefs and support that as well.
ASLEEP
He fights to stay awake.
He does not want to fall asleep.
His eyes shroud over and slowly droop.
He needs to get some rest.
His family fears he won't wake up
if he closes his eyes or lays down his head.
They believe sleep will cause his death.
They just don't want him to die.
He slaps his cheek to keep awake
when he feels the pressure to doze.
He won't lay down, but sits up straight.
He strives to not disappointment them.
He speaks some English; his family does not.
Communicatiopn has been slow.
But now he can no longer translate for us.
The disease has robbed him of precious strength.
He told me that he wants it over.
He's tired of the fight.
But he'll continue to honor his family,
until he falls asleep.
Sunday, May 15, 2011
MOUTHS OF BABES
Thirty-nine year old "Carl" was diagnosed with brain cancer eight months ago. He underwent chemotherapy that was not successful. In the more recent weeks, he is struggling with finding the right words to say. Carl totally understands what is said to him, but cannot process his thoughts easily.
Carl lives with his wife, "Linda", and their two young children; ten year old "Danny" and seven year old "Shawna". Linda and Carl are both school teachers and have communicated so clearly with the children the truth about what is going on with their father.
I sat down and met with the two children to see how they were coping and to offer them support. I was totally impressed by the maturity of both of the children, but especially awestruck by the questions posed by Shawna.
Throughout all of this, Carl remains upbeat and continues to smile. The family uses humor to cope in such a beneficial way. They are all aware that Carl is declining, but choose not to let negativity have control. They also honor each other in their individual grieving needs.
When asked about any spiritual or religious beliefs, Carl's sister, who was present during the visit, said, "We were raised loose Lutherans". The family have a belief in God and the afterlife, but do not identify with any particular church community.
I know the family is facing difficulties, but also know that they will come through and be okay in the end because of the tremendous support they have for each other.
MOUTHS OF BABES
He's been sick for months.
The cancer has invaded his brain.
It's hard for him to process a thought.
He struggles to find the correct words to say.
She knows things are different now.
Her daddy is not quite the same.
He can't do things like he did before.
He's sleeping a lot when she wants to play.
She says that cancer is lonely.
The other kids don't understand.
She can talk with her mommy,
but wishes she could talk to her friends too.
I sat with her and talked about grief,
telling her that whatever she feels is really okay.
I asked if she had any particular questions,
aware that children want only the truth.
Children will ask what they want to know.
They are direct and straightforward that way.
She did have a profound question to ask,
"When will my daddy die?"
I spoke about the end of life process,
trying to help her understand.
Daddy may stop eating and drinking.
Typically it is a slow decline.
She listened closely to what I said.
She sat quietly letting the words sink in.
She still had one more question in mind.
"How do we tell when daddy has died?"
Carl lives with his wife, "Linda", and their two young children; ten year old "Danny" and seven year old "Shawna". Linda and Carl are both school teachers and have communicated so clearly with the children the truth about what is going on with their father.
I sat down and met with the two children to see how they were coping and to offer them support. I was totally impressed by the maturity of both of the children, but especially awestruck by the questions posed by Shawna.
Throughout all of this, Carl remains upbeat and continues to smile. The family uses humor to cope in such a beneficial way. They are all aware that Carl is declining, but choose not to let negativity have control. They also honor each other in their individual grieving needs.
When asked about any spiritual or religious beliefs, Carl's sister, who was present during the visit, said, "We were raised loose Lutherans". The family have a belief in God and the afterlife, but do not identify with any particular church community.
I know the family is facing difficulties, but also know that they will come through and be okay in the end because of the tremendous support they have for each other.
MOUTHS OF BABES
He's been sick for months.
The cancer has invaded his brain.
It's hard for him to process a thought.
He struggles to find the correct words to say.
She knows things are different now.
Her daddy is not quite the same.
He can't do things like he did before.
He's sleeping a lot when she wants to play.
She says that cancer is lonely.
The other kids don't understand.
She can talk with her mommy,
but wishes she could talk to her friends too.
I sat with her and talked about grief,
telling her that whatever she feels is really okay.
I asked if she had any particular questions,
aware that children want only the truth.
Children will ask what they want to know.
They are direct and straightforward that way.
She did have a profound question to ask,
"When will my daddy die?"
I spoke about the end of life process,
trying to help her understand.
Daddy may stop eating and drinking.
Typically it is a slow decline.
She listened closely to what I said.
She sat quietly letting the words sink in.
She still had one more question in mind.
"How do we tell when daddy has died?"
Sunday, May 8, 2011
HOW DO YOU?
Twenty-nine year old "Faith" was diagnosed with breast cancer eight months ago. Even with chemotherapy and radiation treatments. her health continued to decline. Faith met with her doctor yesterday who told her that the treatment is no longer working as her cancer has spread. It was then when the doctor referred her to hospice, documenting that she was imminent.
Faith lives with her parents, "John" and "Diana" and her younger sister, "Annie". Faith is very close to her family. She also has numerous sorority sisters with whom she considers her extended family. Faith's co-workers are donating vacation time to where she has two months of continued full time pay she can use.
The nurse and I went out today to open Faith to hospice. She was sleeping and very lethargic during the visit. The family shared that Faith is sleeping a lot now. She is eating only soft foods supplementing her diet with a protein drink. It appears she has one to two weeks at most to live.
The nurse and I sat with Faith's parents and sister at the kitchen table. Diana was tearful, but when we spoke about her daughter's wishes regarding resuscitation, she totally broke down. Annie said that Faith told her that she would not want to ever be on life supports. John and Diana do not want their daughter to suffer, but had an automatic reaction to have everything done so Faith can live. They quickly came to the realization that there is nothing that can be done to give Faith a quality of life she would want.
When I asked John how he was doing, he replied, "I'm fine". He did not say anything more. Toward the end of our visit, I asked him again how he was doing. He repeated, "I'm fine." I stayed quiet for a moment. He then started to slowly share how he is so angry that this is happening to his daughter. Diana then added, "This is so unfair."
I wanted to comfort them, but there was not much I could say or do to take their pain away. They will have to grieve their daughter and hopefully, in time, will be able to process their feelings. It is just so sad. It brings up so many questions that have no answers.
HOW DO YOU?
How do you tell a mom
to make funeral arrangements for her daughter?
A daughter who was just starting to blossom.
Whose life had really only just begun.
How do you give comfort to a parent
whose tears so quickly flow?
Saying a benign, "I'm so sorry",
an ineffective three word phrase.
She was always full speed ahead.
Putting so much life in each of her days.
Did she know it would be cut short?
Did she know her time was limited?
How do you direct their anger
when they feel life is so unfair.
They say she did all the right things.
They keep asking, "Why her?"
How do you help them say goodbye
when they are not ready for her to go?
Too many questions that have no answers.
But then,
How do you?
Faith lives with her parents, "John" and "Diana" and her younger sister, "Annie". Faith is very close to her family. She also has numerous sorority sisters with whom she considers her extended family. Faith's co-workers are donating vacation time to where she has two months of continued full time pay she can use.
The nurse and I went out today to open Faith to hospice. She was sleeping and very lethargic during the visit. The family shared that Faith is sleeping a lot now. She is eating only soft foods supplementing her diet with a protein drink. It appears she has one to two weeks at most to live.
The nurse and I sat with Faith's parents and sister at the kitchen table. Diana was tearful, but when we spoke about her daughter's wishes regarding resuscitation, she totally broke down. Annie said that Faith told her that she would not want to ever be on life supports. John and Diana do not want their daughter to suffer, but had an automatic reaction to have everything done so Faith can live. They quickly came to the realization that there is nothing that can be done to give Faith a quality of life she would want.
When I asked John how he was doing, he replied, "I'm fine". He did not say anything more. Toward the end of our visit, I asked him again how he was doing. He repeated, "I'm fine." I stayed quiet for a moment. He then started to slowly share how he is so angry that this is happening to his daughter. Diana then added, "This is so unfair."
I wanted to comfort them, but there was not much I could say or do to take their pain away. They will have to grieve their daughter and hopefully, in time, will be able to process their feelings. It is just so sad. It brings up so many questions that have no answers.
HOW DO YOU?
How do you tell a mom
to make funeral arrangements for her daughter?
A daughter who was just starting to blossom.
Whose life had really only just begun.
How do you give comfort to a parent
whose tears so quickly flow?
Saying a benign, "I'm so sorry",
an ineffective three word phrase.
She was always full speed ahead.
Putting so much life in each of her days.
Did she know it would be cut short?
Did she know her time was limited?
How do you direct their anger
when they feel life is so unfair.
They say she did all the right things.
They keep asking, "Why her?"
How do you help them say goodbye
when they are not ready for her to go?
Too many questions that have no answers.
But then,
How do you?
Monday, May 2, 2011
GRAND ENTRANCE
Fifty-four year old "Randy" suffered from lymphoma. Randy was referred to hospice by his doctor because he was declining rapidly. Randy lived with his partner of five years, "James". James also suffered from cancer, although was in remission. Randy was very restless and needed assistance with all of his needs. It was difficult to carry on any meaningful conversation with him as he could not stay focused.
Randy and James have a wonderful network of friends who are totally devoted to them. There was always at least one or two friends in the home. They took turns helping James care for Randy. Randy's two adult children, his parents and three siblings all lived nearby. His family is very involved, loving and supportive as well.
Yesterday I went out to do a routine visit. I met with James, "Carol", Randy's sister and "Charles" a close friend. Randy was in a deep sleep in the next room. He had not eaten or had any water for almost a week. His breathing was shallow and it appeared that he was in a coma. His death was imminent.
Carol stated that today was Randy's ex-wife's birthday. She said that he will not die today as he would not want to upset the day for his children. He thought that this was a special day for his ex-wife and two children. She added that Randy was always thinking about others.
Carol said that Randy was very strong in his beliefs about wanting to help others. She thought he would die in the early morning hours after midnight so as to not taint his ex-wife's special day.
I heard this morning that Randy died today at 12:40AM. Why am I not surprised?
GRAND ENTRANCE
It was always a grand entrance
when he walked in through the door.
His personality was engaging.
His presence filled the room.
Life handed him some struggles.
A few disappointments along the way.
But the love of his family was strong.
He knew they were always around.
She said he wouldn't die today.
He would wait a little while longer.
He would not taint her special birthday.
He'd never do that to his kids.
His pulse was racing;
his breathing so slow,
but he hung on throughout the day,
even though they knew
his time was so near.
He often put others first.
He was gentle and kind that way.
So no one was surprised the moment he died.
They knew he chose that date; that time.
He waited until shortly after midnight.
He waited for her birthday to pass.
He knew then it was okay to go.
To make his grand entrance.
To cross over to the other side.
Randy and James have a wonderful network of friends who are totally devoted to them. There was always at least one or two friends in the home. They took turns helping James care for Randy. Randy's two adult children, his parents and three siblings all lived nearby. His family is very involved, loving and supportive as well.
Yesterday I went out to do a routine visit. I met with James, "Carol", Randy's sister and "Charles" a close friend. Randy was in a deep sleep in the next room. He had not eaten or had any water for almost a week. His breathing was shallow and it appeared that he was in a coma. His death was imminent.
Carol stated that today was Randy's ex-wife's birthday. She said that he will not die today as he would not want to upset the day for his children. He thought that this was a special day for his ex-wife and two children. She added that Randy was always thinking about others.
Carol said that Randy was very strong in his beliefs about wanting to help others. She thought he would die in the early morning hours after midnight so as to not taint his ex-wife's special day.
I heard this morning that Randy died today at 12:40AM. Why am I not surprised?
GRAND ENTRANCE
It was always a grand entrance
when he walked in through the door.
His personality was engaging.
His presence filled the room.
Life handed him some struggles.
A few disappointments along the way.
But the love of his family was strong.
He knew they were always around.
She said he wouldn't die today.
He would wait a little while longer.
He would not taint her special birthday.
He'd never do that to his kids.
His pulse was racing;
his breathing so slow,
but he hung on throughout the day,
even though they knew
his time was so near.
He often put others first.
He was gentle and kind that way.
So no one was surprised the moment he died.
They knew he chose that date; that time.
He waited until shortly after midnight.
He waited for her birthday to pass.
He knew then it was okay to go.
To make his grand entrance.
To cross over to the other side.
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