DENIAL

Our organization has a Palliative Care program along with the hospice program.   I went out to meet with “Jim”, and his wife, “Laura”, to admit Jim to palliative care.  Jim was diagnosed with Alzheimer’s Disease eight years ago.  He has been living in the memory care unit of a local residential care facility.  Laura lives nearby and visits Jim frequently. 

The moment I walked into Jim’s room, Laura shared stories about Jim’s work and his successful investments.  She stated strong appreciation for all that he has given her by his hard work.  She so appreciates that they have the funds for Jim to live in the facility where he is getting the best care.  She does not have to be his caregiver, but is able to be his wife; which is the best gift for both of them. 

Jim has been slowly declining and becoming weaker.  His appetite is declining whereby he has lost twenty pounds in the last three months.  Laura is trying so hard to do what she feels he would tell her to do, but then stated how difficult it would be to not select what procedures that are available. 

One can be in denial until the last moment.  It helps one cope when living through such an emotional and stressful situation.  I can be the Queen of denial myself, at times. 

DENIAL 

 

They have been married for over fifty years.

He was a successful businessman

which allowed her to follow her dream

of becoming an elementary school teacher.

 

“He has always taken care of me

by working hard and investing well.

Now that he no longer understands,

 it is my turn to take care of him.”

 

He is so confused and forgetful

as his disease is taking a toll.

His biggest concern; his worst complaint

                    “I am so tired”.

 

He has a liver mass that may be cancer.

Surgery is scheduled later this month.

She wants every treatment that is available for him;

“I want him, to hopefully, be able to get stronger”.

 

He is full code, full intervention, no matter what;

even though his body is quietly slowing down.

She is aware and inside knows the truth,

“I am in a great state of denial”.

 

Intellectually we all know the truth,

but denial is a powerful coping method.

It allows us to deal with any stressful event

                    in small baby steps.

 

The truth will forever be in her sight;

but she’ll hold onto denial as long as needed.

It will help her to be where she needs to be;

until the perfect time for her to truly see

                    and acknowledge reality.

 

TO LET GO

We admitted, “Donna”, one hundred years old, on a Tuesday.  Donna was diagnosed four months back with new onset Alzheimer’s Disease.  Family hired part-time caregiving support, as Donna was still safe to be home alone; but did benefit from the extra help.  Her two daughters live nearby and brought her meals along with helping with housekeeping chores etc.  

Donna then took a dramatic fall two weeks ago.  She has dramatically declined since that recent fall.  She is no longer able to walk independently.  She had been using a walker, but now needs assistance with getting up out of a chair.  In addition, she needs help with taking the few steps to her walker.  Someone needs to steady her and hold on in order for her to maneuver only a few feet.  She is now using a wheelchair.  

Donna did not understand our support.  She had fears that we were there to move her out of her home.  She has lived in the same home for over seventy years.  Even with her daughters attempt to explain our support, she did not understand. 

“Elaine,” on the other hand, is another patient we admitted one day after Donna.  Elaine was born within two weeks of Donna.   Both Donna and Elaine will be turning 101 within the next week.  Elaine, like Donna, had been independent with most of her needs until she suffered a stroke two weeks ago.  Elaine is now bedridden.  In addition, she also some confusion.  Elaine is so weak that she cannot even sit up in her hospital bed.  

Elaine’s daughter, “Bonnie”, told us that her mother is so ready for it all to be over.  She has a strong Buddhist faith that gives her peace and comfort. 

It was such a coincidence meeting these to women one day apart.   Both are very strong and tough as most of us will never survive to 100 years of age.  How they cope, was such a huge contrast, though.  We all cope in a way that works for us.  My heart goes out to both of them, because no one would want to live so dependently.  What is so sad is that their options are now so limited.  I wish both of them the best.

TO LET GO 

 

They were born seven days apart

over one hundred years ago.

She’ll turn 101 in five days

and her cohort only a few days more.

 

They both were admitted to hospice

one day apart from each other.

Both because of a rapid, recent decline;

one from a major fall; the other a stroke.

 

Family has hired full time caregiving support

as her recent decline has been swift.

Her confusion and weakness have increased so much;

she can no longer manage any of her needs.

 

She did not understand our support

as feared we would make her move.

Wanting to live her life as always,

“Both of you will have to go.”

 

She, on the other hand, has also declined.

A stroke two weeks ago hit her hard.

She is totally dependent with all of her needs.

She is done, as stated,

                    “Buddha, please take me now”.

 

Both women have lived more years

then most of us will ever see.

One is not yet ready to have it be over,

while the other, on the other hand,

is so ready

                    to let go.

 

POSITIVE

 I met “Grace” today while admitting her to our hospice program.  Grace, seventy years old, was diagnosed four weeks ago with Lung Cancer.  The cancer has already spread to her bones.  The doctors have informed her it may likely have also spread to her brain.  Grace was married twice over forty years ago.  She shared that her first husband beat her and the second husband had affairs.  Smartly, she divorced both of them.  

When I first walked into her home, Grace shared that she stopped drinking three months ago.  She also stopped smoking once she heard about the lung cancer.  Grace has such a strong personality that she was able to stop both habits on her own.  She is so truthful and openly verbalized how her choices may have strongly impacted her life today.  

Grace said what truly helps her cope is, “I pray every day.”  I have a strong suspicion that Grace’s parents were guided from above by naming her the perfect name.  It feels very spiritual.  I wish her well and know she will take her positive personality with her wherever she goes.

POSITIVE

 

She was just diagnosed four weeks ago.

The cancer has already spread.

She chose no further tests or treatment.

She is so aware of the actual facts.

 

She has had a very challenging life.

She’s been a smoker and drinker for many years.

She’s been divorced twice four decades ago.

The majority of her life, she’s been alone.

 

She had two children from her first marriage.

Unfortunately, both have preceded her in death.

One by murder, while the other suicide.

Undeniably, so out of order for her.

 

She sees life though, in such a positive way.

She speaks and lives her truth.

She has accepted her terminal diagnosis;

while strongly wanting to remain at home.

 

Near the end of our visit together,

I asked her if she had any fears or concerns.

Her reply touched and amazed me so

as her positive truth was so beautiful.

 

“If my kids were still alive,

it would be so hard to leave this Earth.

But now I am looking forward

to seeing both of my children again.”

 

911

Ten weeks ago, we admitted “Jan”, eighty-four, to hospice secondary to metastatic pancreatic cancer.  Jan underwent treatment to no avail.  Jan and her family are from Asia.  Jan lives with her daughter, “Ellie”, who struggles with understanding English.  Fortunately, with each hospice visit, Jan’s adult granddaughter, “Ira”, is always available.  She is fluent in English and able to easily translate. 

When we admit patients to hospice, we ask if they are okay not calling 911 but hospice.  Hospice is not a curative program, but beautifully offers comfort care.  Our phone gets picked up and answered twenty-four hours a day.  We encourage patients and families to call us at any time as it helps us help them when we know what is going on 

It is hard for all of us to let go.  Age does not matter as Jan is always a mother, a grandmother, a great-grandmother.  I have never met anyone who loved being dependent.  Jan has been becoming weaker to where now she is bedridden and sleeping most of the day.  Although, when the nurse and I walked in, Jan was lying in her bed moaning from pain.  The nurse immediately gave pain medication.  The family had not been giving it to her as didn’t understand the process.  

Due to Jan being imminent, hospice will visit daily for the needed support.  Jan has a very large, embracing family who all support her and each other.  They all will continue to grieve, but do reach out to each other as needed.  I wish them well. 

ADDENDUM:  Jan died peacefully two days later with her family at the bedside. 

911 

 

We admitted her to hospice just ten weeks ago.

Two months later, they called 911.

She was admitted into the hospital overnight.

We discharged her due to Medicare guidelines.

 

We re-admitted her again four days later.

They agreed not to call 911, but hospice.

But then, one week later, they dialed 911.

Then again, we had to discharge her.

 

Now, two days later, they want to return to hospice.

We cannot admit her if they habitually call 911.

Hospice patients wish for comfort care, not cure.

Families want their loved one’s journey to provide peace.

 

We went out today for the third time.

She is imminent with only days to live.

She has stopped eating and is drinking only sips.

The hospice nurse helped control her pain.

 

The family is aware she only has days to live.

They strongly told us, “We will only call hospice.”

The conversation now is about arranging a quick burial;

which is their cultural and Muslim belief.

 

Intellectually, we all know the truth,

but the emotions of grief are so powerful.

They all knew she was terminal,

but, like most of us, struggled with the actuality.

 

Today, they all deeply know

it is now their time

                    to simply just allow her

                              to let go.

                               

YEARS

Each and every one of us has a story to tell just by living our “normal” life.  So often, we do not realize we are living a new page each day.  We have chapters in life; along with short paragraphs.  Often, it is the little things in life, that are so very profound.  

We admitted “Ted” to hospice today.  There can come a time to each of us when our body just struggles to keep on going.  We become weak whereby it becomes work to just do the simple things in life.  I truly believe if someone hits ninety years of age, they must be tough souls.  Being called “tough” or “strong” is a huge compliment when I hear someone say it. 

Ted definitely fits that description.  In the end, age doesn’t matter when you love someone.  Ted is a husband, a father, a grandfather and a great grandfather.  It will always be much too soon.  Keep living your life your way, dear Ted.

YEARS

 

He’s had many more years

than most of us will ever see.

One hundred and three to be exact.

A very full, healthy and independent life.

 

These past six months, though, have been tough;

once being self-reliant to now fully dependent.

He is so much weaker and needing a lot of help.

Residing now, in a residential home for the extra support.

 

His wife, ninety-eight, is also totally independent.

She lives down the street and visits him daily.

They have been married seventy-three years

with two very supportive daughters living nearby.

 

He became orphaned at a young age;

living in a Boy’s Home from nine to eighteen.

He then enlisted in the Army

bravely serving our country in WWII.

 

They married a few years after the war.

She stayed home to raise their daughters

while he worked over thirty years as a butcher

                    at a nearby grocery store.

 

His life depicts a beautiful and amazing story.

Through tough times; through hard work; through love,

he woke up each morning living it the best way he knew.

Somehow, I wouldn’t be surprised to see him celebrating

                     “One hundred and four!”

 

TO CRY

Frequently crying is a very helpful and powerful emotion.  It allows what is deep inside to come out.  So often, we do not truly know how we feel.  Crying is one physical response that can help clarify our feelings and emotions.   

Typically, myself included, if we cry, the first thing we say is, “I am so sorry”.  Crying is nothing to be sorry about.  It is a healthy reaction that can give us a clearer understanding of where we are emotionally.  

“John” was on hospice for such a short time.  He has a very large and extended family who were so beautifully by his side to support he and his wife, “Alice”.  I find it so beautiful and loving when I see families rally to support each other.  I will tell family members that they likely do not feel that they are doing anything when they are just sitting down nearby their loved one.  But then I deeply share, that by just being there, they are giving the gift of unconditional love; the best gift of all. 

The majority of patients and families I meet in hospice, are so loving and amazing.  It melts my heart.  I felt honored that Alice felt comfortable crying during our conversation.  I truly hope it help her to clarify her grief.  Thank you, Alice.

TO CRY 

 

He was on hospice for only ten days.

His decline was rapid and oh so quick.

His family gathered around and were with him

when he peacefully took his final breath.

 

I called to check in on his wife today;

offering comfort, condolences and support.

Her tears flowed immediately when I asked,

                    “How are you doing today?”

 

“It is not the best day ever.

I am unable to get any sleep.

There is so much I need to do.

This truly is not much fun”.

 

She spoke of her loving children.

“I need to take care of them.

They are grieving so hard like me.

I cannot let them see my cry”.

 

Through her tears, she shared his stories;

their family life; their travels; their love.

“He was suffering so much at the end;

we all knew when it was his time to let go.”

 

“I am normally calm and collected.

I thank you so much for listening to me.

I especially appreciate you allowing me

                    to cry at you.”

 

YES NO

Our agency has a hospice and a palliative care program.  “John”, ninety-three, has suffered from Alzheimer’s Disease for over seven years.  I first met John, and his daughter, “Tammy”, one year ago when we admitted him to our hospice program.   Initially, John had been in a slow decline to where he was becoming weaker, sleeping more and eating less.  In the past few months, that decline slowed down to where John is now stable in his disease process. 

When Tammy was informed that hospice will be discharging her father secondary to hospice’s guidelines, she became very angry.  Her anger grew out of frustration as she knows the tremendous support hospice offers.   John has full time caregivers and is receiving excellent care, but with hospice, families do not call 911, but call hospice.  Hospice phones are picked up and answered twenty-four hours a day. 

After transferring John from our hospice to our palliative care program, the hospice nurse and I went out to do our second admission.  “Elizabeth”, eighty-seven, also suffers from Alzheimer’s Disease.  Prior to the admission visit, “Lynda”, Elizabeth’s daughter, asked that we not say the word “hospice” in front of her mother.  Lynda says it makes her mother shaky and afraid; while then adding, “Mom would then likely say no to coming onto hospice.”   Talking with Elizabeth, I have a strong sense she knows what is going on.  Our goal is to support all of our patients and families the best way we can.  Nothing more.

YES NO

 

I first met he and his daughter

over fourteen months ago.

We admitted him to hospice

secondary to Alzheimer’s Disease.

 

Hospice follows Medicare guidelines.

If we didn’t, we could lose our license.

His decline has been so very, very slow;

whereby no longer meeting those regulations.

 

She was so frustrated; so angry.

“How could you be doing this to my father?

We don’t want to call 911.

It’s an absolute YES, we want to stay on hospice!!”

 

She, too, has Alzheimer’s Disease.

“Please don’t say hospice in front of her.

It makes her anxious; it makes her afraid.

We need your support, but don’t say that word”.

 

She wants to protect her mother too.

She doesn’t want her to be frightened,

although she knows she needs the support.

We then signed her up to our program “quietly”.

 

I asked Mom if she had any fears; any concerns.

“No, I know where I am going”

I believe, she likely would say yes to hospice,

but her loving daughter believes she would hear a “No”.

 

We want to offer every patient and family

the best support that is available.

We will continue to do our blessed work

whether it is a strong “yes”

                    or a very quiet “no”.