EVOLUTION OF A CAREGIVER

“Ed” was diagnosed with pancreatic cancer seven months ago. At the time of the diagnosis, the doctors gave him four months to live. Ed lives with his wife, “Iris”. They have been married forty-two years. They have two children who are both supportive. Their son flies up routinely from his home 500 miles away. Their daughter lives an hour away and visits weekly.

When I first met Ed and Iris, Ed was still able to manage many of his needs. Iris has a history of anxiety and easily frets over things. She likes to have things certain ways and gets fretful when they are not.

Before Ed’s needs increased, Iris would get anxious as she worried about how she was going to be able to manage him in the future as the disease progressed. She works in the medical field and knows that pancreatic cancer is deadly, which increased her fears about being able to care for him.

As the months have gone on, and with Ed’s decline, Iris’s confidence as a caregiver has grown. In the beginning, she needed continual reassurance that she was doing things right. She is a fantastic caregiver, and with each visit, I reassured her that she was doing a great job.

Ed and Iris have frequent visits from friends and their church community. In the beginning, the visits were so welcomed, but now Iris loves to have a day all to herself. Ed has not eaten for over a month, but still takes chips of ice. She has given him permission to go as, is now aware, that he has suffered way too long. He is now totally dependent upon Iris for every need. She no longer needs reassurance in her role as Ed’s caregiver.


EVOLUTION OF A CAREGIVER


She started out overwhelmed.
She was anxious, doubtful and afraid.
How will she be able to manage him?
How will she know what to do?

She questioned her every move.
She feared she was doing things wrong.
She was on guard, she hovered.
She watched his every move.

She hoped for a miracle, but prepared for the worst.
His decline was slow, but continued downhill.
Her faith gave comfort knowing he would be okay,
but how would she go on without him?

Friends call and often stop by.
She is thankful for the support.
I praised her skills as a caregiver
as she needed reassurance she was doing things right.

She now sees this as blessed times,
although will be relieved when it is over.
He has suffered way too long.
She’s ready for him to let go.

Her confidence has grown with each new task.
She easily attends to his needs.
She no longer questions her every move.
She’s now knows she is,
and has always been,
a caregiver extraordinaire.

SMILE

Fifty-nine year old, “Stu” suffers from liver cancer. Stu suffered a stroke three years ago which left him paralyzed on his left side. He uses a can to ambulate, although it is a struggle and he needs help to do so. Stu’s primary support is his ex-wife, “Carol”. They were married for fifteen years until their divorce several years ago.

Carol lives nearby, although stays with Stu overnight and on weekends. While she is at work, Stu has a caregiver with him as he cannot be left alone. Carol is Stu’s biggest supporter and he so appreciates her friendship.

The first thing one notices is how easily Stu smiles. He has a very positive attitude toward life. He was addicted to drugs and alcohol for years. He became clean and sober fifteen years ago. Since then he has been a counselor for other addicts. With his passion for life and his strong faith, he is a joy to be around.

I visited Stu today and witnessed him struggling to get up off his bed in order to walk the short distance to his recliner in the living room. It took a lot of patience and time for him to maneuver into the other room. Carol was by his side holding on in order that he wouldn’t take a fall. Throughout the ordeal, Stu continued to have a positive attitude using humor to keep the situation light.

Even at the end of his life, no matter what the outcome, I have no doubt he will do it all with a smile.


SMILE


The first thing one notices
is his amazing, contagious smile.
His eyes light up when he sees you.
It’s like you have made his day.

He struggles with his cane.
He’s wobbly and needs help.
The stroke has paralyzed his left side.
The cancer is taking a toll.

Through it all he continues to smile.
You will never hear him complain.
He has a strong faith in God.
His faith guides him through each day.

He reads the bible daily.
It’s what gives him strength.
He has many life regrets,
but forgives himself as he
easily forgives others.

When asked what keeps him going;
what helps him through each day?
He easily replies that with each step he takes,
the Lord will always take two.

He patiently faces each new day
knowing the Lord won’t let him down;
aware that he is never alone
and til the end, I have no doubt
he will do it all
with his amazing, contagious smile.

I'D LIKE TO THINK

During the course of my years in hospice, I have heard many stories about copper pennies. Many feel that finding a copper penny is a message from a loved one who has died letting folks know they are doing okay and just saying “Hi”.

A new patient was opened to hospice just a few days ago. “Myra” was a fifty-one year old African-American woman who suffered from leukemia. Myra lived with her devoted daughter, “Sandra” and Sandra’s seven month old son. Sandra told me that her mother always wanted a grandchild, which I thought was cute.

Myra died suddenly and the family asked me to come out for support. I had not met any of the family yet and walked into a house full of grieving family members. I started counseling them on grief and loss while offering condolences. It was apparent that they were still numb and in shock from Myra’s sudden death.

Myra’s mother stood next to me and didn’t say much, although admitted that losing a daughter is out of order. She said her strong faith in God will help her through. During the course of my visit, I shared that Myra will show them, in a way they will understand, that she is okay. I then told a story about a another family who found solace in finding six copper pennies in front of their home and how they believed it was their loved one.

I truly believe that loved ones continue to communicate with us, although it is only my perception and trust. None of this can be proven, but with my strong belief in the afterlife, it somehow makes a lot of sense to me. Myra’s family, being of a strong Christian faith, did believe in the afterlife. They spoke of relief knowing that she is no longer suffering. I believe they will be okay due to the family support and their strong ties to their church community.

Myra lived in a large apartment building with limited parking for guests. I had to park across a thoroughfare in a shopping center parking lot. Sandra walked me out halfway to my car. When we parted, I walked a few more steps and looked down and spotted two coins partially buried in mud near a flower bush. I was wondering if the coins were a message from Myra. When I cleaned off the mud, I noticed one of the coins was from Zambia, a country in South Africa. It made me wonder if Myra’s family ancestry is from South Africa. Maybe I will just have to ask Sandra, but somehow I wouldn’t be surprised.

ADDENDUM: Today, one week later, I spoke with Sandra. During the course of our conversation, I shared the story of the two coins. She said she was going to call me to thank me for bringing up copper pennies with the family. She shared that family were finding pennies all over the place. Her aunt found a penny in the shower and had some doubts about it being from Myra. She then turned around and found another one. Sandra didn't know if their family history included Zambia, but she will definitely try to find out.


I'D LIKE TO THINK

I’d like to think she heard me share
the copper penny story with her family.
I’d like to think she left the coins
letting me know it was her.

Her family were still numb.
Her death only hours before.
They were holding on to some hope
that she was safely on the other side.

Their faith is strong.
They truly believe.
But a child dying before the mother,
is so out of order somehow.

Mom listened intently to my story.
She didn’t say a word.
But later when I was ready to leave,
she softly whispered, “Copper Pennies”.

On the sidewalk not far away,
I noticed a penny at my feet.
To my surprise; not one but two
held together by caked on dirt.

One coin from Zambia, the other from here.
Both copper and about the same size.
What was its meaning if any at all?
Family ancestors from a forgotten past?

I’d like to think she was letting them know
so they would clearly understand,
that she is still around; she’s doing okay
and made it safety to the other side.

I’d like to think….

DISPLACED ANGER

Seventy-one year old "Walt" suffered from end stage lung disease. He was on constant oxygen and got short of breath with any activity. Needless to say, his life was very sedentary. Walt had been married to "Val" for eleven years. Val was thirty-four years old and a mail-order bride from overseas. Val and Walt were devoted to each other.

Walt had two children from a previous marriage, although they both lived out of state and did not have a close relationship with their father. All of Val's family lived overseas. She kept in touch with them frequently over the internet. Val had several co-workers with whom she felt close.

Walt was opened to hospice about a month ago. Immediately one could see how much he protected his wife from the reality of his disease. He did not want hospice to talk about his dying with his wife. Walt had no fears about dying, although he spoke about the difficulty in leaving his wife. His estate was in place so that Val would not have to worry about losing her home or having unpaid bills.

Two weeks ago, Walt asked me about the end of life process. He wanted to know what he might experience. I was honest with him, but stressed that we are all individuals and each one of us travels our journey our own way. I offered to bring in a booklet that explains the physical changes one might expect during the last months, weeks, days of one's life. He said he would like a copy.

Walt died two days ago. I called Val yesterday to offer condolences. She said she was doing okay and just felt like being alone. She had called both of their families, but was content just to sit in his recliner.

She called me this morning and was angry that I had given Walt the booklet about the end of life. She said she read it last night and that the book took away his hope. She said that hospice should not give out the book to people as she wouldn't want to know the day she is going to die. There wasn't much I could say as her anger was her focus.

In the end, she hung up on me. I thought about the situation thinking what can I learn from this and what should I have done differently. In the end, I realized it wasn't the book or me that was at fault. Her anger was the only safe place for her to go with her grief at this time.

Hospice does have a huge bereavement department and follows up for thirteen months. Hopefully she will avail herself to the support that is offered. It makes me sad though, that she is having such a difficult time. I hope in time she will find her peace.


DISPLACED ANGER

Grief is complicated.
Emotions galore.
Anger is huge,
but who do you blame?

Sorrow is overwhelming.
Victimized by intense sadness.
Denial no longer works.
He won't be back tomorrow.

Anger gives you action.
It gives you something to do.
It delays facing reality.
It postpones what lies ahead.

I understood her anger.
I understood her blame.
She directed her anger at me.
It was the easiest way to turn.

He wanted to know his outcome.
He wanted to know how much time.
She said we took his hope away
when we answered what he needed to know.

In time she'll come to accept things.
Her pain will be a memory of the past.
She'll learn to move on without him.
But for now,
anger remains.

A BLANKET

"Marie", eighty-eight, suffered from bone marrow cancer. From the minute I met her, I saw a very independent woman. She had lived alone for years and liked it that way. Marie was widowed and had three adult children. All of her children lived nearby and were wanting to help, but Marie would tell them that she was doing fine.

In the end, her daughter, "Trish", moved in to care for her. Marie resigned herself to having her daughter around all of the time as I think deep down she knew she needed the help. During this time, Marie was focused on a blanket that she was crocheting for her grandson, Trish's son. She was so pleased at how it was turning out.

In the recent weeks, Marie was becoming weaker and it was apparent that she likely would not finish the blanket. Marie was so determined, that every day she willed herself to sit on the couch and crochet a row or two.

Marie fell four days ago and fractured her shoulder. Returning home from the Emergency Department, she went straight to bed. It was then, that she stopped eating, drinking or talking and started into her dying process.

I went out to do a visit this morning and it was apparent that Marie was close to death. Trish and I went out and sat on the couch. Trish started to talk about her mother while she picked up the blanket and started to crochet. Tears flowed as she shared stories about her mother. Marie died four hours later. Trish plans on finishing the blanket to present it to her son.

This story brought up a beautiful memory of my own blanket. I was one of nineteen grandchildren. My grandmother knitted and was working on knitting an afghan for each of her grandchildren. When I was eighteen, she was working on my afghan when she suddenly passed away. My aunt then picked up the afghan and finished it for me. Today it is still one of my most cherished possessions.


A BLANKET

She was crocheting him a blanket.
She hoped to be able to finish it soon.
She felt time had become her enemy
as she became weaker with each passing day.

She was stubborn and independent.
She had always stood her ground.
Even when she could hardly sit up,
she would crochet him one more row.

She picked yarn she knew he would like.
She stitched each row with love.
Now it sits idle on her living room couch
unfinished and waiting to be done.

Her daughter gently picked up the blanket.
She knew it needed a few more rows.
Tears flowed as she started to crochet.
Each stitch a reminder of what she has lost.

When she is done, she'll present it to him.
A treasured gift linking three generations.
The blanket has become all the more precious
as it was now stitched by two women that love him.
Two women that, he too, has always loved.