SIXTH FLOOR

Sixty-eight year old “Carolyn” suffers from lung cancer. Carolyn has been divorced for years, but her two adult children live locally and are very devoted to her. The love the three of them share is so endearing. Carolyn is very social and gregarious. She owned a beautifully decorated colonial home downtown. Her home was three stories and it became difficult for Carolyn to maneuver the stairs.

Carolyn’s two children knew she needed more help and spent time encouraging their mother to move into an independent living retirement community nearby. The independent living section offered meals in the dining room. After many weeks of persuasion, Carolyn reluctantly agreed. She is now struggling with walking, although can slowly ambulate using her walker. She is losing weight and is very weak. Carolyn has days when she cannot get out of bed. Then amazingly the next day, she perks up enough to make it downstairs to the dining room in the facility.

Carolyn is now having more bad days than good days. Her son was visiting yesterday when Carolyn could not get out of bed. She was so weak, she told her son, “I am dying.” That was the first time she mentioned dying to anyone. She is such a strong, determined woman who uses denial to cope. Denial allows one to process reality at their own pace.

The family called me out today to talk about placement in the nursing home section of the retirement community on the sixth floor. They had a lot of questions about finances and how it all would get arranged. Carolyn missed most of the meeting as the hospice home health aide was assisting her in the shower. When she came out, I summarized our conversation, but reinforced that she was the one in control and it would be her decision.

She is at a place where she knows it is something that must be done. Carolyn has been holding on for a long time. She will probably move up to the sixth floor, but not without putting up a fuss. I admire her strength and her determination. She knows the family just wants her to be safe and get the proper care. No doubt she will continue to do things her way and I would be disappointed if she didn’t. Somehow I wouldn’t be surprised if she chose to let go the day before she was to move to the sixth floor.

Addendum: Carolyn died two weeks later; the morning the hospice nurse was coming to tell her that it was time to move to the nursing home section of the facility. The family asked that the hospice nurse inform Carolyn of the need to move, as they felt she would be more receptive than if one of them spoke with her about it. She lived and died her way. Way to go Carolyn!!

SIXTH FLOOR

　
She fights hard to keep on going.
She is determined in her cause.
She hoped this time would never come,
but knew it probably would, one day.

Her inner strength; her determination;
her independence; her forceful soul.
Qualities that make her who she is.
Qualities she holds dear.

She likes living on the third floor.
She is independent, although they prepare her meals.
She resisted moving here from her own home
but has settled in to make it hers.

Now it is time to move again.
To the sixth floor where she’ll get more care.
On her bad days, she knows it’s best,
but then she needs a little more time.

Plans are being made for when it is time.
They are preparing for what likely will be.
She’ll fight it as long as she can,
then will likely end her days
where she never hoped to be.
       On the sixth floor.

TODAY

“Ursula”, seventy-four, was diagnosed with cancer two months ago. By the time the cancer was discovered, it was too late for treatment as it had spread throughout her body. Less than a week after the diagnosis, she came onto hospice.

Ursula was so full of life and had such a dynamic personality. She had a quirky sense of humor that had me laughing right from the start. She was still working and one of the first things she did was file her retirement papers. She had a difficult time with this as she loved her job. She worked for the state and her job involved numbers and details; something she excelled at. She loved to be able to figure out the process in order to successfully complete a project

Ursula lived with her daughter and son-in-law, “Erica” and “Mac”. Erica and Mac were so devoted to Ursula. Erica worked as a nurse, so while she was at work, Mac cared for Ursula. Fortunately, Mac’s job allowed him to work out of the home if needed.

Ursula declined quickly while keeping her upbeat personality. This past week though, the decline was so rapid to where she could no longer get out of bed. Erica took a leave from work to stay with her mother.

I was shocked by how she looked when I went out to do a routine visit yesterday. Ursula was so thin and had lost a lot of weight. She had constant nausea and had stopped eating two days before. She was tired of the struggle of living like this. She was ready to go.

When I asked her if there was anything I could do for her, she replied, “Tell me that today is the day I will die.” She was so used to having control and sorting out what the next step would be. She didn’t like not being able to figure out what to do.

I told her that no can answer that question as no one really knows. I added that it would happen when it is the perfect time for it to happen. I said that letting go may allow the process to flow to where it is suppose to flow. Why she was still here, I didn’t know.

I always like to think that earth is our school. We are teachers at times and students at other times. We all have lessons to teach and to learn. Once we have ended our lessons and taught what we need to teach, then maybe that is our time. There is no logical or clear answer for any of us I suppose.

TODAY
　

She wanted me to tell her
that today was the day she would die.
She wanted me to say her suffering would end
before tomorrow comes.

She stopped eating two days ago.
She was weak and could no longer get up.
She was nauseous with no end in sight.
She had had enough.

She wanted to understand the process
so she would know what she needed to do.
She wanted a guarantee that today was the day.
Something no one could ever promise or know.

I told her it will happen in its own time.
The moment will be perfect for her.
She must trust and release control.
Letting go may allow things to flow.

She must have listened to my words.
She must have thought things through
as before the clock struck twelve
her final wish came true.

Today.

TIME

Seventy-one year old “Annie” suffers from lung cancer. Annie lives with “Sheila”, her partner of thirty-eight years. “ Annie has been on hospice for quite a while. She has had a slow, but steady decline these past months.

Annie is open about her emotions and easily verbalizes how she is feeling. Sheila is more close to the chest with her feelings. Sheila won’t say much when Annie is talking about dying, but her tears will flow easily. She will grab a tissue, dab at her eyes, and stay silent. One can see the pain she is feeling.

This past month, Annie has declined to where she is in bed a lot of her day. She can slowly walk using a walker in the home, although needs someone next to her as she is at risk for falling. Her appetite is way down and each time I visit, I notice that she has lost more weight.

Annie is so weak that, quite often during one of my visits, she will doze off. With Annie sleeping, Sheila is more comfortable sharing her emotions. She will share a sentence or two and then make a joke to ease the anxiety she feels. Our conversation will then turn to other topics for a few moments until, she again, will share how she is emotionally.

Annie and Sheila are protecting each other. Sheila worries about Annie as much as Annie worries about her. During our conversation today, Annie expressed how she is ready to go, but worries that Sheila needs more time. I reinforced to Annie how hospice does follow up for a year afterwards. I told her about our bereavement department and I promised her that I would make sure Sheila will have access to those supports. I added that I was available to make a home visit to give Sheila support if she wished at any time.

Annie and Sheila have a large network of friends, but Sheila may be resistant to call when needed. I encouraged Sheila to reach out to her friends as they will need her as much as she will need them. I have met several of their friends, and know that if Sheila doesn’t reach out, they will come to her. Their support system is that strong. I believe that if one has a good support system, they will be able to handle whatever comes their way.

TIME
　

She’s getting tired of it all.
“Why is it taking so long?”
She’s ready for it all to be over,
but knows her partner needs more time.

She’s been slowly declining for months,
where now she’s in bed a lot of the time.
She’s losing weight as her appetite has waned.
There’s not much joy during the course of her days.

She’s holding on for her partner.
She worries a lot about her.
She knows the pain that will be left behind
and the difficult times that will follow.

They’ve been together for many years.
Their love is intertwined and strong.
It breaks her heart to have to leave,
but she is so ready to go.

She sees the sorrow in her partner’s eyes;
the quiet tears that flow so easily.
She knows she may never be ready to say goodbye,
as there likely will never be
more than enough time.

SOMEHOW

Eighty-nine year old “Stanley” suffers from lung cancer. Until recently, he was up and about and could manage many of his personal needs. Stanley is widowed with four adult children. All of the children reside in the three bedroom home with him. He and his two daughters each have their own bedroom, while “Stanley Jr”, sleeps on the couch in the living room. Stanley’s other son has a makeshift bedroom in the garage.

Stanley’s eldest daughter, “Barb” is the primary caretaker for him and the rest of the family. Barb is a nurses aide by trade and is familiar with the needs of the elderly. Her three siblings rely on Barb to know what to do. Barb has a part time job out of the home caring for an elderly client. While she is working, Stanley Jr. cares for his father. Stanley Jr. has had a stroke and heart attack which limits his abilities, although is attentive to his father.

Barb has to direct her siblings to what needs their father has. Only Stanley Jr helps Barb out when he can. Her other two siblings do not help much at all. Her sister, “Lana” suffers from depression and anxiety which makes it difficult for her to pitch in at times. Their other brother, “Bob” refuses to help at all.

Only Barb and her sister Lana work out of the home. The family depends upon Barb to care for their father, do all of the cooking, yard work and housework. Stanley is declining; is bed bound and dependent now with all of his needs. Even though his care needs have increased, none of Barb‘s siblings have stepped up their limited help.

I have been visiting the family weekly to give Barb support. She’ll complain about her siblings, but then she’ll make a joke and show a big smile. Barb’s only support is her own daughter, who lives nearby. Barb says her daughter texts her throughout the day which is helpful. Even though Barb has little support, she thrives on helping others and doing the right thing.

Somehow this has always worked for this family and will continue to work for the years to come. I know Barb will continue on as usual with a quick joke and easy smile.

SOMEHOW

　
Her family depends upon her.
She’s never let them down.
She continues to be there for all of them,
while putting her own needs aside.

She gets frustrated at times
knowing they all could do a little more.
But she’ll give them a pass, crack a quick joke
and follow up with an easy smile.

She has little support from others,
but somehow keeps moving on.
She gets satisfaction in doing the right thing
even though she’s in this alone.

She’ll never protest or make a fuss
in spite of all their demands.
Somehow it all works for this family.
They know of no other way.

She’ll continue to be the caretaker.
They’ll continue to lean on her.
Somehow it allows them not to even try.
They know she’ll get it all done.
Somehow.

HEVEN

Part of my responsibility as a hospice social worker is to make two phone calls to the family after a patient dies. The first call is when the death occurs, while the second call is about a month later to give additional support. Many can struggle in the weeks following a death, especially after things have supposedly turned back to “normal”.

I called a mother whose son died about four weeks before. She was coping appropriately as had tremendous support from her family and church community. It was during this conversation when she shared the story about her eight year old granddaughter “Amy“.

I counsel children frequently about grief and loss and am always amazed and impressed by the fact that they just want honest answers to their questions. They are not afraid of the truth. Quite often parents want to protect their children from any pain and feel pressured to shelter them. It is always best to answer children’s questions simply and directly. It is a wonderful opportunity to teach them about loss. So much loss in life in not just a death of a loved one, but also when a best friend moves away, parents divorce, etc. Giving children the tools to deal with future losses is so important in a young one’s life.

Amy’s grasp of her grandmother’s explanation of things was profound. I was surprised at how quickly she understood what her grandmother was telling her and then able to replicate it on paper. One could have easily forgotten how young Amy is, but her misspelling of the word Heaven, was a reminder that, yes, she is only eight years old. Children are often our best teachers.

HEVEN
　

She was angry.
She was mad at God.
“God is not good.
He has taken my uncle away.”

Her grandmother tried to explain.
Whenever she does something wrong;
whenever she gets mad at mom and dad,
they will always love her, no matter what.

She sat down with her crayons and paper.
She made two separate drawings.
One she labeled “Uncle Then, Earth”,
the other, “Uncle Now, Heven”.

On “Uncle Then, Earth” she drew a globe.
She sketched a wheelchair.
She sketched a hospital bed.
Next to he bed, she put a lift.

On “Uncle Now, Heven” she drew God on a throne.
She put stairs leading up to the throne.
She drew Uncle walking up the stairs.
She printed God saying, “Well done.”

An eight year old listening with her heart.
An eight year old teaching us all.
All about life and death,
but mostly all about love.