What Is Hospice Care?

A person with the diagnosis of dementia can live for several years. There will be a decline in cognitive function but for the most part the body remains healthy. In the late stages, the ability to eat and swallow will be affected as they forget how to manipulate the muscles needed for these tasks. There is a risk of pneumonia as food and liquid are aspirated into the lungs. There sometimes is a drastic weight loss, this is referred to as failure to thrive.

Hospice is a concept began in the centuries-old idea of offering a place of shelter and rest, or "hospitality" to weary and sick travelers on a long journey. Dame Cicely Saunders at St. Christopher's Hospice in London first applied the term "hospice" to specialized care for dying patients in 1967. Today, hospice care provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.

Hospice care is appropriate when you can no longer benefit from curative treatment and life expectancy is, at most, no longer than 6 months. Hospice will come in , most medications will be discontinued and medications that will provide comfort will be added. There are nurses, ministers, 24 hour staff on-call for family needs which provides support and comfort. They will not judge and the family remains in total control of their loved ones care. Hospice is a God send. These people are trained to make the transition not just for the person suffering from an incurable disease, they offer support and strength to the families and help them come to terms with the loss. Hospice follows up with the family, in some cases years after their loved one has passed. These people are Angels.

My thoughts.

Everyone should have a living will with specific directions. No one with a diagnosis of dementia should be a full code status (CPR). Let them take their ticket out in peace. No heroic measures such as feeding tubes should even be considered. Always ask yourself, what would they have wanted.

My first year as a nurse in the Skilled Nursing Facility I took care of a lady named Emma. Emma was in the final stages of her Alzheimer's disease and she was also a diabetic. Her family insisted on having a feeding tube placed to prolong her life. You would think with knowing exactly what she was consuming they could control her diabetes. Not so. Emma was poked at least 8 times daily for blood sugar checks and insulin injections. She stayed in bed. Her feet became infected as part of her diabetes. They turned black, the color of black licorice. I would change her dressing every night. The smell from her feet invaded the whole wing. They were literally rotting off. As they worsened and the blackness spread to her ankles there were times when I removed the gauze and toes came with it. Think of quality of life, dignity, no suffering. Hospice provides that.

Would Emma have made the same choices as her family did??

"People usually consider walking on water or in thin air a miracle. But I think the real miracle is not walking on water or thin air, but to walk on earth. Every day we are engaged in a miracle which we don't even recognize: a blue sky, white clouds, green leaves, the black curious eyes of a child--our own two eyes. All is a miracle."

-Thich Nhat Hanh-

I sit here sipping my delightful snickerdoodle coffee, with the french vanilla creamer knowing that in less than 2 hours I will be back at work. A place that used to give me such a sense of belonging, my comfort zone if you will. I took a long weekend to get things back on track, as I have become weary.

I am an advocate for my resident's with dementia. I look out for their well-being, not only medically, but I am responsible for who I let into their lives...by this I mean staff members and people I choose to let into their world.

I am exhausted. Although I am the Director of the facility I answer to people above me, people who really have no concept of the care I strive to provide. I answer to business people...people who are motivated by money. The bottom line. Happiness, quality care, compassion does not really enter into it unless the numbers are in the black and every bed is full.

My staff members, for the most part are needy. They whine, they bitch, their work habits leave a lot to be desired. They call me for direction 24/7. They have been given all the education they need to do their jobs but me doing it for them is a lot easier. No one will make a decision, no one will step up. The burden increases as I get no rest.

I will meet with my supervisor at 3:30 today. I will get reamed for things that happened in my absence. I will be put under the microscope and made to feel incompetent, worthless, and shame. I will go back to my desk and sigh, then, I will gather my thoughts and visit my residents. I will receive smiles and hugs. I will see family members and offer them a kind word, support, a laugh, we'll catch up on life things as I know them all, personally.

The 3:30 meeting will fade into the past and I will become myself again. Caring, fun, supporting, smart, out-going, and above all an exceptional nurse.

I know I am doing my best.

I have worked in the health care profession in several roles for 16+ years. Always in a Long Term Care setting.

In the beginning I was a C.N.A. I did direct care with elderly residents suffering from many types of ailments. I began to learn, life is cruel, life isn't fair, and laughter is the best medicine.

About 2 or 3 years into my caregiving role, the question entered my mind, and I have not resolved it in my head or in my heart, help me understand.

What is worse...aging and your mind fails you, you don't remember your family or friends. You are lonely and afraid, lash out at strangers because everyone is a stranger OR your body fails you??

Diseases like A.L.S. (Lou Gehrig's disease) or M.S. (Multiple Sclerosis) affects the body. ALS is a disease of the nerves cells in the brain and spinal cord that affect muscle control. Short version, it starts with the arms and legs and slowly works it's way up to the musles of the lungs and breathing is no longer possible independently. Swallowing becomes impossible.
You are aware what is happening, in the end stages you can hear but can not communicate. The shell of your body is useless as your mind is totally aware. M.S. has to do with nerves and messages from the brain to other parts of the body. Cognitive problems may occur with MS, but again you are aware. Stroke is one more example. The extent of the damage of the stroke can leave you paralyzed, but the mind may be active, and sometimes the ability to communicate is gone.

Do you want to know your destiny? Do you want to know what lies ahead? Do you find comfort in knowing your family and friends will remain in your life until the end?

OR

Do you want to live a life not knowing who is taking care of you? Do you choose not to be aware of what happened to you yesterday or not being able to look into the future? Is it better not to see the sadness and despair in your loved ones faces?

I know we can't put in our order concerning our destinies, I just want to understand. I wonder if there is a master plan, I wonder if the tests we are given are a result of our lives lived and what we can endure.

Please help me understand.

Oh, how can this be?
You and I are losing me
Some day soon
May be morning
May be noon
I will no longer be the me
You and I know as me,
And the answer seems to be
Words, and thoughts, frequently scramble
And my conversations seem to ramble.

Oh, how can this be?
You and I are losing me.
What do I see when I look into your eyes?
And neighbors come just to pry?
Confusion, hurt, pity, and pain
For I am ill and not insane.

Oh, how can this be?
You and I are losing me?
Oh, help me pray,
"Lord, please come to me and take me
Home with you for all eternity."
What can we do to keep from losing me?
"Nothing," say the experts.

Oh, how can this be?
You and I are losing me?
But in my confused and foggy state,
To You I plea,
"Love me--Remember me--Help me
To be--For as long as I can be
The me we know as me."

Thoughts of an Alzheimer's patient.