As Light and Hope Dim: Dealing with Terminal Illness

Declining health and death have knocked on my door a few times in my life. I have lost our son, my parents, and a close extended family to terminal illness. When other face similar situations, they often ask me about what helped me the most during the longest days of my life. So, here is my input. May it help you, too, see what makes a difference, lifts the burden, and soothes the aching heart.


Talk about Now
When you converse with someone that has a terminal illness or is the caretaker of someone with a terminal illness, inquire about the long term prognosis only occasionally. Then, focus on the current feelings, health, and needs of today, tomorrow, and this week. Most people with a terminal illness are long past feeling sorry for themselves. They would rather share that today they got out of bed themselves before noon and even have had a bath. They want to share that the weather surely seems fine outside and they heard a meadow lark singing. The distant future is bleak, but today holds triumphs and treasures. It is on the nearby they wish to focus.


Do Small Things with Great Love
People gave generously during the times of my deepest stress, but it is the smaller gifts that remain in my mind. I particularly remember the yellow cloth napkins and glass goblets delivered to brighten our family’s Thanksgiving dinner in the hospital when our son was dying of leukemia. I remember the sacrament being brought to my parent’s home the last Sunday before Mom passed away. I remember someone bringing my cousin’s clean and folded wash to her home when she was days away from passing through the veil. It is important to do something, anything, but it doesn’t have to be BIG to be meaningful.

When my father could no longer reach down and trim his toe nails, I began to do it for him. The grandchildren that lived in the home soon because interested in our weekly pedicures and eventually joined in with helping clean Grandpa’s toes, rub lotion on his ankles, and pull socks onto his feet. These “Remember how I helped Grandpa” memories linger in their minds and brought gladness to his face as he received so much personal attention. “It’s my turn this time.” “I rub the bestest, don’t I Grandpa?” “Let me try it. I’m sure I can get his sock over his heel without hurting him.”


Lighten Embarrassing Moments with Humor
Dying isn’t always pretty and you may be present when something quite embarrassing happens around you. Lighten the moment as best as you can and move on. Bodily functions don’t function so well at the end, but still you can help the situation with you light response. Once the line delivering blood to our son burst and got all the adjacent walls and bedding bright red. A visitor said lightly, “Well, looks like it is time to repaint. Where should I start?” Oh, the gentleness of a good friend not being too embarrassed to understand and help.


Welcome the Adjustments that Must Come
There are usually adjustments that come as health declines. A hospital bed will be needed, new handles might appear in the tub, and sanitation might become an issue. Welcome these adjustments and make them a pleasant part of your routine.

When we were in Evan’s hospital room during the bone marrow transplant, we had to wear masks. They were uncomfortable, hot, and made it harder to communicate, but we laughed at how we looked and wore them anyway.

When the hospital bed was necessary for my mother, who passed away from a brain tumor, it was placed in the middle of the kitchen so when she was wakeful, she would also be in the middle of the action.

My sister, who lived in the home with her, continued to paint her finger nails, dress her in bright and colorful nightgowns, and care for her hygiene needs with delicacy. This was a gift both to my mother and to her visitors. She was presented in her best light, an important habit she had sought to have all her life. When she no longer could, others helped her be pretty and smell nice.

Keep Choices
People that are dying slowly lose capacity to do many normal activities. Even then, it is useful to keep choices in their lives. When Evan was in the hospital, for instance, I let him choose between two pairs of “Sunday” socks to wear with his hospital gown. Even at two years old, these choices let him feel somewhat in charge of his situation.


Send Flowers Before
I have learned to send fresh flowers and/or a flowering plant while the person is still alive and can enjoy it. When Uncle Fred was dying of a lung condition, he received an amaryllis bulb already planted and ready to grow. It was the dead of winter and during the last months of his life, it grew and blossomed close by, much to his delight.


Just Go
If you learn about someone’s impending death and you desire a last visit, just go. Don’t worry about what you will say or that you will say the right thing. In the midst of sorrow, no one cares what you say, they just need company and comfort. I remember an understanding friend who came during Evan’s last week. She sat and sang songs to him, one after another and although he was too weary and weak to lift his head from the pillow, when she was done with one and asked if he wanted another, he opened his eyes, smiled, and nodded.

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If you are close to terminal illness, there are several ways in which you can help those who are farther away from the circumstances keep updated on the current situation.


Newsletter, Blog, or Email
My father-in-law’s contribution during Evan’s illiness was to write a monthly newsletter and send it to all his immediate and extended family, and my immediate and extended family and friends. This gift saved me handling a lot of question and answer periods during the especially critical chemo and bone marrow transplant seasons. This gift might more appropriately now include the updating of a blog with content and photos.

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If I could do it again, I would do several things differently.

Take More Photos and Videos
Once a person is gone, they are really gone. While they are here, take frequent formal and informal photos of their daily routines, their rooms, their hospital supplies, and their immediate environment. There are so many changes as things are cleaned up, you leave a hospital, and divide the treasures. Capture the memories with great liberality while there is time.


Embrace Small Requests
As health declines, it is easy to delay small requests by the ill one. For example, just weeks before Dad died, he asked me to take him to the electronics store so he could consider purchasing a new gizmo he has heard about on the news. The challenge of putting his air equipment in the car, getting him into the car, then into the store, and then reversing that routine and returning him home discouraged me from accepting his desire. Of course, I didn’t know at the time how soon he was going to die and comforted myself that I would take him another time, but that time never came. Now I listen carefully and respond more quickly.


With those who have a terminal illness, sensitivity and attention are ever present. It is my opinion that you do what you cant as best as you can. If you goof, embarrass yourself, or even make a mistake, it will not be as bad as having stayed away too long or done too little. Love, care, and treasures the memories you make. These will last past the separation and bring peace to your soul.

©2010 Marie Calder Ricks/www.houseoforder.com