Reflecting on My Experience with Hospice
By Ute Freitag
Ten years ago, as the caregiver of my father, it was a privilege for me to be present when he reached the final stage of his life. One evening while I was out, he was rushed to the hospital. When I arrived, the doctor came and told me he was stable and I could see him. When I walked into the room, the same doctor, looking at the machines my father was hooked to, realized he was dying that very moment. "Your father must have been waiting for you," he said. My father passed away while I was sitting at his bedside, holding his hand and talking to him. The first thought that came to my mind was, "Now he knows the secret of dying."
Maturing is a long, slow process but in time we learn to accept what we cannot change. Why do we make such a "fuss" about dying? Billions have done it before us!
Dying is probably the only real adventure we face after a fulfilled life but, of course, we don't know how we will experience the last chapter of our lives before we get there. The quality of death matters as much as the quality of life, and it's an issue that should be discussed before the crisis of death appears. We should learn to live in the moment and feel the inner peace within us. When we suffer pain during our later years, we should admit the truth: "TMB" (too many birthdays). Hopefully, we will reach the stage where we can enjoy life like the calmness of an evening river, looking at the reflection of the grey and blue water, before the darkness of the night ends the day.
When a loved one becomes terminally ill, we need help. When we realize that their life expectation is probably no longer than six months, what choices do we have? The person can stay at home with the family as long as possible and move to a hospital or a care home when it gets too difficult for the family to handle or, with the support of the family and a palliative care team, he or she can remain at home until the end.
In some cities, there are hospice houses where a person can choose to go for their final days, weeks or months, and which sometimes allow the caregiver to move in with them. The options of where to go should be discussed with the family members closest to the dying individual, but the final decision should be left up to them. What do they really want?
Under the care of hospice nurses, the quality of life for both the dying individual and the caregiver is enhanced. Hospice nurses guide families through the last chapter of a loved one's life. They help the person to be as comfortable and pain free as possible, which sometimes extends their life longer than expected.
Hospice at home
What is hospice care at home? It means dying with dignity. A hospital bed can be provided and the caregiver can be instructed on how to handle pain medication. The caregiver and their loved one can enjoy their time together, including going out for a meal or a walk. They needn't worry about symptoms they don't understand or doing the wrong thing because there's an emergency hospice helpline they can always call when they need it.
In the hospital, doctors abide by the Hippocratic Oath to prolong life as long as possible; but is what a doctor prescribes today still "good" tomorrow? With hospice, the person who is ill is in charge and treatment can be stopped any time he or she feels it is pointless to go on and would rather enjoy their remaining life without treatment. When a person chooses to stop treatment, there should be no fear of hurting the feelings of the caregiver or the family, who should respect the decision. We occasionally read about people who miraculously survive their terminal illness, but very few will be so lucky. We hope this will be the case with our loved one, but it's important to prepare for a normal ending.
Even with hospice care, pain is sometimes unavoidable. But each day can still be special—waking up in the morning with curiosity, hoping for a pain-free day and being grateful in the evening for the beauty of another unique day. Remaining active is the best therapy; being active means getting away from fear and misery.
In my 20 years of volunteering, I have learned how important it is for the patient and caregiver to work together. A patient can choose to be unhappy and depressed or choose to be content and grateful for all the help and love caregivers and hospice nurses provide. How can supporters show empathy and be cheerful and warmhearted if the patient is miserable and rude?
They have to be a team, helping each other through a very difficult time. They still have their past, remembering the Easters, Christmases and birthdays with family and friends, and all the care and help they've given each other. It needn't be that life is meaningless at this stage, unreal, and as though the patient doesn't have a future anymore. They can still hold hands with those they love and revisit their lives together. At the end of the day, the only thing that matters is love.
Perhaps the caregiver is waiting for the loved one to share their feelings, open their heart and talk about their fear and hope while they both feel the illness creeping out of every corner of the room.
As a caregiver, I ask myself: What does my loved one expect from me? And I ask them: What can I do while your bed is your world and you are too weak to handle your daily affairs? Is there anything I can do to comfort you or is it better to be silent? Only recently you were one of us, active and full of energy and humor. You made us laugh and sometimes we were angry with you, but now we both have only one thought: You won't get better, this is the end. But as long as you breathe, you are still alive. When you stop breathing, you will be in a safe place. But I, as the one who still loves you and cares for you, I have to live with your death.
It can be helpful for a caregiver to write down those experiences they shared with their loved one throughout the years that shaped their life together. Then later, when the pain of loss is unbearable, they can be reread until the pain lessens. In our local hospice house, we have beautiful heart-shaped pillows that are comforting to hold and have a pocket with just enough room for a little notebook and a pen. Whenever the dying individual wants to write something important for their family or friends to read, it is there right at their bedside.
Sometimes a person who is dying has difficulty talking about their feelings. The caregiver can encourage them to write down their thoughts about what is and was important in their life, something beyond what one normally finds in the average obituary. It can be a pleasant surprise for the family to learn something about their loved one they never knew. It might be a very personal story and something they want to be read at their Celebration of Life.
Passing the time
It is important to give a person who is dying something to fill the day, something to help them feel needed. It can be very healthy to read a book together, because a good book is like a garden, it needs time to grow and develop, allowing the reader to fully relax and refresh themselves in it.
To work with paint is another wonderful tool to deal with fear and anger. When neither the dying individual nor their caregiver wants to talk about their feelings because it is too painful, they can close their eyes, pick up a brush and paint. Sometimes their subconscious speaks to them through their art. And then, like the studio of an artist, the caregiver can make the room around their loved one's bed a sacred place where imagination can gently run free, a place for their spirit to breathe.
Those people who are painting or being creative in other ways live in the present. My friend Josh, just 55 years-old, lived his final weeks in hospice house surrounded by his three beautiful daughters. Lots of laughter erupted while they were painting together. At the end, there were over 50 paintings in his room. His last painting had two different shades of blue—water and sky—and in the middle he painted a flying bird. He died shortly after. Perhaps he wanted to tell us that he was finally free.
Stopping eating and drinking
In the final stage of life, we want to have our loved ones around us as long as possible, so we make them eat. But is it really good for them? Withholding food and water becomes a highly emotional question that many caregivers have to deal with at the end. If a person is still enjoying food, we are happy to feed them, but what about those dying individuals who want to stop eating and drinking?
When it comes to the end of life, many people don't feel hungry and thirsty anymore. In this case, the person's wishes should always be respected. If they want to shorten their remaining life span, stopping eating and drinking will probably accomplish that. Ideally the dying individual is able to make this decision, but often the caregiver is in charge. Common thinking is that we die in agony and great pain without food and liquid. However, scientists have found higher levels of endorphins (morphine-like chemicals) in the brain of the people who stopped eating and drinking. As a result, there should be less pain and suffering. The question of how much liquid a patient needs depends on the dryness of the mucous membrane of the mouth. The benefits of less liquid are less coughing, less throwing up, less mucous, and less chance of water in the lungs.
There will be suffering and mourning for everyone who chooses to take care of a loved one. And yet every caregiver will experience a kind of happiness nobody can take away. The greatest present caregivers can receive for all the work they do is the opportunity to say "Good bye" to the person they love so much. This closeness will be within them forever.
Ute Freitag is a former family caregiver, longtime hospice volunteer and author of the book "It Is What It Is."