A dear friend of mine for the past several months has been struggling to find a cure for her husband’s various disease processes. Starting with a blood disease that was under control, then advancing cancer and the array of solutions the medical world and pharmacologic domains offer. From New Jersey to New York City, small independent complementary practices all in search of ‘help’ for her husband to live and fulfill his dream to have a few months more of life when he would be able to greet his new granddaughter in December.

The life of a caregiver is the most challenging race that one will ever experience. The caregiver is the last in line to have nutrition, hydration, vitamin support, medical care, and psychosocial care. Why? The focus is on the one who is in need, and how to coordinate everything that needs to be done to get the loved one to and from a facility, doctor’s appointments, to the bathroom, commode, or even fed.

Keeping the person who is ill as the center of focus, the loved one, the whole universe of one’s life suddenly shifts to trying everything to anticipate and fulfill the person’s needs. Often, everything gets done, but the cost is on the caregiver. Questions naturally come up: “Am I doing the right thing?”, “what else is there?” “Why don’t they understand he wants to live and not give up? “We have been praying for a miracle.”

When in a doctor’s office, time is spent explaining, examining and providing treatments. The caregiver (s) are given information, but their stress level and interpretation become limited as their focus is on their loved one, and not the message of care after you leave and get home.

When hospitalized the loved one now becomes a ‘patient’. Stripped of clothing, and most identify, now labeled as a pt in bed xxx, and with a ‘care team’ replacing the family and caregiver, and community who has brought the individual this far. Communication is through a call bell, food delivered on a tray that is foreign to the person’s usual intake, and sometimes other procedures are enacted to dehumanize one’s identity further to add ‘comfort.’ Look at the environment, no color to the walls, no music, no spiritual dimension unless you brought it to the bedside yourself.

Sitting at the bedside of the loved one, one feels separated and awkward. The family members and guests pray, touch, awkwardly kiss and caress their loved one, and feel suddenly isolated and disconnected. A professional comes for medication management, and general information, updates, speaking to the patient, and at times to the family members. You can measure the amount of time they spend at the bedside to average 20 min / 12-hour shift. All are aware of how busy everyone who works in a hospital is during the day. But, what about my loved one? Doesn’t anyone care? And, what about me? Can’t they see the pain I am in?

Trying to advocate for “out of the box” thinking for pain management, skin care, and old-fashioned bed baths with turning and positioning…, is like speaking a foreign language. It doesn’t exist anymore. Why? Is there no evidenced based practice to support these actions?
When questioned repeatedly, or refusing to go with the flow of the medical recommendations, a team of white coat clinicians appear, to discuss at the bedside in their jargon language of evidence-based practice ( a new shield of amour donned ) to reinstate their view. Again, What about what the family and patient what? Even if they are unrealistic, does our medical system now define hope as invaluable? We call pain a 5th vital sign, why not hope a 6th vital sign?

I felt the pain of my friend in the bed and made efforts to ameliorate the distress by using alternative measures and medications used before the hospitalization. The medical care team wouldn’t hear of the plan, no collaboration with family or caregiver who was formerly in charge, and thus, due to their ‘knowledge’ did their ‘best’, failing the patient in pain management and stripping the energy for hope out slowly like a leech.
The caregivers slowly depleted of energy from lack of sleep, a constant wall of ‘you should…’ which was antagonistic to their beliefs and goals towards life, resorted to hopelessness and acceptance of failure, and loss.

Our best health care systems are criminal when they abandon the goals and hope of patients and family members and refuse to be flexible and need to be so ‘in control’. I sometimes wonder, Who puts the food on their plate when they are sick? Or feeds them and takes care of them when they are in bed for months? How easy it is to forget the origin of our connection with life, health, and wellness.

The caregiver is the one who keeps it all together for the family, and the loved one who is ill. It is a beautiful dance of kindness, gentleness, gratefulness, and calm listening, quiet prayer, and supportive encouragement towards ‘taking another sip…’ or ‘sitting up for a minute…”

The caregiver is the one who sleeps with ears open and one eye watching the breath of life rise and fall from the chest; listening to the moans, gets the medication in time, hydrates and prepares food with love and kindness. At one point I said to my friends while at their bedside, both at home and in the hospital, ‘it takes a community to support a person towards wellness, and it takes a strong person to keep everyone in step”. Was I wrong? You have most likely been there, how to did it go for you?

I don’t know anyone who has not been touched by illness or death. Someone was at their side throughout the entire process. After the process is over, the caregiver is changed. How? You can tell it best! Some say, exhausted, not recalling events, despairing, and even anxious without reason. Fatigued, loss of weight, inability to sleep, and even wondering and questioning their spiritual belief. Some, if they are part of a healing profession, may question the value of such a profession as they feel wronged by their experience when in the institution.

I believe that humans are resilient. That is why a person with an ‘expected negative outcome’ keeps hoping and praying. That is why caregivers keep coming back to support and demonstrate love and support no matter what the cost to their health and wellness.  That is why members of the community—friends, relatives, clergy, and others who have not been involved in the family life for a long time—come quickly and share kind acts and words of love and support.

Resilience. The ability to recoil and recharge and expand beyond one’s normal reach with the belief that you have the power comes from our life experiences and foundational learnings as children when growing up. You can take a good definition by a philosopher or dictionary, but, the ability to get up after being kicked in the teeth and keep trying for the golden ring, hope, and faith, is resilience.

To all caregivers, I honor you and applaud you for your resilience. I beg that you take the time to tend to your battle wounds and accept kindness from others, hugs and gifts, and when lonely and sad, reach out to another for a lift. I might also consider refocusing your attention on what is essential in your life. Simplify things, and take time to strip your mind of sadness, and, as I have been instructed many times, create a whiteboard in your mind’s eye with nothing on it, letting all thoughts quiet for a while, and thinking happy thoughts and memories, put those on the whiteboard and simultaneously feed your cells the happiness of living, and the memories of love, experiences, and hope.

Always remember, you are never alone. Someone is always available to help and serve you and return the love you have shared so freely with others. Reach out your hand, ask and don’t be ashamed, we love you and want to support your recovery and wellness in body, mind, and spirit as you venture on towards a new path independently.

In loving memory and dedication to my dear friends, family and community….
Santa Crisa