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Living in the Limbo of Chronic Illness

Caregiving Amid Prolonged Uncertainty

Last week was the one-year anniversary of the beginning of my husband’s health crisis. As I gaze at the permanent handicap placard and at him sleeping, once again, on the couch, I’ve been reflecting on what I’ve learned this past year. It has not been an easy year, but I have developed a much better understanding of the nature of chronic illness and how it affects the person as well as his or her family and friends.

I doubt that anyone can go through the experience of chronic illness and remain unchanged. Some people, both the ill and their caregivers, develop greater empathy, a sense of gratitude for the small things, and a larger heart for helping others through the valley of despair. I would like to think my husband and I fall into that category. Others just become angrier, more frustrated, hardened, able to withstand the blows that come at them yet lessened by those blows, dried up like old fruit left in the refrigerator too long.

At the beginning of a health crisis, everyone wants to help, and thank goodness for that help! Family gathers to do what needs to be done, friends and neighbors offer pet care or handyman duties, casseroles and cooked chickens and cakes arrive at the house. Get-well cards overwhelm the mailbox, along with countless texts, emails and Facebook messages.

People expect that the patient will either die or get better and get back to a normal life. But what happens when neither of those expectations is met, when the patient lingers for months or years in the limbo of chronic illness? The drama is over, the ambulance is gone, the blood or other evidence has disappeared, and now the patient and his closest caregivers must get back to business as usual. But it’s not business as usual. It’s a new normal which is constantly changing, and sometimes teeters on the edge of another crisis.

Understandably, this is difficult for most observers to grasp. Friends and family who don’t spend every waking hour with the patient are often shocked to see the physical changes and sometimes deterioration that go along with chronic illness. They keep asking if the person is getting better. When the answer is, “no, he’s not getting better,” people look at you like they’re thinking you just haven’t prayed hard enough or done enough research or seen the right doctors.

For years I watched my father live in this limbo. He had a massive heart attack in 1972, before stents, bypass surgery or post-attack cardiac rehab. Although he had some good years after that, every additional condition or surgery became a new crisis along with new medications and new side effects. In 1987, 12 years before he died, he had bypass surgery that went horribly wrong, and I began learning how one lives with a serious chronic illness. For many people, including my father, depression accompanies the physical limitations, and close family members live under that same cloud. If the caregiver doesn’t work hard to stay upbeat, it’s easy to die that long slow death along with the patient.

Now I’m living with my husband’s serious chronic illness. I’ve learned there’s a difference between having an illness that everyone recognizes and can relate to, at least to some extent, and an illness with no specific name and fuzzy boundaries. People empathize when someone has cancer, for example, especially a cancer whose treatment causes physical changes like hair loss, and for which there are fundraisers and research and publicity. All of those things are important in finding a cure, and I applaud them. But there are millions of people who live with conditions, and perhaps ultimately die from them, for which there isn’t even a name, or the conditions are so numerous that the question, “What’s wrong with him or her?” has no simple answer.

My husband suffers from, in medical terminology, “multiple medical problems,” including some biggies like chronic lymphocytic leukemia and congestive heart failure, but also a host of additional issues, all of which impact each other negatively. Each condition, in itself, would be quite enough to deal with, but together they become overwhelming: the buckets of pills, the research for each disease, the different “ologists,” few of whom ever communicate with each other, the medical bills and claims, each of which must be reviewed in close detail and sometimes disputed, the constant medical appointments, sometimes hundreds of miles from home and requiring a complete lifetime medical history. Being chronically ill with multiple conditions is a full-time job which usually falls to the caregiver because the patient is too tired to handle anything but occasionally getting up off the couch.

The most painful thing to watch is some friends’ reaction to the illness. It’s difficult for others to understand why someone can’t participate in activities they formerly enjoyed, or how much work is involved in getting the patient out of the house to an occasional dinner or social affair. For us, getting ready to go out to dinner requires at least several hours of preparation because I need to help him shower and dress as well as make myself presentable, and then ease him into and out of the car (a process which requires 5 minutes on either end). When we get to the restaurant, usually late, we must negotiate where he sits (cushions needed and preferably a chair with arms). He needs to be helped up after sitting too long and has fallen on one occasion.

Many people find it too painful to watch and gradually drift away, along with the social invitations. I don’t blame them. It is hard to watch and I was probably guilty of the same behavior before this happened to us. In the novel Still Alice, about a woman with early onset Alzheimer’s Disease, Alice speculates that her colleagues avoid her out of fear—the fear that they, themselves could fall victim to the same condition. I think there’s some truth in that observation.

One would think that chronic illness is not a common problem, given the reactions and discomfort of most people around those with visible conditions, yet, according to the Centers for Disease Control, “as of 2012, about half of all adults–117 million people–had one or more chronic health conditions. One of four adults had two or more chronic health conditions. Seven of the top 10 causes of death in 2010 were chronic diseases. Two of these chronic diseases—heart disease and cancer—together accounted for nearly 48% of all deaths.” So a lot of us are living with something, although many of us live with conditions we can hide from others or that don’t interfere with our daily activities. It’s no wonder that we don’t want to look too closely at those who are severely debilitated from multiple conditions. There but for the grace of God go you or I, maybe sooner than we had hoped.

Amid all the political hoopla and posturing, we have a huge group of people who can barely get through the day. They don’t fear terrorism, because they rarely leave the house, and when they do, their greatest fear is being able to safely navigate an unexpectedly high step. Their main concern is whether their own illness will kill them on any given day. People with multiple chronic conditions depend on their caregivers to be their voice in the community and with medical personnel, but the reality is that most caregivers are just too exhausted to fight any battles outside the home.

While researching this post, I also came across the Center for Managing Chronic Disease at the University of Michigan (what did we do before the Internet and its search engines?). They assert that People with multiple chronic illnesses face constant challenges including: poor coordination of medical care, managing complex medication regimens, coping with symptoms and functional limitations, making difficult lifestyle behavior changes, and navigating bureaucracies related to obtaining and paying for health care.”

I am on familiar terms with every one of those challenges. If you’re going to be afraid of something, be afraid of how a loved one’s chronic condition will affect both of you, and be afraid of what’s happening with all of those people who have multiple chronic conditions and no caregiver, or a caregiver who also has multiple conditions. When I asked the head of a home care agency what people did when they came home from the hospital still very ill and with no caregiver and no money, she answered “They wind up back in the hospital.” We are not going to be given much help by either the traditional medical community or the health insurance companies, so let’s get used to that and deal with it.

Where we live now is neither hell nor heaven, but in limbo, that place of uncertainty in between. Dictionary definitions of “limbo” include: “a condition of prolonged uncertainty or neglect; an imaginary place for lost, forgotten or unwanted persons or things; a prison or confinement; a place or state of oblivion for persons or things cast aside, forgotten, or out of date; an uncertain period of awaiting a decision or resolution; an intermediate state or condition.” The limbo of chronic illness is all of those definitions. We await answers. We sometimes feel lost, forgotten or neglected. But we are not resigned to this state and we continue to fight our way out of this prison of intermediacy so we can move on with God’s plan for our lives. We still have hope, faith, gratitude for the small things.

If you or your loved ones are living in the limbo of chronic illness, know that you are not alone nor cast aside. There’s a large community of us and we will not remain silent. We just pray for the energy and resilience needed to persevere, whether we face heaven, hell or continued limbo.

Author’s Note: This was originally written in July 2016, a year before my husband’s death.

Originally published at marywilsonsblog.wordpress.com

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