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Patient & Caregiver Support Services and Resources – Part I

The Impact of an Advanced-Stage Illness

Whether you have been diagnosed with ALS, an advanced-stage cancer like Stage III or IV cancer, COPD, advanced heart failure, or some other advanced-stage illness that has a life expectancy of 8 years or less, the impact of your illness affects your quality of life. This much we know.  What we don’t know is when it will happen or how it will affect your ability to continue your normal day-to-day activities. From your career to family responsibilities, the dynamics change if your health declines and it can be like riding a roller coaster with many ups and downs over the course of your illness. This isn’t something most people plan for in life, but there are many support services and resources available for you and your caregivers. Knowing this can relieve some of the anxiety and stress you may be feeling. More importantly, getting as many support services and resources together while you still feel strong and able is helpful for everyone and can provide you with a better quality of life.

Modern medicine has provided improvements in both the early diagnosis of advanced illnesses and in treatment protocols that extend the survival time of those who have been diagnosed. Today, living with an advanced-stage illness for 8 – 10 years after diagnosis is becoming more common. As a result, there is a greater impact on quality of life for the patient and family members, as they generally must confront the reality of their condition and adjust to both the immediate and long-term changes that will take place.

As the patient, you’re already going through a flurry of physical activity related to the physical management of your condition, as well as a roller coaster of emotions and shifting moods. Family members need to deal with their own shock and grief, while also stepping up to assume responsibilities for both your needs and to replace what had previously been done by the person who is sick. All of this takes place amid a changing economic landscape, as the patient’s income or family contributions are likely to fall away at the same time that medical bills start to arrive. The consequences of an advanced stage illness diagnosis go far beyond the impending death of the patient.

How You Might Be Impacted By An Advanced-Stage Illness

The patient is the most obviously and directly affected. Not only must they deal with the physical ramifications of their illness and its corresponding treatment protocols:

  • They also experience psychological, emotional, and mental upheaval on a constant basis.
  • Facing death involves by turns shock, fear, anger, resentment, frustration, sadness and finally acceptance, and while these emotions are flooding in they also have to negotiate the emotional state of their family and friends, as well as the “business” of dying — making financial arrangements, paying bills, and ensuring that advanced directives are in place.
  • Giving up work that is both economically sustaining and mentally stimulating can be difficult emotionally but continuing to work may be mentally or physically impossible.

While the patient is fighting these internal and external battles, the existing dynamic of their social network is also in flux.  Depending upon the patient’s individual preferences or needs they may want family to stay away in order to avoid seeing their pain and grief or may turn to them for emotional and physical support. Treatment protocols such as chemotherapy, which compromises the immune system, may stand in the way of social interactions that are crucial to well-being and quality of life, while in other cases the patient’s home may suddenly be so crowded with people who want to help that the patient is overwhelmed and exhausted.

The Shift of Family Responsibilities

The day-to-day family dynamic shifts rapidly, as even the most mundane responsibilities must be reassigned. Housekeeping, paying bills, cooking, child care, are all examples of tasks that generally need to be reassigned depending upon who is sick and who is providing care to the patient, and in addition to the need for cooperation and accommodation in those areas, there are also medical appointments that need to be attended and caregiving responsibilities added into the mix.

As the needs of the patient become paramount, conflicts can arise. Those who have never been asked to step up or who have busy schedules of their own may feel both burdened by the added responsibility and guilty for their grievances, while those who are used to being in charge are suddenly relegated to the status of invalid and feel frustrated at their helplessness. Tensions can rise and tempers flare just as people feel the most urgency about making the most of their time together.

How To Handle Financial Stress And Loss of Income From An Advanced-Stage Illness

When you add economic concerns to the emotional stress and burdens that an advanced stage illness diagnosis brings, it is no wonder that financial stress from an illness is often cited as the thing that most keeps patients up at night. Where caregiving schedules and blow-ups between family members can be addressed and resolved, and the patient’s medical care and decisions are largely left in the hands of health care professionals, the heavy load of medical and household expenses is a problem for all involved.

The patient feels remorse and concern over their inability to contribute, while the grieving family feels panic as to how the bills will be paid — and guilt for worrying about money at a time when they are facing a devastating loss. These issues weigh heavily on all involved, and can prevent families from focusing on what is truly important in the time that they have left.

Where To Find Resources For Patients With An Advanced-Stage Illness & Their Caregivers

Fortunately, there are a number of resources that are available to provide support to patients and caregivers alike. In the next of our three part series, we will address the difficulty and the need to ask for help.

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