Congestive Heart Failure is a complex disease process that places enormous strain and suffering on patient and family caregivers. Essentially, CHF presents multiple symptoms that are related to the heart's inability to pump out blood quickly enough. As blood flow from the heart slows down, blood backs up causing fluid to build up in the tissues. The resulting symptoms are progressive and debilitating. Shortness of breath, coughing and wheezing are common complaints due to fluid leaking into the lungs. Swelling in ankles, legs, feet, and abdomen are also typical. CHF patients will also typically complain of weakness and fatigue because the heart is no longer able to pump enough blood to meet the needs of the body's tissues. As the disease moves into its final stages, confusion, memory loss, disorientation and impaired thinking may set in.
Patients and their family members learn that it can be a real struggle to manage the "ups and downs' of this disease. One day the CHF patient can appear to be doing well and the next, excess fluid build up has him wheezing and exhausted. As the disease progresses, frequent hospitalizations can become the new norm. Becoming educated and prepared to deal with these "ups and downs" is vital for the family caregiver.
What are the signs that the disease has moved into end stage?
Symptoms may include:
* Shortness of breath, even while at rest.
* More frequent and severe edema.
* Weakness and severe fatigue. Patient may lose interest in anything beyond basic needs.
* Chest pain and irregular heart rhythm.
* Profound weight loss despite fluid overload in the body.
* Loss of appetite as fluid accumulates in the abdominal area leading to nausea.
* Distended neck veins.
* Enlarged liver.
* Ejection fraction less than 20% (heart's pumping mechanism is severely impaired.)
Helping a Loved One Manage Difficult Symptoms
For most patients facing end-stage CHF, the goal is to remain home and stay out of the hospital as much as possible. Family caregivers play an important role in helping patients recognize and treat symptoms before they reach crisis stage. Caregivers also play a key role in helping their loved ones stick to positive life style choices and reduce anxiety levels. Planning is critical in tracking symptoms and responding appropriately.
* Keep a daily log. On a daily basis, record weight, medications taken, diet, activities, quality of breathing, and degree of swelling. Relying on memory may prove difficult during periods of stress so daily note keeping will take the pressure off you and your loved one. Your physician will be able to make important decisions about treatment more efficiently with key data readily available.
* Decide in advance when to call the doctor. In general, the following symptoms warrant an immediate call...
- A gain of 3 pounds or more within a few days or a week.
- Increased swelling in hands, ankles, feet or abdomen
- Difficulty breathing or night time coughing.
- Decreased urination.
- Confusion, dizziness, faintness
- Increased fatigue
- Muscle cramps or weakness
- Any distressing symptom
* Discuss appropriate relief measures in advance with physician. In some cases, certain medications may be kept on hand and added as needed to alleviate common symptoms, like edema. Also, "self-care" actions like
elevating legs, wearing special stockings, lightly massaging legs, reducing salt intake or other dietary changes may be recommended as 1st response options.
Dealing with the Fatigue Factor
A CHF patient will frequently complain of fatigue which will increase with disease progression. Helping your loved one better manage this symptom can go a long way in increasing quality of life. Encouraging him to conserve physical energy on routine tasks in order to save fuel for the important things like exercise and special activities.
Plan for the entire day and pace activities. Encourage your loved one to:
- Allow ample time for what needs to get done. Rushing wastes energy.
- Alternate activity with rest. Divide large chores into smaller tasks spread across the day or week.
- Work smarter. Minimize trips up/down stairs. Shop with a list and in as few stores as possible. Cook in quantity and freeze the extra; soak dishes first for less scrubbing later. After a bath, slip on a terrycloth bathrobe instead of drying with a towel.
- Get help when you can. Have medications and groceries delivered.
Throughout the day, consider opportunities to reduce standing, walking, lifting, and bending:
- Sit down whenever possible. When cooking, cleaning, bathing, dressing, or grooming face and hair, have a stool or seat handy.
- Create task stations. Lay out supplies at waist height so everything is within easy reach before you start cooking, cleaning, bathing, or dressing.
- Wheel or wear; don’t go looking for supplies. Use a cart on wheels, a walker with a basket, a pocketed apron, or a fisherman's vest to keep supplies at hand.
- Use extensions. To avoid bending and reaching, use an elevated toilet seat, a grabber for objects, and elongated handles on shoehorns, brushes, and dustpans.
These simple, energy saving tactics may help your loved one conserve the energy needed to enjoy life to its fullest.
*Excerpts from "Living with Congestive Heart Failure", a publication of Delaware Hospice.
This article is dedicated in memory of my father, Donald Cooke who lost his decade long fight with CHF on June 12, 2013.