Caring for Your Loved One with End Stage Cancer©
By: Clare Absher RN, BSN
I spent the past year caring for my dear beloved husband suffering with end stage cancer until his death. I have been a practicing RN for over thirty years which many say made me exceptionally qualified for the task. I repeatedly heard comments from friends and family that as a nurse I was best prepared to care for my sick husband. I often heard those without caregiving experience wonder how they could possibly care for a dying loved one. Although my nursing background adds some obvious insight to the caregiving process, it is by no means a requirement. I have witnessed many rise up to the challenges of caring for a terminally ill loved one when the circumstances present regardless of any former experience. My initial focus in Part I of this article will be on the "hands on" or physical aspects of caregiving. Part II will explore the role that hospice and home care nurses can play to supplement your caregiving responsibilities. Part III will address the psychosocial and emotional challenges of caring for a terminally ill loved one. It's my sincere hope that by sharing a little knowledge from my personal and professional experiences that you will be better prepared to take on your own caregiving responsibilities.
Pain management and the comfort of your sick loved one is always your top priority as a caregiver and all else is secondary. Establish a good rapport with your physician communicating the need to prescribe all medications and combinations necessary to achieve optimal management of pain. Be sure your physician has a clear concise understanding of this priority with no room for disparity or another physician must be considered. You will need pain meds for milder pain and others for more severe along with sleeping meds and anti-anxiety drugs as needed. Pain meds supplies may also need to include different forms or routes of drug administration including oral, topical patches (through skin), sublingual (under the tongue), suppositories, injections and intravenous routes if applicable. Establish a written schedule to document pain meds keeping in mind the importance of maintaining a continuous blood medication level within your loved one. Make sure to replenish supplies when running low and use medication boxes, egg cartons or whatever means necessary to accurately record all medications and avoid mistakes.
Remember to supplement pain medication with tens units, massages, cold and heat therapy. A warm bed bath followed by soothing back rub can relax your loved one enhancing the effect of pain meds. Explore different hot and cold applications with ice packs, heating pads, hot and cold inducing topical ointments and skin patches to augment pain management. Tens units (transcutaneous electrical nerve stimulation) are alternate useful devices to reduce pain that refer to non-invasive low risk nerve stimulation. Oxygen therapy is another consideration that may be prescribed to add to general comfort, allay anxiety and alleviate shortness of breath.
Some basic physical needs of your loved one are hydration, nutrition, exercise, rest, skin and mouth care, urinary output and elimination. Keeping fluids accessible by placing drinks next to loved one's chair or at the bedside is simple yet very practical. Small meals of fresh fruit, smoothies, hot cereal, and comfort soups are usual favorites. Find what foods specifically appeal to your loved one and offer them frequently realizing they are subject to change. Exercise may simply include passive range of motion to legs and arms while in bed, during bathing and assisting on walks to the bathroom. Rest is critical with emphasis on planned quiet periods of time. Keep well-meaning visitors away to avoid interruptions at naptimes. Brushing teeth and tongue or cleaning with moist swabs is vital to alleviate dryness and prevent potential mouth ulcers causing further discomfort. Should mouth ulcers occur request your physician prescribe special mouth rinses to numb mouth pain and aid healing. Frequent massaging of pressure areas to base of neck, lower back and heels and repositioning often in bed using pads, pillows and wedges is vital to avoid possible complications of pain caused by bedsores. Use alternating air pressure pads, egg crate or memory foams mattress toppers to reduce the high risk of skin breakdown for those with terminal illnesses. Apply heel and elbow padded protectors, or hydrocolloid dressings such as Duoderm to reddened areas on coccyx (tail bone area) and others pressure areas at risk.
Carefully monitor your loved one's bowel movements and intervene as needed to prevent likely distress from occurring. Be proactive with stool softeners, laxatives and enemas to alleviate constipation caused by immobility and pain meds. Remember that even when your loved one's food intake is limited that a certain amount of bowel movement should still occur. Urinary output needs to be measured also to monitor for "UTIs" (urinary tract infections) that require immediate treatment and other changes in kidney function. Fewer intakes of fluids and food will simply mean less urine output. Should urinary retention become an issue then you will need to discuss catheterizations with physician. If urinary incontinence becomes a problem then use of adult diapers, disposable bed pads and meticulous skin care will be necessary. Preferably use washable bed pads because they are more comfortable for your loved one and they double as a practical lifting or turning pad. Order all disposables including gloves, bed pads and diapers when possible in bulk to ensure there are always plenty on hand and also reduce costs.
Home medical equipment and devices are aimed at maximizing your loved one's safety and independence simultaneously as well as hugely benefiting you, the caregiver, with extra help and support. Security poles at the bedside or in bathroom along with grab bars are excellent devices to assist with your loved one's mobility. Bedrails and trapeze bars offer additional bed mobility. Bath seats, raised toilet seats and frames are critical to secure your loved one's safety and independence in the bathroom. Canes, walkers and rollators can all serve purposes at different times depending on your loved one's mobility needs. Geri-chair recliners transport and standard wheelchairs allow for travel comfort and enable further mobility. The CarePathways e-store offers many products that assist in caring for a dying loved one.
We will discuss in Part II how your home care and hospice nurse can assist you with purchasing, leasing or borrowing needed equipment for use at home that will support you as the caregiver, enhance your loved one's dignity and ensure his or her safety.
Heel and Elbow Protectors
Foam Mattress Pads
Alternating Pressure Pad
Raised Toilet Seats