Caring for Multiple Myeloma victims that suffer severe adverse effects isn’t a walk in the park. It requires an understanding of the cancer, at least so far as symptomatic cautions, and in terms of the emotional effects on the patient. Some Myeloma patients are easier to care for than others; in fact, some require little or no care at all. But think about the fact that even with the advances in therapy, 35% of the 30,000 men and women diagnosed with it annually will die within five years.
There are differences in requisite care levels. MGUS patients are fairly self maintained because their lives are not adversely physically changed. Patients manifesting M protein in their blood and urine, with the collateral damage to kidneys and other organs a severe threat might appear to be those requiring the greatest care. Non-secretors, who do not manifest M proteins may logically seem to require less care and vigilance but that’s not necessarily so. Both those who manifest the protein and those who don’t may need equal care, perhaps with a greater focus on the non-secretors.
Non-secretors tend to appear a lot more ‘normal’ because their cancer remains in the bone, rather than throughout the body. While they tend to feel better, the progression of their cancer presents a somewhat greater risk of bone fracture or spinal compression specifically because they feel fewer symptoms than those manifesting the proteins. That’s not to say that the same risks do not apply to protein secretors, they do. But because of the proteins and the tendency for them to feel a greater sense of illness, there are physical warnings that remind them of their situation, and tend to govern their behavior to a greater degree than the non-secretors.
In all cases, fear is an emotional modifier which can and does create at times profound character change. A consistent threat of dying is tremendously wearing –perhaps fraying might be a better expression. Think in terms of the story of the Sword of Damoclese and one aspect of emotional pressure is immediately apparent. But there are other emotional concerns which revolve around self-image and self-worth at work because it’s difficult not to feel demeaned in manifold ways by the different losses of ability inherent to having a disabling condition. Comments or actions which would likely go unnoticed by a person with their health intact can have negative impact to a Multiple Myeloma victim –or any other cancer, really.
It is incumbant on a caregiver to provide more than physical services like meal preparation and cleaning. Patients should be encouraged to act to the fullest of their abilities, while at the same time carefully discouraged from overdoing. Because of this, it’s a fifty-fifty proposition as to whether a spouse or family member might make for a good caregiver, but the same applies to third parties as well. It’s true that literaly anyone can provide care, but it’s not true that literally anyone would be good at it, no less appropriate. In the case of spouses and family members, it can be a bitter pill to swallow to ascertain their inadequacy as a caregiver, but to achieve the best circumstances for the patient, the evaluation has to be made, and made pragmatically.
Assuming the task of cartegiving is to assume the responsibility for the wellbeing of the patient. That might be stating the obvious, but one might be surprised at how many don’t fully fathom the responsibilities they are assuming when taking on patient care. Many will take for granted that they will recognize and properly react to various signals from their charges, when in fact the opposite is true. Desire to provide care can be a blinder as to whether or not one might have the requisite skills to do the job exceptionally, and care has to be exceptional if it’s to have the intended benefit to the patient. More often than not, the expression “good enough” turns out a fallacy, much to the discomfort of the person receiving the care. That’s because it’s difficult to place the needs of another in advance of one’s own needs, and why caregiving should be performed in shifts. No one can maintain the appropriate vigilence on a twenty-four hour basis, yet many people try to pull this off. Caregiving should be viewed as any other job; it needs to be a part of the life one leads, not the whole enchillada.
The patients themselves also need to take a hand in their own care, and the first thing to keep in mind is that there’s no such thing as ESP. A patient has to make their caregiver aware of their needs, their moods, and, of course, the way they feel in terms of health. Just as a doctor is hard pressed to know how to help a patient if they aren’t informed of the symptoms and effects, so is a caregiver. Yet it’s all too common to hear both patients and caregivers assuming the other is somehow magically aware.
Caregiving is one of those tasks with three halves; it’s half science, half art and half work. But it’s a wonderful and appreciated calling that’s vital for many patients.