Everyone experiences their loved one’s dementia differently. So does dementia affect each person differently. I have heard family members describe the person who has become more loving and demonstrative. Or an outgoing person becomes more sullen. My mother’s fear, negativity and demanding attitude simply became more pronounced. In the beginning, I worked hard to bring her comfort and to find things that would elicit some happiness. Most efforts were short lived, but not just because of her short memory. It seemed she had simply lost the ability to enjoy.
However, no matter what traits are amplified or lost, the disease takes it’s toll on both the person with and the caregiver. While a shadow now looms over my mother’s mind and body, I too, feel as though a dark shadow is looming over my life. It is a great and exhausting challenge just fighting the negative gloom.
I am currently suffering from “compassion fatigue”. I first heard the term in a discussion of healthcare professionals. It was first diagnosed in nurses in the 1950s. Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, sleeplessness or nightmares, and a pervasive negative attitude. It is common among individuals that work directly with trauma victims such as nurses, psychologists, and first responders. It is also sometimes referred to as secondary traumatic stress. Some also describe it as secondary traumatic stress.
One source I read said that people who are overly conscientious, perfectionists, and self-giving are more likely to suffer from secondary traumatic stress. Ah, but are those not the attributes of a good caregiver? One who is self giving and conscientious? and of course when it comes to someone we care about, certainly we want the care to be as perfect as possible. Lately, however, it seems that even “good enough care” takes an exhausting toll on my energy and emotions.
In the professional world, to overcome compassion fatigue, it is recommended that the individual change jobs for a while. Hospice nurses often need to take a break, to do some other nursing tasks for a period of time, after working with the dying. Good self care, exercise, proper sleep, good nutrition are also recommended.
I know the “rules”. I know the recommendations. I preach them to others. So, as a caregiver, I do take opportunities to rest, to take a few days off, to continue my hobbies and interests. I am blessed in that we have paid caregivers, wonderful, loving and loyal ladies who spend many hours caring for my mother. But the toll is still being paid. Lately I notice that “fun” is not as much fun. Spending time doing the things I love… don’t have the usual calming effect. They seem more like a chore. And then it is back to the same. Watching a loved one, slowly, oh so slowly, decline. And my emotional fatigue returns with a vengence.
I find myself overwhelmed with guilt when I realize I am thinking, ” It is time to die now. This has gone on long enough.” How could I have those thoughts about a loved one? What kind of person am I if I have those thoughts? And then feelings of despair and failure arrive with the guilt.
I say to myself, it is not about me. It is not even about my loved one, it is about this insidious disease. This cruel, underfunded, too often ignored, blasted, disease. I have worked for nearly 14 years for this cause. I have participated in advocacy, written letters to government leaders, raised funds for research, spoken at public events, and maintained passion and hope. But the fatigue is taking it’s toll.
I have often wondered why this particular disease has not garnered the widespread funding and support that so many others have – with results that include fewer deaths – more survivors. It seems that I now find myself wanting to do what I have seen so many other caregivers do. I want to RUN, I want to FORGET, I want to do something far different and distracting – far from the realm of despair and yet….
I cannot. Tomorrow there are tasks to be done, comforts to be offered, needs to be met. Lately she is not sure of where she is. When will she wonder who I am? Yet, I am her touch stone. I am her security. I am her advocate. I am her daughter.