Is there a right answer?

For eight hours a day, five days a week, I talk to people wrestling with and attempting to cope with the realities presented to them by Alzheimer's disease.

Alzheimer's disease is a shitty, shitty disease. For the person diagnosed, their world becomes increasingly confusing, chaotic, terrifying, and frustrating. Alzheimer's deteriorates a person's ability to perceive, process, maintain and recall information about the world around them and the activities of daily living becomes increasingly difficult to complete. Alzheimer's disease often causes severe depression, paranoia and hallucinations. In the later stages of the disease where short-term memory is all but gone, almost nothing and no one is familiar or feels safe, so a constant state of anxiety and restlessness is the norm.

The reality for someone caring for a person with Alzheimer's disease is equally as horrible. Most often a spouse or an adult child, the caregiver is in a constant state of loss, grieving, guilt, and anger. For most, resentment is also not far behind. Given that Alzheimer's is a progressively, degenerative disease, the caregiver must be continuously adjusting and transitioning. Just when they feel they have learned the person with dementia's (PWD) limitations and needs, the disease progresses, and the needs increase. While the responsibilities of the caregiver are ever increasing, more and more of the person they love is slipping away. They have to learn an entirely new language with which to communicate, for the PWD's ability to follow reason and understand causality deteriorates with their brain. As bathing, dressing, eating, and other activities of daily life become more terrifying and difficult for the PWD, the caregiver's battle to help the PWD complete these tasks also increases in difficulty. Because PWD are prone to paranoia, a caregiver must often provide care for someone they love, that is accusing them of stealing, infidelity and betrayal. Not able to be left alone, caregivers must often give up their habits and activities of self investment (jobs, friends, hobbies, dates)in order to keep their loved one safe. As a result, caregivers are often left feeling isolated, lonely and stressed. In the face of their loved ones with Alzheimer's hating, yelling and often trying to hurt them, caregivers have to shut off the pain and tell themselves that this person they love has a disease that is destroying their brain and that these horrible behaviors are not to be taken personally - the person with this disease does not know what they're doing.
As I said before, Alzheimer's disease is a shitty, shitty disease.

Everyday I talk to caregivers, and everyday it is my job to give them answers and guidance. It is my job to tell them that this person they love and resent at the same time, cannot be held in judgment because they don't know what they are doing and the pain they are inflicting is not of their will. And more often than not, I assure that caregiver that I believe them when they tell me that the person they are caring for was once an amazing, intelligent, funny, caring, talented individual, who had a life, history and identity. It seems that in an effort to remind themselves, so many of the caregivers I talk to tell me who the person with Alzheimer's disease used to be before they began to slip away.

Yesterday I spoke to a man, caring for his wife with Alzheimer's disease. This man told me how his wife had been a concert pianist before she was diagnosed. I could hear in his voice that when he told me these things, he was declaring to the world that even though she no longer seems to be the woman he has loved for past six decades, he remembers who she is. Although he is struggling to see it in his moments of despair, it is clear that he still remembers and sees the person he is caring for, even when it is hard. The moment he told me about his wife being a concert pianist, I felt for the very first time, my heart's attempt to shut that fact out. His stating her past as a concert pianist, forced me to feel the loss this disease has caused. I couldn't help but picture a woman - a woman with passions, desires, creativity, drive, love, a past and most importantly, I pictured the unique individual this man was losing and grieving and missing. Until she was a concert pianist to me, she had been a person with dementia - a person with a disease that has caused her to need her husband to care for her, and the man I was talking to was a man that needed help meeting her needs. As a concert pianist, I wasn't just providing a man with assistance, I was feeling the crushing pain of loss that he was feeling.

When I think about it, it makes sense that my heart would want to kick away facts that impose a persons humanity onto my consciousness. We humans make sense and we have natural instincts of self preservation. If my heart feels the pain that every person I talk to feels, I will become weary, and simply not be able to do my job. A steady flow of pain can be felt for only so long before the spirit is broken under it's weight - which is why caregivers are often calling me in the first place. If on a regular basis, I allowed myself to feel the level pain I felt when he told me that his wife had been a pianist, I would never be able to give the support caregivers that call are looking for. To keep from feeling that pain however, I have to allow my heart to take on a defensive stance and shut out some of the pain I hear in the the caregivers' voices. But I am afraid of this posture of the heart.

We humans are either flexing our hearts to be more sensitive to the pain of others, or we are flexing our hearts' ability to shut that pain out - and of course, when we turn our hearts off to pain, we are also shutting out our ability to take love and joy in. We don't get to have it both ways. We choose. Either we are open to pain and joy, or we are closed to it - there is no option of guarding your heart from pain while allowing joy in.
Long ago I decided that if the cost of joy, intimacy and love was my heart's exposure to pain, then feeling the pain of my own heart and others' would be worth it. Although pain can be so overwhelming, the heart's alternative choice is far worse. A person can choose to guard their heart, be shut down and ultimately too cold to feel the pain of this life. Yes, by allowing your heart to be cold you can miss out on rejection, betrayal, malice and loss, but you miss out on them because you were never exposed to others, joy and the something to loose in the first place. Given my desire to keep myself feeling and exposed, while at the same time recognizing that a certain level of numbness is needed to continue my job where I am hopefully helping people, I am afraid that I will not be able to find the balance between these two conflicting impulses. I also wonder if a balance is even possible? Is it possible to flex muscles in my spirit that fosters both numbness and sensitivity at the same time? I don't know. I do know however, that it scared me to see a colder version of my heart, and to realize just how easy it was to shut out someone else' pain.

When I got home from work, I felt achy and a little lost, so on got in bed with Chris and snuggled - our favorite pastime. While lying against him, the true struggle of my heart became known to me: this life is scary and the pain of this world is oppressive and overwhelming - because of this reality, I am afraid that if I allow my spirit to be exposed to this pain, it will overcome me. My struggle is one of faith. Do I trust that if I continue to expose my heart to pain, God will sustain me and keep my spirit from being crushed? As a follower of Christ, I am called to hear the pain that breaks the heart of God, so that I may be used as a tool of healing and renewal (CRC lingo anyone?). God's promise is that even though hearing the pain of others will cause me pain, it will not break me, for He will renew my spirit. And so I am walking in the faith that my spirit will be upheld - but I don't feel like the Christian soldiers we sang about in Sunday school; fearless and strong. I often feel quite the opposite - I'm scared shitless, and my heart is often tired. But even when I am scared and tired, I know in my core that I will be sustained and that I will not be overcome by the pain of this life. It's just hard for me to remember that when I am overwhelmed from talking to a man utterly broken by the loss of his beloved concert pianist.