She walked into the room pushing a very imposing looking man in a wheel chair. She parked him by a table and walked over to where I was standing near the refreshment table and immediately began to tell me her story. She said, "My husband was the very successful head of seven corporations in his working life. We were great friends of the Reagans and spent many nights in the White House while he was president." She named the corporations, and added many more details to the life they once shared, then she pointed at him and said, "And now he has Alzheimer's." I talked with her for a while and then had to make my speech.
I was on the airplane heading home before I realized how badly I had missed her. We talked about the corporations he ran, how far his illness had progressed, and the irony of both he and President Reagan having Alzheimer's Disease, but I missed the fact that she was really saying, "Look what has happened to my world! Look at what I have lost!" Once again, no one noticed the burden of the one giving the care.
Caregivers get trapped in a world of tremendous demands of time, talent , energy, and emotions and it is a rarity when anyone notices. We talk about the one who needs the care. We talk of medical procedures and operations. We talk of conditions and the losses they must feel. A warm hug and an acknowledgment of how heavy the caregivers burden must be is rarely given and deeply needed.
The encounter with this lady lead me to write a book called Share My Lonesome Valley: The Slow Grief Of Long Term Care. The caregiver also suffers loss. The caregiver also carries burdens. The caregiver also becomes emotionally drained and physically exhausted, and needs some way to acknowledge and grieve what they have lost.
Most of the time, the caregiver feels rotten even thinking of their own losses and burdens. "How can I complain when my poor loved one is in such pain? My losses are nothing compared to the suffering they are having to endure." So we suffer in silence, bury our feelings, and too often kill ourselves in care. It is amazing how often the caregiver dies before the one receiving the care.
Even if we can muster up enough courage to voice our pain, it is hard to find anyone who will listen and understand. Most of the time, we will get some explanation of how lucky we are to still have our loved one, or that we are healthy enough to give the care... we feel trivialized by the response. No one seems to really understand and that is really all we want, isn't it? Just to have someone really see what we are dealing with and feel some of our pain does not make the pain go away of course, but we no longer feel alone. As long as someone understands, we are not alone.
The blogs in this category will report on what I have learned about the burden of care from listening to people tell their stories. The underlying theme in almost all of them is, no one seems to notice or understand.
What could I have done to help the woman in this story? I was only there for a few hours never to see her again. I certainly could not do anything to stem the tide of Alzheimer's as it ravaged the mind of her husband. All I could have done would have been to hear what she was really saying and say, "I am sorry you are having to go through this. I know it must be painful and lonely in your world." How would that help? She would feel at long last that someone noticed and understood. That in itself relieves a great burden. We all need somebody to understand us. She would no longer feel quite as alone. Now if I could have been a friend who lived there and could offer that kind of understanding and support on a regular basis... then I could be a lifter of burdens and a true friend.