A friend who is in the midst of the caregiver journey told me someone had declared to her that being an Alzheimer’s caregiver is a privilege. My response to that thought was not polite. Yes, adversity can make us stronger if we survive, but most tragedy is a short term happening with the event over and the repercussions left for us to decipher and deal with. Alzheimer’s goes on for ten or twenty years, eating away at the caregiver’s life and destroying the life of the person cared for. 

As time goes by, if you are a caregiver, the person you know and depend on dissolves, and the relationship of mutual love, respect and support is no more. Eventually the patient depends on you for the structuring of each day and for help with more and more personal actions. Emotional behavior is inconsistent and unpredictable. The time goes by and the life you had planned and hoped for becomes unobtainable. You are on a treadmill going nowhere. If you are a retired person, the future appears to hold no promise; in fact, you see no future. 

You want this to end, but then you feel guilty because for it to end means the person you are caring for must die. A care facility is a reasonable solution, but the giving up of that person you have loved and has been a companion to you creates guilt and a deep sense of loss. You will be physically separated. Life apart becomes a reality.  None of this feels like privilege.

Once the patient reaches the stage where he or she is in a care facility, life does get better for the caregiver.  Old pursuits can be returned to, but being without a partner or support person is lonely. That person still lives, and socially and emotionally, that isolates you even when included by friends and family. One part of you is missing.

Those of us who have been caregivers and survived do find ways to move on, do find new endeavors and new meaning for life. We all have causes and activities for which we have a passion and to which we can now dedicate our energies. Friends, grandchildren, unfulfilled dreams we can now pursue begin to reoccupy the space within us.  Volunteering to help others repays tenfold in social interaction and a sense of worth. A future does exist beyond the caregiving, but never would I call that long, hard slog a privilege. That I was there to care for my husband—yes, I am glad. I am not glad that we had to end our life together in such a way. I am enjoying family and my current pursuits, but I would enjoy them even more if he were here to share them with me.