How you live with dementia depends completely on your own attitude. We cannot change the condition itself, but we can change how we approach this enormous challenge in our lives. We are still in a relationship, even a partnership with the person we love who has dementia. However, we are the only partner in this relationship who can decide how to think, how to behave, what to believe, how to cope. The person living with dementia, obviously, is being propelled on a journey over which they have very little or no control. We still have control (even though it may often feel that we don’t). We can still make attitude adjustments, course corrections, seek help and ask for respite for a few hours or a few days. The person living with dementia has none of these choices available to them.
Caregiving is some of the most difficult and demanding work that we will ever do. It demands great patience and strength of character. It is a role for the courageous and the optimistic. You will probably have many moments of sorrow, even despair, but you will never, ever regret taking on this very difficult work. For the rest of your life, you will know that within you lives a hero. You will carry with you moments of tenderness and joy that can only come from the intimacy of caregiving. You will know that you faced the most daunting challenge of your life and met it head on. Even through your sadness and loneliness, you will gain comfort from the knowledge that you have done and are doing the very best that you could for the person you love. That is all any of us can do, just our very best.
Changing the way we think and speak about dementia can change how we see our role and how we perform that role. Seeing ourselves as heroes rather than victims or martyrs helps us understand the true nature of the work we are doing. When we understand the beauty and the dignity of caregiving, we can begin to see that caring for another person is a gift that has been given to us. Through the exhaustion and the frustration and the tears, we must still remember that the act of caring deeply for another person can bring forth the very best in us.
We should take a few moments each and every day and celebrate our embrace of this gift of caring. If we look carefully, every day (even on the worst days) we can find some event that helps us celebrate caregiving. It may be something as small as a returned squeeze of the hand, or a fleeting smile or a flash of a shared memory. These tiny moments contain the joy and connection that make all of the difficult times worth it.
Without your sacrifice, your noble efforts, your great love, this world would be a much diminished place. Your caregiving work illuminates not only your own life and the life of the person for whom you care; your work lights the way for all who are trying to find their way through the world of dementia.