If you are providing any type of care to someone who has dementia, chances are good that at some point you have experienced feelings of grief and guilt. These are feelings that often leave people feeling uncomfortable and ashamed. All they really mean is that you are human, and you are in the midst of a difficult journey.
When someone you love has dementia, there is an ongoing sense of loss that is invisible to the outside world. Although your family member may still look the same, they are not. They may no longer be conversant, they don’t recall many of your shared experiences; in fact some days they may not even know who you are. The life you may have expected to have with them is gone, and if you have help coming into your home, your sense of privacy has also faded. These are all significant losses, which create an unclear and ambiguous sense of grief. This is real grief and must be acknowledged and cared for. If the people around you don’t see this, explain it to them. Share your grief and tell them what would be helpful. Treat yourself delicately. Honor these losses, and find a healthy outlet to release your feelings: exercise, be creative, meditate, connect with others, or just take a break to be with your feelings. A good cry can provide some relief.
It’s been my experience that people who become caregivers tend to be truly selfless people who are devoted to providing the best care possible. Even so, they also tend to be very hard on themselves. Despite endless reserves of patience, if they experience a moment of annoyance with the daily repetitive questions from their person, it seems unforgivable.
Ambivalence walks hand in hand with caregiving. It is quite common to feel love and devotion while also feeling angry and resentful. Dementia in particular pushes caregivers to the edge of what they can tolerate – physically, emotionally and spiritually. This morass of emotion tends to leave people feeling guilty. To some degree, guilt is a matter of choice. It is much like a big bag of rocks that we carry around on our backs. It is tiring and discouraging. We have a choice to put the bag down. It isn’t easy, but it is worth the effort to let it go. If you are caring for someone with dementia, the greatest gift you can give yourself is to be extraordinarily compassionate with yourself. Be gentle, be non-judgmental. Allow yourself to feel whatever you feel, and then take care of yourself around it. Ask for support in whatever way you need it and share your feelings with a friend, a journal, a support group or a therapist. Struggling with your emotions while caregiving is not a sign of weakness; it is a sign that you are human. Be good to yourself.