I recently went to the funeral of the last person in my Alzheimer’s support group to die. When we and our spouses stumbled through the dark early days of trying to figure out where to turn for support and information, we formed a club that no one ever chooses to join: the Alzheimer’s early-onset support group. We’d meet together in one room with a group facilitator and celebrate birthdays and anniversaries, and tell travel stories before breaking into two groups: 1) the memory loss group and 2) the caregiver group.
The memory loss group usually did an activity like an art project, led by someone trained in Memories in the Making™, or had a discussion on a topic such as why they were angry about the car keys being taken away. The caregiver group vented until the inevitable tears would fall, and we’d support each other with tips about how to go out to eat with your loved one, whether to sleep in the same bed and continue to have sex, or how to get through airport security without your loved one freaking out.
The group no longer meets because our care partners are all gone. They’ve all died from the disease that claims the lives of about 84,000 Americans each year. So, the next question is “what happens when you are no longer a caregiver and you can begin to carve out time for yourself again?”
Life after caregiving seems broad and vast. There is so much time to fill. Figuring out how to fill it can be a challenge or a breath of fresh air. It all depends on the disposition of the person, and the number of years spent caregiving. Someone who has been a full-time caregiver for 10 or 15 or 20 years will have a more difficult time than someone who has been a caregiver for one or two years. Or, maybe not. Maybe after being a caregiver for so many years that person has already decided what to do with the rest of his or her life. Or, maybe that caregiver has lost her identity and feels lost and lonely, and that life is meaningless. Or, maybe another caregiving situation suddenly appears.
My friend, whose husband died last week, knows she wants to go back to school. “Since Paul was so involved in education, I feel driven to get another degree,” she told me.
After the caregiving ends, people experience a wide range of emotions including relief, sadness, grief, emptiness, and loneliness. Some people feel like exploding and letting out all the anger and grief that was bottled up during the time they spent caregiving. Some people feel at peace, knowing that they did everything they could for their loved one. Others look forward with excitement and eagerness to turn the page and write a new chapter of their life.
Whatever you feel, it’s okay. You might need professional support or to lean on the shoulder of a best friend. It’s a new day, and the world is yours to shape in any way that you want to.