I recently acknowledged the passing of the seventh anniversary of when I got the call and became the head of household. I’ve been more contemplative than usual about this journey. A fellow resident family member made a comment to me that has caused me to think deeply about the caregiver’s transition. We all focus our energy and thoughts on delivering our loved ones with Alzheimer’s responsibly to their transition from this physical existence on earth. But what of the dedicated and loving caregiver’s transition to a post caregiving existence? Do any of us give active thought and planning to our own transitions from caregiving to living? How does one prepare?
From both experience and observation, the Alzheimer’s journey is a long and unpredictable one. We are likely unaware of the earliest stages of the disease and projecting any timetable with accuracy seems impossible. Alzheimer’s pulls us in and submerges the caregivers in a daily ebb and flow that seems like an exercise in just breathing. Is it possible to imagine what the future might look like after this journey?
A gentle suggestion he might find happiness again
When my father was alive and I was trying to be his support and optimist, I remember broaching the subject of his future without my mother. I tried to talk to him gently about the possibilities of finding a new happy and fulfilling life. He wouldn’t consider achieving any happiness without her. It was like he shut down and considered her decline would be his decline. As life would have it, she has gone on without him for 5 years and he was spared the emptiness of physically losing her.
Bewilderment about the future is normal
I’ve talked to many caregivers over the years and some have lives they plan to go back to. This is almost a detour in their road. But some wonder with a bit of trepidation what life they will piece together when it’s all over. Situations are all different. I’ve known people who have put careers on hold to spend time with a parent. I’ve talked to many spouses and partners who seem bewildered by the idea of someday moving forward alone. It’s hard to reach acceptance and peace with the inevitable loss, never mind dreaming about joy and happiness.
A little over a year ago, sitting at the beach in Maine, I made a decision and a promise to myself that I would start living again. My days had been clouded with grief for so long that I had to dare myself to set this intention. It felt like I was being less of a daughter and giving in to selfishness. I’ve had to reconcile this desire to live beyond caregiving so I can start to imagine a future. The first step was to start imagining and living a NOW.
Transitioning my thoughts from caregiving to living
It does not mean that I love my mother less because I want to feel joy and happiness every day. Perhaps I reached a level of desperation and loneliness that forced me to make this choice. But I truly want to bring forth a life that is as full, crazy and adventurous as the chapters I’ve already lived. I have opened my mind and heart to the possibilities while mom is still with me. No harm in allowing my thoughts to move from caregiving to living.
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