Nearly every day someone asks me how it is going with my parents. I am so appreciative of all of the support and understanding everyone shows our whole family. We are so lucky to be surrounded by good friends, family, co-workers, and neighbors. While the question is an honest question, my answer is never really honest. I usually say something like, “just the same!” “She’s hanging in there!” Or, my fav, “for how bad it is, it’s going fairly well!” What the heck does that even mean?!
People genuinely care and want to help, but I never find a good way to describe how it is really going. Maybe I feel disloyal to my parents by telling the truth, maybe I want to spare myself, or most likely, spare the innocent person asking the question.
Maybe, which usually the case for me in this matter, words seem insufficient, so I don’t even want to try. How do you describe your mom being on hospice and essentially non-responsive for over a year. How, you get a call and think that her time has come. So, we drive up to the house in the middle of the night and gather around and say good-bye. Then, the next day she steadies. You are so relieved, but you know the relief is merely temporary. Then, repeat. How do you describe watching the toll this rollercoaster has taken on your sisters, as they constantly respond to every need my parents have while working full time and raising small children? How do you describe living in limbo for a full year watching your mom unable to walk or talk and be in obvious discomfort and wanting peace for her but knowing it will absolutely destroy your dad when the time comes. All at the same time, my dad’s absolute devotion to my mom has placed his physical and mental health in crisis. Whether he knows it or not, he can’t do this much longer. How do you describe trying to come up with a new solution every single day to ease his strain, yet for reasons out of your control, you are unsuccessful on each attempt? Do we have to hope for my mom to die so my dad can live? How do you describe that to your co-worker who asks how your parents are doing at the coffee pot? You don’t.
So, I guess when I tell you my mom is holding in there, in response to your question, and I smile and change the subject, please let me. Maybe I don’t have the words that day. There is no way I could ever sufficiently tell you about this 10 year journey we have been on. But, know that we appreciate everything you are doing to help us. We can never repay the kindness of our family who show up for every crisis, day or night (or Mary who shows up day and night for us), or my parents’ neighbors who show up with food, advice, and play puzzles. We will always be grateful to you. In the meantime, as my sister said, we will keep going on. We will keep laughing and cheering each other on and raising our awesome kids and trusting that peace is coming for us. When this journey is over, I vow to help others, who like me, don’t always know how to tell their story. We have to draw more attention to Alzheimer’s disease and its impact on families. When my mom was diagnosed, I never could have guessed all that was in store for her or us. We have to tell this story and the story of the caregiver and hope for better for the future of Alzheimer’s disease.
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