As a family caregiver, you answer questions all day long. Who's her neurologist? What's her blood pressure? When did she eat today? Where is her new walker? Why is she sleeping? Fact based, straightforward and usually easy to answer questions.
The most difficult question is more opinion based, more revealing, more sensitive. For me the question is: How is your Mom? It's also the most personal question because most of my decisions each day revolve around the answer to the question: How is your Mom?
When Mom first became ill in the Fall of 2012, the answer was easy: Mom's a fighter, she's strong and getting better every day! She had a gastro-intestinal issue that required a lengthy surgery right after Hurricane Sandy. In the recovery room she had us laughing because she whispered to us "I guess I won't be able to wear a bikini". My mother doesn't wear a bikini! My mother's sense of humor was alive and well and I knew she would be OK. She bounced back within a few months.
When Mom fell in the Fall of 2014, she broke her arm. She had fallen right before my eyes, like a tree that had been chopped down. We had lots of questions. She was in the hospital for several days and then we had our first experience with rehab. Our choice of rehab was terrible and we brought her home within 5 days. I earned the title of Advocate for my mother and the answer to the question was getting harder. She wasn't as resilient, not fighting as hard to get well. Mom was OK and needed physical therapy to get back on her feet.
This past year was difficult for Mom. She fell and broke her hip in May and then fell and broke ribs in September. Her health is deteriorating. She needs constant care. We are frequent fliers with the Visiting Nurse program and Home Health agencys who all ask, "How is your Mother"?
On good days, the answer is Mom is OK, today was a good day. I usually post silly selfies of Mom and I and try to keep things positive.
On bad days, the answer is Mom is OK. We know that sometimes making it through another day without major incident is all we can do.
No one really wants to hear the ins and outs of caregiving. What foods we experimented with to try to get mom to eat. What music worked today but won't work tomorrow to get her to walk. Or how her hands won't open any more.
The reality is my mother is not going to get better. The Parkinson's Disease is winning, robbing her of the ability to walk, talk and care for herself. My Mother is a fighter, a strong woman but unfortunately she is giving up. I can't say that I blame her. She's been like a Timex watch, she takes a licking and keeps on ticking. Until now.
Caregiving is hard. There are days when I am so angry. I'm angry because my Dad has lost patience with my mom. I'm angry because I lose at least 2 days a week to caring for my mom. I'm angry because it's really hard to focus on life and get things done when all you think about is your mom.
Caregiving is a gift. I have the luxury of being able to spend time with my mom. I get to experience the good days when she decides she wants to talk and asks me questions! It's an honor to help her at this time in her life after all that she has given me.
I understand the question, How's Your Mom? comes from a place of caring and concern for me, my family and for Mom.
I don't want to answer the question with a simple OK, I want to shout that she's AWFUL, that it's NOT FAIR and no one DESERVES this quality of life. But I can't. That wouldn't be fair to the person asking or my mother. I will continue to be her advocate and preserve her dignity. I will share more information with my closest friends and keep up the good fight.
It's difficult when someone you know is caring for a sick friend or relative. Don't be afraid to ask the most difficult question. Be prepared for a canned response. And know that your simply being there and caring is the world's greatest gift to your friend.
If you are a caregiver, what is the most challenging question you are asked? How to you respond when asked about your caree? Please share your comments below. Let's start a conversation and support each other.
Wishing you peace, love and sparks of perseverance, Deb
Debbie is a wife, daughter, sister, aunt and friend to many. She served as a part-time caregiver and full-time advocate for her mother, Barbara, who passed away from Parkinson's, Alzheimer's and Dementia in July 2018. Her mission is to help caregivers not only survive but thrive during their caregiving journey!