Caregivers Need Emotional Support

An incident yesterday threw me into an emotional tailspin. I received a simple text message that pushed me into cycles of sorrow, anger, and disbelief. It’s been more than 24 hours and I’m still cycling. So I’ve decided to write about it. Maybe by expressing my thoughts about how caregivers need emotional support and naming how this feels, I’ll be able to move on.

Trying to keep fuel in the emotional tank

The text, which I’ll get to in a moment, hit me hard on the heels of getting a lecture last Thursday. My new, and already former, doctor told me to move on, live my life and break free of the grief I feel over my mother. So my INFP brain has been working overtime on self-evaluation.

I recognize many truths in the words that were thrown at me. Yes, I spend more time talking to dementia patients than healthy functioning humans. Yes, I’ve been here a year and a half and have few friends. Give it a rest. Yes, I need to find the energy to take better care of myself. It took six months of living with a toothache to find a dentist. I am fully aware of all these “shoulds” in life. But there has to be fuel in the emotional tank. It’s not like I don’t make any effort. I go to the gym, meditate and walk a beautiful beach.

Here’s the thing. I love my mother. No bond is stronger than mother-daughter. So even if she doesn’t know my face or my voice, no one treats her with the gentleness and dignity that I do. And no one pays attention to every nuance or expression the way I do. I know how much food to put on the spoon and how to get her to drink her milk. She knew these things about me 50 some years ago. I laugh and say that mom is the president of the clean plate club. She gained 3.5 pounds last month and I can’t wait to get the May results. She is the center of my universe right now.

My family situation is not like most. I’m an only. Dad was an only. And mom has a sister and cousins. Close relatives are non-existent. I often dream of having family to prop me up, laugh with and, yell with occasionally.Mom’s cousin texted a few weeks ago to announce her travel plans with mom’s aunt and their interest in seeing us. I told mom they were coming to visit. She understood in the moment, smiled, and promptly went on to the next thing.

I had weeks to embellish this fantasy that people cared about us, or at least about mom, and they were going to swoop in and garnish hugs on us. I received several more texts leading up to the visit. It seemed they understood that caregivers need emotional support and their visit would be just that. I would facilitate a family reunion. This would be a happy occasion!

Crushed by a simple text message

But mom’s cousin crushed that fantasy yesterday in the body of a text message. How can they not want to see mom? How can they not want to give her a kiss and hold her hand? I was stunned when I read that it would be too hard on them to see my mother in her present condition. How can this be? I kept pacing and muttering aloud, “You grew up together and she is at the end of her life! You’re traveling 1500 miles and you don’t want to see her?” I felt so much hurt that it felt like physical pain.

I am shocked at how hard this hit me. Is this about betrayal of mom, or feeling so lonely and alone in this very difficult journey? It is probably a combination. It’s taken a bit to parse this out but it’s important not to feel alone in this journey. As a caregiver and advocate, I know that my loved one can’t help me to NOT feel alone. Most of the time love flows only in one direction even though she kisses me. Mom kisses everyone and I’m just another person she thinks is nice. 

I’m never pushy with people. But it feels good when someone wants to visit mom. It feels as though that person wants to embrace my struggle and know something about it. It’s an expression of caring toward me as well as my mother and that’s what a caregiver needs during these times. Caregivers need emotional support.