Moving Through Holiday Stress: When Mom is Forgetting.

I hope that you have been able to enjoy time with your family and friends over the last week. This week we’ve been talking about how to move through holiday stress. All of our lives look drastically different than they did three years ago when we first learned of the pandemic. None of us could have prepared for the changes and shifts that we would have to make in order to survive this new world. I have a tender place in my heart for those of us who were thrust into the roles of caregivers for loved ones. No matter how much love, open mindedness, faith and joy you bring into the situation, the truth is caregivers get tired too. 

We spent part of the holiday jamming to good music and cooking and the other gathered with my mom in the nursing home. Last year, just after a family trip it became more evident that mama was not regaining her gait or muscle control, she was declining rapidly.I had to come to terms with not being able to provide twenty four hour care. There were months after seeking additional care outside of the home where I battled with depression. I couldn’t find the motivation to do any of the things that I enjoyed. I worked full time on my business while also taking care of mama in the house and suddenly she was gone and I could do nothing. I felt purposeless suddenly. I didn’t have the same drive and the guilt of asking for help kept me deep in a shame spiral. 

It really took a combination of tools to move the needle. I must say that working with my therapist through this concept of being willing to extend myself and my spouse grace after 18 months of non-stop care was not only necessary but also an empowering choice. I know there were some weeks that my therapist just shook her head in worry at my level of busyness.  There were days I was at the nursing home so many times, they thought I worked there. I wouldn’t take a single moment back. It took my mind/body/spirit a few months to come back online to the idea that I could live my full life and also be part of mama’s care team. I didn’t know how to not try to hold it all on my own. Not a model that we were given in our youth that wasn’t considered shameful or abandoning the family.

 I grew up witnessing and understanding that it was an expectation that we care for our elders until they pass on. I feel connected to this philosophy deeply and I also see where slight changes could have offered more care and support for everyone involved. Caregivers often take the brunt of the pain on the front and crumble once there is no one to care for. I watched it happen within our family and in many families around us. 

The pandemic really pushed me to challenge those ideals and evaluate if they actually allowed me space to care for myself. When I was willing to be honest, I knew the answer was no. I had to encourage myself to get more help. It started with in-home nursing support. Our aide cooked the entire family meals throughout the day and tended to mom so we could continue to work and secure our financial future. Mom’s condition shifted again and we sought out private pay care and then finally we found support through the state. It took nearly 18 months of questions to finally get to a place that worked for our entire family. 

We have space to breathe (somewhat) finally.

We have 24 hour care

We have regular visits.

Things start to look pretty good. 

For context, I have shared with you all before that Mama is navigating Parkinson's and dementia. Now during our holiday visit she was a  bit touch and go in her interactions but present. She enjoyed the holiday dinner that we brought over, especially since dinner had not been served yet.  Randomly while she’s eating she reminds me not to forget to sit on her bed. 

How many of you all learned that growing up?

I was taught when you’re going to visit the sick and shut-in you’re supposed to come in the room and sit down on the bed with them. Never stand over them or sit in the chair solely. 

I made my way over the bed after her dinner. I sat there looking at her soft eyes, and sweet demeanor. I couldn’t believe we had come this far. She grabs me by the arm and out comes tumbling a quick insult and it caught me off guard.

 I could do nothing but laugh from the shock but it was no laughing matter. Suddenly what was a smooth visit I was stuffing tears and trying not to mumble over my words in confusion. My throat was tense. My chest was hurting.  I couldn’t believe she said that. That of all things that her mind would conjure up, it would be this insult. It took me back to more tense points in our relationship where she has said similar things and I couldn’t shake off the low. 

Over the next couple days after our visit I bounced around emotionally. I was vacillating between “just get over it” to “wtf”. While mama’s comment hit me in a tender spot, I know there’s no way she was not intending to harm me. I endlessly searched google for articles on  “How to deal with a dementia outburst” “What do you do when your mom has dementia and hurts your feelings”. Some comforting and others telling me to get over my shit she’s obviously ill. Both were helpful. The thing that we have to remember is to honor our own pacing and allowing ourselves space to process. You cannot pretend or hide about the emotions that come up for you in navigating the care. And you also understand that you are walking a fine line with someone who is struggling with their own cognizance. It’s a lose lose battle to seek out harmful intent or to beat yourself up for what was said. Find relief where possible, set boundaries where possible, rinse repeat.

 I started dancing at the beginning of the journey together, literally in her hospital room in between scans because I knew there was no way to avoid the heaviness, grief and uncertainty that comes up. While we have beautiful moments filled with joy and laughter,dementia also calls us back to reality in this strange way that says - be here - right now.

As I danced today, I could feel my spirit regenerating with each step and my body strengthening itself. 

Strengthening not just to endure hard times but also for these edgy and uncomfortable moments. 

Strengthening me to step away to take  small breaks. 

Strengthening me to ask for more support. 

Two years ago - we weren’t here and more than anything it makes me even more keen to know how valuable every day is with each other. 

For whatever is too heavy to keep carrying through the day bring it to the dance floor and let Spirit move through and around you.

Today, I encourage you to grab your headphones, put on renaissance with me and just get those feet moving. Clear your mind. Open your heart. and be honest about what you need to refuel for you.