The first thing my mom said to me when she was diagnosed with Huntington’s Disease was that she never wanted her children to have the burden of caregiving. She couldn’t have stressed it more. Even though the disease had already taken pieces of her, she was still our mom at her core. She still put our needs and hopes above her own. She wanted to protect us from the scary reality of Huntington’s Disease.
Huntington’s Disease, also called HD, is a progressive, hereditary brain disorder. There is no cure or proven treatments. The disease often starts as subtle mood swings and progresses to the complete loss of an individual’s ability to walk, think, reason and talk. The other kicker is, as it’s hereditary, the chance of passing on the disease is 50%. My mom remembered the brutal emotional impact of being a caregiver to her own mother (my grandmother) who suffered from HD. It’s hard enough being a caregiver; it’s even harder knowing that every decline in your loved one could easily be a glimpse into your future.
My mom was just 56 when we began looking for memory care facilities. With family spread out around the country, the burden of caregiver was primarily on me. I was just 27, newly married with newborn twin babies. I was also my mom’s Power-of-Attorney; her person; her voice. We had spent the last year or so flailing. She had gone from an apartment to senior housing to traditional assisted living facility within months. Each of the places she lived promised us that they could handle the ups and downs of Huntington’s Disease. Very quickly we realized that she needed more help than we had anticipated.
Memory care facilities seemed scary. The first time I toured my mom’s community, I cried. Hard. It’s hard to accept the idea that your parent will only continue to decline and that a memory care facility may be the appropriate place for them. At a certain point, the real world isn’t appropriate for someone with dementia. It didn’t feel fair for me to try to fit a square peg in a round hole.
To be completely honest, the option of caring for my mom in my own home was never even a consideration. With newborns at home, I was exhausted and barely had a moment to feed myself or go to the bathroom. I was in no place to add another person to the mix. And to top that off, my mom’s initial request for me to continue to live my life still lingered in the back of my head. I knew that’s what she would want.
We have been so happy with our choice to move my mom into a memory care facility. My mom is busy and happy. They go on weekly outings to places that I would never be able to take her to with two babies in tow. They do yoga, take writing classes and do crafts. She’s exposed to so much more than I would be able to give. Every time I visit her, it gets less scary.
Going into a memory care facility with toddlers is a distraction from the darkness of dementia. For both myself and my mom. To my two year olds, they know no different than visiting their Bubbie at her “big house”. My kids get attention as soon as we walk in. They wave and smile to all the residents and staff. They play with the community dogs and run down the hallways. They don’t see that my mom is different from other grandparents. They love her for who she is in this moment.
And, my mom truly benefits from her relationship with my kids. They bring a light into her world. She isn’t the grandmother I always pictured her to be, but she’s able to play the role nonetheless. I am grateful my kids have her in their lives. I am also grateful that they don’t have to witness me bathe my mom or give her her meds.
With all that said, that doesn’t mean I didn’t feel guilty when I drop her off or when my babies are sick so I can’t visit her. There are bad weeks when my mom wants to leave and doesn’t understand why she lives where she lives. But those pass. Like anything, accepting our new reality takes time.
I’m grateful that we were able to find my mom a home that fits her needs. I’m grateful that my relationship with my mom isn’t strained by the day-to-day responsibilities of caregiving. I’m grateful that my kids get to have a sweet relationship with my mom in doses. I’m grateful that I know my mom is safe and secure. Being a caregiver is not easy no matter what your circumstance, but a memory care facility is what keeps my mom happy and healthy and what keeps our family unit moving forward.