I wanted to first off, welcome you to our group. This is a great opportunity to share stories, kindness and comradery in an otherwise interesting and sometimes difficult, time of our lives. I found this note very moving and relatable. Below, find this letter written by one of our families:
Life After a Life-Changing Event
My mother moved to Neuvant House in January 2022. Moving her was a difficult and heart-breaking decision, but we were supported by a host of professionals, organizations and people in our personal spheres who had experience, listened and helped us face that difficult conversation with compassion.
“Mom, we love you. We don’t think you are safe here anymore. It’s time to find a smaller place where there are people who can help you, any time day or night. We love you.”
Mom’s condition was exasperating at times, confusing often, and slowly, but surely, progressive. My sisters and I, friends and relatives noticed changes. Difficulty with technology. Words that were once fluid, as an avid reader, failing her more often. Trouble with directions and appointments. Frozen foods put away in the refrigerator. Seeing the paintbrush and art supplies gathering dust (which was notable for my mom, who painted beautifully).
If you are reading this, you have been there. And now you are here, as we are. To this day, I could not tell you what to call this…dilemma? Dementia. Early Alzheimer’s. Or the vague and head-scratching euphemism the neurologist gave us: age-related memory loss.
Every journey is different, but in our case the precise diagnosis or label wasn’t important, and would not have given us the answers we wanted answered.
Here's what did help:
My sisters and I found a gerontologist, Dr. Rosso, who took mom as a patient in December after she wandered from home earlier that month.
(We spent a frantic morning trying to find her, and to this day, all we know is that she ended up at a bank more than 5 miles from her house asking for directions, and eventually at the police station where my sister picked her up. That’s another story.)
She was the first and only medical professional to talk to mom directly. She held mom’s hands, looked her in the eye and talked to her like the intelligent adult she is. While we were delicately telling mom we were looking into other living options, getting a clear and kind message from her doctor made all the difference. I am forever grateful to Dr. Rosso. Mom agreed to move.
I also called the Alzheimer’s Association helpline, several times, and they gave me concrete tips – like the compassionate lie – and an action plan at the end of each call.
I read books, listened to webinars and I am still feeling my way through how to be there for mom. Because change keeps on changing.
The good news is, there is life beyond the big decision to move a parent or loved one. Today, there are people and activities in the house where mom is living, meals are cooked and laundry is done for her. She has her bird feeders and her cat. She comes to my house for visits and meals. We go shopping.
Foremost in my mind is this reality: The present moment is the only moment that matters to someone with memory loss. As words fall away, we do more walking and less talking. We do more story-telling, narrating to engage or entertain or simply fill the silence, and don’t ask or expect to hear about what she did that morning or the day before.
She comments on the sky and counts clouds. She has fond childhood memories to look back on, weaving her past into the moments we have together. We try to limit choices, because making decisions is hard. We tell her that her hair looks nice, and she smiles when we notice her nail polish (a new thing), or a painting she did or a puzzle she put together.
It is truly the simple things that matter most. Just being there. Showing up. And continuing to care for mom, ready to stand beside her every step of the way.
-Daughter of an NHL Resident