This weekend my family gathered together in Los Angeles for the annual Walk4Alz fundraiser, and just before it began my sister pulled a little memento out of her pocket: Mom's Sunrise name tag. Without knowing her history you might guess that Molly had worked at Sunrise, but in fact she lived the last year of her life there as a memory care resident.
The sight of her name tag reminded me of her caregivers, and the great job they did personalizing her care. Even though Mom had a very difficult time with verbal communication, they noticed right away that she loved to help out. She would often help clean up after meals, or assist other residents with activities and crafts. The caregivers spotted a fellow caregiver in Mom so they decided to make her feel like a part of the staff, and had a real Sunrise name tag made for her. She really liked it. Throughout her life Mom was an incredibly productive person and Alzheimer's stole that from her late in life. You could that when she was helping out with her name tag on she felt useful, and connected to her true self.
We created the Care Card to help care providers understand the unique needs and preferences of their clients or residents when they first meet them, and as they evolve. There is a tab for tips on "How to calm me down" for those times when things aren't going so well. On my Mom's I would have put "Give me a task or a chore to do." The Sunrise team got to know her as a person and kicked it up a notch. They made her a part of the team!
Jeff Gray | Founder & CEO
The Memory Kit
Flashback to 2014: My mother who has Alzheimer's has been admitted to the hospital for what would ultimately be diagnosed as a severe urinary tract infection. She was scared, confused, and extremely agitated (an understatement). Enter the nurse, who appeared to have no interest in the information we were trying to share with her, which was that her patient had Alzheimer's disease that had progressed to the point where she was easily agitated, often seemed delusional, and was unable to answer very basic questions. Ignoring us, she began asking my mom complex questions about her symptoms, which she couldn't answer and served to make her even more upset. The nurse's response? Repeat the questions at over twice the decibel level. While smiling. The nurse continued to ignore us as we tried to explain that mom's hearing wasn't impaired - she had Alzheimer's. And so it went, during this hospital stay and others we would have.
Over the next few years we would learn that hospitals are woefully unequipped to address the needs of patients with Alzheimer's and dementia. The reason is that non-specialized doctors, nurses and social workers simply don't understand the disease. Why is that? The answer - from this caregiver-survivor's perspective - is that because Alzheimer's is the only disease that is not covered by insurance or medicaid patients never enter the system with a diagnosis of Alzheimer's. They enter the system for some other reason, and Alzheimer's is a "post-it note" on their chart.
If you have a love one with Alzheimer's in the early stage, there are a few things you can do to be prepared for potential hospital stays. Here is my prep list:
I'm sharing our family's experience in the hope that, with a bit of advanced planning, you can ensure that your loved one is more comfortable in the event that a visit to the ER or a hospital stay is necessary.
Care card Blog
If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.