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:

• If you haven't done so already, make sure your loved one has been diagnosed and is under the care of a neurologist or geriatrician. Specialized care makes a difference!
• Have a game plan in place for emergency visits or 911 calls, and make sure that in an emergency your loved one is taken to hospital that is connected to your healthcare team. If you don't, you'll find that your doctor(s) will not be allowed to be directly involved in their care. 
• Have a "comfort kit" put together in a backpack or small duffle. Hospitals are uncomfortable for everyone, but doubly so for people with Alzheimer's.  Bring a favorite blanket or shawl, a comfy knit cap or hat (hospitals can be chilly), and any other small items that might be calming or comforting.
• Prepare a one-page "cheat sheet" of your loved one's personal needs and sensitivities that you can leave prominently placed in the hospital room. Remember that even for short hospital stays there will be many people involved in your loved one's care, and you may not be in the room when a new member of their care team meets them for the first time. 
• Make sure you have all necessary documents - such as medical power of attorney and advanced healthcare directive - executed and in hand. 
• Finally, don't rely on me. Seek advice from other caregivers, do research online, join a support group, and talk to your doctors. 

This post was not intended to malign any individual healthcare professionals or hospitals. Everyone we interacted with was committed to providing the highest level of care, and all seemed to have good hearts. But in general we found that they did not have specialized training in dementia and were thereby ill-equipped to address the unique needs of people with the disease.

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.  

​Jeff
​