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 directed - 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.
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.