I am constantly surprised by the care options available, but they take some digging.
While I previously noted the importance of assembling a strong network, that has primarily a friends and family focus. Part of that network includes the care professionals and services that you will need on your journey. Understanding the array of care options out there is both critical and ever-changing. As each of our needs and journeys are different, we tend to dig where we need to. My needs with Maureen resulted in only a surface scratch. As I commit myself more to this exploration, I find even more (and continue to do so). Some options I would encourage:
Airline Meet and Assist
Many I speak to have loved ones that are still high functioning but just get confused without a guide. Maureen and I had always traveled everywhere together, so I was not aware that airlines are obligated by law to provide full assistance for those with cognitive challenges. This includes full assistance to and from the gates as well as on the plane itself. When you book their travel, you can add special assistance and then scroll down to “Request Individual Assistance”. Often, they will allow you as the primary caregiver a gate pass to be with them until they board and another care partner to be at the gate at their final destination. There are also some private in-airport service providers like Swoop (Do you offer meet and assist services? : Swoop (flyswoop.com)) and Airssist (Meet and Greet Services | Airport Concierge & Assistance | airssist).
Attraction-Based Cognitive Assistance
Many theme parks and similar attractions have guidelines for how to maximize the enjoyment for your loved one. Disneyland use to have a small page and now has an entire printable 25-pge guide: DLR_Cognitive_Guide-ilovepdf-compressed.pdf (go.com) This includes a map of break areas, companion restrooms, and rider switch services. Universal Orlando Studios has produced something similar: Guide for Guests with Cognitive Disabilities (universalorlando.com) which includes quiet rooms and passes for autistic visitors and others subject to sensory overload. If it is not obvious on your destination’s website, call and ask. The more we do, the more they will shift those services to the main menu.
Adult Foster Daycare
In lieu of in-home care, you may want to start introducing your loved one to out-of-home services for a few hours a couple of days per week. If you think a care facility is in their future, this can help to bridge that gap more easily later. Services obviously vary town to town, but nationally, there are searchable directories for certified programs. The National Adult Day Services Association has such a directory located here: www.nadsa.org/locator
As your loved one progresses, you may find needs rise up for geriatric care managers, in-home care services, palliative and neuro palliative care, and hospice care. Links to search engines for these services are further explained and included on this site under the Resources tab and specifically “Care Services”.
The Takeaway: Don’t be afraid to ask what accommodations can be made. It frequently surprises me what is out there that we never hear about. We still have a lot to do as a society to remove those stigmas. As I hear and research more options, I will include them on this site under the Care Services Tab. You have support.