Help Keep Robin Safe at Home

Help Keep Robin Safe at Home

Hi, my name is T. Michael, and I never imagined I’d be writing something like this. Asking for help doesn’t come easily—I’m a prideful person—but I love my wife, Robin more than my pride. And right now, what matters most is keeping her safe.

With her considerable cognitive issues, I sometimes hold Robin’s face in my hands and gently ask, “Are you still in there, Robin?” And when she looks back at me, I can tell that she’s still there—I feel her spark hit me right in the heart. That’s why I’m doing everything I can to keep her home, safe, and cared for with dignity.

Robin is my wife and partner of nearly 50 years (this October). She’s an extraordinary woman who has spent her life helping others—as a nurse, Director of Nursing, teacher, and later a healthcare legal consultant. She’s delivered babies when no doctor was around, held patients as they passed, and cared for those with Alzheimer’s. Now she needs the love, help, and support she once gave to her many patients.

⸻

Robin’s Health Journey

For more than 15 years, we’ve searched for answers. Robin is the definition of “atypical”—her symptoms defy easy diagnosis. Under the care of specialists at Johns Hopkins, we’ve learned she may have one or all of the following:

    •    Progressive Supranuclear Palsy (PSP) – a rare, degenerative brain disease

    •    Lewy Body Dementia – a progressive neurological disorder

     •     Ataxia- a condition caused by damage to the cerebellum, which affects balance and coordination.

These conditions impact her ability to move, speak, swallow, and think clearly. She also suffers from hallucinations and delusions. Recently, genome testing revealed the Ataxia and it’s unclear whether this is in addition to or instead of the previous diagnoses. So we will now be figuring that out.

Today, Robin’s physical independence is nearly gone. Her communication is limited, and she spends most of the day asleep. Witnessing someone so strong fade like this is incredibly painful.

⸻

Why We’re Asking for Help

Robin can no longer safely use the upstairs shower. I must help her up the stairs—supporting her full weight—which has become dangerous, especially with my own aging body. We’ve moved our bedroom into the former living room to avoid stairs, but the shower remains on the second floor.

We urgently need to install a basic, accessible walk-in shower on the ground floor, along with a few other essential safety features. A trusted contractor has estimated the cost for the shower alone at $13,000.

Since Robin stopped working, we’ve used up our savings managing her care on one income. I still work full-time to keep us going, which means I rely on caregivers during the day. This care is expensive (not covered by insurance) and not always reliable. Most caregivers are not trained nurses, and some aren’t physically able to support Robin safely.

⸻

How You Can Help

If you can help us raise the funds needed for the shower and home safety upgrades, we would be deeply grateful. Every single dollar will go directly toward creating a safer space for Robin—so she can remain at home with the comfort and dignity she deserves.

We know times are hard for many. Even if you can’t give, simply sharing our story means the world.

Thank you for reading. Thank you for caring.

With love and appreciation,

T. Michael