To the Editor:

When we are asked to imagine something, we form a mental image or vision of what is being described. Could be a fantasy, a dream, a wish. Or it could be relating to an experience someone else is dealing with, to facilitate understanding. Imagine how they must feel.

Imagine being an essential family caregiver for your loved one – a mother, father, husband, or wife – diagnosed with a devastating disease such as Alzheimer’s or other cognitive challenges and now living in a dementia unit or long-term care setting. You journeyed with your loved one throughout the disease process, being their advocate and contributing to their care despite them living in a nursing home. Through love and regular on-site support, your actions made a visible difference in your loved one’s quality of life. While life with your loved one after such a diagnosis changes forever, the commitment you make as an essential caregiver to your loved one never changes – if anything it has grown stronger.

Then, the unimaginable hits and you are locked out of your loved one’s life.

The on-site support you gave to them is now not allowed. Communication is difficult, due not only to your loved one’s disease, but also to the overwhelming challenges faced by facilities and staff. Months go by before you are allowed a 30-minute appointment to see your loved one at a distance only. You observe the toll your absence has taken on them – and that’s only the part you can see from afar.

Imagine the distress.

Now, imagine you read about a compassionate program some states’ DOH have created to address situations such as yours – an Essential Family Caregiver Program. Based on your involvement in your loved one’s care prior to the pandemic, you would qualify. Imagine you would be allowed back in to care for your loved one, following guidelines including weekly virus testing along with the staff, infection control training, and wearing proper protective gear. Imagine that you would now be able to contribute again to your loved one’s care and quality of life, even if just for a few hours per day.

Imagine if you lived in one of those states that offered such a compassionate program so you could resume your critical role in your loved one’s care as they continue their journey.

For essential family caregivers with loved ones in Rhode Island nursing homes, we can only “imagine” …

Roni Ferraro

Warwick