Help is on the way

As a caregiver, it’s easy (and way too common) to feel alone on the journey. In many ways, we are.

The idea that no one is coming to our rescue when we are in the throes of a Lewy episode; the feeling that the worst moments are the ones only we can handle is provocative. It is also broadly true.

Nonetheless, Burt and I have a team. I feel very supported. His PCP never fails to answer any question and work out some solution.

Yes, we are alone when he struggles to get out of his recliner before bed. We are alone when his restlessness during the night ends in an awkward sleep position. Lots of issues are there for me to fix or make better.

Nonetheless, there’s plenty of help along our way. Some of the help I get and seek is from my “civilian” friends; they have stepped up in ways I feel beyond the call of friendship. Much is from others in similar situations, many of whom I now count as friends as well.

Our neurologist’s office has a terrific support group and an approachable social worker.

In fact, support groups and social workers prop me up and pull me through all month long.

You can call on the Alzheimer’s Association, which has a 24-hour helpline.

It’s also Alz.org. I turn to for several Zoom groups per month.

I participate with the Lewy Body Dementia Resources groups, where my cohorts are all  experiencing this specific dementia.

Likewise, with the online forum LBD Caring Spouses, which brings compassionate wisdom  daily into my inbox.

There is another part of our network that is invaluable.

We have home aides who help in all aspects of care.

In the beginning, they came as company for Burt. Despite his resistance to the care, he formed some friendships. At this point in our journey, he needs aid from an aide.

I have learned a great deal from these professionals about best practices.

His caregivers even helped me overcome the food battle that was brewing for a long time.

I value their input about the day to day of Burt’s condition.

I definitely need their assistance with his activities of daily living.

I am grateful for the time their presence allows me to regroup and refuel so I can better meet the challenges when Burt and I are alone.