“Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s”

This book caught my eye from its shelf at the local library, mostly because I provided respite care for an elderly man with Alzheimer’s last fall. Alzheimer’s is a disease that can shock you in its brutality, if you’re not prepared for it and maybe even, if you are.

Patti Davis found herself in this position as her father, President Ronald Reagan, faced his Alzheimer’s diagnosis and eventual death. Davis founded support groups for the family and friends of Alzheimer’s patients and this experience, along with her personal wisdom of Alzheimer’s through her father, forms the foundation of this book.

I was at first skeptical of the financial privilege the Reagan family had and that the gift of that privilege makes many options accessible to this family that are not the options for most of us. But the second half of the book changed my opinion. While financial burden or liberation may impact the practical realities of caregiving, many things remain untouched: making decisions about care facilities, understanding resistance to bathing, coping with other people’s opinions and grief.

There are a lot of things I felt this book missed the mark on (encouraging caregivers to take regular self-care breaks is the ultimate luxury, for instance). Or the assertion that hospice will be continued infinitely (I have seen patients with dementia discharged). But it hits the mark perfectly in the areas of grief: the grief of watching your loved one slowly decline at the hands of dementia, the grief of your guilt and exhaustion as a caregiver, the grief of eventually saying the final goodbye. It also felt refreshing to hear someone express some of the hard things that I’ve seen and some of the frustrations that I’ve felt, even if she has much more support, Patti Davis can relate to the struggle. In a space where caregiving is endlessly exhausting, horribly isolating and seems to get progressively harder, feeling seen and heard and understood, with a few tips and tricks to help, felt like a start.