My daughter, son-in-law and grandchildren came with me to London for the opening reception of my photography exhibition at the Cork Street Gallery. We’re continuing to travel together—taking advantage of being in Europe and my grandchildrens’ spring break from school. We’ve been on the go—as you can imagine—but I want to take a few minutes from touring, eating, walking and (on rare occasions) sleeping, to thank everyone who has taken the time to write to me as a result of the wonderful story and slide show on BBC online.
It’s so clear how deeply families and individuals are affected by AD—the stories that have been shared with me via e-mails and comments have meant a great deal to me. I love the connections and the way we enter each others lives.
My daughter kept her Flip on during my brief talk at the Gallery—I’ll send a link once we’re back in the States.
When caregivers ask me for advice, one of the things I suggest is that they ask for help. And to ask for specific help. I can say this with the deep conviction that comes from experience; it took me eight years to ask anyone for help.
These were some of the voices in my head which held me back: I should be able to do everything myself; if someone wants to help, they’ll offer to do so; I don’t want to feel obligated. And then there’s “I can stay by myself, I don’t need a babysitter.” Sorry, that last voice wasn’t in my head but coming from my husband’s mouth. So, between my unwillingness to ask for assistance and Ed’s unwillingness to let anyone but me care for him, I waited 2920 days before asking Ed’s children to stay with him for a week so I could take some time off.
When someone says to you “What can I do”—tell them. “Would you please stay with my wife on Monday afternoon so I can have lunch with friends?” “Would you take my mother to lunch tomorrow so I can get my hair cut?” “Will you stay with your grandfather for the weekend so dad and I can get away?” Time off is energizing—don’t wait eight years to find out.
I just returned from trips to San Francisco and New Orleans, where I spoke to 2000 health care professionals. The people to whom I spoke were engaged and energetic and really interested in talking about what it’s like to live with AD. I was particularly touched by grown grandchildren who had experienced the gradual loss of a grandparent to the disease, and who often watched their parents take on the role of caregiver. I know how special a grandparent-grandchild relationship can be and I think the pain AD brings to a grandchild is often overlooked. I think the grandchildren to whom I spoke were glad to be able to talk about their grandparents and Alzheimer’s. My grandson chose to write about Alzheimer’s for a class project—I know he and my granddaughter understand things about the fragility of life that other children their age might not.
On another note: when speaking before groups, I often don’t see more of a city than an airport, hotel room and venue (Convention Center in New Orleans.) When in San Francisco, though, I did have the opportunity to spend a few lovely hours in the San Francisco Museum of Modern Art—which was, not coincidentally, right near my hotel. I often head first to the photography exhibitions—and this time was no exception. But I was also struck by the design of the museum. I’m attaching some of my photographs from sfmoma; if you’re in San Francisco, try to find time to make a visit. I think you’ll enjoy it.