Keeper: one house, three generations, and a journey into Alzheimer's

by Andrea Gillies
Hennepin County Library hardcover 316 pages
genre: non-fiction

This book is amazing. Partly because it comes at a time in my life when these issues are on my mind and partly because Gillies does a masterful job of combining memoir, research, observation, and social commentary. I don't have much time to blog, so I'll just jot my post-its:

Watch Living With Alzheimer's - the BBC show of Terry Pratchett's illness

page 70 - "Anything that is done without Morris and Nancy in attendance is done at risk, and risk assessment becomes a part of life. We don't go for walks anymore. We don't go out as a family anymore - just the five of us - unless we can go as seven. We go as seven to the cinema, out to dinner, to visit new friends. We're not often invited back."

page 75 - "Dementia is fast becoming the condition that's cited by the young and healthy as the disease that is most feared. . . . We don't have brains; we are our brains. . . . The brain is where the self lives."

page 152 - "I feel sorry for friends in the United States in a similar position, caught up in long tangles of red tape: the details of Medicare benefits, rights to Medicaid, drug bureaucracy, health insurance companies and their cunning opt-outs, and almost everything coming back to money, money, money."

page 160 - "How am I?" Her responses to people and the desire to be honest, brief, left alone . . . I love how she shares this.

page 194 - "Internally, I'm fervently apologetic to all those unknown, anonymous people I ever maligned for dumping." As she struggles with her mother-in-law's increasingly aggressive and difficult behavior, Gillies works to find a placement for her in-laws. Guilt is such a huge part of this issue!

page 217 - "I get it all out of my system in the classic modern way. I write e-mails." Again, I love how she shares her struggles as well as her good days. She includes a lot of information about Alzheimers and caregivers.

page 255 - "This may sound harsh and uncaring. Maybe it is. But it comes after a long, long campaign. Take battle weariness into account. The only way of continuing with this is to disengage emotionally."

page 263 - "I write long e-mails. Some of them are sent, though most are severely edited. I reread before pressing Send and think, What tedious self-pitying drivel; you can't burden your friends like this. Some days I do burden them and their kindness in responding is almost unbearable. It can't be done every day. It's boring for people to hear it and keep hearing it. Not when there isn't any resolution possible other than death of the aged dependents. Nobody could be so crass as to hope for that." One thing this book did for me was make me much more appreciative of my own situation! I've felt some of the things that she talks about, yet what I've had to deal with the last few years is nothing like what she had!

page 269 - "I'm beginning to feel afraid, though it isn't clear what there is to fear. . . . That this is a test of character that I'm failing, D minus."

page 276 - "Dumping. Do we dump people in hospitals when they're ill? Is that the language used? I worry that we're all confusing a physical disease with natural aging, believing that we ought to be able to contain aging and death within the family, recognizing the failure and stigma of doing otherwise. We confuse dementia with old age. . . "

page 297 - Morris and money stuff. "It's a disheartening thing to face, for those who've always been frugal. The people who held on to their ancient washing machine until it gave out, who were content with the old linoleum in the kitchen, who put money by for a rainy day - their rainy day has come."

page 305 - When Morris and Nancy are finally placed in a home. " 'Not severe enough?' Mary had echoed, incredulously. 'She's a lot more severe than plenty of the people you do have in nursing homes. You just try spending a couple of days looking after her. You'd see what she's really like.' " I felt so relieved that Andrea finally had some vindication after being turned down for even getting a spot on the waiting list for her mother-in-law!

So much more I could write! Amazing book.