Thank goodness this isn’t a book about the military. I’d sure hate to write that mission description!
For those who are reading this topic for the first time here, my father is in a care facility with mid-stage Alzheimer’s. He lived independently for as long as he could, but just over a year ago he ended up in the hospital with a perforated ulcer. My brother and I found a skilled nursing facility for his rehab, shut down his apartment and sold his furniture, and spent nine months on the legal process of becoming his guardian and his conservator.
The book’s full title is “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss“. It’s the best reference manual on the subject. First published in 1981, the fifth edition came out last year.
I found it in our local public library. About halfway through I bought copies for both myself and my brother. The book is essential for any family dealing with dementias.
It starts with an eight-page description of “a day in the life” of a woman struggling with dementia, and it tells the story from her perspective. The first sentence uses the phrase “slipping memory“: exactly the words Dad used to describe his early stage of the condition. The book goes on to describe Alzheimer’s symptoms and the problems they cause with independent living, home care with families, and even in care facilities.
It goes on to discuss caregiver challenges in coping with the behaviors caused by dementia. Most of the time, the person with dementia is reporting how they feel or can’t find the right words to describe the situation. They have little memory of what’s just happened, but they still have some recall of long-ago events. The resulting jumble of garbled memories and damaged language skills means that they can still talk but no longer remember a problem or how to solve it. If a caregiver is trying to obtain more information, or control the situation, or correct them, then it may lead to more confusion and upset. Our caregiver questions or comments often make the situation worse.
The book tries to help caregivers understand the patient’s perspective and to share just enough information to get through the moment. It suggests breaking sentences down into short statements without explanations. It advises not correcting their statements or questions and not controlling the situation any more than necessary for safety. If the patient is upset or arguing, then someone has to change their behavior: it’s usually only the caregiver who can make the change. The Alzheimer’s patient no longer has the cognitive ability to analyze or solve the problem– they can only react to their emotions and feelings.
The book also covers caregiver issues, including burnout. It suggests how to cope with behavioral problems and every social situation you can imagine. (I learned a lot about challenges I’d never even thought of.) It not only teaches you how to cope with the patient and your own feelings but how to navigate the care system for help from non-profits, agencies, and the government. There’s even a short chapter for teenagers to help work through their worries and fears.
This is the best tutorial on the subject. If someone you love is struggling with a dementia, even if you’re not their caregiver, then start here.
Let me mention two other resources. The first is the Alzheimer’s Association, the largest nonprofit funder of Alzheimer’s research. Their website shares the facts of the disease and helps caregivers find more information and help. They also track medical issues, research, and legislative initiatives.
The other is Bob DeMarco’s Alzheimer’s Reading Room. Bob’s mother has struggled with Alzheimer’s for eight years, and Bob has been there every day. He started the website to keep track of the thousands of articles and books he was reading about the disease, and it’s grown into one of the Web’s biggest Alzheimer’s archives. A year or two into his reading, Bob realized that he had to change the adversarial relationship between him and his mother. The only way to handle the situation was to change his own behavior and, in Bob’s words, “enter Alzheimer’s World”. He stopped correcting his mother’s statements and largely stopped arguing with her. Once he adopted her point of view (that she can’t remember), he realized that debate was pointless. Instead he reassures her or tells her that they’ll take care of it in a little while. When she says she’s hungry, Bob no longer reminds her that she ate a meal 15 minutes ago. He realizes that she’s reacting to the feelings of her body digesting her food, and he says that they’ll eat in a little while. If she asks when that will be, he replies “Soon”, and offers to help her use the bathroom. No arguments and a gentle redirect are usually enough to defuse what used to be a contentious situation. Bob has thousands of posts with specific advice on how to deal with these situations, how to discuss problems with doctors & nurses, and how to navigate the medical bureaucracy.
The “36-Hour Day” describes a specific problem and offers ideas on how to deal with it.
The Alzheimer’s Association will explain what research is being done on the problem.
But best of all, Bob’s website will help you figure out exactly what to say and what to do.
Interestingly, the book helped me make peace with myself. Thinking back on early conversations with Dad when we tried to get him to seek medical help and sign a power of attorney, I realize now that we never had a chance. Dad preferred to live alone and largely in isolation. The Alzheimer’s was already too far along by the time that he started talking about “slipping memory“, and he absolutely refused any medical assistance. (In retrospect, we’re all lucky that he kept up with his blood pressure medication and his checkups.) By the time we were aware of Dad’s situation, it was too late to complete a power of attorney. (As another reader pointed out, the only long-term solutions were a revocable living trust or conservatorship.) Dad handled his own affairs for another 15 months before he ended up in the hospital.
When Dad was in the hospital, I wasted everyone’s time discussing his situation with him. (I watched a geriatric care manager try to do the same, with about the same success.) The simple answer turned out to be the one the doctor ordered: Dad “had” to report to a skilled nursing facility for rehab. Instead of spending hours debating the hazards of independent living with him, I should have just stuck to “The doctor says you need to do rehab to finish healing from the surgery“. Once Dad realized that the care facility took care of meals, laundry, and chores, he became an enthusiastic resident.
Bob’s website is priceless. Next time I visit Dad, I’ll know how to keep him happy and entertained. I’ll be able to navigate the conversational minefield and help him stay comfortable. I’ve appreciated that my brother could be feeling burnout symptoms, but now we can work through that together.
Dad’s doing all right now. Last fall he was diagnosed with multiple myeloma and we decided to try chemotherapy. It went surprisingly well, and he may be finished after just five infusions. My brother and the doctor are discussing the next steps, but we favor “slow medicine”. Dad’s still mobile and can still carry on a social conversation. He seems happy, although he wakes up almost every morning with no idea where he is and still does not know the names of his care staff. (As the Alzheimer’s progresses, he’ll lose awareness of those issues and they won’t worry him any more.) He still enjoys a Sunday restaurant lunch with my brother, and that’s as much as Dad cares to leave the facility.
A conservatorship appointment letter is not a silver bullet, but that’s working as well as one can expect from all the various bureaucracies. I’m able to do what needs to be done, and Dad’s finances are fine. He’s an early retiree who’s been financially independent for over 25 years, and there’s no risk of running out of money.
If one of your loved ones is coping with dementia, then you need to read this book. (You’ll probably want to buy a copy for a handy reference.) Subscribe to Bob’s website or add it to your blog reader feed. A little at a time, in small frequent doses, these resources will help.
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