4.58

5

Feb 09, 2010

I spent 18 years of my professional life as a social worker specializing in the problems of the aging. Thirteen of those years were in nursing homes and rehab facilities. I could always identify the families of residents with Alzheimer's: they had big black circles under their eyes from lack of sleep. The 36 Hour Day was and is still the best thing written for the loved ones and caregivers of dementia patients. This book will help you deal with the terrible burdens of anger, love, guilt and I spent 18 years of my professional life as a social worker specializing in the problems of the aging. Thirteen of those years were in nursing homes and rehab facilities. I could always identify the families of residents with Alzheimer's: they had big black circles under their eyes from lack of sleep. The 36 Hour Day was and is still the best thing written for the loved ones and caregivers of dementia patients. This book will help you deal with the terrible burdens of anger, love, guilt and confusion that dementia imposes on its victims and those who love them. In this one volume you will find out what to expect and many ways of dealing with it. Personality changes, weird, unpredictable behaviors, outbursts of emotion, loss of simple skills and uncontrollable anxiety can make even your beloved Mom into a terrible burden to her caregivers. How do you cope when your darling Daddy turns into a befuddled stranger? What do you do when the state troopers find Auntie Elma on Highway 19 in her nightie? Who do you turn to for advice? Where do you get the best medical care? Can you keep Mom at home or does she need an institution? This book really does have some good answers and some hints on other questions you may need to answer. This book can save you a lot of stress, trust me, I KNOW THIS! ...more

4

Jan 12, 2011

I had heard that The 36-Hour Day is the Alzheimer's caregivers bible, and I can see why. Having read other books on the subject, I'd say The 36-Hour Day is a more complete reference guide, helpful in many different stages of caregiving. Chapter titles are Dementia, Getting Medical Help for the Person with Dementia, Characteristic Behavioral Symptoms of Dementia, Problems in Independent Living, Problems Arising in Daily Care, Medical Problems, Behavioral Symptoms of Dementia, Symptoms That Appear I had heard that The 36-Hour Day is the Alzheimer's caregivers bible, and I can see why. Having read other books on the subject, I'd say The 36-Hour Day is a more complete reference guide, helpful in many different stages of caregiving. Chapter titles are Dementia, Getting Medical Help for the Person with Dementia, Characteristic Behavioral Symptoms of Dementia, Problems in Independent Living, Problems Arising in Daily Care, Medical Problems, Behavioral Symptoms of Dementia, Symptoms That Appear as Changes in Mood, Special Arrangements If You Become Ill, Getting Outside Help, You and the Person with Dementia as Part of a Family, How Caring for a Person with Dementia Affects You, Caring for Yourself, For Children and Teenagers, Financial and Legal Issues, Nursing Homes and Other Living Arrangements, Brain Disorders and the Causes of Dementia, Research in Dementia. My copy is 306 pages.

Because of my family's situation, the chapters that helped me most at this time were on daily care and medical issues. When these chapters described some issues my dad has, I was able to recognize the symptoms as being connected to the dementia. When these chapters gave suggestions for dealing with arguments and providing recreation, I was enlightened and given hope for more ways to make my dad's last days more enjoyable. The chapters on caregivers' emotions are supportive. I have trouble feeling guilty that I'm not doing more, so reminders that caregivers need respite cannot come too often.

I recommend buying this book and keeping it handy. Read it, but make a point to page through it at least once a month to see what info might refresh you in that moment. ...more

4

Oct 03, 2010

I picked up this book because it was recommended by the doctor who is helping keep up with the progress of my husband's grandfather's disease. He recommended that all family members read it, but much of the family was avoiding it, claiming it was horrible and too depressing. So I offered to read it and pass on the information that I found useful.

It was an extremely interesting book, though very, very repetitive in its mantra - there is no way that any human being will be able to take care of a I picked up this book because it was recommended by the doctor who is helping keep up with the progress of my husband's grandfather's disease. He recommended that all family members read it, but much of the family was avoiding it, claiming it was horrible and too depressing. So I offered to read it and pass on the information that I found useful.

It was an extremely interesting book, though very, very repetitive in its mantra - there is no way that any human being will be able to take care of a loved one who has this disease alone - not without lots of help and support from friends and family, breaks/respite care so the caregiver can have some alone time... or else a complete loss of sanity and possibly harm to themselves and their ill loved one. So many stories in this book focused on people who tried to take care of their loved ones at home but ended up going crazy and having to put them in a home, and feeling horrible about it.

The moral of the story is, if you can't do it alone, don't try. It's not such a bad thing to put them into a home (as long as you've done your research in choosing homes and make sure to visit often!) and often improves their quality of life and everyone's health. If you really do want to care for your loved one at home, it will take a lot of patience (you know, if they want to keep the silverware in their sock drawer... it's not hurting anyone, you might as well let them to avoid a tantrum), a lot of help from friends and family to be sure you get the time you need away from the situation, a lot of rearranging of the home and making the house safe for someone with memory loss and probably loss of coordination as well. Even if they don't remember the happy times shortly after they happen (claim you never visit them at the home, claim you never let them do anything anymore, don't remember that the grand kids just visited or that you just played a game with them...) it is actually shown that although they don't remember why, the happy feelings tend to stay and it improves their behavior and attitude for the rest of the day.

It's a horrible disease, and I cried at some of the stories in the book from real people who have gone through this with a family member. I was horrified by the possible changes that are to come for my grandfather-in-law. It's a sad, sad thing. But this book is useful - points out places you can go for help, things to watch out for, things to make sure the doctor looks into and doesn't just write off as "getting older" or doesn't take care of because they have Alzheimer's disease and won't realize what is going on anyway, ways to improve their quality of life, and a whole chapter on the current research that is happening to help find a cure. I highly recommend it (probably in small doses) for anyone who has a family member suffering from Alzheimer's disease. ...more

4

Jan 13, 2016

A useful and well put together guide about the complex world of Alzheimer dementia and how to care for people who are suffering from it.

4

Jun 22, 2010

This is a fabulous and exhaustive guide for families caring for people with Alzheimer's, dementia, and memory loss. It's been around and continually updated for the last 25 years and is couched in compassionate and clear language.

The book goes through all the stages of these tragic, often irreversible conditions, and how to deal with them in various ways, how to discuss and approach them, what (few) medications and (more) therapies are out there, the history and research behind the conditions This is a fabulous and exhaustive guide for families caring for people with Alzheimer's, dementia, and memory loss. It's been around and continually updated for the last 25 years and is couched in compassionate and clear language.

The book goes through all the stages of these tragic, often irreversible conditions, and how to deal with them in various ways, how to discuss and approach them, what (few) medications and (more) therapies are out there, the history and research behind the conditions and treatments, what support systems exist and how/when to use them, what to think about in terms of cost, nursing care, insurance, personal care, household adjustments, and so on. There's even a chapter for kids to read.

I found it a little weirdly structured - for e.g., the definitions and causes of various dementias are in the back of the book, rather than in the beginning. But maybe they wanted to get to the helping parts quickly as many families know the medical and research stuff already. All in all, great book and I highly recommend it for anyone interested in or affected by these disorders. ...more

5

Apr 22, 2019

Alright, I finished this! And, I can see why this is usually seen as the book on Alzheimer's disease and dementia in general. Very informative and I'm definitely adding this too my practicum project for next year.

4

Oct 25, 2013

“Mom is 87 and we've gone through a lot in the last year or so. She is diagnosed with AD and is at the point where she can't live by herself anymore. We attended an all day seminar on Dementia and Alzheimer Disease and they recommended this book. It is excellent and very thorough. It explains the different forms of dementia and all the various different problems that come with it. It covers research and suspected causes along with other medical problems. For me, the best part was when it dealt “Mom is 87 and we've gone through a lot in the last year or so. She is diagnosed with AD and is at the point where she can't live by herself anymore. We attended an all day seminar on Dementia and Alzheimer Disease and they recommended this book. It is excellent and very thorough. It explains the different forms of dementia and all the various different problems that come with it. It covers research and suspected causes along with other medical problems. For me, the best part was when it dealt with help for the caregivers of AD patients regarding independence, daily care, behavior difficulties, moods, getting outside help, family conflicts and changes in roles, caring for yourself and all the different emotions that come with it, financial and legal issues, etc. I started a blog on "Aging Parents" www.wat2dowitmom.blogspot.com and I highly recommend this book if you have a loved one that has been "slipping" mentally. ” ...more

5

Sep 06, 2014

Where to begin? I read the 1990 version (16th printing) of this originally-printed in 1981 book to glean information in dealing with a loved one who suffers from dementia, so I knew going in that much of the information could potentially be outdated. Given how old it is, it's remarkably current in many/most ways that matter. (If the organization website URL'S and phone numbers are outdated, they're easy enough to find on the web.)

Overall, it was a most helpful read and am so grateful to have had Where to begin? I read the 1990 version (16th printing) of this originally-printed in 1981 book to glean information in dealing with a loved one who suffers from dementia, so I knew going in that much of the information could potentially be outdated. Given how old it is, it's remarkably current in many/most ways that matter. (If the organization website URL'S and phone numbers are outdated, they're easy enough to find on the web.)

Overall, it was a most helpful read and am so grateful to have had a copy land in my hands (sadly, it belongs to the family member who is now suffering through it). The Truth is spelled out in great detail, in turns reassuring and utterly depressing, with plenty of opportunity to identify with the various examples Mace & Rabins give to illustrate their points. I was amazed at how many times I found myself thinking, "That's happened," or "That's EXACTLY how I feel," and I found that comforting.

I have a better understanding now that what I'm seeing in our patient is less "the way she's always been," and more "this is the brain damage at work," and liked that they tended to refer to dementia patients as the "confused person," throughout the book. That helped a lot to drive home the "baffled" feeling that comes along with the memory loss we tend to focus on. It's not just that they can't remember - it also makes no sense much of the time - which must be very frightening, indeed.

There are strategies, techniques and candid explanations that can help improve the quality of life for the patient and their caregiver(s) and, while this particular edition is quite old, they include a lengthy list of recommended reading for both laypersons and professionals. (I wish more doctors would read this!!)

If you're caring for a dementia patient or want to better understand the various dementias for other reasons, this is a good starting point. ...more

5

Apr 30, 2013

wow is all i can say.. i love this book will be buying it for references ..
One of the keys to the success of this book is their acceptance that caregivers are going to have emotions, unrealistic ideas about the prognosis, misinformation about the nature of dementia and will underestimate the diseases effects on them and their family. It's okay to feel guilty, it's okay to feel conflicted, it's okay that you eventually may be unable to care for this person you love, whose personality is changing wow is all i can say.. i love this book will be buying it for references ..
One of the keys to the success of this book is their acceptance that caregivers are going to have emotions, unrealistic ideas about the prognosis, misinformation about the nature of dementia and will underestimate the diseases effects on them and their family. It's okay to feel guilty, it's okay to feel conflicted, it's okay that you eventually may be unable to care for this person you love, whose personality is changing slowly before your eyes.

But once the authors are past the emotions, they also have a huge database of information built on the experiences of others. Time after time, you read in this book "this may happen, but it doesn't happen to everyone." That wide panorama of experience will help caregivers deal with virtually every circumstance that might come up.

You need to read this book, not to become a cocktail party expert, but so you will understand not only what's happening to your loved one, but also to yourself. When do you need to intervene? (Taking away the car keys, for example, is a huge step, both practical and symbolic.) What can you do to deal with erratic behavior? How do you help them deal with their finances?

It is never easy to deal with dementia. It will change your outlook on life, as well as how you feel about your parent or spouse who has dementia. I strongly recommend this book, not only for caregivers but also for those who are only starting to think "Boy, Mom sure has some weird ideas lately." ...more

5

May 29, 2012

I can't imagine a more comprehensive and compassionate book on caring for a loved one with dementia. Even if you are not a primary caregiver, this will be of interest if you know someone who is or have someone with dementia in your life. The author describes the person is trying his/her best, often making an incredible effort to get through each day and the reasons people with dementia do many of the things they do. I am dealing with this right now and it was an eye-opener that made me more I can't imagine a more comprehensive and compassionate book on caring for a loved one with dementia. Even if you are not a primary caregiver, this will be of interest if you know someone who is or have someone with dementia in your life. The author describes the person is trying his/her best, often making an incredible effort to get through each day and the reasons people with dementia do many of the things they do. I am dealing with this right now and it was an eye-opener that made me more forgiving and contains a wealth of information on how best to help a loved one. ...more

5

Dec 14, 2017

“Thorough and compassionate, offering accessible information and practical advice, The 36-Hour Day is a necessary resource for families living with dementia. Still the gold standard, this book is the trusted reference that families turn to first—and over and over—for guidance and support in caring for someone with Alzheimer’s disease.” –Lisa Genova

5

Mar 04, 2014

A classic! It's one of the best books in helping caregivers understand Alzheimer's disease and other types of dementia.

5

May 16, 2013

This book is more helpful than anything I've ever read or an advice I have ever received on Alzheimer's disease. It is the ultimate help for family and caregivers.

5

Aug 08, 2015

I hadn’t had any practical knowledge of Alzheimer’s Disease beyond dealing with end-of-life dementia in my grandparents so I thought my common sense would steer me through this new journey our family is undertaking. It took a comment from a relative, who’s been dealing with neurological problems, for me to realize how inadequate my education was: when discussing getting lost while driving, I inquired why she didn’t just use her iPad? Exasperated, she replied, “Because it’s not that I couldn’t I hadn’t had any practical knowledge of Alzheimer’s Disease beyond dealing with end-of-life dementia in my grandparents so I thought my common sense would steer me through this new journey our family is undertaking. It took a comment from a relative, who’s been dealing with neurological problems, for me to realize how inadequate my education was: when discussing getting lost while driving, I inquired why she didn’t just use her iPad? Exasperated, she replied, “Because it’s not that I couldn’t figure out the directions, it’s that I couldn’t remember how to use an iPad.” That was the beginning of my awareness of how grossly inadequate my knowledge was. Alzheimer’s is a physical disease that eats away the brain: it’s not a mental illness that can be contained or managed.

I had been told this was the definitive book on care and I can’t argue that: it’s thorough and logical and practical and supportive (I read the fifth edition). Some of the explanations gave me tremendous insight into the mind of an Alzheimer’s patient. Other segments provided “Aha!” moments about behavior I’d already seen. It was also good that it reiterated how it’s self-defeating to try repeatedly to teach an Alzheimer’s patient something when it’s beyond their physical ability, so stop with the “Don’t you remember?” questions or the “I just told you” answers that just frustrate and hurt them. Then, of course, there are the many, many things that sucked the breath right out me and brought me to tears.

It took me almost eight weeks to read the book and, until the very end, I read it straight through. I don’t necessarily recommend that – picking segments from the contents may be best for a lot of people. There were times that I just needed to put it down for a while, and I started reading it at times other than before bed as it just wasn’t healthy for me to have these things in my brain as I tried to fall asleep. This was a library copy and I’ll probably be acquiring a personal copy to refer to in future. I strongly recommend it.

I’ve had people in my life die unexpectedly and suddenly, and others after long, protracted illnesses. I don’t mean to dismiss the agony and grief that occurs with those, but this is by far the most horrendous, horrifying, disturbing and cruel illness I’ve ever encountered, for both the patients and those who love them. I hope this book is no longer needed in the near future.

...more

5

Sep 23, 2017

Very informative. This book was recommended to me by a friend and later by out Alzheimer's clinic. It's not a book to be read cover to cover but one where you can find guidance for whatever issue you're currently facing.

1

Sep 08, 2019

Perhaps my own experiences were too far down the line by the time I read this book, but it didn't help me nor live up to the hype.

4

Jan 23, 2019

Highly recommend for anyone who has a family member with dementia.

5

Jul 24, 2018

As the title reads, one of the most comprehensive books on the disease and one that provides copious amounts of practical ideas and solutions.

5

Jul 25, 2012

Update: Taking this book off my "currently reading" shelf since my dad's struggle has ended. I hope to not ever have to return to it, but I will keep it around in case I am confronted with the need again. It is a wonderful and incredibly useful book. Please support the Alzheimer's Association in finding prevention and a cure for this terrible disease.

Original review: This is probably going to be on my "currently reading" list for as long as my dad has Alzheimer's. It's not a book you want to sit Update: Taking this book off my "currently reading" shelf since my dad's struggle has ended. I hope to not ever have to return to it, but I will keep it around in case I am confronted with the need again. It is a wonderful and incredibly useful book. Please support the Alzheimer's Association in finding prevention and a cure for this terrible disease.

Original review: This is probably going to be on my "currently reading" list for as long as my dad has Alzheimer's. It's not a book you want to sit and read all at once, but it contains a great deal of useful information for people who care for and love someone with Alzheimer's, and it describes the stages and behaviors that may be encountered during the course of the disease. The book is compassionately written both toward the patient and the caregiver. ...more

4

Jan 02, 2016

The book is organized so that one can read it in sections as a reference manual for needed tips and techniques. The advice I've read through was quite useful and prepared me for handling specific situations I encountered dealing with my loved one. The chapters I've chosen to read through in their entirety do the same. Alzheimer's is a disease that is very hard on us care-givers because the disease is awful, so if you are looking for a book offering practical advice without sugar-coating, this is The book is organized so that one can read it in sections as a reference manual for needed tips and techniques. The advice I've read through was quite useful and prepared me for handling specific situations I encountered dealing with my loved one. The chapters I've chosen to read through in their entirety do the same. Alzheimer's is a disease that is very hard on us care-givers because the disease is awful, so if you are looking for a book offering practical advice without sugar-coating, this is for you. ...more

4

Feb 12, 2019

"Lower the tone (pitch) of your voice. A lower pitch is easier for the hearing impaired person to hear."

"A person who has dementia loses the uncanny ability normal individuals have for judging the passage of time."

5

Nov 21, 2011

An excellent guide for understanding and dealing with a loved one who has Alzheimer's/dementia. There has been a lot of frustration in my own family with my grandmother's condition, and this book really put things into perspective for me. Instead of being angry and frustrated, and reacting on raw emotion, I've been able to deal with problems as they arise and with clarity.

4

Oct 21, 2014

Really useful reference book for those of us suddenly finding themselves as caregivers for our parents.

5

Aug 18, 2018

I wish I didn't have to read this book. I wish no one had to read a book like this. Not because it's a bad book (because it isn't), but because this disease is so ugly! This book is highly recommended for anyone who is dealing with a family member, friend, or going through dementia themselves. In my particular case, we are dealing with Lewy Body Dementia. I'd heard many people recommend this book in different support groups I'm in. I'm glad to have had the opportunity to have read this but it I wish I didn't have to read this book. I wish no one had to read a book like this. Not because it's a bad book (because it isn't), but because this disease is so ugly! This book is highly recommended for anyone who is dealing with a family member, friend, or going through dementia themselves. In my particular case, we are dealing with Lewy Body Dementia. I'd heard many people recommend this book in different support groups I'm in. I'm glad to have had the opportunity to have read this but it hurt. This book will tell you how it is dealing with someone with dementia. There is no sugar coating situations. It's raw and at times, incredibly hard to read.

The author of this book made certain to cover just about every topic a family member could have when dealing with dementia. Basic symptoms are discussed, medications that are commonly prescribed along with their side effects, behaviors to look out for, modifications that may need to be made to a home or a person's life. Also, how to deal with caregiver strain (yes, it's a real serious thing), how to talk to children who may be affected, how to find a home, if needed, for the person with dementia, resources available, and so much more. As a former member of the healthcare community, I thought this book wouldn't really teach me many different things, but it did.

I highly recommend this book for anyone and everyone dealing with dementia. This book is written so that you only have to read the parts you want to, but I highly recommended reading it all. There is a lot to be learned from the information shared in this book. Finally, I would also recommend that if you are a caregiver, that you take to heart the tips given in this book. Dealing with situations like dementia can cause a lot of strife in your personal life, it can destroy family relationships, and have children feeling left out. Please seek out help from professionals if needed as well. This is tough and know that I'm praying for all of you dealing with this. ...more

5

Jun 07, 2019

In recognition of Alzheimer's awareness month here is my #1 recommended book. Known as the bible for families who are caregivers of Alzheimer's patients, The 36 Hour Day certainly was that for me. A practical guide to understanding what the Alzheimer's patient is going through and understanding their needs and wants. A sort of "What to Expect When Your Expecting" for loved ones caring for an Alz patient. I understand that the newest edition contains info ranging from medical evaluations to In recognition of Alzheimer's awareness month here is my #1 recommended book. Known as the bible for families who are caregivers of Alzheimer's patients, The 36 Hour Day certainly was that for me. A practical guide to understanding what the Alzheimer's patient is going through and understanding their needs and wants. A sort of "What to Expect When Your Expecting" for loved ones caring for an Alz patient. I understand that the newest edition contains info ranging from medical evaluations to finance to nursing homes. As someone who cared for a father with Alzheimer's, a mother with dementia brought on by Parkinson's and a MIL who was was in her nineties I can't stress enough how important this book was to me. I highly recommend it. Compassionate and informative this book will help you understand the disease and the patient. (Don't be hurt when your mother can't remember your name. She's isn't forgetting it on purpose. This isn't about you.) Read it for your own mental health. Finally, I'll share my mantra with caregivers everywhere: The patient isn't giving you a hard time, he's having a hard time. Sending love and support to caregivers everywhere ❤️ ⭐️⭐️⭐️⭐️⭐️ #emptynestreader ...more