Reviewer Richard Blake wrote "Pauline Boss writes with authority, conviction, and compassion. "Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief" will be a welcome addition to the resource shelf of individual and professional caregivers, family members, counselors, and clergy. Dr. Boss introduces a whole new concept of managing caregiver stress and grief."
That pretty much says it all. (And makes a tough act to follow! A tip of the hat to you, Richard.)
We all think we're familiar with dementia until it strikes someone close to us. Then we find out "the hard way" that of all the terrible illnesses that can befall us, this one is as close to pure cruelty as it can get.
While nothing can completely prepare us for "stress and grief" that accompanies dementia, "Loving Someone..." is a GREAT place to start because it's written specifically for you and me the caregivers rather than as a "textbook" discussion of this horrendous disease.
I found it to be well-written, insightful, wise and compassionate. In fairness (considering that at the time of this writing there are two "scathing" one-star reviews)I'm compelled to mention that an immediate family member has just been "officially" diagnosed by two doctors (i.e. "second opinion") and this is the FIRST AND ONLY book I've read so far. On the other hand, we've purchased a total of five copies between family members, and we've all found it to be immensely helpful at this early stage. I don't think any one book can cover this topic "from A-to-Z". As reviewer Blake said, it "will be a welcome addition to the resource shelf..." I agree, except that I'd consider it a good STARTING POINT, and that the additions follow as needed!
I recommend it without reservation.
This book doesn't tell you how to get your Dad to take a shower. It doesn't tell you how to take the car keys away from your mother. It doesn't tell you when it's time for assisted living or nursing home care. Instead, it tells you how not to go crazy right along with your loved one. Actually, it helps you understand that you aren't crazy -the conflicting emotions you're feeling are normal.
The tone of this book is a bit medical and formal at times, but not so much that a tired mom caring for her aging mother-in-law with alzheimers can't read it. I have to admit that I was a bit disappointed at first that this book wasn't going to help us figure out the issue of the car keys and assisted living, but I was wrong. I was wrong to not put value on reading about my emotions, my husband's emotions, and our mental health as caregivers.
Two of my favorite chapters included the chapter on Family Rituals, Celebrations, and Gatherings as well as the chapter outlining Seven Guidelines for the Journey. As the holidays are approaching and we're trying to figure out how to adapt them yet again for my mother-in-law's increasing confusion, I needed to read that. And with a recent increase in her care needs, I also needed to read the seven guidelines for the journey. Because it is a journey ... a long and tiring journey. But Pauline Boss helped me see the benefits of the journey again.
Buy Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief Now
This is a fantastic book. I wish that it had been available when my mother was diagnosed with Alzheimer's disease several years ago. I am giving my copy to a friend who, after reading it immediately, will mail it to another friend whose mother has just been diagnosed with this horrendous disease. Dr. Boss' emphasis is on the caregiver rather than the patient and what the caregiver can do in order to be both more effective ("isolation leads to higher burden and depression for caregivers--and in turn, this leads to more behavioral problems in the person who has dementia") and survive with his/her own life intact. The author gives a sobering statistic: "caregivers die at a rate 3 percent higher than people the same age who are not caring for someone with dementia."
Dr. Boss uses the words "ambiguous loss," over and over to describe when your loved one is here but isn't here and you are faced with an imperfect relationship that is not the way it once was, it never will be that way again and it will get even worse. One thing you can do to make things better for everyone involved is to continue with family rituals: celebrating birthdays, weddings, graduations, Thanksgiving and religious holidays as well. She also discusses the difference between depression and grief, reminding us that all too often professionals see a caregiver as being depressed she/he is actually experiencing extended grieving and is sad, a perfectly normal phenomenon for someone whose loved one is slipping away with dementia.
The author, to her everlasting credit, debunks the myth of that awful word "closure," which she points out has been done to death by pop psychologists and television reporters. In our society where everything should be easily cut and dried, we are supposed to get over everything and get on with our neat lives. She points out--and gives example after example--that that is not the way of the world, particularly when it comes to caring for someone with dementia. The latest studies on the subject indicate that we can live more easily with grief if we do not try so hard to get over it and that dementia teaches us that grief's door is never completely shut. (The great American poet Emily Dickinson, whose poem on hope Dr. Boss quotes, may have had that door of grief in mind when she said that sorrow has its own season.)
The author emphasizes that the caregiver should avoid isolation at all costs and seek out what she calls his/her psychological family--those persons you have created in your heart and mind as your family--as well as doing something for yourself on a regular basis, whether it be going to a museum or a movie, reading a book or poetry, engaging in physical exercise, playing cards one night a week with friends, going out to dinner, whatever will make your life easier and relieve your stressful situation.
Dr. Boss also includes a list of warning signs you should look for if you are in need of professional help while being a caregiver and suggests that you not use the professional who is caring for the person with dementia but rather see someone else. She encourages us to just do the best we can do, that hope lives in understanding that we are doing the best we can do, to remember that there should be no stigma associated with dementia, that this disease is not anyone's fault, and to remember that life isn't always fair.
This writer, a psychotherapist now in her 70's, is obviously someone full of a lifetime of wisdom. I came away from this book convinced that Dr. Boss is a wonderful practitioner. Had I had any doubts, I would have been sold when I got to the passage about her father who came to the United States in 1929 from Switzerland. Although he loved his adopted country, he carried for the rest of his life a photograph hidden in a secret compartment of his billfold of his hometown, Burgdorf, Switzerland. You can feel Dr. Boss' deep love for her father as she describes finding this photograph after her father's death. She uses his situation to illustrate our two families, the one present and the other, the one we hold in our "hearts and minds." We can keep those we love who are out of reach forever with us in other ways.
If you are taking care of someone with dementia or know someone who is--and most of us unfortunately do--this book, written in accessible language for the ordinary reader rather than professionals, has page after page of lifesaving advice and help. It concludes with a long list of available resources.
Highly recommended.
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This book is flowing and clear, and reads as though the author were in the room speaking her words. It really touches the heart of the matter, the reality of loving someone who is there, but not really (or not constantly). It affirms the scope of the matter of being in relationship with someone who in some way is missing, and in the case of dementia, someone who remains with you, in ... odd and diminished relationship, requiring often the care given to that of a very young child. I found the book very moving, comforting, and useful (my Mother has a moderate form of dementia), and have already given copies of it to family members.
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Ambiguous loss. This is the term Pauline Boss uses to describe Dementia. She hit the nail on the head! My Mother in Law was diagnosed several years ago with this cruel disease and has progressively drifted further and further away from us.
Reading through this book I felt as though I was sitting with someone that has been down this road and understands just how the disease effects everyone in the family. I've read and reread passages and now keep it close by. Its helpful to re-read a few pages on those difficult days when you feel no one understands. Thank you Ms. Boss.
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