Joy In Caregiving
Joy Walker - Caregiver Advocate, Writer
Book Reviews


A Caregiver's Guide to Lewy Body Dementia
,by James and Helen Whitworth
I would consider this the definitive book about LBD and how to care for someone who has it.  The Whitworth's were instrumental in forming the Lewy Body Dementia Association, and James' first wife suffered from the disease - so they know whereof they speak!

 I consider this the Bible of LBD care; my copy is underlined, written on, and has sticky tabs poking out from the side to mark some of the most important information.  I recommend it to almost every single caregiver I speak to as being probably the best resource they could get to help them in their situation. 

 The Whitworth's really understand LBD, as well as it can be understood, and they know what it's like to be caregivers.  They go through most of the stages of the illness, the symptoms and behaviors, and what the end of the disease looks like.  They also list the medications that are really contraindicated for LBD, including antipsychotics and anesthesia, and which medications might help the disease. 

 All of this information is conveyed in a clear, straightforward style; neither patronizing nor overly complicated.  It is not overwhelming with it's information, and it really helps people know what to look for and what they might expect from the disease.  It is as if you are sitting and having a conversation with someone who knows a lot about LBD.

 Regardless of whether you and your family are newly affected by the disease or have been dealing with it for some time, this book can help you out.  Order it on Amazon today, or go to their website, listed on my sidebar,  lbdtools.com

 

 Living With Lewy's: Empowering Today's Caregiver, Amy J. Throop and Gerald S. Throop.
We all know that I love the Whitworth's LBD guide for it's plain-speaking and information, but I think this one comes in a close second.  It is not really a memoir, although it has some personal narrative and descriptions in it to illustrate what they are talking about.  Living With Lewy's is incredibly comprehensive, and very well-organized; if you don't have much time to read the whole book but need information quickly, you can turn to the section you need easily. 

The information is straightforward and can be easily distilled to doctors, family members, friends, etc.  It is encapsulated and easy to understand, with clear explanations and resources.  It's a great resource to keep on hand for quick referrals or to give to people newly experiencing the joys of LBD and caregiving.  ****!

An Unintended Journey, Jean Shagoda Yagam.
 This is a big book, which ordinarily I like, but which might scare away caregivers who don't have much time to read. The title makes me think of one of the Hobbit books, which makes me laugh, but I think it is right on as most of us had no idea we would be making this kind of journey, nor would we have intended to, given half a chance. The reason it is so long, I found, is because it is packed full of information and stories, including a lot of little tidbits that a lot of other books don't cover (the type of tidbit that I'm always thinking needs to be covered!)

 I really enjoyed the book. Shagam's mother suffered from dementia that made her progressively more agitated, temperamental, and difficult to handle. Shagam shares enough of her back story, however, that we get the sense that her mother may have always tended toward the difficult and that they had a complex emotional relationship from the beginning that made caring for her even more challenging. Shagam begins the book with some good, general information about dementia and aging and then segues into housing and care.

 Shagam starts out caring for her mother, Dorothy, at home, and she goes into the details and challenges of hiring and managing in-home caregivers; managing different needs and behaviors; and even family dynamics - one of my signature and favorite subjects. Shagam seems to have made the decision to leave the really in-depth, specific legal and financial information to other books, of which there are many, although she does cover the basics. (Living With Lewy's - Amy Throop; The 36-Hour Day - Nancy Mace; The Elder Law Handbook - Peter Strauss.) Instead, she focuses on the 'little things', the kind of details and information I like and try to include in my writing because they are important things that all caregivers deal with but that a lot of books don't find interesting enough to cover. Things like behavior modification, and embarrassing events, creativity, and making your care-taker happy with little details like favorite foods - interesting details like that. She even goes into how you might tell your loved one they are moving into a facility, which most books don't cover.

 Her book runs the gamut, from diagnosis to facility living to hospice care and what happens after death. There is a helpful and interesting section about the bureaucracy and paperwork that comes after a death, and, of course, ways to deal with grief and feelings. At the end, she includes several stories of the experiences of different families that I enjoyed reading.

 From soup to nuts, Shagam covers most of the experience of caregiving, in a well-written, enjoyable read. The sections are short and interesting, so if you didn't have much time at the end of the day, you could read one or two sections. I really liked the book - it spoke to many of the unique experiences I've had with dad and the information and details I wish I could have found when I was first caregiving and on my own.  ****


Living at the End of Life, Karen Whitley Bell.
I really liked this compassionate, friendly book about what to do when you've reached the last few months with your loved one.  It is informative, explanatory and easy to read.  I found that Bell really knew her stuff; her book was relatable and gave easy to understand advice and explanations about what the end will look like and the steps families might want to take to make the experience as comfortable and smooth as possible.  If at times a wee bit precious and smug, and possibly even condescending, the author certainly has the chops to frame her book however she likes.  She has obviously put in the time experiencing end of life events and issues with individuals and families to be able to speak about her subject with confidence. ***

 When Parents Die, Rebecca Abrams.
I have read a lot of books about grief and loss, including quite a few on losing a parent, and this is hands down the best one I've read.  The lovely thing about it is that it's really applicable to the loss of any loved one, not just a parent. The other lovely thing about it is that while it is ostensibly geared toward children and young people who lose a parent, an adult having just suffered a loss could read it and absolutely feel understood and comforted.

Abrams knows whereof she speaks, having lost her father and stepfather almost within the same year; a year during which she was attending University and struggling to begin an adult life.  She describes her story, feelings, and experiences, as well as those of other subjects, so well and so clearly that a reader can completely identify and feel understood.  She describes the different kinds of losses it is possible to experience - public, private, other changes - and how they can persist and need to be acknowledged.  She also discusses mourning and its progress and includes ways to live through it.

"Getting on with life does not mean you must forget all about the past, but rather that you  must make a place for the past in the present and the future."  I like this so much more than the accepted 'get over it.'

This is a book you could give a young person, a teenager, someone in their 20's, 30's, 40's, and on and feel sure you had given them something comforting and helpful.  The author is British, although I found the book easily on Amazon, and all the resources in the back, while good, are only applicable to the UK.  I highly recommend!  ****


Knocking On Heaven's Door, Katy Butler

I just finished a really good, if disturbing book called, Knocking On Heaven’s Door, by Katy Butler. It is a memoir describing Butler’s experiences over a period of several years, as her parents aged, became ill and died. The core of the book, however, are the struggles she and her mother went through in their efforts to help her father die with dignity. Butler’s parents were both reasonably healthy and independent as they aged, living in their own, beloved home. Then her father suffered a serious stroke in his late 80’s and the family were talked into inserting a pace maker to assist his heart. They would have no way of knowing how difficult that procedure would make her father’s, and mother’s last years.

As her father slipped into dementia, and increasing ill health, Butler’s mother was forced into greater and more difficult caregiving responsibilities, until her own health was at risk. Neither could find a doctor that would turn off the pacemaker and allow her father to die quietly. After her father’s death naturally, but not peacefully, Butler’s mother insisted on being allowed to choose how she would die; something that occurred a year or so after her husband’s death, but which would be much more natural and peaceful.

The author does an excellent job at conveying the horrors of declining health as well as the incredible stresses of being a caregiver, especially an older caregiver. She did extensive research on the changes in medical technology and ethics over the last 75 years and she does an amazing, and relatively objective, job in presenting the issues to the reader. Although the book was difficult to read due to subject matter, it was very well written and thoughtful; I think it is absolutely necessary for families who will soon be facing these issues to read it.

 
Caring For Mother
,
Virginia Stem Owens.
This is pretty much strictly a memoir, without any of the references and resources that many caregiving/dementia books have.  That said, I thought it was a lovely book, well-written and thought out, and it really conveys how disruptive to one's own, established, life, it can be to have to take on caregiving duties.  The author is in her sixties, around the time one would expect one's parents to start failing, yet she is still somewhat in denial of her parent's age and condition - as we all can be - and it takes her a while to accept what is happening, both to her parents, and to herself. 

It is obvious that Owens is a religious person, yet she manages not to overly-impose her belief systems on the book, infusing it instead with the more organic spirituality of family love and awareness and acceptance of loss and mortality. It is a gently-paced memoir, and she really describes accurately the experience of living with institutional care and the difficult, almost impossible, choices we are often faced with when it comes to getting care for our loved one.  ***!

Activities to Do with Your Parent Who Has Alzheimer’s Dementia, Judith A. Levy: I was contacted by this author and asked to read her book so I ordered it and read it. Levy cared for her mother with Alzheimer’s so she knows what she’s talking about, and she inserts little stories about her experiences. She has really focused on interacting with the care receiver, however, which I really liked.

The activities range in nature from things to do with your hands to more active possibilities, to things you do on behalf of your care receiver like reading to them, and could be tailored to your own particular situation. What’s more, she has provided space in the book for notes on the success of each activity, how and when it was best to do them, and ways you might have tweaked the activity to work for you, but wouldn’t necessarily remember the next time.

 Coming from someone who wanted to interact with her care receiver but didn’t always know how, I recommend this highly! I remember spending time with Dad and not knowing what else to do with him! Exhausted from walking, tired of spending time in museums and malls and parks – there were just times when I didn’t know how to keep him entertained. I would have used many of these suggestions.

 Levy has managed to come up with a huge variety of activities to do with your care receiver so you can continue to interact with them, spend valuable time with them, and make them feel engaged and loved. I think this book is just great! ****

 
Sundown Dementia, Vascular Dementia, and Lewy Body Dementia, Lyndsay Leatherdale: When I first saw this one on Amazon I was excited. Sundowning - a syndrome that happens in the late afternoon, where people with dementia become agitated, confused, angry, or may start to act out, lash out or behave strangely – can be so exhausting for everyone involved that any explanation or help in how to deal with it is welcome. In addition, any new information about Lewy Body dementia is a good thing.

 This book was written by 20-year-old Lindsay, using her own experiences with her grandmother, in an effort to help other caregivers. While I applaud Lyndsay’s efforts, the book seemed a little simplistic and didn’t really seem to have much new information. Her advice on ways to deal with sundowning were good, but have also been given in other books and on forums. It was pretty straightforward, however, and a quick read, so might be a good choice for a new caregiver who didn’t have much time. **

 Slow Dancing with a Stranger, Meryl Comer: This is really just a memoir – no how-to’s and advice here, really, but it is a good one. It is heart-breaking at times, to read what Comer and her husband went through as he was slowly stricken with Early On-set dementia. What compounded the problem was the fact that this happened twenty years ago, when dementia was still known as senility, and few people knew that it could strike someone younger.

 Comer was forced to give up her own work to become her husband’s full time caregiver. He was a doctor of some reknown and no little intelligence and to have to witness his degeneration was terrible for her. However, the sacrifices she made on his behalf were considerable – and heroic. I think this would be a good read for potential caregivers, because she details the mistakes that they made and the things that she would have done differently, i.e, better financial planning, better communication between them about finances, better understanding of medical, care, and end-of-life wishes.

 It is a little weird to be grateful for the advances in understanding and awareness of all types of dementia that have occurred just in the last ten years; especially when we acknowledge that many of them came on the backs of caregivers and dementia sufferers. But we really should be thankful for the fact that it’s not nearly as bad as it used to be – and there are measures being taken. It’s also not a very long book, and is entertainingly written. ***

 
Elder Rage
, by Jacqueline Marcell.
 This is a memoir with helpful tips and resources in the back.  It details the struggle she had to live with and care for her ailing mother, while at the same time dealing with her father, who is going through dementia-induced rages.  As the story progresses, we learn that he has always been somewhat abusive and we learn a little bit about her parents' relationship and how Jacqueline sees it.

 It seemed like it would be an interesting read and she certainly has an eventful, challenging story to tell, however, the way she's written it was a little tough to read, in my opinion.  She has a background in television, I believe, and almost every sentence is punctuated by some reference to a tv show, or character, or well-known line in movie.  It gets a little overwhelming and distracting, at times, and it really detracted from the story she had to tell. She also tries to write in the vernacular, which is very hard to do.  She does list some helpful tips and resources through the book, that she learned while dealing with her father and mother's different needs and issues.

 On the whole, it seemed a little voyeuristic and sensational.  I empathize with the terrible experiences she and her mom had to go through but I'm not sure reading this book would be that helpful to anyone looking for support or a similar experience.  I'm sure there are more cases than we know of, however, of caregivers trying to care for a family member with a history of abuse, and the little bits of information she gives on that might be helpful for someone in that situation.

 

  The Caregiver's Path to Compassionate Decision Making, by Viki Kind, MA.
Kind is a bioethicist and counselor.  This is not a memoir, per se, although she uses examples from her experiences with her mother and father to illustrate her points, as well as a few stories from other caregivers.

 Viki's main goal is to help anyone caring for another to know how to make the best life and health care decisions possible, from the point of view of the person being cared for, i.e. what would that person decide if they had the capacity.  It was very straightforward and she gives the readers very clear steps to follow to make the best choices.  Making decisions that impact another person's life is a very difficult and soul-searching process, as caregivers know, and she gives a structure whereby it can be done without too much second-guessing.

 A lot of people, when they enter the world of caregiving and making medical choices for another, have not had a lot of experience with the medical world.  I did only because I have a chronic illness, and I still found it a little challenging to navigate.  Viki helps the reader navigate this world somewhat, including the ways that most doctors and hospitals think about care and risk and sustaining life.  I enjoyed the book and feel like I got some good tips and information on how to make the impending choices for my Father.  I would actually recommend this as a good book for everyone to read, because, while you may not have ever have to experience caring for someone with dementia, many of us may have to make choices for a spouse of sibling. Buy it, read it, and pass it on to your spouse or sibling or friend!


Inside the Dementia Epidemic, by Martha Stettinius.
I really like Martha's story and the way in which she told it.  She delivers a mostly chronological narrative from the moment she and her mom realized something was seriously wrong, through the various care and housing choices she made for her mother, to the facility where she lives now.  I think one of the things I really enjoyed about it was how obviously conflicted Stettinius was about the relationship she and her mother shared.  We need to hear more about the dysfunctional relationships and how they affect caregiving, and Stettinius doesn't disappoint.  We discover that her mother was an alcoholic and suffered from depression, and how that affected Stettinius as a child and how it makes her feel about caregiving now.  She brings her mother into her own home for several months, and is really honest about how the stresses and tensions of this arrangement affected her and her young family.  We get a really good look at the experiences of a member of the "Sandwich Generation." 

The book is also unique in that Stettinius moved her mother several times, to, and from, several different types of facilities.  Her experiences with all of them and their staff and procedures was very interesting and informative: so many memoirs detail caring at home, so I appreciated seeing one where more of the care was in a facility.  All in all, the book was very well written, entertaining, and evocative; well worth the time spent reading it.  ***

Keeper, by Andrea Gillies.
I admit I found this book fascinating, coming as it does from a British author and detailing some of the ways that caregiving, and governmental caring bureaucracy, differs from the US.  The author, her husband, and three adolescent children buy a large, old house in the North of England in order that they can provide housing and care for her husband's parents. His mother has progressive dementia, and his father has multiple health problems that keep him in a wheelchair, depressed and angry.  The couple have been married for over forty years and are dependent on each other emotionally, yet he can't seem to accept her dementia and insists that she continue to act and think in the ways she always has, resenting her for needing so much care, but being unable to sleep when she is spending time at respite care.  Seeing his denial of the situation, and, indeed, of his own health problems, coupled with his love of and dependence on her was fascinating. 

Gillies ends up providing most of the care for both her parents-in-law, and she goes into eloquent detail about the increasingly difficult and heart-breaking symptoms and behaviors exhibited by her mother-in-law and her increasing inability to deal with them. Gillies' description of the house and the countryside and the comfort she attempts to elicit from living where they do are eloquent and beautiful. The family attempts to go through the British health and care system to obtain in-home aid as well as respite care, and are repeatedly let down and failed by the system.  It seems bureaucracy is the same whatever country you're in! Ultimately, their attempt to provide care at home, as a family, is a failure and the couple must be placed in a facility. I usually read these types of book as education and research, but I found myself not wanting to put this one down. Gillies writes beautifully and she really draws you into her experience and that of her family.  You feel empathy for the entire family and an appreciation that sometimes the best laid plans truly do go awry. ****

Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide – Nataly Rubinstein.

There are now several different books claiming to be the complete caregiver’s guide, with varying truthfulness. I did enjoy this book, although I don’t think it is the best of its type that I have read. I enjoyed Janet Shagam’s, An Unintended Journey, a little better. Rubinstein certainly knows what she’s talking about: not only is she a social worker who specializes in geriatric care management, but she cared for her mother, who had Alzheimer’s.

Like many, the book is a combination of memoir and information and she does give a lot of great tips in each section for different things like difficult behavior, communication, and caring for the caregiver. I enjoyed reading the bits about her mother and her own life, but I thought the tips were probably the best part of the book.

It is a thick book, with lots of information, most of which is covered in other, shorter, books like, Learning to Speak Alzheimer’s so if you don’t have the time or patience for a long read, choose other resources. It is kind of nice to have it all in one place, however, and I suppose you could jump around. In the end, she talks about respite care and institutionalized care but stops the journey there without covering end of life. All in all, not a bad resource if you have the time or just want a reference book. **

When the Time Comes – Paula Span.

I really enjoyed this book, which was an informative resource, memoir, and sociological study. It did cover some important issues with humor and compassion, as well as information. Span followed several families over an extended period of time as they wrestled with the illness and age-related issues affecting their loved ones and gives us fascinating insight into other caregivers’ lives. She also shares her own story about her mother’s dementia and her increasing worries about her father as he ages. She describes her book as a, ‘support group in print.’

Span describes the process of caring for our loved ones, starting with home care and its good points and pitfalls. The stories about families trying to hire private caregivers made me laugh because I, too, had my issues with private aides. She moves on into Assisted Living and its pros and cons, including a few tips on how to find a facility and what to look for. There are good facilities and bad facilities, and some that are in between. I always like seeing someone talk truthfully about facilities because they sometimes get a bad rep, but like anything else, they run the spectrum.

Dementia, itself, and the ways we end up having to deal with it, is often described as nothing but bad choices – choosing the best of the worst. To a certain extent this is true, as none of us wanted to have to deal with it in our loved ones. I like Span’s message of hope in the darkness, however, and her descriptions of how some families have chosen to deal with the way their cards were dealt. She focuses on a few issues, which I think is a great idea, since the step-by-step eldercare manuals, like the one above, can be too broad. I really enjoyed this book, and I would recommend it for anyone who wants to read about people experiencing the same problems they are, with compassion and humor. ****

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