April 16, 2015

Men as caregivers


Men as caregivers : theory, research and service implications

Today, more and more caregivers are male.  Despite this fact, the vast majority of research on caregiving has centered on the experience of the female caregiver.  This volume addresses the fundamental gap in our knowledge and theories about the growing male subpopulation of caregivers.  The authors identify the serious limitations that result from viewing men caregivers through the lens of women's experiences and call for an unbiased and fresh perspective in future research.  Special consideration is given to men who care for a family with dementia; fathers of adult children with mental retardation; gay male caregivers for partners with AIDS; and sons and parent care.

Men giving care : reflections of husbands and sons

Uses data drawn from interviews from husbands and sons who care for their wives and parents with dementia.
Addresses the male caregiving experience through interviews with 30 husbands and 30 sons caring for wives and parents with dementia, shedding light on men in caregiving roles, methods of coping, motivations for male caregiving, and meaning derived from the caregiving experience. Appendices offer guidelines for hiring in-home help and evaluating day and residential care services.

Gender and the language of illness

 Gender and the Language of Illness is based on the findings of a large number of interviews with people talking about their experiences of many different types of illness. Their use of language shows the influences of gender, social class and age and reveals conformity and resistance to gender stereotypes. Women express negative feelings towards illness more confidently than men who are usually more hesitant about expressing a personal response. Women tend to see illness as an opportunity for self-transformation, while men often distance themselves from the experience by pretending it is happening to someone else.  However, there is also resistance to stereotypes by higher class and younger men who redefine their gender identity by using 'feminine' language and by treating illness as an opportunity to develop a new dynamic sense of self.

Coach Broyles' playbook for Alzheimer's caregivers : a practical tips guide

 Tackle the challenges of caregiving with this free football style "playbook" by Frank Broyles, former Athletic Director of the University of Arkansas Razorbacks. The Playbook is an engaging, how-to guide written for those who care for someone with Alzheimer's. Coach Broyles cared for his late wife Barbara, who had Alzheimer's disease.
It wasn’t always easy for me to find the answers my family needed about Alzheimer’s disease, and at times I was frustrated and confused. I promised myself that one day I would share all that I had learned—from my research and my experience—with other families that were dealing with Alzheimer’s. This dream came true when the Playbook was created and made available to my fellow Arkansans. We received calls and letters from so many people thanking us for sharing our story and information that I decided to make my dream bigger, and share the Playbook with people across our country. I gathered my team, and together, with the help and support of many Arkansan people and companies, we were able to generate the funding needed to make this Playbook available nationwide, free of charge, to anyone wanting information on how to care for a loved one with Alzheimer’s disease. It is our gift to you, in hope that you can benefit from my experience.

I wish I were a leper : the diary one couple's struggle with fear, faith and Alzheimer's

 ...based on diary and journal entries which accurately record the journey he and his wife Margaret O’Rourke took with Alzheimer’s disease. Because of its early onset, the disease rapidly adversely affected Margaret’s quality of life. When asked why she would ever wish to be a leper, Margaret's faith filled response was, "If I were a leper He could heal me". This is a story that grabs the reader's attention from the outset. It is a record of unconditional love, pain and suffering, hope and despair, anger and elation, as well as of a personal conflict of faith, and belief in a God of love and compassion. It speaks clearly to all who care for those suffering long term terminal diseases, especially those allied to dementia.

Jan's story : love lost to the long goodbye of Alzheimer's

...memoir, by CBS correspondent Barry Petersen. The book has generated some controversy. Petersen’s wife, Jan, was diagnosed with early-onset Alzheimer’s at the age of 55. Petersen’s account of how Alzheimer’s impacted their relationship is frank and heartbreaking. After arranging for her care at home for several years, he finally places her in a residential facility as the disease progresses. Eventually, at the point where his wife barely remembers who he is, he begins a tentative new relationship with another woman.
Amazing Grace : enjoying Alzheimer's

Ray Smith has never been what you could describe as a conventional man. He trained as a nurse at a time when male nurses were something of a rare phenomenon and established a travelling art gallery touring the lowlands and highlands of Scotland, selling old masters and contemporary art from the back of his van.
The story of a British man whose wife Grace developed Alzheimer's at 56. Rather than let her vegetate, he travelled the world with her, even though she was confused and incontinent, going to places as exotic as the Galapagos, India, and Sri Lanka; took her on long hikes; and. continued to have sexual relations. "Ray never lost sight of Grace; he did not reduce her to her disease; he was able to see her as she once was and as she had become simultaneously."
You may think caring for a patient with progressive dementia would be hard enough in the familiarity and comfort of your own home, but early on Ray decided that he wanted to give Grace the very best quality of life he could and for him that meant ensuring that she continued to benefit from stimulation and enjoyment, even if her pleasure could only ever be transitory. To this end Ray sold their Scottish home and used the money to take Grace travelling on a shoe string....

Staying afloat in a sea of forgetfulness : common sense caregiving

Gary Joseph LeBlanc is a columnist and book dealer from Spring Hill, Florida. He was the primary caregiver of his beloved father stricken with Alzheimer's disease for nearly the past decade. LeBlanc's weekly column appears in the Hernando Today, a Tampa Tribune Publication. His writings offer insight and hope through his own 3,000 days plus of caregiving, dealing with the memory-impaired, given in a caregiver friendly manner...
When my father was first diagnosed with Alzheimer's, I read everything I could get my hands on about the disease. Right off the bat I could tell if it was written by a physician, pharmaceutical company or even a nursing home. When caregivers are looking for help, the last thing they need is medical text so complex they already forgot what they read by the time it's laid back down. This is what got me started on writing about common sense caregiving, which turned into a weekly column and now into this book. My goal is to make this book as "caregiver friendly" as possible. Sharing my triumphs and hardships from my plus three-thousand day campaign in dealing with the disease of Alzheimer's and the world of memory-impairment.

Where did Mary go? A loving husband's struggle with Alzheimer's

Nothing in my background prepared me for the unbelievable challenges I lived through during those years," says Frank Wall. "As the primary caregiver for Mary, I endured an emotional rollercoaster ride I can never forget. I feel compelled to share my experiences with those who may follow me in their new roles as caregivers."
Mary was the victim of a triple assault on her mind and body Parkinson's disease, multi-infarct dementia (frequent small strokes), and Alzheimer's Disease a combination without identifiable cause, explanation, or cure - her husband shares his very personal account of their seven-year struggle.  Confronted with the care of his beloved patient in all facets of everyday living, Wall discusses candidly, and in simple terms, this stress- and emotion-filled time. He describes in detail the many caregiving problems and frustrations he encountered and the solutions he found to cope with daily obstacles and personal anguish as Mary slowly slipped away. He gives us a roadmap explaining what to expect as the disease progresses, including some of the signals, symptoms, and reactions to mental confusion, incontinence, falling, wandering, and other related problems. He conveys Mary's reactions at various stages of her illness and her ability to cope with these diseases and their effects on her family. Intertwined throughout are Frank Wall's feelings of guilt, anger, and frustration as he faced the overwhelming responsibility of life and death situations.

Close to me, but far away : living with Alzheimer's

Wheeler provides insight into what a caregiver's day is like, as he shares his most intimate thoughts with us. The book provides a window into the author's personal life as he seeks to confront his own ineptitude and the occasional despair he feels as he deals daily with Alzheimer's. He also touches on the question of what keeps him going through times of exhaustion and frustration. Part of his answer lies in holding tenaciously to memories, and part lies in what he believes is a human's extraordinary capacity to continue plodding along simply because he must. Wheeler also believes in rejoicing in the beauty that can be experienced, and he believes in humour, humour achieved only by distancing ourselves from the events that so deeply engage us. And, of course, there is also the indefinable nature of love.

A funny thing happened on the way to the nursing home: a different handbook for carers of dementia patients

This short, funny and sad book is a series of snapshots rather than a handbook as such. It describes, with a mixture of humour and pathos, some of the experiences of caring for a spouse with dementia, and in so doing imparts practical and useful advice. It is one person's view of how to manage an increasingly common problem, and explains why a sense of humour, and indeed a sense of the ridiculous, are very necessary attributes for surviving the caring process.
 The author's methods of managing his wife's difficult behaviour are excellent examples of lateral quick thinking. Dealing with an imagined visit from a duchess at 2 am, or the urgent need to plant a tree in the middle of the dining room floor, requires a good imagination and fast footwork - it contains some useful ideas for dealing with some of the more difficult behaviours associated with the dementing process.

*these and other resources mentioned in the book review are  available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

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