Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.


Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Wednesday, October 17, 2018

Meet Jane Mullins, author of "Finding the Light in Dementia"

Reposted with permission from AlzAuthors.com


By Jane Mullins Ph.D., from Cardiff, U.K.

I am a nurse who has worked with people who have dementia for over 25 years. This has included nursing in a care home where I have helped support people during their transition from home. This has included finding out about their life stories and getting to know them, working together in understanding their past, identifying their present needs and future wishes. I have also cared for people who have dementia in hospital and seen the impact that an admission can have on the person and their dementia. Here, I recognised the importance of involving families and keeping familiar meaningful objects with them when in unfamiliar places. My role as a nurse in memory clinics included supporting people and caring for them during their diagnosis of dementia. This involved offering them and their families one to one counselling, practical advice and support. It also gave me the opportunity to understand the real concerns and issues that people who have dementia and their families experience. As well as my practice experience, my Ph.D.; a Suitcase of Memories, involved creating a multisensory reminiscence approach to counselling and provided therapeutic support to people living with dementia and their partners.

By listening to and observing people who have dementia and their loved ones, I have learnt so much about how it can affect them and have uncovered common features that may help. For example, many caregivers would be upset when struggling to communicate with their loved ones and not understand why they may behave differently over time.

By drawing from their experiences and up to date research, I set out to write a monthly column for a local newsletter; the Mumbles Times and a national newspaper; the Mature Times. I wrote every month about different aspects of how dementia can affect people and considered ways that would help them, based on my knowledge and up to date research. I gained much positive feedback as the months went by and a number of readers suggested I put the columns together into a book – Hence, Finding the Light in Dementia, a Guide for Families, Friends and Caregiverswas born. I feel that Finding the Light in Dementiais authentic and reflects my approach to caregiving as it also includes the experiences of the many people I have listened to with their stories interspersed throughout. Finding the Light in Dementia, a Guide for Families, Friends and Caregivershelps all affected by dementia by giving confidence to care. It contributes to breaking down the stigma of the dementia by explaining how a person experiences the condition and shows that by adopting positive approaches to care and the environment, the negative effects of the condition can be reduced considerably.

Amazon review

This is an excellent guide for anyone who has a family member or friend suffering with dementia. Really helpful advice & explanations on why certain behaviours happen & how to deal / cope with them. The best bit about this book is it is easy to read - short chapters & clearly written with very little jargon, so it is very accessible. It's also helpful to have sections for making notes about your own circumstances, the idea being that you have the day to day information to take to a doctor if needed. The book takes you through from initial diagnosis all the way to making the decision to look at residential care, and it truly does "find the light" in all stages of that journey. It is reassuring for someone who has little or no experience with dementia to know that as a carer they are not alone, as quotes & comments from real life people are included throughout. It is a very positive book & has real tips & techniques for dealing with the situation of having a loved one suffering from such a cruel disease. Sandra, Daughter

Bio

Dr. Jane M. Mullins is a dementia nurse consultant who has devoted over 25 years to the study and practice of dementia care. Through listening to and supporting people and their families during their diagnosis in memory clinics, caring for them in hospital and in care homes, she has helped throughout all of the stages of their condition.

Jane has uncovered certain common features that may help caregivers and the people they care for find better ways of coping. Her practice experience is backed up by expert knowledge gained from attending conferences, continuing education, lecturing and keeping up to date with research, as well as studying for her Ph.D. which explores multisensory ways of communicating and connecting.

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