The Alzheimer Society of Ireland has invited me to speak during Carers Week 2013 on Wednesday 12th June 2013 in Dublin.

The event provides an opportunity for carers to listen to me speak about my own journey as a carer. It will also provide a space to engage in a focused discussion on some of the issues that I will raise and for people to voice their own opinions on the financial, emotional and social costs of caring
for a family member with dementia.

The discussion will inform future policy work for the Alzheimer Society of Ireland ensuring that the voice of carers continues to be recognized and included as well as empowering carers themselves.

I am very much looking forward to the event and to visiting Dublin again.

Click here to view the video

What was it like?

This book is an account of the author’s nine-year battle to care for her husband who had Lewy Body Dementia.  Dr Jim Tierney was an educated, handsome, well-loved man, who was struck down by this disease, but stayed at home with the support of his wife until he died.  By the end of his life he was totally dependent on groups of home care staff, some of whom were wonderful and some were dreadful.  Because there has been a sudden increase in accounts of dementia in the arts, I was prepared to skim this book, thinking there might not be new things for me, but it was gripping.  It is accessible to any reader, and a carer might learn from Elizabeth Tierney’s experience, even though it was in the United States. The contrast between the attitudes of poor care staff and the attitudes of the best is phenomenal.  It shows what a difference you can make as a care worker or nurse.

What were the highlights?

Elizabeth Tierney is a gifted communicator.  Her pen pictures of staff bring them to life.  It seemed that they had often not been trained in dementia care, but to complete time sheets.  “It’s Jim’s fault he’s not wearing any underwear”…”I tied his shoelaces together because he was playing with them…”   His wife asks was it him surfing rappers’ websites on the house computer, or turning on the TV soap operas?  When Elizabeth pleaded with one member of staff to talk to him rather than about him the staff member was startled and said “Oh! You want me to treat him like a REAL person.”  Her description of marvellous sensitive skilled carers paradoxically raises issues about “ownership” of the patient, where her role as wife was being sidelined by their technical skill and intimate involvement with the man who was once her lover, and her rock.

Strengths & weaknesses:

You need to be strong to read this. In my case, I was more interested in Dr Tierney’s early life after I had read about the end of it, and I went back to read this at the end.  A great strength is that there is a web address where you can go and give direct comments about what you think of it.  The book is therefore a dialogue with others.

Who should read it?

Any nurse working in dementia care, or supervising health care assistants or home care workers would benefit from reading this book.  But it is strong stuff, so be prepared to weep. Think of the awesome resilience of the author the next time you start to say that a complaining relative is “just feeling guilty”.  It’s always much more complex.

“The diagnostic process described by Elizabeth was a drawn out and often excruciating affair. The story will serve as a useful insight for healthcare providers into dementia care from the perspective of the patient and their loved ones”

“This is a story of personal experience with dementia and the lessons learned from it. Elizabeth is at pains to get across that at all times she was trying to be her husband’s voice and to maintain his dignity. With great humour, she readily accepts that she sometimes got things wrong but tells an often worrying tale of the ‘care’ her husband received from the various healthcare professionals whom they sought help from.”

– Tara Horan

brenda Avadian has posted a wonderful

When the world of caregiving descends upon your shoulders if you are not aware of what to expect, your experience will be a struggle.

Elizabeth Tierney, author of Dignifying Dementia–A Caregiver’s Struggle, has a doctorate degree; yet, she encounters just as many obstacles as other caregivers while caring for her husband for nine years. Regardless of one’s education, caring for a loved one is a challenge and as Tierney learns a journey in discovery.

There are many books about caregivers and their journeys. Some are expressed in a unique voice that opens our eyes and teaches us something.

Tierney and her husband’s journey begin after he goes to the emergency room for rectal bleeding and leaves with a diagnosis of dementia. Reeling from such an inappropriately timed comment, the Tierneys try to get on with their lives but this diagnosis haunts them.

VISITS 5 NEUROLOGISTS
They see a neurologist then another and another-five in all. Each offers a different diagnosis ranging from cognitive impairment to Alzheimer’s and an unheard of diagnosis in between. The outcome? Lewy Body Dementia.

For two vibrant people working in the field of education, who welcomed adventure when they closed the door to a secure lifestyle and traveled overseas to work, their lives were about to be reduced to a limited sphere of care

FEELS TRAPPED
A loving wife with good intentions, Elizabeth quickly finds herself overwhelmed by the day-to-day loss of her beloved Jim. Feeling trapped, she tries valiantly to preserve his dignity even during those moments when Jim gets lost in a familiar city or wants to leave after feeling a doctor’s questions are demeaning.

Caregiving takes its toll. After a friend’s helpful observations and advice, Elizabeth accepts that she needs help.

ASKS QUESTIONS
She asks questions—lots of them. She also discovers that despite the advice of professionals to ask questions, many would rather she not ask any. They see her inquisitive nature as challenging. Still, she manages a two-pronged approach to help her and Jim.

For her own sanity, she visits a psychologist, psychiatrist, psychic, and even an acupuncturist. She grows saddened to encounter examples of rigidity among those in the “helping” professions. For example, one doctor insists on praying with her, despite Elizabeth’s insistence on being heard.

IN-HOME CARE?
She looks for professional in-home care for her rapidly declining husband only to learn that quality and dependable care vary as widely as her husband’s initial diagnoses—from the purely loving and attentive caregiver to the one who lacks the necessary skills beyond talking on her cell phone. When Elizabeth speaks up, the CNAs and their employers accuse her of being difficult.

She persists and eventually finds a round-the-clock team who cares for Jim. With caregivers coming and going and overlapping between shifts she copes with the feeling of life in a college dorm by carving out one room of private space.

Elizabeth recounts may of the challenges and impossible moments that are all part of caregiving. At times, I can’t help but think if this were the first caregiving book I read, I would run fast … and far … from any caregiving responsibility!

Yet, Tierney’s book opens our eyes and helps us know what questions to ask. Dignifying Dementia also emphasizes the importance of following up to ensure we receive the care from medical professionals and caregivers that we and our loved ones deserve. Only then will we have the knowledge, hope, and strength to carry on.

Brenda Avadian, MA
Alzheimer’s / Dementia Caregiver, Expert Spokesperson, Coach, and Author
Editor, TheCaregiversVoice monthly Newsletter and The Caregiver’s Voice Book Review

review of Dignifying Dementia on The Caregiver’s Voice.

Video by Howard Baird, Aim and Shoot Photography.

WRRS-LP is a TIC Network.

The Talking Information Center is an awardwinning radio reading service that broadcasts the reading of printed material over an extensive network of commercial and noncommercial radio and cable TV outlets. Twenty-four hours per day, seven days per week, we help keep the visually-impaired and print-handicapped population of Massachusetts more informed.

By turning print into sound, TIC strives to make a difference in the lives of our listeners, many of whom are isolated from the wealth of information available to the sighted world.

TIC broadcasts the reading of printed material over an extensive network of commercial and noncommercial radio and cable outlets. We also stream our audio on our web site, but most of our listeners still listen by using special radio receivers tuned to the sub-carrier of local FM radio stations.