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
My heart is pounding just reading your review. However I must say that it is comforting to know that the author with so much background had just as much difficulty as the rest of us. I was occasionally challenged, even after caring for Mom for over nine years, mostly solo…and being constantly online searching for info and support…”Well, what experience have you had, official training?”
There are many times that those OFFICIALLY in charge of the patient does not have a complete picture, nor are they devoted to the whole person. In hospital and nursing home situations, staff have their sliver of responsiblity, and many aspects of the whole person are ignored.
Like I used to get out hot pads any time Mom’s legs felt cold, which were often. I brought in these little pads to the nursiing home. I could not do this. It was Heat Therapy. The doctor (who I think goes over only paper or online info) would have to Rx it, then the therapy would be applied by nurses on a schedule.
How about doing it when Mom’s legs FELT cold? But then, I am just chopped liver.
Carol, thank you for taking time to share your insights.
Our loved ones need more people like you and the author to advocate for their care.
After all, if we were in their shoes we’d want the same for ourselves.
Again, thank you for sharing.