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‘My father could act normal when he wanted to…’

Writer Jacqueline Marcell writes a piece on caring for her Alzheimer’s-afflicted father and what caregivers of Alzheimer’s patients should know.

JacquelineFor eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.”

When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was heart-breaking, as one minute he’d be my loving dad and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house the next. I took him to several doctors, only to be flabbergasted when he could act completely normal when he needed to.

Finally I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and P.E.T. scans. After ruling out numerous reversible forms of dementia, such as a B-12 and thyroid deficiency, and evaluating their medications, I was stunned by the diagnosis of Stage One Alzheimer’s in both of my parents – something all their other doctors missed entirely.

What I’d been coping with was the beginning of Alzheimer’s, which starts very intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own engrained bad behavior of a lifetime of screaming and yelling to get his way, but that it was coming out intermittently in inconsistent spurts of irrationality. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated), and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

Alzheimer’s makes up 60-80 per cent of all dementias and there’s no stopping the progression, nor is there yet a cure. However, if identified early there are four FDA medications (Aricept, Exelon, Razadyne and Namenda–and many more in clinical trials) that in most people can mask dementia symptoms and keep the patient in the early independent stage longer.

Once my parents were properly treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s aggression, I was able to optimize fluid and nutrition with much less resistance. I was also able to manage the rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I also learned to just go-with-the-flow and let hurtful comments roll off. And most importantly, I was able to get my father to accept two wonderful live-in caregivers. Then with the tremendous benefit of adult day health care five days a week for my parents and a support group for me, everything finally started to fall into place.

Alzheimer’s disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a ‘normal’ part of ageing. Since one out of eight is afflicted with Alzheimer’s by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and help educate patients and families so everyone can save time, money–and a fortune in Kleenex!

Jacqueline Marcell is the author of Elder Rage, a Book-of-the-Month Club selection receiving 400+ 5-Star Amazon reviews, 50+ endorsements (www.ElderRage.com/review.asp), required reading at numerous universities and considered for a film. Read an excerpt from the book here www.ElderRage.com/samplechapter.asp. She is also an international speaker on Alzheimer’s as well as breast cancer, which she survived after caring for her parents. She also speaks on caregiver stress and illness, and Alzheimer’s being termed ‘Type 3 Diabetes’, the Obesity Epidemic and Sugar Addiction.

(Pictures courtesy Jacqueline Marcell, mashomecare.com. Featured image used for representational purpose only)

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Why dementia awareness matters

It strikes elders and its progress is often silent. But one can live a quality life even with the disease.
by Echoing Healthy Ageing, Mumbai

September 21 is World Alzheimer’s day. Alzheimer’s is a type of dementia. There are about 3.7 million people in India living with Alzheimer’s or other type of dementias. While there are over 100 different types of dementia. Alzheimer’s disease is the most common type of dementia.

‘Dementia’ is a term that the doctor uses when someone has a number of problems with thinking and remembering. A sufferer of dementia typically faces problems that interfere with his or her ability to do things that they used to be able to manage in the past. Dementia mainly affects people over the age of 65 and the likelihood of the disease occurring increases with age.

Dealing with dementiaThe disease is incurable and progressive. A person with dementia slowly loses the ability to do things. The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to around 10 years. The person who has it cannot control it.

Dementia can have a devastating effect on the person who has it, and on their family. Because it attacks the brain, it slowly leaves people lacking the ability to understand the world around them in the way they used to be able to. This is very difficult for people to properly understand and so the person with dementia is continuously asked to do things that they either struggle with, or that their brain can no longer do. This obviously leads to frustration, anger and often depression. A person with dementia will often retreat into themselves, or become enraged and inconsolable, until just a shell of the original person can be seen. Like a person drowning in deep water, the person with dementia will get tired and either sink under or scream and shout. These responses are usually thought to just be symptoms of Dementia, but actually it is people’s response to being interacted with in a way that does not take their brain damage properly into account.

How does one deal with it?

While there is no medicine, dementia-sensitive care can make an enormous difference. Dementia doesn’t have to be distressing – the person with dementia can have a fantastic life, and their family can have great relationships with them. It is crucial to help the person experiencing dementia to maintain control over as many areas of their life as possible, and encourage them to maximise their remaining abiilities. It is important to remember that the person with dementia has not lost their reason, instead they have lost the ability to process information, which is what we keep asking them to do.

All is not lost for a person struck by dementia – it is possible to lead a good quality life provided sufficient and appropriate care is provided to the person, and his or her condition and behaviour is seen in the context of the disorder. We at EHA have organised a seminar, ‘Dementia Sense’, which will provide insights on persons living with dementia and provide guidelines to create an environment that promotes well being for people living with dementia. (See details below). The approach to the disease cannot be a neutral, common sense one – when we use common sense around dementia, our strategies fail because we are not understanding the world from the person with dementia.

About the seminar:

The ‘Dementia Sense’ seminar will take place from September 19 to 21, 2013 and will give practical solutions to how to interact with one of the fastest growing epidemics in the world. Call Echoing Healthy Aging on 91586 56665 for venue details. Registration cost is Rs 499. Log on to www.echoinghealthyageing.com for more information. The speaker for the seminar is Shanta Gyanchand, a specialist dementia care wellbeing consultant and a UK-trained psychotherapist.

The Metrognome supports Alzheimer’s Awareness Month all through September 2013. Tell us about your organisation’s/individual efforts to fight this deadly disease and we will feature your story.

(Pictures courtesy EHA, www.thehindu.com)

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