For anyone who has faced the challenge of caring for an elderly parent, family member, or loved one that has been stricken with Alzheimer’s disease or dementia, coping with the emotional and physical exhaustion of the experience can be overwhelming. Frustration, anger, and impatience can take its toll on even the most dedicated caregiver.
Jacqueline Marcell is the author of the book Elder Rage, or Take My Father... Please! How to Survive Caring For Aging Parents
, and an outspoken advocate for Alzheimer’s disease education and awareness. Jacqueline endured some of the most emotionally and physically trying hardships imaginable, but succeeded in solving her seemingly endless crisis with patience and education. As a result, she has used her experience to help Alzheimer’s disease and dementia caregivers to realize that to succeed in the role of caregiver, you need to focus on the life and vitality that remains in your loved one, and not dwell on the effects of the disease.
In a recent interview with AlzheimerSupport.com, Jacqueline shared some of her caregiving experiences, and lent some valuable advice for those concerned their loved one may have, or is currently suffering from dementia or Alzheimer’s disease.
Don’t Ignore the Warning Signs
One of the biggest problems Jacqueline finds among family caregivers is a reluctance to understand or believe something is wrong with their loved one. According to Marcell, it is very important not to ignore the warning signs that may indicate the onset of Alzheimer’s disease or dementia.
“People often don’t understand the warning signs [of dementia], you can’t ignore them. But unfortunately denial is often the biggest factor,” she said.
One incident that lead Jacqueline to suspect a problem in her father was during a routine drive through town. Jacqueline’s father had lived in the area for 32 years, yet found himself lost and confused while at the wheel, and could not gain his bearings despite being a long time resident of the community. Jacqueline advises concerned family members to take note of events like this and write them down. One tip she said, is to carry a spiral notebook with you, and write down the behaviors or actions that seem odd or out of place. This information will help a physician to make an accurate evaluation and diagnosis.
There are many types of dementia and Alzheimer’s is just one form. Scientists have yet to discover a cure or stop the progression of the condition. Alzheimer’s is generally broken down into three stages of development. Stage one lasts 2-4 years and is characterized by mild cognitive decline. Stage two is moderate dementia that lasts 2-10 years and typically requires fulltime care of the patient. Stage 3 is severe dementia and lasts 1-3 years.
Ten warning signs of Alzheimer’s and dementia:
Recent memory loss that affects job skills
Difficulty performing familiar tasks
Problems with language
Disorientation of time and place
Poor or decreased judgment
Problems with abstract thinking
Changes in mood or behavior
Changes in personality
Loss of initiative
“Everyone should know the warning signs of dementia and the importance of seeking help sooner than later,” Marcell said.
Statistically, families (and many doctors who are not dementia specialists) wait 4 years before suspecting a patient may have dementia or Alzheimer’s. This is due to the fact that families often ignore early warning signs, or incorrectly assume that these intermittent or odd behaviors are just a normal part of aging.
With early detection and medications such as Aricept, Exelon and Reminyl, dementia symptoms might be masked and delayed by 2-4 years, keeping a loved one in the mild and intermittent stage one of Alzheimer’s, longer.
“Seeking help early can save families a lot of heartache and money, and save our society the burden of caring for so many elders who decline sooner than need be. It's really very simple: When your loved one does something that strikes you as illogical or irrational--it is! You don't need to be a Ph.D. to know something is wrong, you need an M.D. who can diagnose and treat it properly,” Marcell said.
Finding the proper medical assistance can be a major challenge when caring for someone who has dementia. Jacqueline went through countless physicians before finding a specialist who could make an accurate diagnosis, and provide the best treatment for her parents. During her experience, Jacqueline found that far too many general practitioners all too often dismissed the symptoms of dementia, and feels it is important to find a geriatric dementia specialist who can accurately uncover symptoms and make a diagnosis. If you have trouble finding a specialist, Jacqueline recommends contacting the Alzheimer’s Association (800-272-3900 – www.alz.org) for help. They were able to refer her to qualified specialist, who prescribed medication and helped improve her father’s cognitive ability, as well as treated his symptoms of aggression and depression.
An unfortunate reality that exists among caregivers and their ailing patients is elder abuse. The anger and frustration that can build between a caregiver and patient can even develop, among some, into emotional and physical attacks.
“75% of dementia patients are being cared for at home, and sadly, elder abuse is reaching epidemic proportions because families are so unprepared for the frustrations of caring for their elders, who are living longer than ever,” she said.
According to Jacqueline, elder abuse can arise from feelings of suspicion, jealousy, and loss of personal control. Often caregivers must put restrictions upon patients in order to insure the patient’s safety, but a patient may not give up those freedoms so willingly. Jacqueline’s father for example, would spit, curse, and even choke his daughter in anger as he tried to hold onto his independence.
“My father’s rage was at getting old. He was trying to hold onto control but was losing it, and became extremely frustrated,” Marcell said.
It is important then for caregivers to find support groups and a community resource to help them and their patients cope with the disease, and to become well educated about the condition. Jaqueline believes that with education people can understand how to properly mange the challenge of caregiving and reduce elder abuse. She advises that the right team and the right support group can help people cope emotionally, as well as give caregivers and patients a place to go when times get rough. Jacqueline overcame her frustration by joining a support group, and getting both her parents involved in daily, social activities at an adult day health care facility, which she says completely turned their lives around.
For family caregivers, Jacqueline says it is important not to feel overburdened with caring for a parent or loved one. She knew her parents would never want her to be overwhelmed with the burden of their care. To overcome these feelings Jacqueline recommends caregivers focus on the positive things your loved one has done for you, to help bring back compassion and prevent you from stepping over the line in times of frustration.
“People have to try not to focus on the demise [of the loved one]. Rather you should focus on the life that’s there, and embrace the life that’s there no matter what stage of the disease they are in. And sometimes you have to drop what you are doing and be with them, and cement that time with them,” she said.
For more information about Jacqueline Marcell and her book Elder Rage
, please visit her website at www.elderrage.com.