Family members who provide care to relatives with dementia, but do not have formal training, frequently experience overwhelming stress that sometimes leads to breakdowns or depression, according to Penn State and Benjamin Rose Institute researchers. Interventions to alleviate this stress are not always effective, leaving caregivers isolated to deal with their stresses.
Today marks World Autism Day —a movement designed to spread awareness and vital information on the disorder that will touch 1 in 110 children’s lives this year.
And while doctors, advocacy groups and parents all have different opinions on the cause of this disorder or best treatment options for kids on the spectrum, experts universally agree that a key component in recovery is recognizing early signs of autism and starting therapies as soon as possible.
Last month, H.S. posted a comment about his father’s fear of Alzheimer’s, even refusal to use the word, and his concern that his parents are both ignoring a diagnosis.
If using the ‘A’ word creates an obstacle with your parents, then changing your language may help to open up lines of communication. If you say, “Dad can we talk about your memory loss?” you may get less resistance than saying, “The doctor said you have Alzheimer’s disease.
“Overall, the goal is not to agree on what to call ‘it’ but to be pro-active in receiving treatment and planning for the future. That being said, the following are important discussion topics to have with your parents and/or other family members. Keep in mind that you don’t need to tackle them all in one conversation.
April is Autism Awareness month. It’s also National Stress Relief Month. Caring for children with autism or adults with Alzheimer’s (or both!) is stressful, which can cause health problems for you the caregiver and for the loved one you are caring for. Read on for some tips from the Caregiving Club on caregiver stress reduction. And don’t forget to join SafetyNet’s Twitter contest that was designed with stress relief in mind – the prize is a $100 spa gift card!
Today is the start of National Stress Relief Month. And, although today is also April Fool’s Day – the stress that caregivers feel is not a joke.
Numerous studies, including one conducted by the National Alliance for Caregiving and Evercare, show that caregivers cite stress as their Number One health issue in caring for their loved one. In addition, one study from the Commonwealth Fund found that caregivers are twice as likely as the general population to develop multiple chronic illnesses sooner in life related to the increased stress of caregiving.
At a recent educational conference on dementia sponsored by the Connecticut Chapter of the Alzheimer’s Association, I was running late, passing packed rooms where sessions were just beginning.
“I’ll never get a seat,” I thought as I rounded the corner and entered the room where the “Sexuality and Dementia” program was getting under way. Interestingly, it was sparsely attended.
The first slide up on the screen was of an expressionless aged couple sitting side by side. In cartoon bubbles, he’s asking her “Whatever happened to our sexual relations?” and she’s responding, “I don’t know. I don’t even think we got a Christmas card from them this year.”
Here’s an article about three brothers with autism who have been helped by technology — one who uses computers, one who communicates via PowerPoint slides and one who communicates with an iPod Touch.
Cathy and Bob Strybel, of Orland Park, want to get their three sons out into the world.
“We want to help them find their way,” Cathy Strybel said. “If technology helps them, we’re going to support them the best we can.”
The Strybels have three autistic sons, Patrick, 15, a freshman at Andrew High School in Tinley Park; Danny, 13, a seventh-grader at Jerling Junior High in Orland Park; and Matt, 10, a fifth-grader at Liberty School in Orland Park.
All three boys followed different paths to the diagnosis of autism and Cathy Strybel said the widely accepted genetic markers of autism are not yet found in her boys. She said they would be considered high functioning on the spectrum.
Technology has certainly helped the Strybels.
Jeanne Swiatowiec has never felt the loneliness of an empty nest, although she has been widowed for 30 years and three of her children are married.
Swiatowiec, 78, still shares her home with her daughter, Beth, 43, who has Down syndrome. After so many years together, their daily routine is as well-rehearsed as a ballet. Swiatowiec cooks dinner, while her daughter sets the table. Swiatowiec washes the laundry, and her daughter dries and folds it.
“All my friends say I’m lucky to have her for company,” says Swiatowiec, of Chicago. “It’s never lonesome around the house.”
Mothers such as Swiatowiec were “pioneers” — the first generation of families to insist on raising their children at home rather than in institutions, says Marsha Seltzer, director of the University of Wisconsin-Madison’s Waisman Center, which focuses on developmental disabilities.
Elderly people with failing memories often keep driving, but a study of Alzheimer’s patients suggests the risk of getting lost — even on familiar streets — may be greater than once thought.
Even with early dementia, there may be no safe period behind the wheel because the disease is unpredictable, said Linda Hunt, an associate professor in the School of Occupational Therapy at Pacific University, Oregon, and author of a new study.
“Alzheimer’s disease affects memory and navigational skills. These impairments may lead to getting lost, which is a life-threatening problem,” Hunt said. “Family members and friends of individuals with dementia need to recognize these impairments as serious threats to safety for anyone who has dementia.
“It is estimated that 30 to 45 percent of Alzheimer’s patients continue to drive after diagnosis.
In this post from the CoHealth Blog, the blogger introduces Principle Number 9 of caring for someone with dementia. It deals with one of the hardest aspects of dementia caregiving – difficult behavior. Don’t take it personally; often that language or behavior is the dementia, not the person you’ve known and loved. Read on.
Principles of Behavior Management with Dementia – Don’t Take it Personally
It is easy to misunderstand or misinterpret the actions of someone with dementia, to wonder why he is saying hurtful things, or to feel offended when his interpersonal behavior and communications are so uncharacteristic for him. Whether in a residential setting or a nursing home, the effects of dementia can produce unpredictable and often offensive emotions, behaviors, and attitudes. Regardless of how long we may have known, loved, and cared for someone, there will be occasions when a coarse, crude comment, a striking out with a clenched fist, or a distasteful act like spitting is directed at the caregiver.
The mother of an autistic adult featured in this Salt Lake Tribune Article says she knows her son best. She and other parents of adult disabled children want their voices heard when decisions are being made about where their children should live.
Parents of the disabled want a say
In one group home, Philip Paulsen was left unattended and was seriously burned in a cooking accident. While playing with water — a habit when he’s anxious — the severely autistic adult caused $5,000 in damage to a supervised apartment. He was evicted for assaulting a caregiver.
As his mother, 73-year-old Mary Paulsen rounds the corner to old age, she feels the “security, consistency and supervision” her son needs can only be found at the state-run Utah Developmental Center in American Fork.
But with a movement to keep the disabled out of institutions underway for decades, Paulsen and other parents feel shut out of decisions about where their loved ones will live. They’re now asking lawmakers to endorse legislation that would make it easier for parents to institutionalize their mentally disabled children.