Tag: family

How best to celebrate Christmas with a person with dementia

Christmas can be a stressful time for hosts and guests alike, and it’s more so for carers of people living with dementia.

It’s difficult to give general advice about how to get through the holiday season with as little fuss as possible because everyone is unique, and the various types and stages of dementia affect behaviour in different ways.

So I’m going to tell you a story of how one couple is getting through. Hopefully, their strategies will suggest things other families can do for a better Christmas.

Tom and Nola are not real people. Their portraits below are based on my experience working with people with dementia, and on conversations I’ve had with these people, their carers and service providers about how to cope at Christmas time.

Tailoring Christmas

Tom was diagnosed with dementia about three years ago.

“My memory is not so good now,” he says. But Nola, his wife and carer, says that he’s still sociable and enjoys food and company.

Full story of celebrating Christmas with Dementia at The Conversation

This Mom Lost 3 Children To HIV. She’s Making Sure No Other Mother Suffers Such A Devastating Loss

One by one, each of Connie’s three children died before her eyes in the 1980s from a relentless disease she had suspected was HIV, but didn’t have the “courage” at the time to find out.

Today, the grieving mother is working to make sure that no parent makes the same tragic decision.

In Zambia, where Connie lives, and other parts of the sub-Saharan Africa — HIV and AIDS still carry a pervasive stigma, a stigma so strong that it keeps people from even getting tested.

Once Connie’s husband fell ill, the two felt that they had no choice but to find out if they were infected. They both tested positive.

The pair enrolled in the Kanyama Health Center, a clinic that offers free life-saving drugs –- a decision that has kept Connie alive and has also helped her find a new purpose.

Connie now serves as an AIDS ambassador and peer counselor. She tests people in the comforts of their own homes and helps them navigate their treatment options.

Full story of HIV and loss at Huffington Post

Helping change the world’s view of Alzheimer’s

AgingCare.com, the online community of more than 6 million people caring for elderly loved ones, has released Fade to Blank: Life Inside Alzheimer’s—a compelling and unprecedented account that explores the human side of Alzheimer’s, as told by three families whose lives have been forever altered by this disease.

“We spent a great deal of time analyzing thousands of questions, answers and comments about Alzheimer’s on AgingCare.com,” said Joe Buckheit, Founder and President. “It became clear that even with all the information available, people wanted to know more about how this disease impacts real life.”

To answer their questions and provide further insights, Fade to Blank takes you inside the lives of three courageous families living with Alzheimer’s—from their views, in their words. It demonstrates that there is so much more to this devastating disease than its finality: more love, more hope, more humanity.

“No one has ever presented the ‘human’ side of Alzheimer’s in this way before,” said Anne-Marie Botek, author of Fade to Blank and editor-in-chief of AgingCare.com. “The unfiltered sentiments expressed by these incredible men and women have the power to truly transform the way Alzheimer’s is perceived.”

Full story of the world’s view on Alzheimer’s at The Sacramento Bee

Not Even 2, Girl With Juvenile Arthritis Struggles to Walk (VIDEO)

Toddler with Arthritis Struggles to WalkCampbell Pruden was only 19 months old, just beginning to talk, when she developed a limp and begged to be carried. The only way she could express her pain was to tell her parents, “It’s too tight.”

In 2011, the once energetic toddler was diagnosed and hospitalized with systemic juvenile idiopathic arthritis. At one point, she was taking eight daily medications. She was so afraid of the frequent steroid injections that she had to be put under anesthesia to keep her still enough for the procedure.

“In the beginning when there were all those unknowns, we knew we had to get to the bottom of it,” said her mother, Kim Pruden, a 35-year-old speech pathologist from Phoenix.

“But at the same time, we had to keep that poker face with her to give her the confidence that, ‘You are O.K. and you are going to be O.K.'”

The couple has their “breakdown” moments after Campbell goes to bed at night.

Full story of toddler with arthritis at ABC News

Photos courtesy of and copyright PhotoPin, http://photopin.com/

6 Things People Suffering From Chronic Pain Want Their Friends and Family to Know

Family and Friends to Know about Chronic PainBeing diagnosed with a condition that causes chronic pain can put a severe damper or even a hold on your life. You can’t do the things you enjoy, and in some cases, you can’t do the things other people see as simple. It’s not always easy to talk about either. You don’t want to be pitied, but at the same time you don’t want to be dismissed. And truth be told, sometimes you’re just so sick and tired of feeling horrible, that the last thing you want to do is talk about it at all. So even if your friend or loved one isn’t talking to you about it, here are some things you should know.

1. We don’t use it as an excuse:
While it may come to your mind, please realize that if we can’t attend something, and we tell you it’s because of our chronic pain, it’s the truth. We don’t use it to just get out of things. We wanted to go to that birthday party/concert too.

2. The pain is, well… chronic!
Unfortunately, this means we are in pain every day or at least nearly every day. Saying something like "Oh, that still bothers you from four years ago?" is not something we want to hear.

Full story of chronic pain at Huffington Post

Photos courtesy of and copyright PhotoPin, http://photopin.com/

Why Your Loved One’s Dementia Doesn’t Have to Be a Death Sentence for You, Too

Loving one with DementiaYou finally convince your spouse to go to the doctor with you. He’s only in his late 60s, but lately he’s been forgetting where his car keys are, losing words and getting lost when he goes out alone. You’ve been worried for a while, so you’re relieved your spouse is willing to see a professional.

The doctor, a neurologist, is a tall, distinguished researcher in his late 50s. He wears a long, starched white lab coat and sits behind his cluttered desk. He tells your husband to remember three things: a ball, a toothbrush and a pen. You memorize them, hoping your brain is still working. Then he asks your husband to subtract seven from 100 and continue subtracting sevens down to zero if he can. Your husband says,"93, 82." What? You sit up straighter and try not to blurt "93, 86." Your husband was a math major in high school and studied engineering in college. He taught you calculus, but all of a sudden he doesn’t know 93 minus seven is 86?

You start thinking about how you’ve been in denial about his dropping things and tripping around the house. Your husband can’t remember the three things he was supposed to remember 10 minutes ago. You’re glad you can, but your heart is beating too fast.

Full story of dementia care at Huffington Post

Photos courtesy of and copyright PhotoPin, http://photopin.com/

Traumatic brain injury impacts victim’s family, too

Traumatic Brain Injuries Impact on FamilyRachel Stovall doesn’t get mad – she gets organized.

When Stovall met Josh Wells in November 2010, the damage from his time with Alpha Company, 91st Engineer Battalion, 1st Cavalry Division, in Iraq from January 2004 to March 2005 had already been done, his brain forever changed by multiple IED blasts he sustained throughout his deployment. As she’s fallen in love with the wounded warrior, rather than getting upset when Wells forgets something, a symptom of his traumatic brain injury, the flight test engineer for Redstone Test Center has learned to be understanding of the challenges Wells will face his entire life.

“I know it’s something that’ll be a permanent part of our life, and it’ll be difficult on occasion, but it’s workable,” Stovall said. “You have to keep reminding yourself that it’s not the person’s fault they can’t remember things. There’s going to be issues, but if you keep remembering that there’s a cause to it, and it’s not just because he’s a guy, then it makes it a little more workable.”

It’s not just the Soldier or individual who experiences the lasting effects of a traumatic brain injury, but the family and friends that surround them as well, who have to learn to cope when their loved one is forgetful, can’t concentrate or find the right words, is anxious, depressed, irritable or prone to mood swings, all symptoms of a traumatic brain injury.

Full story of families impact of TBI at Redstone Rocket

Photos courtesy of and copyright PhotoPin, http://photopin.com/