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Alzheimer’s and Dementia Blogs: Ten We Found Useful

My sister and I recently found ourselves taking a crash course in Alzheimer’s as our 75-year-old mother’s forgetfulness escalated to a more clinical level. The wake-up call came from the California Highway Patrol, which found our mother parked by the side of the highway in Santa Rosa, 200 miles north of her home. She had no idea where she was.

Like millions of others, we were suddenly thrown into a complicated caregiving challenge, and needed  lots of information, fast. Fortunately, online resources about Alzheimer’s and dementia are extensive, including some excellent blogs. Here are ten worth checking out:

•    Alzheimer’s Notes provides great educational information and caregiving advice, all well-categorized.

•    The Alzheimer’s Association has wide-ranging message boards, including a popular Caregivers Forum that covers the full range—from personal stories to advice. As someone said recently on the forum, you have to have a sense of humor to care for someone with dementia.

•    The Tangled Neuron gathers wide-ranging research reports and articles on memory issues and decodes them for caregivers and other non-medical readers. Excellent links to other sites.

•    The Dementia Caregiver’s Toolbox is the real deal—plenty of great, real-world advice, and focused almost exclusively on professional and family caregiving. For example, a recent post provided tips on dealing  with “dementia elopement” (great phrase) or wandering.

•    The Caregiver’s Beacon is a very popular blog that provides a lot of great resources for Alzheimer’s and dementia caregivers—plus extensive links to other blogs. A bit cluttered, but a good place to start your search for information.

•    Dementia Blues is a sporadic but very well-written, highly personal blog from writer Paula Martinac. Its subtitle—“Funny/Sad Ruminations by a Baby Boomer On Having Two Parents with Dementia” pretty much says it all.

•    HealthTalk’s Caregiver Notes offers a personal take on caregiving, with good information, and intra-site content from within HealthTalk.

•    Minding Our Elders says that its mission is “to shine a light on the isolation often felt by caregivers and seniors and to give them a voice.” Clear posts from well-informed author Carol Bradley Bursack and lots of links to other resources (including various associations and publications) make this a great blog for caregivers.

•    Spiritual Caregiving adds a spiritual perspective to the challenges of family caregiving for loved ones with incurable memory loss and dementia. 

•    At OurAlzheimers.com—part of Health Central—you’ll find shared posts from caregivers and people living with Alzheimer’s and vascular dementia.

As always, one blog tends to lead to another, then another. After some exploring, you’ll have a wide-ranging collection of resources—some informational, others more personal. Caregiving for a dementia-afflicted parent, spouse, or other relative is difficult and sometimes downright bizarre. Reading about the experiences of others puts it in perspective and provides helpful advice.

Stona Fitch
carespace.com

An Interview With Nell Casey

A few days ago we reviewed here An Uncertain Inheritance: Writers on Caring for Family, a collection of essays edited by Nell Casey. The same day a dear friend who is taking care of her mom called me to say that I should download WNYC radio’s Leonard Lopate show on caregiving. On his show, from December 12th, Lennie – as we affectionately call him here in New York -- talked with author Nell Casey along with Andrew Solomon and Susan Lehman, contributors to the book.

The show is called “The Rewards and Challenges of Being a Caregiver,” and is a moving and fascinating discussion of caregiving, from the impact of those returning from Iraq in need of long-term care, to opting out of the nursing home system for an aging parent, to the deep financial chaos caregiving can cause.  There is also talk about the rewards of taking care of someone you love through a serious illness, or as they approach death.

So the discussion of caregiving as a concept and caregivers as a major demographic gains momentum every day. One of the more auspicious comments author Nell Casey makes is that, at some point, we will all become caregivers. Let me know what you think of the broadcast.

Thomas Falconer
Carespace.com 

Taking An Elder Parent's Car Keys Away: Part II

Two weeks ago I posted about my friend  David’s decision to take the car keys away from his 85-year old Dad, Harold. After a frightening experience with Harold behind the wheel, David spoke frankly with his Dad. Harold admitted, with surprising candor, to being confused and disoriented often while driving.

David called his two sisters and convened a family meeting. He began by describing the difficulties their Dad was having with his driving. Harold listened quietly until David finished, and then produced an unpaid parking ticket – seven weeks ago their Dad had driven the wrong way up a one way street.

David and his sisters, and Harold, knew that the jig was up. And in an attempt to soften the blow, or delay the inevitable, they decided together that, for the next two months, they would find alternatives for Harold – jitneys, cabs, community bus services for the elderly, that sort of thing. And although Harold was uneasy asking for help, they also discussed enlisting some of Harold’s friends to take him places.

So David and his sisters patched together a fairly solid transportation plan for their Dad. They even arranged for deliveries of groceries and prescriptions.

But for Harold, this was a life-changing event. He’d been driving all his life – driving around provided independence, and was proof that he could still take care of himself. And, while the temporary transportation plan pretty much takes care of all of Harold’s needs, he’s still left with lots of time to feel isolated and alone.

For the time being, the car is still in Harold’s garage, although David has the keys. Harold is even more morose than usual. As soon as I hear how they are all adjusting, I’ll let you know. In the meantime, let me know if you have any advice to pass along to David.

Ron Slate
Carespace.com

Taking An Elder Parent's Car Keys Away: Part I

My friend David told me that he finally made the decision to take the car keys away from his 85-year old father, Harold. But he hasn’t yet actually acted on it. “Dad’s had three close scrapes since Thanksgiving,” David said. “It isn’t that his vision is especially bad.  But his reflexes just aren’t sharp enough, and sometimes he forgets where he is. He becomes anxious and confused,  which  interferes with his judgment. ” Harold was diagnosed with Aphasia in late 2006. A few  months ago David realized, “Hey, I’m becoming a full-time worrier – because caring for  my dad  is becoming a full-time job.”

Data tracked by the National Highway Traffic Safety Administration shows that drivers over 75 years old have more accidents per year than any segment other than teenagers. But teens grow in experience and skill -- the capabilities of seniors only erode. This physical and mental degeneration may clash with an elder’s sense of independence and identity, and when that happens, the caregiver may find it hard to manage the emotional side of the equation.

David initially approached the  problem by having his Dad’s vision and hearing tested. Harold’s nighttime vision was compromised, but there didn’t seem to be any daytime issues, and his peripheral vision was judged to be fair. His glasses prescription was up-to-date, and the hearing aid Harold had installed in 2005 was adequate. Harold had been complaining regularly about the effects of  a longtime neck injury (an impinged nerve), and David decided that  he’d check  on that later. 

Next came a road test, when David’s Dad took the wheel and drove the two of them to the local mall to shop for a birthday gift for David’s daughter. Harold didn’t miss a turn, keep his speed at a regular pace, and seemed to be aware of pedestrians at intersections.

“You’ve got to listen carefully and not just rely on what you think is happening,” David said. His Dad responded that “sometimes cars and people just seem to come out of nowhere.” Just as they approached the  mall, Harold slowed down, other drivers started honking, so, out of confusion  he pulled into a gas station. “He stopped the car and was clutching the steering wheel. He didn’t look at me. He told me that he  knew we  were at the mall. But he couldn’t remember why we were there.”

David realized that his Dad had just acknowledged the  growing and dangerous level of confusion he experienced while driving. He also told David that he had been driving less because of these experiences. 

David still hesitated to admit that his Dad’s driving was a serious safety concern. Then last week, his cell phone  rang. It was Harold, saying, “I’m at a rest area just off the highway near the Cape Cod canal.  Would you talk to the state trooper?” Harold had driven some 40 miles east of his intended destination, which David guessed was the supermarket. It was time to have the talk, take the  keys, and make other arrangements for Harold to get around.

David is going to tell me how that dialog goes, and when he does, I’ll pass the story on to you.

Ron Slate
Carespace.com