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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 

Caring From Afar

I heard my wife chatting on the phone with her 85-year-old mom Edythe this morning, her regular morning call to her mom in Florida from our home in New York.  They were talking about Edythe’s new hearing aids, or at least attempting to do so.

First I heard, in normal voice, “Did you get the new hearing aids?” Then I heard, a little louder, “the new hearing aids, did you get the new hearing aids?” Then shouting at the top of her lungs, “DID YOU GET THE NEW HEARING AIDS?”

Guess not.

We all had a laugh about this --  my mother-in-law  often laughs at her inability to hear well. And we feel lucky that, for now at least, this is her only real problem.  My wife and her sister are constantly on the phone with their mom making sure she’s ok, helping her deal with life’s more complex problems like health insurance claims and  such. And they travel down to see her often too.
But taking care of someone from afar can be extremely stressful. Before my father-in-law died two years ago, my wife and her sister were flying back and forth constantly, on the phone many times a day. Trying to get doctors to call them back, prescriptions delivered, all of this was time-consuming, frustrating, and deeply burdensome.

CNN.com recently posted an article on the issue of caring from afar that has some good advice. I’d love to hear your comments about this issue as well.

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

Book Review: Dementia Caregivers Share Their Stories

“Dementia Caregivers Share Their Stories” by Lynda Markut and Anatole Crane (2005, Vanderbilt University Press) charts the inevitable progression of dementia from initial diagnosis to difficult end-of-life decisions. But this honest (sometimes brutally so) guide stands out from the growing body of literature about dementia by focusing on the caregiver, not the progression of the disease. It takes an unflinching look at the critical role caregivers play in addressing this increasingly critical health issue.

While the recent film Away from Her captures the poignancy of the decline of dementia, this book shows the messy, daunting, and often surreal challenges of dementia caregiving. We hear unscripted comments from spouses, children, and others who care for people afflicted with Alzheimer’s and other types of dementia—every day, often alone.

The dozens of first-person insights and stories included in the book came from an Alzheimer’s/dementia support group in Woodstock, Illinois. So they carry a powerful immediacy and openness. The book’s subtitle is telling and accurate: “A Support Group in a Book.” Given the lonely and isolating work of caregiving, it’s a much-needed approach.

Through these stories, we learn insights and strategies borne from experience and necessity. How can you deal with the inherent stress, sadness, and depression triggered by dealing with dementia every day? How do you know when the time is right to make the hard choice to transition a demented loved one into a care facility? How do you say goodbye to someone who has been gone for years?

The answers are delivered with a refreshing Midwestern directness, free from self-pity. You finish the book convinced that caregivers are the true unsung heroes in America today.

And there is a fast-growing need for family caregivers. A 2005 study by The Lancet estimates the total number of people with dementia today at more than 24 million, rising to 81 million by 2040. There is a new case of dementia diagnosed every seven seconds.

Are we ready? “Dementia Caregivers  Share Their Stories” shows how ordinary people can rise to the challenges of caregiving—with plenty of help, shared advice, and support.

Stona Fitch
Carespace.com

Medical Clinics in Convenience Stores

Would you really want to put your health in the hands of convenience stores selling cigarettes, candy, and magazines? This question hovers behind the recent controversy over whether Boston-area retail convenience stores should be allowed to offer limited healthcare clinics (e.g., CVS’s Minute Clinics) to handle sore throats, ear infections, and the like.

Boston Mayor Thomas Menino weighed in against the move, the Massachusetts Public Health Council seems to be for it, and much of the discussion is relentlessly focused on potential quality of care and safety issues. Let’s face it -- the market (and plenty of regulation – this is Massachusetts, after all) will quickly address quality of care. For caregivers, access to care is the more pertinent issue—and the real benefit for us.

Enabling low-priority issues to be handled at these convenient, walk-in clinics will free up the schedules of swamped General Practitioners (GP’s) to handle more complex, challenging, chronic medical conditions—the kind that caregivers struggle to get for their loved ones every day. As caregivers, we spend a fair amount of time in waiting rooms and hospital lobbies. Removing even a little of the considerable burden from GPs would help streamline access to specialized attention when it’s needed.

Plus, these clinics will give caregivers fast, as-needed access to routine diagnostic tests (throat cultures, etc.) when the problem is less serious. In short, getting your Alzheimer’s-afflicted mother’s blood pressure taken in 10 minutes at a convenience store beats waiting around the lobby of your doctor’s office for an hour or two.

With the right approvals, monitoring, and expectations, these new types of clinics seem to bring a simple and sensible addition to the healthcare mix. If convenience stores manage to make money offering these services, more power to them. If only our healthcare system was so responsive to the needs of the marketplace.

Should we rely on convenience-store clinics as frontline identifiers of more serious conditions, such as diabetes or cancer? Of course not. But can caregivers look to these walk-in clinics as a new, convenient resource? Absolutely.

Stona Fitch
carespace.com