Category Archives: Awareness & Activism

February 2, 2013 · 10:28 am

When friends develop Alzheimer’s

When we think of Alzheimer’s, most of think in terms of the impact on family. We think about family members being caregivers. But what about the friends of those with Alzheimer’s? Can simple human companionship still be relevant in the Alzheimer’s world?

I read this interesting and touching piece in the New York Times this week, about a group of women who have organized visits to a member of their circle of friends who has early-onset Alzheimer’s. These ladies gather on a regular basis for outings and chatting and noticed a difference in Sunny, who became unable to organize events for the group and had difficulty communicating. They talked to her family and when they found out the grim diagnosis, they did what good friends do: offered support.

So now the ladies arrange short, stress-free visits centered around themes their afflicted friend can still relate to. For now, these visits are happy and uplifting. The friends know that one day, these visits may not be possible any more, but they are focused on improving Sunny’s quality of life in the present. Her family is grateful for the break from caregiving and for the emotional boost it gives her.

Of course, not everyone has a circle of amazing friends like this, but they are telling their story in hopes of inspiring others. It’s not just family members that are impacted by an Alzheimer’s diagnosis. Everyone in that person’s life feels the pain yet can make a difference.

Hopefully, we can count on good friends like Sunny has, if we are faced with a dementia diagnosis.

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January 29, 2013 · 7:19 pm

A dozen minutes in the world of Alzheimer’s

ABC did a segment about a program called the Virtual Dementia Tour. Of course, we can never truly understand what each individual with Alzheimer’s experiences, but the simulation attempts to address some of the visual and auditory issues commonly experienced by Alzheimer’s patients. Subjects are fitted with goggles that impair their vision and headphones that play sounds often described by Alzheimer’s sufferers.

During the segment, the reporter and a man whose mother has Alzheimer’s undergo the experiment. Both struggle mightily with trying to complete the simplest of tasks. The eerie part was how much the man resembled his own mother in the confusion and disorientation he was exhibiting.

The unique experience is supposed to give the participant a better understanding and more empathy when they interact with people with Alzheimer’s. I think it is a valuable tool and is valuable to all dementia caregivers, whether they are professional or family caregivers.

Unfortunately, for our loved ones with dementia, they are trapped in this distorted world all of the time.

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January 23, 2013 · 4:42 pm

Pauline Philips: Advocate and victim of Alzheimer’s

Pauline Phillips, aka Abigail van Buren, was better known as “Dear Abby” by her vast news advice column readership. She dispensed friendly but firm advice to thousands of questions on a variety of daily life topics over the years. She also was not afraid to give her opinion on hot-button topics like women’s rights, AIDS and gay rights. But for those of us touched by Alzheimer’s, her early advocacy helped this terrible disease get the public attention it deserves.

The sad and twisted irony is that Ms. Phillips would end up succumbing to Alzheimer’s disease herself. She lived for a decade with the disease, before passing away at age 94 in January 2013.

The Alzheimer’s Association has posted a lovely tribute that explains how her role as Dear Abby helped the public understand more about Alzheimer’s disease. While it can be easy to scoff or be dismissive of the power of pop culture figures and advice gurus, their messages can be powerful.

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January 21, 2013 · 8:04 am

Day of service for dementia

Today, in addition to the presidential inauguration and the federal Martin Luther King Jr. holiday, is designated as a day of service. In the spirit of MLK, everyone is encouraged to go out into their communities and help those in need.

Participating in events like this can be difficult if you are a full-time family caregiver. Certainly when you are caring for someone with dementia, they cannot be left alone for even a minute. And while those in the early stages of Alzheimer’s might be comfortable attending a day of service event, others might feel overwhelmed. Financially, things may be difficult as well, so financial donations may be out of the question.

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My feeling is that as caregivers, we are providing a day of service EVERY day. So don’t feel guilty if you can’t actively participate today.

There are volunteer opportunities with the major dementia organizations. There are many more volunteer opportunities on a local level. Do what you can. Promote the needs of the Alzheimer’s and dementia communities as best as you can.

The most important thing is to have a voice for those who can no longer express themselves.

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January 16, 2013 · 7:36 pm

Patient navigators: Assisting caregivers through the medical maze

I wish I had known that patient navigators existed when my father began his journey into the world of hospitals and nursing homes. I think it would have been worth the fee to have someone who had the knowledge and the experience in handling hospitals, nursing homes and billing issues.

With my mom, I felt I had better control over the situation. The hospital’s discharge planner gave me literature on the skilled nursing options in the area, and encouraged me to visit each of them before choosing one. I did and picked the facility with the best rehab services, because that was Mom’s most pressing need at the moment, her need to learn how to walk again. While the facility I chose did come with its own host of issues (that are pretty common in these places, unfortunately), the rehab was excellent and Mom left the facility fully walking on her own.

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But with Dad, it seemed like his healthcare decisions were made by strangers. It didn’t help that often he was far from home when these decisions had to be made. Often, Mom and I felt like it was easier to go along with whatever the hospital recommended, because we were not familiar with the city Dad was in and the care options back at home were not sufficient for his needs. But it was when Dad first entered the nursing home world that we seemed the most helpless. I received a call just before Christmas 2010 with Mom telling me that Dad had been moved to Roswell. I assumed she meant to a hospital there because he was sick again, but no, it was an assisted living facility with a dementia wing.

I don’t know the details but Mom swears they moved Dad from the temporary rehab center he was in without her permission. I’ve asked people in hospital administration and they claim that is impossible, that payment and paperwork would have to be conducted up front. I believe this is probably the case, but see how a patient navigator could have been of great use to my mom in this situation?

She would not have been as overwhelmed and the patient navigator could have clearly explained what our options were. This is still just a small industry so I’m sure these services are not available in all areas but it is good to keep in mind if you are a caregiver facing major medical decisions regarding your loved one.

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January 14, 2013 · 8:21 pm

The skyrocketing costs of long-term adult care

For any caregiver or family member who have had to place a loved one with Alzheimer’s in a long-term care facility, the fact that this kind of care costs a lot of money comes as no surprise. But I’m not sure if the general public understands just how much out-of-pocket expenses there are, and how quickly your family’s savings can drain away to provide the needed care.

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This Met Life survey sums up the 2012 average costs for nursing homes, assisted living facilities, adult day services and home care costs. The numbers are brutal. For Alzheimer’s patients in the early to middle stages of the disease, an assisted living facility might be appropriate. The average annual cost was $42,600. As the disease progresses, often a skilled nursing facility will become necessary. The average annual nursing home cost was $81,030 for a semi-private room. For Alzheimer’s patients who may be combative with other patients, a private room cost $90,520 annually. (These costs are for the U.S.)

So a family with a loved one who needs long-term residential care may need to foot a bill that comes to almost $100,000 for a year’s worth of care. I don’t believe the above rates include medications, which are billed separately (at least in my dad’s case, they were.) I had an aunt on my mom’s side who just passed away this past week. She had Alzheimer’s and had been in a nursing home for several years. The monthly cost was over $7,000 and this was a facility in a tiny, rural Southern town, not a fancy big city place.

I wonder how many people mistakenly believe that Medicare covers these costs. Sadly, I think it’s probably a pretty high number. Medicare is pretty good about covering the high cost of hospital care and surgical procedures that often become necessary as one grows older. But the lack of provisions for dementia residential care, in particular, is a heartbreaker and financially devastating for so many families.

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January 11, 2013 · 6:50 pm

25 years of Alzheimer’s advocacy in America

The Alzheimer’s Association Advocacy Forum will host its 25th national conference this year in Washington, D.C. from April 22-24. Check out this timeline of Alzheimer’s advocacy over the last quarter of a century. So many people have come together and broadened awareness of this terrible disease over the last 25 years. Certainly I know most advocates would hope we would be further along with treatment options or even, daresay, a cure, but awareness has grown greatly. Unfortunately, as Alzheimer’s cases have grown in numbers, the U.S. and the world have had to take notice and take action.

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I hope to get to attend this year. For those on a budget, registration fees are being waived in honor of the 25th anniversary. You can find out more about the event and the agenda details on the registration page.

Sometimes, caregivers and family members can feel so alone, so isolated in their family’s struggle with Alzheimer’s. Meeting others who share similar experiences can be a moving, yet rewarding experience.

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January 9, 2013 · 8:23 pm

Celebrities raising Alzheimer’s awareness

Comedian and actor Seth Rogen is an Alzheimer’s Champion. He started a fundraising event called “Hilarity for Charity” and he has raised over $30,000 so far. He’s auctioning off a star-autographed ukulele and the bidding ends January 11th. Find out more about his fundraising event at CrowdRise.

When stars get involved in causes, it can raise awareness greatly. With Alzheimer’s and dementia so common nowadays, I hope more celebrities and notables will step up and join the fight.

As Seth Rogen says on his fundraising page about Alzheimer’s: “It’s robbing people of their ability to be humans.”

I couldn’t agree more.

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