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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January 7, 2013 · 7:19 pm

If we had kept Dad at home

The Alzheimer’s Prevention Initiative is seeking those willing to talk about why they signed up with the registry. As I indicated that I would be wiling to speak out for the cause, I started thinking about my reasons for being an Alzheimer’s awareness advocate. The obvious reason is because of my father’s battle with the disease.

But I also hope to encourage others to not make the same mistakes I made. #1: The rare visits. If I could go back in time, I would have visited more, both when Dad was still at home and when he moved into the nursing home. #2: Being uncomfortable around Dad’s unpredictable behavior. If I had it to do over again, I would tell my former self to get over it and embrace the now, instead of regretting that Alzheimer’s had stolen much of Dad’s former self.

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It got me to thinking about one aspect of Dad’s care that I never really thought about before too much. Wonder if Mom and I had somehow managed to keep Dad at home, instead of him being transferred to the nursing home for the last year of his life? I most likely would have had to quit my job, but hey, a year and a half later, I quit my job to take care of Mom. Maybe somehow with home health care, we could have managed Dad at home, even as his Alzheimer’s progressed.

This is one aspect of Dad’s care that I don’t regret. I think the stress of trying to care for Dad at home could have broken our family apart. And while I was not fond of the medications Dad received at the nursing home that turned him into a zombie, at home, he may have refused to take any medications, and who knows if those angry outbursts would have become more violent and dangerous?

I know there are many families who do keep their loved ones with Alzheimer’s at home and care for them until they pass away. I admire and respect that choice 100 percent. I think family caregivers need to receive more financial and community support. But on the other hand, I also respect the choice of placing your loved one in a good facility, where they can receive the supervised care they need.

One suggestion I would make

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January 4, 2013 · 6:56 pm

The Memories Project on its one year anniversary

I can’t believe that I have been blogging for The Memories Project for one whole year now. I stuck to my personal goal of a blog post each day for one year, and despite the many challenges of this year, I was successful! Certainly not all the posts are award-worthy, but just the act of writing every day was quite beneficial for me. It allowed me to express some of my grief, and also kept me disciplined as a writer.

I’ve learned a great deal about Alzheimer’s and dementia over the past year. I’ve read many articles about medical studies and new treatments which offer some hope. I’ve also read many heartbreaking personal stories, from caregivers and family members who have had Alzheimer’s touch their lives. There are so many brave souls out there, who behind closed doors, deal with the demons that dementia can unleash. For many, their struggles go on silently, with no outside help.

The last photo of Dad and I together, July 2011.

The last photo of Dad and I together, July 2011.

One of my reasons for beginning The Memories Project was to showcase both the horrific and the tender moments that Alzheimer’s can create. I wanted to be a voice for others who were too overwhelmed with caring for a loved one with dementia at the moment, by sharing my own story.

The biggest reward of doing the blog has been all of the wonderful fellow bloggers I have met online. I have smiled and shed tears after reading the posts from Alzheimer’s family caregivers. While every experience is unique, there are some common issues that many of us deal with.

Now that I have spent a year telling my father’s story through my memories of him, this year, I want to turn my spotlight on to others who are dealing with Alzheimer’s in their families. So The Memories Project will continue, as I turn my attention to Alzheimer’s advocacy.

Thanks to the loyal core of readers who have joined my on this blogging journey over the past year. I so appreciate your kind comments and support.

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January 3, 2013 · 7:17 pm

Grief doesn’t necessarily get easier

When you lose a family member, well-meaning people usually say that things will get easier as time goes on.

But I don’t think that’s entirely true for everyone. Certainly, time marches on. But how one reacts to a death of a loved one, how they process their grief, well, that’s really a very individual process. I’m sure there are plenty of statistics and surveys out there that say generally speaking, people’s grief lessens after x amount of time. I think most of us know that when it gets personal, stats go out the window.

Mom and Dad in Ruidoso.

Mom and Dad in Ruidoso.

I’ve been thinking a lot about Dad lately, and that is understandable. The one year anniversary of his death was December 20th. Then it was the holidays. Certainly I have not been sitting curled up in a ball crying my eyes out with grief, but the pain still ripples through my heart. The guilt over what I would have, should have done differently still is something I’m working through.

Mom also remains grief-stricken, so I have to deal with that as well. On New Year’s Eve, she found a copy of the message she wrote in the 40th anniversary card she gave to Dad, the one she had cremated with him. While everyone else was ringing in the new year, Mom was grieving.

Tonight, she broke down again, letting me know she tells Dad every day that she loves him. Her message is always the same. She misses Dad dearly, but the way he was before Alzheimer’s. She could not wish him back the way he became with dementia.

I agree.

So for some people, grieving the loss of a loved one does become easier. For others, it may change shape and form, but it is still a pain buried deep within the heart.

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January 2, 2013 · 6:13 pm

Dad trying to keep warm

It’s been a bit chilly here lately, and when I stop to rub my hands together to warm them, I can’t help but think of Dad. I can still see a crystal-clear image in my mind of Dad standing outside our apartment building, before or after a smoke, and the dramatic way he would rub his hands together. “It’s cooold,” he would exclaim, though southern California winters were as mild as they could be, especially compared to his childhood in Belfast.

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When my parents moved to the mountains of New Mexico, Dad experienced bitterly cold winters for the first time since his young adult days in England and New York City. I don’t remember him ever wearing gloves, but he would wear a big bulky jacket that threatened to swallow him whole. And I can see him standing by the car, the last one he would ever drive, and rub his hands together, fast and hard, trying to keep them from going numb.

My hands are always the first thing to ache when I’m out in cold weather. Still, I rarely break out the gloves. I just instinctively rub them together, though the warmth it generates may be more nostalgic than anything else.

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