The Loss of an Alzheimer’s Champion

19 Saturday Jan 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Celebrities, Inspiration

Pauline Friedman Phillips, more commonly known as Abigail Van Buren – or Dear Abby – passed away on January 17. She was 94 years old and had suffered from Alzheimer’s for over 15 years.

I remember hearing a lot about Dear Abby, probably back in the 70’s, but never really paid much attention. As I’ve been reading about her the past couple of days, I’m finding she was actually quite an extraordinary woman. In 1956 at the age of 38, she approached the editor of the San Francisco Chronicle and informed him that the paper’s advice column was boring. She submitted samples of her work and was promptly hired to take over the column. In 1956, that was a pretty bold move for a female! Let’s face it, the 1950’s was the decade of June Cleaver, a far cry from the career women of this millennium (absolutely no offense to stay at home moms, but it was a different world sixty years ago!).

Not afraid of ruffling feathers, Mrs. Phillips was an early supporter of gay rights, and when asked her opinion on Viagra, she called it “wonderful.” While Dear Abby was once known for advising against divorce, she credited her readers with teaching her that under certain circumstances, it was the only healthy choice. Willingly admitting that she could be cocky, she also showed great compassion for her readers. Upon receiving letters from people that sounded suicidal, she would pick up the phone and call them, encouraging them to seek help.

I had no idea that she was also a very early advocate for Alzheimer’s disease, again showing her willingness to tackle tough topics. In 1980, she published a letter from a woman seeking advice after her husband had been diagnosed with ALZ. Abby assured the distraught woman that she wasn’t alone and told her about a newly formed organization called the Alzheimer’s Association. Within two weeks of that column’s publication, the Association was flooded with inquiries.

Over the years, Abby continued to help connect people with the ALZ resources they needed, so there was some irony in the fact that she herself began to show signs of the disease in the mid 1990’s. Lonnie Wollin, one of the founders of the Alzheimer’s Association calls her impact on ALZ advocacy “profound.” She credits Mrs. Phillips with boosting awareness and helping enable the Association obtain funds to support families, educate caregivers, and ultimately increase the country’s research budget from $2 million in 1980 to over $450 million today.

So from all of us who have personal experience with this unrelenting disease, and for all whose life will be touched by it in the future: Thank you, Dear Abby. May you rest in peace. ♥

The Lesson I Learned About GIVING Support

16 Wednesday Jan 2013

Posted by Ann Napoletan in Blogging, Caregivers.com, Ruminations, Support system

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Today on Caregivers, a bit about the importance of support in One Caregiver’s Circle of Support.

We all know it can be very hard to ask for help; in fact, it’s even difficult to accept help when it is readily offered.

Through this experience, I’ve learned that if you are waffling about whether or not to reach out to someone going through a rough time, it certainly can’t hurt to do so. I know that many times I’ve been guilty of thinking about it, and then saying to myself, “Oh, I don’t want to intrude.” Or, “I’m sure they have all the help they need; I don’t want to be a bother.”

Going forward, I’ll think twice before making those assumptions.

In those final weeks, even when someone offered to bring food or called to see if we needed anything, my inclination was to respond with, “No, we’re fine. We really appreciate your offer, though.” But there were those people who did it anyway. It was the people who just went ahead and brought food or sent something or just went ahead and came by to sit with me, be it for a few minutes or a couple of hours; they were often the life savers. I am still absolutely blown away by some of the things that people did for us.

Unless it’s a situation where you know the person is very private and truly doesn’t want visitors, just drop off a plate of cookies or a big bowl of sliced fruit – or something that will keep for a later meal. Don’t stay long unless you sense that they’d like the company. If you feel awkward about a visit consider having something delivered; sending an encouraging card and including a restaurant or coffee shop gift card is another nice option.

Whatever you choose to do, it is sure to be appreciated. Just never think that you aren’t important to that person. Chances are, any and all acts of kindness will be welcomed during a difficult time. Never underestimate the power of a thoughtful gesture. I know that in my case, it was such a comfort just being aware that people were thinking about us and keeping us in their prayers.

One Month: Both Eons and Moments

15 Tuesday Jan 2013

Posted by Ann Napoletan in Blogging, Caregivers.com, Grieving, HomeReach, Hospice, Kobacker House, Mom, Ruminations, Saying Goodbye

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Mom-Homegoing Today marks one month since Mom’s passing. I’m having a hard time wrapping my head around that… I keep telling myself I should be feeling back to “normal” here any day now, but when I realize it’s just been ONE month, I think I understand why nothing feels remotely close to normal.

A friend put it in perspective today when she commented on how death leaves our sense of time in complete disarray. Was it last week or 20 years ago? As Elaine said, it’s “both eons and moments.” I can’t think of a more fitting way to describe how it feels.

Funny how God has a perfect way of communicating with us, often through other people. Last night, I began corresponding with a Caregivers reader and found we have quite a bit in common. She lost her mother a year and a half ago after having spent years as her caregiver. It hit home when she explained that a friend of hers who works with grief told her that daughters who are caregivers sometimes lose their identity when their mothers pass and in a way have to relearn who they are.

It makes perfect sense. This is something else I’ve been thinking about but haven’t been able to put into words. It’s not just that I don’t know what my new “normal” is… it’s also that I’m not sure who *I* am now that I’m no longer a caregiver. So much of my identity has been wrapped up in Mom for such a very long time – years and years. In hindsight, during 2012 in particular, dealing with the disease has literally consumed my mind.

And then suddenly, it stopped. Everything stopped.

I got an invitation today to visit a friend in Texas and it took a minute to grasp the fact that if I want to travel, I can – anytime and anywhere I want. It was a sobering realization. For so long, my first thought would have been, “Is Mom in a good enough place for me to feel comfortable going out of town? What if something happens?” It feels good to have that freedom again, but truth be told, I’d trade it in a second to have my mom back.

I’ve been thinking about grief counseling, and a friend is putting me in touch with women who led two different groups that she found very helpful when she lost her mother. Kobacker/HomeReach is another option; they will provide free counseling in a group setting or one on one for a full year. I don’t know if it’s too soon, if it’s the perfect time, or if I don’t need it at all. Will I somehow know when the time is right? Where is the instruction manual for all of this???

Is our situation unique because of the long illness and the complexity that comes from grieving over the course of years only to find out that this is a completely different, even more compelling sort of grief. Will anyone understand?

There’s no doubt about the fact that, emotionally, caregiving sucks the life out of you. BUT, on the flip side it also adds a richness to life that nothing else can – at least not in the same way. It’s such a dichotomy. Overwhelming challenges, overwhelming rewards.

Of course, it took all of this to lead me to my true passion. At long last, I know what I want to be when I grow up (well, maybe not specifically, but you get the idea). Just this week, I’ve had several people reach out to me based solely on my Caregivers writing and that has been so uplifting. I love that my circle is expanding and I’m beginning to make more contacts. There’s something very special about crossing paths with people who share my passion for caregiving and elder care and who want to try to help make this journey easier for those who will come after us. There is so much I want to do and so much I know I can do… The time is now.