Tag Archives: Arizona

Q&A With Blondes VS Brunettes PHX player (& Brunette) Kelly Vaughn Kramer

Posted on by

0

526807_10151536376212324_570563605_n

Photo courtesy of Kelly Vaughn Kramer

When I asked my friend and colleague Kelly Vaughn Kramer to answer a few questions about Alzheimer’s disease and her upcoming Blondes vs. Brunettes Phoenix football game, a volunteer-driven event that helps support the Alzheimer’s Association, her response to one question, in particular, floored me.

ME: Why did you decide to participate in the inaugural Blondes vs. Brunettes event in Scottsdale?

KELLY: I chose to participate in Blondes vs. Brunettes for two reasons: 1. Football is awesome. 2. Football that raises money in support of Alzheimer’s research is even better. Those are the simple reasons. The deeper one is that I’m doing it for you. I’m in awe of what you do for your mother and how passionate you are about the Alzheimer’s Association, your blog and helping people like your mom. I guess in some regard, this is my way of saying thank you. You inspire me.

Until I opened the e-mail containing her reply, I had no idea that she was playing in next Saturday’s inaugural game, in part, because of me.

To be perfectly honest, I simply can’t articulate how her words touched me, so I’m not going to try because I can’t. Even though I’m a writer (allegedly). I mean, who says that? Who does that? Well, turns out, that’s what friends are for. Throughout the years, I have come to rely on a small group of friends for the occasional ear and/or shoulder. Kelly is one of those friends. And because we spend 40+ hours a week together, she is more than aware of my life story. So, whenever the floor has dropped out from under us — (again and again) — and I would come in to work tired and frustrated, or just plain over it, she would be there.

Thank you, Kelly… truly, no words.

Below, Kelly, a player on the brunette team, talks about the disease, her fundraising tactics (she’s raised a lot of money for the Alzheimer’s Association and is still fundraising, so whip out your credit cards), and what she’s learned about this terrible, heart-breaking disease:

Besides my experience, have you been touched by Alzheimer’s disease or other dementias?
I certainly feel closest to your experience, but our nanny’s grandmother also has dementia. Sometimes, she likens helping care for her to caring for children, and that’s an interesting parallel to me — one to which I can certainly relate.

What have you learned about the disease that you found most surprising?
I think the sheer cost of caring for someone with the disease is staggering, and I’m alarmed that there aren’t programs to help mitigate the cost. It’s also disconcerting that Alzheimer’s deaths rose 68 percent between 2000 and 2010. What? That’s an epidemic, in my opinion, and I’m bothered that people don’t seem to pay as much attention to the disease as they do to other diseases.

There are a lot of stats about the effects of caregivers in the workplace and the toll it can take on work performance, etc. As colleagues, you know that I have had to take time off to take care of matters concerning my mom. What advice would you give to employers as more and more caregivers need flexibility to care for their loved ones?
It’s just that — be flexible. Who cares when the work gets done as long as it gets done? Nine to five works in some industries, but not all, and creating a supportive, flexible environment speaks to a progressive company. I also think that employers should foster an environment wherein caregivers feel comfortable talking about what circumstances they face and encourage caregivers to take a little time for themselves, too.

From a friend-standpoint, what advice would you give to those who maybe sometimes don’t know what to say — especially when things are just bad or there’s no clear light at the end of the tunnel?
That’s a tough one, because I think that, as a friend, the instinct is to try to fix what’s wrong. In these cases, you can’t.  But maybe it goes a long way just to say, “Look. I don’t really know what to say. But I need you to know that I’m here to listen.” It’s also important to not take things personally. Caregivers go through a range of emotions, and just because they’re in a slump one day doesn’t mean that it has anything to do with you.

You did some serious fundraising. What tactics did you employ in your fundraising efforts? 
Two words: Email blitz. Basically, I sent an email to most everyone I know and I had my husband send the email to philanthropic people in his company. I also took to social media to encourage people to donate. Even though I’ve surpassed my fundraising goal, I’m not stopping. I’m hoping to raise at least $200 more before the football game, and if I could cross the $1,000 mark, I’d do an end zone dance or two.

At the end of the day, what should people know about Alzheimer’s disease or other dementias?
Alzheimer’s disease and other dementias touch far more people than you might imagine, whether directly or indirectly. That’s why it’s so important to keep having conversations about the disease. Maybe you haven’t had an experience with Alzheimer’s yet, but odds are that you will.

For more information about Blondes vs. Brunettes Phoenix
call: 602-528-0545
e-mail: info@bvbphoenix.org
visit: http://www.bvbphoenix.org.

To help Kelly raise even more money for the Alzheimer’s Association, click here.

Mother’s Day & Dementia… My Own Op-Ed (please share, please spread the word)

Posted on by

9

Another Mother’s Day rolls on by….

Mother’s Day is an awkward holiday. I say awkward because while I understand why we make such a fuss about this day, I can’t help but find it to be somewhat, well, insensitive — to put it bluntly, Mother’s Day is another reminder of what I, and others like me, don’t have. My mother is alive, however, she is far from well. My mother is slowly dying from Frontotemporal dementia. FTD, or Pick’s disease as it’s sometimes called, affects the frontal and temporal lobes of the brain, or the area of the brain that makes us who we are. Call it your personality center. Like Alzheimer’s disease, FTD can cause memory loss, but it can also cause dramatic personality changes, including apathy; many lose their ability to communicate, and because the disease gnaws away at the gray matter that controls behavior, many with FTD act out; they may yell, become socially inappropriate, impulsive, aggressive and completely incapable of understanding that their actions have consequences. Adding to an already challenging and misunderstood situation, some individuals, like my mother earlier on, don’t even realize that something is terribly wrong.

The result for many of us with a “behavioral” parent is that we live with the stress, the stares, the comments, or worse, we live in fear of being asked to leave yet another assisted living facility.

Dementia is not a quiet disease.

Alzheimer’s disease is the number one type of dementia, accounting for about 50-to-80 percent of dementia cases. Unfortunately, more needs to be done in terms of educating the general public about this and other, lesser-known dementias like FTD. Alzheimer’s disease is the sixth leading cause of death in the U.S., and unlike diseases that were once considered a death sentence, i.e.: heart disease, breast cancer, prostate cancer, HIV/AIDS, and stroke, dementia can’t be cured, prevented or even slowed. This is not a manageable disease, and much more needs to be done in terms of funding and research. Today, more than five million Americans have Alzheimer’s disease and that number is expected to hit 16 million by 2050. To put that into perspective, according to the 2011 U.S. Census 3,880,244 people live in Maricopa County alone, and 6,482,505 live in the state of Arizona.

This disease is also expensive, and family members are often the ones who do the heavy lifting — emotionally, physically and financially. Just last year, some 15 million family and friends provided over 17 billion hours of unpaid caregiving. If you put a price tag on their time, it would amount to around $210.5 billion.

This is the calm before the Tsunami.

I always say, we have no survivors. My mother can’t tell you her story. She can’t even tell you if she is in pain. It’s difficult to talk about who my mother was because she’s not dead — to talk about her in the past tense, to say “she was” sounds so cruel; and yet, sometimes the only way to describe the woman who raised me is in the past tense. My mother was a sweet, gentle soul who devoted herself to her family, to her friends, even to complete strangers. Everyone who knew my mother loved her. She was the heart of our little family. Though the disease has robbed her of so much, her core — that gentle soul — remains intact. Today, when someone approaches her, she just wants to hold their hand or give them a kiss.

Like a child, she seeks love and affection.

As each year rolls into the next — I started noticing something was wrong in 2004… I was 27 — my memories of who she was before FTD fade. I suppose that’s time doing what it does best. And then Mother’s Day comes around. For me, it’s a tragic, in-your-face reminder of what I long for most. Seeing daughters having brunch with their mothers, laughing and talking… I tend to turn away. It’s just easier that way.

My mother doesn’t know my name, she doesn’t even know who she is. Thankfully, she does recognize me. Every time she sees me, she smiles and showers me with kisses. She tucks my hair behind my ear. She takes my hand and, in her own way, tells me about her day as we walk. Even though my mother’s language ability has been reduced to no more than a few words, I understand her. She is my mother, after all.

Yes, I would love to enjoy the kind of relationship that develops between adult daughters and their mothers — that special friendship which occurs later in life. But that’s not my reality. It never will be. This is my reality and I’ll take what I can get because we’re on borrowed time. One day, she won’t recognize me. She’ll just stare.

Hopefully, though, she’ll still take my hand and walk with me.

To learn more about Alzheimer’s disease and other related dementias or to make a donation visit http://www.alz.or/dsw.

Advocacy Work or Advocacy Work?

Posted on by

2

I want to help people like me. People who are doggy paddling their way through this horrible mess. I suppose I feel like my dad and I have had to figure things out the really, really hard way……. so why not pass along the lessons we’ve learned.

TIP#4,592,569: When you’re with your parent, live in their world, talk to them in their language and carry wet wipes. Always carry wet wipes. 

That’s sort of the point of this blog. Share my story. Pass along the info I’ve learned……………….. make life just a little bit easier for someone else. Stuff like that.

A few months ago, I joined a group called YAAA! Young Advocates for the Alzheimer’s Association. The group was formed to advocate change at the federal level……………………… this means contacting your local representative, talking to them about the disease, sharing your story, etc…………………….. I’ve written to my representative a few times………….. to very little avail. I initially received a kind response from his press person—a good sign. I emailed her maybe 2 or 3 times since that first email and in her last response, she told me to send my messages to their general email address………………. from there, it will be distributed to the appropriate person (hopefully, their healthcare liaison………… still, I wonder if the intern will see my name and just hit “delete”).

Maybe Justice for the demented is demented herself. And blind. Or something.

So, I’m frustrated. OK, and a little angry. I pay taxes. I am a law abiding citizen. I have never been a burden to the system. So when I actually need this person to pay attention to me, I’m redirected to a “Write Your Rep!” link. Really? Seriously?

Dude, why don’t you meet my mother? Why don’t you see how draining this disease is on one of your constituents? Why don’t you walk in our shoes for an hour and try to understand why we need funding for this disease and other types of dementias.

I stopped writing to this person. I keep thinking I need to just keep drafting emails and shooting them out, but then I just become angry. I am considering leaving YAAA! I don’t think I have the patience to affect change like this. My patience goes directly to my mother; not to some overpaid congressman/woman whose job, let’s face it, is to get re-elected.

Maybe my purposes is to actually talk to people who are living this nightmare, instead of sending emails to blackhole@house.gov.

I know on some level I’m being bratty and impatient about this. It takes years to make change happen……………… Still, when I think about what our elected officials bicker about, who they pander to, and the issues that actually get people out to vote (Gay marriage? Seriously? That gets you out to vote? Why do you care if two tax payers want to get hitched? And who are you to play judge……….. why not worry about something that may actually impact you directly, like your health, and the fact that you may actually develop something like Alzheimer’s!), I lose faith in the system. I lose faith in government. I lose faith in our people………………………………. No wonder we are the laughing stock in so many countries, our priorities are truly jacked. We don’t care about OUR people. The people are last. And the people don’t care that they are last!

I’m tired of fighting. I fight for my mother on a pretty regular basis. I fight for information. I fight for her right to be heard, for her to be treated with some respect. I educate people about her—usually because she just yelled DESPIERTA AMERICA and I sort of have to explain why she just yelled bloody murder, but still……………………. so when I have to fight for a congressman to do his job and meet his people, I just want to quit. I just don’t know if I have the energy to write and write and write emails for a cause that will take years to manifest……………………… and in truth, I wonder, will more money make a difference in our loved one’s everyday life? I’m talking quality of life here……………….. Will there be more programs dedicated to people with Alzheimer’s or Frontotemporal dementia…………… Will there be training for healthcare professionals so they understand how to deal with someone like my mom versus someone like your mom? Will there be more programs designed to support the caregivers?

I don’t know what I’m going to do. I don’t know what I can do.

>>Flickr pic by Mjecker

Tips from the Others

Posted on by

3

Yes, it has been a while since my last entry, but for good reason… well, you know, it’s a balancing act and I am sorry. But here’s the skinny on me and my demented mom: I was settling into life in Phoenix, starting a new job and working to get my mom access to Arizona’s version of Medicaid, otherwise known as ALTCS. The good news: we got it and will soon have more help! Thank you Larry Shafer!

A huge relief for my dad and I — he was reaching his breaking point, it was so painfully clear. He suffers from the effects of caregiving… as most caregivers do: sadness, shaky hands, more gray hairs. This disease destroys many lives. I mostly struggle with my emotional detachment from my this demented woman. I am trying. I try to think about the fact that my time is limited. I try to hug her and hold her hands. My mom has her moments. They seem to be getting worse. Her challenging behavior tests my patience and I struggle to hold my tongue. I hate that part. I hate being that person and becoming cross with her because she can’t help it.

That said…

One thing I’ve learned about coping with this disease is that you need help — and a bottle of wine. I’ve asked some of my friends to give me their tips for coping with a demented parent. Out of respect, I won’t name names, but I hope you find these bits of wisdom to be helpful — and of course, if you have any nuggets of information you’d like to share please post a comment!

>Immediately make sure that their belongings are in a trust or in your name. That way Medicare & Medicaid can’t take it from you/them. See an elder care lawyer. Find out what you can do together with the person while they can still make some decisions. Massachusetts has a 5 year law. Some are only 3.

>I wish my mom had gotten into a support group for herself. Not really her thing, but I wish she had.

>I wish I had not been in so much denial myself. I did a lot of “Well that is so far off”, “My mom isn’t like that”, “She is fine and will be for a long time”. Now I feel like I am under the gun. I didn’t deal with the future for her. I just led my life as if I only had a short amount of time to live and in a way everything suffered. I put pressure on my career and relationships because I needed them to be secure before my mom got bad and in the end I think I appeared desperate (because without realizing it I was) and that is never attractive to anyone, be that a relationship or an employer

>Figure out all the stake-holders- everyone that could help out, get in the way, or try to help out but end up getting in the way.

>Figure out a good candidate for Power of Attorney as early as possible, and make sure that the people in #1 are cool with #2.

>Go see an elder care lawyer. This is not something that most people are equipped to do, and is generally worth the expense. Assets require protection, and an elder care lawyer is generally prepared with many shelters to help make the transition to Medicare easier.

>Seek care for yourself, either in the form of a support group, or therapy, or both, but you covered that.

>Start coordinating your loved one’s life in such a way that he/she no longer needs a car. The sooner this happens, the safer everyone is.

>Start EARLY on baby-proofing your loved-one’s living area. Anything endangering to him/her or others needs to be gotten out of there BEFORE he/she is in a state where it really becomes an issue. This is a lengthy, unhappy process, but well worth it.

Thanks guys. You’re amazing and I miss you!