Party at Harry’s Place!

31 Tuesday Dec 2013

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Events, Helpful Resources, Holidays, Inspiration, Ruminations, Smiles, Support system, Technology, Tips

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alzheimers, alzheimers awareness, alzheimers support, caregiving, dementia, life with alzheimers

2014 I’ve never been big on all the hoopla that surrounds New Year’s Eve. As a serious introvert, my perfect celebration involves enjoying a nice quiet evening with a fire and a couple of glasses of wine. If I’m feeling really adventurous, I’ll break out the DVD player and pop in When Harry Met Sally (my favorite feel good movie of all time)!!

This year will be a little different, but that’s another post for another day and probably another website. I may or may not title it “Family Circus” – draw your own conclusions from that. ((( Smile )))

A Huge Dose of Inspiration

But back to the topic at hand! What I really want to do is introduce you to Harry Urban, founder of the Forget Me Not community on Facebook. It just so happens that he and his wife, Hazel, are hosting a virtual New Year’s Eve bash to ring in 2014! What’s that, you ask? Well, read on for more information!

I had a chance to talk with Harry for the first time during a video chat over the weekend and really enjoyed the conversation. It’s one thing to hear from care partners and other advocates, but getting input from the people who are living with this disease day in and day out is particularly enlightening.

I have immense respect for people like Harry and Norrms McNamara who are so open and honest about what it’s like to receive that diagnosis and live with dementia. How I wish I’d been able to talk to one of these gentlemen years ago in the early stages of my mom’s illness.

After Sunday’s call, I was inspired to do a post on Harry and asked if I could email him a few questions. Of course, he was more than willing to oblige and I’m happy to be able to share this insightful Q&A with you.

Q&A with Harry

AN: So many people who are diagnosed fall into denial and/or depression, and they commonly withdraw more and more as the disease progresses. You have managed to do the opposite so beautifully. To what do you attribute your positive attitude, desire to raise awareness, and ability to inspire thousands of people?

HU: Like so many others, I fell into denial and depression when I was first diagnosed. I was scared and didn’t know what my future was going to be like. I explained my diagnosis to my family and friends and was quickly abandoned by most. They just didn’t know how to deal with what I told them. This only added to my depression, and I realized this should never happen to anybody. I started to pick up the pieces and made a vow I would try to help others so they would never have to go through the hurt and pain I did.

I spent a considerable amount of time trying to figure out why patients with dementia are treated like this. I came to the conclusion that people are not in general nasty, but rather, they don’t understand the disease. The same goes for someone that was diagnosed; they don’t know what the future holds so they assume the worst.

It appeared to me that education was what is needed to better understand what our lives are like. The myths and stigmas associated with dementia had to be broken. The person who was diagnosed had to believe their life is not over but many fruitful years lie ahead. Over the past several years I have been telling my stories with amazing results. I don’t get pity, but the ideas of dementia are changing. I like to think I am spreading the word of HOPE, not a cure, but a better quality of life for us suffering from dementia.

fmn AN: Who is your greatest inspiration?

HU: I have so many. All of them suffer from some form of dementia. I have a friend, Kenneth Teaspoon Overcast who suffers with dementia. What an amazing man; he realizes that he lost most of his skills but still manages to live a wonderful life. He is surrounded by family and friends that simply adore him. The support his family showers him with cannot be beat. Every bump in the road that comes along, he handles with grace.

Ken suffers greatly but never lets his disease control his life. I want others to enjoy the happiness Ken has living with dementia. Ken inspires me to speak out so others can also be happy.

AN: What was the inspiration for Forget Me Not, and how long has the group been in existence?

I struggled with my emotions when I was first diagnosed and join several support groups. I found out that all of them just did not fill the void I had. Prayers and hugs are nice but I needed more. I wanted to talk about my disease without being judged. I wanted a safe, comfortable place that I could vent about my disease and explain why I do the things I do. I wanted a group that raises awareness, where members share their stories in order to help others.

My friends knew I was unhappy and convinced me to create a group that offered love and support but also gave members the opportunity to discuss their disease. February of 2013, I did that by creating Forget Me Not.

I soon realized you cannot have a successful group if it was all doom and gloom so we created “sister” groups so we could escape the frustrations of Dementia. We also started a Spanish group called No me olvides for the Spanish community. This group is a mirror image of Forget Me Not with the same ideals.

Click to Enlarge

AN: Can you share a little bit about your virtual New Year’s Eve party? What is it? What made you decide to do this? How can folks join the fun?

HU: One of the worst feelings for those living with dementia is the feeling of loneliness, especially around the holidays. On Christmas Eve, my wife and I were talking about how many people are spending the evening alone so we started a Zoom video chat and invited anybody on Forget Me Not to join us to simply say hello or spend the evening with us. It was a huge success and many laughs were shared that night.

That is when we thought why can’t we have a virtual New Year’s Eve party? Many care partners can only celebrate bringing in the New Year at home, so why not stop in to visit us!

I plan on starting a Zoom video chat at around 8:00 EST so anyone can stop in to wish each other a Happy New Year or stay and party with us to bring in the New Year.

Everyone is welcome and the instructions for joining are as follows:

Please click this URL to join: https://zoom.us/j/499150272

Or, go to: https://zoom.us/join and enter meeting ID: 499 150 272

To join from dial-in phone line:

Dial: +1 (424) 203-8450 or +1 (209) 255-1200
Meeting ID: 499 150 272
Participant ID: Shown after joining the meeting

Life Is Meant To Be Lived

As you can see based on Harry’s comments, there’s so much we can learn if we’re just willing to listen. I think what inspires me so profoundly is his grace and wonderful attitude despite being dealt what we can all agree is such an unfair hand.

Harry reminds us that while research is vital, it’s equally important to give today’s dementia patients the absolute best quality of life possible. He serves as a role model to those who have been and will be diagnosed – life does go on, and it can be a great life.

If the day should come that I walk in Harry’s shoes, I can only pray to do so with half as much poise, courage, and sense of humor. Thank you for all you do, Harry, and most of all, thanks for being you!

Are you a patient or care partner? If so, I would recommend joining Harry’s Facebook group, Forget Me Not. Not only will you find a wealth of helpful tips and information, you’ll also meet some fantastic people who understand what you’re going through and “speak your language.”

Harry also hosts the Forget Me Not Memory Cafe, as well as a weekly video chat support group.

Be safe everyone, and Happy New Year!

Alzheimer’s: It’s Not Contagious

20 Sunday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, fear, Inspiration, Mom, Ruminations, Smiles, Support system

≈ 14 Comments

Tags

alzheimers, alzheimers support, caregiving, dementia

I saw a picture a few days ago, and it’s been on my mind ever since. The image was that of an older woman sitting alone on a bench looking off into the distance. The caption said, “Alzheimer’s isn’t contagious.”

As advocates, we place a great deal of emphasis on funding for research – we think a lot about the future – hopefully one without Alzheimer’s. And all of that is tremendously important. However, the image of that lonely woman reminds us we must also focus on those living with the disease today.

Lonely Days

How many dementia patients sit alone in a facility, day after day, month after month, and year after year? One might argue that technically they aren’t alone; there are people around, the hustle and bustle of daily goings on, shower time, mealtime, and an occasional balloon volleyball game.

Don’t fool yourself – they are alone.

This begs the question, why do friends and family head for the hills when they hear the word “Alzheimer’s?” It’s something I see mentioned regularly in various caregiver forums. In addition, more and more courageous individuals who are in the earliest stages of the disease are speaking out; these are folks who still have so much to contribute to the world, yet at the first mention of the “A” word, people begin writing them off.

Here Today, Gone Tomorrow

So why is this post-diagnosis mass exodus so common?

Is it the fear of being asked for help? Is it too difficult for them to see? Do they just not want to be bothered? Or do they think the person is already gone so there’s no sense in visiting?

Not many would admit to most of these, though I have had a few people tell me it was just “too hard” for them to see my mom “that way.”

One can only imagine how egocentric that sounds to a caregiver who faces the tremendously harsh reality of Alzheimer’s every day. I think all caregivers will agree it’s no picnic for us to watch a loved one slowly drift away into the world of Alzheimer’s, but we weren’t given a choice in the matter. However, every moment we spend with them is ultimately a beautiful blessing.

Food for Thought

I want people to understand several critical points, and if reading these words encourages just one person to visit a friend with dementia, I’ll consider that a victory.

Regardless of how far along someone is in the disease, in many ways, they are still same person. Perhaps they have difficulty communicating and can’t do the things they once could, but they are very much alive. My mom’s spirit and spunk, along with many of her other personality traits were apparent until the very end. She was still Marilyn through and through.

You have the power to give one of the most precious gifts in the world – a simple moment of joy – to an Alzheimer’s patient. It doesn’t cost a dime, just the time it takes to sit and talk with them, stop by with a favorite treat, or simply hold their hand for awhile. Sure, they’ll forget the visit, but the way you made them feel will remain. You will have brightened their day and what could possibly be more important than that?

Our situation was pretty typical; very early on, even while my mom was still at home visits became less frequent. Eventually, most everyone had disappeared. But I think those few who did remain stalwart supporters would tell you they reaped rewards beyond measure by spending that precious time with Mom. I would venture a guess that as difficult as it was for them to watch their friend decline at the hand of Alzheimer’s, they felt they received back just as much as they gave. The love, warmth, and yes, the joy, of connecting with an Alzheimer’s patient is a unique and special gift.

Glass Half Full or Half Empty?

One might lament the fact that “she’s a mere shell of the person she used to be,” and there’s no doubt this is one of the most heartbreaking, devastating diseases that exists. But even in the worst of circumstances, there is room for a bit of the “glass half full” mentality.

Remember that even after a person with Alzheimer’s can no longer speak, they need love and affection. They don’t cease to be a human being.

You can’t put a value on a simple smile or a gentle touch. It definitely requires stepping outside of one’s comfort zone and setting aside the deep personal sadness and fear that may exist. However, it’s likely the 30 minutes you spend with an Alzheimer’s patient will be the most meaningful part of your day.