Monthly Archives: March 2012

The Silence of Alzheimer’s

Posted on March 29, 2012 | 5 Comments

Dear Family and Friends,

My husband and I celebrate our 26th wedding anniversary today.  The part of our marriage that is the most fulfilling to me is the intense amount of conversation we share. We talk about all kinds of things, and dozens of new topics of interest have emerged between us over the years.

I think I was born talking, running my words together and subjecting the world to a stream of consciousness that was only rarely if ever riveting. My own mom used to say, “I guess you have to talk fast in this family or you won’t get a word in edgewise.”  (Maybe that’s why I love writing; it allows me to organize and share my thoughts in a more logical fashion … not that writing has slowed my talking at all.)

Though often quiet around others, my sweet husband and I can chatter away for hours. He may have learned to be more talkative than most men from his mother. And she and I would often have long conversations while we cooked a meal or shopped or just visited in the living room.  Though we lived more than a thousand miles apart, we tried to make up for it during visits to see each other.

Mom used to share with me interesting tidbits about everything from the customers who visited the Kohl’s jewelry and fragrances counter where she worked part-time while in her 70s (something fun to do, she said), to her international travels with Dad to destinations including Yugoslavia and China. She would talk about the book she currently was reading, or the gossipy news she had learned while volunteering at the local police station. She would talk about fashion, recipes, parenting and her family.

Living so far away from Mom meant that my conversations with her got shorter in what seemed like dramatic chunks.  One time you would visit and she would be able to follow along and interject now and again. The next time, she had to be prompted to answer a question.  Then, for a while, she only repeated the things you would invite her to say. But she would nod her head and perhaps give you a slight smile.

And then: “Is the ice cream good, Mom?” 

 Silence.

She has been quiet for months and months now. Once in a great while, she might say a word or two, but it’s been a very long time since she put a sentence together representing an original thought or even reflecting an immediate feeling or need. 

“Do you like the sunshine today, Mom?”

Nothing.

She doesn’t look sad or happy. She just keeps her chin and eyes down. When she does look up for a moment, there is no emotion. No sign of recognition. Just blankness.

There is so much inside Mom that can no longer come out. I try to share with my daughters some of the things Mom said to me over the years,and how sly she could be. I’ve told them how diplomatically she asked me when I was going to start having children, and when I would finally change my last name to my husband’s.

I am grateful my husband is safeguarding the dozens of journals she kept throughout her adult years, until the Alzheimer’s took away her ability to write. Her life is memorialized in those journals, as well as in the hearts of her family. I like to take them out and read them from time to time. You know how it is when you read something from a person you knew well … you can almost hear them speaking the words.

My faith tells me that I will get to hear her speaking her stories again someday. I look forward to that.

Sincerely, Bonnie

 

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Still a Long Way from a Cure

Posted on March 27, 2012 | 1 Comment

Dear Family and Friends,

Shivani Nandi , research manager at the Department of Neurology at the University of Louisville, recently returned from the 2012 Alzheimer’s Disease International  (ADI) Conference in London. She shared some thoughts – some stark, some poignant – with the members of the 2012 Louisville Walk to End Alzheimer’s committee, and I’d like to pass a few of these along.  To me, Shivani’s observations speak loudly and clearly to the continued and growing need for the Walk to End Alzheimer’s, as the disease affects more and more people.  We need a huge influx of funds for more research toward both treatments and a cure, and we also need national plan to ensure a coordinated approach to Alzheimer’s.

According to Shivani:

  • “It’s only too clear that there is not likely to be any end to this disease in the near future. There is not even an effective disease-modifying drug anywhere on the horizon to treat it, let alone cure it. So it’s going to be long process and we can only hope and pray that there will indeed be that one blockbuster drug that will put an end to this mind-destroying disease. “
  • “There were a lot of very exciting presentations on effective psychosocial interventions that involved modifications of the environment and other techniques to vastly improve the quality of life for persons with dementia.”
  • “I was very impressed that there was a parallel session where all the speakers were people living with dementia. See page 23 on this link  for a parallel session called “Living with Dementia: This is Me”. http://www.adi2012.org/Libraries/Documents/ADI_2012_Full_Scientific_Programme_v1_8.sflb.ashx
  • “It was truly an eye opening and yet and humbling experience to hear them speak; and what powerful emotions they had to share. A couple of the speakers already lived in care homes but for one of them her lifeline to the rest of the world was via her computer. Also, one of them was a former physician who lives in a care home but who spoke most wonderfully and without reading from any notes. I was particularly touched by an expression used by one of these speakers who said, ‘It’s not only our caregivers who give. We also have some capacity left to give back to the world.’”

Shivani also noted that two of the invited speakers have been diagnosed with dementia, Sir Terry Pratchett, an acclaimed author, and Helga Rohra, a translator in five languages, who shared their experiences with a packed international audience made up of medical professionals, researchers, caregivers, media, healthcare professionals and the general public. Shivani said she hopes more people with Alzheimer’s come forward to “share their lives and enrich our lives with their stories and also get media attention.” Here is a link to the list of speakers: http://www.adi2012.org/en/Scientific_programme/invited_speakers_copy1.asp

I am grateful to Shivani for sharing her thoughts.  Now, what are your thoughts?

Sincerely, Bonnie

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Posted in Fundraising, Research

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What it means to be a professional caregiver

Posted on March 21, 2012 | 2 Comments

Dear Family and Friends,

My  husband and I feel extremely blessed every time we think about the people who work at the skilled nursing facility where Mom lives.  The CNAs (Certified Nursing Assistants, who make up most of the people who interact with Mom at the home on a daily basis) are always cheerful, pleasant and engaged.  I can’t help but think that maintaining that demeanor is difficult when caring for so many individuals who, on many days, aren’t sad or happy or appreciative or angry or anything in between – if they’re like Mom, they’re mostly just there. Existing, but no longer appearing to experience emotions like joy and gratitude and peace.

But today I was reading a blog post (http://joesteier.com/2011/12/05/becoming-a-cna/)  by Joe Steier, President and CEO of Signature HealthCARE, a nursing home company based here in Louisville. Steier recently went back to school to earn his CNA, and then he spent several days working in one of his facilities.

Steier said he did this not “to copy [the TV show] ‘Undercover Boss’ but [as] a quest to understand ‘The Work’ by overcoming my own inner fears about being that close to all of it, including the most vulnerable of times and the inability to do the simplest things—brushing teeth, going to the bathroom . . . .”

Mom lives 400 miles away, so my husband and I have never provided daily care for her.  The only member of our immediate family who did that for her was Dad, and the fact that he hid her condition from his children for so very long is, to me, yet another indication of how much he loved her. He clearly knew, long before we did, that her memory lapses were more than just forgetfulness. But he fought every day, even after she was diagnosed, to stay with her, to sit side by side on the same couch, to eat at the same table, to sleep in the same room. He helped her with those basic, but very personal hygiene and daily living tasks, never letting the sometimes-arduous effort diminish his love and respect for her.

In his blog post, Steier talks about what it was like to provide that kind of personal care for people he didn’t know well. I deeply appreciate that the CEO of a $700 million company would take the time to come to know his “customers” by serving them.  Certainly, his employees must appreciate his efforts. And perhaps those residents whose memories still enable them to understand what he did also appreciate the effort.

It doesn’t matter though…whether the residents appreciated it or not, they deserve to live in a home run by a company whose CEO truly understands what happens in their lives on a moment-by-moment basis. A CEO who respects them as individuals.

Steier’s final paragraph showed me that he does, in fact, love the people his company serves: ”After two days and 16 hours on the job, I wanted to go back a third day, to be with the precious, the worn, the grateful, the vulnerable and listen and love all over again. One look of joy or a smile of gratitude was all it took to fall in love with each resident I had the privilege to serve. And I wanted to serve them—even the hard doing because what they gave in their frail strength of love and appreciation was even more than I was able to give. Simply said, they, our people, our revolution, the aged and the vulnerable are worth it. They just are.”

Sincerely, Bonnie

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Posted in Caregiver

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Talking About Bad News with Mom

Posted on March 18, 2012 | 2 Comments

Dear Family and Friends,

I was chatting with a friend recently about her mom, who has Alzheimer’s. She was trying to decide whether to tell her mom that a dear family friend had passsed away. What a difficult question during an already difficult time.

We talked about how much her mom remembers from day to day, and even from hour to hour, and she said her mom is in the stage where she often re-asks the same question several times an hour.

Here are some options:

  • Tell mom, as gently as possible, and see how she reacts.  If she is extremely upset or distraught, that’s a clue that perhaps you don’t need to re-tell her when she forgets.
  • Don’t tell mom. If she asks about the friend, just say something vague, such as: “She’s away right now” or, “She’s with some long-lost friends and family.”  Neither is untruthful, and they don’t add to mom’s grief.
  • Don’t tell mom. Just try to avoid the question by changing the subject. Again, see how mom reacts. If she keeps pursuing the question, you can resort to either of the above options.

I didn’t include as an option telling mom the whole truth every time she asks.  I feel that it is unnecessary to make her go through the trauma of learning such sad news over and over, even if she doesn’t remember going through it the first time.

Neither would I avoid showing mom pictures of the friend, or talking about the friend.  I try to bring up good memories as much as possible when visiting my own mother-in-law, and other friends who have Alzheimer’s.

Still, sometimes it’s hard to remember that a person with Alzheimer’s is NOT being stubborn. It’s hard not to think, “Gosh, I just told you that. Come on…just try a little harder.”

But stubborn is an attitude. And Alzheimer’s is an irreversible disease. What’s more, it’s ultimately fatal. That’s why I believe in protecting the person with Alzheimer’s from bad news they won’t remember a few hours or minutes later. It’s easy to get frustrated sometimes, but I always feel so much more uplifted when I’ve been able to leave a visit knowing that my loved one has experienced as many moments of joy as possible during my time there.

What do you think?

Bonnie

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Alzheimer’s Association is an Official Charity of Derby Marathon, Mini-Marathon

Posted on March 12, 2012 | Leave a comment

Here is some information about free training being offered for Team Alzheimer’s members: ALZ Marathon Training Flier

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Posted in Kentucky Derby Festival Charity

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One in Seven with Alzheimer’s Lives Alone

Posted on March 8, 2012 | Leave a comment

Kentucky Alzheimer’s Statistics 2012

Dear Family & Friends,

The Alzheimer’s Association released its annual “Facts and Figures” report today, and what I found most frightening is the fact that one in seven people with Alzheimer’s Disease lives alone. That means approximately 11,430  Kentuckians have a fatal disease with symptoms that make them more vulnerable to all kinds of dangers, and no one is right there by their side to be sure they don’t wander, or fall, or forget to eat or take their medicine.

Even scarier, up to half of these Alzheimer’s patients have no one who is identified as their caregiver. No one is regularly checking in to make sure they’re eating, taking showers, answering the door only for people they know. If someone with Alzheimer’s who is living alone takes a bad fall, and no one reguarly checks up on them … oh, I cannot imagine.  It could be days or even longer before someone comes to help.

Have you ever felt really alone?  My husband travelled on an extended business trip recently and there were several nights that I was home by myself and just plain lonesome. I am embarrassed to tell you how many times I re-watched the Twilight movies. But I was always safe, warm, and had everything I needed to take care of myself and entertain myself. If I had fallen, I knew there were people who checked in with me daily and that they’d figure out very quickly that something was wrong and head over to check on me.

But what if your brain wasn’t functioning correctly? What if something in your body hurt, but you couldn’t figure out why? What if you walked out your  door and got lost? What if the food in your home had gone bad, but you didn’t know? And what if no one paid attention?

The 2012 Facts & Figures report is another, very stark, reminder that we must find a cure for Alzheimer’s, and some treatment that slows it down. That’s what the 2012 Louisville Walk to End Alzheimer’s is all about – funding the research to find a cure, and providing resources to help those with the disease and their families.

But in the meantime, and at all times, we have to remember to check on our neighbors, friends and loved ones. Especially those living alone.  I’m going to make a more concerted effort to do that.

And maybe I’ll invite some of my neighbors to walk with me on Sept. 8.  Won’t you visit your neighbors and friends living alone and ask them to join you at the Walk to End Alzheimer’s as well?   Please visit www.alz.org/kyin and sign up today.

Thank you! Bonnie

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ALZConnected Helps Connect Those With Alzheimer’s, Caregivers

Posted on March 2, 2012 | Leave a comment

Dear Family and Friends,

Got some information from the Alzheimer’s Association about a new website called ALZConnected, and thought I’d share. I’ve already signed up, and have connected with several women that the site suggsted.  Sharing stories and learning from each other is a great way to ease caregiver stress and share information about available resources. I think this could be especially useful for people who, for whatever reason, cannot meet with support groups.

“ALZConnected is the first dedicated social networking community for people with Alzheimer’s, their caregivers and others. Through this platform, users can connect and communicate, pose questions and offer solutions to dementia-related challenges, and create public and private groups organized around a dedicated topic. The website is www.ALZConnected.org.”

ALZConnected provides a safe place for people like you and me to connect with others in similar situations 24 hours a day, 365 days a year at no charge.  Anyone who is or has been affected by the disease can use the site.

If you’d like to connect with me on the site, my user name is bhackbarth. I would love to hear from you!

Sincerely,

Bonnie

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