Monthly Archives: May 2012

Walk Recruitment Event Makes Alzheimer’s Even More Personal

Dear Family and Friends,

As involved as I am in the Alzheimer’s Association of Greater Kentucky and Southern Indiana, I hear a lot of statistics about the disease.  Did you know that there were 80,000 Kentuckians with Alzheimer’s in 2011, and that more than 264,000 family members and friends provided these persons with more than 300,000 hours of unpaid care?

But here’s  where it gets personal. So far this spring, I have attended two community events to recruit teams for the Walk to End Alzheimer’s in Louisville on Sept. 8 and, without fail, every single person we talk to at these events has been affected in some way by Alzheimer’s disease.  For some, it was a grandmother or grandfather who had died, or was currently struggling with the disease. Several people had lost their husband or wife. For others, it was a friend, some close, some more distant.  One gentleman at a Farmer’s Market last Saturday first answered “no” when I asked him if he knew someone who was affected…but then he backpedalled and said, “Oh yes, yes I do,” as his face took on a sadness in stark contrast to the sunny morning in St. Matthews.

That same Saturday, a woman about my age and I shared stories about our mothers-in-law.  And we both lamented that Alzheimer’s is one of the top 10 causes of death in the United States for which there is no cure. How can that be the case, so many years after the disease was identified? Yet, to date, there is not even a treatment to stop the progression of the disease as it creeps through the brain, destroying both cherished memories and practical knowledge. There are treatments for symptoms, but nothing to stop it or cure it.

One woman did pull me aside and say that all disease, including Alzheimer’s, was the victims’ own fault for not taking care of themselves.  She proudly stated that she was 76 years old and was in perfect health, thanks to her lifestyle choices.

I suppose nothing will change that woman’s mind, but I would like to have seen the conversation between her and my mother-in-law before Mom was diagnosed.  Mom may have been subtle and even proper in sharing her points of view, but she would never have let that woman walk away without setting her straight.  I might have argued more vehemently with the woman, had I not been so shocked, and then saddened by her mindset.

Mom has had high cholesterol throughout all the years I’ve known her. She was born with the propensity for it, and until she started losing her memory and ability to take care of herself, she took every precaution advised by her doctor. She took her medication religiously. She rarely ate an egg, and she watched her weight and exercised.  I don’t remember her ever being sick, in fact.  She was one of the healthiest persons I had ever known. Yet she counted that as a blessing, rather than something she’d earned.

Yes, diet and lifestyle may reduce the risk of getting Alzheimer’s disease.  But, if everywhere you look and everyone you meet has been touched by the disease in some way, we begin to understand that we have to do more to stop it. We have to find a cure.

For me, like so many of you, Alzheimer’s is personal. My husband’s grandmother suffered dementia, although we don’t know if it was Alzheimer’s. And now his mother is in the final stages.  I don’t want him to suffer the indignity and loss that always comes with this disease. And I don’t want our children to suffer that either.

I suspect Alzheimer’s is personal for you as well. Let’s do something about it. Let’s Walk to End Alzheimer’s on Sept. 8.

Sincerely,

Bonnie

Switching from Partner to Caregiver

Dear Family and Friends,

My new friend, Barb Webb, shared the following with me a couple of days ago. She had told me before she wrote it that her husband, Al, who had been diagnosed with Alzheimer’s three and a half years ago, was told he could no longer drive. The news had thrown them both into a new phase of dealing with Alzheimer’s.

I waited to read Barb’s words until I knew I could be in a private place to really focus. I’m glad I waited, because I couldn’t stop the tears that started just a few sentences in. 

There is still hope in Barb’s heart, but things are changing, and she feels the need to be honest with those around her about what Alzheimer’s is really like. I am grateful that she shared this with me and is allowing me to share it with you. Please keep her and Al in your prayers.

Bonnie

     I am really feeling a little vulnerable right now because I am planning on stepping out of my comfort zone.  I am going to speak of some feelings that I share only with Al & my therapist.

      I am a glass is half full kind of a person.  And I normally come across that way with a pretty upbeat attitude.  I have attacked my husband, Al’s, diagnosis of Alzheimer’s in the same manner. I have given talks about Alzheimer’s and I have written a couple of articles and journaled on a blog and a website, but what I have always talked about were the ways Al & I are moving through this insidious disease with humor, acceptance and hopefully, grace. 

But those aren’t the feelings I have all the time.

And this afternoon I realized that it isn’t really fair to everyone I am around to portray myself in that way without also sharing the frustrations and problems both Al & I face daily.  I am afraid my sometimes Pollyanna attitude may be more of a hinderance than a help to others.  I don’t want others to ask themselves what is wrong that they can’t handle the daily problems Alzheimer’s presents in a more accepting way, like Barbara appears to do.. And I certainly don’t want anyone to feel less adequate than anyone else.  We are all in this together and unfortunately, each day presents a new set of challenges and tests us all to our limits.

      So, here goes…. Last week Al & I went to a new neurologist, Dr. Jicha, at UK in Lexington. We both liked him very much until he told Al he could not drive anymore.  Of course, Al’s opinion of him changed immediately.  And ever since then, he has been mad at Dr Jicha, me, the world, even God.  I mean intensely mad, like I have never seen him before.  He does not want to get past the anger and try to move into acceptance.  And he is quite depressed. 

I don’t blame him & I acknowledge that he has the right to feel as he does. But for the first time in the past 3 ½ years, I don’t know how to handle things and there is nothing I can do to help him.  I understand the anger.  I understand the feelings of inadequacy and embarrassment at having to be driven everywhere.  I also understand that the difference between men and boys is the price of their toys.  And cars and trucks are a big part of their toybox.  But there is nothing I can do to help him along this journey past the anger and on to acceptance.  So I watch him rail at God, say he isn’t going back to Dr. Jicha again and tell me it is my fault that he can’t drive.  And all the while, I see someone acting unlike the man I love and have been married to for over 30 years. He has always been the patient and understanding person in this relationship. The funny part is that I am not the most patient person in the world (I am a Type A, after all!) but this past week I have not lost my temper or gotten angry back at Al.  Instead my heart is aching for him and what he is going through. 

Ever since Al’s diagnosis I have looked at this as both of us hurting, both of us trying to maneuver along daily and both of us on the same page.  But after this week I realize that isn’t true.  There is no way I can hurt in the same way as Al is hurting, no way I can feel the depth of his anger or know the pain of trying to remember something and failing miserably time after time.  I also realize that up until now I really haven’t been feeling like a caregiver in our relationship because he still is able to do most everything for himself and make many decisions.  But with this new development I now am actually feeling more like a caregiver and it scares the heck out of me. 

Will I be able to help Al through this stage of anger and on to acceptance? 

Will I be able to keep him safe? 

Will I be able to continue to make him see how much I love him and still need him? 

I don’t know the answers, but I do know that I am going to continue to try to keep that glass half full attitude, continue to share our stories and most of all, continue to rely on God’s strength and grace!!

National Alzheimer’s Plan Created

Obama administration presents national plan to fight Alzheimer’s disease

Health and Human Services Secretary Kathleen Sebelius today released an ambitious national plan to fight Alzheimer’s disease. The plan was called for in the National Alzheimer’s Project Act (NAPA), which President Obama signed into law in January 2011. The National Plan to Address Alzheimer’s Disease sets forth five goals, including the development of effective prevention and treatment approaches for Alzheimer’s disease and related dementias by 2025.

In February 2012, the administration announced that it would take immediate action to implement parts of the plan, including making additional funding available in fiscal year 2012 to support research, provider education and public awareness. Today, the Secretary announced additional specific actions, including the funding of two major clinical trials, jumpstarted by the National Institutes of Health’s (NIH) infusion of additional FY 2012 funds directed at Alzheimer’s disease; the development of new high-quality, up-to-date training and information for our nation’s clinicians; and a new public education campaign and website to help families and caregivers find the services and support they need.

To help accelerate this urgent work, the President’s proposed FY 2013 budget provides a $100 million increase for efforts to combat Alzheimer’s disease. These funds will support additional research ($80 million), improve public awareness of the disease ($4.2 million), support provider education programs ($4.0 million), invest in caregiver support ($10.5 million), and improve data collection ($1.3 million).

For the remainder of this news release, please visit: http://www.hhs.gov/news/press/2012pres/05/20120515a.html

 

Making Mother’s Day Meaningful When Mom Has Alzheimer’s

Dear Family and Friends,

Mother’s Day was always a pretty special day during my childhood … partly because my mom always made sure we understood the axiom, “If mom isn’t happy, ain’t no one happy.” 

So making her Mother’s Day a happy one was a priority! Now that she is gone, I love to think about some of the silly things we did to achieve that goal….and she always appreciated whatever it was.

Truthfully, of course, my mom was the critical household engine, the face of our family to the world, and the reason we could all find things to eat and wear every morning. Don’t get me wrong: we all had chores, but she also made sure we learned how to do the things that would one day make our own households run smoothely while we also made our ways in the working world.

My husband’s mother, Natalie, also raised four children, and for many years, her husband was out of town during the week as a travelling sales person. Thus, she did a lot of it on her own.  And my sweet husband, as helpful as he is around the house as an adult (actually, he does almost as much as I do), was the baby of the family as a child. I hear stories from his sisters about how his mom started his mornings by putting a huge stack of toast in front of him as he stumbled in from his bedroom.

Of course, Natalie (I call her Mom) is now in her 13th year of living with Alzheimer’s and she is no longer able to take care of anyone, even herself.  Yet celebrating her special day is very important to her children. We all want to honor her, and remind her how much we love her and appreciate the years and years of daily sacrifices she made for us.

I was reading an article today (http://www.oregonlive.com/living/index.ssf/2012/05/idea_on_making_the_most_on_mot.html) that offered some great tips. The author suggested using music and photographs as a way to connect with Mom.  She also suggested going outside if the weather is nice…often, those living in nursing homes or otherwise limited in their ability to enjoy the outdoors truly appreciate a soft breeze of fresh air on their cheeks and the scent of spring flowers.

The author also cautions against overstimulation, which can sometimes upset someone with a memory disorder.  It doesn’t have to be an elaborate celebration to be meaningful…in fact, just your presence can be what Dad or Mom really wants.

David’s Mom loves hot fudge sundaes, so we always stop by Dairy Queen on the way to visit her.  She doesn’t smile much any more, or make any kind of facial expressions, but you often hear a little sigh in her voice as she takes each bite.

Those moments — moment of  joy — are our goal.  As the disease progresses, the Alzheimer’s patient loses the ability to connect  memories and ideas.  Thus, with Mom, we try to find little things we can do to bring little moments of happiness. Her tiny smile, or lifting of her head to look at us, is enough.

I hope you all have a wonderful Mother’s Day.

Bonnie