Bob DeMarco Alzheimer's Reading Room

Tuesday, June 28, 2011

There is Life After an Alzheimer's Diagnosis


YES, THERE IS LIFE AFTER A DIAGNOSIS OF ALZHEIMER’S DISEASE AND WE’RE LIVING PROOF OF THIS

By Lee and Pat Sneller

Life After Alzheimer's
Lee and Pat Sneller
LEE: Hello, we’re Lee and Pat Sneller.

I was initially diagnosed in 2005 with Mild Cognitive Impairment. We received the word that I have Alzheimer’s Disease in 2009. Not a day I’ll easily forget!

Here we were, both enrolled in clinical trials as healthy volunteers, and we’re told less than a third of the way through the testing that I have Alzheimer’s.

I don’t think I’ll ever forget the impact of that announcement – out of the blue – completely not expecting it – I was devastated.

Before February 6, 2009, I was Lee Sneller, father, husband, businessman, son.

After February 6th, I became Lee Sneller who has Alzheimer’s.

It became an identifier, whether I liked it or not.


PAT: And Lee wasn’t the only one impacted. Learning news like this is like throwing a boulder into a pond – the ripples are immediate and powerful.

We both felt like we’d been punched in the stomach, it left us breathless – shocked – in disbelief. And devastated.

Because, we knew already that Alzheimer’s disease is not curable, can’t be delayed, and can’t even be stopped. The diagnosis happened to both of us, not just Lee.

We have been married for 46 years. I’m here to tell you, when you’re married, you forge a partnership of equals who work to make the best versions of ourselves. For better, for worse…

Alzheimer’s is now a part of both our lives.

LEE: It isn’t OK that my wife worries about me, and that my kids worry about me. Heck, I worry about me! It’s not good that at the age of 71, when I should be thinking about traveling and playing with my grandchildren, Pat and I are worrying about the next drug therapies and insurance claims and deductibles.

However, I decided to accept the changes in my life because I refuse to lose myself in grief and anger. I choose not to waste one moment of my life.

Don’t think that I accepted this diagnosis over night, because I didn’t – I had to learn to accept what has happened. But I’m NOT hiding any more.

I am learning as much as I can about the disease. For example, I decided to join an early Alzheimer’s support group called the Trailblazers, sponsored by the Alzheimer’s Association, and this has helped me grow strong to meet the challenges I now face. I CHOOSE ACTION.

PAT: The Trailblazers support system also is for caregivers, so I, too, have a voice there. It has been extremely helpful to meet with other couples who are traveling this same road .

The group has allowed both Lee and I to learn from others, share our own experiences, and have the opportunity to speak with family caregivers in the community and professionals like you. We appreciate Carole Larkin’s invitation to speak with you today!

LEE: One question that Carole asked us to address with you is, “What kinds of routines have proved helpful so far?”

You may have heard that routines are good for people with Alzheimer’s, and I think that’s very true. Knowing what to expect during the course of a day adds a layer of comfort and security that allows me to function better.

For example, when I get up every morning, I go outside to retrieve the newspapers. Both Pat and I enjoy reading about the community and current events. Sometimes she will have questions for me about something I read, and this helps me focus and work harder to remember. We have always enjoyed a good give and take, and we see no reason to stop now.

I make my own breakfast and lunch – Pat teases me that I always make the same thing for these meals – but, what can I say, I’m an engineer, I like things to be the same!

After my shower, I like to go for a walk down the street around a pond that’s nearby. I treasure hearing the birds, feeling the sun on my skin, and interacting with nature. It’s a brisk walk that gives me some exercise and stimulation. I always carry my cell phone so I can call Pat if I need her; sometimes, SHE calls ME because I don’t return on time. Usually, I get sidetracked by visiting with neighbors on the way. Computers are still central to my life, and I frequently check messages. I have found that I can’t do two things at once, the way I used to – if I’m on the computer, it’s time to turn the radio or TV off. I still have a lot of email friends, whom I talk to a lot.

After lunch, I may doze off for a catnap – keep in mind, I DON’T take naps! – then I work crossword puzzles and spend more time on the computer. I actually don’t watch TV during the day.

PAT: Lee does a great job staying engaged with life. As a businessman, he always mentored people. He continues that today by coaching people who have their own small business or those who want to start a business. As a SCORE volunteer, he works as a counselor to provide guidance and advice. SCORE stands for: Service Corps of Retired Executives. It is an agency of the Small Business Administration. Lee meets with clients every week in the Flower Mound Chamber of Commerce offices. He also helps to organize monthly meetings, sends out emails, collects RSVPs, and helps the chapter stay on top of things. He does have some problems with this occasionally, sometimes forgetting to add something to a communication. He has decided to ask someone to review the emails before he sends them out so that he can continue to fill this role.

He finds this responsibility very satisfying, since it speaks to his strengths in organization.

Lee also enjoys playing solitaire on the computer – which, by the way, I also find very addicting! He is good about identifying his own frustration when a task becomes challenging. He is able to shift gears and work on something else when necessary, and can then return to the task once he’s taken a break.

Right now he’s working on a really difficult DVD classification system for our collection of over 500 movies – it’s such a monster of a task that we may both need help to get it solved.

LEE: I would rather do it myself! But Pat is great about understanding that I need to do things on my own, and she wants me to do as much for myself as I possibly can.

PAT: Carole also wanted to know if we had made any changes to our diet and exercise. We had already determined that we wanted to be healthier, but we’re doing even more now to take care of ourselves. We prefer our meals to be baked, broiled or grilled – we don’t like fried foods. We are eating more fish these days, and taking extra supplements for omega 3 oils and Vitamin D. In addition, we don’t eat much sugar, and we do each have one glass of red wine with dinner for the antioxidants.

Lee used to have high cholesterol, but in the last several years his numbers have improved and he needs only a very low dose of a statin drug to keep everything on target. From a medical standpoint, Lee remains on Namenda and Aricept, and he feels these have helped him.

LEE: Changing directions for a moment…you may be wondering what kinds of changes we may have noticed so far during the disease process. That’s a little hard to answer, as I originally was diagnosed with mild cognitive impairment – I’m not quite sure when the Alzheimer’s disease became predominant. However, I can give a concrete example.

I still have a group of friends in the neighborhood called the “Geezers”. We go out for lunch once a week at different restaurants. I’ve noticed since my diagnosis that I have more trouble reading a menu – it’s like there are too many choices, which are confusing. My friends know I have some trouble with this, so one of them generally helps me go over the menu and make a choice.

Also, I have trouble calculating a tip now. It used to be, I could do any math problem you can think of in my head – but now, math is an abstract that is very difficult to understand. So, my friends help me out with that, too. Pat and I decided I should just take cash, not a credit card, and it seems to work out fine that way.

I also have trouble with a cell phone these days. It’s harder to remember numbers, so that’s an issue. But I still carry one, so Pat can call me even if I don’t remember how to call her.

I don’t drive any more. Both Pat and I felt that it would be safer for her to drive, or have one of my friends drive when I need to get somewhere. Sure, it can be frustrating, especially when I want to get somewhere in a hurry. It’s also upsetting sometimes to remember that I can’t just go somewhere when I want to – I have to wait until a ride is available. Pat and my friends are great at understanding this and trying their best to take me wherever I want to go, whenever they can.

PAT: Other changes – well, Lee is having more difficulty with word finding. Sometimes he’s able to count to 5, and the word will come. It may be less a matter of memory, and more that it’s taking longer for Lee to process incoming information. He eventually gets there, but it takes longer.

What he mentioned, about being able to calculate tips – the problem is more extensive than that. He actually cannot use a calculator any more. All we can think is that his ability to utilize abstract reasoning is now being affected by the disease.

We know there are eight components of cognition, as taught in The Savvy Caregiver class which the Alzheimer’s Association offers:

  • Memory – the capacity that links the present to the past and provides a sense of connection and continuity to life
  • Language – an essential capacity for communication, both expressed and received
  • Abstraction – the power of thought that allows us to consider the world in non-material, non-concrete terms
  • Organization – understanding relationships between steps which leads to a desired outcome Reasoning – connecting thoughts, objects, events and actions Perception – receiving and interpreting information through one’s senses
  • Attention – the filter we use to make choices among all the competing stiumuli in our lives
  • Judgment – the capacity that allows us to think, abstractly, about a range of possibilities, assess them in terms of our values and the potential outcomes, and make choices that are to our best advantage.
Of these, Lee is having a little trouble with language and attention; a fair amount with abstract thinking; and a moderate amount of difficulty with memory.

His strengths include reasoning, perception, judgment, and organization.

Lee understands what is going on in his environment and within his relationships, and he’s still very much HERE.

LEE: You should be aware that Alzheimer’s disease doesn’t affect everyone the same way. As the saying goes, “If you know one person with Alzheimer’s, you know one person with Alzheimer’s.”

For me, I first became aware of issues when I realized I wasn’t always remembering everything that had happened recently.

The others with Alzheimer’s that I’ve met through Trailblazers are all unique individuals.

Each one has his or her own set of strengths and weaknesses, and they learn to compensate differently.

With Pat’s help, I’ve learned how to compensate to some extent.

Probably the biggest thing I worry about since I’ve received the diagnosis is, What does the future hold? Will I know how to compensate? My own feelings about the disease are largely positive, because I’ve chosen to take charge where I can.

I want to focus on the good things in my life, not because I’m in denial, but because I recognize that life still holds much that is good and worthwhile.

If I had to boil my feelings down to two points, they would be:
I do not want to be a burden to my family I want to be the best that I can be – for as long as I can--and I accept that as MY responsibility.
PAT: My feelings about Alzheimer’s a little different at this point. Of course I support Lee and his vision, and I’ll continue to do so.

I see, looking back, that Lee’s having Alzheimer’s disease has forced me to become someone who DOES, rather than someone who OBSERVES.

I’ve had to learn about goals and objectives and strategies, because this disease has forced me to.

If nothing else, Alzheimer’s disease has given me DIRECTION and PURPOSE. Besides trying to learn as much about this disease as I can, we both volunteer at the Alzheimer’s Association, Greater Dallas Chapter to help make a difference.

Here’s what we want people to know:
Knowing what Alzheimer’s disease is makes a difference. Learning how to help our loved ones makes caregiving easier. Advocating for all those affected by Alzheimer’s disease gives us all a voice. Helping to raise awareness benefits us all.
YES, THERE IS LIFE AFTER A DIAGNOSIS OF ALZHEIMER’S DISEASE AND WE’RE LIVING PROOF OF THIS!!!


Original content Lee and Pat Sneller , the Alzheimer's Reading Room