Nancy's Story

Nancy D. is part of the Exelon Patch Ambassador Program, sponsored by Novartis Pharmaceuticals Corporation. She has chosen to share her story of caring for a loved one with mild to moderate Alzheimer's disease.

When I met him, Tom impressed me with his intelligence. We talked for hours on our first date and that connection has sustained us through our many years of marriage. So, a few years ago when I noticed he was writing notes to himself in order to remember things, I was worried. I asked his doctor about memory problems, which I thought might be a side effect from one of his medications. It didn't occur to me that it could be Alzheimer's disease.

Our daughter Amy, who lives near us, didn't immediately notice a problem with her father, Tom. Until one day, when she was driving with her father somewhere familiar and he didn't know which way to go. That was a defining moment. She said to me, "Mom, he's not asking, 'which way?' to be polite, he really just didn't know where we were." That's when Amy became as concerned as I was.

In late 2007, my daughter and I took Tom to a memory disorder center. The doctors ran tests called "mini-mentals." He confirmed that Tom had mild Alzheimer's disease. As devastating as the diagnosis was, on some level it was actually a relief to know what the core of the problem with Tom was. Tom didn't want to talk about his illness, and he still doesn't. But I have Amy to talk to. She is my rock.

Going to a support group also helps me. I see that I'm not alone with some of the challenges I face. I've added more structure to Tom's schedule, like telling him, "Go take a shower and then we'll eat dinner, " so when he finishes one thing, he'll know what to do next. Finding ways to cope are the only things that make my daily life manageable — the hardest part is not knowing what to expect next. It can be overwhelming because it's often back to square one and I don't know what Tom will be able to do, or how he will behave from one day to the next. For me, managing Tom's symptoms is a daily challenge of reinventing the word "patience."

I learned a hard lesson about Alzheimer's disease after a recent vacation, which we took with our kids and grandkids to the Pacific Northwest. People with Alzheimer's disease don't deal well with change or unstructured time, so Tom was at loose ends on the train ride that we took, getting up often, not knowing what to do. When we returned home, my daughter met us at the train station and he told her about the trip. He said, "You should have been there." That comment troubled her — because she had been on the trip with us, she'd just flown back early. It hurt me too because I'd spent so much time planning the trip so we could have a wonderful family memory, but it was more stressful than I expected and I don't know if Tom's memories of the trip will remain for long. The lesson was that we need to keep things simple and routine for Tom.

It's the big things that are the hardest for me to deal with, though. I'm terrified about what the future may hold for us. The grieving process begins as soon as your loved one starts to slip away. You lose them long before they pass away. I'm angry, and I hate this disease. I cry, because Alzheimer's disease is the saddest disease I've ever heard of. It's taking one of the dearest people I know away from me, and in the process robbing him of who he was.

We have found some ways of coping. Initially, Amy helped find resources to get Tom diagnosed, and his doctor prescribed Exelon Patch for Tom's mild Alzheimer's disease.

We know we can't stop the progression of Alzheimer's disease, but I do believe that Exelon Patch gives us a sense of "doing something" about a very negative situation. Since being on Exelon Patch, I've seen very little change in Tom and this is good, because his symptoms generally aren't getting worse. The doctor even mentioned some improvement in several areas of the tests he took last time. Of course not every person will have these results. The medicine is delivered continuously through the skin over 24 hours. The fact that he is being treated has given us sense of relief. We take things one day at a time on this journey together.

I like giving Tom the Exelon Patch because I can see it! I peel off the old patch and discard of it, and then I put a new patch on Tom before bed, as the doctor directed me.* It stays on through showers, swimming, and the gym. Tom hasn't experienced any stomach related side effects that I have noticed. [In a study the most common side effects were nausea, vomiting and diarrhea.] Although we were expecting some skin reactions because that may be typical with patches, we haven't experienced any with Exelon Patch. But, remember this is just our experience, so talk to the doctor about the side effects associated with Exelon Patch and side effects the person you are caring for on Exelon Patch may experience.

My advice for other people dealing with Alzheimer's disease is to be as prepared for the emotional ups and downs as you can be. You probably will be angry and sad at times. It's a natural part of the process. Contact friends, share your feelings, and vent. You may be upset, frustrated, or sarcastic at times. Forgive yourself. Anything that helps dealing with Alzheimer's disease is welcome, in my opinion.

Take a deep breath, and do whatever you can to maintain your sanity and well-being. We make time to exercise, because it's a good outlet mentally and physically, for both of us. And, for me, that means getting out of the house a few times a week to volunteer. I get dressed up and get out of my head for awhile. I know that I need to take care of myself so that I can take care of Tom.

Sadly, as your loved one with Alzheimer's disease slips away, you will likely experience grieving. It's a devastating disease for all of its sufferers. For me, the experience of living with Alzheimer's disease is steadied through knowing that Tom has good doctors and nurses caring for him and giving him his medicine. I'm also taking time for myself, finding support in my daughter, and setting my priorities straight.

The EXELON PATCH can be applied in three steps. It may be helpful to develop a routine for applying the patch. That way, it's easier for you and your loved one to get used to applying it.

Before you apply EXELON PATCH, make sure your loved one's skin is: