Darma's Story

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Darma 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.

One day in the summer of 1998, I received a surprising call. It was one of my mother's coworkers saying she was worried. My mom had missed work more than half the days that month. I was puzzled. After talking to a few people, it sounded like she was forgetting to go to work because she didn't know which day it was sometimes. I also learned that her coworkers were covering for her when she didn't do a task. Something was clearly wrong. We had Mom take an early retirement at 63, and my brother and I took her to the doctor to see what was going on.

After an MRI and memory testing, Mom was diagnosed with mild Alzheimer's disease. We were surprised because we weren't aware of anyone else in our family who had it. I thought it was something else, or maybe just that it was part of her getting older.

Looking back, there were many signs that my mother had Alzheimer's disease for years prior to her diagnosis; she'd often repeat questions or repeat herself, and she turned from an organized person to someone who was often sloppy. Additionally, her meticulous housekeeping and personal appearance declined. Her bed went unmade, she put on weight, and stopped getting her hair done.

After we knew what it was, it was easy to spot the symptoms of the disease. One day, Mom was looking for a box and couldn't find it. So, she went to the dumpster and started pulling out bags of trash, looking for it. I found the box inside the house, and told Mom, but she frantically kept looking for it. I tried to stop her, but she was determined and made several more trips back to the dumpster. I was surprised by how focused she was on finding it, despite the fact that it was already found. This odd behavior scared me.

I became more and more concerned about whether Mom was taking her medications while living on her own. My brother suggested that he could call Mom daily to remind her, but that option didn't seem sufficient to me as Mom also takes multiple medications, some of which could be dangerous if doubled. My brother didn't have room to take our mom in, and I didn't want her to go to a nursing home. I felt very strongly that something needed to change in Mom's care and living situation as she wasn't appropriately caring for herself. That's when I said, "It's time for Mom to move in with us."

Having Mom live with us has changed our daily life. My mom has always been an introvert, but now that she's suffering from Alzheimer's disease, she is very reclusive at times. When she's reading her newspaper or watching TV in her room, we almost have to pry her out. It's difficult for Mom to come to terms with being dependent on others. We need to coach her to take care of herself, the same way that you teach a child. Mom's actions and awareness are inconsistent, and it makes the family feel that we always need to be on our toes.

Having Mom live with us has taken a toll on my family. My son is 5 years old, and he gets frustrated when he has to tell his grandmother things multiple times. He says to her, "Don't you remember? I told you that already." I need to remind him that sometimes she doesn't remember, and he needs to be patient and respectful. I invest so much in both my son and my mom, and it pains me to watch them develop in opposite directions — my mother declining and my son blossoming. He's so engaged with the world, while my mother continues to withdraw.

My husband has been very helpful in managing Mom and raising our son. However, at the end of the day, I still feel like the 'jelly of the sandwich', so to speak, taking care of everyone. Sometimes it seems like the harder I run, the less gets done. My life is so busy and chaotic managing my family, career, and caring for Mom; it's hard to catch my breath at times. One thing that's important to me is giving Mom a treatment that works for her. Her doctor prescribed Exelon Patch, and I give it to her once every day.

Because the medicine is in a patch form, I think of it as giving Mom medicine continuously for 24 hours. I can see that I gave her the medicine. We heard about this treatment from her doctor, who recommended that she take it for her mild to moderate Alzheimer's disease. Finding a good doctor who deals specifically with the disease has made a real difference for us. The doctor has been very supportive and provided us with much needed information.

I'm also glad that we're doing something that may help with Mom's overall functioning. Since being on the Exelon Patch, even her doctor mentioned that he noticed less decline in Mom's symptoms. It's these small victories that make a difference for me. She has good days and bad days too. Her doctor said, "Be thankful for good days."

The way that we remember to apply the Exelon Patch is to do it at the same time every night.* This has helped me have a way to know that she was given her medication because I can see it. The only side effect we've noticed has been an occasional redness of the skin. But, this is our experience, so talk to the doctor about the side effects associated with Exelon Patch and what might be the right treatment for your loved one.

Early in 2008, our family made the big decision to move to Tennessee for a job opportunity. So we packed up the whole family: my husband, my son, and Mom. The job has been wonderful, but finding time for myself and getting support has gotten more challenging in a new state. My brother used to care for Mom sometimes when we lived in Indiana, but that's not an option anymore.

As a caregiver and working mom, I have a lot on my plate and it's hard to find time to relax and decompress. I only have a few minutes after my son goes to bed for downtime, although that's usually the time I spend catching up with my husband. To re-energize, I sometimes take my lunch hour to shop or meet my husband for a lunch date. But there are no big pockets of free time. Balance in our life is precarious, and some days I struggle to find it.

Having to care for my mother has changed the way the future looks for us, and has added a whole new layer of unpredictability. We're still working on building a support system in our new town. I've found certain websites to provide useful information and support at my convenience.

I feel like in the chaos of it all, I'm content that the symptoms of Mom's Alzheimer's disease are being treated. I don't know what the future or the next minute holds, but I try to savor every seemingly insignificant victory we have along the way. That's what I'd recommend for others, too, because appreciating the small things can really add up.

Thank you.

This article reflects the personal experience of one person and others can be different. Results and experiences vary from patient to patient. It is best to contact the doctor to discuss what's best for your loved one. Keep in mind that everyone is different, and not everyone responds to Exelon Patch in the same way. Individual results may vary.

This is not the experience for every patient who receives Exelon Patch. It is important to be aware of the possible risks and benefits of Exelon Patch and any drug. It is best to consult with the doctor about what treatment is best for your loved one.

The Exelon Patch is a daily prescription medication that is worn on the body. It is the first transdermal (through the skin) therapy approved for the treatment of symptoms in people with mild to moderate Alzheimer's disease.

The Exelon Patch is released continuously over 24 hours. It stays on during bathing, showering, swimming, and everyday activities and does not need to be taken with food.

*Applying the Exelon Patch

STEP 1: Remove patch from pouch.
Cut the pouch carefully along the dotted line, taking care not to cut the Exelon Patch inside. Then remove the patch from the pouch. The Exelon Patch should not be cut or folded sharply.

STEP 2: Peel off one side of the clear plastic release liner. Bend the patch slightly to raise the edge of one half of the release liner covering the patch. Then peel off that side of the liner. Avoid touching the sticky part of the patch.

STEP 3: Apply patch firmly. Put the sticky side of the EXELON PATCH on the skin (on the upper or lower back; alternatively on the upper arm or chest). Then peel off the second side of the release liner and firmly press down on the patch.

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:

clean, dry, and hairless

free of any powder, oil, moisturizer, or lotion (that could keep the patch from sticking to the skin)

free of cuts, rashes, and/or irritations

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