Alzheimer's Disease: When What You Don't Know Can Hurt You

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Perhaps you've heard the phrase, "What you don't know can't hurt you." While that may be true some of the time, it's not always accurate in Alzheimer's disease. I've worked with thousands of people impacted by Alzheimer's or another type of dementia, and there are definitely things that, as caregivers, they wish they would have known earlier about dementia.

Here are the top 8 things caregivers wish they would have known:

1. I wish that I had known that I wouldn't win the argument.

"If only I had known that I couldn't change his mind, I wouldn't have spent so much time being angry and arguing with him. I didn't understand at first that dementia could affect his personality and behavior. But now I realize that unless it would be harmful for him, the arguing isn't worth it."

2. I wish I had known that if I ignore it, it wouldn't go away.

"I wasted time in the early stages of her symptoms, hoping that I was overreacting or trying to convince myself that it was just a phase. I wish I would have just scheduled that scary appointment with the doctor earlier. Even though it was hard to have my worries confirmed with the diagnosis, it helped us know what we were facing. I also found out that there are many benefits to early detection of Alzheimer's and other kinds of dementia, including that medications may be more likely to be effective."

3. I wish I had known that too many medications can make people feel and act like they are more confused.

"One day, I brought a list in of my dad's medicines in to the doctor at his appointment and found out that two of the drugs he was on could be causing him to be more disoriented and forgetful. The doctor also said that the vitamins and supplements I was giving Dad to try to help him could affect how his medications worked.

I wish I had known earlier that drugs that are supposed to help people could also hurt them because of the negative side effects or combination with other drugs. The doctor decreased his medications and even though my dad still has dementia, he's doing better than he was before."

4. I wish I had known about validation therapy earlier.

"One day, I realized that instead of becoming frustrated with her when she kept calling out for her mother, I could take five minutes and ask her to tell me about her mother. This calmed her down and made the day so much better for both of us."

5. I wish I had known that it's not too late to try to improve brain health.

"I think we just kind of gave up after we heard mom's diagnosis, like it was too late to do something about it. I know her dementia won't just go away, but now I've learned that there are still things we can do to help her enjoy an improved quality of life. Physical exercise and mental activity both can help her function better, even now."

5. I wish I had known earlier how helpful it would be to have some help and support.

"I was carrying this all by myself, and I was determined to do it well and do it alone. I had no idea how exhausted I was, and how helpful it would be to have some home health care services come into our home and help us."

6. I wish I had known how important it was to have the difficult conversations about medical choices.

"It was hard to think about an uncertain future after my sister was diagnosed. But if we would have had the difficult talks with her then about a power of attorney for medical decisions and a living will, we would know better now what her wishes for medical care are now. I know it might have been uncomfortable, but I would have had more peace of mind now if I didn't have to guess what she wanted."

7. I wish I had known that she really couldn't help it.

"I didn't want to believe that she was that bad off- that she was that confused that she couldn't get dressed and ready on time in the morning. So, I assumed that she was choosing to be difficult just to dig her heels in. I would've been more patient with her if I had understood that it was the disease and that she really wasn't being stubborn or manipulative."

8. I wish I had known that 20 minutes later can feel like a whole new day.

"I finally found out that sometimes, if he is agitated and fighting me about brushing his teeth, I can give him a few minutes to calm down. I've come back to him later and he's in a totally different mood, and is agreeable to brush his teeth. Of course, this doesn't always work, but it sure helps."

Source:

Conversations with many people over the years who are coping with the challenges of dementia.

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