What is Different?
When you live with Alzheimer's, you and your family always ask questions. Like, did I take my pills today? Did I eat breakfast? What can I do to help? I find myself asking a lot of questions about the situations I find myself in.
Many of you know that routine is extremely important to those living with dementia. Many don't realize how important it is until they are taken out of their element. I try to take every situation and analyze it the best I can. I am trying to train my family to do the same, but it is much harder for them. Hopefully, some of these tips will help others think about situations differently.
Family vacations are different
My husband and I just returned from the beach with my son, his wife, and their two children, ages 2 and 5. As much as I love them, I knew this would be difficult.
My son and his family live in a different city, so it is difficult for them to understand what I am going through. But as I began to think about the trip, I realized that some things would have to be dealt with upfront. My big thing was my "quiet time."
Quiet time with Alzheimer's disease
I need a lot of time by myself. Unfamiliar surroundings, noise, and lots of people in a tiny space confuse me. There is too much going on — too many stimuli to deal with at once. So, negotiating my quiet time was something I needed to do upfront. I needed to let them know that I wasn't always going to do the things they wanted to do, I needed to go to bed early, and saying no to doing some things with the kids was ok.
When the kids got too noisy, I needed to excuse myself, with no one taking offense. The vacation was a week-long, but we decided only to stay five days. That gave them some family time without us, and five days was just long enough. Setting boundaries before an activity makes it easier for everyone than arguing about things when you get to your destination.
The same is true for other things. Think ahead and figure out what will be different in your situation.
What is different with Alzheimer's?
If someone is visiting a loved one with dementia, let them know ahead of time that it is taxing on your loved one and to limit the time they visit. That is a "different" experience for your loved one, which can take a toll on them.
Think ahead if you are taking a loved one out to church, a restaurant, or a drive. Is it going to be noisy? Is it going to be cold or hot? How far will they have to walk? If it is a totally unfamiliar place you are taking them to, be by their side all the time. It is very unsettling to go into an area that is foreign to them.
Are there going to be lots of people there that will get them overstimulated? You might think getting them out to socialize is great, and it is - to a point. Gatherings of people can be pretty overwhelming, and most likely, the person with dementia cannot tell you that it is overwhelming, so you need to watch for clues. Don't tire them out.
What seems normal to you is not customary to those of us with Alzheimer's.
Does humor help you cope?