I’ve spent most of the holidays with several names. I’ve been at times, Tim, my uncle. Then I’ve been “Dad,” along with Amy and Beth, my sisters. A few times, I’ve been Etta, the family dog.
As my mom’s mild Alzheimer’s disease progresses, I’ve learned to live with several names among other “quirks” the disease has brought. Recently, I decided to spend much more time back home to help take care of and spend more time with Mom. It’s also meant getting used to the occasional word salad that comes early in the day or later at night when she’s tired (doctors have termed this phenomenon “sundowning“).
I’ve had to learn the thought patterns associated with questions that, asked a few hours earlier would make complete sense, but much later on seem like non-sequiturs.
And, oh, the odd obsessions.
“Is it raining out?” Mom asks.
“Nope. It’s a little cold, but sunny,” I reply.
“We should check the windows are closed if it’s raining,” she says a moment later.
“The windows are closed, Mom, but it’s not raining. Not supposed to rain today.”
“Oh,” she says.
A few minutes later, after I’ve taken the garbage out: “Is it raining yet?”
There’s also the morning ritual of her asking about the location of her special socks “” special because they’re bright, fuzzy and warm “” even when they’re currently on her feet.
You can read up all you want about being a caregiver to a loved one with Alzheimer’s, but there really is no substitute for figuring it out for yourself. While some of my mother’s new quirks may sound awfully familiar to people with an Alzheimer’s patient in the family, the disease manifests itself differently with each individual. Some have trouble communicating, others will struggle with day-to-day activities like dressing or feeding themselves. In later stages, some sufferers become combative. Others do not.
The National Institute on Aging has published a small document online with information on what to expect when you start caring for an Alzheimer’s sufferer, along with tips on how to deal with the expected and non-expected changes. It’s filled with great information.
Here are a few others, fresh from the trenches:
First, you will need patience. It helps to remember that when you were very young, the same scenario probably played out in reverse more times than you could count. Not only will you need the patience to answer the same question many times, you also may need it when you ask a question, get a response, and have that response reversed right away.
“Do you want lunch?” can bring a “no,” followed a minute later by them asking when you’re going to get lunch ready.
Realize that communication can be tough. Speech is often the first abilities affected by the disease. Alzheimer’s patients can have trouble conveying thoughts. They may mix up words frequently, or have trouble finding the right word. The NIA’s literature has a lot of great tips. Among them, I can attest to these important ones:
- Avoid talking to the person with Alzheimer’s like a baby or talking about the person as if he or she weren’t there.
- Make eye contact and call the person by name, making sure you have his or her attention before speaking.
- Allow enough time for a response. Be careful not to interrupt.
- If the person with Alzheimer’s is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
Routines can be comforting. From bathing and dressing, to eating and sleeping, patterns give your loved one a sense of control, which is increasingly rare for someone with Alzheimer’s.
Recognize that things will be different. Temperament can change. So can tastes. Mom loved chicken soup all her life. Now? Can’t stand it. It’s the same with eggs. Go with the flow.
Above all, give them love. Depending on the stage of their disease, you may not have much time left to spend with them. As frustrating as giving care can be, I’m fairly sure when all is said and done, you’ll wish you had more time with them.
