Alzheimer’s: Signs Along the Way

My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.

What signs did you see that made you suspect that your mom was experiencing memory loss?

One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:

  • Repeating stories multiple times at the dinner table.
  • Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
  • Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.

Mummy-wrapped banana peel from Momma’s purse

  • Asking the same question over and over again.
  • A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
  • Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
  • Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
  • Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.

Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)

  • Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
  • Hiding her checkbooks.
  • Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
  • Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
  • Repeating stories. Oh, I think I already said that.
  • Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
  • A diminished desire to attend church or get together with her friends.
  • Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
  • Multiple cans of Coke begun, but not finished.
Momma can’t remember she already has a can of soda open.
  • Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
  • Inordinate amounts of junk mail.
  • She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
  • She kept renewing her magazines, even if she had YEARS left on the subscriptions.  
  • Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
  • Hiding valuables and claiming they were stolen.
  • Growing frustration with using a telephone or a once-familiar remote control.
  • When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
  • Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).

Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.

Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?

Tuesday’s Tip: Whiteboards

“Aaaarrrgh! She keeps asking the same question over and over again. I’m going to go crazy! How can I handle this?”

Caregivers everywhere know full well that repeated questions are a common symptom of dementia and a frustrating, nerve-wracking, mind-numbing daily reality.

Dr. Natali Edmonds, PsyD, APBB of Dementia Careblazers has some wonderfully helpful YouTube videos which address many helpful topics for those she calls “Careblazers” – those caring for a loved one with dementia disorders. Dr. Natali addresses the problem of repeated questions here, but let me add a few tips from my personal experience related to dealing with my mother’s repeated questions.

One of the best ways to handle the problem is to patiently answer the question and remind ourselves that it is the disease causing the loved one to repeatedly ask the question. I must admit, the everyday battle eats away at my patience and drives me bonkers, with my mother’s hearing loss adding another level of crazy. My husband and I are so accustomed to having to use our loud voices to communicate with her that we sometimes don’t realize when we’re shouting at someone who may be visiting us in our home.

One of the smartest communication tools we have purchased is a simple lap-size white board and a few Expo markers. This little investment has brought great returns in helping answer the questions looping around in Momma’s brain. Yesterday’s question of the day was, “Where am I?” After verbally answering her question a few times, I just pulled out her whiteboard and wrote down, “I live with my daughter Cindie and her husband Wayne. This is our home.” Momma read the answer aloud on several occasions and seemed calmed by having her answer.

A great visual reminder

One of mom’s most often asked questions is: “What am I doing today?” I often use the whiteboard to inform her as to what is happening on a given day, writing this down for her in “to-do list” fashion. For example, if I plan to wash her hair, I’ll write it down as an item on her check-list. Also on the list are tasks she still enjoys doing, like folding laundry and drying dishes. Writing those tasks down on the whiteboard gives her the satisfaction of being able to cross off the task once it is accomplished.

Momma loves it when guests come to visit, but is visibly agitated when she can’t remember their names, repeatedly asking, “What is your name?” Writing names on the whiteboard helps her relax a bit (name tags help too). If children are part of the mix, we have their parents prepare them ahead of the visit for the fact that Mrs. Boyles will ask them the same questions over and over again. Kids always seem to “get it” and are very patient and kind, talking loudly to her and flashing their big comforting smiles at her each time they answer one of her many questions.

Mom writes notes to us too

The road to communication is a two-way street. Mom will sometimes use the whiteboard to ask a question or make an observation. Other times she’ll write down her thoughts, giving me a little window into her concerns. Many times she will write down something she is thankful for, such as the picture you see below. In this picture she is writing a little note of thanks for someone whose visit she had enjoyed.

Well, that’s my tip or suggestion for this week. I’d love to hear a few of your great communication tips! Please feel free to share them in the comments below.