The first time this happened was when we were sitting in the waiting room of the doctor's office for her baby brother's six week check-up. A very "busty" woman walked in and checked in with the doctor next to ours. Aubrey took one look at this voluptuous woman, and with wide eyes, turned to me and declared,
"Mommy, she has really big boobs!!"
The next incident was the following day, when I took her with me for my own check-up. We were in the elevator, heading up to the third floor of the doctor's office with a very friendly, older, and heavy set lady with a walker. She made some conversation with Aubrey as we went up and when the door opened, we politely let her step out first. As she made her way out, her back end facing us, Aubrey exclaimed,
"Mommy, her butt is so big!"
A few minutes later, after we had checked in with the receptionist, and as I hid myself away from this dear lady in the waiting room to prevent further humiliation, Aubrey noticed a man sitting across from us.
"He is WAY bigger than you, mommy," she said, pointing her tiny finger at the man.
Two days later, we stopped by Burger King for dinner. A young, black girl stood in front of us in line. Aubrey looked at her for a couple minutes, then told me (and the rest of Burger King),
"Mommy, her skin is brown!"
After four incidences in the course of a few days, I was ready to hide away in my house and never take her out in public again. I was shocked and mortified at the words that came out of my daughter's mouth. After each incident, I took the opportunity to explain, as best I could to an innocent three-year-old, that the things she was saying were not appropriate and could hurt people's feelings. Try as I might, the fact of the matter is simple: kids have no filter!
People with dementia are very much the same: they have no filter. At least this is the case with my mom's form of dementia. Whatever is on their mind is on their tongue. The difference with children and with dementia patients is that children are teachable. Eventually they learn how to behave. Lucky for me, my daughter is smart; after this long and embarassing week of incidences, we had some talks and she came to understand that those comments make people feel sad or embarassed. A dementia person will not understand this concept, no matter how hard you try to teach them how to behave properly!
The more the disease progresses, the worse it becomes. I find myself (as does my family) tense up a little bit when we take her out because we don't know what-off-the wall thing she will say or do. A few weeks ago, I took her to the grocery store. I, of course, picked the shortest line to check out. Mom was disappointed because she loves Beverley, a cashier who has been there for years. Not to worry, though. She made sure to call to Beverley from across the store (as everyone in her line observed).
"Beverley! My spiritual sister!" She continued after she checked out and quickly walked over to Beverley, "I really believe that you are my spiritual sister, too. In my religion, we're all brothers and sisters too so you are like my sister spiritually."
Sometimes, while we are checking out, she will bring up random topics or completely ignore the cashier's questions or conversations altogether. While she can still communicate what is on her mind, she can't comprehend much of what is being said to her. Most times, I find myself speaking for her when a cashier or sales representative is asking her a question. I think most times people can figure out that there's something not quite right. Other times, however, I get the look that says, "I wasn't talking to you." This happened one day at Kohl's. Mom was trying to use her coupons as she checked out. She had two coupons: one was a 15% off when using her Kohl's card, the other was 20% off a purchase of $100 or more without using the Kohl's card. Of course, she wanted to use the 20% off, but she didn't comprehend that she couldn't use her Kohl's card for it (and she was adamant to use the Kohl's card). Aside from the card issue, mom was using a combination of gift cards along with the credit card, so her total after the gift card was less than $100. Therefore, she couldn't use the 20% off coupon at all. The cashier tried explaining this to her, but mom couldn't make sense of what she was saying. I then tried explaining it to her myself with the same result. I finally turned to the cashier and told her that she would just use the 15% off coupon with her Kohl's card. The cashier ignored me and turned back to my mom, seeming a little flustered that she wasn't "getting it". I finally interjected and said in a low voice,
"She doesn't understand what you're saying, she has dementia."
The cashier's attitude immediately changed and she turned her attention to me, listening to what I had prompted her to do. She was patient with mom through the rest of her transaction.
Even though my mom didn't hear or understand what I was saying to cashier, I still hate to say it in front of her. Who knows what she hears and understands deep down? And I don't want her to feel embarassed or stupid.
In Susan's book (I've mentioned her book before, you can read that post here), she talks about the "oops card". Basically, it's a card that you hand to people while out with your loved one explaining that they have a disability and can't understand you. After this and several other incidences, my family and I decided it was time to make our own "oops" cards.
There are a few ways to skin a cat. The suggestion Susan made in her book was to go to the association for frontotemporal lobe dementia. There are templates that you can use and print them out on cards at home, using premade cards, such as these:
The other option is to order your own through a printing company. I used vistaprint, since they are free (aside from shipping). And they also have cute templates :) Our cards read,
"Please be patient with my companion. She has a brain disease called semantic dementia, which makes it difficult for her to communicate and understand what you are saying."
I feel like this is a less embarassing approach for my mom while we are out, to help other people to understand and be patient with her while we interact with them. The only regret I have is not addressing the behavior aspect on the card. One of the template suggestions from the AFT is to write "(s)he is not drunk or on drugs, (s)he has a disease..." With the embarassing behaviors, and stares from onlookers, this bit of information might have been helpful to include on the card. Oh well...next time.
My hope is by handing out these cards, people will be more patient with my mom. But along with that, I hope to raise awareness on this disease. How many times are we out in our daily lives and see people acting a little "off"? Do we ever stop and wonder if there might be something more to their strangeness, such a disease that alters their behavior? Knowledge is power. As is awareness.
So this whole post got me to thinking...I wonder if I can get these cards made up for my kids??? ;)
I want one for my kids too! :) You seem like you are doing such a good job trying to help your mom. She probably doesn't think to thank you now, but someday she will. You are a strong woman Cassandra!!
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DeleteWhen I worked @ Altura, we had a member who clearly had some kind of dementia. She would come in on a weekly basis, sometimes several times a week or even several times a day. She had her favorite tellers and FSRs, who would try to avoid her, if possible, as she would ask them to go over the same information, forgetting that they already gave her that information earlier on. Explaining things to her could be a task, and sometimes she would make embarrassing comments to the tellers she liked. She had even backed into a couple of people's cars (she obviously should not have still been driving, but she was). Reflecting back, I wish I had known then what I know now. I wish someone had me, and my coworkers, aware of her condition. Maybe we all would have been more patient and understanding.
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