My Mom: Our New Normal

Image by: Lawrence Walters @Lawrencewaltersphotos

When our mom received the diagnosis that the front portion of her brain was atrophying, I was both devastated and also relieved. I suppose that sounds horrible, I know. However, I had spent almost two years trying to figure out what was going on with her, so in a way, it was a sense of closure for me. Over the course of that really stressful couple of years, my entire family became increasingly alarmed by unexplained behavior. I began to notice some pretty drastic changes in her personality. The lady with the contagious cackle and killer sense of humor who was OBSESSED with my kids had pretty quickly morphed into a very quiet, unmotivated, reclusive version of herself. My kids were no longer her obsession. Phone conversations became short and emotionless. At various points throughout this shit storm, I wondered if my mom was reeling from a recent nervous breakdown or plainly, she didn’t care to be around us anymore. I was heartbroken and confused.

Over time I recognized along with my family that she could no longer take care of herself and we needed help caring for her. Almost overnight, she and I did a complete role reversal.  I became the mom and she became my child. Presently, I have two young children of my own and a two and a half-year-old. Basically, we are living for her. Our job now is to make sure she is safe, clean, fed and loved. Silver lining. We are doing all of that and then some.

As a family, we have come together to make sure the woman that pushed all 5 of us out of her vagina gets the best care and treatment in town. We all do what we can, in our own capacity to help her and it has made the most positive impact on her. Our mom tirelessly raised every single one of us. She never wavered in her responsibility as a mother and there was nothing she cared more about in the world than her family. This is our mom. This is what you do. We are her legacy and she is the reason we love as hard as we do. People always say she is so lucky to have us, but honestly, it is the other way around. We are lucky to have her. Caring for her is my honor and I along with my family do it with pride. Our focus is on her quality of life to be the best. I have learned a lot. I have done things I said I never could and now have a broader perspective on what this disease is, what her cognitive abilities are and what she needs to maintain a peaceful existence.

In the dementia/Alzheimer’s world (in our mom’s case, FTD) it is easy to let your loved one sit in front of a TV all day and veg out. Rest assured, June Bug logs a lot of time in front of the TV, because she does enjoy it. However, television isn’t the greatest form of stimulation and it is important to us that she is encouraged to do a little work of her own. Meaning, we encourage our mom to talk and use her brain through the way of games and sensory toys and even a little bit of music. What is that old saying? “If you don’t use it you will lose it.” Essentially, we force her to use it. These are ways to stimulate her brain and it not only encourages her to use her words, these are also activities that can help to pass the time. The days can get long in the world of dementia. The disease is progressing and some of these activities that were simple before now pose different challenges, but as the disease evolves, so do we. We follow her lead, go with the flow, continue to challenge her within reason and love her more than you can possibly love someone.

I shared a list of items and tools that with the help of our caregiving team are used on a daily basis to promote word usage, brain stimulation and in some instances provide a sense of calm. 

Spot It – You may have seen these games in the game aisle at Target or at your local educational toy store. It is a series of cards with pictures. Each card has a bunch of random images on them. Every two cards have one image that matches on both cards. I am still in awe over that. You flip two cards every turn. The person that can ‘Spot It’/identify the matching image wins that round. This game encourages our mom to reach back and use her words. We are tough. If there is a snowman, we wait patiently until she says it or share a hint and then move on.

Dry Erase Board – We use this board to have our mom jot down any words or thoughts she may have and cannot communicate verbally. Sometimes sentences are coherent. Other times we are left trying to break down a message like a riddle. Ultimately, it has provided us with a sense of communication in times when zero communication can be had. It was an experiment. It’s worth getting one to have around.

Adult Coloring Books – The most popular and often used item in June’s toy box. Coloring is considered a variation of meditation and has relaxing effects. June Bug always enjoyed a good coloring book. Every morning her caregiver sends me an image of her coloring. Coloring is currently a part of her daily routine. She loves it. It quiets her mind.

YouTube – Music is HUGE with patients with dementia. When I am with my mom this is one of the things I tend to do with her. It is kind of “our” thing. Thanks to streaming devices, things like the YouTube channel are accessible on TV so I will play a ton of music my mom used to listen to back in the day. This form of therapy seems to have the most profound effect on her. My mom has basically lost all verbal skills. She rarely speaks one or two words at the most. A sentence or question is a banner day. However, when music or music videos are playing, it gets her toe tapping. She will sing along which will forever floor me. Sometimes, a little music session evokes a little emotion, something you don’t see with these types of patients. I have been known to cry and listen while I sing along with her. It’s painfully beautiful. I love her so.

Playable Art Ball – This was one of those nifty little gadgets my aunt brought on one of her visits. We use these several different ways. We will un-snap balls and ask June Bug to tell us the colors. Sometimes we leave all of the balls attached. We have her put her wrists in it and spin it around her arms. We will play counting games. Take them all apart and have her put them together. This is another one of my favorites because it’s versatile. It can be used for both physical and brain activity.

Shapes and Color Flash Cards – Again, a very simple yet effective way to get our mama talking. When she answers correctly lots of encouragement and love. I am all about high fives. My sister Lauren is really into flashing. Anything for a smile and a laugh.

Playable Art: Magnet Relief – This is a magnetic board with many multicolored magnetic tiles. We will spell words with the tiles. Create patterns that we help and encourage our mom to recreate. She likes to arrange the tiles just so. She is particular. It is yet another form of relaxation.

The Mental Blox Game – Another great one discovered by our awesome aunt. Each box is filled with plastic shapes. Circles, triangles, and cubes. Some have patterns. Some don’t. The purpose is to recreate the design that appears on whichever card that is drawn. This one is challenging.

Sand in Motion – This one is awesome. A rotating picture frame filled with sand. It sits right next to my mom’s head when she is lying down. She flips it constantly. It’s soothing and relaxing and she loves it.

I hope to have helped at least one person out there going through this with a loved one of their own. This disease affects so many. Coming from a place that once felt very lonely and scary, I have put my big girl pants on and face this challenge with strength and honor. As Lauren stated perfectly, “We may not have it all together, but together we have it all.”