Thursday, June 26, 2014

A Life Lead By Love

Sometimes I take my mom out, but these outings are becoming few and far between as she progresses through Alzheimer’s disease.

Chinel, Mom’s hairdresser, has been cutting her hair for years. She knows my mom well and has a level of patience and understanding for her that is hard to come by these days. We keep her routine as easy and as simple as possible. Even if she doesn’t outwardly recognize Chinel or remember the salon, somewhere deep inside her she seems to know that she is in a “good” place. Once in a while she will make a comment that makes me realize that all is not lost just yet. “This place, I know…” is sometimes all she can get out, but just this, a spark of recognition, gives me a feeling of accomplishment.

After getting through her last haircut, she was visibly tired. She was not talking about the lady in the mirror. She was not cooing at the pictures of Chinel’s children. Mom was fairly quiet. After a warm hair washing and head massage, she was exhausted.

Soon enough after the haircut, she perked up when I told her that the kids and I were taking her to lunch. This was exciting and she was hungry. Off to what she once called “the best bird in town,” Chick-Fil-A. It was busy. The drive thru traffic was almost out to the street. There was a long line inside. This kind of stimulation, crowds of people coming and going and making noise, can be overwhelming for Mom. I carefully led her to a table, all the while talking with her to help sooth her and help her block out the chaos. There were stares from adults and children.

My kids were wonderful, very patient. We found a table and they sat and talked with her while I ordered our food. I came to join everyone and we talked some more until they brought our food over. The kids are old enough to handle their own food preparation, but my mom is no longer able to deal with food on her own. I placed an unfolded napkin on the table and then put her chicken nuggets on top of the napkin. The contrast of the brown chicken against the stark white napkin is what enables my mom to see her food. With the chicken pieces simply piled in the box, she is not able to recognize what it is or what to do with it.

She can no longer use utensils, so a place where she can eat finger food is a perfect choice. Even with making these accommodations, I still had to place the first piece of chicken in her hand and gently guide it to her mouth. She asked permission to eat and asked if she was doing it right. You see, she still somehow knows she is different, a stranger in a strange world. She needs constant reassurance, so I reassured her that everything was perfect and there was nothing to worry about. More stares.

I got up to grab some more napkins and when I came back my son was helping her with her drink. She was not able to recognize that there was a lid and straw on her cup. She was attempting to drink through her lid. Even after my son had helped her, she frequently was confused and either trying to drink through the lid again or clumsily trying to get the straw in her mouth but instead sticking it up her nose or into her cheek. You can imagine how that drew stares.

She didn’t like her drink. Although she always gets lemonade, this time she did not want it. Up I went to change out her drink.

After a while, we all finished our lunch and it was time to head for the door. The place was packed. Despite me walking her, hand around her shoulder, leading her slowly, step by step, people were not moving. An, “Excuse me,” usually worked, although some I had to tap and ask to move, just to get her out the door. All the while I am navigating her steps, explaining whether she needed to step down or if there was uneven ground for she no longer has very accurate depth perception. She cannot tell if the simple change in tile color is just that or a drop-off.

I have almost learned to tune out the stares, yet I can feel them. The eyes watching, wondering what is wrong. Surely wondering what our relationship is to each other, guessing the reason we act as we do. We have all done it. All of us have stared at people who are different in some way.

Here is what I ask you to consider. People with Alzheimer’s disease are in their own world. That world may include people and things we cannot see, conversations that we cannot hear. They are mostly fine while existing in their world. But the second you approach them, put a hand on their shoulder, or talk to them, they suddenly have to find a way to fit you into their world, a place in which you did not exist a second ago. Take a person with Alzheimer’s to a different surrounding, with lots of activity and noise, and you can multiply that dilemma 1,000 times.

Stare if you need to. Ask me questions if you want to. Offer to help. Be patient, but most of all, be kind. This world, with a mom who has Alzheimer’s, is not an easy place for either my mother or for those who love her. Please understand that she did nothing to deserve this terrible disease. But she has it, and she is doing the absolute best she can to live the life she has. You or someone you love may have a similar life one of these days. We could use some people who understand and want to help instead of people who just point and stare. Live a life lead by love.