I don’t know this woman who refuses to answer me when I ask her something. Who when she does answer uses “I don’t know” as a reply. Many articles about Alzheimer’s disease address the patient’s not knowing those closest to them. That isn’t even the half of it. The fact that my mom doesn’t know me or what I do for her on a daily basis is heartbreaking. But the worst is that I don’t recognize the person in front of me. The spark that was in her eyes, her quirky wit, her generosity, her curious and adventurous spirit are all gone. Vanished into thin air like they were slowly let out of a balloon. I miss the woman who loved to read recipes and sew. I miss the woman who’s eyes lit up when her favorite tv show was on or she got handed a bowl of ice cream. I miss the woman who spent hours weeding the garden and would come in with a bouquet of flowers she’d grown for all of us to enjoy. I miss the woman who would tell me I looked “clean from home” when I got dressed up. I miss the woman who loved petting the dogs more than just about anything else. Now she doesn’t know the names of any of the dogs or whether they are male or female. They love her all the same.
Don’t get me wrong, I want to keep her with me as long as I can. However, when she finally dies, there will be nothing left to mourn. I feel like I’m mourning her a little bit each day. I’m not crying, more like numb at what this horrible disease has reduced her to. Nothing really makes her happy anymore, no matter what lengths I go to. It was the oddest thing that on vacation, she didn’t take a nap once. When she’s home, she usually naps every afternoon and part of the evening. It’s like her body doesn’t even tell her when she’s tired anymore. Or hungry. Or thirsty. I have a bottle of water next to her at all times. She goes days without drinking hardly anything. Then one day she’ll drink 2 bottles in a few minutes.
It’s funny how things happen in life and they change your entire perspective and outlook. I was Judgey McJudgeypants when I heard of people putting their parent with dementia in a nursing home. How could they not look after their own flesh and blood? Well, I guess if the person doesn’t even realize WHO is caring for them, it really doesn’t matter. Why put yourself through the work, frustration, sacrifice of caring for another person who is virtually a stranger? Because I can. Because it’s the right thing to do FOR ME. Because I wouldn’t want to be turned over to the care of strangers if it happened to me.
On a day to day basis, there is enough involved in getting myself ready to face the day. Between hygiene and grooming, it is no easy feat. And I’m pretty low maintenance. Imagine having to remember to comb someone else’s hair every day, even if she’s not leaving the house. Imagine having to test the temperature of food before giving it to someone because they have no “sense” or ability to tell if food is hot or cold until they’ve burned themselves. Even if I give her hot food and tell her not to eat it right away, she will immediately grab the spoon and shove it in her mouth. Same goes for the need to always be cognizant of if the person you’re caring for is hot or cold and dress them accordingly. That means putting a sweater or cover up on when there’s a chill in the air. The Alzheimer’s patient will not tell you they are cold. They won’t tell you when they need to use the bathroom. They will start squirming or moaning and you have to figure out if it’s time to get them to the bathroom or if they’re in pain.
It has become all consuming. I really don’t like talking or writing about it. I don’t even like living it. The times when I’m able to get away because she is occupied used to be my respite from the stress. Now I spend most of that time talking to my hubby about how bad she’s getting and what might happen next. What scenario I’m dreading or what strange thing she just said.
After we were on vacation for a few days, she said, “Let’s go home”. Well, she says this when we’re at home too. It still can’t help but feel like a kick in the gut. Things have now reached the point that I need to accompany her to the bathroom EVERY time she goes. I can no longer send her in and hope for the best. I need to be there to remind her to change her pad, use toilet paper and wash her hands with soap. I need to be there to turn the light switch on at night. The computer games are becoming too difficult for her. We have it set up so that she no longer has to use the mouse, only push the space bar. Even with that she can run into difficulties. On the ipad, if any message pops up, it screws her all up. Also she’s not careful when she hits buttons and will hit anything.
My mom was somewhat of a perfectionist prior to her descent into the Land of Know Nothings. She used to have to have to have her clothes all ironed and everything “just so”. Now the only thing she is precise about is how her toilet paper is folded. I’m not even kidding. It is the oddest thing. I usually fold it for her and hand it to her and if it’s not completely straight and even, she refolds it! She also takes great pains to do it herself. It makes no sense to me since she’s not careful about where she wipes her hands or puts food.
I cut up half of a tiny apple into itty bitty pieces for her on vacation. Then we left to run errands and came back. When we left she was shoveling the pieces in her mouth as fast as she could. When we came back, I found the plate with the cut up apple pieces (all brown) under the pillow on the couch. I wonder if she took them back out of there mouth. A few were on the floor.
This woman could eat steak “without teeth” ever since her teeth were pulled in 1988 and she hated her dentures. Now she suddenly can’t use a knife and can barely feed herself with a spoon. She claims everything is too tough for her to eat. She can eat everything up until the last bite. Then she leaves it in her mouth chewing on it FOR HOURS unless we have her spit it out. I’ve tried to ask her why she can’t swallow the last bite when she ate the rest. She doesn’t answer. If I ever badger her for an answer and say, “You have to answer,” she mockingly replies, “You have to answer!”
People tell me she’s lucky to have me. My husband says he wishes she knew everything I did for her and appreciated it. So do I but it’s not going to happen. We never did have a talk about the possibility of her getting Alzheimer’s. At first it just seemed like typical loss of memory as happens with aging. Then it got worse and after her diagnosis, it seemed already too late to have a conversation about it. The concept was beyond her grasp already. I don’t know if it would’ve changed anything anyway to talk about it. We used to have conversations about EVERYTHING. I can’t imagine how we never got around to discussing the memory thief and personallity burglar that is Alzheimer’s.
I sometimes wonder if she’s lasted so long because I take such good care of her. None of us know when our expiration date is but we certainly don’t expect to live past it. We do the best we can and hope for the best. Whatever other cliches we have handy, we use those too. My dad’s aunt, who was ancient when I was a kid, used to have a saying she said so much, she wore it out. “That, too, shall pass.” I don’t doubt it for a minute. Mom’s memory may be mush but I still remember the love we had between us. It’s hard to love this stranger but I still deeply love the mother I had.