In horror stories, usually the demon has to be invited in. With Alzheimer’s, no invitation was issued, nor was an RSVP received. Talk about an uninvited houseguest. This one comes and never leaves until it’s sucked the life out of you. Most demons take your soul but Alzheimer’s steals your brain, not just the mind that holds memories but the entire organ including the first things we learned how to do to function. Like the ability to comprehend speech, let alone answer. The ability to form words or sentences. To sign your name. To recognize loved ones. To recall the name of things. This demon alters the possessed’s personality and hijacks their emotions. Nothing can make the person happy or sad any longer. They just exist to hold the host demon inside for it to feed off of…
Everything gets exponentially harder daily. Yesterday was bath day which is always the hardest. She doesn’t listen to me hardly at all anymore. I don’t think she’d listen to anyone else any better. It’s gotten to the point where I can’t leave her alone much. Obviously I have to at times, just to cook meals and do household chores. I can’t trust her to follow through on things I tell her. Like I used to just walk her to the bathroom (holding hands) and leave her, maybe check on her once while she was in there. Now I have to walk her and stand in the doorway while she goes. I have to keep track of IF she went or not since if I ask her if she went, she says, “I don’t know.” I have to tell her to take her soiled pad out of her underpants. Even if she sees it’s soiled, she doesn’t think to do anything about it. I have to give her a new one. I have to open it for her and watch that she puts it in her underpants correctly. I keep the Poise incontinence pads under the sink in the downstairs bathroom. She used to know to open the cabinet, reach in and take one. Now if I’m not with her, she may take the soiled pad out and not replace it at all. One day I left one on the sink and she went earlier than usual without me being home. She put the entire pad still wrapped in the plastic, inside her underpants. It’s folded into thirds with a plastic on top. I have to hand her toilet paper or she won’t use it. I have to count how many times I hand her toilet paper (5 in a row and I have to flush) so that the upstairs toilet doesn’t get clogged and I have to plunge it. I have to stand by and make sure she USES the toilet paper and doesn’t just set it on the sink or put it on top of the pad in her underpants. I have to make sure she wipes enough and in the right area and doesn’t give herself an infection. I have to watch and make sure she puts the used toilet paper IN the toilet and not in the sink, or on the floor. She often wants to hand it to me. NO THANKS.
You’d think this would be ENOUGH. But I can’t leave the room yet. I have to tell her to flush the toilet. Or sometimes I do it for her. It’s not always worth shouting about. She’s hard of hearing so I feel like when I do address her I’m always shouting. The less reaction she gives me, the louder I yell. It’s exhausting. Then I tell her to wash her hands. You’d think I could walk away then.But no…I have to make sure she uses soap. And then stick around to show her where to dry her hands. EVERY SINGLE TIME. She doesn’t go to the bathroom as much as most people so I should count myself “lucky”. She goes in the morning when she gets up, before lunch, before dinner and at bedtime. Occasionally, there’ll be another time. She doesn’t drink much water and then when the mood strikes her, she’ll drink 2 full bottles in a row. I still have trouble catching her always trying to stand up from the toilet without wiping or with feces hanging out of her. The struggle is real.
Some of this sounds atrocious and I probably shouldn’t even put it in print. Maybe the worst thing that bothers me is her lack of interest in EVERYTHING. She doesn’t care what she eats, what she watches on tv, what she wears, you name it. I no longer see her smile ever or get any joy out of life. She sits in her recliner in the living room and I tell her to “put your legs up”. She lifts them together about 6 inches off the ground. It’s like a bad joke but no one’s laughing. I have to tell her to “use the handle”. EVERY SINGLE TIME. Some days she reaches for it and says, “I can’t”. She doesn’t even really try. It’s the worst to do for someone else who doesn’t try for themselves.
She was always somewhat demanding and difficult. I guess I didn’t really pay that much attention to it. She used to boss me around, “Cut my hair!” or “I want ice cream!” I used to be annoyed because I felt like it cut into my time. Now if only she could express what she wanted. As it turns out, my time is not my own anyway.
I’m on day 9 of one of the worst colds I’ve had in my life! I haven’t had a cold this bad in over 20 years. Back when I used to get them like this, I was working 3rd shift (nights) at the Post Office. I would stay in bed for at least 3 days to recover. Now I can’t even take a nap. I have someone to care for 24/7. Possibly the worst is that she has no comprehension that I’m sick. She doesn’t acknowledge it or have any compassion for me. Now hubby has caught the cold. He’s about 2 days behind me. I’ve been very diligent with washing hands and trying to keep from infecting my mom since a cold like this could kill her. I wouldn’t wish this on anyone! Not the cold and not Alzheimer’s!!!
Even Mom playing on the computer has become a challenge. We have it set up so she only has to push the space bar on the keyboard to spin the slot machine games. If she hits the wrong button, sometimes a grey box or a white box will come up. You have to tap or move the mouse to get it to disappear. She used to be able to move a mouse, now she doesn’t know what a mouse is!! I have to get up from wherever I am and fix it for her every time. Sometimes she can go all day without hitting the wrong thing. Other days it will come up every few minutes. She won’t call to me if I’m in the other room to tell me either, so I have to walk in and check on her every few minutes.
It’s similar to every day I have to hand her a kleenex and have her blow her nose. I can usually hear if she’s got snot in her nose so I try to get to her before she does things like sneeze everywhere or wipe snot somewhere. I have to stand there and make sure she blows her nose or she’ll just take the kleenex and fold it up and lay it somewhere. I can’t just tell her “the kleenex box is on your left” because it doesn’t sink in.
Mom falls asleep a lot and doesn’t know if it’s time for bed or time for dinner. When I take her to the bathroom before dinner, she often tries to go upstairs to bed. I have to tell her no and get her moving the other way. I’ve been cooking a lot (as usual) and made a couple of pork roasts. I got out 2 crockpots and prepared a whole bunch of veggies and cooked them up so I wouldn’t have to cook every single night. I still end up making more veggies later and improvising in different ways using the roasts. One night we had a frozen pizza and she hates them. I’m not too fond of them either but I was sick and didn’t want to fuss. I asked her if she wanted pizza or would she rather have a small scoop of cottage cheese for dinner. She said, “I don’t know.” So I gave her the cottage cheese and she ate it right up. I guess I could start making soups and things for her. It seems more that she’s forgotten how to swallow than anything else.
I started babysitting when I was 11 years old. I took a babysitting course from the Red Cross at the YMCA and got certified. I learned CPR and all that other good stuff. I was gungho to make money. I got jobs right away. Nobody wanted to pay anything. I guess 50 cents an hour was the average back in mid-1970’s. I had a young couple who lived next door who even had me babysit when they moved way across town. They paid like $1/hr. too which was great. Then I had a nightmare babysitting job for a woman across the street. She had rented from my dad the apt. next door and then later moved across the street. She was divorced and was a waitress at a chinese restaurant. She had one child who was a demon! This child would not listen at all. As soon as you got done telling her something, she would ignore you. I would say she was around 5 yrs. old. I stayed with her and played with her all day from mid afternoon until her mom was supposed to be home at 10 pm. We were in the house (while it was still light out) and I went to use the bathroom. Just a quick pee and I came out and the child was GONE. I wasn’t worried the kid was abducted or anything but how would I find the child? It was a girl and I was frantic. I went out looking for her with no luck. I called my dad for help. My mom was working. I wouldn’t call my dad unless I had no other choice. He helped me drive around the neighborhood and we found her. This child was impossible to control. I put her to bed and she kept getting up again and saying she wanted me to make her bacon. That sounded crazy to me. The kid kept carrying on. the mother called to say she’d be late and to go ahead and make the kid bacon. She said she’d be home by midnight. Then she never showed up until 3:30 am and I think it was a school night. Then she paid me what amounted to less than 25 cents an hour!! She called me later to babysit and I told her NO. She asked why. I told her she didn’t pay enough for what she put me through. No amount of money is worth that kind of aggravation.
It may seem odd that I’ve brought this up but I think of this scenario every single day. I have the same helpless feeling with my mom that I did with that girl I babysat. I get my mom to the upstairs bathroom and sit her down on the toilet and then I quick RUN a few steps to her bedroom and get a diaper and her glasses case and hearing aid container. I tell her to sit with her hands together (so she doesn’t pick her leg) and wait. Before I can get back to the bathroom, she’s trying to get up! I scream, “NO!” and get her sat down. Then I RUN to her bedroom, pull back the covers and put down the bed pads. By the time I’m back, she’s trying to get up again or HAS gotten up. Without wiping. She doesn’t know enough to pull up her pants so may just be standing there. What I’m living now, makes me relive that type of unpleasantness from that babysitting nightmare.
I’ve been trying to figure out WHY I’ve gotten into collecting religious artifacts at all, let alone during this time in my life. I’ve come to believe that it’s because I’m trying to ward off the demon Alzheimer’s. Not only am I afraid inhabited my mother, I’m afraid he has his sights set on me. In horror movies, often the demon leaves one host only to make himself at home in another nearby being. Scary stuff but nothing compares to reality and how frightening it is to watch someone disappear before your eyes.
No amount of wishing, praying or hoping can get the demon to leave. Alzheimer’s has taken root and is here to stay. No exorcism can remove the demon from our lives. Today I was counting days of the week to see how long I’d had this cold. I go, “Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday, Eighty, Ninety, One Hundred…” I’m not even kidding. I caught myself and did it wrong a total of 3 times. I can’t even make this stuff up. I’m going to say this is the cold messing with my head (even though I’ve taken no meds for it) and not freak out that I’m losing my mind as well.
I have finally come to terms with how people can put a loved one in a nursing home. I honestly couldn’t see it before. I’m still not going to do it but at least I understand. People must feel that one life is enough to sacrifice and lose. By being the caretaker of an individual with Alzheimer’s, you are giving up your own life. So basically 2 whole lives are wasted, not just one. I’m assuming this is my purpose in life since I haven’t accomplished much else. I’ll just continue to take it one day at a time since looking beyond that is overwhelming.