The title of this is misleading. People say that when they don’t know what to say. Something has affected them and they wish to express it and don’t know how to choose the words. In my case, there are too many words. Oh, so many to describe what I’m feeling but none of them suit me.
Things have been progressing ever so slowly with Alzheimer’s as they tend to do. The gradual decline has been at a snail’s pace for over 3 years. Sometimes more rapidly than others but always leveling off quickly and staying somewhat manageable. I know time passes when we’re not paying attention but this is ridiculous. All of a sudden, with no notice, helping my mother has become a full time job. Obviously, I noticed that more and more time has been devoted to doing tasks for her. But I was still able to squeeze in a few other things a day. I had been selling online here and there when possible and writing blog posts when I found myself with a block of time. It all became too apparent over our Thanksgiving vacation. We are currently on Christmas vacation which just reinforced my thoughts on this.
I will try to write a post soon about the vacations but it certainly was no break for me. This post is specifically about Alzheimer’s and what I’ve been dealing with lately. As always seems the case, I need to get what I’m experiencing out of my system by sharing it on here. I have no one else to talk to about it and it lightens my burden to tell my story.
Less than a week before we left for our Thanksgiving vacation, Greg and I had been out of the house for a few hours going to estate sales. We came home to find large turds on the kitchen floor, down the stairs and a mess in the bathroom. Having 3 dogs, my first thought was that one of them had had an accident. But our dogs are good and don’t go in the house ever. It didn’t take us long to figure out it was Mom. I found her sitting at the computer in pants that she had crapped all the way down to the ankles in. She had her dirty pad taken out of her pants and it was sitting next to her on the top of the desk. Ack. That sound you hear is me wretching. I’m not going to go into the detail of what it involved to clean her and the house up. But a general summation is I took her down to the bathroom and then made several trips upstairs to get her clean underpants, pants and a shirt plus a washcloth to clean her with. Then I had to wipe down the computer, the mouse and desktop with isopropyl alcohol. I had to take her dirty clothes down to the laundry tub and rinse them out. Then run a load in the washer extra long to deep clean and sanitize the clothing. Not to mention cleaning the floor and throw rugs. It sounds like I went into detail but I didn’t. I left out me trying to have a conversation with her and she has no clue what she’s done. Or what’s happened to her. Or that she’s covered in feces. Or why I’m upset. Or why I’m skeeved out.
Anybody who’s read this blog for very long knows this isn’t the first time I’ve had to deal with this. It most likely would’ve happened even if I was home and it’s very likely the beginning would have played out the same way. She would’ve lost control of her bowels as I was getting her to the bathroom. But I would’ve been home to clean her up before she could wander back upstairs touching everything. There is no way to regulate someone else’s bowels when they can’t give you a clue that they have to go.
I made a huge deal a little over 2 years ago when I had to wipe my mom’s ass for the first time. I wrote a blog post called “The Gift Of An Asswipe”. I was appalled. Little did I know that that was NOTHING. Sometime in the last year, more than 6 months ago, I’ve taken the job on full time. I came to the realization that it wasn’t worth it to “let” her do it and make such a mess that I’d have to clean her hands with a toothbrush and clean the toilet seat and everything around her. At that time, I decided to just buck up and do it. It’s basically like wiping a baby’s ass but bigger, right?! Well, I don’t have a baby but I now have a toddler. Mom seems like a toddler so much of the time. So Mom has bowel movements but not daily and she doesn’t like to sit on the toilet for any length of time. I’m like a labor coach but instead of cheering for the baby to come out, I’m cheering for the shit to come out. Everyone’s quit reading by now but that won’t stop me. I’m going to continue so that someday I can remember exactly what I lived through. So she’ll have a piece of shit hanging out of her and say, “I’ve got to get up!” and start to get up. I have to stop her and say, “You’ve got shit hanging out of you. You can’t get up until you push it out!” Then she says her line again and I repeat mine, ad nauseum. The other part of our “conversation” is me telling her to “PUSH!” (repeatedly) and her saying, “I can’t!” (repeatedly). UGH. When she gets it out, I cheer. That is what my life has been reduced to. And if she doesn’t go in the morning, I have to worry and wonder all day when/if she’ll need to go. I’ve had to do an external “digital stool removal” and also had her crap in my hand while I wiped her. It’s futile to ask, “Are you done?” because she’ll answer the opposite of the real answer or else, “I don’t know.” There is no way I’d put her on stool softener since like most normal people, she can sometimes go easily or before she’s ready.
I know she needs more exercise but she’s really only capapble of walking from one room to the other a few times a day. I try to make sure she stays hydrated even if it means she’ll end up wetting the couch or bed. Drinking water keeps her bowels moving. She doesn’t like to drink and I have to bug her to drink several times a day or she’d drink nothing. She’s gotten so she wants me to open the water bottle and pour it in her mouth. There is no happy medium, once in awhile she’ll drink 2 or 3 bottles of water straight down. Even if I tell her not to drink so much, she obviously doesn’t listen to me one iota.
On Tuesdays I give her a bath which I’ve also written about at length. I still try to get her to wash as much of her body by herself. You can tell she wants me to do it. I do some but want to keep her being able to do SOMETHING. She’s still able to get in and out of the tub which at 4 months shy of 95 years old is amazing! I still worry and dread every bath day that that will be the day she won’t be able to get out of the tub. Especially when Greg is gone out of town and I fear having to call the fire dept. because I can’t lift her out myself.
I was rereading a few of my Alzheimer’s posts and didn’t realize how bad things have been and for how long. On vacation, Mom no longer asks, “When are we going home?” She no longer cares for sweets like she used to. She used to love candy and wanted some every day or some dessert. Now if I ask her if she wants some, she usuallys says no. She hasn’t been able to use the mouse on the computer for over a year and even using the space bar on the keyboard, she still manages to hit the wrong button and get herself knocked out of her slot machine game. I have to check on her every few minutes. Some days she can paly a few hours on the computer and not screw anything up. Other days, she hits the wrong button 25-30 times. I patiently explain to her what to hit each time and it doesn’t sink in.
A month or so ago, I was lamenting to her how I don’t have any friends. I don’t even remember why now. Out of the blue, she says, “You’ve got me!” which should have been touching but it was just a sore reminder of the friend she used to be to me. I said, “Do you talk to me?” and she took a long time to answer and then said, “Well, no…”. That’s been the biggest conversation we’ve had in months, maybe years. I don’t usually talk to her about things because she doesn’t usually answer.
The smallest things can give difficulty anymore. Taking her 4 pills in the morning used to be no big deal. She takes a multi-vitamin, a blood pressure pill, Plavix (blood thinner) and an incontinence pill. As I put the pills into her hand, I tell her to “swallow them, don’t hold them in your mouth” and give her a half glass of apple juice. She swallows all but the multi-vitamin which she rolls around in her mouth and chews (with no teeth). No matter how much cajoling or persuasion, she won’t swallow the pill! The first time she did this, I didn’t notice until she was eating her cereal and she still had it in there. Miraculously, she still had it left in her mouth after eating an entire bowl of cereal. That takes talent or determination but I was too flabbergasted to figure out which. This doesn’t happen every day, mind you, but it’s happened a handful of times. Now I just make her spit it out. I’m afraid to stop giving it to her since then she might pick a different pill to not swallow. She still does that with food she eats that she saves one last mouthful that she won’t swallow and will chew it all day (we’re talking HOURS) unless I make her spit it out.
I love the smell of urine in the morning. That’s a joke I make to get me through the unpleasantness that is waking up. 2 years ago my life got considerably better by finding out about absorbent bed pads. I spread 2 across Mom’s bed and it catches the majority of what the diaper doesn’t hold. Believe me, that’s a lot! As things have gotten worse, I’ve had to strip the bed almost daily to dry the rest of the sheets that have gotten wet. I don’t wash them every day or I’d get nothing done! Besides, she lays on a dry pad so it doesn’t matter. In the beginning, I tried to be frugal and if the bed pad was not that wet, I would hang it to dry and it could be used again. Now it’s so wet that I just fold it up and throw it out. It’s crazy how much I dread getting up anymore. I can’t stay in bed even on vacation because I don’t want Mom in bed more than 9 hours at the most (usually 8) since the longer she’s in bed, the wetter it’ll be. I need to get her walked from the bed to the bathroom which feels like I’m pulling a mule sometimes. She’s gotten a lot slower to move and wants to grab on to things as she goes by for support. I get her into the bathroom and positioning her in front of the toilet sounds like it would be simple. She’s stubborn and won’t turn and doesn’t seem to know why we came in there. I peel off her reeking nightgown and get her to sit on the toilet. She won’t always go pee though. Sometimes it’s because she went in bed. Other times she is too agitated to relax enough to go. I’ve tried to do a Pavlov’s dog thing where I tell her to “put your hands together, close your eyes, take some deep breaths, relax and go pee”. That worked for awhile but lately she’s been contrary and keeps wanting to get up. I have to listen to hear if she pees. If there’s other noise going on, I have to lean her over and look to see if she’s gone yet. I also check to see if she’s started taking a bowel movement. The fun never ends.
Have I told you that I dread going to bed at night? Yeah, that too. I’m not afraid of hard work and don’t mind helping her or people in general. I am more than willing to do for someone else but it all feels so futile. If our repertoire involved a different level of interaction, my life would be so different. If she crapped on the floor and was like, “I’m sorry, honey, that I had an accident and left a mess for you to clean up.” I’d be like, “That’s ok, Mom. I’ll take care of it. Don’t worry about it.” That is not my reality. I shouldn’t expect gratitude or even credit for caregiving. I can’t expect a smile or hug or even a kind word. I’m unrealistic to expect an answer to anything I ask her. The saddest thing is things aren’t going to get better. They are only going to get worse. How does a person “keep on keeping on” when their day is just one depressing thing after another? I don’t know but I’ve been managing to do it. I wish I could say I never lose my temper or never get frustrated but I do. I guess that makes me human.
My hubby tells me at least once a day, “You’re such a good person.” He never gives me any other compliments. I don’t feel like a good person. I feel like someone who has no choice and is doing the best they can. One day I told him, ‘I hate it when you tell me I’m a good person”. So then he replies, “That’s why I do it!” Argh.
So we were watching “Bounce” a movie from 2000 on Netflix with Ben Affleck and Gyneth Paltrow. In one scene, the female character gets up from a booth in a diner where they are sitting and talking to someone else to run after a woman who came out of the restroom and unknowingly had toilet paper stuck to the bottom of her shoe. Instead of making an issue about it, she just went up behind the woman and stood on the paper and let her “walk it off”. The woman who had the toilet paper on her shoe never knew that the female character had done this for her. She came back to the booth and said nothing about it to anyone. It was just the right thing to do and she did it. That’s a good person. When I saw that, I got tears in my eyes, I thought how I wouldn’t mind being that type of good person….