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Posts Tagged ‘#dementia’

I’m not having any trouble passing the time while hubby is gone. I never run out of things to do. I always have big plans but when it comes down to it, just surviving keeps me busy. I mean maintaining. I’ve noticed I have a way of being melodramatic when I write. Not to be outdone by my in person melodrama. ūüėÄ

 I pretty much run a 1 person nursing home in our house. Hopefully, with more care and dignity than a real nursing home at a fraction of the price. In addition to the usual care, I’ve been doing my fair share of “doctoring” or “nursing” the past few weeks. We got home from our last vacation Friday June 24th. 2 days later, Mom got her first bedsore. Keep in mind she’s not bedridden. She doesn’t lay in bed and she can walk (slowly) but sits a lot. I get her up to go to the bathroom at intervals but she doesn’t move enough to get good circulation on her hind quarters. These are often called pressure sores from having pressure against the skin and it weakens over time. Well, hers was precipated by a bout of diarrhea where I may have cleaned her too vigorously. The skin of our butt cheeks is probably thinner than the cheeks on our faces. So it started out about the size of a thumbnail. I knew I had to nip it in the bud right away before it got worse or she got more of them. So I googled bedsores and was scared half to death. This happens to me every time I look something up on the Internet. There is so much bad information out there and worse case scenarios. Yet, I never learn to not look. Maybe it’s because I feel I have no one else to ask. 


Things that have changed since I last wrote about Mom’s Alzheimers:

 Since our last vacation, I no longer make her coffee. This is a woman who loved her coffee more than the average person. She had to have a cup every morning no matter what. She used to have some throughout the day and then dwindled it down to a just an additional half cup in the afternoon. Recently, she’d been drinking less and less of what I gave her. Then she started not drinking it at all. It would sit there with only one sip out of it. No matter how much I reminded her to drink or yelled at her to drink it, she wouldn’t. I would end up throwing it away every day. I would ask her why she didn’t like it anymore. She wouldn’t answer. It’s left up to my imagination why she won’t drink it. All I know is it’s not even an option for her anymore. She doesn’t ask for it, I don’t provide it. Wondering how I’ll use up the half full can of Maxwell House since neither hubby or I drink coffee….

 
I quit giving Mom a multi-vitamin every day. She wouldn’t swallow it and I’d have to yell at her to swallow the pill and she still wouldn’t. She’d just roll it around in her mouth and I’d have to have her spit it out and I’d throw it away. I took the last few that were left in the bottle and now I’m not taking a multi-vitamin either. I’m trying to tell if I feel any worse for not taking it. It’s really hard to tell.

 
I am doing more for her every day. Since I’ve never had kids, I picture what it’s like to have a toddler who can’t do things for themselves and you take over without thinking. Then each day, the toddler learns more and is able to do something today that they couldn’t do yesterday. They are feeling a bit more independence and the parent is feeling pride at the child’s achievement. In our case, I know each day Mom can do a little bit less.

 
Mom can no longer dry her hands. Or should I say, she does such a poor job, I end up having to dry them after she does it. So it’s easier for me to just dry them. Especially since she can’t turn towards the towel rack from the sink. I have to grab the towel off there and take each hand in the towel and dry it. It’s not the worst thing to have to do but it shows how she can do less every day.

 
I now pull her pants up and down as needed. When she tries to pull them up herself, they only go halfway and she’d just leave them that way. Same with taking them down. I’m still putting her in underpants with a pad, followed by a diaper (or adult underwear) and then her regular pair of pants.

 
There was lots of scare information about bed sores left untreated and turning into life threatening infections. There was talk of moving the person so they don’t sit in the same position all the time. I can see how that’s necessary (and easier) when they’re only laying in bed. But to sit, there’s really no other option but to sit on your butt. I made a point to put her up on pillows where she wasn’t sore. Luckily, she sleeps on her side (not the side that had the sore) so that gave it some rest. Right off the bat, I had started using Neosporin and a large bandaid. That didn’t do anything, in fact it was getting worse. From the size of one thumbnail, it had become 3 thumbnails in size. In such a short amount of time, it was panicing me. Reading some of the remedies online, one said to put honey on it. That it did wonders. All I could think of was the ants that would gravitate to it. Another internet source said to sprinkle Tumeric on it. I didn’t want to do any of these hair brained schemes until I’d talked to someone.

 On Friday July 1st (the Friday of the long holiday weekend), I called our family doctor. Wouldn’t you know, he was out on medical leave indefinitely?! He’d been out for “some time” already and they had no idea when he’d be back. Knowing our doctor as I do, I had a sneaking suspicion that he wanted the summer off. I don’t fault him for it. Unfortunately, he had no one filling in for him. He now works in an urgent care type place associated with a hospital and people were filling in for him only as needed. They told me to leave a message and they would send it to him and call me back. I didn’t hear back so called about 4:15 pm and was told that he hadn’t even opened his messages. I ended up talking to a nurse. Can I say, I HATE NURSES. She asked a bunch of questions, I was basically asking if I should continue doing what I’d been doing for the bed sore or if there was some prescription medicine that would make it heal quicker. She said that my mom needed to be seen!! I needed to take her to the emergency room in the next day or two. That a bed sore can get serious very quickly. If you’ve ever been to the Emergency room of a hospital, it is MANY hours of waiting, no matter how much pain you’re in. It’s very frustrating. Knowing that Greg would be leaving in a little over a week just fueled my stress. If I had to take her in somewhere, it would be much easier to do it with his help. But taking her somewhere like that unnecessarily could be the worst thing. I was upset most of the holiday weekend.

 
I went back to the Internet and saw reviews for this cream called Emuaid. I’d never heard of it before but it cures all kinds of hard to heal wounds. It’s super expensive like $48 for 2 oz. But the jar will probably last a few (or several) years. Plus you can’t put a price on being healthy and peace of mind. When this first turned up, I had gone to Jewel Osco (our local grocery/pharmacy) and asked them what they recommend. They had NO CLUE. They couldn’t even steer me to the correct bandage. When I saw this Emuaid, it said that they now carried it at CVS pharmacy. Sat. July 2nd, Greg & I went over there and I asked the pharmacist. They don’t carry it, nor had they heard of it. They also were no help. Luckily. I have a big mouth. I will ask ANYONE and EVERYONE literally ANYTHING. I had seen online that another place nearby supposedly carried it. So while in the CVS parking lot, I called “The Way of Life Health Food Store” in Niles, IL. I asked if they carried that cream and they said yes and then I asked for directions.

 Apparently, this place has been around for decades and I used to shop at JoAnn Fabrics (which is now out of business) right next door and didn’t notice the place. This time when we pulled up, there was a guy on his knees on the sidewalk, scraping gum off. That impressed me from the get-go. I told him he must be a new owner because he still cared. Turns out he’s not the owner at all but he’s pretty knowledgeable. 


We left the store awhile later and $117 poorer. We got the Emuaid, as well as some mult-vitamins in LIQUID form. I never knew they came that way. So I’ve been mixing in a shot glass worth in Mom’s apple juice every morning. It smells bad the way vitamins do so I know I’d gag if I tried to drink it. Mom takes it and drinks it right down. I got some Himalayan Pink sea salt and some natural fiber comparable to Benefiber which I take twice daily. To a make a long story short (that ain’t ever going to happen!), the Emuaid did the trick! I started it Sunday morning July 3rd and put it on once a day. Sometimes more if the bandage came off and I had to replace it.

 Then on Tues. July 5th, I got a phone call back from that nurse. She said she heard back from Dr. James and he wanted her to be taken in to either an emergency room or an urgent care place right away. She needed to have it scraped and a culture done and check for MRSA. In case you don’t know, that’s some hard to treat (sometimes fatal) bacterial staph infection. I can’t even tell you how this shook me up. I felt like we were on the road to recovery but didn’t want to take chances with her health. The nurse has no idea HOW HARD it would be to maneuver Mom over there and then get her up on a table and put her through all that. I texted Greg at work and he called me and we talked about it. All I know is that you can catch a ton of things FROM a hospital setting. Things you didn’t go in with. I would never forgive myself if I took her somewhere and she picked up something like MRSA and died from it!!!

 So I used my own judgement and monitored it constantly. I made sure I kept it clean and dry which is nearly impossible with her incontinence. I noticed it getting better very slowly and as of a few days ago, it was COMPLETELY healed. Amen and Hallelujah! It just goes to show that listening to a doctor or nurse like it’s the gospel isn’t always right. They are covering their ass, trying to make sure they don’t get sued. I’m afraid there are a ton ofelderly or bedridden people out there dealing with this and getting back advice. 
Mom doesn’t like to hold up a glass to drink. She wants me to do it. Today she fell asleep with a glass in her hand and dropped it and it broke on the carpet. I guess it’s my fault for not taking it away from her promptly. 
I’m getting sick of writing about Alzheimers. I have to live it, I don’t want to think about it in my diown time. I have other things I want to write about in the coming week. We’ll see if I can manage it.

 
My dad’s Aunt Emma (he only had one aunt and she was ancient when I was born) used to always use the saying, “This Too Shall Pass”. No matter what happened. It takes many years of living to appreciate those old sayings. It never meant much to me until now. My interpretation of it is that no matter whether something is good or bad (but usually referring to bad), it will eventually come to an end. You can be content in knowing that pain and suffering will pass, loneliness and despair, grief and sorrow. They are not everlasting. Although even disappointment can feel deep and overwhelming at times. We tend to often forget that emotions are temporary and if we can remember that it will pass, it will see us through the hard times and keep hope running through our veins.

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I find myself in the same place every time I write a blog post. With too much time elapsed and too much to say. So much has happened and there’s too many words to squeeze into one blog post. There’s also no time to do multiple posts. So what do I do? Just dive right in without a care for length or coherence. Grab a life preserver so you don’t drowned.

Since I last wrote, my 10 year old Toshiba laptop finally died. It was about a month ago and it wasn’t even that upsetting. I never back anything up. Crazy, right?! A lot of stuff on our phones goes automatically to The Cloud for preservation. My laptop would have to manually be backed up and I’ve never¬†gotten into the habit of¬†it. I’m sure I’ve lost a lot of things that I probably don’t know I had or didn’t know I would ever need. The first few times I lost everything on a computer, I was devastated. I thought my life would never be the same. I was turned off computers to the extreme and didn’t feel they could be trusted. Now it’s happened so many times, it’s like the basement flooding. It sucks but you just deal with it and half expect it to happen.

Today is the first day I’m using an HP laptop that my husband got over 2 years ago. It had the Windows on it that everyone hates. My husband was trying to lure me away from my old laptop before it went. As anyone who knows me knows, I love what I have and hate change. So I wouldn’t even think of using this one until I had no other to use. It takes me forever to get used to new things and I’ve been dreading actually pulling this out to use. Hate is a strong word but I kind of hate it. The keyboard placement is all wrong so my hands don’t sit right when I type. I’m used to typing very fast and not looking to see where my¬† hands are. Now I’m making so many mistakes and concentrating on typing instead of what I want to say. But instead of complaining,I’m going to be thankful for having a computer to write a blog post on. I’ve been missing my blog so much. Just bear with me if the font is huge or the paragraphs are off. This is going to be a necessity to learn since I have to figure out how to do Etsy on it, too.

The end of April we took Mom to the audiologist for her new ear mold which didn’t help a bit. It fits better but she doesn’t seem to hear any better or comprehend what is said. I’m sure that’s more from the Alzheimers than anything else but I had to try. Same with taking her to our regular doctor on April 28th. He said she looked good and I was doing everything right and just keep doing what I’m doing. He listened to her heart and lungs and looked at her ankles to see if she was retaining fluid (she wasn’t). He said the organs begin to slow down with Alzheimers and they begin to fail 7-9 years after initial diagnosis. Mom was diagnosed not quite 4 years ago so the thought that this could go on another 3-5 years gave me a wake up call. After her doctor’s appt. we went out to eat for the first (and only) time this year. We went to Sweet Baby Ray’s for barbeque and she ate her whole meal and loved it. This is never a problem since she’s always had a hearty appetite. She made such a mess of her hands and face which is typical of her eating anything now.

We went on vacation to Green Bay, WI from May 12-21. Hubby wanted to go early and miss the crowds that go out for the Memorial Day holiday. We had about 4-5 days of unusually cold weather and then the rest was beautiful. Due to having the wheelchair for Mom, we took her with us all 4 times we went gambling that week. We actually had more fun doing it than we have in awhile. A lot of the time we all played one machine together. Mom tends to hit the MAX BET button by accident so we have to watch her like a hawk. The last night we were there, she fell asleep while we were gambling. She talks less all the time and when she does speak, it’s gibberish, not in full sentences. It was much easier to push the wheelchair in the casino so now I’ve figured out it’s the sidewalk and street that make it hard to push, not that I’m weaker than I thought.

Mom has gone down hill just in the 11 days since we got home. She’s pulled down the towel rack in the upstairs bathroom and hubby glued it back on. We had to take the one in the downstairs bathroom down all together since she kept knocking it down. Mom fights me everytime on the toilet. She no longer knows what the bathroom is for! I told that to Greg and he said, “She thinks it’s the room you go in to yell at her.” That is so true. I don’t like to yell but between the hearing loss, the Alzheimers and how easily she’s distracted, there’s no choice. She can fiddle with the drawstring on her pants forever or fold and refold the toilet paper until my patience runs out. When I take Mom to the toilet, she doesn’t pee on it at all anymore. No matter how much I yell, plead or beg, she won’t pee. I even run water but nothing helps. She’ll go on the couch or in bed or in her chair or as she’s walking. It doesn’t matter if I take her earlier or later, it’s the same. So far, she has bowel movements mostly in the toilet. I have to bend her over on the toilet to have her stomach push out whatever’s ready since she won’t. The doctor tried to explain to me how her mind no longer reads her body’s signals and her body may not be sending signals anymore. Anyway, she fights me as I try to bend her over and she pushes on the wall in front of her and I am leaning on her with my hands on the wall behind her pushing with all my might. This stubborn old woman is stronger than me! I’ve tried explaining sweetly why she has to bend over but it does no good. I still need her to bend over so I can wipe her butt, too. This ensues another fight. Lately, I feel like I’ve gone 10 rounds with Floyd Mayweather (famous boxer). I am battle worn and don’t see a way out. I don’t think they’d be able to care for her better in a nursing home but I find myself getting so upset I’m afraid I’ll stroke out.

Yesterday I came downstairs from taking a bath to find a big turd on the kitchen rug. At first, I couldn’t tell if it was from a dog or a human??? If that sounds familiar, it’s because in the past it happened in almost the same place and was human. This time ¬†it was from Ivy, our basenji dog. Mom rarely gets up unaided so she will be wherever I leave her until I come to move her. In any case, I took a pic of it to message to Greg but ended up posting it to Instagram instead where it got very few likes. I was surprised to see there’s a hashtag #mylifeisshit. That’s what my life has been reduced to but I guess people don’t have to like it… ūüôā

We had a pretty good vacation since our expectations were low. I had done a lot of cooking before we left and so we ate leftovers in the RV all but one night. We got beef lo mein from Noodles in the casino and brought it back to eat. We read some in the RV and I finally finished The Mutiny On The Bounty trilogy from 1932. It was scrumptious! We haven’t gone to any estate sales in our area for over a month. We did hit one while on vacation and also went to our usual treasure hunting haunts in the north woods.

We’ve had so much to do since we got home. Between laundry, grocery shopping, bill paying, cooking and yard work, there’s not been a spare moment. On Thurs. May 26th, we went to Sears in search of an 11.5 ft. offset umbrella for the deck. We’d seen it online but wanted to see it in person before purchasing. We had bought one about 10 years ago from Sam’s Club and it was glorious! Made of heavy wood with a stunning green canvas, it lasted intil last year. It’s much too hot to enjoy being outside without the shade it gives. A decade ago we paid $300 and it was worth every penny. The umbrella we ended up getting was $300 also but is just “ok”. It was on sale down from $500 but it seems inferior. It is made of metal and plastic with an almost opaque fabric in a blah tan color. That’s the only color it came in. Since it was the start of the holiday weekend, we knew we had to get it Thurs. or they’d be gone. They showed 2 in stock but had sold one that morning so all they had was the display and they weren’t selling. So we had to buy it and drive to another store to pick it up. They no longer will send it to the store of your choice for pickup. So we went and got that and Greg was able to get it assembled before nightfall. I also got a pair of slippers and Greg got a pair of much needed sandals. I got to thinking how everything we’ve ever boughten at Sears is just ok. Never anything we’re in love with. Just something to get us by until we can find what we really want. That’s pretty sad. Somebody needs to put a fork in¬† Sears because they’re so done…

Thurs. we also went to Pesche’s to get our plants. We bought 2 cucumbers (different types), 13 tomatoes (4 types), 30 peppers (5 types), zucchini, yellow squash¬†and 4 herbs. Then we had to come home and weed the garden and then get the rototiller out. Meanwhile it was raining off and on all weekend. Not much or long but enough to keep us from spending much time outside. Friday we started the actual planting and finished up on Saturday. This is the latest we’ve ever put in the garden! Everything looks great and has already grown quite a bit. To me, that’s half the fun–seeing the plants soar to the heavens and produce such lovely goodness. The other half is eating them. I also picked my rhubarb and have to do something with that shortly.

What else has gone on lately? Sat. May 7th I dropped my iPhone in the toilet! I wasn’t even using it, just had it in the too short pocket of my shorts. I was pulling my pants up and it fell out and splash. I reacted quickly and grabbed it. It was barely wet and I put it in rice immediately. I left it overnight and then took the case off and cleaned it thoroughly. It’s worked fine ever since. It just goes to show no matter how careful you are, things like that happen to the best of us. And the worst of us! ūüėČ

May 7th we also went to the library book sale in our hometown of Park Ridge, IL. They only have it twice a year and it’s always worth going to. I think about it for weeks ahead of time and look forward to it. It’s funny how that day I forgot all about it until noon! I was at home and I saw a pic of some book on Instagram and the person said they got them at the library book sale and I was like, “Was that today?! Holy smokes!” So we ended up getting a few things even though we have too many books already. Part of my joy lately is that I’ve gotten Greg back into reading. He is enjoying it like he hasn’t since hew as a teen! It’s so relaxing and turns out to be a good stress reliever and way to unwind for both of us.

I’ve rambled long enough to scare everyone away all over the Internet and within a hundred mile radius.

 

 

 

 

 

 

 

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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….

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Happy New Year to all my readers and friends who are checking in to see what I’ve been up to. ūüôā We did decide to forgo putting up a Christmas tree at home for spending the holiday in Tunica, MS again. We got back the evening of New Year’s Day and I’m still playing catch up with everything at home. I’ve got laundry going as I sit down to write this and will be making Cottage Cheese Chicken Enchiladas later. Today is the Packers playoff football game but since hubby is working, we’ll watch it tonight after he gets home.
Hubby grows a beard every winter!

Hubby grows a beard every winter!

Hubby had his work Christmas party on Wed. December 17th. It was also a going away party for one of the lawyers in his office who was taking a job in Hawaii. Hubby volunteered to decorate the tables and rooms for the party so I helped him pick out items for the display. We both like doing that and we used a combination of Christmas and Hawaiian items. I baked 4 dozen peanut butter cookes and 2 1/2 dozen Russian Tea Cakes. I made both from my mom’s 1950 Betty Crocker Cookbook. Everything in there is really the best. There were only a few cookies left and we ended up bringing them along on our trip.
The Babes--pay no attention to my double chin.

The Babes–pay no attention to my double chin.

We left Thurs. December 18th and spent the first night behind the Resorts Casino in the parking lot. Then checked in at Hollywood Casino RV Park for 13 nights. So we were there a total of 2 weeks and it was quite enough! We had planned to come home on Friday Jan. 2nd but the weather was turning bad with snow expected. We decided to get out a day early and beat the elements. That meant staying up until 1 am and then getting up at 7 am to get ready to leave. There is no way I’ll ever agree to spend New Year’s Eve in bed sleeping. Last year we’d been over at the casino at midnight, gambling and in jolly good spirits. This year, Mom had no desire to be in the casino and I wasn’t about to leave her alone then. So Greg & I spent New Year’s Eve watching music videos on YouTube! It was actually a lot of fun! My very favorites are Psy’s “Gangnam Style” & “Gentleman”, Pitbull’s “Timber”, Jessie J.’s “Bang Bang” and ALL of the videos by Ylvis (2 Norwegian brothers) most famous for “What Does The Fox Say.” Mom had fallen asleep on the couch across from us and we woke her to wish her Happy New Year and then I put her to bed.
Me & the dogs. Never far apart.

Me & the dogs. Never far apart.

Aside from one event a day and a half before we left (which I’ll be writing a separate blog post about), this vacation was rather boring. Greg calls it peaceful. It was a lot colder than Thanksgiving so I didn’t get outside as much. Greg still managed to get the dogs out for long walks and I went a few times. There was like 3 days straight of rain in the middle of the 2 weeks. We did hardly any gambling. We went several days without playing any slot machines at all. We watched a lot of movies on Netflix which was fun. We don’t manage to do that at home¬†like you’d think we would. We also did some reading. I finished D.H. Lawrence’s “Sons & Lovers” which I thought was really good. Then I started “Women In Love” and am halfway through and find it dull. I’m going to finish it because I expect it to get better at some point!
Here's your Christmas Card!

Here’s your Christmas Card!

Over Thanksgiving, we got our entire stay comped in the RV park which was nice. Plus our meals free. This trip we had to pay for 9 out of 13 nights but it was cheaper to do that than gamble a lot. We also had to buy about¬†5 meals that were $5-7 each which isn’t bad at all. We had brought an extra gallon of milk along so didn’t need to go shopping once while there! Sadly, we now feel like we’ve worn it out there. Maybe we’ll feel differently after a few months pass. Things have changed so much since we first started going to Tunica. They used to decorate so opulently in the casinos that it would almost take your breath away to behold. Now you wouldn’t even know it’s Christmastime! They no longer play Christmas music, they don’t put up a Christmas tree anywhere or decorate at all that we could tell. They put up a huge toy train at 2 places but it could have been for any time of year. People used to dress up (at least a bit) for the holidays and wear fancy sweaters or dress shoes, etc. Now people are going around in pajama pants and hoodies. In public. To eat Christmas dinner. I had brought along some dressy clothes to wear but when I saw that, I didn’t even bother putting them on. The casinos in Tunica used to give away gifts like it was going out of style. We’d get blankets, a coat, hat, a watch, champagne glasses, you name it. Now they don’t give away anything! They do have drawings and things for winners but not to people just for showing up. It’s not like we need anything but it makes it fun. One of the biggest casinos went out of business last June. Greg thinks the rest are headed that way. It’s sad to see change when it’s not for the better.
Popsicle Art. Found in a Mississippi parking lot.

Popsicle Art. Found in a Mississippi parking lot.

We ate a lot of good southern food on the trip. Then since I’ve come home, I’ve been making a ton of cold weather meals to keep us going. As soon as we got home, the temperatures sunk down to zero with windchills 25-30 degrees below zero. They cancelled schools in Chicago for 2 days this week. It’s been too cold to walk the dogs so I’ve been home bound. I’ve made chili twice, banana bread and chicken noodle soup.
Mississippi Sunset.

Mississippi Sunset.

Wed. Jan. 7th, Mom had a bout of diarrhea. It was only a 1 day bug type thing. It doesn’t help that she can’t tell me when she feels it coming on. I have to read her body language and keep asking her if her stomach is bothering her. She doesn’t move too fast so even if I help her to the bathroom (which I do every time she goes now), she’s likely not to make it in time. She also doesn’t seem to comprehend what it is because she puts her hands right in it like it was something to play with. Gah! She went through 3 pairs of under and outer pants before I wised up and put her in diapers for the day. By then it was better and by the next day, gone completely. When I put her in diapers, I kept wondering if that’s how the elderly end up in diapers 24/7. One good (?)¬†thing from the trip is that I was with her day and night so FINALLY her leg healed! The one she had skin ulcers on and would pick until it bled. I kept it wrapped even though it was healed. Then after we came home, a few days later, I was in the kitchen cutting vegetables and came to check on her. She was picking her leg and had got it bleeding again. ūüė¶ It was so disheartening to me. She doesn’t care one way or the other but I felt like all my hard work was in vain. It is almost healed up again but I can’t be with her (hovering over her) every second! I have to be able to leave the room to use the bathroom myself, fix meals, do laundry, let the dogs outside, etc. If I had it to do over, I’d get a baby monitor so I could hear what’s she up to. As soon as I heard movement or rustling, I would hustle in there and catch her before she could do any damage. It doesn’t do any good to tell her to leave it alone or even explain at length WHY she needs to not touch it.

Now comes the hard part of the year. The next 3 months of the year are filled with isolation. More than the rest. Looking out at the snow on the ground, it’s so pretty but also has a bleak quality that leads one to a feeling of emptyness. I don’t know how much treasure hunting hubby and I will do. There were some this past weekend but we felt it was too cold to bother with. I guess we’re not hardcore enough. I’m sure the estate sales still had people going no matter the weather. In the meantime, I’m going to get more items listed for sale on Etsy and surround myself with things I love to get me through winter.

I have no New Year’s Resolutions. Just to get through one day at a time with my sanity intact. This was the first Christmas since I started sending Christmas cards (at about age 12) that I didn’t send any! It was one tradition I wanted to keep up. I thought it would be the be-all and end-all if I didn’t do it. Between running the home business, taking care of Mom, packing for the trip and baking for the Greg’s Christmas party, I just didn’t have time to make them, let alone address them. I’ve got to say, it didn’t bother me as much as I expected it too. I actually felt ok that I didn’t force myself to add that as another burden. In recent years I’d send out 35 and get maybe 15 if I was lucky. It seemed like so few. Now I didn’t send any and got around 15. It seemed like so many! Ha ha. I’m not saying I won’t send them next year. I might! At this old age, I’m learning things don’t have to be set in stone. I’d like to say I’m going to learn to sew and knit this year but don’t want to add any more pressure to myself. My motivation is at an all time low. What do you do for inspiration?

 

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Alzheimer’s disease is a lot of things. But mostly it is sad and awful. Sometimes it feels like my soul is being sucked out of me just being around it. The burden of caring for someone with it is one thing. The loss of that entire person’s being is another. Not only am I no longer her daughter, she is no longer my mother. Physically and legally, yes she is. But emotionally and mentally, she is a stranger. Today I asked her again, “Who am I?” She said with utter confidence, “My sister!” I left it like that. I don’t bother correcting her when she thinks that. It wouldn’t do any good. I just accept it and it doesn’t even cause me that much anguish anymore.

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.

 

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At some point, without realizing it, I have quit living. Don’t get me wrong. I am still among the breathing souls on earth. My life has become one big circling of the drain. Not going down due to the drain being clogged and never making any progress. Just existing with massive amounts of frustration thrown in for good measure.

I pretty much self-reflect year round but it tends to happen more around my birthday. My birthday has come around again but instead of my usual pity party, I’ve become almost apathetic. That’s so not me. I am always filled with vast quantities of enthusiasm and hope. Almost naively so. It’s not even the repetition and routine of my daily life that has me feeling pointless.

No doubt caring for my 93 year old mother with Alzheimer’s has worn me down to a nub. I can go and go until suddenly I can’t anymore. It has all caught up with me. Tuesday is bath day for Mom¬†and I usually pretty much leave that to be the priority¬†for that¬†day. I don’t try to do much more because it’s so exhausting for me. Yesterday was Tuesday Aug. 5th and I pushed myself too hard. I knew it while I was doing it but still did it anyway.

I got Mom up and fed and got her on the computer to play games while I paid some bills online.¬†I get everything ready ahead of time. I bring downstairs: her comb, my razor, a scissors, a towel, her earplugs, etc. I lay out the clean clothes she’ll wear after the bath.¬†I get out her towel, washcloth and bathbrush. I put the 2 plastic gripper bars on the tile above¬†2 sides of the¬†bathtub.¬†I get out the No More Tears shampoo and clear away around the kitchen sink. I pick up the area rugs on the kitchen floor.

I cut my fingernails and toenails and then¬†I cut her fingernails. She protests and pulls away to look at each one after I do it. It takes a lot longer than it should. Then I have her go into the kitchen and sit in the chair. I comb her hair and then start cutting it. I cut it about once a month. I’ve gotten better at it over time. Mostly because I care less how it turns out. I was always afraid of cutting too much and making her look funny. Now I just cut away with abandon¬†and it turns out fantastic. I guess that’s what real hairdressers do! Afterwards, I throw out the hair I’ve put in the kleenex on the counter and wash the comb. I use the razor on her chin hair and mustache. I trim her eyebrows. I get the water to just the right temperature. I tell her what I’m going to do before I do it. I tell her I’m going to take her hearing aids out and put in the ear plugs. They are attached to a string that hangs down. I tell her NOT to try tucking it into her pajama because it just pulls them out. Then I show her how to lean over the sink so she’s far enough over that the whole kitchen doesn’t get wet. I take her glasses off and put the earplugs in. She leans over and starts tucking the string in her pajama. My words and speech are repeatedly in vain all day long, every single day. What I say has no consequence and doesn’t matter. I guess I know there’s more at play like her inability to hear, comprehend or verbalize a reply. Most of the time, I can shrug off the feeling but sometimes I can’t help but take it personally. Rationally, I know it’s ridiculous but after yelling and getting myself worked up, I’m completely irrational. I get her hair wet and before I can reach for the shampoo bottle, she is yelling, “Ya done?” Not quite. So I lather up her hair, massaging her scalp. I rinse it really well and wring it out. Then place a towel over her head and guide her back to the seat a yard away.

I dry her hair with the towel and comb her hair. I put her hearing aids back in and her glasses back on. Then I tell¬† her to come upstairs and sit on her bed. I carry everything else back upstairs. She sits on the bed while I draw the bath. I have to keep checking on her so she doesn’t start putting the clean clothes on that are on the bed. I explain to her that she’ll have to use the toilet before getting into the tub or she’ll crap in the tub. She always says “but I don’t have to go”. I’ve learned to not listen to this EVER. I make her get on the toilet. I explain to her how to get in the bathtub. There’s only one way she can do it. She faces the wall with the window on it, holds the window ledge, lifts one leg in and then the other. She uses the grip bars and 1 side of the tub to lower herself onto her knees. Then she rolls onto her side and then onto her back. To get out she has to do the reverse. It should be simple but often she’ll forget how to get out or won’t listen to me and try to get out another way or just say “I can’t!” I put the lid down on the toilet and sit there and guide her through the bath. I have to tell her what body part to “wet” with the washcloth, then I squeeze liquid soap out of the bottle onto the washcloth for her and she washes said body part. Then I tell her to rinse it off with water. I have her start with her face, then do her neck and chest and stomach. Then if I’m not on the ball, she’ll start doing her face again. So I catch her and tell her to do her arms. Then it’s her hips, legs and feet. After that I wash her back for her with the washcloth and then the bathbrush. Then I wash under both her arms since she seems to neglect that area. Then I tell her to wash her crotch and then her bum. She seems to do a crummier job each time. I know eventually I’ll be washing more parts of her body as time passes. In the meantime, I want her to do as much for herself as she can.

After the histrionics of getting out of the bathtub, I wrap her in a towel and dry her off. She doesn’t even bother if I don’t do it. I have her sit on a towel on the toilet lid while I go get a pair of underpants and a pad. I put on her glasses and hearing aids. Then I get her to come into her bedroom to dress. I have to get out the paper towel, postal tape, Neosporin to wrap her leg. She’s still scratching it much to my chagrin. She also tears the bandage off within hours of me putting it on. She dresses herself with a little help from me. Meanwhile, I drain the tub and rinse it, hang the towels to dry, take down the plastic grippers and put them away. I come back in the bedroom and recomb her hair since she pulled her shirt over and mussed it all up.

I tell her to go downstairs and know she’ll be lost without a game up on the computer so even though I have things to do upstairs yet, I go down ahead of her and put a game up and get her a cup of coffee. Which she says she wants but then will forget to drink. She plays while I go back upstairs. I strip her bed and see that the sheets are torn and go to the linen closet and put a nice¬†fresh set of sheets on. I take the others¬†down to the basement¬†to wash. I come up and get the broom and dustpan out to sweep the hair up off the floor and replace the area rugs. I put away the shampoo.

I then make our lunch and realize that I need to make a sandwich for my husband’s lunch the next day. By this time, I have to get her to the bathroom again, all the while reminding her not to pick her leg. We eat lunch and I go put the sheets in the dryer. Then I go upstairs and strip our bed and put our sheets in the basket to take down to wash. I then have to go back up another 2 flights of stairs¬†to the spare bedroom to get the vacuum out. I take it down to the first floor where Mom is napping and vacuum the whole house. She doesn’t wake up¬†until I’m vacuuming underneath her.¬†Normally, I would do it Wed. so it is clean for the weekend but this morning I had an early vet appt. and I wanted to get some other things done. So I did what I’d do over 2-3 days in a single day. Not a good idea. The house looked better but I was ready to drop. I was hurrying since I wanted to have everything done before hubby got home from work at 7 pm. I went down and put the sheets in the dryer and then went back to the 2nd floor to take a bath.

So I get in the tub and I’m thinking about past birthdays and my next blog post. I stand up to wash my hair. I use the hand held showerhead to wet my hair. Then I put the shampoo on it and was lathering it. I’m completely bent over at the waist. I’ve done this thousands of times. Then all of a sudden I feel this weird sensation behind my left ear and SUDDENLY I’m so dizzy I can’t stand up. I started listing badly to the left. All I could think of was how I didn’t want to fall and hit my head. So I kneeled down. I thought it would pass. Instead it got worse. I had to work to keep my head from diving into the tub. Meanwhile, I have shampoo in my hair and it’s getting in my eyes. I NEVER go without putting conditioner on my hair. Due to its natural curl, it looks like I stuck my finger in a light socket when I don’t use conditioner. But I was physically unable to proceed so I pulled my legs out from under me and just sat in the tub. Face plant successfully avoided. I took the handheld showerhead and rinsed most of the shampoo out of my hair. I had to crawl out of the tub using the towel rack under the window. I thought it was going to snap from my weight. I sat on the toilet seat and was sweating profusely. I didn’t want to make any sudden movements for fear of passing out. I just sat there and made a plan to try to make it to the bed. First I had to use the toilet in a hurry and then I suddenly felt so nauseated. I stood up to wash my hands at the sink. Then I started vomiting clear saliva. It would be dry heaves except for saliva. I’d never done that before. I had¬†3 bouts of that.¬†Once as I’ve mentioned, another¬†after I was sitting on the bed and one after Greg came home.

After a few minutes, I attempted to get to the bed. I made it and laid out a towel to sit on. All I could think of was lying down. But there were no sheets on the bed, only the mattress pad and I was still soaking wet. I made another calculated move and went back in the hall and just reached in blindly for another bath towel. I put one on the pillow and laid the other one where my body would lay. I didn’t make it that far. Greg came home and I called to him to come upstairs. He helped me lay down and I had him lay next to me. He checked me to make sure I didn’t have a stroke. I didn’t have any body numbness and could raise both arms plus I had no slurring of my speech. I had my own clean clothes laid out on the bed so I¬† had him help me get my underpants on. I just felt so weak and sick.

I made it downstairs to the couch and just laid with an icebag. A little later my face got red and very hot. Feverish. I¬†had Greg take care of getting Mom to the bathroom and dishing up supper for the 2 of them. I had made a pasta salad the day before and that’s what we would’ve had anyway. Unfortunately, I didn’t feel like eating. I skipped dinner. Me miss a meal?! That’s unheard of. Usually it doesn’t matter how sick I am, I can always eat. Well, this was a special kind of sick. I’m thinking it’s a bad sinus infection. We went to bed earlier than usual and I slept well, all things considered. I haven’t been sleeping very well all week so I really needed it.

I didn’t know if I’d be able to take Elvis to the vet today. But I got up at 7 am and made it over there by 8:30 am. I still feel weak and I’m feeling worse as the day goes on. I’ve had a headache for most of the day. I had planned to rest most of the day when I got back from the vet but that was not to be. The vet prescribed Benadryl for Elvis’ allergies and I had to drop him at home and then go to Jewel grocery store. While there I picked up a loaf of bread (we were out) and a gallon of milk (almost out). After lunch I tried to lay down on the couch but it didn’t make me feel any better. So I got up and worked on this blog post.

My birthday is tomorrow and now all I want is to feel better. ūüė¶ We didn’t really have any major plans, just treasure hunting and go out for a late lunch with Mom to a fish place. We just found it a month ago and it’s what I’m craving. I love fish when it’s fresh and cooked right. When I was younger, I didn’t care much for it. So many things change as we get older. If I don’t feel better by tomorrow, I doubt I’ll be going anywhere. I don’t want to have a reoccurance that I might not make it through. I don’t want sympathy, just some birthday wishes. If anyone else has had anything like this happen and can tell me what it was, please do speak up. If I don’t have a good birthday, at least I’ll have a memorable one. ūüėČ

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I’ve wanted to get on here and write for a few weeks but besides being monopolized by my new Instagram shop, I’ve been having internet/ wifi problems AGAIN. Those aren’t the only reasons why I haven’t been around. It’s been a rough couple of weeks taking care of Mom. I can see her getting a bit worse every day. It’s not a huge difference but it is noticeable to me. I was trying to find humor in it but it doesn’t come as naturally as you might think. I started a top ten list of ways that a person with Alzheimer’s is like a toddler but then couldn’t limit it to only 10! I told you I’d be doing an update here and there so people know what I’m dealing with. Not to get sympathy but just to vent. Last Tues. I talked to my postal friend Doreen in Milwaukee for an hour and a half. That was the first time we’d talked since last April. We used to talk every few weeks or once a month. It’s just really hard to carve out any time for things for myself. I get so many interruptions and distractions while caring for Mom that it’s just easier not to try. This time I did it while she was napping. It was so great to catch up a bit but we both spent time talking about the health of our mothers. She’s 3 years older than me yet her mom is only 80. Mine is going to be 93 next month. Her mom has physical health problems which¬†is no picnic either. As much as I enjoyed talking to her, it was somewhat depressing since I don’t usually vocalize what I’m dealing with.

I find myself having to be more “present” with Mom. I don’t like leaving her in the room alone as much anymore. She doesn’t let me know if she needs help with anything and I have to watch just to see if she’s having trouble with anything. The computer was the babysitter for her for the longest time. She still plays slot machine games but often forgets how to play them. Obviously it’s not hard. I sit behind her on the couch with the laptop in my lap and shout instructions at her. Then when she doesn’t listen or can’t understand, I have to jump up and run over and take care of it for her. The latest thing is she forgets what a “mouse” is. I mean she’s known for 15 years yet now when she runs into trouble, I tell her to move the mouse and she has no clue what I’m talking about. A year ago we had to disable the 2 clicks of the mouse and make it only one because she couldn’t remember to click only on the left side of the mouse! Now we have it so she can “spin” the slot machine game by pushing the space bar on the keyboard. Then she forgets what a keyboard is. Gah! It’s frustrating but not even that big of a deal compared to other things I deal with. She’s fouled up the computer so bad that I’ve had to wait for Greg to get home to figure it out. One day I was working in the kitchen and came to check on her and she had a bunch of other stuff up on the computer screen. Like our picture files and she was also emptying the trash!! That was a little upsetting. As far as I know she didn’t delete our pictures but I could totally see that happening. ūüė¶

When I say Mom’s getting worse, I mean incrementally. I try to have her do as much for herself as she can but I notice she wants to do less all the time. I always have her cereal bowl, juice, pills and banana laid out for her in the morning. I lay out her clothes but let her dress herself. At night when I get her ready for bed, I find out she’s been wearing her bra inside out. When she comes downstairs, she’s always been able to open and slice her banana, put cereal on it and add her milk, etc. Lately, she has tried adding coffee to her apple juice by mistake and claims she can’t open her banana or slice it. So I open it and cut it up. Then she wants me to put the cereal in the bowl and add the milk and carry it in the other room for her. I don’t mind doing it but feel like she still can do it but is being lazy.

My list of ways that a person with Alzheimer’s is like a toddler:

They can’t verbalize their wants and needs. They may point but are unable to let you know what they want at any given time. If they could just ask, life would be so much simpler.

They try to get away without doing what they’re told. You can repeat yourself every 5 minutes or every 5 seconds, they’re not going to do what you tell them to do. Unless you stand over them and make them do it and even then they might put up a fuss.

Their balance is unsteady like they’re just learning to walk. They have trouble getting up and then grab anything nearby (a piece of furniture or the wall) to steady themselves.

They hate baths, haircuts and having their fingernails/toenails cut. They protest and may even fight you. They act like they don’t trust you even though you’ve never drawn blood. They can’t hold their head still when you’re cutting their hair. This leaves them with a less than perfect haircut.

They don’t believe in hygiene. They don’t like washing their hands and think they shouldn’t have to. They never think to do it on their own. They try to do it without using any soap.

They don’t want to finish the food on their plate. They want you to eat it instead. You have to bribe them to eat their food by promising ice cream or some other sweets for dessert.

They love sweets. More so than the rest of the population. If they had their way, they’d only eat ice cream and candy. They can’t come to terms with why that is a bad idea.

When you turn your back, they let the dog eat their food. No matter how many times you tell them not to let the dog eat off their plate or not to give the dog food, they still do it anyway. When you ask why, they say “I don’t know” or¬† “because he wanted it”. This is especially problematic when eating something that is toxic to dogs like grapes or chocolate.

They take naps at the drop of a hat. They spend a good portion of the afternoon and late evening napping. If you’re counting on them falling asleep or specifically tell them to take a nap, they will stay up just to spite you.

They’re oblivious to their bodily functions. The doctor told Mom that the average person goes to the bathroom 6-8 times a day. If I didn’t tell her when to go, she¬†MIGHT go twice a day. I make her go when she gets up, before lunch, before dinner and at bedtime. Sometimes I can get her to go another time if I give her coffee. Even when I tell her to go at these specific times, she’ll say, “But I don’t have to go!” or “I just went 20 min. ago”. Well, I’ve been with her all day and know it was 5 hours ago. It’s so tiresome that we have to do this go around every single time. Her body doesn’t tell her when she needs to go.

They wander off or get into mischief if you’re not watching. Mom doesn’t wander but she does start going into things. She’s curious or doesn’t understand what things are and any paperwork we leave laying around she goes through. I don’t mind since I finally instilled in her NEVER to throw anything away. She went through a spell where she was throwing everything away that she got her hands on. Whether it was hers, mine or Greg’s. I guess it’s a blessing that she’s forgotten where the garbage can is. ūüėČ

They can’t tell time. Mom still wears a watch and CAN tell time but still gets mixed up. If I wake her up from her nap to go to the bathroom before dinner, she sometimes thinks it is bedtime. She is ready to head up to bed at 7 pm. I have to corral her and make her understand that she hasn’t had supper yet.

They forget what you told them 10 seconds ago. If you tell them not to do something, you will have to say it again every 10 seconds until they get a different thought in their head. What’s even weirder is that if we have something to eat and I bring hers in first, then take her plate and bring mine in, she asks where hers is. She can’t remember that she ate it or even was served it just a few minutes before. That’s scary stuff.

They don’t cover their nose or mouth when they sneeze or cough. This is self-explanatory and too gross to go into detail about. I¬† have to constantly tell Mom that there’s kleenex on her right. Or else I run and hand her one. Then I have to tell her not to leave it laying around.

They don’t understand the concept of kleenex. When they get something icky on their hands that they want to get off, they wipe it on anything nearby. Like the strings on the banana, she will wipe on the edge of the counter. Or boogers. EW. I am forever going around cleaning things just to keep my sanity. The toilet seat needs to be cleaned after she uses it every time. If she sees she left a mess on it, she will take her finger and try to wipe it off which just smears it. Then she touches the handle which leaves a mess. One day she didn’t notice the seat was dirty until after she’d washed her hands. Then she was going to wipe it with her clean hand. I stopped her in time that time.

They don’t know how to wipe¬†after using¬†the toilet. They do wipe most of the time but the concept of in front THEN back is lost on them. I sometimes have to physically grab Mom’s arm to keep her from wiping in the front¬†with toilet paper¬†that has¬†shit on it. I worry about her getting an infection from it or worse.¬†I’ve got her using those wet wipes occasionally but I have to supervise. Shouting orders/ instructions which she may or may not listen to.

I’ve never had a toddler, only¬†a relative with Alzheimer’s so I can’t say how accurate my comparison is. It seems like the mentality is the same. Except those with toddlers know that each day, the child will learn more and gradually be able to do more for themselves. I’m on the other end of the spectrum, knowing that each day a little more knowledge¬†is lost. In some ways I feel like I’m doing a¬†disservice by¬†writing this.¬†It seems like things like this¬†should not be told. That acknowledging that they’re happening is giving them power and making them worse. In the meantime, getting this out of my system gives me the strength to cope another day. I want to thank my blog readers¬†for all the support you’ve given me! I will be back soon this week with another post. ūüôā

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My desire to write hasn’t wavered since going to #BlogHer13, yet life seems to keep getting in my way. There’s some days I don’t get a moment to myself and when I do, I’m too tired to do anything but maybe play Candy Crush on my iphone. Sometimes I fall asleep doing that. I had such a favorable response when I wrote about the challenges I’ve been dealing with as an Alzheimer’s caregiver. I decided to share my latest adventures or should I call them misadventures?

 
I’ve been dealing with a lot of other things besides the Alzheimer’s lately like my own health issues, my husband’s diabetes (which is finally under control), going to physical therapy and trying to lose weight. Then add on the stress of looking after another human being and I become crabby and short tempered. Last night was a prime example. Hubby was going to work at 3:30 pm today and working until 2 am. So we went to bed about 12:30 am and were going to get up at 8 am which is sleeping in for us. Instead at 3 am, I¬† heard my mom up and moving around. She usually stays in bed until the morning. So I got up to investigate and she was using the toilet. Of course, then I had to make sure she got back in bed. She was fussing looking for an incontinence pad which I keep by her bed. Instead she was looking in all her drawers and I asked her what she was looking for. She said a pad so I gave her one. Then I asked her why she was putting that on since she wears a diaper to bed now. She said she was getting up for the day!! It was a little more than 2 hours after we went to bed and dark as a sack and she was going to get up. I had to yell to make myself heard (since she didn’t¬†have her hearing aids in) and I ended up swearing a blue streak. ūüė¶ I told her it was the middle of the night and to put a diaper on and get back in bed until I wake her. I’m not proud of how I lost my temper and then she says to me, “What happened to you? You’re not the same person anymore.” Gah! I said something like, “I could say the same about you!” I hate what Alzheimer’s has made me become. I hate what it’s done to both of us.
 
That’s only the half of it. I went back to bed and had a headache and couldn’t sleep after that. Then at 6:30 am, Ivy was screaming in her bed. We put our 2 dogs, Amber and Ivy, in their kennels at night only. Ivy usually cries in the morning as soon as she hears us up. Amber we never hear a peep out of. Anyway, this screaming of Ivy’s only happens when she’s sick in her bed and wants out. It hasn’t happened for many months. I don’t know what could’ve made her sick but maybe she ate something outside in the yard. Hubby went down and let the dogs out and Elvis stayed spooning with me in bed. Hubby came back to bed after taking her kennel outside and cleaning it. Ivy came and layed in bed with us too. Before 7:30 am, my mom was up and dressed and going down the stairs. I can’t let her get up on her own anymore and can’t seem to keep her in bed. Luckily this isn’t an everyday occurrence since I’m functioning on the level of a zombie.
 
I lay our cereal bowls out on the counter the night before along with her coffee cup and her banana. Inside the cereal bowls I put our morning pills. For me, it’s just¬†a blood pressure pill and a multi-vitamin. For mom, it’s a different blood pressure pill, Plavix, a multi-vitamin and an incontinence pill. Hubby has 2 blood pressure pills, a diabetes pill, a man’s multi-vitamin and¬†a fish oil pill. Ideally, in the morning, I get up and come downstairs to get mom’s hearing aids and glasses. I take them off her at night before she goes upstairs to bed. I had to do this after one night she put her hearing aids in a jar of hand cream. To her credit, the 2 jars¬†were similar in shape. Then I go put them in the bathroom, open her door, pull back the covers and help her out of bed. She walks to the toilet and lifts her nightgown and I give her the last push so she’s in front of the toilet before she takes her underpants down. Then I give her her glasses and put the batteries back in her hearing aids and put them in her ears. Then I repeatedly take her left hand off her leg as she keeps reaching to scratch it. I repeatedly admonish her not to scratch it. In my last post I mentioned how this is the bane of my existance. She has skin ulcers from congestive heart failure and won’t stop scratching long enough so they can heal. I keep them wrapped but she undoes them as soon as she gets the chance. Usually when she’s sitting on the toilet or when I’m busy out of the room. Even if she leaves them alone for most of the day, all she needs is a 5 minute session of scratching to undo all the healing and get it bleeding. At times I give her a pill for the itching but it puts her to sleep for the entire day and it’s even more like she’s not even here. Even if I keep¬†her on the pills constantly, when she wakes up in the morning or in the night when I’m not right there, she can do a lot of damage before the next pill gets in her system. It’s such a quandry that there doesn’t seem to be a solution to. I need to invent something where if she even touches her leg, a huge buzzer goes off that scares her and alerts me that she’s at it again!
 
Getting back to the pills at breakfast. One morning about a month ago, hubby went down with her and gave her her glasses and hearing aids and while he was testing his blood at the counter, he looked over and she was pouring HIS bowl of pills into her mouth. HOLY MOTHER OF GOD. I was upstairs and I heard him yell, “NO!” at the top of his lungs. He caught it in time and had her spit them back into the bowl and then he took them. Yes, ew. But I haven’t been able to get it out of my mind what¬†could’ve happened¬†to her if she had taken them. We’d have to get her stomach pumped or she’d have some sort of incident, no doubt. Now I put a paper over hubby’s pills in his bowl. She asked me the other day what that represents. I told her,¬†“It’s so you don’t take his pills by accident!”
 
We’ve been fortunate to have a very mild summer this year. Temperatures have been lower than normal and we haven’t had to use the air conditioning hardly at all. Not only is that good for the wallet, it’s good for my sanity. I love having central air conditioning but after a few days, I start feeling suffocated. I love having weather just cool enough to have all the windows open and fresh air circulating throughout the house. I prefer it. The week before #BlogHer13, we had a week straight of hot weather in the 90’s. We HAD to put the a/c on or we’d perish. One day, hubby and I came back from shopping. We’d been gone a few hours and came home to find the back door wide open. We have the Magic Mesh screens which are perfect for the dogs. Our backyard is fenced in so¬†all 3 dogs¬†can come and go to the bathroom as needed. They can also run outside and chase squirrels or just lay on the deck and come in for a drink. When the a/c is on, we feel like slaves to them since one or the other wants in or out all the time. Rarely together. My mom had opened the back door for the dogs without remembering that the a/c was on. I’m proud to say that’s one time I didn’t get mad at all. I just explained to her that we had it on and shut the door. It always irked me when we went on vacation to places like New Orleans and the businesses have the a/c on full blast (stores feel like they’re chilling meat inside) and the doors to the street in the French Quarter sit¬†wide open. I can’t imagine how much money that costs but I know I don’t have nearly enough to pay for that type of luxury.
 
The bath adventures have been interesting. Yesterday’s bath went better than they have in ages. Last week Mom said to me, “Have I ever had a bath like this before?” To which I replied, “Yes, every week for years.” I have to stay in the bathroom and shout directions to her. “Wet your face with the washcloth, now put soap on your face, now rinse with water.” I do this for every part of her body so she knows what to do next. It’s exciting stuff but I manage to contain my enthusiasm. Then she has me wash her back and says she hasn’t had it washed in ages. Yes, since the last time I did it. It’s very selfish of me to want “credit” for things I do for her but it feels like if she doesn’t remember I did them for her, it doesn’t count. I guess knowing I did should be enough.
 
Last week was my birthday. We had talked about going out for dinner one night but never did. One reason is we’re trying to lose weight and it’s easier to control the calories and eat healthier at home. The other reason is we asked my mom if she’d go out with us for my birthday and she didn’t want to. She doesn’t like going out of the house at all anymore. She used to go along when we’d shop and get one of those 3 wheel mobility carts the stores provide and have a gay old time¬†zooming up and down the aisles while we shopped. Now she turns down all offers to go out. We’ve got a vacation coming up in a few weeks and it’ll be interesting to see if she pulls this while we’re away from home. Of course, we could’ve gone out to eat without her but have only done that once or twice in the past decade! It just doesn’t feel right to be without her. So we had a day like any other day at home. I figure we’ll live it up some on vacation.
 
It’s an odd world we live in when my own mother asks me “How old are you going to be?” Half the time she doesn’t know if she’s 90, 92 or 93 so I guess I shouldn’t be surprised. It’s just something you’d think she’d never forget. Then I asked her, ‘How old do you think I’ll be?” She first answers, “I don’t know” and then, “You’re 6 years younger than me, aren’t you?” That’s an interesting feat of science there. I remember a few months back, maybe around her birthday in April, I had asked her “How old were you when you had me?” and she said “24.” This wouldn’t be strange at all except she was 41. Has anyone seen the Serv Pro commercial? They’re the company that cleans up homes after a fire, flood or other disaster. They use a slogan for their business that could easily apply to Alzheimer’s. Like it never even happened. So I’m hanging in there, using my blog to vent since I don’t have another outlet where I can get my frustrations out. Just taking it one day at a time and counting my blessings, even if they appear to be fewer and farther between. ūüėČ
 

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Up until this point in my life, everyone I’d known that has died did so while still in full control of their faculties. Whether it was natural causes, heart attack, stroke, suicide, etc., they were able to be recall the majority of their life experiences, up until their demise. I’ve been agonizing about whether I should write the story I’m living. I don’t know if there is anything to gain by sharing this but I feel compelled to do so.

 
The past 15 months has been a new experience for me. Dealing with an aging parent can be hard in itself, seeing their bodies become slower and more health problems surface. Dealing with a parent that has Alzheimer’s or Dementia is a whole other level of difficulty. I hadn’t really given it much thought what it would be like to live to a ripe old age and slowly, piece by piece, lose parts of your mind and memories. Of course, I’ve been fully aware that Alzheimer’s existed. Hearing about it on the news or even reading about it is¬†totally different from seeing it on a daily basis.
 
I’m a strong believer in the saying, “Charity begins at home.” I’m not against helping others, friends or even¬†strangers but feel that we should move heaven and earth to help out the family in our household first and foremost. We need to care for our own people and not leave the job to someone else because it is unpleasant, time consuming or emotionally trying.
 
All my life I’d wondered how anyone could put a loved one in a nursing home. My grandma (my dad’s mother) would’ve been 135 years old on 7/7/13. She died at age 93, when I was 9. I figured out then that our tiny house was too small for 2 adults, 4 kids and an aging grandma. She had lived about a block down the street until the time came when she must’ve broken her hip and went into a nursing home. My¬†(now deceased)¬†aunt had gone into “assisted living” after she decided to sell her house. For years I wondered why she couldn’t just live with one of her 2 daughters. One was widowed with 2 older kids and didn’t work. The other¬†was divorced and lived alone. I swore that I would always have my mom with me, no matter what. It’s funny how life has a way of making us look like idiots when we get self-righteous or judgemental. The very thing we judge someone else for could very well happen to us.
 
I don’t have children but I assume caring full time for a 92 year old is similar to caring for a toddler. Except the toddler moves faster. As hard as life is every day, I’m blessed to have her with me. I just wish I had HER with me. The body/ shell is here but the person she was no longer exists. She had a mischievous sense of humor that made everyone say she was a real character. That is all gone. Her personality and everything that made her what she was, is long gone. It left slowly at first, then more rapidly. It’s¬†one thing¬†to forget something like a restaurant¬†you only went to once, 10 years ago. It’s quite another to forget the last 30 years of your life. No one gets to pick which memories are stolen. It would be ideal if a person could actively forget all the painful memories and hurtful events of the past. To lose memories you at one time cherished is just plain cruel.
 
“When are we going home?” is what my mom asks every day. With all the patience I can muster, I say, “We ARE home.” When I ask her where she thinks we are, she says, “Elgin.” That is where we store our RV. So I ask her if she thinks we’re in the RV now and she says “Yes.” When she asks again later, hubby will say, “Tomorrow.” Then she’ll ask again later, “Are we going home tomorrow?” It is maddening and infuriating and beyond sad.
 
All my life, just about my favorite thing in the whole world was talking to my mom. Having long, heart to heart talks. Deep conversations where no subject was ever off limits. She always listened and offered advice or support, as needed. She shared stories of her childhood and life experiences. Now she is practically non-verbal. She doesn’t like to talk or be talked to. She doesn’t answer very often, no matter how many times I ask her something. Or she answers with something non-related. I thought for awhile it was because she didn’t hear what I said but have realized her cognition is lacking. We may be in the same room for hours and not speak. I try to engage her but no comprende.
 
She was always stubborn but now fights me about things like going to the bathroom and not picking her legs. Her body doesn’t signal her when her bladder is full so I try to time it about every 4 hours or so and remind her to go to the bathroom. She never thinks she has to go and doesn’t want to go. I have to always keep in mind when she went last and if she refuses to go before dinner, make her go immediately after dinner. This is so odd for me since all my life she’s been self sufficient. Up until early 2012, she was washing her own clothes! Then one day, she forgot how to run the washing machine. I showed her and helped her load her clothes. Then the next time, she had no interest in doing it herself so I’ve been doing it. I don’t mind. She doesn’t know where her clothes hamper is in her bedroom even though she’s had it for almost 18 years. She has always been extremely independent, wanting to do for herself. That is all over. Now she doesn’t want to do ANYTHING. She also used to have a bossy streak and would tell me what to cook for dinner or what dessert she was hungry for. Now she doesn’t care what she eats.
 
The doctor told me I’m expecting her to behave like she used to and that’s not going to happen. The greatest source of my frustration is trying to keep her from picking her legs. She has skin ulcers from congestive heart failure and they would heal if left alone. At the doctor, I got her some pills for itching. If I give her one, she sleeps ALL DAY but she doesn’t (usually) pick her legs. I’ve told her 100,000 times (no exaggeration) to not pick her legs. I put Neosporin on them and keep them wrapped up (I use paper towels instead of bandages¬†because I’d go broke) and taped on. One was completely healed and we got the other almost completely healed. Then she started on the good, healed leg and now both of them are bandaged. It is more of a habit than anything but she either can’t remember not to pick them or doesn’t care. She does the most damage when sitting on the toilet. I don’t want to have to stand over her while she uses the toilet. In the mornings I wake her and give her her glasses and hearing aids. I do this as soon as I get her out of bed and walked to the toilet. She can’t leave her legs alone while I’m standing there OR after I walk away. I’m about to lose my damn mind. Short of handcuffing her, I don’t see a solution. I’m still afraid she’ll end up losing¬† her legs if they get too infected.
 
I’d heard about people with Alzheimer’s wandering but she won’t leave the house on her own. She can’t walk far distances¬†so I don’t have that to worry about. A few times lately, she has gotten up super early, gotten dressed and come downstairs on her own. Like at 5:30 am!! I’ve told her to stay in her room until I get her up. She also comes down in her housecoat the day after she gets a bath saying she thought she was going to have a bath today. Then on the day of the bath, when I tell her to put her housecoat on and come down, she’ll get dressed anyway. If I’m not watching her, she’ll head off to bed at 8 pm, not knowing what time it is and thinking it’s later than it is. She can still tell time, as far as I know, and wears her watch every day.
 
She doesn’t remember most of her possessions, jewelry or clothes. I’ve found her going through her jewelry box almost every night (or morning) and looking at everything like it was the first time she saw it. She also does that with every drawer in the house, every pile of papers, etc. She picks everything up and looks at it like it’s new to her. Over and over this happens. Same with certain clothes, she’s shocked to find out they are hers, even though they are hanging in her room and she’s worn them many times.
 
It breaks my heart that she can no longer remember how to sew. She was a prolific seamstress, even doing it professionally after retired. She made her own clothes and mine in the past. Halloween costumes, curtains, dog beds, there isn’t anything she couldn’t make. It was her passion and kept her going. I remember when I was working nights years ago and sleeping in the daytime. It was so hard to sleep when it was light out. The most comforting thing was hearing her sewing on her machine on the other side of the wall while I laid in bed. It lulled me to sleep and anytime I heard her sewing, I knew all was right with the world. All is not right in my world, anymore.
 
My mother was always an incredible housekeeper. I can’t say the same about myself. She always “looked like she’d just stepped out of a band box” (one of her sayings). She wanted everything clean and was strict about everyone washing their hands. I’m vigilant about handwashing too but now she’s let hygiene go by the wayside. She has to be reminded to wash her hands or she won’t do it! EVER. I feel like I’m the gestapo having to police her every waking moment.
 
The 2 things she answers to any questions I may ask, “I don’t know” and “I can’t!” These both burn me up. The funniest thing is that when I was growing up, she INSISTED that those weren’t answers. I was never allowed to say either one. I had to KNOW WHY I did things and keep trying to do things I might think I couldn’t do. She can still feed herself (with a decent appetite) and dress herself so there’s that. We keep her occupied most days with playing casino slot games on the computer. A year ago our computer crapped out and we couldn’t go long without one simply because there is no other way to keep her busy. She doesn’t want to do much else. She’s always done well with the games and for awhile I thought they kept her mind sharp. Now she’s having trouble remembering to click on the LEFT side of the mouse. I’ve told her 10,000 times (no exaggeration) and she still clicks with her right ring finger (not index). She ends up screwing it up and opening all kinds of other applications and programs on top of what she’s supposed to be playing. This is well and good if I am home (in the room). She no longer calls to me for help EVER even though I remind her all the time to just call me if it gets fouled up. Then I was afraid she forgot my name. She always called me Kitty. I asked if she knew who I was and she said “You’re my daughter.” So I told her to call out “Daughter” but she still won’t call out for help. I may have to get her a bell to ring like the drug dealer’s grandpa in “Breaking Bad” (season 2). She would probably forget how to ring it or what it was for. I’ve been lucky to be able to go on a half hour walk with the dogs while she amuses herself playing. Now I’ll come back and the game will be all messed up on the screen. It’s not a big deal in the realm of things but it makes me realize it won’t be long and I won’t be able to leave her at all. Hubby keeps reminding me that it will only get worse. Gee, thanks for that.
 
This is only the tip of the iceberg of what I’m going to be dealing with in the future. Now that I’ve broken the ice with this post about it, I’m expecting to do further updates here. Now that I’ve thoroughly depressed myself and everyone on the Internet, I’ll move on to another topic next time.
 
I still have no plans to ever put her in a nursing home but I’m starting to understand why others in my situation might. It really is all consuming. The emotional wear and tear on your heart and soul is palpable. I’m feverently wishing for a cure for Alzheimer’s/ Dementia. Hopefully, in 20 years the entire baby boomer population won’t have to go through this. I fear for myself. That I’ll end up with it as well and have no one to care for me or about me.

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Into every life, a little rain must fall, right?! A little is the key! I’ve had enough rain to last me a lifetime. I’m over my quota so it’s someone else’s turn. The Powers That Be seem to think my life doesn’t have enough stress. So last week Wed. (June 26th) our basement flooded again. ūüė¶ It had only been two months since the last time! That’s some kind of record. Early that morning a heavy rain front had come over our town and just sat there. We got about 5″ of rain in a short amount of time. We’ve been getting a lot of rain this year¬†and have only had to water the garden ONCE. That’s unheard of. Usually I’m out watering every single night. The roads were like rivers and hubby couldn’t get out of the driveway to go to work. First he called his boss and said he’d be late. Then after a few hours passed and the street still wasn’t clear, he emailed her and told her he was taking a sick day. It would be nice for him to be off under other circumstances. In this case, we’d both rather he went to work than have the basement flood again. It basically ruined the whole weekend. The city put out barricades so people wouldn’t drive on the flooded streets and that was it. The sewers can’t handle the excess water and back up (it’s fairly clean rain water but still) which gets SO OLD. We got about a foot of water in the basement. After a couple hours, hubby unscrews the standpipe and the water goes right down. Then we had to suck up the rest of it with our rug shampooer. Then shampoo the rug. It just never seems to end. I had clothes hanging down on the line which made it inconvenient. It’s better than one time when I had all the dirty clothes spread out in piles on the floor, ready to wash.

 

Flooded street in front of our house

Flooded street in front of our house

Hubby’s been on his diabetes meds for just over 2 weeks and he still hasn’t got it under control. He is still taking readings 3 times a day and the best of the 3 is 2 hours after lunch when it is almost normal. It doesn’t make a whole lot of sense to us why it’s high when it is. I guess we’ll learn more over time.
 
My foot and legs have gotten a LOT more painful, just in the past week. This morning I woke up and it felt like I had polio. I could hardly walk. My foot was better but my right ankle wouldn’t bend. My legs are stiff and I feel hobbled. It is so discouraging to me. I am anxious to hear what the orthopedic specialist says next week. Yesterday I cut the dogs’ walk 4 blocks short. Today I did the whole thing but so much slower than usual. Plus it hurt like the dickens. Today is the first day where I can believe I’ll end up in a wheelchair someday. Of course, if I have anything to say about it, it won’t happen.
 
Friday we got a phone call with bad news from my mother-in-law. Greg’s older sister Linda’s cancer is back. She’s been in remission just under 3 years. She had such a bad bout with the chemotherapy for hairy cell leukemia in 2010 that we don’t know if she’ll go through that aggressive of a treatment again. She’s the strongest person we know and is a registered nurse. We support her no matter what she decides to do. She is leaving on a family vacation with her husband, daughter and son-in-law out to Seattle on July 5th. They are visiting her other daughter and her husband. She didn’t want to give up her vacation to start chemo since she’s afraid it might be her last trip and she was looking forward to it so much. Her immune system is compromised due to the cancer. Let’s hope she has a wonderful time on her vacation! This news was just another reminder to make the most of each day we have, even if they’re shitty ones.
 
I haven’t gone into detail about how my home life¬†has changed since¬†Mom’s dementia has gotten worse. I will probably write about it at some point. In the meantime, I’m going to include an incident here that happened on the day we flooded. I make my mom take a bath once a week. I try to do it while hubby’s at work. I’d planned to do it Wed. and then he ended up being home which turned out to be a good thing. We don’t have any special contraptions for the bathtub like railings or a walk-in or even a chair in there. It is just a regular tub. Mom’s always been able to get in and get out on her own. The past several months I’ve been getting everything ready for her. Filling the tub (she can’t regulate the water temp), getting towels ready, her bathbrush and washcloth, soap, etc. Then I pick out her clothes for after the bath. I draw the bath and help her get in. I put the toilet lid down and sit there and watch¬† her. I make sure she washes her whole body. To get in, she kneels down, facing the back and then turns on her side and then onto her back and then sits up. The last few times she’s been balking when it’s time to get out. She has to do the exact same thing in reverse. She starts yelling, “I can’t!” and then I tell her she can and explain how to do it. Last week she wouldn’t get out. She said she couldn’t and tried a few times and gave up. I can’t lift her out of the tub and I was kind of freaking out. All I could think of was that I’d have to call the ambulance to have them lift her out. Hubby heard us yelling back and forth (Mom’s deaf and her hearing aids are out so I have to yell) and came up to help. Bless his heart, he came in and helped lift her out. It was a living, breathing nightmare that was reduced to such relief.
 
This past weekend we were at an estate sale and they had these suction grip handles¬†for the bathroom. One was in the package, the other looked new and was out of the¬† package. We got them both for $5. We are going to try them this week on the wall and top of the bathtub so Mom has something to grab to get out of the tub. I hope it works! It will make my life a whole lot easier! This is just ONE thing I deal with on any given day…the fact that it happened on the day we flooded was almost too much to bear.
 

Super Grip Handles for the bathtub

Super Grip Handles for the bathtub

Also on Wed. there was a message on our answering machine.¬†Hubby and I had walked the dogs that afternoon to see how much water damage was in the neighborhood. It was Gottlieb Hospital calling to say that I’d had a mammogram on the 13th, something had looked suspicious¬†and they needed me to come back for more views. My heart stopped before I even heard the rest of the message. For one thing, my doctor’s office had called and I’d had to call back the week before and they’d told me my mammogram was normal. For another, I’ve had to go back for more views a few times in the past (before they went to digital mammos, I think) and every time, they’d sent a letter, never called! I figured this was more serious if they were calling! The woman on the phone then went on to say “Wait a second, you already came back once.” I’m standing there listening, still in awe. I hadn’t gone back. Then she goes on, “Let me call you back, I think they gave me the wrong information. You are fine. You are to come back in one year.” Finally she said “Let me finalize this and I’ll call you back.” Of course, she never did call back!! That hospital is seriously fudged up!! I knew someone screwed up but still, how many things can they get wrong?! The answer: ALL OF THEM. I’ve been lucky not to really need much health care in my lifetime. It was just frosting on the cake of the day I had. Just call me Lemony Snicket. My life is A Series Of Unfortunate Events! ūüėČ
 
So I don’t end this on a glum note, I have to tell you about the highlight of our weekend. On Saturday, our dogs had an impromptu playdate with a Shiba Inu named Asher. He’s 4 years old and weighs 48 lbs. He used to be 53. My Amber just turned 5 yrs. old and weighs 21 lbs. We’d met Asher and his human family a few times before and they’d played while on leashes. We were walking our furkids in front of their house and they came out and told us to wait. They all came out and brought Asher. He is a sweet dog but because of his breed, he gets afraid of other dogs and sometimes acts aggressively. It is only because others don’t understand how he is. He needs more socialization with other dogs but nobody else wants to take the time to let their dog go up to him SLOWLY. Amber is the same way. While Elvis and Ivy run up to anyone and want to be petted and kissed or play with other dogs, Amber has to be held back a few seconds. She has to just stand and look at the other dog and get used to him/her. Then I slowly let her get close and then she’s fine. Asher’s family wanted me to take just Amber in their backyard to play with Asher. I went but Amber wanted her brother and sister and didn’t know what to do. They were fine together but Amber wasn’t in the play mood. Then I came out with her and Greg took Elvis inside while the aunt held Ivy on her leash. Elvis loved it and was running like mad with Asher. He then came up to the gate and was looking at us wondering why we didn’t go in. So then we all went in and all 4 dogs ran loose and played and had a good old time. Asher really took to Elvis but then who doesn’t?! Neither Greg or I had our iphones with us but both of Asher’s parents, his aunt and grandma all were taking video of them playing. It really lifted our spirits and was so much fun. The dogs loved it and we loved it. I could’ve watched it all day! They told us several times to come back anytime. That we should ring the bell when we’re walking by and they can play again. Maybe we’ll have to do something like that over the holiday weekend and make sure we get some pictures or video!
 

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