Posts Tagged ‘#nightmare’

I can’t believe it’s been almost 7 months since I blogged. I lay in bed thinking about it every night. It’s hard to get back into it but I need to have an outlet. Even if it’s for my own personal reading at a later date, it needs to happen. Since July, things have been “ok”, “not so good”, “awful” and most recently TERRIBLE. I know I have a flair for the dramatic and that while things are happening they seem to be exponentially worse. But the last 2 months have brought life to a new low. 

I don’t know where to begin so I’ll briefly sum up the last half of 2019. In August we went to Green Bay, WI for a week’s vacation. It was great! We did everything we always do and had a great time. So much so that we went back for a week in October. That was also a good time. Our annual trip to Tunica, MS was a bust. We were there for over 3 weeks. It sucked. One of the casinos next to the RV park we stay in had closed for good before we got there. When we first started going there back in 1998, there were 13 casinos within a few miles. Now they are down to 6. The whole area is dying and depressed. Being there was a drag. The people who 2 decades ago were “southern friendly” are now indifferent. The casinos used to give away so many free gifts, free slot play, free buffets, free hotel rooms/rv sites, etc. They now give away nothing. It used to be a nice break from reality to be able to gamble on slot machines and only lose a small amount of money. Now no matter how much you bring, it’s never enough. You can’t make your money last, let alone win. Hubby did win a drawing for $500 free slot play at Sam’s Town but that didn’t last long. We did a lot of soul searching and we’re not even sure we want to go back to Tunica again. It’s sad because it’s been our tradition. While we were there the weather was excessively cold. It used to be in the 70’s when we got there and have daytime temps in the 60’s. Many days were in the 30’s while we were there. Then our heat quit working. We had to go out and buy a portable heater. That helped but then the heat started working again. We’ve been having more problems than usual with our RV and had been looking to get a new one. A newer USED one since the prices are ridiculous. We looked at several dealerships and they all had very little inventory. The prices were high and the layouts were not what we wanted. Now we’re trying to decide if we even want to continue RVing. Everything has turned into a huge hassle… We had planned to go to Tunica over Christmas like we’ve done the past few years. We were so turned off, we cancelled it and then were thinking of going somewhere else. The weather wasn’t cooperating but for the most part, we were dealing with too much else in December.
As I’ve mentioned before, our family doctor died a few years ago and we started going to a new doctor. In August I had been a full year without a period. Then when we went on vacation, I had a period. It was a full period that lasted about a week. I hadn’t had any bleeding since.  I had been overdue for a Pap smear but Dr. Z just didn’t seem like the type to do it. As I’ve also said before, he doesn’t care about women’s health. I called to make an appt. for myself and my hubs. I was trying to get a Thurs. before we left on vacation in Oct. I called a few weeks in advance but they were trying to get us in while we’d be gone. I told “Jen” who answered the phone, we needed to come on a certain week. I had first asked “Does Dr. Z do Pap smears?” and she said yes. So she squeezed us in for 3:15 pm on the Thurs. I wanted. I thanked her by name for squeezing us in and then said “I’ll see you on XXX X at 3:15 pm”. I am very squeamish about having pelvic exams. I had some bad experiences with doctors when I was in my early 20’s. I’m also fat and don’t like taking my clothes off. I knew I could get through this since at least I’ve seen this doctor in person more than a few times. I took a bath the night before and then we ran some errands the morning of the appt. and I took another bath right before leaving to go get examined. I’m self-conscious and want to be clean enough. Then we get there and the waiting room is packed, standing room only. I go up to the glass partition to tell them we’re here and they say, “no, your appt. is for 2 weeks from today”. I told them I had talked to Jen on such and such a date and that she squeezed us in. I asked to speak to Jen. “She’s with a patient”. So we can’t get in that day. Both hubby and I were hopping mad. We told them to cancel the fictitious appt. that they had us down for and we made another appt. for after the first the of the year. Then right before we were going to leave for our Thanksgiving trip, we were trying to get our prescriptions filled. Hubby needed one of his blood pressure meds and I needed my thyroid meds. After dealing with the pharmacy, we called the doctor’s office to find out why they won’t refill the prescriptions. They said not until he sees us. Our old doctor would refill as long as he had seen you in the last YEAR. This guy can’t go 6 months without seeing us in person. So we had to make an appt. and hubby had to go without meds and I had to go without my thyroid meds for 10 DAYS! This isn’t like they didn’t know we were out of meds. Some doctor’s offices, if you have an appt. made, they will give you a month’s worth to tide you over. Not this jerk! So this appt. was supposed to be for a Pap smear and then meds refills.
I told the doctor what had been going on with the one time bleeding and he said he couldn’t do the Pap smear. That anytime you bleed after menopause was serious and I needed to go to a specialist. He gave me the name of a doctor  (Dr. B) that his wife goes to in the same hospital. Then the nurse came in to take our blood. I had her take it out of my hand (visible veins) with a baby needle and she still missed the vein!! I should have asked if she was “Jen”. So that was twice I had been mentally prepared (& physically) to get a Pap smear and it didn’t happen. So I called to get an appt. with Dr. B which was Thurs. Dec. 5th. The exam went ok but I found the doctor VERY AGGESSIVE. I had hubby in the room with me. The doctor said he thought the one period was just “the last hurrah” of an old egg. I believed that, too. Then he said “to be sure, you need to have an ultrasound to check the thickness of your uterine lining”. If it is more than 4 mm, there was a 5-8% chance it was cancer. I thought those were good odds. I told him I felt more comfortable waiting to see if I bleed again and then coming in. I told him “I don’t believe in having UNNECESSARY TESTS”. He turned into a bulldog at that and said that to him, it wasn’t unnecessary. I said I should be the one to make that decision and he said no! He’s the one who decides. I was appalled. He could tell I was not happy. It reminds me of all the testing for cancer hubby had in June/July 2018 that turned out to be nothing. Hubby agreed with the doctor which I didn’t appreciate. Then Dr. B went on to say that the ultrasound was no big deal and they did it right here in the office. So I reluctantly agreed. I assumed I would come in after the first of the year for it. I went up to the window in his office to make the appt. and NO, it had to be done within a week! It also couldn’t be done in his office (he was overbooked) so I had to go to the hospital imaging area for it. I went home and called the number on the sheet and got an appt. for Friday the 13th. I’ve never had a baby so I’ve never had an ultrasound. It turned out to be 2 different ultrasounds. One of the pelvis (outside the body) and one inside the uterus. Good God, both were incredibly painful. I don’t think they are supposed to be but the woman from India who did it was pressing down so hard, it felt like a piece of metal pushed onto me. I think she was afraid it wouldn’t register through my fat. She did the outside one first and that was painful but I didn’t let on. Then for the inside one, she took what looked like a toilet brush and put a clear plastic bag over it and a pound of lube and pushed it all over my insides. That was more uncomfortable than painful but I wouldn’t want to go through it again. Dr. B had me schedule an appt. with him for the 17th to go through my ultrasound results. At that time he said my uterine lining showed it to be 6 mm. He went into a speal about how “extra body fat often leads to uterine cancers”. I was so mad because I felt like he was treating me like the only fat person on earth and if you haven’t looked around, most people are fat. I didn’t say anything but was pissed. He told me he wanted to do an endometrial biopsy in 2 days. I had heard that they are VERY painful and asked him if this was so. He said, “they can be”. He said they have to open the cervix and then fish in a “pipette” which looks like a long white pipe cleaner that has a drill on the bottom that is twisted into the lining. I asked him if it isn’t harder to open the cervix if you haven’t had a baby. He said “very much so”. I had spent most of the month reading scary shit online which I don’t recommend. He gave me a prescription for 2 pills. One to be taken at bedtime and one in the morning. They were Misoprostol 200 mcg. From what I read this is what you are given to abort a baby. My appt. was for 1 pm on Thurs. Dec. 19th. Believe it or not, I slept the best I’ve slept in months the night before the procedure. I woke up in a good mood and not worried. I knew I would survive it and it wouldn’t last long. He came in and gave me a shot to numb the cervix. Hubby later told me “good thing you didn’t look because the needle was this long (gesturing with his hands apart 6-8” aka HUGE)”. The doctor had also had me take 3 Advil before the procedure. I could feel what was happening but I just kept myself relaxed and knew it would be over soon and it was. It was still an unpleasant experience. The doctor said it went well and inside my cervix was mucus type liquid that may have been what made the lining look thick on the ultrasound. He said it may be up to a week to have results but he may have them Monday and would call right away. This was before Christmas and all I could think of was how nice it would be to get an all-clear as a Christmas present. Well, we waited and finally got the call the following Friday Dec. 27th. I missed the call and he left a voice mail that everything came back normal. I don’t have to come back unless I have bleeding. This should have been good news but instead it was ant-climatic. I felt like I’d gone through all of that for nothing. Just as I suspected would be the case. Not that I want to be proved wrong by getting cancer but the guy was just too aggressive for my tastes. One incident should not be that alarming with no family history of gynecological disorders.
The main reason it was so anti-climatic was that something awful happened on Dec. 3rd to my husband. I’m not allowed to talk about it. Believe me, I HATE when people say that!! I believe don’t bring something up if you can’t get into the details!!!!!!! But this is such a major, life-altering thing that I can’t pretend it doesn’t exist. All I can say is it was one of those right place, wrong time things. It was bad enough on its own but then the situation escalated several times. Hubby had a bunch of use-or-lose vacation and he took it from Dec. 17th (the day of my ultrasound results appt.) until Jan. 6th.  We stayed home because the hookup for the turn signal and brake lights from the Jeep to the RV quit working and we didn’t have time to get it in to the dealership for repair between our Nov. trip and leaving so soon in Dec. But we were in no mood to travel anyway. We stayed home and dealt with my health issue until we got the all clear and the rest of the time dwelled on the horribleness that is our lives now. Basically worrying ourselves sick because everything is out of our control now. Hubby is a little more than 4 years from retirement and he is ready to walk away any minute. But it would do no good until this weight is off us. It was an agonizing vacation. Since hubby went back to work, things are no better. I hate to be so cryptic but all I can say is it’s demoralizing. You live your life right, keep to yourself, work hard, don’t bother anyone and then one day you encounter evil in the form of a person. Twelve years ago this summer we were living a similar but different nightmare. I’m sorry that I’m unable to go into this with you. It would bug me if someone else wrote this and didn’t say what it was. As soon as I’m able, I promise to tell you all about it! In the meantime, I am hoping to blog more since I need somewhere to vent.

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It’s been awhile since I’ve written about the demon that’s invaded our home. It’s called Alzheimer’s. A few weeks ago, I was telling hubby a small fraction of the day I’d had dealing with Mom. He looked at me and said, “You should either make a standup comedy routine out of this or write a horror story.” He’s so right, I could go either way.

In horror stories, usually the demon has to be invited in. With Alzheimer’s, no invitation was issued, nor was an RSVP received. Talk about an uninvited houseguest. This one comes and never leaves until it’s sucked the life out of you. Most demons take your soul but Alzheimer’s steals your brain, not just the mind that holds memories but the entire organ including the first things we learned how to do to function. Like the ability to comprehend speech, let alone answer. The ability to form words or sentences. To sign your name. To recognize loved ones. To recall the name of things. This demon alters the possessed’s personality and hijacks their emotions. Nothing can make the person happy or sad any longer. They just exist to hold the host demon inside for it to feed off of…

Things have been “progressing nicely” if your goal as the demon is to liquify the brain completely. The decline is rapid and thorough now. I always felt as long as Mom had a good appetite and still ate, she’d hang in there. The past week or so, she’s been having trouble eating. She does fine with her Cheerios for breakfast but lunch is another matter. I’ve always made her a sandwich, same as mine, but lately I’ve been cutting it in 6 or more pieces instead of just 4. Even so, some days it takes her OVER 2 HOURS to finish it. Then she won’t have finished it. She’ll have a huge glob of food balled up in her mouth and just be chewing it (no teeth). Sometimes I wonder if her entire sandwich isn’t squished up into 1 piece! She won’t swallow it and if I let her, she chews it for hours. Lately I’ve gotten her to give it to the dog, Elvis. I have her push it out of her mouth and he takes it from her. I’m surprised she does this since it’s almost like “kissing” a dog which she would never do. One day I served her lunch, went back to get mine and when I came back her plate was empty. I asked if she’d let the dog eat it and she said “I don’t know.” We’ve had to put Elvis on the leash while she eats since he’s deaf and he waits for her to spill. It’s maddening. The alternative is she spits the food out onto the floor (which I’ve seen her do).

Everything gets exponentially harder daily. Yesterday was bath day which is always the hardest. She doesn’t listen to me hardly at all anymore. I don’t think she’d listen to anyone else any better. It’s gotten to the point where I can’t leave her alone much. Obviously I have to at times, just to cook meals and do household chores. I can’t trust her to follow through on things I tell her. Like I used to just walk her to the bathroom (holding hands) and leave her, maybe check on her once while she was in there. Now I have to walk her and stand in the doorway while she goes. I have to keep track of IF she went or not since if I ask her if she went, she says, “I don’t know.” I have to tell her to take her soiled pad out of her underpants. Even if she sees it’s soiled, she doesn’t think to do anything about it. I have to give her a new one. I have to open it for her and watch that she puts it in her underpants correctly. I keep the Poise incontinence pads under the sink in the downstairs bathroom. She used to know to open the cabinet, reach in and take one. Now if I’m not with her, she may take the soiled pad out and not replace it at all. One day I left one on the sink and she went earlier than usual without me being home. She put the entire pad still wrapped in the plastic, inside her underpants. It’s folded into thirds with a plastic on top. I have to hand her toilet paper or she won’t use it. I have to count how many times I hand her toilet paper (5 in a row and I have to flush) so that the upstairs toilet doesn’t get clogged and I have to plunge it. I have to stand by and make sure she USES the toilet paper and doesn’t just set it on the sink or put it on top of the pad in her underpants. I have to make sure she wipes enough and in the right area and doesn’t give herself an infection. I have to watch and make sure she puts the used toilet paper IN the toilet and not in the sink, or on the floor. She often wants to hand it to me. NO THANKS.

You’d think this would be ENOUGH. But I can’t leave the room yet. I have to tell her to flush the toilet. Or sometimes I do it for her. It’s not always worth shouting about. She’s hard of hearing so I feel like when I do address her I’m always shouting. The less reaction she gives me, the louder I yell. It’s exhausting. Then I tell her to wash her hands. You’d think I could walk away then.But no…I have to make sure she uses soap. And then stick around to show her where to dry her hands. EVERY SINGLE TIME. She doesn’t go to the bathroom as much as most people so I should count myself “lucky”. She goes in the morning when she gets up, before lunch, before dinner and at bedtime. Occasionally, there’ll be another time. She doesn’t drink much water and then when the mood strikes her, she’ll drink 2 full bottles in a row. I still have trouble catching her always trying to stand up from the toilet without wiping or with feces hanging out of her. The struggle is real. 

Some of this sounds atrocious and I probably shouldn’t even put it in print. Maybe the worst thing that bothers me is her lack of interest in EVERYTHING. She doesn’t care what she eats, what she watches on tv, what she wears, you name it. I no longer see her smile ever or get any joy out of life. She sits in her recliner in the living room and I tell her to “put your legs up”. She lifts them together about 6 inches off the ground. It’s like a bad joke but no one’s laughing. I have to tell her to “use the handle”. EVERY SINGLE TIME. Some days she reaches for it and says, “I can’t”. She doesn’t even really try. It’s the worst to do for someone else who doesn’t try for themselves.

She was always somewhat demanding and difficult. I guess I didn’t really pay that much attention to it. She used to boss me around, “Cut my hair!” or “I want ice cream!” I used to be annoyed because I felt like it cut into my time. Now if only she could express what she wanted. As it turns out, my time is not my own anyway.

I’m on day 9 of one of the worst colds I’ve had in my life! I haven’t had a cold this bad in over 20 years. Back when I used to get them like this, I was working 3rd shift (nights) at the Post Office. I would stay in bed for at least 3 days to recover. Now I can’t even take a nap. I have someone to care for 24/7. Possibly the worst is that she has no comprehension that I’m sick. She doesn’t acknowledge it or have any compassion for me. Now hubby has caught the cold. He’s about 2 days behind me. I’ve been very diligent with washing hands and trying to keep from infecting my mom since a cold like this could kill her. I wouldn’t wish this on anyone! Not the cold and not Alzheimer’s!!!

Even Mom playing on the computer has become a challenge. We have it set up so she only has to push the space bar on the keyboard to spin the slot machine games. If she hits the wrong button, sometimes a grey box or a white box will come up. You have to tap or move the mouse to get it to disappear. She used to be able to move a mouse, now she doesn’t know what a mouse is!! I have to get up from wherever I am and fix it for her every time. Sometimes she can go all day without hitting the wrong thing. Other days it will come up every few minutes. She won’t call to me if I’m in the other room to tell me either, so I have to walk in and check on her every few minutes.

It’s similar to every day I have to hand her a kleenex and have her blow her nose. I can usually hear if she’s got snot in her nose so I try to get to her before she does things like sneeze everywhere or wipe snot somewhere. I have to stand there and make sure she blows her nose or she’ll just take the kleenex and fold it up and lay it somewhere. I can’t just tell her “the kleenex box is on your left” because it doesn’t sink in.

Mom falls asleep a lot and doesn’t know if it’s time for bed or time for dinner. When I take her to the bathroom before dinner, she often tries to go upstairs to bed. I have to tell her no and get her moving the other way. I’ve been cooking a lot (as usual) and made a couple of pork roasts. I got out 2 crockpots and prepared a whole bunch of veggies and cooked them up so I wouldn’t have to cook every single night. I still end up making more veggies later and improvising in different ways using the roasts. One night we had a frozen pizza and she hates them. I’m not too fond of them either but I was sick and didn’t want to fuss. I asked her if she wanted pizza or would she rather have a small scoop of cottage cheese for dinner. She said, “I don’t know.” So I gave her the cottage cheese and she ate it right up. I guess I could start making soups and things for her. It seems more that she’s forgotten how to swallow than anything else.

I started babysitting when I was 11 years old. I took a babysitting course from the Red Cross at the YMCA and got certified. I learned CPR and all that other good stuff. I was gungho to make money. I got jobs right away. Nobody wanted to pay anything. I guess 50 cents an hour was the average back in mid-1970’s. I had a young couple who lived next door who even had me babysit when they moved way across town. They paid like $1/hr. too which was great. Then I had a nightmare babysitting job for a woman across the street. She had rented from my dad the apt. next door and then later moved across the street. She was divorced and was a waitress at a chinese restaurant. She had one child who was a demon! This child would not listen at all. As soon as you got done telling her something, she would ignore you. I would say she was around 5 yrs. old. I stayed with her and played with her all day from mid afternoon until her mom was supposed to be home at 10 pm. We were in the house (while it was still light out) and I went to use the bathroom. Just a quick pee and I came out and the child was GONE. I wasn’t worried the kid was abducted or anything but how would I find the child? It was a girl and I was frantic. I went out looking for her with no luck. I called my dad for help. My mom was working. I wouldn’t call my dad unless I had no other choice. He helped me drive around the neighborhood and we found her. This child was impossible to control. I put her to bed and she kept getting up again and saying she wanted me to make her bacon. That sounded crazy to me. The kid kept carrying on. the mother called to say she’d be late and to go ahead and make the kid bacon. She said she’d be home by midnight. Then she never showed up until 3:30 am and I think it was a school night. Then she paid me what amounted to less than 25 cents an hour!! She called me later to babysit and I told her NO. She asked why. I told her she didn’t pay enough for what she put me through. No amount of money is worth that kind of aggravation.

It may seem odd that I’ve brought this up but I think of this scenario every single day. I have the same helpless feeling with my mom that I did with that girl I babysat. I get my mom to the upstairs bathroom and sit her down on the toilet and then I quick RUN a few steps to her bedroom and get a diaper and her glasses case and hearing aid container. I tell her to sit with her hands together (so she doesn’t pick her leg) and wait. Before I can get back to the bathroom, she’s trying to get up! I scream, “NO!” and get her sat down. Then I RUN to her bedroom, pull back the covers and put down the bed pads. By the time I’m back, she’s trying to get up again or HAS gotten up. Without wiping. She doesn’t know enough to pull up her pants so may just be standing there. What I’m living now, makes me relive that type of unpleasantness from that babysitting nightmare.

I’ve been trying to figure out WHY I’ve gotten into collecting religious artifacts at all, let alone during this time in my life. I’ve come to believe that it’s because I’m trying to ward off the demon Alzheimer’s. Not only am I afraid inhabited my mother, I’m afraid he has his sights set on me. In horror movies, often the demon leaves one host only to make himself at home in another nearby being. Scary stuff but nothing compares to reality and  how frightening it is to watch someone disappear before your eyes.

No amount of wishing, praying or hoping can get the demon to leave. Alzheimer’s has taken root and is here to stay. No exorcism can remove the demon from our lives. Today I was counting days of the week to see how long I’d had this cold. I go, “Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday, Eighty, Ninety, One Hundred…” I’m not even kidding. I caught myself and did it wrong a total of 3 times. I can’t even make this stuff up. I’m going to say this is the cold messing with my head (even though I’ve taken no meds for it) and not freak out that I’m losing my mind as well.

I have finally come to terms with how people can put a loved one in a nursing home. I honestly couldn’t see it before. I’m still not going to do it but at least I understand. People must feel that one life is enough to sacrifice and lose. By being the caretaker of an individual with Alzheimer’s, you are giving up your own life. So basically 2 whole lives are wasted, not just one. I’m assuming this is my purpose in life since I haven’t accomplished much else. I’ll just continue to take it one day at a time since looking beyond that is overwhelming.

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