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Ok, this is more a thread I would like to start to let off steam, not about how soul-crushing caregiving for dementia is, but about the sheer absurdity that becomes comical/tragicomical:


Every. Single. Time. I finish all the tasks (which are there more this week because there is COVID in the household and I am stuck inside without aides), he's fed, he's had attention, a chance to move around, personal care, the laundry, the supply orders are made, sanitizing, dishes, etc (it never ends)----I finally sit down to answer some of my own emails or send a message to my boyfriend or even just to MAKE A LIST OF THE THINGS I HAVE TO DO----he needs/wants something OR just starts talking incessantly. I'm at the point where I won't entertain every single demand (he does not ask for things, he's telling you his order like a jerk old guy to a poor diner waitress, and I was a diner waitress once haha), I just give a short reason why I won't do it if its an absurd request ("Can you turn the kitchen light off I can't eat"), and he tries to flip the narrative that I'm starting trouble, apparently by sitting down. Then he backpedals and apologizes. All of this feels like the most annoying possible way to retain control, and it's rude, and he's kind of manipulative. It's extremely irritating, but not escalating...just feels like a Groundhog's Day song and dance and sometimes I just have to go in the kitchen and laugh instead of groan because this behavior is EVERY. SINGLE. TIME. I. SIT.

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Nothing but commiseration. My mother-in-law does this, and she's not the one with dementia. She also treats waitstaff badly—she "runs" them, one tiny request at a time. Like you, I spent some time in the industry, and it drives me up the wall. I routinely slip restaurant servers an extra tip when we go out with her.

In her house, she does exactly what you describe. And she's the youngest and least needy of our mothers, and not the reason I created an account on this site. It'll be rough when it's her turn.
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LOL GOD. He actually didn't ever run people in restaurants and bars---he was pretty jovial and tipped really well. He doesn't even run the aides. I swear he only does it to me, and now my mom that she has started to participate in his care.
I really try to retain lightness in my voice, because I have resting-b*tch-face by nature, and I know my irritation is incredibly visible, so I have to even it out monotone. It's like Ben Stein level sometimes. It just gets to me that it's when I've already sat down. I've even pointed out that he does this, and he just turns it on me somehow lmao. I feel bad for him of course, but he is sooooooo annoying when he's in a semi-lucid state; he's sweet when he has full lucid moments, and he's an absolute demon when sundowning without medication. It's really cartoonish.
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SnoopyLove Dec 2021
Ha! RBF is an issue for so many of us.
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Attention seeking behaviour. Trying to ensure HE is central to your world.

Probably not a conscious thing - just deep in his brain somewhere he knows he needs another person to survive & so he must ensure he keeps a tight reign on his carer.

I had just sat down once, as you say, after running around doing everything for everybody. Just lifted my fork to my mouth (everyone else started eating long before) & I felt the stare & then the "I need..."

In that case it was behavioural due to mental illness & I no longer have a care role for the person.
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overwhelmed21 Dec 2021
Ha! I needed to read this today! Reminds me of Ralphie's mother in A Christmas Story, "she hadn’t had a hot meal for herself in 15 years.” No advice for any of you, as my mom is slowly pulling me down this road, but do think a strong sense of humor helps🤣
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You're not a trained professional to deal with demented patients. You have to get him in an appropriate place where he can be cared by trained people..
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PerfumeGarden Dec 2021
Yeah, no kidding, haha, no one is except a professional, but we have to spend down a bit more money before going the placement route while I find somewhere I can get him in private pay and transition to Medicaid. Until then, I just have to pull what humor I can out of this, for now, I was drowning before a respite break---and this thread was labeled *light vent*!
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If you're busy on the computer or whatever - maybe just say "I just sat down and am not getting back up right now" or "Now's not a good time, I'll come see you when I'm done" and shoo him back to elsewhere. If he's chatting away and you're busy, I would just kind of ignore him.
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You're allowed a light vent or a heavy vent here, anytime you like. Many of us are in the same predicament you are, and there isn't always a Pat Answer that covers these dilemmas, is there? Nope, there's not.

Once you place your loved one in Memory Care AL, there is STILL the phone calls and visits where each one is a repeat of Groundhog Day! It doesn't end just b/c you've placed him; the same stories and behaviors are repeated THEN as they are NOW. My mother is 95 next month and in Memory Care for 2.5 years now with advanced dementia. Every day she calls to say she isn't 'going home tonight' for one reason or another, but to tell the 'family (who are all deceased) where I'm at' and to 'take care of the baby' (still haven't determined WHO that is) and on and on. If 'mama or papa' (dead since 1940 and 1984 respectively) ask for her, 'tell them where I am'. We have a repeat discussion of why nobody calls her, and why the family has 'abandoned' her so I come up with a variety of different stories about what they're doing and why they're 'too busy' to call her (we don't discuss that they're all in heaven). So I try to laugh sometimes because I know for a fact I've already cried too much already.

Visits aren't any easier because the incessant chatter about nonsense is difficult to follow and/or to have ready responses for. She tries to get up from her wheelchair repeatedly which has me flying up to stop her; she's already fallen 49x so I'm trying to prevent another. Sometimes she's highly argumentative and even manipulative, so it's all very exhausting and endless, really.

Laugh and groan all you need to, and vent away! Dementia is a horrible thing to be afflicted with and it affects EVERYONE in a negative fashion. None of us get off Scott free when dementia is involved; the whole family suffers the ravages of it.

Sending you a hug and a prayer that you're able to laugh off more of the behaviors than you cry about.
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My hubby waits until I get him settled in bed, and I sit down to relax. Then he decides he needs his Depend changed, even though 5 minutes earlier he said he was fine!!!!
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Try earplugs, good industrial ones. When he starts up, just point to your ears. Smile and wave. Or sing - Rave on, that crazy feeling!
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Laugh and vent... your survival skills.
There is no fix, so just know the struggle is real and you are not alone.
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Good of you to see even traces of humor in your situation. Yes, your GF is probably trying to keep your attention. Maybe when you get him settled, you can tell him you'll be "back at 10 o'clock" or whatever time is perhaps half an hour away. If he can't last 1/2 hpur, you could start with a shorter time and work up. Maybe he could adjust to some time without you if he knew you were coming back soon whether he called you or not.
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Yeah, 99 year old mom does this to my wife, especially. She's the fifth elder we've cared for over the years, on both sides of the family. I think mom just gets nervous if she isn't occupied through us at all times. We hire a person to just spend time with her, talking all the time, two days a week. But it can get pretty annoying the rest of the time. She's been in and out of hospice for the past three years, and will eventually die here, so we try to keep our humor alive. Venting here helps me sometimes. Hope it helps you.
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bundleofjoy Dec 2021
“99 year old mom does this to my wife, especially”

hug! your poor wife. i hope she doesn’t treat your wife like a slave/servant.

caring women are often exploited/treated like slaves/servants.
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It happens on a daily basis but I'm not sure that my mom is completely aware that she is doing it because of her disease. Its frustrating and sad at the same time.
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My husband to a T. I will sit down and within minutes hear, "I'll let you [get me a soda] [cover me with a blanket] [ bring me my phone] [fix me a bowl of ice cream] and so on. Never a "please," just a "I'll let you" as if I have been waiting and longing to do this. He's always been controlling, everything in his time his way, and it is only getting worse. Not much can be done about a broken brain.
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bundleofjoy Dec 2021
this expression would make me explode:

“I'll let you”

by the way, i think some people do it on purpose to provoke you. they want to upset you. they want you to reach the explosion point. no one in the world would like to hear “i’ll let you”.

i also really dislike:

“want to” give me a hand?

—rather than these sneaky, impolite, expressions, i prefer “please can you give me a hand?”, etc.
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It seems that getting older is like going back to childhood. Newborns are bald, have no teeth, can't walk, are incontinent, can't communicate and require total care. Old people do the same. The reverse trip continues until they go back to where they came from, from nothing.
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Scampie1 Dec 2021
🤣🤣
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PerfumeGarden: Establish boundaries.
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PerfumeGarden Dec 2021
Oh, I've tried. This is a retired Teamster who counterfeited money in the 1950s in Philadelphia and New York, as a major Jimmy Hoffa enthusiast type. He also helped another relative funnel stolen money to the IRA in Ireland (honestly kind of cool and weirdly radical). Boundaries are not even a concept, let alone a concept to be respected!
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YES, ya gotta laugh sometimes instead of crying. I complain a lot to my husband and brothers, and venting helps. Laughing and venting....

My dogs torture me in a similar way. "I need to go out". I let the dogs out. I sit down. 3...2...1.... Dogs: "I NEED TO COME IN RIGHT NOW."
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My mom used to start talking to me as soon as I went in the bathroom
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My Mom doesn’t have dementia and does the same thing 😂
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I can really vent on this one. I had a client that I worked for eight hours a day four days a week. I started working back in the home health field and it has been heck so far. This client will use the bedside commode even though she could walk to her own bathroom. The house was covered in old mail and old papers strewn all over the place. I would go hours without eating. Everything was about her. I wanted to run out to get a quick bite to eat, but she would make everything about her. Then she would take forever to let me know what she wanted to eat. It got so bad that I would just say forget it. I never enjoyed my food anyway because when I thought she was taking a nap, five minutes have barely gone by, and she would be up and calling me. One day I had vacuumed her bedroom, disinfected the bedside commode, cleaned the bathroom, washed the dishes, took out the trash, helped her back and forth to the beside commode, placed the trash bags where she wanted them and etc. Next day she had a doctor's appointment and had changed her clothes seven times, tried to cancel the appointment, complained about going to the doctor, had to check three purses, pack her bags on the walker, find her check book and we finally left to go the doctor. She gets the doctor and sends her cousin down to get sandwiches to take home, complains about wanting to leave when we get down to the lab.
Next day she is in a nasty mood from the time I get there. I told her that I need to run to the store to get dishwashing liquid. She has a total meltdown. I ended up not going to the store. Then I had to end up listening to complaints all day. I was tired because after shuffling back between doctor's appointments and finishing up laundry left by the other aide that Monday, I was just tired and hungry. She would run off her other aides from the weekend. This happened a lot, and my patience was wearing thin. She had this thing about going to the bathroom and trying to get all these chores done thirty minutes before I was to leave. I hadn't eaten all day long except for a cold piece of chicken and a sparkling juice, so I go downstairs to check the clothes in the dryer. She is still on the walker complaining and then started yelling where are you? Then she started turning the lights off in the basement. I go upstairs and she blocks me on the step. I asked her to please move and she is still complaining and asking the same question over and over again saying it in a mean and controlling manner. Finally, I'm tired of the entire scene and realizing that I'm being taken advantaged of because of all the work that is piled up from the weekend. They didn't pay enough for this case. So, she refuses to move and threatens me to say that she would call and report elder abuse if I touched her. Then she decides to lecture me for ten minutes about I needed to be there for the patient and anticipate that I should know exactly what she needs at all times, and that I'm stealing her things, let me see what is in your bag, and on and on. I told her no. I had reached my breaking point from this demanding old person and told her to have a good life. I haven't been back.
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polarbear Dec 2021
Scampie1 - What an old miserable hag your client was. I'm glad you ditched her.
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Yea, who needs to go to a gym?

My mother barks orders the entire time I am at her place several times a week. Often I dread going. She talks over me while I am on the phone for her insurance issues.

Then while finally driving home she calls and leave a non urgent message. Today three more missed calls. Finally I check in while caring for husband's aunt to see what the problem was. She wants to argue about whether some shoes got thrown out today with the garbage. I respond to her worry, telling her no and she just argues more.
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He probably is feeling anxious. Talk with his doctor about managing anxiety medically.
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When my son was a toddler, I taught him the concept of waiting for a timer to sound to signal the end of nap/time out/mom's quiet time, or the 'staying up 5 more minutes" Dunno if that might work with your LO. Is he more annoying when you are in his line of sight, or less if you are out of sight?
A little something like a low dose of antidepressant might take edge off of his restlessness...and he might be having pain that he won't; admit to! Ask MD about acetaminophen 2 or 3 times daily. I bet LO does have some old injuries/joint damage that could be causing irritability. Men usually deny pain or discomfort.

Given what you say about his experiences in the world of work, I would be very concerned if he starts expressing paranoid, threatening, or violent thoughts or ideas. I had an adult protective client with a similar background, became threatening to wife and she finally got a restraining order. He refused to give up his weapons, son insisted all of them were taken away years ago. The police officers got permission from the son (owner of home) to enter and search. About half a dozen weapons were located, including a shotgun and handgun in a hidden gun safe. The son had no idea that safe even existed. You might already be aware of this possibility.
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Omg my dad does this! Usually I am putting clothes away or pulling curtains right near him & then I sit down after running around for him all morning & he will ask me for something that's near him!! Soooo annoying!! I do get irritated but he still does it. He sleeps & lives downstairs. He can't walk anymore so I gave to do everything for him along with carers who come 4 times a day. usually I go upstairs in the afternoon to have a break. Before I go up I ask him if hes got everything. I give him a drink & put a film on for him & tell him I'm going upstairs for a rest now. He has a doorbell button he can press if he needs me as in a wet accident. Luckily he has a sleep & watches the film & I get at least an hour & half to do what I want to do.
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So good to know I am not alone! Happy New year everyone! 😀
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