Tips for living with a complainer

[Spryte]

Help me out?  I live with a complainer.  (Sigh)  I need tips to maintain sanity and happiness while caring for the complainer in a kind way.

For the most part, we’re all very happy and upbeat here, DH, teen, kid and I.

Our complainer is an addition to the family household.  She’s elderly, and she’s not going to change her ways - this is not a new thing, and has been part of her persona since her childhood.   She has dementia and bipolar, BPD, anxiety and possibly some other mental health diagnoses I’m forgetting that are all medicated, but still at play.  So, really, she’s not changing, and living with a litany of  complaints is small potatoes compared to other issues we’ve lived through with her.  I have accepted that I (we) cannot make her happy, so I (we) just care for her as best we can, with smiles and love. She has no other living arrangement option, and doesn’t quite qualify for nursing care even if she qualified for Medicaid, so, really, she’s not going anywhere.  What she needs is assisted living, but that’s out of reach financially for her.

But I need some tips on deflecting, changing the subject, not engaging.  

She doesn’t do all the activities of daily living, so most of that falls on me.  But food is never prepared right, too hot, too cold, too bland, too spicy... what was perfect one day is terrible the next.   Things in house are not right, the stairs are an agony of complaints each day (PT has her going up and down at least three times a day, which is good because otherwise she can’t stay here, there’s no first floor option.)  If, for example, there’s not the right bread or desired food item immediately visible, she walks away with a dejected, “I just won’t have breakfast,” rather than letting someone know that she needs help.  Or she will just mumble complaints about [whatever] making sure to be in earshot of someone else. There’s a general stream of “woe is me” that no amount of anything we do can change.  So for our own sanity, we have mostly accepted that we can’t change it, and just sort of let it wash over her while we try to maintain our own equilibrium.

I try to have a pocketful of responses.  Stairs get something along the lines of “they are tough but it’s better than the alternative!” And a smile.  Food - I offer to fix something else to eat.  Often, I don’t eat meals with the family because I spend the entire time running back and forth trying to make things right for her.  We have solved that, for now, by eating separately, but that’s not a permanent solution.

I’m stuck on how to handle the mumbled complaints.  Ignoring it makes it uncomfortable for all of us - it sort of sucks the oxygen out of the room.  Jumping up to help is my go to, but it’s exhausting, and really doesn’t set a good example for the kids.  And sometimes I’m busy and just can’t help.

There’s got to be some better solutions.

If you live with a complainer, how do you manage it?  How do you and your kids or spouse stay in your happy space?

 

I might delete some details later, so please don’t quote.  Thanks!
 

 

 

[OH_Homeschooler]

I just came across this article recently. I'm not sure if it will help much given some of the health issues you are dealing with, but maybe there is something useful? 

https://www.rd.com/article/quiet-the-family-complainer/

Sorry you are dealing with this. 

 

[Spryte]

42 minutes ago, OH_Homeschooler said:

I just came across this article recently. I'm not sure if it will help much given some of the health issues you are dealing with, but maybe there is something useful? 

https://www.rd.com/article/quiet-the-family-complainer/

Sorry you are dealing with this. 

 

That is very helpful.  Thank you!

[wendyroo]

For reference, my complainer is a severely mentally ill, autistic 9 year old.

My go to line is, "Let me know if there is something specific I can help with."

"My knee hurts."
"Let me know if there is something specific I can help with."

"This math is too hard."
"Let me know if there is something specific I can help with."

"My peanuts don't taste right."
"Let me know if there is something specific I can help with."

"I won't wipe the table. You'll just say it isn't good enough."
"Let me know if there is something specific I can help with."

The vast majority of the time he just perseverates on his complaint. Sometimes, though, he does ask for help with either something non-specific ("Make it better!") or unreasonable ("Do it for me!"), and at that point I repeat "Let me know if there is something specific I can help with" one time and then stop responding entirely.

Obviously, since my complainer is still young, and we are trying to teaching skills, we respond very positively if he does successfully ask for specific help. So if he does manage to go from "My knee hurts" to "Could you bring me an ice pack?", then I keep all my eye rolling inside (dropping a stuffed animal onto your knee does not cause an ice pack worthy injury!! 🙄) and just cheerfully help as he has asked if it is at all reasonable.

[Amy in NH]

It is attention-seeking behavior.  Didn't "they" always tell us not to reward bad attention-seeking by engaging or giving it any attention. 

You could use wendyroo's suggestion to ask once if there's anything specific you could do, but she is certainly old enough 😉 to ask for specific help, and also to take care of it herself if there were something specific to be done to satisfy her.

So, I'd play music I like - into headphones around my neck if necessary - all-day every-day.  Then when a complaint comes out, I'd just smile and sing along with my song.  It would alleviate the awkward silence you mention if you don't say something, while also distracting your attention to something that gives you peace or joy.

Edited January 26, 2021 by Amy in NH
added a hyphen

[Amy in NH]

After re-reading your OP, I wanted to add that I think it is unreasonable for you to jump at her every whim.  She's not a toddler, even if she is acting like one.  You should be able to eat your meal in peace, and she can fix her own plate to her liking or wait until you're finished.

I know you can't change her, but I think you should also approach this the same way you would with a child.  You know that she will never be satisfied, because it's not about the food/stairs/xyz - it's about the attention.  By jumping to try to make things right every time she says boo, you are reinforcing the conditioning that she will get attention for her negative behavior. 

If you stop engaging with her every complaint, she will eventually learn that her complaints don't get her the reward of attention that she is seeking.  She may continue to complain just because she likes to, or she may learn to communicate differently to get attention.  But I doubt she will throw herself on the floor for a screaming tantrum...  and if she did, you could all just leave the room until she is finished, and then come back to finish your meal.

[kbutton]

I like @wendyroo's phrasing.

Do you think she would do any better if she felt a greater sense of control over some details (not over people!)? I wonder if having a sort of standard menu for breakfast that she's helped choose that you know you can keep stocked reliably would help with something like the wrong kind of bread? If there is something real underlying the complaint that could be fixed (again, a need to have some control or a need to feel satisfied with choices, etc.), it might be worth trying. Then, if it's not helpful, you can feel like you've tried something that aims at the root. (That would make me feel better.)

I am not sure what she needs at dinner that keeps you running, but I think I would eat separately for some meals if that's the case too. Or else maybe alternate who is the runner. That job can be spread around. 

**ETA: I think I'm being a little vague. The bread is an example, and it might be a real problem (she can't eat the bread she likes for dietary reasons, your bread is different than her preference), but it could be true that having a choice over something like bread would help with some control as long as the choice doesn't mean someone reading her mind, responding to every whim, or making a special trip. It could be that she doesn't really know what she wants, but it might be something she doesn't see until something like a menu has been tried. None of what I'm saying should be seen as a blueprint, just a "for instance." An idea to springboard from.

Edited January 26, 2021 by kbutton

[Carol in Cal.]

I’m not sure that this would be appropriate to an elder family member, but if I were feeling instructional, like with a kid, I’d say, ‘And what is good right now?’  Granted, that can evoke a yelled ‘NOTHING!’ But it sometimes derails that complaint train.  I think sometimes you kind of have to just tune it out, which is very hard.  

My husband is a sweetheart but he thinks that most of the stuff that is worthy of note is mostly the negative.  One time I told him very seriously that I needed 10 positives for every 1 negative, and while I did not get that, I think the ratio went to about 2:1, which I considered a win for everyone.  He is fond of saying, “That goes without saying,” about positive comments, but I answered, “No, actually it doesn’t.  It needs to be said and communicated.”  (This was mostly about giving credit for things.).   I have found that in asking for him to say the good stuff, it has reminded me to do so as well, and that’s one of the values of calling this out—in asking ‘Hey, tell me something good!’, you’re actually reminding yourself to model that as well.  I’m not so perfect at this myself, but in asking for it I also am working toward it, which is good all around.

Edited January 26, 2021 by Carol in Cal.

[Spryte]

@wendyroo Thank you for sharing specific examples.  So very helpful!  I will try your line, and see how it goes.  It at least gives me something concrete to try.  I think you are an amazing mom, by the way, and you are doing an excellent job!  It’s so wonderful that your kiddo has you to help now.

 

 

[Amy in NH]

1 minute ago, kbutton said:

I like @wendyroo's phrasing.

Do you think she would do any better if she felt a greater sense of control over some details (not over people!)? I wonder if having a sort of standard menu for breakfast that she's helped choose that you know you can keep stocked reliably would help with something like the wrong kind of bread? If there is something real underlying the complaint that could be fixed (again, a need to have some control or a need to feel satisfied with choices, etc.), it might be worth trying. Then, if it's not helpful, you can feel like you've tried something that aims at the root. (That would make me feel better.)

Keeping in mind that our favorite food items have frequently been out of stock since the pandemic started.

[Ottakee]

Would this person qualify for adult foster care/group home under community mental health?   I know several similar people that are in adult foster homes.

[Amy in NH]

2 minutes ago, Ottakee said:

Would this person qualify for adult foster care/group home under community mental health?   I know several similar people that are in adult foster homes.

Or maybe even respite care, to give you a break, @Spryte

[Spryte]

13 minutes ago, Amy in NH said:

It is attention seeking behavior.  Didn't "they" always tell us not to reward bad attention seeking by engaging or giving it any attention. 

You could use wendyroo's suggestion to ask once if there's anything specific you could do, but she is certainly old enough 😉 to ask for specific help, and also to take care of it herself if there were something specific to be done to satisfy her.

So, I'd play music I like - into headphones around my neck if necessary - all-day every-day.  Then when a complaint comes out, I'd just smile and sing along with my song.  It would alleviate the awkward silence you mention if you don't say something, while also distracting your attention to something that gives you peace or joy.

Oh, yes, you are sooo right.  It’s attention seeking.  I could write a novel about it.  Actually, have semi-joked about writing a memoir called Raised By Wolves, Life With An Undiagnosed Bipolar Mother, but I digress... 

One thing I’ve tried (to no avail) is when I hear complaining being mumbled, is to say, “oh do you need help?  We’re all happy to help if we hear you ask for help, just let me know.”  We all tried that for about a week, but it really just made her mad.  What she wants is to say, “it’s too cold in here,” and have someone jump up and bring a blanket and adjust the thermostat.  🤣

The teen has discovered your headphone idea.  It works beautifully for him.  Thank you for suggesting I do it, too!  What a liberating idea!

[Junie]

I am a complainer -- I'm working on it.

What @Sprytesaid just above -- an example -- of someone she is saying she is too cold and wanting someone to bring a blanket -- yes, that is very much me.  

For me, I guess, the reason is both attention and pride.  The attention-seeking because I want to know that my family loves me even though I am sick and the pride in that I hate that I need help.

Asking for help is hard.  I have chronic pain issues and I hate asking for help.  Sometimes I am able to laugh it off, but often it is depressing when I have to ask my ten year old to do something that I can no longer do.  

I get it that listening to my complaints is hard, too.  That's why I'm working on it.

Yes, part of why she's complaining is probably for attention.  But I'm guessing that part of it is pride -- that she doesn't want to ask for help. 

[Spryte]

11 minutes ago, kbutton said:

I like @wendyroo's phrasing.

Do you think she would do any better if she felt a greater sense of control over some details (not over people!)? I wonder if having a sort of standard menu for breakfast that she's helped choose that you know you can keep stocked reliably would help with something like the wrong kind of bread? If there is something real underlying the complaint that could be fixed (again, a need to have some control or a need to feel satisfied with choices, etc.), it might be worth trying. Then, if it's not helpful, you can feel like you've tried something that aims at the root. (That would make me feel better.)

I am not sure what she needs at dinner that keeps you running, but I think I would eat separately for some meals if that's the case too. Or else maybe alternate who is the runner. That job can be spread around. 

**ETA: I think I'm being a little vague. The bread is an example, and it might be a real problem (she can't eat the bread she likes for dietary reasons, your bread is different than her preference), but it could be true that having a choice over something like bread would help with some control as long as the choice doesn't mean someone reading her mind, responding to every whim, or making a special trip. It could be that she doesn't really know what she wants, but it might be something she doesn't see until something like a menu has been tried. None of what I'm saying should be seen as a blueprint, just a "for instance." An idea to springboard from.

I don’t think you were vague at all, thank you! Giving her more to control is a good plan. I’m going to think about control options for her.  That would help.

Breakfast is a good example, it’s the only meal she prepares for herself, and I think her life (and mine) would be easier if the options were always exactly the same.  She likes either Cheerios and rice milk, or toast.  Which is easy enough.  She doesn’t pivot well, though.  So if the teen finished the Cheerios, she has a hard time switching to toast. Or (and this part could be the dementia) she has a hard time finding the bread some days, even when it’s in the same place each day.  

Or, like today ... she will get the bread out and spend a a good 4-5 minutes complaining about eating the heels, despite being offered a fresh loaf, and told again and again that she doesn’t have to eat the heel if she doesn’t want it.  (I shouldn’t have engaged, honestly, but I got pulled in, aaack.)

I have more thoughts, but running to a zoom meeting for a few minutes, so just wanting to say thank you all for helping me think this through!  Back soon!

[Spryte]

17 minutes ago, Ottakee said:

Would this person qualify for adult foster care/group home under community mental health?   I know several similar people that are in adult foster homes.

Unfortunately, not quite.  Her income, frustratingly, is $80 too high to qualify for community based care.  I am working with our local association on aging to see if we can find more help though.  

[Katy]

You might find reading about caring for someone with dementia to be helpful. I know they don’t have dementia, just a trying personality, but the early stages can be similar in terms of fear coming across as constant complaints. Reading about it can help not only make it less personal, it can give you little ideas. Like maybe reading that study where nurses started handing out m&m’s instead of extra medication to complainers. The patients didn’t remember why they were in a good mood, but they were.
 

I took care of a patient once who was always cold and attention seeking. At her first complaint I’d get her one of those microwave warming bags to tuck around her neck, a lap blanket, some candy, and her favorite photo album.  Then I’d smile and check in with her periodically. She was a model patient for me. 
 

I agree you don’t need to wait on her. Food not hot enough?  (Smile) The microwave is in the kitchen. Food not cold enough? (Smile) It will cool on its own in a few minutes. Need salt?  (Smile) It’s in the spice cabinet next to the stove if the shaker right next to you is empty. Too cold? (Smile) The thermostat is in the hallway. As much as possible radiate calm, in control, happiness. 
 

I realize it’s much more difficult to de-personalize anything with a parent, especially a mentally ill parent.  Anything that helps make it not personal and helps you remember it isn’t something she can control will help you cope. And whenever she says anything ridiculous try the three slow blinks, as if it’s taking you a moment to comprehend. Then apologize for their feelings.  You would never want her to feel cold.  Then (gently) smack her with reality. The reality is you’re busy with this right now. If she’s cold she can go upstairs and get a sweater or go to the thermostat and turn the heat up. She’s been cold a lot lately.  Would she like for you to order her some long underwear?

[Katy]

Oh I see she does have dementia. Start by reading The 36 Hour Day.

You don’t want someone with dementia in assisted living. You want a nursing home with a memory unit. If the nursing home has an attached assisted living apartments that might be an option. But it needs to be a licensed nursing home, that way it meets legal safety standards. 

[fairfarmhand]

22 minutes ago, Spryte said:

Oh, yes, you are sooo right.  It’s attention seeking.  I could write a novel about it.  Actually, have semi-joked about writing a memoir called Raised By Wolves, Life With An Undiagnosed Bipolar Mother, but I digress... 

One thing I’ve tried (to no avail) is when I hear complaining being mumbled, is to say, “oh do you need help?  We’re all happy to help if we hear you ask for help, just let me know.”  We all tried that for about a week, but it really just made her mad.  What she wants is to say, “it’s too cold in here,” and have someone jump up and bring a blanket and adjust the thermostat.  🤣

The teen has discovered your headphone idea.  It works beautifully for him.  Thank you for suggesting I do it, too!  What a liberating idea!

You can get those wireless headphones (like Airpods, but generically available now) and if you're hair is over your ears, nobody will know you are wearing them.

9 minutes ago, Spryte said:

I don’t think you were vague at all, thank you! Giving her more to control is a good plan. I’m going to think about control options for her.  That would help.

Breakfast is a good example, it’s the only meal she prepares for herself, and I think her life (and mine) would be easier if the options were always exactly the same.  She likes either Cheerios and rice milk, or toast.  Which is easy enough.  She doesn’t pivot well, though.  So if the teen finished the Cheerios, she has a hard time switching to toast. Or (and this part could be the dementia) she has a hard time finding the bread some days, even when it’s in the same place each day.  

Or, like today ... she will get the bread out and spend a a good 4-5 minutes complaining about eating the heels, despite being offered a fresh loaf, and told again and again that she doesn’t have to eat the heel if she doesn’t want it.  (I shouldn’t have engaged, honestly, but I got pulled in, aaack.)

I have more thoughts, but running to a zoom meeting for a few minutes, so just wanting to say thank you all for helping me think this through!  Back soon!

I think it's ok to tell your kids to not eat the last of Grandma's favorite, and to always have that on hand My dh likes one or two kinds of cereal and the kids won't finish his favorite kind but will choose something else. Also, like a toddler, it might make your day go more smoothly to always hand her a fresh loaf or set the heels aside for someone else to eat if your mom wants to fuss about it. It's not abnormal for older people to want to eat the same thing all the time, which can make stuff easy for you if you can go with it. 

[kbutton]

21 minutes ago, Spryte said:

I don’t think you were vague at all, thank you! Giving her more to control is a good plan. I’m going to think about control options for her.  That would help.

Breakfast is a good example, it’s the only meal she prepares for herself, and I think her life (and mine) would be easier if the options were always exactly the same.  She likes either Cheerios and rice milk, or toast.  Which is easy enough.  She doesn’t pivot well, though.  So if the teen finished the Cheerios, she has a hard time switching to toast. Or (and this part could be the dementia) she has a hard time finding the bread some days, even when it’s in the same place each day.  

Or, like today ... she will get the bread out and spend a a good 4-5 minutes complaining about eating the heels, despite being offered a fresh loaf, and told again and again that she doesn’t have to eat the heel if she doesn’t want it.  (I shouldn’t have engaged, honestly, but I got pulled in, aaack.)

I have more thoughts, but running to a zoom meeting for a few minutes, so just wanting to say thank you all for helping me think this through!  Back soon!

I have a lot of food intolerances, and it's taken training to deal with shared food options with my family. There is nothing crummier than looking forward to something that you can eat and finding only things you can't eat left! 

I would have an area for her food that is off-limits. Even if she struggles to find things, and you have to direct her, the off-limits area would be a signal to the kids to stay out, and it would preserve her options for her. This is a little harder with fridge items, but perhaps having a dorm fridge could help segregate a few things you need to be able to count on. I would buy smallish boxes of cheerios that are just for her so they don't get too stale if it takes her a while to eat them. Having a box that is smaller ought to be a good cue for the kids to stay out. I would probably fine them if they do eat her stuff, lol! (I have only teens right now, and they have always paid attention if money is involved.) Can you get her rice milk in single serving packs? If so, I would keep a few on hand in the off-limits area, and I would watch the dates on the boxes so they don't expire. If the rest of the family drinks rice milk, fine, but make sure no one drinks the single serves, so that if the main container is emptied, a single serve is right there for her. One single serve can be kept chilled just in case. I would also consider putting out fresh bread for her most days, and just not let her see a loaf getting low in her food prep area even if it means freezing a partial loaf now and then so that it doesn't sit too long. This would be more along the lines of sleight of hand and managing what is around her while finding a place for partial loaves to go that will be used by everyone else. 

[kbutton]

18 minutes ago, Seasider too said:

Her complaints really aren’t about your care skills, do your best to not take it personally. 

Even if you find ways to minimize the complaints, there will be some that stick. This is very true!

I suspect that things will change from time to time as well, and then you'll feel back to square one. One of my kids changed so rapidly when he was a baby that I used to say I had a brand new kid every three weeks--one week to do all the wrong things, one week to figure out what worked, one week to enjoy it, and then it started again. 

I hope you can find a few things that make it easier. ((((Hugs))))

[Spryte]

36 minutes ago, Junie said:

I am a complainer -- I'm working on it.

What @Sprytesaid just above -- an example -- of someone she is saying she is too cold and wanting someone to bring a blanket -- yes, that is very much me.  

For me, I guess, the reason is both attention and pride.  The attention-seeking because I want to know that my family loves me even though I am sick and the pride in that I hate that I need help.

Asking for help is hard.  I have chronic pain issues and I hate asking for help.  Sometimes I am able to laugh it off, but often it is depressing when I have to ask my ten year old to do something that I can no longer do.  

I get it that listening to my complaints is hard, too.  That's why I'm working on it.

Yes, part of why she's complaining is probably for attention.  But I'm guessing that part of it is pride -- that she doesn't want to ask for help. 

Oh, Junie, I don’t think you are even close to being in the same league. Huge hugs to you, chronic illness is hard, hard, hard.  I don’t want you to feel that you’re in the same ballpark.  I’m 100% sure you are not.  
 

I do think some of it could be pride.  And some is just ... it’s just her.  Her dad, a wonderful, kind-hearted man who was consistently positive and thoughtful, once said that my mom couldn’t help it, that she was born with lemons in her mouth.  We all love her, and work around it, she has amazing good points, but this one personality trait can grow tiring when living with it day in and day out.  

[Storygirl]

I agree with Seasider that you won't be able to change the behavior of someone with dementia. She likely cannot learn a new life or conversational skill at this point. My mom with Alzheimer's lived with us for a time, with me as her sole caretaker, and I know how wearing it can be. I think the best that you can do for her is to recognize some of the triggers and do things to minimize them (for example, always having her favorite foods on hand, as mentioned by others). And the best thing you can do for yourself is to get a break from the stress sometimes. I know how hard this is, when you are always together in the same house. But perhaps the members of your household can take turns helping grandma during meals, so that it is not always you. Perhaps you can go read (or whatever helps you with stress) in your bedroom for two hours each day, while someone else hangs out with her or answers her needs.

It's not ideal to ask children and teens to help with their grandmother, but if it's not all of the time, and if they are on board with helping, it's okay. When I was a teen, my grandmother with Alzheimer's lived with us, and my sister and I had a lot of responsibility for her care when my mom was at work. I think my mom relied on us too much, but having the kids help a little would be okay -- perhaps once a week, each kid takes a turn helping with meals, so that you can have a break, and once a week, they answer her needs for two hours, so that you can have a break. You could consider offering to pay them for their time.

Depending on your family dynamics and the ages of your kids, enlisting their help may or may not work, but I'm tossing it out there. If they know that sometimes they are "on duty" and that other times, they can tune her out and be "off duty," I think it could be okay. And then you would also benefit from having some "off duty" time.

[kbutton]

46 minutes ago, Junie said:

Asking for help is hard.  I have chronic pain issues and I hate asking for help.  Sometimes I am able to laugh it off, but often it is depressing when I have to ask my ten year old to do something that I can no longer do.  

I think sometimes complaining in these circumstances is a backhanded way of acknowledging that you really need the help but wish you didn't. 

I am sure you do your best! 

[Spryte]

40 minutes ago, Katy said:

You might find reading about caring for someone with dementia to be helpful. I know they don’t have dementia, just a trying personality, but the early stages can be similar in terms of fear coming across as constant complaints. Reading about it can help not only make it less personal, it can give you little ideas. Like maybe reading that study where nurses started handing out m&m’s instead of extra medication to complainers. The patients didn’t remember why they were in a good mood, but they were.
 

I took care of a patient once who was always cold and attention seeking. At her first complaint I’d get her one of those microwave warming bags to tuck around her neck, a lap blanket, some candy, and her favorite photo album.  Then I’d smile and check in with her periodically. She was a model patient for me. 
 

I agree you don’t need to wait on her. Food not hot enough?  (Smile) The microwave is in the kitchen. Food not cold enough? (Smile) It will cool on its own in a few minutes. Need salt?  (Smile) It’s in the spice cabinet next to the stove if the shaker right next to you is empty. Too cold? (Smile) The thermostat is in the hallway. As much as possible radiate calm, in control, happiness. 
 

I realize it’s much more difficult to de-personalize anything with a parent, especially a mentally ill parent.  Anything that helps make it not personal and helps you remember it isn’t something she can control will help you cope. And whenever she says anything ridiculous try the three slow blinks, as if it’s taking you a moment to comprehend. Then apologize for their feelings.  You would never want her to feel cold.  Then (gently) smack her with reality. The reality is you’re busy with this right now. If she’s cold she can go upstairs and get a sweater or go to the thermostat and turn the heat up. She’s been cold a lot lately.  Would she like for you to order her some long underwear?

Thanks for all of this. The specific examples are really what I need.  I love the three blinks.

I do have a copy of the 36 Hour Day, and should pull it out again.  She’s been diagnosed with dementia and it’s definitely an issue.  It’s very difficult to tell what’s what on a given day.  She has been hospitalized twice in the past two years for the Bipolar/mental health issues, and goodness, it’s hard sometimes for me to tell what is dementia, what is a bipolar episode coming on, or what’s just a personality trait.  

Not that it really matters, I’m not going to react differently - staying calm and positive works best for all of those.  I do find if I can pinpoint a cause I feel more sympathetic though.  Like a few days ago, she was clearly in a Bipolar downswing, and stood up from her chair in the living room, in a huff, said loudly, “I’m going upstairs.  No one has said a word to me since I’ve been down here!” (This wasn’t actually true, but we were not “visiting” as we were doing schoolwork, but she’s right in that we were not entertaining her.) That event bothered me, until I spoke to her and could see the depression spiraling.  At that point, I could see that she needed help using her coping tools, and could help.  We were heading into the same territory today, and I attempted to head it off. She wanted to come downstairs during school again, to be with people, and I reminded her that we are working, and if she needs conversation maybe she could call one of her friends now, and we can visit when school is over.  

[freesia]

I am agreeing that it is totally reasonable for her to have food the others don't eat.  We manage this with my dh's allergies (he has his own cupboard and fridge drawer so the foods he can eat don't disappear and leave him with nothing to eat.  I grew up with a diabetic dad and understood he had some food we couldn't have.

I wouldn't wait on her for sure.  I might occasionally ask if she is comfortable when I felt willing to help.

[kbutton]

6 minutes ago, Storygirl said:

Depending on your family dynamics and the ages of your kids, enlisting their help may or may not work, but I'm tossing it out there. If they know that sometimes they are "on duty" and that other times, they can tune her out and be "off duty," I think it could be okay. And then you would also benefit from having some "off duty" time.

My brush up with elder care is not the intensity of Storygirl's, but I agree with this.

I had some times in high school when I helped my great-grandmother, but my role was largely to support her husband by being another person in the room that backed him up. She would be less likely to put me off than to put him off. There wasn't any serious dementia in the picture. Also, I had a great-grandparent live with us for a few months. He didn't have dementia, but there were some times that I felt like his needs interfered with things in a negative way and were not addressed (there was more going on with other household stress too). For instance, he was super hard of hearing, but my parents wanted him to answer the phone. This also means we had to turn the phone ring up to a point that was terrifying every time it went off. As long as you're not throwing the kids under the bus, and you're helping them know what to expect, I think having them help with cut and dry needs could be helpful.

[kbutton]

4 minutes ago, Spryte said:

Like a few days ago, she was clearly in a Bipolar downswing, and stood up from her chair in the living room, in a huff, said loudly, “I’m going upstairs.  No one has said a word to me since I’ve been down here!” (This wasn’t actually true, but we were not “visiting” as we were doing schoolwork, but she’s right in that we were not entertaining her.) That event bothered me, until I spoke to her and could see the depression spiraling.  At that point, I could see that she needed help using her coping tools, and could help.  We were heading into the same territory today, and I attempted to head it off. She wanted to come downstairs during school again, to be with people, and I reminded her that we are working, and if she needs conversation maybe she could call one of her friends now, and we can visit when school is over.  

I wonder if a visual schedule would help with this, or if it would be hard to get her to notice it. Something that indicated you are in school and can help, but not there for visiting. It might help show when you'll be free again or when she can anticipate someone checking on her.

[Spryte]

I want to reply to each of you individually, but goodness, I’ll end up writing a book here.  You are all such a huge help.  Thanks for sharing your experience on this!

I’m going to set aside a shelf for her foods, and a part of the fridge.  I’ve found that nights that I set out her breakfast food on the counter, the mornings go smoother, too.

Getting some of the breakfast issues fixed will make everything better. Anything that happens post-coffee is easier to handle.  🤣

[Spryte]

2 minutes ago, kbutton said:

I wonder if a visual schedule would help with this, or if it would be hard to get her to notice it. Something that indicated you are in school and can help, but not there for visiting. It might help show when you'll be free again or when she can anticipate someone checking on her.

It might help to write a schedule on the board in her room.  She has a blackboard (our former homeschool room!), and we have boxes that she checks off for her water intake every day, so I know she reads the board.

I’ll try it!

[Spryte]

I do wish we could afford an excellent memory care unit for her, but it’s just out of reach for us.  Her income won’t support it, and we can’t supplement enough to make it happen.  Plus, I think there are advantages to her being here, especially with Covid.  We have been unable to visit my ILs since March, and I feel like my mom would just wither away.  
 

Elder care is hard!

[Junie]

2 hours ago, Spryte said:

Oh, Junie, I don’t think you are even close to being in the same league. Huge hugs to you, chronic illness is hard, hard, hard.  I don’t want you to feel that you’re in the same ballpark.  I’m 100% sure you are not.  
 

I do think some of it could be pride.  And some is just ... it’s just her.  Her dad, a wonderful, kind-hearted man who was consistently positive and thoughtful, once said that my mom couldn’t help it, that she was born with lemons in her mouth.  We all love her, and work around it, she has amazing good points, but this one personality trait can grow tiring when living with it day in and day out.  

Well, maybe you're right that I'm not in the same league, but I want to get it under control now so that I'm not like that when I'm older.

[Spryte]

Just now, Junie said:

Well, maybe you're right that I'm not in the same league, but I want to get it under control now so that I'm not like that when I'm older.

I think your self awareness is such that you just won’t be that type of person.  Really.  I know we haven’t met in person, but I feel I know you a little bit from the boards and our pms.  😊
 

The examples I gave are all so trivial and vague.  And I could be guilty of any of them on a given day, too.  It’s more that there’s an overwhelming cloud of complaints, and rarely a positive word, that’s just so painful for the four of us who live here with her.  I have spent a lot of my life trying to make my mother feel ok, feel better, be happy.  It was an impossible task, and I’m relieved to have released the burden and just care for her as best I can now, with love. Now I need to learn to manage her words in a way that shows my care and concern for her, but also frees my family and me to be happy, even when our elder isn’t.  I will get the hang of it.  Someday!

[Spryte]

@Dreamergal Thank you.  So, so much.  Your posts often resonate in a good way. 

I think it’s absolutely right that the loss of independence is painful.   The pandemic has been hard on my mom.  Some here know the circumstances that led to her increased dementia that led to her moving out of her little senior apartment and in with our family.  She had a traumatic experience that led to losing her senior community, and independence.  She can’t recall all the details of that experience (thankfully), but she often feels the loss of social time and friends.  I need to remember that she’s still feeling the stress of that, the trauma stress, even if she doesn’t remember it.  I’m sure, deep down, it’s all connected.

I think, too, since she arrived here unable to care for herself, she’s maybe in the habit of me doing everything for her, which hasn’t helped our situation.

Though, hmmmm, the complaining thing isn’t new, really but more of a continuation of her normal.  You’d think I’d be better at managing it by now, after a lifetime!

I have a lot of new tools to try, thanks to everyone here (you are all The Best!), and I’m looking forward to seeing what works.  

She’s coming downstairs to hang out for a bit now, and I’m going to spend some time listening to see how she’s doing this afternoon.

 

 

 

[prairiewindmomma]

Selective deafness is best, imo. The dementia complicates things, in that normal feedback won’t be retained.

I do agree that trying to see what she can do independently would be wise.  I think, emotionally, she wanted to feel taken care of and feel secure and her complaints were really her trying to voice how insecure and angry she was about her loss of independence. (She had broken some ribs and could do more for herself but wouldn’t.) 

I found posting a menu on the fridge and a list of snacks “for the kids” helped. We had an open wicker basket on the countertop labeled “snacks” people could eat from at will... I had a similar plastic box in the fridge. It had to be open and visual because she had some memory loss post-surgery for a few months. She is back to independent living, at least until the next crisis.

As to the social stuff, I feel for all of you. 
 

My best advice is to address all problems from the emotional angle. The rationality ship is sailing away, and figuring out what emotions are driving her behaviors will help. Unfortunately, the difficult elderly in my life have all tended to become more difficult...so, post-pandemic, finding breaks for all of you will be important, I think.

[Spryte]

@prairiewindmomma Snack basket is a great idea! Kids would like it, too.

And I like the emotional angle.  There’s no reasoning about anything, and we won’t be changing any behaviors.  All we can do is work with what we’ve got, so I know any changes I need have to come from me.  
 

We all try to remember this is hard on her.  She is/was a metal sculptor that traveled the world, alone and/or with a Nat Geo photographer.  Fiercely independent.  Self proclaimed control freak. The kids love seeing her pics, and all the stuff she brought back.  Anyone remember the girl’s grandma on the show Little Bear?  Kind of like that, with the kooky travel history and trunks full of treasures.  

[easypeasy]

Spryte, I am too overwhelmed reading your post to have any coherent or helpful ideas...

but here's a huge hug for you. 🤗 Just cuz... wow. That would be a lot day in and day out. I see this in my future and it just sucks the air out of me. So 🤗🤗🤗🤗🤗🤗🤗🤗🤗

[Spryte]

24 minutes ago, easypeasy said:

Spryte, I am too overwhelmed reading your post to have any coherent or helpful ideas...

but here's a huge hug for you. 🤗 Just cuz... wow. That would be a lot day in and day out. I see this in my future and it just sucks the air out of me. So 🤗🤗🤗🤗🤗🤗🤗🤗🤗

Thanks!  And ...

May it not be in your future!  🤣 Well, not the complaining part.  DH and I joke that we should have been the smart siblings who moved far, far away, but nope.  We moved all our parents close to us, knowing we’d need to help out.  Aaaaannnd... here we are.  
 

This one part is hard.  Other parts are hard, too.  But there are lots of rewards, and there’s lots of love.

[prairiewindmomma]

I just realized that editing my post took out some details out that make the rest of it not flow well. Sorry about that. It is hard because you want to preserve their privacy to some degree and get the struggle is real.

Hugs.

[Spryte]

43 minutes ago, prairiewindmomma said:

I just realized that editing my post took out some details out that make the rest of it not flow well. Sorry about that. It is hard because you want to preserve their privacy to some degree and get the struggle is real.

Hugs.

Yours was perfectly understandable!  Thanks.

I just reread a post of mine, above, and it also lost its flow when I edited it.  Hopefully you all can make sense of it.  Ha.  Well trained mind, indeed.  Oops.

[MercyA]

Spryte, I think you are amazing. Huge hugs to you.

[katilac]

9 hours ago, wendyroo said:

 My go to line is, "Let me know if there is something specific I can help with."

"My peanuts don't taste right."
"Let me know if there is something specific I can help with."

I worked in a Montessori classroom one year, and they taught us to respond with, "That's unfortunate." 

"I don't want to do math!""

"That's unfortunate." 

"Ms. Katilac, I have to stay in at recess today." 

"That's unfortunate." 

"I hate this school and I hate you!"

"That's unfortunate." 

I think having a few of these phrases at the ready is very helpful. Sometimes there is truly nothing helpful to say, yet you don't want to ignore the person. This acknowledges their complaint without taking ownership of it. 

8 hours ago, Spryte said:

Unfortunately, not quite.  Her income, frustratingly, is $80 too high to qualify for community based care. 

I will never understand why all of these programs are not pro-rated. So Person A, who makes $110 more, loses $5,000 in services, meaning that Person B, who started with $110 less, actually winds up $4,890 ahead of Person A. It certainly seems like it would make more sense for Person A to get about $2,390 in services and Person B to get about $2,610 in services. I mean, possibly not that precise, but it's a little crazy that having $80 additional income means you qualify for zero services. It's not like that $80 is buying any kind of care.