I probably know the answer, I just need to get it out there, and I know I can in this forum.
Mom wants everything RIGHT NOW. I have been at a conference for the last week and was dead tired when I came over to check on her. "Go pick this up!" She broke an appliance and ordered a new one and asked 3 times for my husband and me to go get it and replace it.
I told her no, after what I have been through all week, then coming home to a sick dog, there was no possible way that I was going to drag my half dead you know what across town, pick up her new gadget, put it together, install it, etc. Mind you it's also in the 100's outside today.
When she hears the word no, good Lord does she throw the tantrum to end all tantrums. So I told her, "I am tired, I have a sick animal, this is NOT an emergency. You need to STOP getting so upset (there was a word before upset) over these things." Now she has vascular dementia so that's not going to happen but it WILL be brought to her attention.
She scoffed and she huffed at the fact that I was so tired. "I am too." The woman has THREE caregivers that do everything for her, so you know, it must be exhausting watching all that.
I turned on my heel, said good bye and out the door I went.
The invalidation of my feelings, or needs, has always been a problem but now with her small vessel disease in the brain it is magnified beyond words. However her brain is not so broken that it can't be pointed out that I am dragging, horrendously tired, distressed about the dog, oh, and just recently had a cortisone shot in my shoulder FINALLY after hurting it when I tried to stop her fall earlier this year.
No, mom. Not today.
I always thought those words would never come. But when it comes to a kitchen appliance and the world is going to end if I don't go get it, they are VERY easy to say.
And congratulations on using the word no and sticking to it.
I would like to suggest that regardless of your mom's personality prior to dementia, it will be unproductive for you to keep reacting to her as if she's her "old" self with her well-worn motives and manipulations. Dementia is robbing her of her ability to work from reason and logic, and any ability to empathize with anyone's circumstance, health, condition, etc. You may find that changing tactics will be less frustrating and exhausting for you. Feel free to use "therapeutic fibs" to get her focus off what she is stuck on: "Mom, I'm so sorry but the store has certain hours for pick-up and it can't happen right now. I'll call them in the morning to see when I can go." If she repeats her demand, just repeat the fib, and then eventually use diversion and distraction to change the topic.
I found this list to be very helpful in my own caregiving situation, and I think it will help you, too. I also recommend watching Teepa Snow videos on YouTube to understand what dementia does to people and to learn how to interact with them for more peaceful and productive engagement.
Rules for engaging our loved ones with dementia:
1) Agree, do not argue
2) Divert, do not attempt to reason
3) Distract, do not shame
4) Reassure, do not lecture
5) Reminisce, do not ask “Do you remember…?”
6) Repeat, do not say “I told you”
7) Do what they can do, don’t say “you can’t”
8) Ask, do not demand
9) Encourage, do not condescend
10) Reinforce, never force
The overall goals should be to:
1) keep them as calm and peaceful as possible
(because they are less and less able to bring themselves to this state on their own)
2) keep them physically protected in their environment and from predatory people
3) keep them nourished with healthy foods that they will accept without fighting or forcing
4) keep them in as good a health condition as is possible, that their financial resources will allow and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)
5) keep them pain-free as possible and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)
The caregiving arrangement needs to work for both the receiver and the giver. If it is onerous to the caregiver, then the arrangement is NOT working. Alternative types of care must be considered to avoid caregiver burnout.
It is true, I fall in to the trap of her supposedly, "knowing better," but with the toxicity she had prior to dementia, and now the magnification of it, it is hard, very hard, not to get angry. She uses guilt and manipulation tactics to try and make me do things - a good example, when my husband and I were dating before marriage, she would make us do her grocery shopping "before we went out on the town because you're still right here in the area." So our dates would be late or delayed because she needed me to do these things before I went out for fun.
Thus, I probably set up that trap myself but I had no coping skills back then.
Her screaming at me today just brought it all back.
Love the above statement. Short. Informative. Assertive.
Maybe an add on?
Eg "No, Mom. Not today" with "I can't. You could ask *insert: paid caregiver's name* when they next visit. Don't worry, it will get done".
Kind of using Geaton's points 2) divert + reassure 4).
My folks still viewed me as being 25 years old instead of 65 years old with my own age related issues. Even waving my own Medicare card and my AAPR membership didn't sink in.
When they asked me to change the light bulbs in the ceiling lights, they looked at me like my hair was on fire when I said I no longer climb ladders. Eventually they called an electrician who changed the bulbs.
Oh how I wished I would have set boundaries when my parents first started to need extra help, it would have saved me a lot of stress and health issues that I had developed.
My mother will start sentences with, "I don't want you driving alone."
"Don't get in your hotel elevator with anyone." (I am extremely cautious trust me, but I also practice martial arts and could seriously bloody a lip ...)
"I don't want you walking through the mall by yourself."
Mind you I am 50 years old. She'll do the "It's just because I care," thing, so the last time she said that, I told her, "then just say 'be careful!'".
Then the other day I finally had to breakdown and get a cortisone shot in one of my joints. "Oh it wasn't hurting you THAT much." No, sure, I do cortisone for fun.
Denial of what scares her makes it not real, but it does not help me at all and she's done it ever since I was a child. In fact today I asked her, "Are you at all aware I'm FIFTY years old?" Which, I might add, I find to still be quite young.
I answered it because like you she wanted me to get the ladder out and dust the top shelf in the living room, this after a cortisone shot and a migraine the other day. So I told her to get one of the licensed bonded and insured caregivers to do it - who asks daily if she can clean the top shelf.
"Well, I'll think about it."
"Bye."
There was a very l.o.n.g thread way back describing the daily demands from an undiagnosed MIL.
The intention of *one day of help offered per week* was good. Just so hard to implement. Constant daily calls, expectations & pressure would spill out onto the OP. When she said "No, not today..." then her DH, SIL or adult child would have been phoned (also busy) so added pressure to the OP "can't you just... Just this once.."
The "I forgot I need.." calls - when OP had done ALL the shopping the day before.
The "I need X. It must be today!" An assortment of things most folk buy in advance - dog food, printer paper etc.
"Did I tell you I have an doctor/heart/eye/foot/skin/hair appointment TODAY & I need you to drive me".
"I need the leaves raked up TODAY because I may slip outside!"
Add on time Mission Creep too +++
Grocery collect 1.5 hrs. Oh but get coffee, haircut, specially dog food store other side of town, now may as well buy lunch... then post office, few more shops, may as well order dinner for takeaway now to save cooking later, from that great place 15 mins away.. ok bye now I REALLY have to go. Be back NEXT week.
Then very next morning... ring ring.
Does it get worse you ask?
hug! :)
i see what you mean, try the:
“right-back-at-her technique”.
i can tell you clearly that in my case, it wouldn’t work. my LO would then:
pretend to cry, and tell everyone how she’s the victim of someone else’s angry outbursts.
—
i’ve never tried it. but i know that would happen. even when my voice sounds a bit less than cheerful (for example, maybe she just insulted me), then she criticizes my voice, plays the victim.
all these abusive people (often they’re female; mothers) do the same thing all over the world.
and the more abusive they are, the less any technique will ever help against it.
the only way is:
make yourself unavailable. reduce contact. don’t be physically present (or phone), to be the target. reduce the quantity of target time.
——
as margaret below me suggested:
“I think the best outcome is that you finally said “No Mom. Not today’.”
i do that.
my LOs have private caregivers, so i remind them to ask the caregivers to do x, y, z.
——
courage to us all!
helping someone is hard enough.
helping a difficult person? totally unnecessary, additional stress dumped on your shoulders.
It doesn’t matter what her disease process is. You cannot allow yourself to become a slave to it. Tell her “No” whenever she makes an unreasonable demand and mean it; stay strong, and do not give in. If she begins to throw a tantrum, leave immediately.
The instinct for survival will result in accommodation, no matter what disease she has, until she loses contact with reality. It doesn’t sound like she is at that point. You might notice that she still has mental acumen sufficient to pick her targets. If she’s well enough to order gadgets, she’s well enough to bend to your demands for peace and reasonableness.
If she’s doing this to the caregivers, you also need to advise them not to bend to her unreasonable demands and back them up when incidents occur. It’s difficult to reason with any elder who mistakenly believes she is and always will be “in charge” so don’t even try. Just refuse without bothering to explain your reasons.
Indeed, she was. Now, when she hears the word 'no' or 'not today,' it is a personal affront to her. She wanted stuff again today and I'm laying here with a migraine. "oh well maybe you'll feel better later and can..."
"No. We'll get it done tomorrow."
A mini toddler tantrum but otherwise manageable. As I mentioned before her dementia is not severe, and it is more in the execution and planning area more than memory or confusion or anything else. She knows where she is, what she's doing, and of course, what she's saying.
great advice to the OP!! i’ll try to follow the same advice.
reality:
some abusive parents have always been abusive, and it really isn’t the disease.
nevertheless:
if you can manage not to take it personally, you’d probably get less hurt/angry. it truly isn’t a reflection of you; it’s about them - and they’re saying lies about you, trying to bring you down, brainwashing you, trying to make you believe it’s your fault. kind of like what an enemy would do against someone - but it’s (in many cases), the jealous mother against the daughter.
She is still just as demanding and entitled as she ever was, and I blame it on her personality and being coddled her entire life rather than the dementia. The dementia has only served to harden it and eliminate what ability she had to empathize with others and be self-aware.
When I was growing up, her job was the most important thing in her life and everything and everyone else came second. She forced me to be the housecleaner, the table-setter, the bed-maker. My now-deceased brother would laugh and say "you were her slave".
If I didn't abide by the chores and rules I would get screamed at and told that I looked like "dead flies are dropping off of you" and other charming comments.
We only had one shower in the house where I grew up, and no one - I mean no one - could shower before her in the mornings because she didn't like wet shower curtains. Just one of many demands that were met for her comfort.
And now here we are. I'm still her indentured servant at 63 years old.
Her demands are constant and relentless. If I don't answer or respond right away, she just gets louder until she's literally barking my name and demanding that I
"come here!!" Just yesterday afternoon as I was within 4 feet of her this happened and I told her - as per usual - that I will not respond when she speaks disrespectfully and she refuses - shakes her head no.
She's not going to change, so it's my responsibility to not be triggered and to give her whatever it is that she wants so she'll be quiet for a few minutes.
i’m in a similar situation, but i live in my own house. i visit my LOs and help out. the way your mother treats you, is the way my mother treats me.
…screaming louder and louder to get what she wants. fake tantrums, etc.
sometimes abusive fathers can be reasoned with more. abusive mothers sometimes have no mercy how badly they treat their daughters. (there are all sorts of exceptions; i’m just speaking generally).
i wish you to be free of abuse.
i wish us all to be free of abuse.
Try to steam line everything. The good news is pretty much everything nowadays can be delivered--prescriptions, clothing, groceries.
If you need anything major (appliances) if you can wait til Black Friday--you can do all of this online. I'm not a big online shopper. I agree with Dave Ramsey "one click of button and there's a box on your porch". Buy only necessities.
With the elderly a little thing to us can appear like a big thing to them. My mother thought we were running out of facecloths even though we just bout a 24-pack from Walmart. They worry about these things. Just hold their hand and tell them your needs will be provided or sometimes I simply say to Mom with dementia--good thinking, we'll get more facecloths.
They think they are helping. Their brain is wearing out and they become fixed on one particular topic.
Sorry you are having to deal with this, it is all so hard. And yes, it just gets worse (my experience and still going through it).
Firm boundaries are key. My 85 YO mom in a nursing home now 2 years (dementia and a host of other mental and physical conditions), at first she kept asking for things over and over. Bring this or that, it was never ending: Me: "Mom, I already brought it." Her screaming: "No, you did not bring it. You never do what I tell you. You have to do what I tell you to do!" or Her screaming: "You brought me the wrong sweater, I wanted the blue one. You can never do what I tell you to do." (of course, she asked for the blue one....) Maddening. My solution to NOT bring anything further.....One day, I just said NO, nothing left to bring. Staff tell me if she needs new tops or bottoms, all have to be easy over the head loose tops and pull up type cropped PJ-type bottoms (cannot do zippers, buttons, etc now).
Do what one can to "not take it personal." This one is really hard to do especially if the abusive verbal, victimhood, guilt tripping, patterns were all there well before the dementia diagnosis. Often dementia (they loose their "filter" more and more as the disease progresses) just ramps it all up. Sadly, the abusive pattern (toxic frankly) was my entire childhood (that is another story).
Visit or call when it works for you and set time limits. I initially started with one call every other week and then on the opposite weeks a 30 min visit.
Go low or no contact, if you have to. Part of my low contact in year 2 was to block her number. I had set up her cell w/a picture of me to press to call me years before (oh, why did I do that). She'd press the image over and over all hours of the night. The calls never stopped. So blocking the number was the solution. I can then choose to see if she called (the call does not go through, but she can still leave a message.) Often there is no message, because I think she has forgotten she can leave a message. Sometimes, it is a rant. I look and listen about every 2 weeks. The nursing home will call me if there is "any change in status."
My mom did live with us (my husband and I and our kids) for a long while before the NH placement. We tried to handle it but it was NOT sustainable. She would fall, and I could not get her up. My husband (he has a back back) and I would struggle to get her up. The crazy rants, the nocturnal behavior, the refusal to take Rx meds (because she "didn't have that disease -- diabetes, heart disease, thyroid issues, high cholesterol, arthritis, emphysema). Me: "Yes, mom remember we just saw the pulmonologist for your emphysema and you need to take X." Her screaming: "I don't have that!" -- she's had it for 15 years, 3 pack a day habit since she was 15, only quit when she moved in w/us as that was a requirement -- no smoking allowed in my house.....)
So yes, it just got worse and worse. She is in one of the best nursing homes in our state, hates it and hates me for NOT allowing her back into our house w/the expectation I would handle all her care by myself. She had a bad fall, a collapsed lung, a resistant bacterial and also a fungal infection (IV antibiotics for 8 weeks) and a GI bleed that landed her in the hospital for 2 weeks. Post hospital it was off to a "rehab" hospital because of the IV antibiotics. Thereafter, I said NO to her coming back to our house. Her behavior only got worse and worse towards me. That is 2 years ago now and after going low contact, I am now in full no contact mode. Again, the NH will call if there is a "change in status."
If I may suggest, everytime you're stressed, and about to check-in on your mom, imagine yourself appearing before yourself in your most peaceful and in-charge frame of mind (too perfect for even make-up, with your hair moving in a lovely ghostly breeze), acting like a beautiful Stop Sign blocking your way. Take a detour away from her direction, regroup, see her after you've well deservedly collected yourself and feeling 10 ft tall than her.
As you already brilliantly touch on and know, the world won't end. You are more right than you will allow yourself to acknowledge.
Take a day to relax after a hard grind and take care of what's important to you. If you can, go for an easy swim or something else that doesn't require much from you. Drive to a park if only to stare out while sitting on a bench. Peacefully enjoy sweet nothing youtime.
It's difficult to think when you're already spent, tired to death, riled with nothing left to give, and yet your nerves, and an unreasonable sense obligations will push you like a race car forced to take yet another lap (seeing your mom). In such a state self-protective thoughts are hard to come to you. The body and mind will keep speeding forward recklessly from the momentum and going reverse rather than striking a wall is rarely a considered option. Reverse is good and mind blowing.
Everytime your mom, the sad mental blank slate parrot, starts drilling, say; Yes, right away mom, or some other (I know you'll want to gag) affirming pleasantry, and/or walk out. Do what you can when you can.
Part of the problem is that we all, all, think deeply that we need a mother's validation. You were starved and you have to learn, know, understand down to your marrow that it's not "a score" to get validation from a broken person. Stop.
Get a delivery person to install the appliance. If it's not possible, then with your confident head up, and a wonderful "oh-well" breath out, think - "It'll get done. I am reliable. I am a charitable person. I give time, effort and serious concern even when I'm not with her. I am a caregiver."
You are terrific even though there is no appreciation and you feel like you're casting pearls to swine. You're very terrific. Who would do what you do?
Remember you have a reverse gear. Have fun with it.
Yesterday it was all about buying a golf cart (she can’t drive) and what money she has in the bank (none.) After driving her to golf cart stores around town all day she wanted me to help her on computer to see bank info ( it takes hours because she can’t do tech anymore but insists on doing it herself. I have health issues and had to lay down but no she kept pushing. So I went in my bedroom but she opened door to wake me up about 10 minutes later. I got up and beat her to the computer, wrote down bank balances and went back to bed with locked door this time. She found it locked and flipped out Bang on door, looking for key etc. Later all was fine.
Wasn’t till the next day I figured out why it happened and what I should have done. I should have acknowledged how frustrating it must be not to be able to do the things you used to like driving, using a computer. You’re really tired now which makes the frustration even worse, and all of it hard to understand. Why don’t we both take a break and work on this later.
Not sure it would have worked but would have kept me calmer!
If they do not work for her she can hire someone to do what she "needs/wants" done right away.
YOU give her the amount of time and the day that works for you and your family. THEY come first.
A possible solution for you would to be order. Schedule a time for things to be done, like Saturday mornings. Be sure that you keep the schedule, because if you don’t, it won’t work.
Make a list and put it on tve refrigerator for her to look at with time, day, date and to be done list, and when she ask again and again, point her to the list. Add things as she needs them.
Her world is changing, but something steady can help her to keep her place. She is scared. When we get old, we lose so much security and stability just because of age, if there is nothing else happening. I am soon to be 89, and my mind is still sharp, but my body unfortunately has many limitations.
Fortunately I have sons, and they work on my lists. For my hands on needs, we hire a care giver to come for a few hours weekly. It’s worth the cost. It’s somehow harder for daughters to not start thinking that they are the parent. My daughter has treated me like I was her misbehaving 3 year old since she was 30, so I thank God for those 1700 miles. Remember this, if you don’t die first, you will get old, and you will need help. Never forget that, and it will make caring much easier. She’s your mother, not your child. Her condition doesn’t change that, but you are now the responsible one. If you have children, they are watching you, and learning how to take care of a parent. God bless you.
This forum is making me realize that I really really need to be looking forward at all times, as I age I have to have a plan in place. I will never be able to afford assisted-living, so I have to eventually find a mobile home in a 55 and over community somewhere, and then eventually go with a nursing home paid for by the state. I don't mind, I don't have a home of my own, and I know what my 98 year old mother is putting everyone through. I don't believe for a moment that my daughter will take care of me. She'll be working full-time regardless, even after the grand kids are grown, and she stresses out at the drop of a hat. No thank you.
Whether she can help herself or not does change the end result. Just because she is her parent does not mean the OP has to take the abuse. When you are being abused by someone there is nothing to be grateful for. The selfish one is the elder that expects everyone else to give up their lives so no changes have to be made in theirs. You were lucky that you found purpose in caring for your parents but not everyone else does. What worked in your life does not work for others and that is why they are here. Not to be lectured by a martyr.
In the meantime, you can interview some, "Visiting Angels" to spend time with mom and help her with her purchases, then you can be her visitor instead of her helper.
When my son needed help with doggie care, he hired helpers from CARE.COM - mostly students, but sometimes retired people.
My mom has 3 caregivers that rotate throughout the week - my sisters and I found them and they are wonderful. Mom is incredibly nice to them. Then there’s Cinderella over here…
I should add that my mom is not like this 100% of the time but she pulls this often. She understands that she has a mild form of dementia but chooses not to believe it. “I don’t think I’m THAT bad.”
She’s pushed many family members away over the years even before illness set in. Now, it’s just magnified her attitude, and being on the defense all the time has exhausted me.
I am REALLY thinking of standing up for myself and going against these stupid arbitrary rules my mom has created because I am an adult but I dread what her reaction would be
"You did WHAT?!?" she would say
Then she would most likely kick me out of the house and right now I have nowhere else to go
It sucks
I have no real freedom or autonomy
I believe she has early stages of Dementia and she is just getting worse & worse!
The invalidation of your feelings is not okay, broken brain or no broken brain. It's very important for you to take care of yourself and your own health issues so that you don't find yourself incapacitated one of these days, God forbid. Learn to say No, as I did. Learn to put yourself first sometimes, and to put mom second. Realize that the earth will still revolve on its axis if she has to wait for something! That her life won't end even though she may tell you otherwise. Know that she can scoff and huff and puff and all the rest of it, but it doesn't really matter. She'll live through THAT too! Learn to tell fiblets when necessary, such as 'the store is closed' or "Best Buy ran out of that appliance" or whatever needs to be said to shut down the conversation at any given moment. Learn to postpone the demands until YOU are ready to address them. Set boundaries and stick to them.
I'm glad you were able to say No mom, not today. You lived through it and so did mom, yay! Keep practicing those words till they roll easily off of your tongue! You'll get to be an expert at it in no time.
Good luck!
It's never been ok for her to invalidate my feelings. Not on the evening of my first date when I was 16 and she said such mean things to me, not on my graduation day when she yelled at me that morning for no reason, and not when my now husband of almost 30 years proposed to me. "I'll bet you divorce him in two years," she said. Yeah well that didn't happen.
I don't know why I still take care of her on some days but on some days she can be a decent person. I'll get along the best way I can, which is therapy and friends and forums like this.
It sounds like you are in that 'sandwich' generation...full time job, your own family obligations, a pet, along with the extra burden and obligation of trying to care for your Mom. The unfortunate thing about dementia or alzheimer's is that it can be unique to each person that suffers with it and trying to find the right words when you're already exhausted yourself can be very tricky, even when you think you found something that works. It doesn't always work the next time...so you'll need to find and load your arsenal of tricks to be at the ready <3 Finding the 'triggers' can sometimes be easy, but I think as time goes by, you'll be in for more surprises along the way. :(
Please try and understand that your Mom's lashing out at you could be her confusion of not understanding what is going on in her world anymore :( What once made sense to her is getting lost and she's scared...and the only person that she seems to take it out on is you :( Could be her medication (if she's on any) needs adjusting...could be that you'll find that barometric changes or the full moon will also intensify how she reacts to situations. Keeping track of when these outburst seem to be heightened might be helpful, so you can discuss things with her physician.
You also sound like you are experiencing, what is refered to, as 'caregiver burn out' and need to find that pressure release valve. If it's possible to take a weeks vacation, and do something fun...plan a few days away to a retreat of sorts..whatever makes you happy so you can recharge your batteries. And once you are rested you'll be able to create a plan that helps balance your needs and your Mom's care..you'll feel so much better.
I didn't read if you are the only child..are if there are other siblings that could share the load? It sounds like you are doing the best you can, feel good about that..it takes a special person to take on this role. Hopefully, you'll be able to find other sources of help for your Mom...and maybe the next time she needs to order something, *suggest* that she choose to have it delivered, that way she will be able to have it ready for the next step (putting it together, or plugging it in) It may give her a sense of still being able to hang onto something she has control over..and you wont be taking time away from your other obligations by driving to the store to pick something up.
One day, you'll only have memories to look back on...I can only suggest you try and make them happy one's if you can. If she has hobbies she can still do to pass the time. My husband is at end stage Alzheimer's and there have been a lot of peaks and valleys..but now, somewhere in that vacant stare, my husband resides. He too has small vessel cerebrovascular disease, making him more prone to stroke. It's been difficult and times, but we all do the best we can, to help them transition from one phase to the next.
Take care and I wish you all the best in finding that balance.
She tries to get me over to her house every day and it’s not for a visit. “Do this, do that, bring me this, bring me that,” all while the caregiver she hired is standing right there. Thankfully they step in and say, “That’s my job.” She’ll go as far as to say, “No no my daughter can do it.” No no she can’t.
She doesn’t like taking mood stabilizing medication so she won’t even though she’s been counseled on how they would help her. It’s a bad time all around.
------------- Silly Rabbit.