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.
True she has dementia but catering to her and jumping right to it will only make her worse.
As you say she has three caregivers. So her needs are met. The other nonsense should just be ignored.
In the week since I posted this, Mom turned up the heat and wanted me to drop everything three times to come over and either bring her something, or show her something on the TV, on the computer, etc. neither one of which she can see or hear well on. Two days after this post she called me on Skype to get her a list at the drug store and bring it across town, a 30 minute drive, on a vacation day I took from work (and everything else). I said, "I am not driving all the way across town for this." This was the first time in 25 years I'd ever said such a thing and I'll be honest, it's like a puppy that scares itself the first time it barks.
Her caregiver for the day, in the background said, "the (same drug store) is just up the street here, I can get it for you." She was absolutely incensed that I said no, but dialed it back when the caregiver said she could do it. "Mom, you can have things in 10 minutes with (caregiver) right there. Why do you need to ask me? You have three wonderful ladies to help you and they love you dearly. Give me this day." Crickets...
Maybe it takes time for her to learn (although it's been nearly two years) what a hired caregiver's capabilities are, or maybe it's just been so automatic that I said 'how high' when she said 'jump' all these years that she expects me to just be the person-that-does-it-all. But when the caregiver showed up with the groceries/items that she wanted, she was like, "oh...there's someone else that can do this?" Maybe there's a learning curve I'll give her that benefit of that doubt. But that's all. Her bills, taxes, vendors, and whatever else get paid by me (by way of her bank account of course) and I keep her lights and gas on, among other things. My husband by the sweat of his brow and vertebrae of his back has also tried to please that woman only to have her come up with more. Enough, is enough.
All I know is that for a woman who demanded so much of me, who cannot demand ANYTHING of me anymore, it's going to take some time... But for me that time is now.
Thank you forum, for hearing me out all these years. I will survive this because of all of you. I pray we all would or did have The Brady Bunch or Leave it to Beaver or Donna Reed show as families. That ain't always the case. What would life be like, if it was.
Your Friend,
MDaughter50
My Mom is caring for my blind bed bound Father with dementia at her insistence. But she also needs lots of support and it’s been going on so long. I can sense her decline as well. They are 85 and I’m 63 with health problems, disabled husband, and full time job.
I won’t go into my past details growing up, but my Mother expected me to take on great responsibilities of our household at a very early age and she still wants that from me. I’m not doing it this time. She and Dad refused to look ahead and make smart choices for aging in place. I love them but I don’t want to resent them more than I do already.
So acknowledge your feelings and perhaps do virtual therapy. It really helped me stand up to Mom in a healthy way. Now I won’t have regrets one day yet I’ll have done what is right for all of us.
THIS.
My mother will often hint at that she thought there would be "people around me," to help her out. Never once giving rise to the fact that burning bridges and bad behavior might have a say in the fact that won't happen.
I am also now dealing with a MIL who has the same issue. "Well, I never THOUGHT I'd get sick," she said when she came to stay with us. Of course no one thinks that. And no one in the world would wish for that. For years she would also tell DH, "I'm fine. I don't need to see the doctor. They only want my money, they are so greedy." She has stage 4 Ovarian now.
I have found a therapist and I will continue to move through life the way I need to - but thank you for mentioning the 'smart choices.' We all need to make them, because it's not up to us 'kids' to make them for our parents.
You walked away and took care of yourself, because no one else is going to stand up for you but you. I tell my grandkids that all the time, stick up for yourself even to me or their parents. No, she's not going to change, this is just her personality. as children we always want to please our parents, and we try and we try, but now you're an adult and you know better. Kudos to you for helping at all, even if she won't appreciate it.
When the answer is a flat NO, I have learned to acknowledge what he said , like . “I know you would love to fly north to attend the school graduation party , we will have to give it some thought .. “ and leave it at that . Things like that .. It might not work with your mom but you never know . There is a list of “ Ten Absolutes” to use when dealing with a Dementia patient. It has really helped me . I got it from my caretakers group . I tried to copy and paste but I wouldn’t work .. Prayers are with you .
A patient like my mother needs boundaries, so saying no is still at this point truthful and honest with her. If I cannot do something I need to tell her no. With her it won't work if it's a 'yes, I'll let you know," or words to that effect, she has a lot of sharpness when it comes to her needs.
And for some reason most of not all of them still have to be met, by me, despite hired care for her 10 hours a day.
Mom just needs to really learn to ask her caregivers for more -like light grocery shopping or help with a computer here and there - which they are all capable of doing. And, it is up to me to say, "hey mom ask ____ (caregiver) she might know, and you can have it done in minutes." She'll give me the, "Oh, I don't want to ask HER to do THAT," in which case I have told her, "then how's it going to get done?"
With your Mom, it sounds like it’s not HER. It’s the dementia. Reasoning, admonishing her, getting upset. She won’t remember—she might remember the emotional hurt.
Deep breath. Time for you.
But when these come up “ sure Mom, I’ll take care of that right away for you.”
Or try creative, “Mom I don’t have enough gas for that trip and the gas stations are all closed. I’ll take care of that for you tomorrow.” “Okay.”
It just depends upon where she’s at with the dementia. Will she accept the creative response or is she still cognitively alert enough to know it’s a fib?
I had a young caregiver who’d worked many years in a retirement home tell my Dad they couldn’t report his missing cattle, because the Sheriff’s office was closed. “We can do it tomorrow.” Dad: “Oh, okay.” By tomorrow, he forgot all about it.
I’ve found there are no resources or support for the ‘incidents.’ I have to figure it out as I go along. I just try to be living and kind. I know it’s not really HIM.
Reading through comments I can see that others can relate while some cannot.
Some days my once athletic son's demands are unreasonable to lay on me when it is 100 degrees and I can no longer drive - I take the city bus.
None of us in the position of full-time caregivers of loved ones are asking for a "pity party". We only need our feelings of overwhelming exhaustion validated.
I'm a retired RN. No, I am not perfect. But I have a bag of tricks.
1) I write down the problem, much like MDaughter50 wrote.
What words I use aren't professional. It is important to remember that Caregivers are human beings, too. We all have to find a balance. Our loved ones are not going to grow out of it like a baby will.
Writing down the problem gives us time to clear our heads and our emotional buckets instead of overreacting and snapping back.
2) I look at possible causes for the demands.
a) When my son is 'acting like a complete jerk' and I want to run away from home or quit - that is a CLUE that he may be developing a UTI - urinary tract infection.
UTIs are common in the elderly. My son has a neurogenic bowel and bladder. To manage his bladder not being able to empty he has a catheter placed through a permanent hole in his belly. (I'm not suggesting a catheter is an answer for someone with dementia. This is just a medical solution for him that still carries a big risk for bacterial infections to occur.
UTIs can change personalities. They can make people mean.
b) Look for opportunities to make their environment safe, more comfortable, or independent.
*Having your thoughts written down can be an enormous help later when you address your concerns about your parents to the doctor.
Remember, you don't have to pretend to be stoic to the doctor. You don't need to dump everything on the doc either. But, that list can really help you feel and look credibly rational.
3) Setting limits or knowing when to walk away is extremely important for everyone.
Setting a limit is NOT about arguing, or putting mom or adult child in their place. It can be that you may need to "disrupt a behavior" or 'break a pattern" in your reactions. You cannot "fix" the adult with a deteriorating disease. There is NOTHING ideal about caring for a loved one who is losing control of mind/ body.
It is emotionally devastating for caregivers who end up sacrificing normal mental health balance for that loved one.
Please do not shame a caregiver. Please don't let someone shame you.
My expertise is behavior management of children not dementia. But there are similarities that can burn out a caregiver, even the very experienced ones.
------------- Silly Rabbit.
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.
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.
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!
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.
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.
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.
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.
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 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.
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."