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.
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.
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.
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?
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.
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.
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