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Quick Recap: Last year I became "in charge" of my Mom when my step-dad passed away. She has moderate dementia and can't be left alone. About a year ago, I moved her successfully into a Memory Care Home, about 5 minutes up the road. She settled in, and had a good three to four month run from mid-January to just recently.


Two weeks ago, her brother, whom she hadn't seen in 12 years, was brought to town by my cousin for a visit. He has Alzheimer's, but it was still a sweet reunion. Totally NOT in Mom's normal routine or schedule. Then the following week her personal trainer was out of town, so two BIG changes and coincidentally (or not) she has claimed bowel issues since then.


She thinks she's constipated all the time, and is convinced drinking diet coke keeps her regular. So the diet coke gives her gas, possibly contributes to her diarrhea (which is what she really has), and it's a viscous cycle.


Additionally, her paranoia has increased. She thinks people are stealing her Diet Coke's because she's drinking them so fast because she thinks she's constipated. So she hides her Diet Coke, then can't find it, then gets mad. She's mad. She's mad when she can't find the Diet Coke, she's mad because she's "constipated" she's mad that nobody is fixing the constipation etc.


The nurse decided to increase her depacote to hopefully address the anger/agitation, but so far I haven't seen any changes other than more obsession, more paranoia.


This evening, the nurse called me to ask how we decrease or eliminate the diet coke. ARGH....I warned her that Mom would be angry at everyone, but that I was willing to let her run out and not bring a new supply.


The nurse pointed out that she's already unhappy, so it's not like we would be taking a happy person and depriving them of their only treat.


Thanks for listening to me vent....I hate that I can't fix this, or reason with Mom. She's always been stubborn and once she gets something in her head, dementia or not, she is hard to budge.


Anyone experience something similar or have words of advice or encouragement?

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Update: Mom yelled at my son again, so my son is taking a break from his Grandma. He's got anxiety and issues of his own, and he doesn't need this on top of it.

Mom has gotten much better, as far as her rage and obsession goes, although I still get an occasional angry voice mail and/or call (if I answer.)

Friday I took Mom to a neurologist who specializes in dementia, and she took a bunch of cognitive tests, they also want her to get an MRI to see if they can pin point which dementia she has. They said it would help them treat it if they know what kind she has. With approx. 90 types, I'm thinking this could be a long shot, but what do I know. I kept expecting Mom to get frustrated and angry and refuse to take the tests, but she was a real trooper and kept trying.

She had the most trouble drawing a watch face...she got the numbers, but could not draw the hands at all.

Today I took her to the Dentist, then Olive Garden for lunch, and then her training session at the gym. She was pleasant the whole day. Maybe the rage thing has calmed down for now.

I'll keep you guys posted.
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AND that didn't last long. She yelled at my son on Saturday when he took her to the gym to workout. They have been doing that weekly, once a week and she finally crossed that line and yelled at him. I feel very so bad for both of them, I'm sure my Mom would be horrified if she realized what she did. So now, the only one left in my little family that she hasn't yelled at is my daughter, but my daughter never does anything alone with Mom, I'm usually there, and Mom hardly ever yells at me if my daughter is around.
Anyway, she had a good day yesterday, but this morning she's called four times:
She can't poop, she needs diet coke, she only has $2, and she's yelled each time. I only answered the first call, let the rest go to voice mail so she can yell freely at my voice mail.

UGH.
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Update: Mom is almost like her old self....you know, from about a month ago.
She hasn't called and left any awful voice mail messages!
Took her to the 4th of July parade yesterday and we all had a good time.
The Diet Coke obsession is still there, but diminished, not any rage anymore.
Maybe it's a phase that's going to come and go.
The appointment with the neurologist who specializes in Dementia is set up for a couple of weeks from now...

For the moment, life is good.
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JJ, it would be not surprise that seniors get angry with frustration - physical illness and loss of independence and decision making. I know sometimes I do when I realize I can no longer do things I did a few years ago, or that it takes me twice as long.
I think with my mother, a lot of her negativity was generational and her personality. She looked for things to find fault with and that wasn't just when she was 90, but always. That was just her, and it got worse as she aged. She was raised by family where men were important and woman, not so much, so she sometimes used helpless and being a victim to try for sympathy. It was sad, because she could flip in a minute and be stubbornly independent as well. At 70 she married a domineering horrible misogynist who controlled everything she did and thought. I think he pushed her the rest of the way and I hate to say it but family rejoiced when he died in 2000 because he treated her like a servant and like a pet - a possession. If he had lived, she surely would not have survived more than a couple of years.
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SueC, it depends on the person. In my mother's case, we could not understand how she could live that long being so unhappy and discontent (and yet healthy and living in a lovely IL and having her daughters there for her, never having had to work, always secure)
My sister now lives in the same IL, and one of the residents is a woman who is 107! She can still get around, live independently and according to my sister, she is a barrel of laughs and is full of life, tells wonderful stories of her experiences. I'd like that to be me some day but if I am sick and unhappy, no I wouldn't want to live to 101, especially if I took everyone around me down.
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With all due respect, I can't imagine anyone wanting to live past 101.
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AmyGrace, my Mom seems to be struggling to be content as well, in fact, it almost seems like she wants to be angry. Wonder if there is some comfort in the anger? Makes no sense, but it's as if she's caught in a stage of grief--the anger stage.
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I guess it depends on location. The AL was taken over by Brookdale the month she moved in, so maybe the food was a holdover from the original owners or Brookdale cut their budget or they just had a lousy kitchen staff. The prices went up too. I can't complain about the upkeep or facility itself, and many of the staff were good. I ate lunch there several times, mushy weird veggies, definitely not what the residents liked (grey looking Brussels sprouts, cabbage, mushy carrots, wilted salad). Mom was not able to cut or chew the overcooked meat and no one seemed to be aware she or others just pushed it aside. It seemed like we had to point everything out to them, and if they observed things we didn't, they didn't meet with us to share it. Her dementia was bad enough that she was doing weird things and needed guidance. On the other hand, the NH was wonderful. The dietician visited with each patient's family to find out their likes and dislikes and needs. Her meat was either diced or shredded and it was tasty. She had a half dozen choices at each meal. We didn't make much of a fuss at the AL because Mom, unfortunately, was negative about everything anyway. She drove us nuts with her constant complaining and wasn't interested in anything, didn't like anything. She complained about the food in IL as well, and they have a 4* restaurant - the IL was so wonderful (she was there 8 years) that last year my sister (79yrs) sold her house and moved there! She absolutely loves it, has dozens of friends, loves the trips, etc! Poor Mom, it made us so sad that she just didn't know how to be happy or smile.
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AmyGrace, honestly the people I have both at her Memory Care home & the outside crew, including her personal trainer at the gym, are top notch! As a side note, the first ALF that mom & stepdad lived in was also part of Brookdale--the food thing must depend on location, I thought their food was pretty decent. Lol
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JJ it sounds like you are making progress and the facility staff is right on the ball, having meetings for family, discussing treatment, etc. Wonderful! They recognized that the medication she is on is not working like it should and recommended a neurologist to help get the right balance. Hopefully this will eventually end up helping your Mom be more calm and happy - and your frazzled nerves will get a break.
My mother was in AL in a Brookdale facility (not memory care as her dementia was manageable) It was a beautiful place, but we were not impressed with the staff, or the horrible food. It was expensive, she had level 3 care, and we expected more. Her room was kept immaculate, but she lost her hearing aids in her room and it cost us $2000 to replace them. They didn't monitor her anorexic eating habits and didn't notice she was barely eating and skipping meals. To our knowledge made no attempt to provide foods she would eat and never expressed concern to us . I used to bring her yogurt, Ensure and sweets and I think that is mostly what she lived on. They didn't try to guide her even though her dementia was obvious that she needed more attention. She was not capable of realizing when her hearing aids weren't working or needed batteries but so many times I visited and she couldn't hear at all and I had to bring her to the nurse's station for batteries. We insisted they take the aids away from her at night and put them in in the morning after both were lost and she kept fidgeting and throwing away the batteries. It seemed they noticed little unless Sis and I pointed it out. I was surprised that in the 10 months she was they were only able to coax her into the shower twice. (she was stubborn!) She finally got so weak we had to move her to a NH and she got much better care there and much better tasting food. But by then it was too late. She was 101 and time I guess. But her health was excellent and I can't help thinking she might have had more time if she had more appealing food and oversight at the AL.
So, I'm happy for you and your Mom, that she has people who are very into her special needs.
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JJ it sounds like you are making progress and the facility staff is right on the ball, having meetings for family, discussing treatment, etc. Wonderful! They recognized that the medication she is on is not working like it should and recommended a neurologist to help get the right balance. Hopefully this will eventually end up helping your Mom be more calm and happy - and your frazzled nerves will get a break.
My mother was in AL in a Brookdale facility (not memory care as her dementia was manageable) It was a beautiful place, but we were not impressed with the staff, or the horrible food. It was expensive, she had level 3 care, and we expected more. Her room was kept immaculate, but she lost her hearing aids in her room and it cost us $2000 to replace them. They didn't monitor her anorexic eating habits and didn't notice she was barely eating and skipping meals. To our knowledge made no attempt to provide foods she would eat and never expressed concern to us . I used to bring her yogurt, Ensure and sweets and I think that is mostly what she lived on. They didn't try to guide her even though her dementia was obvious that she needed more attention. She was not capable of realizing when her hearing aids weren't working or needed batteries but so many times I visited and she couldn't hear at all and I had to bring her to the nurse's station for batteries. We insisted they take the aids away from her at night and put them in in the morning after both were lost and she kept fidgeting and throwing away the batteries. It seemed they noticed little unless Sis and I pointed it out. I was surprised that in the 10 months she was there they were only able to coax her into the shower twice. (she was stubborn!) She finally got so weak we had to move her to a NH and she got much better care there and much better tasting appealing food. But by then she was down to 85 pounds. She was 101 and miserably unhappy, so when she passed it was a blessing for her and for us.  But all her life, her health was excellent and I can't help wondering if she might have had more time if she had been given more oversight, appetite enhancers and more appealing food at the AL.
So, I'm happy for you and your Mom, that she has people who are very into her special needs.
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Thanks AmyGrace, Mom is on some antidepressants, anti-anxiety, and mood controlling drugs. In fact, they just increased the mood controller about a week ago, and coincidentally or not, she was much calmer today.
Her caregiver took her to play cribbage at the senior center and reported back that today was almost like "old times" the old times of three weeks ago! ha.
Also, Mom has only called once today.

We had the quarterly review at the memory home today, and they faxed over a referral to the neurologist, who comes highly recommended for this area. Mom will get evaluated, and we will make sure she is on the correct meds for her.

So it was the director of nursing, another RN, the director of the facility, the director of activities, me, and the case-worker who I have contracted with (the company providing the outside caregivers also provides guidance for all aspects of elderly care.)

Almost all of them said that they think it sounds like Mom might have FTD. Like a total dummy, I said, "Frontal, Temporal....what's the D stand for?"

DUH....D=Dementia. ha ha ha Anyway, they said if the neurologist can confirm or come close to figuring out which type of dementia mom has, that will make it better for accurate medicine etc.

So that's the next step.
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JJ just substitute milk of magnesia for diet soda and she could have been my Mom. I feel for you, we all do. It is just so hard to deal with dementia - there is no reasoning, but, as you said - all of a sudden their memory is crystal clear. Out of the blue, Mom would recite the poem "Trees" verbatim - yet couldn't remember what I said 2 minutes ago. Its so sad.
Question: since your mother gets so agitated, is it possible the doctor can put her on a tranquilizer? When Mom's dementia got worse and she was frustrated, she got angry and nasty sometimes, even pushed my sister. An antidepressant and tranquilizer helped her a lot. Maybe it would help with your Mom's obsession about bowels and soda? Mom finally got over her MOM obsession mainly because once moved to AL, she didn't have access to buying it as she did in IL, and she forgot about it. Prayers you can deal with your Mom and she will settle down soon.
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So today I took Mom to her scheduled work out session with the trainer at the gym. She was actually pretty calm. She was VERY confused about a lot of stuff, but no yelling. The ladies at the kitchen in her "neighborhood" are keeping the diet coke for her, but she hasn't realized that there are none stored in her room anymore. Didn't matter, she couldn't find them, plus there is a rumor that she drank almost 12 in one day...

I do believe there is a nurse there that rubs Mom the wrong way, I was actually getting a vibe from her. The nurse had an attitude, and the nurse is convinced Mom is going to hit her. I'm thinking to myself, well she might if you can't lose the attitude, she's demented but not stupid, she can read vibes off people!!!
Anyway, I'm glad Mom didn't rage at me today, but it's kind of sad when she's' so confused. This disease stinks big time!!!
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Caring RN, thanks for that laugh! We can commiserate and find pockets of humor!

Also, update: no UTI, just a rather swift & bizarre change in behavior. Tomorrow should be interesting, I'm taking her to the gym for her session with her personal trainer. Last week was OK, so fingers crossed that Mom is saving most of the anger for the voice mail.
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Caring RN, thanks for that laugh! We can commiserate and find pockets of humor!
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SueC, thank you. Mom has been relentless in her obsession--both poop and Diet Coke. I only answer one or two of her zillion calls, the rest go to voice mail. The theme of the voicemails are: I need some Diet Coke because I can't poop, except she says "sh*t" and my the. It's usually followed by yelling "god d*mmint". Once or twice she has threatened to tAke everything she ever gave me away. And the she follows all the ugliness with, "I want to live with you."

Yeah, ain't happening.

She's angry, can't find the Diet Coke that we do bring, today she had roughly 36 again and was calling to tell me she had none! 😐
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Sorry I couldn't give you any sage advice. Just know, we feel your pain because we are not alone in these experiences (((HUGS)))
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Your thread is just the thing I needed to read right now. I just got into bed from visiting my Mom all day. She is 93 & bedridden. She is obsessed with her bowels & now is refusing to wear the diaper because " It causes pressure on my butt, so I can't fart"🤔. Also, she lost her 1 good $1000.00 hearing aid. The caregiver & I went threw every inch on the bed, floor, bedding, trash, my Mom! Couldn't find it. Mom INSISTED it's stuck on her back! Checked her body again. Nope. Can't convince her🙄
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If you have to not answer the phone and not visit as often as you have been to take care of yourself, then that's what you have to do. She isn't going to get any better about this and you have to have some control of her situation, just like they did when we were kids and they had to assess what was right for us.
Darn, this is an awful predicament, one we wish we didn't need to be involved in. But we have to do what's RIGHT for them first, whether they like it or not. There is no simple answer.

Sulynn,
It's very common for stroke victims to only be able to swear,but not talk, after their stroke. Maybe this is true with Alzheimer's/dementia also. The other words don't come out well but the swear words do. She is not responsible for her actions or words.
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and today only 3 calls, no anger, but VERY CONFUSED!!!!
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Things escalated very quickly. Thursday Mom got a small six pack of tiny Diet Cokes, Friday my son brought 24 regular sized diet coke cans to my Moms. Her caregiver who takes her to play cribbage at the senior center & to one of her training sessions at the gym brought her six more baby cans on Tuesday. So that's 36 Diet Cokes. It's been a week and she had consumed (or hidden) all but one tiny can by today. I brought her a bottle for her fridge and gave the kitchen three more for tomorrow.

Because she can't find a stash of diet coke in her room, she is OBSESSED. She is still convinced she can't poop, every time she sits on the pot and doesn't poop, she goes looking for diet coke. Every time she can't find the diet coke, she calls me.

I actually answered one of her calls and explained that there was one or two in her room and the rest were down the hall. I had to re-explain in four times in the same phone call. She called two minutes later wanting to know where her diet coke was.

This is not going well. She's FURIOUS. I quit answering the phone, but her voice mail messages are full of rage. She went raging to the nurse, who gave her a fiber wafer (that I picked up and brought to them for that very purpose.) Said Mom was yelling and in her face until she gave her the wafers. Mom went back to her room and called me to say the nurse didn't help her.

So much for the Placebo affect.

If I put a bunch of Diet Coke in her room so that she'll calm down about not having it, she will drink them all too fast, and add to her bowel issues.

If I don't, she will stay ANGRY and upset.

Gee....so much fun!

The quarterly review/meeting with the staff is next week (great timing....you bet we will be discussing strategies for this obsession)

Also, no answer yet on the possible UTI, but up till now she's not ever had one, and she's had raging episodes before. I'm not holding out hope that it's a solvable UTI.

At least she didn't yell at me while I was there visiting, she saving that for the voice mails.
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thanks Jeanne, I'll keep you posted. It's amazing the amount of support here and how it has really helped me through all of this past year.
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Keep us informed on how this goes, will you JJ? We learn from each other, and dealing with obsessions is a pretty common theme here!
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Sulynn, it's always so fascinating the things that they do remember, vs. all the other gazillion things they forget.
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Thanks to everyone for their input, I appreciate it.

Blackhole, yes, I too have been known to have caffeine withdrawal headaches...and I do love Diet Coke like my Mom (it's the only soda we had in the house when I was growing up) however I have made an effort to cut way back. I have days where I don't have any, and days where I have a few of them. Been trying other non-sweetened options, which are usually a decent substitute if they are cold enough! ha ha

Anyway, I spoke with one of the floor caregivers today about Mom, and she said that even she noticed how many Diet Coke's Mom has been drinking, and we discussed the option of keeping Mom's DCs in the large "fridge" to be handed out at meal time only. Our angle is to tell Mom that since people are stealing her DC's, (which she believes is happening) keeping them in the "big" fridge will ensure that she doesn't run out....

I think cutting her off completely at this stage is just cruel! Today I stopped by to see her and she's back on the kick of wanting to live with me. There is nothing I can say that makes her happy except OK, and I'm not saying OK. So instead I told her I would look into it. I'll see how long that works...I tried distraction, which worked for a few minutes, but as I was leaving she brought it up again. She says, "I want to live with you and clean your house." As if that will seal the deal!!!!

Back to watching the Teepa Snow videos....WOW....so inspiring. I want to be able to have those awesome lines and calm down my own Mom....seems like everything I do just gives her an opportunity to argue with me. I don't want that, but there are so few things I can say that are non-arguable. Is that even a word?

OH, and my son, he's the one addicted to the Ramen Noodles.....
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However you get Mom off the Diet Coke, weaning is key. Gotta taper her intake.

If Mom abruptly goes from all that caffeine to none, she'll feel lethargic and headache-y and be extra cranky. (Can you tell I have a wee caffeine dependency myself??! Not Diet Coke, thank the good Lord.)

And I know everyone's system is different, but artificial sweeteners wreak havoc with my gut. Bloating, stabbing pains, weird gas and spells of, um, "overactivity."

Your poor mother. Classic dementia. She hones in on a problem that she needs to "fix," and her chosen solution makes it worse....or creates a new problem.

Check Mom's fridge and meal plan for "light" yogurt. They're also full of those same garbage sweeteners.

And -- again, just me -- but sucralose (and sweeteners in that category) are hard on my gut, too.
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My poor mom became obsessed with ''the F word'' [we had seen ''the phrase'' painted on a big rock along side the road about a year earlier] to the point where she had to say it before she could get out of bed, eat, or do anything else...and she needed me to hear her or it didn't count. Mom never swore a day in her life, so this was way out of character for her. The Hospice nurse tried to help out by suggesting to Mom to think of another word that started with F, like ''fudge'', and then said that she, the nurse, was on a diet and would like to have a ''diet coke and a fudge cookie''...good idea, but the next thing I knew, Mom was telling me that she needed ''8 chocolate candy bars and 8 chocolate cookies'' before she could start the day and I had to set them out so she could see them. She also wanted Depends on all the time because she was just sure that she was going to make a mess...the thing is, she never became incontinent until she started have seizures toward the end. It was frustrating and sad to watch this person that you've known all your life become someone you hardly knew at all...but that's just what happens and you deal with it the best you can.
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AmyGrace, I suspect Mom had an accident or two recently and was horrified by the lack of control, and she's now angry and obsessing in an attempt to regain some control. She even said to me once, "I used to be able to control my bowel movements." which I found to be a really odd way to put it, but the more I think about it, I believe this is all about control and her anger at not being in control.
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My mother also had an obsession with her bowels. Its pretty common with that generation. She used to hide milk of magnesia all over her apt and with her bad memory, we were sure she was overdosing. Then she would complain about diarrhea, then constipation. Its a hard thing to deal with.
I would be concerned about too much diet coke. Latest medical studies are starting to identify the dangers of aspertame, and also artificial sweetners mess up the body's metabolism and can cause weight gain, believe it or not. If the drink contains caffeine, that can also cause anxiety and even irritability, etc.  Perhaps the staff there can help transition her to some sort of natural soda or drinks?  Some of the health food stores carry natural soda.
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